So Wednesday morning I told my husband he had to take me to the emergency room. Now, I hate the ER, so you know I had to be in some pain before I would say that. Yet, I had what I thought was every indication of appendicitis - belly pain on the right and a fever.
The ER staff was wonderful. They immediately took me back, no waiting. I did have a fever, definite tenderness, so the ER doc ordered a CT scan. I drank some really yucky stuff and forty five minutes later got my first experience with a CT scanner. Little did I know it would not be my last.
Doc came in after the scan and said my appendix was fine, but there was an area on my right colon that was enflamed, probably colitis or diverticulitis, and she was going to consult with a gastroenterologist. Eventually she came back and said Dr. H, the gastro, wanted me admitted.
He came by later as I was in a semi-private room (hubby was arguing with administration who had me in the system as unemployed and uninsured - eventually it got straightened out and I got a private room) and told me that he wanted to put me on IV antibiotics and a clear liquid diet for a few days to see if we could take care of the inflammation. I wasn't thrilled, but figured I better do what the docs say. So I stayed in the hospital for three days, eating chicken broth and jello and taking antibiotics that made me very ill. I was on demerol and phenergan for the pain and nausea, except for one time when a nurse gave me the demerol without the phenergan and I threw up all over the place. After that I made sure there was phenergan in the shot.
So, Saturday morning rolled around and the GI doc didn't think I was any better. I tried to say I was - but he didn't buy it. I just wanted to go home. But he ordered another CT scan, and it came back that the mass had not changed. So he told me he wanted to consult with a surgeon. Now I'm getting nervous.
Well, after consulting the docs told me there were three choices - wait and conservatively treat with antibiotics and rest, do a colonoscopy to see what's going on up there, or operate. The first option had already failed so it was out. The GI doc said the colonoscopy was not really safe to do with all that inflammation and even if he got a negative biopsy it could still mean cancer, so the best route was probably just to go ahead and do surgery anyway. That was the first mention of cancer, but they all immediately followed it with "Oh, but you're healthy and 34, it's probably not cancer."
So surgery was planned for Monday morning. The doctors believed it was either an inflammatory bowel disease, like Crohn's, endometriosis that had grown through the bowel wall, or it was cancer. Everyone seemed to be betting on endo, because I have a history of it. But we all lost the bet. It was malignant.
The doctor removed the tumor and the lymph nodes. The tumor had perforated the bowel wall, which is a very bad thing. Yet, all the nodes were cancer free, which is a very good thing. A few days after surgery I met with the oncologist.
My cancer is stage 2. Chemo is optional really, but she recommends it because in the computer models, it adds to my survivability percentages. We'll take every percentage we can get. She says according to her models I'll have an 87% chance of being alive in 10 years. They aren't the best odds, but hey, I'll take 'em. I won't have to lose my hair, but there will be other side effects. I have an appt in a couple weeks to talk about it further.
Whew. I'm tired. If you have questions, you may ask, I'll share any info I have. Still in shock a bit, I don't know that I've really grasped the whole "I have cancer" idea yet. I know I want to do whatever I can to be here to watch my kids grow up.
Several people probably have my address, I don't mind if it's shared, but please know that no one needs to send anything. I've already felt your good thoughts and prayers and I appreciate them.
All my love,
Belle
[ April 24, 2006, 06:22 PM: Message edited by: Belle ]
Posted by breyerchic04 (Member # 6423) on :
Even though she says you don't have to, I do have her address if anyone wants it, email me
breyerchic04 at gmail dot com
Posted by Narnia (Member # 1071) on :
(((Belle))) Oh my gosh Belle, I'm so glad that this was diagnosed NOW so you can get it taken care of and get well!! Best wishes to you (as well as prayers) and keep us posted. We love you!
Posted by Evie3217 (Member # 5426) on :
Wow. You are so strong. I'm sending you all my love and hope for a speedy and full recovery. ((Belle)) You'll be in my prayers.
Posted by Noemon (Member # 1115) on :
I'll be thinking of you, Belle. 87% may not sound that great, but it's so much better than it could be. I'm really glad that this thing had symptoms that were severe enough to convince you to go to the hospital and get it checked out.
Do they have any idea how long the cancer had been forming?
Posted by romanylass (Member # 6306) on :
(((Belle)))
It sounds like you have great doctors and they're taking good care of you. Are you getting lots of hands on support (meals, child care, ect)?
Much loving prayer.
Posted by larisse (Member # 2221) on :
(((Belle and family)))
I am glad you listened to your body and got to the hospital. I am glad your husband is such a strong defender of you. I am glad that your doctors were so thorough in their examination. I hope things keep progressing well. You and your family are in my thoughts.
Posted by Derrell (Member # 6062) on :
(((Belle))) Again, best wishes for a full and speedy recovery.
Posted by jeniwren (Member # 2002) on :
Belle, how long will you need to do chemo, do you know? Would it be helpful to get encouraging emails a couple of days after a treatment? Would cards in the mail be better?
Just trying to think of practical ways those of us too far away to be of any real physical help could contribute to your healing and recovery.
Posted by Uprooted (Member # 8353) on :
Hi Belle, we haven't "met" but I wish you all the best; sounds like your doctors are on top of things and will do their best to take care of you. It will be hard but here's to looking towards happy results.
Posted by Dagonee (Member # 5818) on :
((Belle))
I'm praying for you and your family.
Posted by quidscribis (Member # 5124) on :
Belle, honey, I can imagine the shock. I'm glad you got yourself taken care of, despite how you feel about ERs. Continue taking care of yourself and let us know how we can help. You'll be in our thoughts and prayers.
Posted by sarcasticmuppet (Member # 5035) on :
(((Belle)))
I can't imagine what you're going through. Stay bright. You've always struck me as such a bright personality. Don't lose the light that's in you.
Posted by MyrddinFyre (Member # 2576) on :
Good thoughts and prayers being sent your way.
Posted by imogen (Member # 5485) on :
(((Belle)))
I am so glad you went into the ER. My thoughts are with you and your family.
Posted by Telperion the Silver (Member # 6074) on :
Holy s*#$ Belle!!! ((((Belle)))) I'm totally flabbergasted. You're like way to young for this! Messed up. I'm in shock, I can't even imagine what you're going through.
Shock can be useful...it lets you be rational in the face of craziness.
I'm thinking about you.
Posted by Bob_Scopatz (Member # 1227) on :
Belle,
You are in our prayers & our hearts. I'm glad the prognosis is so positive. And with a perforated bowel, I'm amazed you feel well enough to come and post. I'm glad you have good and careful doctors.
Posted by mackillian (Member # 586) on :
Damn.
Kick its butt. Posted by rivka (Member # 4859) on :
I am also impressed that you are feeling well enough to compose such a well-written post! *hug* Take care of yourself, sweetie.
You are going to beat this. Posted by Synesthesia (Member # 4774) on :
Ganbatte, Belle!
Posted by King of Men (Member # 6684) on :
Hmm. I don't know if you've played any wargames, but let's turn things around : 100 - 87 = 13, or about one in eight. Which is to say, if you were rolling an eight-sided die, you'd need a two or better to survive ten years. In a wargame, that would be an amazingly tough critter. I'd say your chances are quite good.
Posted by Kwea (Member # 2199) on :
quote:Originally posted by King of Men: Hmm. I don't know if you've played any wargames, but let's turn things around : 100 - 87 = 13, or about one in eight. Which is to say, if you were rolling an eight-sided die, you'd need a two or better to survive ten years. In a wargame, that would be an amazingly tough critter. I'd say your chances are quite good.
LOL
Interesting way of putting it...
Belle, I hope you are feeling well, or as well as can be expected, and you are in my thoughts and prayers.
Posted by firebird (Member # 1971) on :
Oh Belle. You are being so brave. Positive psychic vibes being sent your way adn to your family too.
You sound like you are in good hands.
Posted by Cali-Angel-Cat (Member # 8799) on :
Belle!
Wow! You are in my prayers along with your family. You are very lucky.
~Bonnie~
Posted by Farmgirl (Member # 5567) on :
Your faith is great, Belle. I know you will hold onto that.
The prayers of my family are still with you. We prayed together for you just last night. I hope you can keep us updated whenever you feel like it.
hugs to you, Farmgirl
Posted by Olivet (Member # 1104) on :
Belle, I have picked up the phone several times to call you, but I don't want to be a bother. *wince*
In any case, you've been in my thoughts and prayers (yup, honest-to-goodness PRAYERS!) so please get well. I miss you. *hugs*
Posted by fiazko (Member # 5812) on :
(((Belle)))
Posted by ClaudiaTherese (Member # 923) on :
Belle, I'm still thinking about you. It would be hard enough on me, but with your kids, this must be an insane time. Posted by Storm Saxon (Member # 3101) on :
Be well, Belle. Sorry you have to go through this crud.
Posted by ludosti (Member # 1772) on :
I firmly believe that positive thinking, prayers and determination are worth every bit as much as your medical treatment. I'm sorry that you're facing a scary time in your life. I'm glad you have a wonderful family, friends, and good doctors to help you through it.
Don't get bogged down by numbers. 87% is a lot. If you get worried about that 13%, think about my sensai. He was diagnosed with cancer several years ago (probably almost 5 years ago now). He was given a 5% chance of survival, period. He's still alive and kicking and has had clear scans for more than a year now. Posted by John Van Pelt (Member # 5767) on :
Thinking of you and your family.
I have an idea of the fight that is in you.
{{{{Belle}}}}
-jvp
Posted by Vána (Member # 6593) on :
Oh, Belle! I wish I could be doing something. Cooking, helping with the kids, giving you and your family hugs. Even though we've not met in person, I think about you often.
Please send us updates as you are able. This is so frightening!
Posted by Lime (Member # 1707) on :
You will be in our prayers, Belle, for many years to come. I'm very glad that they caught it this early and that you have a positive diagnosis. 87% is good. Please keep us updated.
Posted by The Pixiest (Member # 1863) on :
((BELLE!!))
I'm so sorry to hear about this =(
I hope ten years from now you look back on this as an annoyance. Something that just inconvenienced you for a while.
Pix
Posted by Belle (Member # 2314) on :
Hey guys - you have no idea how much that post took out of me, it's still hard staying upright in a chair for a long period!
Today I'm feeling better. My staples are itchy. I get them out on Friday. Next week I meet with the oncologist to discuss chemo and I'll have to make an appointment to have a port surgically implanted - that would be for the drugs to go through apparently they can't use regular peripheral IV's.
The doctors believe I've had this for quite a while. I'm also shockingly anemic - I was borderline needing a transfusion, and the doctors were amazed that I hadn't noticed a lot of fatigue before now. I just figured hey, I'm a busy mom of four who's in school, so I'm naturally tired all the time. I'm taking iron tablets to help build up that blood count.
I'll be doing chemo for six months. I'll go in every other week for one day and wear a pump with the drugs in it. I'll also need a colonoscopy to check and make sure there aren't any more polyps or anything to worry about, and that will be repeated every year for the rest of my life. My mother and brother are also scheduling one, as they are now in a high risk group because of being related to me.
I will not lose my hair, which surprised me, I was prepared for it. I was going to buy some funky hats and just have fun with it. But fortunately, I'll keep the hair and just deal with regular old yucky side effects like nausea and fatigue and the doctor said there will be some neuropathy that will particularly affect my hands and face.
I am not down at all, I'm rejoicing. For one thing, the cancer hadn't spread which is huge. For another, my husband had a supplemental cancer/catastrophic illness insurance policy on our family and we will be receiving money to cover all out-of-pocket expenses. Plus our health insurance is covering everything, so we won't be suffering financially. That is a blessing
My aunt Robin came up from Florida and is staying with me to help with the kids and with housework and to be here with me during the day. Our church has brought food galore, and friends and neighbors have all asked to help. We are doing fine. Thanks everybody for your love and concern. See ya tomorrow when I get enough energy up for some computer time.
Olivia - stop hesitating - call!
Posted by Minerva (Member # 2991) on :
Is that 87% relative to the general population? Because you've gotta figure that a certain percentage would die anyway, even if completely healthy (car crashes and the like).
You are definitely in my prayers.
Posted by Elizabeth (Member # 5218) on :
"Hey guys - you have no idea how much that post took out of me,"
I do, Belle.
I am so glad yu are feeling better. Thank you for taking the effort to let us know.
Can you send me your address?
edob63@yahoo.com
Posted by Kettricken (Member # 8436) on :
I'm glad you seem so positive. It must be scary, but kids are a great incentive to keep fighting. Best wishes and take care.
Posted by Theaca (Member # 8325) on :
I agree, you should be rejoicing. Things could be soooo much worse, your prognosis is good, you've got a wonderful support system and wonderful insurance. You are very lucky that you had symptoms this early, frankly. The iron will kick in within about 10 days, you might be amazed at the difference in your energy. I was worried that you were between churches, sort of, and wouldn't have that support system in place, but it sounds like it is there. If you can tolerate the chemo regimen easily, then in six months this will mostly be behind you, other than close follow up, labs, and colonoscopies.
BTW your kids will start needing colonoscopies around age 24. By then they'll be so used to you getting one yearly it won't be any big deal. They might even look forward to it. I wouldn't tell them about that for a while, though. Posted by unicornwhisperer (Member # 294) on :
((Belle))
Prayers and good thoughts your way! I'm so glad it was caught early. I thought I was going to cry when I read your post.
Posted by Beren One Hand (Member # 3403) on :
((Belle))
If the tenacity of your debating skills is any indication of your life force, this cancer doesn't stand a chance. Posted by quidscribis (Member # 5124) on :
Belle, it's so good to hear that things are getting taken care of!
Take care of yourself. Or else. Posted by Lalo (Member # 3772) on :
Jesus. My mom went through something similar when I was a kid, though I didn't find out until I was much older -- good luck, Belle. Your kids need you. I don't know where I'd be now if I'd lost her.
Good thing your survival chances are so high -- I'm still looking forward to meeting you and the whole Southern bunch someday. Hang in there.
Posted by Rakeesh (Member # 2001) on :
Well, that's good news, Belle! Glad to hear it Given the excellent odds the docs quoted you, that was the next thing I was worried about. I mean, when I sprained my dang ankle, some expenses piled up. Undoubtedly for something as serious and long-term as this, that is exponentially worse. But you and your family have it covered:)
Hey, you can still buy funky hats Posted by Tammy (Member # 4119) on :
((((Belle)))) You're amazing, an inspiration to us all.
Posted by Belle (Member # 2314) on :
*waves*
Just checking in today. Nothing new to report - I really want the staples out. Still very sore but needing far fewer pain pills.
Did I mention that while in the hospital I had a central line put in? The idea really scared me, because it's a line straight into the big veins near your heart, but once it was in it was heaven. They could stop sticking me, because they could draw blood through the central line. I had five different IV sites become infiltrated while I was in the hospital and I was getting tired of them starting new ones.
We really need a new way to check if an IV is infiltrated besides "Inject some saline and see if the patient yells that it hurts."
I love nurses. They are such wonderful people. I had the best nurses, only one could I complain about and she was very new, just hired out of school. The rest were saintly women. They brought drugs that stopped pain. They brought me ice, they helped me walk they encouraged me and talked to me when I was alone. (which wasn't often, but occasionally Wes would leave to get something to eat, poor baby) My doctors were awesome too.
Yesterday I got a card from someone I don't know. Wasn't a hatracker, she said she heard about me from my mom's great-aunt and sent me a card to encourage me. People can be wonderful, ya know?
Posted by Farmgirl (Member # 5567) on :
Well, hopefully you will soon get a card from me, as well!
Belle -- I can't tell you how happy it makes me to see you post here. Every time you add a little bit it makes me smile to think you are feeling well enough to share a little. You are such a positive person and a great example to all of us.
FG
Posted by Anna (Member # 2582) on :
I've been in a hospital (for somehting really minor) at the beginning of Septemer, so I can totally relate and say most nurses do a wonderful job, they are the ones who help you through the day-to-day not funny stuff, and that's great. (((Belle)))
Posted by Noemon (Member # 1115) on :
How are Wes and the kids holding up, Belle?
Posted by Belle (Member # 2314) on :
Wes and the kids are doing well. Emily, the 8 year old, took things the hardest but even she is doing better now. The little ones were too small to really understand, they just missed me while I was in the hospital and Mom said Abigail cried for me a good bit. Natalie just refused to accept that anything bad would happen, and when she heard the good news after the pathology report, she stopped worrying.
Wes has been wonderful, he took a lot of time off and has been right there for me through it all. He took care of everything with school, got the paperwork for me to get an emergency medical withdrawal and said he didn't want me worrying about school at all. I won't go next semester either, because I'll still be in chemotherapy. After that, we'll see.
Tomorrow I see the surgeon and get my staples out - yay! On the 16th, I will meet with the oncologist, Wes is going to go with me so we can discuss the treatment program with her.
Posted by Elizabeth (Member # 5218) on :
Nurses are amazing, aren't they, Belle? I mean, no slam on doctors, but frankly, the nurses are the ones who are there doing the caring. I would see the docs one minute per day, and the nurses all day.
Belle, where is your central line? Mine was in my leg.
And, um (TMI TO FOLLOW) > > > > > > > > >
>
> > > > > > > > Boy did I wish I had kept up on the shaving! When they took the tape off, well, I need say no more.
Posted by Belle (Member # 2314) on :
Elizabeth it was in my chest. When I was out during the surgery they tried to put one in my neck, but they missed. So the did the sub-clavian on my chest.
I was shocked when they pulled it out how long the catheter was - I mean that sucker was way down in my chest! But it was nice having it in there, especially since they could draw blood through it. They kept sticking me to test my anemia, which seems counterproductive if you think about it. They really wavered on giving me blood, but my surgeon told me that recent research had come out that colon cancer patients didn't do as well if they received transfusions so he was willing to let me be symptomatic from the anemia to avoid the transfusion. But a good bit of my weakness and dizziness was due to that.
Now I'm faithfully taking my iron tablets every day and I can already tell a big difference in my energy level.
Posted by accio (Member # 3040) on :
(((Belle)))
You’ll be in my prayers. Hung in there and get a lot of popsicles to get the bad taste out of your mouth. Are you in UAB?
Posted by Belle (Member # 2314) on :
Once again I'm just saying hello. The staples are gone, yay!
There is one little thing - there was a spot on my liver that the surgeon believes is a harmless cyst. But, to be certain it's just a harmless cyst, he wants me to have an ultrasound on my liver next week. So I have to go in and do that. Then I'll schedule another visit with him to check me over and make sure I'm healing okay, then he'll schedule the procedure to insert my port. I will be asleep when he does that, he says they have to do it in the OR.
Then, on the 16th I go to the oncologist to get prepared for chemo. Looks like I won't actually start chemo until December. I'm going to try and time it so I'm not having chemo the week of Christmas.
accio, I'm not at UAB. I went to Brookwood because that's the hospital where I've had all my surgeries before and where I had all four kids. So far I'm completely happy with the way things are going and don't see a necessity to move to UAB for care.
Posted by ClaudiaTherese (Member # 923) on :
Belle.
*big hug
You are amazing.
Posted by Belle (Member # 2314) on :
Got a bunch of cards today including one from Xavier and Val. Thank you guys, it really lifted my spirits.
Having a setback kind of day. I'm in a lot of pain, which is odd because I'd been doing better with pain. I think it's because I did too much yesterday.
Now I'm starting to get nervous about chemo. I know it will be okay, but I'm bummed that the holidays may be taking place with me feeling bad. Tonight my mom and hubby and I are going to start working up a list and a budget, and I'm going to try and do some shopping before the first chemo treatment. I'll need more energy than I possess today, though. I don't know why I felt bad today, it's just not been a good day.
Posted by ElJay (Member # 6358) on :
:/
Hope it's just today, and you wake up feeling great tomorrow. *hugs*
Posted by rivka (Member # 4859) on :
Doing too much because you're feeling better can do that. So don't do that! (The "doing too much" part, not the "feeling better" part.)
(((((Belle))))) Hope you're feeling better in the morning.
Posted by Kwea (Member # 2199) on :
(((Belle))))
Posted by Narnia (Member # 1071) on :
Hang in there honey and take care of yourself. Don't over-extend even though the holidays are coming up. (((Belle)))
Posted by Nell Gwyn (Member # 8291) on :
Belle, I'm so sorry you're having to go through this! *hugs*
My mom was in chemo and radiation for breast cancer (she's been in remission for a year), and she was constantly pushing herself to do more than she could handle - she's an example of what not to do in this regard. Don't feel guilty or anything if you have days where you just need to stay in bed and relax - listen to what your body's telling you. It'll be a rough road, but it will get better.
((((Belle))))
Posted by Mrs.M (Member # 2943) on :
Belle, I just wanted to let you know that my whole family prays for you every day.
I sent you something that I hope you don't already have - feel free to return it if you do.
Posted by Katarain (Member # 6659) on :
(((Belle)))
You're in my thoughts and prayers.
Posted by Belle (Member # 2314) on :
Hi everyone.
Better day today. I'm getting energy back and the pain is tolerable.
Wednesday I go to have my liver checked out via ultrasound. I'm not really all that nervous, because my surgeon is convinced it's a cyst and not cancer and since he saw it I figured he ought to know. Besides, all my lymph nodes are clear and it would be very unlikely that it metastasized to the liver without involving the lymph nodes.
Still, it's one more thing on my plate to consider. Today was my first day home by myself. My aunt was here until Friday last week. But the kids are in school and I'm alone and I was positively decadent - I went back to sleep after they got on the bus. I haven't slept during the day like that in forever, but I felt better when I got up. I haven't been sleeping well, because I'll try to turn over in my sleep and it will hurt, so I wake up often.
You are all so, so wonderful, I just can't express it. My spirits are always lifted when I check this thread. Thank you, again, from my heart.
Posted by mackillian (Member # 586) on :
And thank you for being so strong. Posted by romanylass (Member # 6306) on :
Keeping you in my prayers. My small group is praying for you as well. One lady, who is a cnacer survivor, said to remind you that stress hormones are the worst thing in the world for a cancer patient, so no worrying allowed.
Posted by Belle (Member # 2314) on :
Got two hatracker cards yesterday - from Shigosei and Elizabeth. *hugs*
Found out that while coughing is uncomfortable it's nothing compared to sneezing. Ouch.
Tomorrow is my ultrasound for the liver. I'm going to be looking up information on liver cysts to reassure myself all will be okay.
Other than that, not much to report.
Posted by larisse (Member # 2221) on :
Belle,
Sneezing with stitches.... oowie. I hope you are feeling much better today. Good luck with your ultrasound. I would like to send you a card, if you don't mind.
Posted by twinky (Member # 693) on :
I'm not sure how it works with chemo, but when my dad was having radiation therapy it took a fair while (close to two weeks) for the side effects to start manifesting. If the side effects of chemo are faster you may still feel bad over Christmas, but if they're slower they may not start until after Christmas (depending on when in December you start the chemo).
Like I said, I don't know, but I hope it's the latter.
Posted by Ela (Member # 1365) on :
Belle, just want to give you my good wishes for a speedy recovery. You are in our prayers.
Posted by Belle (Member # 2314) on :
Ultrasound went well. So well I decided I had enough energy to go shopping, so I did.
Then I spent the evening on the couch totally exhausted and went to bed an hour early with my new copy of A Feast for Crows in hand, thinking to read it completely and didn't get very far. (I had actually started reading it earlier in the day and figured I could finish it in one day. No can do. However, I did finish it this morning. )
The official report from the doctor isn't back yet on the ultrasound, however the tech told me all I needed to hear while being sure to tell me she wasn't a doctor and couldn't tell me anything - she said "but what I see is good news for you."
The cyst is apparently very small, and from what I've read liver cysts are not all that uncommon and seldom a cause for concern. So that is one thing out of the way.
Next week we see the oncologist. That will be a very important appointment, as she will be telling us about the chemo. The surgeon wants to put the port in soon after we talk to the oncologist so I'm going to call today and try to get that scheduled.
One weird thing - if I press down on the incision there is a hard mass underneat the incision. It's actually the whole length of the incision, not painful to palpate but definitely a hard mass. Is that scar tissue? I know I could call the surgeon's office and ask, but it's not painful or anything, just strange. I'll tell him about it when I see him again and ask if it's normal.
Posted by Theaca (Member # 8325) on :
It's probably the precursor to scar tissue. The healing wound takes more space up with all the work it is doing. That's my unscientific view of it. "Granulation tissue" might be a more medical word for it, but I'm not quite sure that is the right word for it.
Posted by Belle (Member # 2314) on :
Thanks Theaca I figured it was something like that.
I got a wonderful gift from Mrs. M today. And, one of the instructors from my class emailed me to tell me the class had signed a card for me. I thought that was really sweet.
I called the surgeon's office but they won't schedule the surgery until after the oncologist orders it, so I couldn't get that done which might mean we won't get started with any of this until after Thanksgiving. That would be nice, actually, I could enjoy the holiday with my family. (and we have lots to be thankful for!)
Insurance papers came today. Everything was covered fine, but it was amazing to see the long list of charges. And the surgeon's bill wasn't even part of it! I thank God for insurance, this would have bankrupted us had we not had it.
If anyone out there doesn't have health insurance - try to get some type of affordable coverage. I know it's hard, but do try. I was healthy and young and no history of this type of cancer in my family so I'm proof that these types of catastrophes can happen to anyone. Posted by Olivet (Member # 1104) on :
Belle, I sent you an email. Did you get it? Would it be okay if I called you tomorrow?
Posted by Sopwith (Member # 4640) on :
Thoughts, prayers and love to ya, Belle.
(And has anyone heard from NFL recently?)
Posted by Belle (Member # 2314) on :
Olivia, I did not get the email but of course you can call me.
The doctor called with the results of the ultrasound and as expected, it's a cyst and nothing to be concerned with. He said to write that one off and quit thinking about it.
Next, we just wait until we meet with the oncologist and see where to proceed from there.
Posted by Mrs.M (Member # 2943) on :
Fantastic news about the cyst! Here's hoping you can take the most benign course of treatment.
I'm glad you like the gift. I tried to choose the stain that matched your bedroom (which I recall as being red?), but that you can paint if you don't like it.
Posted by pooka (Member # 5003) on :
(((Belle))) I've been scarce lately but I just wanted to send you a hug.
Did you know bowel cancer is the #2 cancer in our state ? I guess Utah doesn't have quite so much Lung cancer.
Posted by Goody Scrivener (Member # 6742) on :
Hooray for good news on the cyst!!
Posted by Belle (Member # 2314) on :
Woo hoo!
Got the first check from the cancer policy today, which will make up for the hospital co-pay we had to pay as well as the lost income from Wes spending so much time in the hospital with me.
Man, I'm so glad we didn't cancel that policy. It is really going to be a big help.
On another note, my grandmother would have been pleased to hear that I'm getting all my thank you cards written for the flowers I received in the hospital and to all the people who brought food and sent gifts and did other wonderful things for me and my family. Of course, I would be writing notes forever if I sent one to everyone who expressed well wishes or offered prayers including all you guys here.
The "most unexpected award" goes to a company that I never even worked for. I used to work at a pharmaceutical company - six years ago. Right before I left, three guys split off from that company and formed a new pharmaceutical company. They wanted me to go to work for them but they couldn't afford me at the time, and then when I got pregnant with the twins and decided to stop working it became a moot point. Anyway, this company that I never even worked for and is made up of people that for the most part haven't seen me in six years sent me flowers. I was stunned. Heck, maybe when I'm ready to start working again they'll hire me. Posted by Wendybird (Member # 84) on :
Belle - I'm so glad to hear that things are progressing well. I'm sure with your strong determination and God's grace you will beat this. Someday you will be at one of your children's weddings and look back in amazement. I know a lady in my church congregation who contracted breast cancer at a very young age. Her kids were still small. She beat it and now has 3 or 4 grandchildren, two children on missions and a son in college. You'll make it through too.
Love Wendybird
Posted by Kwea (Member # 2199) on :
I am glad to hear things are going better. Posted by Belle (Member # 2314) on :
So yesterday was the appt. with the oncologist.
It went well, I really like her and so did Wes. I remembered her some from the hospital but it was his first time meeting her. She is very personable, even funny and spent a lot of time talking to us.
I will be doing a pretty standard colon cancer chemo regimen of oxaliplatin and 5-FU. Leucovorin, a reduced folic acid, is also given with the 5-FU because it helps it work better.
The way it will work is I will go into the office on a Monday and be hooked up to an IV infusion of oxaliplatin. The infusion will last about 3 hours. I'll also receive the leucovorin. They will push some 5-FU at the end of the session, then they will program a pump with the rest of the 5-FU and I'll take that pump home with me so the 5-FU can continue to be infused. On Tuesday I'll go back for another infusion of oxaliplatin and leucovorin. That one will be shorter, about 2 hours. Again, they'll push some 5-FU and send more home in the pump. On Wednesday I'll go back, and they will flush out the port and remove the pump and give me an injection of some type of anti-nausea (I forgot the name, and Wes has all my notes) They will also send me home with a prescription of phenergan to help with the nausea.
I'll do this every other week for 6 months, a total of 12 treatments. I was warned that side effects sometimes don't show up until after a few treatments (that gave me hope I may still feel pretty good at Christmas!) My first treatment begins on December 5th. Next Monday I meet with the surgeon so he can give me another post-op exam and schedule the insertion of the port. We hope to have it inserted the week after Thanksgiving, but it might even be done the same day - on the 5th.
Biggest risk of side effects are nausea, fatigue, reduced immunity (I was instructed to get a flu shot and a pneumonia shot and for the entire household to get flu shots as well.) Some neuropathy in the hands and feet which will probably include numbness and tingling, and a heightened sensitivty to cold, especially in the hands and mouth/throat. I should wear gloves when outside, avoid taking things out of the fridge or freezer (unless I use protection on my hands) and drink and eat everything at room temperature or warmer for the first four or five days after treatment. The doctor is concerned most about anemia, since I have a problem with it, so she said they'll watch it carefully and intervene with iron or with a drug like Procrit if necessary. She did tell me the best way to combat fatigue is to stay active and encouraged me to go walk at the track every day, but that I should get adequate sleep, maybe even an hour or two more per night but do not spend the whole day as a slug on the couch.
I've lost 20 pounds so far. I was happy about that, but the doctor wasn't thrilled. She reiterated how important it was for me to stay hydrated and well nourished. The reason I've lost weight is all the days in the hospital on a liquid diet and the fact that I have no appetite at all, and (TMI warning!) my system hasn't adjusted yet to having such a large portion of my colon removed so I spend a good bit of time in the bathroom.
I'm a little nervous, I admit. I know it's necessary, and that it will help me and I need to do it but the idea is still a little nerve-wracking.
With family support and with God, I know I'll make it through, but I must confess to being a bit scared.
Posted by BannaOj (Member # 3206) on :
Hang in there. It sounds rough, but at least you know what is coming now.
Been keeping you in my thoughts.
AJ
Posted by Narnia (Member # 1071) on :
You're going to make it. I'll keep you in my prayers and hope that the side effects of the chemo won't be horrific. *hugs* I'm thinking of you, thanks for keeping us updated.
Posted by Belle (Member # 2314) on :
Well, I've spent the last hour calling around for flu shots.
And there aren't any. Even when I explained my situation, I couldn't get one. My family doctor is out, they may get some next week, but it's first come first serve, I asked if I could be placed on a priority waiting list, but they said no.
So...I called the oncologist and spoke to a nurse and asked how important it was. She said for me - very important. Definitely do all I can to get one. For the kids, not as critical, I didn't need to break my neck trying to get theirs. The pediatrician said there just really aren't any pediatric doses available - they've already given out they have and have been told they most likely won't get any more. I even called Children's Hospital.
So it doesn't look like I can get flu shots for the whole family. But I will get one for me, my Mom's company is giving them out and she said I can get one, it will cost me $25. I said fine. So I'll get one next week, before I start chemo.
Posted by ludosti (Member # 1772) on :
Grrrr. It's really a pain when the people who really need flu shots can't get them. My mother had the same problem last year (with all the shortages). She has several immune disorders and needs to have a flu shot every year, but was unable to find anyone who had them. I ended up asking my doctor (who had been her doctor several years ago) if he could give her one, since his office had some (so luckily she was able to get one).
It sounds like you've got a challenging holiday season ahead of you, but I'm glad you have a good docter and a good plan for treatment. I'll be thinking and praying for all to go well for you.
Posted by quidscribis (Member # 5124) on :
Belle, I'm glad to hear you're doing well and you've got a good plan of attack in place with a doctor you like and can talk to. Posted by imogen (Member # 5485) on :
I'm glad to hear you're doing well.
Do you have to be lying down for the IV infusions, or are you allowed to be propped up and doing something like reading a book or even a gentle craft?
Posted by Theaca (Member # 8325) on :
Propped up would be my guess. The more modern infusion centers I've seen actually have attached desks with built in computer/dvd players. Pretty cool. I don't know how common those are, though.
Posted by Mrs.M (Member # 2943) on :
Belle, I'm outraged that your family can't get flu shots. Who could possibly need them more than y'all do?!?!
quote:I'm a little nervous, I admit. I know it's necessary, and that it will help me and I need to do it but the idea is still a little nerve-wracking.
With family support and with God, I know I'll make it through, but I must confess to being a bit scared.
It is so much to your credit that you're not hiding under your bed, screaming your head off. I'm glad you like your doctor - that is so important. It sounds like there is a good, effective plan in place, but that can feel overwhelming, I imagine. I have faith that you'll get through this and I pray every day that you have the most benign course possible.
Posted by Theaca (Member # 8325) on :
quote:Belle, I'm outraged that your family can't get flu shots. Who could possibly need them more than y'all do?!?
Nobody, but there are tons of people in America in the same boat, or nearly, that can't get their flu shots either. I can't BELIEVE we have a flu shot shortage for the third year in a row. The recommendation at this point is for everyone to get a flu shot, so it is first come/first serve all over the country.
Posted by Anna (Member # 2582) on :
[derail]Do you want to know something even stupider? Here in France we're short of flu shots as well, but it's the first time, and do you know why we're short? Because there has been a lot of people stupid enough to think the shot would protect them against bird flu, so they all jumped on it when they didn't need it and now we can't protect the weaker amongst us (old people and people having pulmonary problems). It makes me so mad. [/derail] Belle, I'm so glad to hear you're feeling well with your doctor, that's important. Add me to the list of the people who are impressed by your courage. *hugs*
Posted by ketchupqueen (Member # 6877) on :
quote:The recommendation at this point is for everyone to get a flu shot, so it is first come/first serve all over the country.
Some county and city health departments are trying to keep some in reserve for the very young, very old, and high-risk, but they often have a hard time keeping their supplies up because pharmacies and such buy them up first. *sigh*
Posted by pH (Member # 1350) on :
About the flu shots:
Belle, since you're in school, do you think you could go to your school's clinic and get one there? Our health center is offering something called Flu Mist for $20 to students. I called my pediatrician, and she said that although they don't use it because it's not approved for children, it's just as effective as the shot for adults, and it's supposedly much easier on the person who gets it.
-pH
Posted by Theaca (Member # 8325) on :
Flu mist is only for healthy adults, noone with immune compromise should take that, nor anyone with asthma. I'd not recommend that for her currently.
Posted by Belle (Member # 2314) on :
I am fine, I can get a flu shot, no problem. Its' the pediatric doses that seem to be impossible to find.
My pediatrician did say I could call back next week, but they weren't hopeful there would be any.
So I'll just have to pray the kids do not get sick, and that if they do my flu shot protects me.
Posted by pH (Member # 1350) on :
quote:Originally posted by Theaca: Flu mist is only for healthy adults, noone with immune compromise should take that, nor anyone with asthma. I'd not recommend that for her currently.
I didn't know about the asthma thing, but I thought the flu shot was bad if you had a compromised immune system to begin with.
How bad does the asthma have to be to prevent its use?
-pH
Posted by Theaca (Member # 8325) on :
See, flu mist is a live attenuated vaccine, so that an immunocompromised perseon could catch flu from it. The flu shot is a killed virus vaccine. You CANNOT get flu from a flu shot.
I dunno about the asthma bit, as far as I know, if you carry an asthma diagnosis, you arent supposed to take flu mist, period. Also you can't take it if you are over 50.
So flumist is definitely the one that is more dangerous for people with health problems and poor immune systems.
[ November 18, 2005, 04:44 PM: Message edited by: Theaca ]
Posted by ketchupqueen (Member # 6877) on :
It's because asthma is one of the high risk factors for flu-- if you get it, you're at higher risk to die from it. So they don't want you taking a vaccine that may give it to you, because you're more likely to end up with complications. That's how it was explained to me, anyway.
Posted by Theaca (Member # 8325) on :
That does make a lot of sense. Flu mist might actually have better protection than the flu shot, so weighing the pros and cons is very complicated. I just follow the guidelines.
Posted by Belle (Member # 2314) on :
yeah, I'm losing it.
After everything I've been through, you wouldn't think I'd be close to losing it over something like the insertion of a catheter under my skin.
But I am.
Everyone is telling me I'm being silly but I'm harboring this irrational fear that I'm a huge risk of bleeding to death on the operating table when they cut into my chest and insert that port-a-cath for the chemotherapy.
Yes, I know it's irrational - the risks are extremely small.
Why I'm obsessing over this I have no idea.
My husband told me that of all the things he's concerned about with chemo - the insertion of the catheter is the thing he's worried about the least and doesn't understand me obsessing over it.
Heck I don't understand it either.
I told him I wasn't excited about the chemo either, but one thing at a time - the insertion of the port is first, so I'll freak out about it now, thank you - there will be time to freak out about chemo later.
I wonder if calling my doctor and asking for an anti-anxiety is a good thing? Because I'm not eating and I'm losing sleep and I'm nauseous and can't seem to stop thinking about it. That's very unusual for me, and normally I wouldn't consider medicating myself for anything, but I know that not eating and not sleeping is so not good for me right now. I wonder if I need something to calm me down a bit.
Posted by Theaca (Member # 8325) on :
Honey, you've already HAD a central line. This is just like it, only put in in a more controlled setting so that it can stay in longer and with less messy dressings.
Go ahead and call.
(Also, they use xrays for placement finding don't they? That just makes the procedure even more precise!)
Posted by King of Men (Member # 6684) on :
Wasn't it you, at some point in a discussion of the problem of evil, put forth the opinion that things like pain and death were pretty minor from God's perspective, and good for us in the long run? Or maybe I'm thinking of ketchupqueen. Anyway, I do recall that you are a theist, so perhaps you could try deriving some comfort from that.
Posted by Rakeesh (Member # 2001) on :
Hmm. I'm not sure if this will help or not, but personally I think worrying about having a piece of plumbing installed into one's torso is quite rational in one way. My personal belief is that it's one of those things which should worry someone, until they can wrap their head around it.
Kind of like flying, y'know? Now, me personally, flying never bothered me, because years (decades, in fact) before I ever actually flew anywhere, I was fascinated by planes and stuff, and read about them a great deal. So I had a very, very long time to hear that although the risks were there, they were very, very small.
Kind of like flying is my experience with a ride called (I think) Der Stuka at Wet'n'Wild. http://www.wetnwild.com/Orlando/Main/Main.asp?ContentID=3&CategoryId=4&SubCategoryId=1 Now this experience I had very little time to get ready to make. Instead of decades, I had like a couple weeks, when I heard we were gonna go to Wet'n'Wild, and I'd seen some commercials. Even as a child, when those sorts of things are overcome more easily (well, in my experience anyway), it scared the pants of me doing it the first time, because I knew in my gut, "This is nuts." In reality, the danger was very, very slight, despite appearances.
I imagine that this port-a-cath is a similar situation, minus the decades of previous reading. The risks are very, very small, but the process is something so unusual. We just don't have any instinctive hardwiring to deal with it, just like flying.
But you're not a child, accustomed to adapting to wildly changing circumstances like children are. And this is not like flying or a thrill ride in a water park, and your biggest worry isn't, "Well, I gotta do this or kids will laugh at me," or, "I've already bought the darn ticket."
I don't think it's unusual that you're freaking out. I expect that were I in your situation, my "freak out" threshold would've been reached a long time ago.
I think calling your doctor is certainly a good idea. I think in your situation, calling one's doctor for any unusual symptoms such as the ones you're describing is not only a good idea, but your responsibility as a patient, wife, and mother-and it can only help anyway. As for the rest, well, I hope it helps stop you from beating yourself up about it, to realize that freaking out isn't so strange. You've been in my thoughts, and will continue to be so-and thanks, by the way, for updating this thread as you have been Posted by Synesthesia (Member # 4774) on :
I'm sorry you are anxious. Is there anyone that you can talk to about it to deal with that issue?
Posted by Rakeesh (Member # 2001) on :
*sigh* Doing something I don't usually do-taking an argument to email!
Posted by ClaudiaTherese (Member # 923) on :
Maybe the port is something tangible that your mind can focus the anxiety and fear on. Something like "cancer" is a pretty amorphous concept, as is even "chemotherapy." But "putting a knife through my skin and sticking something under" is, well, a lot more focused.
Like Rakeesh, I can't imagine not having reached my "freak-out threshold" long ago, if I were you. I do remember, though, that specific tangible things were always the (sometimes all out of proportion) focus of my concern before my surgeries and during my mother's illness.
Posted by Elizabeth (Member # 5218) on :
Belle, If it makes you feel better, I had a major panic issue while I was in the hospital, and for many months afterwards. it was usually when i was about to go to sleep, and often in my dreams.
In the hospital during the first week, it might have been because of the steroids.
After that, I think it was just because I was usually alone rght before falling asleep. But even when I was home, wth Steve next to me, it was scary.
I was not afraid during the day. I am not saying that to sound all strong or anything, i just was sort of out of it as far as how sck I had been(which was, I learned, part of the sickness itself-a basic cluelessnes as to how sick you are)
So, it has nothing to do with being strong or weak, silly, not following through on your stated religious beliefs, or any of the other things you might tell yourself or someone else might tell you.
It is not silly to panic. It happens. You will have breakdowns at unexpcted times and in unexpected places, and it will not subtract from your strength or your reason.
It might be because you can't open a jar of pickles.
Thinking of you.
Posted by Megan (Member # 5290) on :
((((Belle))))
Thinking of you.
Posted by romanylass (Member # 6306) on :
I'd be panicked too. Is there a cancer support group at your hospital?
Posted by Corwin (Member # 5705) on :
((((Belle)))) Just good wishes, since every bit of advice was already given.
---
Hmm, I hate to bring the focus back to this, but... King of Men, I hope I'm misreading your post somehow, but at first glance it seems kind of out of its place here. Would you perhaps consider editing it? It just hits me as quite a sarcastic thing to say in a situation where sarcasm is needed the least. And if that was not your intention I apologize in advance for bringing it up.
Posted by Goody Scrivener (Member # 6742) on :
Belle, you're totally not being irrational here. This is something huge you're going through.
My mother works with these ports (among many different kinds of IV lines and catheters) every day. Yes she's seen one or two get infected (out of hundreds!!!) and create problems, but she says that what you're getting truly is the best possible way of administering your chemo medicine. Least complications, most effective method of delivery.
However, knowing that you're worried about this, I absolutely recommend that you have a talk with your doctors specifically about the port.
Posted by King of Men (Member # 6684) on :
I was not being in the least sarcastic; I was trying to help. Even though Belle, presumably, really believes in the doctrine I referred to, I can see where it would be easy to forget in a time of stress. So I thought it might be a good thing if I reminded her that there will come a time when she looks back on this and thinks 'how silly I was!' I know I would find that comforting.
EDIT : Rakeesh, if by some mischance your post should refer to me, you will need to send your email again. I changed emails since I registered at Hatrack, and evil nasty Hotmail closed my account for me.
Posted by Corwin (Member # 5705) on :
Thanks for the clarification, KoM. As you know it's kind of hard to tell when sarcasm is used in writing, so I wanted to be clear on that. Posted by Valentine014 (Member # 5981) on :
Belle, I think it would be a good idea to contact your doctor's office and ask them if they can give you the name of someone who has had a port put in (so many cancer patients have to have one). I think if you could talk to someone in person, it might help. They could show you their's and a nurse can show you how she will draw blood from it and administer chemo.
Ports are the greatest things. So many of my patients refuse to have regular blooddraws, they prefer the port. I've watched them, it honestly looks like it hurts less than an arm draw. Most of them don't even blink, they just continue with the conversations they are having with another patient.
That's another thing, you'll make friends. If your office is anything like the one I work in, the chairs are side by side. You'll see the same people and get to know them.
I hope it all goes well. We're keeping you in our thoughts.
Posted by Sharpie (Member # 482) on :
I'm with CT on this; this seems like a really "safe" thing to focus a lot of your fears on. I do this, myself. I'm an anxiety pro Saying it, saying you are freaked out, that you are scared -- this will help. Say it to them when you arrive, too. "I'm really scared of this; help talk me through it?" At the very least, it might help them be gentle with your spirit.
My dentist wiped away my fear tears with a tissue like a mother would do for a child. People can be so good and kind if we ask them to be.
I'll be thinking of you, too, Belle.
Posted by Boon (Member # 4646) on :
My daddy had a central line so I could administer his IV antibiotics at home. I understand why you're worrying, it looks pretty freaky. But Dad said it was no big deal, and it made his treatment *so* much easier it was *way* worth it.
I can't really offer any good advice that hasn't already been said, but I'm thinking of you and wishing you well. Posted by Storm Saxon (Member # 3101) on :
Wow. KoM makes even me look tactful. Posted by King of Men (Member # 6684) on :
At y'service, m'lady. *Knuckles forehead*
Posted by Allegra (Member # 6773) on :
I wish you the best Belle. I have been thinking about you since I heard the news. I have just had a hard time thinking of something to say that has not already been said.
I still do not have anything new to say. I just wanted to let you know that I admire you a lot and I know that you are stong enough to get through this.
As far as the port goes I agree that you should tell your doctor that you are concerned. I am sure you are not the first or the last patient to be concerned about it.
Posted by Mrs.M (Member # 2943) on :
Belle, make the call. Do whatever you need to (within reason) to make things bearable for yourself.
It's so funny - the things we focus on in times of crisis. When Aerin was born, I was freaked out by her belly button (it looked icky because of her umbilical lines). You have every right to be as freaked out as you want over whatever you want. There are no wrong or weird or irrational feelings here.
Posted by Belle (Member # 2314) on :
I could call my therapist, even though I no longer see her (and haven't for about a year) she came to see me in the hospital and gave me her home phone number and told me to call if I needed anything. I also could call my psychiatrist and ask for something, but I don't want to take anything that will interfere with the chemo drugs, so I suppose the best place to call if I think I need medication is the oncologist.
Tomorrow I have an appt. with the surgeon that is going to put in the port, so I will talk to him about it, too. I like him a lot and he's very personable for a surgeon but still not the most approachable person in the world. I have a feeling from him I'll get "Oh, everything will be fine, stop worrying."
I do know that they will be putting me to sleep before they put it in and it's SOP at that hospital to give something in the IV during pre-op that makes you relax and pretty much forget everything, so once I'm at the hospital I know I'll be fine. But it's the waiting until then, I think.
Posted by ketchupqueen (Member # 6877) on :
I have to agree, I read your concern and it just flashed "tangible item to displace fear to" to me. I think a call to the therapist or doctor is definitely in order-- I bet that they could help a lot. (((hugs))) We're all pullin' for you, and I know you'll be strong enough to get through this. Just do what you need to. Posted by LadyDove (Member # 3000) on :
Belle,
I'm sorry you're going through this. I will pray for peace of mind and strength for you and your family.
Posted by Narnia (Member # 1071) on :
(((Belle)))
Posted by Theaca (Member # 8325) on :
No antidepressants or antianxiety pills interfere with chemo--many people on chemo need them. I would think that psychiatry would be the choice to figure out what to take now given that you've been on meds in the past and they know your history better. But running it by your oncologist first to see what she says will work too. And I forgot you weren't seeing the therapist anymore.
Posted by Rico (Member # 7533) on :
(((Belle)))
I wish for you the best, I may be new here but you're one of those people whose posts I've always enjoyed reading.
Posted by sarcasticmuppet (Member # 5035) on :
I know it doesn't begin to compare, but I had problems with stress before my (now I realize how minor) ankle surgery. I cried my eyes out when the orthopedist told me I needed surgery, and I stressed over it for the three days until I actually had it done. Thanks to some prayers, a father's blessing, and some really great nurses, the outpatient hospital stay turned out to be a much smaller deal than I thought it would be.
((((Belle)))) Don't be afraid to ask questions to ease your mind. It's worth it. Posted by Synesthesia (Member # 4774) on :
I can't even remember when I had chemo. I think they injected it into my right hand so I still have little scars there...
Posted by Anna (Member # 2582) on :
(((Belle))) I can't find words to express what I'd like to tell you.
Posted by Olivet (Member # 1104) on :
Dearheart, we're all thinking of you. Posted by MyrddinFyre (Member # 2576) on :
Waiting is awful *hugs*
Posted by Belle (Member # 2314) on :
Well, I saw the surgeon this morning. We discussed my GI problems - which have gotten better since I quit taking iron (on the advice of the oncologist) he agreed with the oncologist's assessment that my system just isn't tolerating the iron pills, so he suggested I stay off them. The oncologist said we can treat the anemia with other methods, so it's not just a huge deal.
He explained the whole port insertion procedure, which didn't make me feel much better. I told him I was very nervous about it, and he said most people were more nervous about having it removed, since the removal is done in the office without general anesthesia. I told him thanks, I hadn't even considered that part of it yet so now I have something new to obsess over.
He just laughed and assured me I would be fine, that the insertion was a very minor surgery and that I would be well cared for by the pre-op nursing staff who knew how to deal with anxious people. He showed me what the port looked like and where it would be placed - on the left side of my chest since I'm right handed.
One funny note - he was making out the orders when he said "you don't have any major medical problems, do you?" I said "No, except CANCER!"
The nurse seemed to think that was hilarious. He laughed a little bit and said "I meant that I didn't know about - diabetes, heart disease..."
Now I'm just waiting for the nurse that does the surgical scheduling to call me so we can set up the time for the surgery. It will be sometime next week, he said not to worry about getting it done before the 5th, it should be no problem doing it next week.
Now...I think I'm going to call my psychiatrist. I'm supposed to see her again in January, I'm going to try and move the appt. up and get something that will help keep me calm, even if I only take it right before the chemo. Everyone with experience with this is telling me that after the first time or so, I won't be nearly as nervous, so maybe I'll only need help for a short time. I'm not big on medications (I stopped taking Adderall months back with my doctor's okay and seem to be coping all right without it) but I also know that my anxiety level is affecting my daily life, and that's not what I want to deal with right now.
Posted by Belle (Member # 2314) on :
Okay, my doctor called back and called in a low dose of Ativan for me to take at night to help me sleep, and to take during the day if needed - it's the lowest dose it comes in just .5 mg.
I told her that I was nervous and obsessing over this port and that it was silly because everyone was telling me it was such a minor procedure and she said "of course it's minor - it's not their chest!"
Anyway, she made me feel better, I tried to apologize for bothering her, I always feel like a druggie when I call and ask for something but she told me that as soon as she got the message she called me immediately because she knew I never called and that I was one of the last people she'd ever expect was just calling to get drugs - she knew me better than that. Anyone would be anxious in my situation and there was nothing at all wrong with getting some help with extreme levels of anxiety, and told me being diagnosed with cancer was about as anxiety-producing as it gets.
Posted by imogen (Member # 5485) on :
She sounds like a good doctor, Belle.
quote: being diagnosed with cancer was about as anxiety-producing as it gets.
Right on. You're not over-reacting, or being silly, or leaning on drugs you don't need. You are coping amazingly well with an almost uncopable situation - there is *nothing* wrong with trying to get help along the way.
*hugs*
Posted by ketchupqueen (Member # 6877) on :
quote:One funny note - he was making out the orders when he said "you don't have any major medical problems, do you?" I said "No, except CANCER!"
The nurse seemed to think that was hilarious. He laughed a little bit and said "I meant that I didn't know about - diabetes, heart disease..."
I'm so glad that your sense of humor is intact.
And I'm glad about the Ativan, too, I hope it helps you. Posted by Megan (Member # 5290) on :
(((Belle)))
I can't imagine the stress you must be under right now. I was thinking about you today, though, and I thought of something. Are you the type of person who enjoys massages? Because, if you are, they're a great way to reduce some of the stress you're feeling. Naturally, it won't take away the (very justified) anxiety that you feel, but it might be a nice, relaxing distraction, if you get it done a day or two before the surgery.
Posted by The Rabbit (Member # 671) on :
Belle!! I don't know how I missed this thread up until now.
Inserting the catheter is a very very safe procedure. I'm sure you will be OK.
Perhaps it would help to take some time to think and maybe talk with your husband about why this is freaking you out. My guess is that all of your fears about cancer and chemotherapy are getting focused on this one procedure. Being diagnosed with any serious medical problem changes your view or yourself and the world. It can make you feel very fragile so suddenly simple things seem very very dangerous. It might help to go through some of the literature on mourning because all of the processes that happen when someone close to you dies, happen when you are diagnosed with a serious illness.
Posted by Shan (Member # 4550) on :
Hugs and prayers to you and your family, Belle. I'm so sorry this is happening - and you are being very brave.
A friend of mine suggested thinking of panic attacks as an autumn tree shaking off the old leaves and leaving room for new growth. If that visual helps you, please take it!
Posted by Nell Gwyn (Member # 8291) on :
((((Belle)))) I'm sorry you're freaking out. Hang in there!
Posted by pH (Member # 1350) on :
Ativan's a very good drug. It also makes you feel wonderful when you wake up. Very, very good for anxiety.
-pH
Posted by TheHumanTarget (Member # 7129) on :
Belle, I know how scary this can seem, and for that, I'm truly sorry. I know it seems overwhelming, and much worse than it really is, and it's hard to gain the perspective where having a semi-permanent catheter in your chest is better than it sounds. Look at the bright-side, though:
No more I.V. sticks No more blood draws Depending on what type of anchor is used, you could be bullet-proof (if only in one spot...they used a dime-size piece of kevlar to anchor mine)
I had a broviac catheter placed before my chemo treatments began, but because the time between diagnosis, surgery, and chemo was less than 24 hours, I didn't have the same amount of time to obsess over it that you do.
Just try to focus on the goal. You will be healthy. There are difficult days ahead, but you will survive, and soon this will just be a bad memory.
Posted by jeniwren (Member # 2002) on :
Funny thing about knowing that once you can get through this season, that on the other side of it it won't seem quite so bad, is that it doesn't really make it feel less bad, I don't think.
When Rainbow went in for surgery, I was obsessed with her dying under general anesthesia. It didn't matter that the anesthesiologist promised the team of doctors would pray over her before beginning. He was incredibly kind. I spent the weeks prior and the hours during in a tightly contained package of panic that she would die and there would be nothing at all I could do about it. I never told anyone how scared I was.
I'm glad you told us and your doctor and have gotten something for it, Belle. Your feelings aren't unreasonable at all.
Posted by Belle (Member # 2314) on :
I slept very well last night, I didn't want to get up this morning. But I did. Mainly because if I didn't the kids would be home all day, and since this is their last day this week I'll have plenty of time to do things with them the next five days - today I needed to do some stuff by myself. Like go to the library for some new books to read, go to the store for some Thanksgiving supplies and go to the bank.
The nurse called this morning and we settled on Tuesday of next week to insert the port. She is calling the OR to find out an exact time and then will let me know.
Posted by Belle (Member # 2314) on :
The surgery will be at 8:00 am Tuesday and I'll need to be there at 6:00 am.
Posted by dkw (Member # 3264) on :
I have stuck a posty to my computer to remind me to pray for you at that time.
Of course, I will have to move it to a location at home, since the chances of me actually being to the office by 8am are slim to none. Posted by Belle (Member # 2314) on :
Answering some questions I've missed on the thread so far.
quote:Are you the type of person who enjoys massages? Because, if you are, they're a great way to reduce some of the stress you're feeling.
Megan, yes I've had therapeutic massages before - my cousin is a certified massage therapist. That's an excellent idea, and I think I'll call her and see if I can set up a session with her on Sunday or Monday before the surgeon.
quote:My guess is that all of your fears about cancer and chemotherapy are getting focused on this one procedure. Being diagnosed with any serious medical problem changes your view or yourself and the world. It can make you feel very fragile so suddenly simple things seem very very dangerous. It might help to go through some of the literature on mourning because all of the processes that happen when someone close to you dies, happen when you are diagnosed with a serious illness.
Rabbit, I think you're probably right, it most likely is just me putting all my fears on this one thing.
Funny that you mention the whole five stages of grief - we were studying it in my health/medical communication class right before I went into the hospital. It is actually the five stages of coping with disastrous news - denial, anger, bargaining, depression and acceptance.
Funny thing though, knowing about these things still doesn't make it all that much easier to cope! Like knowing that I was depressed before, I knew I was depressed and that I should "snap out of it" but I just couldn't without help.
Fortunately, I do have a lot of help here with this situation. Last night a church member brought food. She called and said she knew that everyone had stopped bringing me food but that she figured I still didn't feel like cooking. So sweet. And what food! She and her husband are transplanted New Orleanians - they moved her years ago but still have family that lost homes in the hurricane. They brought homemade red beans and rice, homeade french bread, cole slaw, chocolate chip cookies for the kids and a homemade pound cake. She said she made the red beans milder than she normally would just in case I was having trouble with spicy food. It was heavenly! Warm comfort food. And I'm really looking forward to Thanksgiving tomorrow, I love turkey and dressing.
The ativan is definitely helping, a very useful drug as it also works as an anti-nausea - I had some trouble yesterday with feeling nauseous, so took 1 mg of Ativan and felt better pretty soon after.
Oh, the doctor's office called to tell me the results of my latest CBC - my red blood cell count is back to normal! So no need for me to take the iron(good thing, because I wasn't tolerating it well) and unless it plummets drastically after the 1st chemo treatment no need to worry about it again.
Posted by SenojRetep (Member # 8614) on :
quote:Originally posted by Belle: We discussed my GI problems - which have gotten better since I quit taking iron (on the advice of the oncologist)
My wife was anemic but couldn't take iron tablets because of GI problems. Someone recommended Gentle Iron which she's taken ever since. Her iron counts are up and she hasn't had any GI distress.
Posted by Anna (Member # 2582) on :
I'll be thinking and praying for you, Belle.
Posted by Belle (Member # 2314) on :
Today I got a gift from Anna - what a pleasant surprise and the perfect way to cheer me up on the eve of my next procedure. Thank you Anna.
Still nervous about tomorrow, my latest fear is that I will be alone. I scheduled the surgery on a day when I figured Wes would be there, but turns out he swapped shifts with someone today, so he doesn't get off work until 8:00 am - the time the surgery is scheduled. My Mom won't be there before 8:00, because she has to stay with the kids until they get on the bus. Wes is supposed to have someone come in and work for him at 5:00 and meet me at the hospital, but I'm terrified something will go wrong and I'll be all alone in pre-op and no one will be with me before I go back. As it is I hate the fact that I have to drive myself in. Wes is going to drive me home, then he and my mom will go back later for the other vehicle.
I really hate going by myself. I'll be scared. Posted by ElJay (Member # 6358) on :
***hugs***
Good luck, Belle. Stay strong. I'll be thinking about you. . . you're in Eastern time, right? So 7:00 AM my time, I'll be awake and sending you all the good vibes I can. Posted by Narnia (Member # 1071) on :
I'll be up too. 5 am Pacific.
My prayers and good thoughts are with you tonight and tomorrow. You're NOT going to be alone, even if the physicality of the situation makes it seem like you are. God is all over this and He's going to take really good care of you. (((Belle))) (But I'll pray that Wes can make it into pre-op to see you.) Posted by ketchupqueen (Member # 6877) on :
(((hugs))) I probably won't be up, but I'm praying now, and will tonight.
Posted by dkw (Member # 3264) on :
Belle -- if Wes can't make it ask for the hospital chaplain to come visit with you while you're waiting. Pre-surgical visits are usually pretty high on their list of priorities, especially if they're requested.
Posted by Shan (Member # 4550) on :
(((Belle)))
Is there someone from church that you would be comfortable waiting with you?
Hang in there - prayers and healthful thoughts flying your way.
Posted by Mrs.M (Member # 2943) on :
I wish I could be there to wait with you. I'll be there in spirit, which I know is pale comfort. I'm praying Wes can make it and that everything goes smoothly.
Posted by Goody Scrivener (Member # 6742) on :
Just like Mrs.M said. Your room is going to be packed with Hatrackers! {{{Belle}}
Posted by Elizabeth (Member # 5218) on :
Oh, we will be there, dear!
Love to you.
Posted by ssywak (Member # 807) on :
(((Belle & family)))
You know my prayers are with you all for a quick recovery.
--Steve
Posted by jeniwren (Member # 2002) on :
*echoes everything that Mrs. M said*
Posted by Kwea (Member # 2199) on :
Best of luck, Belle.
Posted by whiskysunrise (Member # 6819) on :
Posted by Anna (Member # 2582) on :
I'm glad you received it, Belle. They told me it would take long since it's close to Christmas time, but it took less than a week! I'm sorry my card was so short, but the post office closes very early and I can go there only once a week. What I wanted to say is that I think there's no better way to relax than reading a book with a mug of anything hot and a piece of chocolate. Since I don't know what books you already have... I'll be thinking of you a lot today. *hugs*
Posted by ketchupqueen (Member # 6877) on :
Belle is probably getting ready to go right now.
And what do you know, I'm still up. So I'll pray for you right now, Belle. (((hugs))) and best wishes. *goes off to pray*
Posted by ketchupqueen (Member # 6877) on :
The hour draws nigh. Still thinking and praying, and hoping that Wes is there. Good luck, Belle!
Posted by Kwea (Member # 2199) on :
Good luck, and God bless.
Posted by Anna (Member # 2582) on :
No idea what's the time for Belle, so still thinking and praying.
Posted by Belle (Member # 2314) on :
well I'm home.
Turns out I had nothing to fear - Wes got there before I did! He was waiting for me and bless him had already gotten all the paperwork so we didn't have to wait long
The surgeon came to see me in pre-op and I told him I was very scared and nervous and that I felt silly because I knew this was no big deal. He responded with "Everything is a big deal - anytime we do surgery, no matter how minor, it's a big deal. But we're going to take good care of you, I promise."
For some reason that really made me feel better. I guess because it gave the impression that he took this seriously and was going to do his best for me.
Well, after he left the anesthesiologist came by and I reiterated my fears and stress over the procedure so he ordered something to help me relax so that I could be calmer while we waited. The nurse checked on me often, asking me if I was feeling okay and if the medicine was working or not. It didn't at first, I fetlt no difference but she said she could give me more and then it helped. The surgeon had another patient before me so we were in pre-op a total of about 2 hours.
Last time I was in pre-op there were half a dozen people there - Wes, my mom, our pastor, and some friends. This time it was just me and my beloved hubby and it was nicer I think. He told me funny stories about stuff that happened to him recently on the job. When they came to take me back he kissed me, told me he loved me and that's the last thing I remember about the surgery itself.
The recovery room wasn't bad, the only hold up was the x-ray which they perform to confirm the catheter is in the right place. My nurse encouraged me to tell her when I needed anything for pain so we kept that well managed.
Now I'm home. Very sore, doing okay. For getting through this without embarrassing myself by crumpling into a pile and crying hysterically - tonight I'm going to get Wes to build me a fire and I'm going to drink some hot cocoa and then eat some of the glorious chocolate Anna sent me.
Next week - on to chemotherapy!
Posted by Farmgirl (Member # 5567) on :
((Belle)))
You're such a great trooper! Our prayers continue with you as you work through this and lick this thing.
I'm so glad today's procedure went well.
FG
Posted by ClaudiaTherese (Member # 923) on :
Wonderful, Belle. You are such a trouper.
(I think you deserve a foot massage tonight, too. *smile)
Posted by ElJay (Member # 6358) on :
I'm so glad the surgeon said what he did, and that it was helpful for you. That's about exactly what I'd want to hear, too. Congratulations on getting through it. . . and enjoy the chocolate. Posted by Noemon (Member # 1115) on :
I'm sorry that you're having to go through this, Belle, but at least it sounds like you're in good hands, which has got to be a comfort. You're holding up really well, too, which is no small thing.
Thanks for keeping us updated on what's going on with you--you know we're all thinking about you/praying for you/sending you positive vibes.
Posted by Boon (Member # 4646) on :
((Belle))
Posted by pH (Member # 1350) on :
I'm so glad the surgery went okay for you!
-pH
Posted by Jim-Me (Member # 6426) on :
Good news, ma'am... and continued prayers and well wishes from this quarter, as well.
Posted by Sharpie (Member # 482) on :
I'm so glad you are home and okay, and you definitely deserve hot chocolate by the fire at the very least!
Posted by ketchupqueen (Member # 6877) on :
I'm glad it went well.
Posted by JennaDean (Member # 8816) on :
I've been mostly lurking, but I've followed your story - I'm glad things went smoothly today. God bless you.
Posted by Shan (Member # 4550) on :
I'm so glad your husband was there and had the paperwork handled! and that the surgeon was so thoughtful! and that the procedure went smoothly!
Keep on truckin' *smile*
Posted by Anna (Member # 2582) on :
Belle, I'm so glad things went well for you. *hugs*
Posted by quidscribis (Member # 5124) on :
Add me to the list of people who're glad it went so well and that you're doing fine. Posted by Evie3217 (Member # 5426) on :
Your strength amazes me. Congrats on jumping another hurdle.
Posted by Belle (Member # 2314) on :
Ow.
I assumed that this would not be all that painful. I mean, it's just inserting something under the skin, certainly it won't hurt like my previous incision did. So when the doc sent me home with a prescription for pain meds I thought he was just covering the bases, I most likely would need only Advil for the soreness.
Wrong.
Once I got home the local anesthetic wore off and I realized that hey, this actually did hurt a good bit. From what I understand, it's not the incision to insert the device, but rather how they secure it. they have to sew into the chest wall muscles to keep it in place, and so everytime I move one of those muscles, I get a lot of pain. And you move those muscles a lot, ya know? The worst pain is when my upper arm or shoulder moves, now I know why he wanted to know if I was left or right handed before he did it.
But any way, I didn't want to come here and just whine. The bandages came off today, only steri-strips left and it's really cool. I mean I can feel it under my skin but you can't really see it. I had visions of walking around with some huge bump on my chest that was as conspicuous as a bolt on Frankenstein's neck, but it's nothing like that.
Oh, and if you sent me something and haven't gotten a thank you note - it's because I haven't gotten them mailed. They're written, but not mailed, but I hope to remedy that by the end of the week.
Posted by Kwea (Member # 2199) on :
Belle, it does get better, if never completely comfortable. Hang in there.
quote:He responded with "Everything is a big deal - anytime we do surgery, no matter how minor, it's a big deal. But we're going to take good care of you, I promise."
That is completely the right thing to say, because it is completely honest. Sounds like he is a good doctor, Belle.
Posted by Narnia (Member # 1071) on :
Keep taking those pain meds my dear! I'm glad that you're home and that Wes could be with you in pre-op. (((Belle))) You're doing just fine and I'm glad to hear that your spirits are up. Posted by Belle (Member # 2314) on :
Well, I got my flu shot today. Because there was such a shortage, they were giving them out to the elderly first, so I got the attention of the nurse and asked if I could get one because I was about to start chemo, and she said definitely. So I did get one, and it didn't even hurt.
I'm still very sore, mostly muscle soreness on the left side. It's my arm and shoulder that hurt, the incision site mostly itches. The soreness gets worse at night, and I don't need pain meds during the day, just right before I go to bed. Unfortunately, when the pain meds wore off last night, I woke up and couldn't sleep again. I didn't want to take another pain med and have trouble waking up on time, so I tossed and turned from 3:00 - 6:00 am.
Tomorrow I'm going shopping with my mom, she took a day off work so she could help me finish up my shopping before I started chemo. That should take care of everything, then all I have to do to get ready for Christmas is wrap.
Posted by Space Opera (Member # 6504) on :
Belle, I'm sorry I hadn't seen this till now. I'll be thinking of you and your family. Stay strong. Hugs.
space opera
Posted by Noemon (Member # 1115) on :
How are you doing, Belle?
Posted by Belle (Member # 2314) on :
Well I finished my first day of chemo.
Some observations:
As long as we're putting port-a-caths in people's chests, and making them pull down their shirts or unbutton them to access said port, we really should have separate treatment rooms for men and women. It wasn't too terribly bad, they had towels they would put over us for modesty sake, but still. Just a suggestion.
Another friendly suggestion, if the room is so cold that you have to keep blankets for the patients, maybe things would be easier if you just kept the room warmer in the first place.
But seriously, it wasn't too awful. Nor was it fun, mind you. When the nurse saw my cath, she asked how recent it was because it's horribly bruised. I told her it was put in last Tuesday and she said "You know it's going to hurt when I access it, don't you? I mean, I'm not gonna lie - I'll get it over with as quickly as possible - but it's gonna really hurt."
Yep, she was right. They sprayed something cold and freezing on it to numb it, but it still hurt. But after that stick the hard part was over. I just leaned back in my recliner and talked to all my fellow patients.
I was the only woman in the room who had her hair. Four women there had breast cancer. One man had colon cancer and was on the exact same regimen I was. Of course, it changed throughout, as people would get through and new ones would come start.
I'm wearing the pump and it's funny - when the pump activates (which is only about once a minute because it's a very slow infusion) it makes a noise that reminds me of a car CD changer. It makes me think of music and I get songs stuck in my head.
Tomorrow I go back for a shorter session, then Wednesday I go back and get the pump removed. Then we take one week off and then do it again.
They told me the side effects would take a while to manifest, so I'm not celebrating just yet. I feel fine right now, slightly queasy but that's because they pushed something at the end that I could taste in the back of my mouth. However, that weird side effect where I'm not supposed to touch things that are cold - that did manifest right away. I tried to drink a cold Diet Dr Pepper and when I picked up the can, my fingers went numb and pain started shooting through them to my palm. Very strange. So my hubby made me some hot chocolate, which as we all know, fixes almost anything. Especially when made by your loved one and sipped slowly in front of a fire also made by your loved one.
I'll keep you updated on how the rest of chemo goes. Good thoughts are appreciated though at the moment I think I'm doing well.
Love to all,
Belle
Posted by dkw (Member # 3264) on :
That (the cold-touching thing) is really weird.
Prayers and good thoughts continuing, of course.
Posted by Kwea (Member # 2199) on :
Best of luck, Belle...
Posted by Nato (Member # 1448) on :
I hope everything goes well, Belle.
Posted by Elizabeth (Member # 5218) on :
Good luck!
Posted by ElJay (Member # 6358) on :
That is very odd.
I'm glad she was honest with you about the pain. . . is that going to happen every time, or was it just since your port was new?
Stay strong! I'm glad Wes is so good to you. Posted by Shan (Member # 4550) on :
*Thinking of you and sending healing thoughts your way.*
Posted by whiskysunrise (Member # 6819) on :
Hope things go well.
Posted by romanylass (Member # 6306) on :
Praying it all goes smoothly and your side effects are mininal.
Posted by Mrs.M (Member # 2943) on :
I have been keeping up with this thread, but I've been a little too stressed to post any. I was so glad to read that the first session went as well as something like that can go.
You're always in my prayers.
Posted by breyerchic04 (Member # 6423) on :
((belle))
My 4-H leader started his chemo yesterday too (once a week for five weeks) and his radiation today (five times a week for five weeks). My mom stopped by after work and said he seemed to be doing pretty well, his wife is coping pretty well too, she's more or less blind so they have help coming in to do just about everything in the house, but they both seem optimistic.
Posted by Belle (Member # 2314) on :
I'm about to leave to get my pump removed. And I'm so relieved! The needle site is itching like crazy and I can't scratch it.
The at-home infusion was a breeze, the pump is small enough to fit into the pocket of my robe. When I'm out I put it in a plain black fanny pack and if anyone ever noticed the IV tubing snaking out the bottom of it and heading up my shirt - they never said anything.
Yesterday was a shorter day of chemo. No side effects other than the sensitivity to cold, but I'm told the other ones take more time to develop. I'll update again when I return from the doctor.
Posted by Anna (Member # 2582) on :
*hugs*
Posted by xnera (Member # 187) on :
Hi Belle. Just wanted to let you know that I've been following this thread. I'm glad things are going as well as they can. You're in my thoughts. Posted by Belle (Member # 2314) on :
It's out! Such a relief to have that airtight bandage off, it was really annoying.
The needle coming out didn't hurt as bad as going in, but it did sting a bit. Now I don't have to go back until the 19th.
My father is going to be here Friday and through the weekend, the Army has him assigned to teach some classes in Atlanta, and he can rent a car and drive over for the weekend. This whole incident really brought us close, his wife said she had to physically restrain him to keep him from jumping on a plane and heading straight to me when the diagnosis came about. She told him he would only be in the way and to wait and see if I needed him later.
He calls after any procedure or appointment to check on me. It's really nice, that we've had the chance to grow closer over the last year or so (in January it will be two years since we made contact again - for those that don't know, two years ago was the first time I spoke with my father in 30 years I didn't even remember him)
It's just one more base of support I have that I didn't before and that's never a bad thing.
Posted by whiskysunrise (Member # 6819) on :
That's great.
Posted by Derrell (Member # 6062) on :
I'm glad it's going well, so far. Best wishes for complete remission, and a long, happy life.
Posted by plaid (Member # 2393) on :
Yay! Glad it's going well so far. (Belle, I'd have sent you a card, but I've got some kinda of lingering cold right now, and I'm erring on the side of caution and don't want to send you an infected card...)
Posted by Mrs.M (Member # 2943) on :
I'm happy and relieved that things are going as well as they possibly can. I'm especially happy that you'll be able to enjoy the holidays without the yukky side effects.
Posted by Belle (Member # 2314) on :
Haven't been on this weekend much because I've been sleeping, and because my father was visiting.
Well, last week when I started chemo my blood count was fine. I don't think it is anymore. I'm sleeping all the time, very tired and my nose is spontaneously bleeding. Usually I wake up in the morning with it bloody. Sometimes it just bleeds during the day too.
I started taking my iron again, but I'm worried. Could I have that depleted of a blood count after just one treatment? What does that spell for me through the rest of them?
On a good note, the sensitivity to cold has gone away, as it was supposed to, so I can drink cold drinks again. I was sick of room temperature everything. And one can only drink so much hot cocoa. (I don't drink coffee.)
Posted by Theaca (Member # 8325) on :
You should probably ask to have your blood count and platelets checked so they know if you are going lower than they would like. There is always procrit available.
Also, iron won't help most likely. You aren't losing iron, unless your nosebleeds are heavy, and IF you are anemic the problem is the bone marrow temporarily shutting down production secondary to the chemo. Procrit works by making the bone marrow increase production of cells.
Posted by newfoundlogic (Member # 3907) on :
Sorry I didn't see this thread earlier, but I for one know what you're going through except frankly what I went through was worse. Because of the agressive nature of my cancer it had already developed four major tumors by the time they caught it. In addition, a more aggressive chemotherapy regimen was needed involving stronger drugs over a hospitalized 72 hour period, the side effects of which were felt immediately and lasted for almost the entire time period between chemotherapy treatments. You were also fortunate in my opinion to get the surgery out of the way at the beginning so that you were essentially cancer free from the start of your treatment and the rest is basically just to make sure it doesn't come back. Also, your prognosis was very good considering mine (which I was never actually told by the doctors and I didn't find out until very recently) was only 29% for a five year period.
I don't know if you're still having problems with nausea or if the medicines you've been give have been effective, but for what its worth I found Zofran to be the best medicine for chemo related nausea.
I hope you do well and I know how tough it can be because I'm still dealing with a lot issues now, so good luck with everything.
Posted by The Rabbit (Member # 671) on :
Belle, Congrats on surviving the first round. Get your hematocrit checked and ask your doctor if you need procrit or something similar. If you are anemic due to the chemotherapy, taking iron alone won't fix it. Theca is right.
[ December 12, 2005, 08:19 PM: Message edited by: The Rabbit ]
Posted by Bob_Scopatz (Member # 1227) on :
(((Belle)))
Thanks for letting us know how you are doing through all of the treatments. We're praying for you, and thinking of you often.
Posted by beverly (Member # 6246) on :
Hang in there, Belle. Posted by Rember (Member # 8273) on :
Sending hugs and prayers out for Belle and for newfoundlogic.
Posted by Belle (Member # 2314) on :
(((newfoundlogic)))
Posted by Farmgirl (Member # 5567) on :
Newfoundlogic -- we are SO glad to see you posting again -- we have been worried about you and started a few threads looking for you while you were away.
Not to take away from Belle's thread -- please think of starting (or resurrecting) a thread about your cancer so we can hear updates on how you're doing, as well.
prayers for Belle and for NewFoundLogic (I really wish I knew your given first name - I wonder what God thinks of me praying for someone by screenname)
FG
Posted by katdog42 (Member # 4773) on :
Belle and NFL,
I am a long time lurker of the board and have followed both of your cancer stories with concern. I just wanted to let both of you know that you have been included in many good thoughts and prayers. I know a great community of spiritual women and have asked also that they hold you in a special way during this time. Know of my continued prayers for you both.
Kat
Posted by newfoundlogic (Member # 3907) on :
FG, actually I posted a new thread a couple of days ago, but it must have fallen to around page 4 or so by now, feel free to bump it in order to avoid detracting from this equally important conversation.
Posted by Belle (Member # 2314) on :
Breathing = good. Not-breathing = bad.
Oxaliplatin,one of my chemo drugs, has a very rare side effect:
quote:Laryngeal spasm The area around the larynx (voice box) can be affected by oxaliplatin, resulting in a sensation of difficulty in swallowing and severe breathing problems. This can be very frightening but should only be a temporary side effect. This symptom may be triggered by cold and it is advisable to avoid cold drinks etc for a few days after treatment. It is important to let the doctor know if you have this side effect.
Trust me to be the one to have the rare side effect.
Let me tell you, if the sensation I had when my throat closed is anything like what asthma sufferers go through, I have newfound respect for all people with asthma. God bless you all.
It happened as I was going to my van, so right after I finished my chemo treatment. I decided to be all healthy and take the stairs, even though the stairs are not enclosed in the parking deck and obviously not heated. I didn't think the side effect could possibly take place so quickly after treatment, and didn't expect to have it at all, because, well, it's so rare.
At first I just thought I was really out of shape because I was breathing heavy at the top of the stairwell. Then I realized that no matter how hard I was breathing, no air seemed to be moving. I knew immediately what it was - and that I couldn't panic. Still, I felt my heart rate increase and the adrenaline rush because even if you logically know you need to calm down and breathe slowly you're body is screaming - "No air! No Air! Panic Time!"
I made my way to my mom's office, a few blocks away and they plied me with hot tea and I got it under control. So, now, I can't leave the house without having a scarf over my mouth. No fun.
Posted by dkw (Member # 3264) on :
Yikes! That does sound kind of like asthma, although it's rare that I have that serious an attack -- usually it's just the out-of-breath and wheezing. But when it is that bad, boy is it scary. *hugs*
Posted by ElJay (Member # 6358) on :
Belle, that is so scary. I'm glad you got it under control, and know how to avoid it in the future. Is this a three day round of chemo again?
*hugs*
Posted by quidscribis (Member # 5124) on :
(((Belle))), that's terrible. I'm so sorry you have to go through that. I've only had one attack that bad and it was scary. Posted by Uprooted (Member # 8353) on :
Wow, Belle, that sounds really scary, I can't imagine what it's like to live it.
Wishing you all "breathing=good." Hugs!
Posted by imogen (Member # 5485) on :
Ick!
I hope it doesn't happen again.
Posted by ketchupqueen (Member # 6877) on :
(((hugs))) Oh, dear. Yeah, that sounds like when my asthma gets bad, and it's not fun at all. If you have someone around if it happens again, ask them to breathe with you. Sometimes listening to another person's breathing (or having my husband hold me while breathing deeply and slowly) can help me keep that panicky feeling under control. Which is good, because, as you said, panicking and hyperventilating does not help the situation any. I hope they are able to make it go away for you.
Posted by Belle (Member # 2314) on :
kq, I actually called my hubby on the phone, and asked him to talk to me and keep me calm before I drove to my mom's. I needed to get past the worst of it before I was safe driving.
Being the paramedic that he is, though, first he asks "what's wrong?" and I said "I can't breathe!" and he said "Yes you can or you couldn't talk."
Thanks honey.
The only way to avoid it is to not drink anything cold or breathe in cold air. The nurse told me someone actually had an attack in August - they got in their car and turned on their air conditioner full blast and that was enough to trigger it. Some people are more sensitive than others, one guy there has been on oxaliplatin for five months and has never had any kind of breathing problem and doesn't need to cover his mouth even in the coldest weather.
The good news is that it only lasts about three days past the infusion of oxaliplatin, so I should be fine by Saturday. Then I'll be okay until I go back on Jan. 3rd.
Posted by ketchupqueen (Member # 6877) on :
quote:I said "I can't breathe!" and he said "Yes you can or you couldn't talk."
Oh, dear. I'd giggle if I didn't know how scary it is. It's true, though; I've had my passages seal so badly that I can't talk and my fingernails and lips turn blue. It's a lot worse than your run of the mill "I can't breathe" feeling. But that's no excuse, that's what you're afraid is going to happen when you feel like you can't get air! I'm sorry you have to go through this, and what a time of year to not be able to breathe cold air! But I'm glad it's temporary, and you'll have a reprieve.
Posted by Mrs.M (Member # 2943) on :
Oh, Belle, yuck! At least this is it for 2005.
I have to wear a mask because of Aerin and my face gets cold whenever I take it off. It is easier to breathe warm air.
Posted by Belle (Member # 2314) on :
My resolve is wearing down.
I told myself I would be brave and face chemo no matter what comes I'd get through it. And I still will, but man is it getting harder to remain upbeat about the process.
I'm so sick. I haven't eaten anything since breakfast on Wednesday except small amounts of chicken soup and crackers. My stomach is sore from all the throwing up. Several times I've wakened from a dead sleep in the midst of retching and had to try and run for the bathroom.
Yesterday I ran to the bathroom, my oldest daughter was standing outside the bathroom door when I emerged with a warm wet towel and my anti-nausea medicine. She now pretty much keeps up with the times and dosages and knows when I can have more. That's not fair - I'm supposed to take care of HER. Not the other way around.
The anti-nauseas make me sleepy, so I spend most of the day curled up on the couch. There's so much to do and no time - I haven't baked cookies with the kids, I've done nothing but the barest essentials to get us ready for Christmas and I'm having to rely on my mother and my husband and my kids to do the things I should be doing. And I want to be doing them, but I just can't.
I meant to wash my hair when I got up, then spend some time on the computer while it air-dried and you can see by the time stamp that it's afternoon - I've spent all day working up the energy to come do this. At least my hair is washed and will be clean for tonight's family gathering. I actually thought about not going, missing a family event at Christmas because I didn't want to get everybody down, but my mom said they'd feel even worse if I didn't come and if I can't eat the wonderful holiday dinner my sister-in-law prepared so what. No one's going to force me to eat.
My nose is bleeding again. The nurses said they couldn't do much and wouldn't start me on anything unless the counts didn't recover. Last round they came back up to almost normal, so as long as they keep bouncing back they won't give me anything else. Of course as time goes on, my body won't be able to recover from each chemo treatment so fast so I'll probably wind up on procrit eventually.
According to Sharon, who has more than 15 years experience as an oncology nurse, I'm just one of the "lucky" ones whose body really, really doesn't like chemo. I appear to be getting every side effect and getting it in the worst degree.
I slip my favorite pair of blue jeans off last night without un-zipping them. Of course, I'm not small so losing weight isn't a terrible thing, but losing it this way - essentially through starvation - is not a good thing. A friend of ours from church who went through chemo for testicular cancer ten years ago put his arms around me last Wednesday and told me I had to eat, that was one thing that I had to try and make myself do is keep nourished. But it's so darn hard!
Hate to be a downer, but wanted to let you guys know that I probably wouldn't be around. I think we can count on the days after chemo as being days when I won't be in touch. I do love you all, and I wish everyone a wonderful Christmas, Hanukkah, or whatever holiday you celebrate this time of year. You guys have been a source of strength and inspiration for me, and that is the greatest gift I could have received.
Love,
Belle
Posted by ludosti (Member # 1772) on :
(((Belle))) I'm so sorry that you're going through such unpleasantness. Please don't feel bad about your daughter taking care of you. As a daughter who has cared for her mother through physical problems many times (the first when I was 4), I welcome the opportunity to show my mother some small portion of the care she has shown me through my life. There is so little we can do when those we love are hurting, let your daughter do those small things she can that really help. Please don't feel bad about not doing "the things I should be doing". I know you want to do more than you are able to do, but right now the only thing you "should be doing" is allowing your body to go through the chemo and fighting the cancer as best you can.
I know you probably won't think of this Christmas as "the best Christmas ever!" but I hope that you and your family will be blessed with peace and comfort.
Posted by ketchupqueen (Member # 6877) on :
Belle, do you need the whole dose of the anti-nausea meds? I found when I was pregnant with Emma that a whole pill knocked me out, but half a pill, while it didn't make me entirely better, made me well enough to function, without the fatigue. Side benefit being I could take them more often. I don't know if it would work for you, but I hope something will get your through it. (((hugs)))
Posted by Boon (Member # 4646) on :
Belle,
I, too, have cared for an ailing parent. It's not the same, I know, because my dad didn't have cancer and I was an adult when he got hurt. We did almost lose him, though, from the infection in his bone.
My dad said it was hard, letting me take care of him. He said he basically felt as you do, that it was all backwards; it's incredibly difficult to rely on your children for basic care.
What I felt was that I loved him, and I'd do anything it took to keep him with us and to make things easier for him. It made me feel like *I* was fighting his illness with him, instead of just watching him struggle. *I* had a part in making him well. And if we had lost him, at least I'd have known I did everything I could to try.
What I'm trying to say is that you *are* taking care of her by letting her take care of you.
I pray every day for you and your family.
Love, Rayann
Posted by Wendybird (Member # 84) on :
((((((Belle))))))))) My thoughts and prayers are with you. Its okay to not be upbeat. Honestly chemo just sucks and its okay for you to let ppl know that. Your kids of course might not be able to see as much and may need you to be upbeat at times but don't try to be upbeat all the time. The reality is that cancer and chemo suck and its okay to admit it. If you can't eat maybe you can drink ensure or carnation instant breakfast or something with some nutrition in it. Its really hard. But you're a fighter and you're going to make it. All my prayers and love,
Wendy
Posted by jexx (Member # 3450) on :
Belle,
Thinking of you and your family today. Sending positive thoughts and gentle, warm hugs.
Your daughter is good to care for you, and you are good to let her. It's better to do something than nothing, you know? A horribly helpless feeling to just sit and watch your parent be ill. Even if she could only hold your hair back for you, it would make her feel better (take this from one who knows).
Yes. Do try to eat (or drink Ensure or something similar).
(((Belle)))
Posted by imogen (Member # 5485) on :
(((Belle)))
From what I've read of them here, your kids are amazing. I am sure that they are more than happy to take care of you for a little while.
I wish I could say something that would make you better, but there's really nothing.
You have all my best wishes and good thoughts.
Posted by sarcasticmuppet (Member # 5035) on :
Belle, your last post almost made me cry. I'm so sorry, angry, sad, etc. that you or anyone else have to go through such an ordeal. But it'll be worth it, you'll see. Prayers and good thoughts your way, as usual. Posted by Belle (Member # 2314) on :
Not a great day today at chemo. I saw the doctor and she said my platelet count was marginal. If it's under 100,000 they won't treat me, and it was 101,000. But it's fallen a good bit. My first chemo treatment the count was 202,000. The second one it was 186,000, and now it's fallen to 101,000. If it falls again like that I won't be treated next cycle, they'll give me an extra week to let the counts recover. If that continues it means stretching chemo out over a much longer period and that thought made me cry.
Also, my port was acting up. You're supposed to be able to draw blood through it. But the nurse couldn't get any blood out of it so she had to draw it from my arm. When it came time to infuse my oxaliplatin and leucovorin, the oxaliplatin is in a pump but the leucovorin has to go in through a gravity drip and it wasn't going through the port. The only way we could get it to work is if I laid curled on my right side, and breathed in deeply and held my breath. With my ribcage expanded, it would work and the drip would start but as soon as I exhaled it stopped. So I spent 2.5 hours on my side doing this breathing and holding routine until the drip was done.
Now my chest muscles are sore and my hip hurts from me lying on it in one position for so long. Wah. I'm such a whiny baby lately, I swear.
At any rate, I'm depressed, mostly about the counts. One thing that is on my horizon is the trip to Washington DC with my family and my Dad and stepmom. It's in early July and if only two treatments get delayed by a week it means I won't be done when I go. I really wanted to celebrate my end of chemo with that trip and to think I will have to go on vacation, probably sick and weak, and then come back and still have chemo treatments scheduled really upsets me.
I don't suppose anyone knows any natural remedies that will help build up a platelet count, do you? The nurses told me there wasn't really much I could do, that usually only time is what's necessary.
At least the falling platelet counts help explain the nosebleeds. I was telling one of the nurses about the frequent nosebleeds and told her that Christmas Eve I was wrapping packages and a drop of blood plopped down on the package. Of course, I immediately looked up to the ceiling because as every reader of thrillers knows, when a drop of blood plops down on something there's a dead body on the floor above you. However, there was no body, just my nose. So my Mom and I wrapped packages that night, me with tissue stuffed in my nose to keep the blood from ruining the packages.
The nurse told me that I was hilarious and that they loved seeing my name on the appointment sheet because I was so funny. Well, I'm glad my chemo is good for something, at least I entertain the nurses.
Posted by Wendybird (Member # 84) on :
((((Belle))))) I don't have any suggestions. This is so frustrating. I pray your counts will stay up enough to keep on the schedule so you can take that trip with your family.
Love and prayers -
Amber
Posted by Uprooted (Member # 8353) on :
Oh Belle, I am a whiny baby, you are going through hell and entitled to complain about it.
So sorry. Hang in there--I've seen friends really rallly after having to take a break to recover from low platelet counts. Wishing you all good things.
Posted by JennaDean (Member # 8816) on :
Thanks for the update, Belle. I don't post a lot but I've been following your story. Honestly, it isn't a funny one, but the "dead body on the floor above you" made me smile.
I understand why you felt you should be taking care of your kids, not them taking care of you. But think of it this way: your illness is helping your daughter learn how to serve. Teaching that is an important part of your job. And when you serve someone, your love for them increases. You know how you bonded with your daughter when she was a baby and you did EVERYTHING for her - now she's serving you, and it will increase your love for each other even more. It's all a good thing. Posted by ElJay (Member # 6358) on :
Oh Belle. . . It breaks my heart just reading what you're going through, I can't imagine how difficult it must be for you. I'm so proud of you for handling it so well. I'm sure you don't feel like you are, but from here you look just amazing. **hugs**
Posted by Belle (Member # 2314) on :
Hey, newfoundlogic, if you're reading this I asked the doctor if I could take anything for nausea that didn't make me sleepy and she prescribed Zofran. I remember you recommending it, so I'm hoping it works well for me.
Is anybody interested in seeing the port? My mom wanted to take some pictures of me when I'm wearing my pump. The picture will be nicely cropped so you don't see any parts of my anatomy you don't want to - remember it's in my chest - and it's probably only disturbing to those that are squeamish about needles. But it's kinda cool too, so for the curious I offer you the chance to see what it's like if you wish.
Oh I forgot a good thing - I'm losing weight, even through the holidays and I'm losing it steadily and slowly which is encouraging. I'm going to need new blue jeans soon, that's kind of exciting!
Posted by Dagonee (Member # 5818) on :
quote:Wah. I'm such a whiny baby lately, I swear.
((Belle))
Complain all you need to - you're certainly entitled.
I'm praying for you and your family, Belle.
Posted by Elizabeth (Member # 5218) on :
Oh, Belle, sweetie, you are so NOT a whiny baby!
"I understand why you felt you should be taking care of your kids, not them taking care of you."
Belle, this is a really tough one. You want your kids to be able to be normal, and for things not to be disrupted for them. But things are not normal, and their life will be disrupted.
It seems that this is what your daughter wants and needs to do for you. Make sure her life is as normal as possible otherwise, and it can only be a good thing.
Posted by The Pixiest (Member # 1863) on :
Belle, I'm sorry I've been so quiet but I want to let you know you've been in my thoughts and hopes (and would be in my prayers if I were the type to pray.)
If you need someone to talk to who's been through this I can give you the email or phone number of one of my best friends. When I first met him one of the first things he said to me was "I have terminal cancer and I have a year to live." That was 8 years ago and he's been cancer free for the last 6 years. If you want to talk to him, email me at p i x i e s t (a t) y a h o o (d o t) c o m and I will forward you his information.
Pix
Posted by Derrell (Member # 6062) on :
(((Belle)))
Posted by Brinestone (Member # 5755) on :
I never know what to say, but my thoughts are with you today, Belle.
Posted by romanylass (Member # 6306) on :
Belle, I'm sorry about the platelets. I hope it loks up soon.
Posted by beverly (Member # 6246) on :
Belle, I haven't been around Hatrack much--I have been so unaware of what you have been going through, both now and earlier in December. I'm sorry so many things have been going wrong! I pray that things will go better for you, and that you will find the encouragement and strength that you need to make it through the hardest times. You seem so very strong to me!
Posted by Belle (Member # 2314) on :
Okay, my stepmom wanted pictures so I had pictures made. If you don't want to see them, you don't have to but I don't think they're all that bad.
First, we have the picture I've labeled in my mind as "Does this chemo pump make me look fat?"
I mean, look at me, I look huge. Can you believe I've lost almost forty pounds? Imagine how fat I was before, jeez. Anyway, this is me with my pump in my little black pack around my waist.
Okay, now the scary needle picture but you can't really see the needle, it's under that yellow cap. See the condensation under the bandage? I guess that's from all the betadine and alcohol they use to clean my skin, then they put on this skin-tight dressing and it condensates in there. The scar above is from the surgery to insert the port.
Finally, you can see my little pump That is what goes in the little black fanny pack and it's loaded with my medicine. Pretty neat.
Posted by Uprooted (Member # 8353) on :
Wow, thanks for sharing with us. There's a man at my church carrying a pump around in a fanny pack right now, but I don't know him or his story really well. Have to admit to being curious about how all this works.
You look really healthy in your photo, I'd never know you'd been through all you've described!
Posted by JennaDean (Member # 8816) on :
I think it's the sticking-out tongue - it's hard to look really weak and sickly when you're sticking out your tongue. Posted by Space Opera (Member # 6504) on :
((Belle)) I'm thinking of you.
space opera
Posted by Elizabeth (Member # 5218) on :
Cannot look, sorry, Belle, but remember the plasmapheresis days and don't need to to empathize.
Posted by Farmgirl (Member # 5567) on :
You look just how I've always pictured you, Belle! (that is surprising, I'm usually way off).
Hope things are going better for you. I still keep you in my thoughts daily.
Farmgirl
Posted by Mrs.M (Member # 2943) on :
It's amazing how much less squeamish I am since Aerin. You look great, Belle, especially considering your condition.
Love and prayers to you every day.
Posted by accio (Member # 3040) on :
How are you feeling Belle?
Posted by Belle (Member # 2314) on :
I'm okay, accio - feeling a little sickly and a whole lot fatigued. Guess that's the low blood counts. I can't seem to get enough sleep.
The nausea is under control with the new prescription of Zofran, except that I have to be careful how many I take - my insurance would only pay for 12 pills per month. The cost? Almost $600 for 12 pills. So, I only take them when I really, really need them. Luckily they do work.
Got my statement from the doctor - my first round of chemotherapy cost over $16,000 - that was just for the three days of therapy and the medications. Again, I thank God for insurance.
My biggest complaint right now is the metallic aftertaste that is constantly in my mouth. Everything I eat tastes like metal. It's very annoying.
Posted by Belle (Member # 2314) on :
No chemo for me today.
My counts had not improved enough - they fell another 40,000 to 60,000. Anything under 100,000 is too low to receive treatment. So, I got sent home to rest a week and let my counts come back up. The only good news is that it wasn't low enough to require infusion, which can only be done in the hospital.
Because my red cells were also pretty low, I started Aranesp, which is a red cell booster apparently a lot like Procrit, which you may have seen TV commercials for. It's side effects are fatigue, and in some patients pain in the bones and joints. The nurse called it a "hot shot," because it burns going in and boy does it ever! I took it in my arm. The lady next to me told me to next time take it in my stomach but I told her she was crazy, I wasn't going to voluntarily allow someone to stick a needle in my tummy. I mean, Eww. She swore it burned a lot less if the shot goes in the abdomen and the nurse agreed with her saying most patients prefer the abdomen. I told them they were lucky I sat still and didn't hyperventilate when they poked a needle through my chest, to ask me to take a shot in my tummy was just too much. I'll let my arm burn, thank you.
I'm seriously bummed, I did not want to take a week off, because it only means more time tacked on at the end. I am grateful, however that I wasn't hospitalized but Carla, one of my chemo nurses told me that most people whose counts drop like mine do eventually do wind up needing transfusions and it wasn't really all that bad. Still, I'll avoid the hospital if I can.
Posted by ClaudiaTherese (Member # 923) on :
Belle, I hope those counts go right back up! Thank goodness no hospitalization yet.
Posted by Theaca (Member # 8325) on :
That's interesting, I didn't know aranesp hurt. Belle, diabetics take insulin under the skin in the abdomen and thighs all the time. I don't ever think of it as a shot in the tummy, I think of it as a shot in the fat. I don't know if that might help you think about it differently.
I think that's where Mrs M gave herself shots when she was pregnant, too.
Posted by Anna (Member # 2582) on :
I wish all the best to you, Belle. Posted by Dagonee (Member # 5818) on :
((Belle))
Still praying for you. Hang in there!
Posted by KarlEd (Member # 571) on :
(((Belle))) My mom has started a series of tests with her doctor to find out why she's chronically anemic. They've basically ruled out internal bleeding. She's going to a hematologist this week. She's a nurse and thinks the tests they are ordering is because they suspect some kind of cancer. The not knowing is the hardest part. Anyway, hope things improve for you! Posted by beverly (Member # 6246) on :
Goodluck getting your numbers up! Posted by Tante Shvester (Member # 8202) on :
When I was expecting my son, I had to give myself injections every 8 hours. The tummy is definitely less painful than any other site. And I had the freakiness of having a baby in there! But the shot goes into the layer of fat between the skin and the baby, so he never complained.
Posted by Nell Gwyn (Member # 8291) on :
(((Belle)))
I have no words of wisdom on this, but I hope things improve for you soon!
Posted by Derrell (Member # 6062) on :
(((Belle)))
Posted by Bob_Scopatz (Member # 1227) on :
Belle, we're praying for you. I'm really sorry I haven't been posting a lot in this thread. I went through this with my dad and it's bringing up a lot of memories. But I wanted you to know we are thinking of you.
Posted by Goody Scrivener (Member # 6742) on :
quote:Originally posted by Tante Shvester: When I was expecting my son, I had to give myself injections every 8 hours. The tummy is definitely less painful than any other site. And I had the freakiness of having a baby in there! But the shot goes into the layer of fat between the skin and the baby, so he never complained.
waiting for SoS to log in and complain... </tangent>
Belle, I believe that there are fewer nerve endings in the abdominal skin than in the arms, which might explain why it's a preferred site. My mom's on call tonight and on her way to a nursing home out in boo-foo-egypt at the moment, hopefully I can talk to her about it later tonight for you.
In the meantime, I wonder if there are non-medication steps you can take to help boost your counts. Like eating spinach and beef liver is supposed to help your iron levels...
Posted by Belle (Member # 2314) on :
So far I haven't had any problems with pain, thank goodness. I read some info on the web about the drug and the pain in the joints is a pretty rare side effect. Fatigue is the most common one. I certainly have that, or it's something else entirely because I napped this afternoon, and I still feel tired. One thing about chemo-related fatigue is that they tell you it's not relieved by sleep. That seems to be true.
The nurse did say that the white blood cell booster shots were much more likely to cause pain. And the woman there with breast cancer agreed with that assessment. So I'll just keep praying my white counts are okay!
I know the shot in the abdomen is a mental thing and I probably would like it better, but I don't know if I'm ready yet. Maybe I'll be brave next time. From what my nurse said, I'll probably need the Aranesp every cycle now. Maybe by the time we're done I'll have worked up the courage to get the shot in the abdomen instead.
quote:My mom has started a series of tests with her doctor to find out why she's chronically anemic. They've basically ruled out internal bleeding. She's going to a hematologist this week. She's a nurse and thinks the tests they are ordering is because they suspect some kind of cancer.
I know that the doctors all said they were shocked I hadn't come to the doctor before because I was so anemic, so I know that anemia can at least be a sign of colon cancer. I hope she learns some answers really soon - the not knowing is scary, but the sooner they find out the better. Let us know how it goes with her, I'll definitely keep you guys in my thoughts.
In only recently had the strength and courage to really look at colon cancer and was shocked to discover it's the second most lethal cancer - only lung cancer kills more people each year. And had my cancer just been one stage higher my outlook would have been much, much bleaker - considering that my cancer had perforated the bowel wall it was a shock to the doctors that my lymph nodes were clear usually when there's a complete perforation into whatever layer mine was in it almost always indicates metastasis. :shudder:
I got to sleep through all the worry after the surgery and before the pathology report came in, by the time I had all the morphine out of my system and was alert we already knew the good news. I cannot imagine the terrible 36 hours my husband went through waiting for that report.
[ January 16, 2006, 09:53 PM: Message edited by: Belle ]
Posted by Elizabeth (Member # 5218) on :
Thinking of you, Belle.
Posted by Belle (Member # 2314) on :
So they did treat me today, my platelets were back up to 211,000. Good job, little platelets.
My hematocrit was 34, still needed a shot of Aranesp, they give me a shot anytime it's under 36.
I went to the store after I left chemo and that was a mistake, I got very sick and wound up barely making it out of the store and then getting sick in the parking lot. Yuck.
One new thing I've noticed over the last week is I seem to be losing an awful lot of hair. Every morning when I wake up and brush my hair, it comes out in clumps. Still with the roots attached. My hair was cut last week and my hair dresser noticed that a lot of hair was falling out when she combed it. So I asked the nurse and she says "oh, yeah, you'll definitely lose hair on this regimen. Not as much or as fast as others, you'll probably not wind up bald, but you'll definitely keep losing it."
Wonderful. I'd almost rather go completely bald than have it get really thin and patchy. It's the same story as all the rest of this chemo - most people don't lose that much hair but there are a few that react to it more strongly and I'm apparently one of them. There was a man there today who was on his 20th infusion of oxaliplatin, the drug that causes the extreme sensitivity to cold, and he has never had one incident where cold bothered him, not one. Me, today, after getting an infusion - the first one in three weeks - I felt my throat begin to close when I breathed in the air in the freezer at the grocery store. See, I needed frozen broccoli and it was way up high and being short, I had to practically step inside the freezer to get it.
Posted by Elizabeth (Member # 5218) on :
Oh, Belle. What a hard road you are traveling!
Posted by Tammy (Member # 4119) on :
((((Belle)))) I haven't been dropping by that often, this is the first time I've noticed this thread.
You're amazing!
My thoughts are definitely with you!
Posted by Tammy (Member # 4119) on :
Posted by Tante Shvester (Member # 8202) on :
That stinks. That really stinks. You have my sympathetic cyber shoulder available to you to lean on when you like.
Maybe you can go hat shopping. I get lots of hats from the TLC Catalog, and I don't even have hair loss or cancer. I just like the comfortable, no-nonsense, suitable-for-everyday hats. And the prices are reasonable, too.
Posted by Belle (Member # 2314) on :
Today was my third time to go to chemo and get sent home because my platelet counts were too low for treatment.
the nurse said she'll have to clear it with the doctor, but more than likely, I will be on a 3 week schedule now, my body needs two weeks off instead of just one between treatments.
You have no idea how upsetting that is. For one thing, it just means the whole process is drug out even further. The biggest hassle will be the kids - now that I won't be finished until July, that means I've got to arrange child care for the days I go into treatment once they're out of school. And, our family vacation to Washington DC is the week of July 4th. I was hoping to be able to celebrate the end of my chemo on that trip, but no such luck. I'll have to receive my final treatment the week after we get back.
I asked the nurse if there is anything we can do to keep me on schedule and she said not really. Were it my red blood cells or my white blood cell counts we could take boosters for them, but not for platelets. She said there is a shot out there for platelet boosting but it isn't getting widespread use because of its side effects - one of which is anemia, which exarcebates the problems people are already having. Her words were "Dr. A is not a fan of the shot." So...the best way to keep treating me is to allow me an extra week between treatments for my body to recover.
They also don't normally transfuse for platelets, something about the body building up a resistance to the transfusions. CT, Theaca, that sound familiar at all?
My platelets today were 40,000. Normal is 150,000 plus. Usually, I recover to back over 100,000 when I get the extra week, so the best way to handle it is to let me just recover on my own.
I have to admit, I cried on the way home. I just want this to go smoothly, and to be over as quickly as possible, and now I'm adding an additional seven weeks to my total treatment time. Not what I wanted.
And remember that neck pain I was having? It's definitely related to the Aranesp shot. I got the shot today, but no chemo, and within four hours the severe neck pain developed. The nurse said she was at a loss to explain it, it's not one she's heard before, but that she will definitely mention it to the doctor for me.
Posted by Elizabeth (Member # 5218) on :
I am so sorry, Belle.
Posted by Tante Shvester (Member # 8202) on :
Sigh. What can I say? This stinks, but, G'd willing, it will all be for the best. ((Belle))
Posted by ketchupqueen (Member # 6877) on :
(((hugs))) I'm so sorry. I'm still praying for you, and hope the year will fly by so this will soon be but a memory and you can be your normal self.
Posted by Astaril (Member # 7440) on :
Best of thoughts, Belle.
Posted by Evie3217 (Member # 5426) on :
(((Belle))) We're all thinking about you. Good luck, and stay strong. You're an inspiration to us all.
Posted by Uprooted (Member # 8353) on :
Oh Belle, what a blow it must be to have the light at the end of the tunnel seem further away. My prayers are with you.
Posted by Derrell (Member # 6062) on :
(((Belle))) I hope it gets better soon.
Posted by Synesthesia (Member # 4774) on :
I'm sorry.......
Posted by dkw (Member # 3264) on :
I'm sorry that this will be dragged out further, but I'm glad your distressing news was not worse.
You scared me with your title change.
Added: I didn't mean this to sound like I'm telling you to cheer up since it could be worse -- it's still rotten news. Posted by JennaDean (Member # 8816) on :
Oh, I know how you were hoping to be done by July. I'm so sorry. Will pray for you.
Posted by Bob_Scopatz (Member # 1227) on :
(((Belle)))
Hang in there. I'm so sorry this isn't going according to the original plan, and I hope you get some good news soon.
Posted by Shan (Member # 4550) on :
(((Belle)))
My thoughts and prayers are with you.
Posted by Ela (Member # 1365) on :
quote:Originally posted by dkw: I'm sorry that this will be dragged out further, but I'm glad your distressing news was not worse.
You scared me with your title change.
Added: I didn't mean this to sound like I'm telling you to cheer up since it could be worse -- it's still rotten news.
What dkw said.
Posted by quidscribis (Member # 5124) on :
(((((Belle))))) I'm sorry it's so sucky. I'm still praying for you.
Posted by Belle (Member # 2314) on :
I've edited so the title is more reflective of the actual news - slightly distressing.
I must admit I was indulging in some self-pity earlier, I just really wanted to get this over with. But, hey...at least I will have a week that I actually feel better and have some energy in between treatments now.
Posted by Icarus (Member # 3162) on :
(((Belle)))
You're in my thoughts and prayers.
Posted by Anna (Member # 2582) on :
Belle, you have every right to self-pity of it's how you feel. I'm sorry I can't do anything else than this : (((Belle))).
Posted by Nell Gwyn (Member # 8291) on :
I'm sorry you've had this setback. (((Belle)))
At least it sounds like you've found a silver lining? I'd probably want to get it all over with too (I know my mom did), but given the choice between 5 months of feeling like absolute crap constantly or 7-8 months of crappiness interspersed with breaks of normality... Having a few breaks might be really nice.
(((Belle)))
Posted by romanylass (Member # 6306) on :
I'm sorry things aren't going according to plan, Belle. I'm continuing to pray for strength for you and your family.
Posted by ClaudiaTherese (Member # 923) on :
I'm sorry for the difficult news, Belle.
Posted by Mrs.M (Member # 2943) on :
Belle, in your situation, self-pity is not an indulgence. I'm so sorry for this setback, however minor (it's not really minor, but it's not major, either - semi-minor).
BTW, Richmond is only 2 hours from DC (hint, hint).
Posted by whiskysunrise (Member # 6819) on :
(Belle)
Posted by Dagonee (Member # 5818) on :
((Belle))
Posted by Rich Lewis (Member # 9192) on :
(((Belle)))
Posted by Belle (Member # 2314) on :
So today we confirmed with the doctor that I would have to go on a 3 week schedule now. I had chemo today, and I'll take two weeks off before I come back.
Right now they say my red cells are doing all right, if they continue this way I won't need to start taking the Aranesp red-cell booster shots at home which is a good thing. Unfortunately, my white count was low, so they may be adding a shot of Leupigen (sp?) which everyone who has had it tells me is a very painful shot. Not when it goes in, but later - it stimulates the bone marrow and causes bone and joint pain.
Good news is that my doctor was finally back - she had been out for three weeks due to surgery. I told her about my university flunking me on my classes because I hadn't "proven" that I was unable to attend classes last term. She got livid. A doctor on a rampage is a sight to see. She wrote a very succinct, pointed letter telling the academic appeals office in no uncertain terms that I was too physically ill to attend classes and I should be granted an emergency medical withdrawal from my classes. She told me that it would be faxed to the appeals office before I left that day, and it was. I also have the original which I'll mail in after making a copy for my files.
She got both her undergraduate and medical degree from UAB, and she told me "They are giving you trouble because they don't want to refund your tuition. But I'm not going to let them treat one of MY patients like that. If they give you any more trouble, I'll call them personally and I still know people there, I can make phone calls up the chain if need be."
I feel confident my appeal will be upheld, and the F's will be changed to W's on my transcript. She didn't seem like she was going to accept anything less. It was if what they did to me was a personal insult to her or something, it was almost funny how angry she was at them. But I'm glad she's on my side. Posted by ketchupqueen (Member # 6877) on :
Oh, it's nice to have someone to go to bat for you. I'm glad.
Posted by ClaudiaTherese (Member # 923) on :
Nice to see power used well. Awesome fighting of the good fight -- both you and her.
Posted by sweetbaboo (Member # 8845) on :
Whew! I'm glad that you'll be able to check that part off your brain. One less thing to worry about is always a good thing.
I was just thinking about you and hoping all is going well. You sound like you're hanging in there today and I'm glad.
Posted by Uprooted (Member # 8353) on :
Yay for the rampaging doctor!!
Posted by Goody Scrivener (Member # 6742) on :
Yeehaaa go doc go!
Keeping my fingers crossed that you won't need that white cell booster shot.
Posted by mackillian (Member # 586) on :
What a good doc Posted by quidscribis (Member # 5124) on :
*laughs* Belle, I think I love your doc. Posted by Nell Gwyn (Member # 8291) on :
Wow! That doc's definitely a keeper. That's just awesome. Posted by Dagonee (Member # 5818) on :
Yaaaaay!
Posted by Shan (Member # 4550) on :
What a good doctor! I'm so glad, Belle!
Posted by Mrs.M (Member # 2943) on :
I'll pray that you don't have to have the white cell shot, Belle.
Your doctor sounds awesome. I almost feel sorry for the jerks at UAB. Almost.
Posted by Belle (Member # 2314) on :
No white cell shot. She wants to see how I do on the 3 week schedule. Plus, she said my white count may have been rather wonky due to the strep infection anyway, so this might not be a true indicator.
Only bad thing about this session was I had some bleeding at the needle site, no one knows why. Probably just the needle getting bumped around. they were able to clean it up, flush the port and make sure the port was functioning normally, and it was, so the bleeding was no cause for concern.
My nurse found a stitch by my collar bone where my surgeon had put in the scope for my 2nd port operation. The stitch never got removed because I never made a follow up appt. with the surgeon. She told me to see if Wes could take it out for me at home, and if he couldn't she would do it. So last night Wes took it out for me, even though it had been in over a month, he was able to remove it without any pain. I went back today and the nurse checked to make sure it was all out and asked me if it hurt, I said no. She said "Whew. That's the reason I suggested your husband do it, I didn't want to hurt you. I feel like I never do anything but jab you guys with needles and cause pain!"
No word yet from UAB. I'm hoping to hear something next week.
Posted by Olivet (Member # 1104) on :
That's good news, hon. I'm glad the doctor is going to bat for you with the school. I was ... I mean, my jaw was hanging open that cancer with all the chemo and stuff wasn't enough to prevent you from attending classes. So ridiculous.
Posted by Belle (Member # 2314) on :
So everything is straightened out with school. Today was my 7th treatment, so I'm past the halfway mark.
They came out with a new protocol for administering oxaliplatin, they infuse it in 500 ml of D50 instead of 250. Same amount of medicine, just diffused through a larger amount of liquid. They said it was supposed to help with the cold sensitivity. I think they were right, because I could drink cold drinks out of the fridge. If that is the case, if the new way of administering does take that side effect away, I'll be so grateful because I'm sick of drinking things at room temperature.
Tomorrow I see my doctor again, I don't know that I'll have much to talk to her about, except the neuropathy that continues to steadily grow worse, and I'm also starting to have some skin peel off my hands and feet. That's a side effect of the chemo, and if it gets too bad we may have to stop treatment early. Apparently in some people the neuropathy become permanent, so they don't want it to get to the point where it's crippling you on the chance it won't go away after treatment is stopped. The nurse told me most people stopped this chemo early for either neuropathy, or the hand/foot problem with the pain and peeling skin. She said in fact, few people make it to the 12th treatment because of that. So we'll have to see what the doctor says. Right now the neuropathy and peeling is under control, I can deal with it.
Posted by Anna (Member # 2582) on :
(((Belle))) I'm glad things seems to work out.
Posted by ketchupqueen (Member # 6877) on :
Lots of prayers and love coming your way. Glad the school stuff is straightened out! Posted by Belle (Member # 2314) on :
I went to get treatment today and got sent home. I have sores in my mouth. The moment I told the nurse about it she said she'd page the doctor but more than likely she'd send me home.
By the time the doctor returned the page they had my counts as well, and my white counts were low. So I get another week off without treatment and have two prescription mouth rinses called in to help the sores heal. I didn't know mouth sores were such a big deal. The nurse said if they don't get better I may need to be treated with either antibiotics or anti-virals depending on what type of sores they are.
I cried on the way home. I thought this schedule was going to work out well, it meant that Wes would always be off on the Tuesdays when I had chemo (Tuesday is the day I have two dance classes and gymnastics, which requires me to be gone from home running around from 2:30 to 7:45 - not a good thing on treatment days), and I'd be in a good week when we went to Washington DC but now this messes it up terribly. In fact, if I stay on the current schedule and there are no more delays, Wes will work EVERY Tuesday that I have treatment.
And, if there are many more delays it will affect me returning to school in the fall - school starts in August. I'm already well into July before finishing treatment now, it won't take many more delays to push me into the time when school is supposed to start.
So yeah, I'm upset. I know it's common, and there will always be setbacks, but we were doing so well with the three week schedule, that I was hoping it would keep going that way.
Posted by pH (Member # 1350) on :
*hugs*
What are the sores like? Are they canker sore type sores? Usually, mouth things heal really, really quickly with good mouthwash.
-pH
Posted by Tante Shvester (Member # 8202) on :
((Belle)) Posted by Belle (Member # 2314) on :
Yeah, they are like your normal type sores inside the mouth, what I would have commonly called mouth ulcers.
They hurt, especially when you eat anything salty or brush your teeth. Apparently there is a risk of the sores spreading and affecting my throat as well, because one of the prescriptions she called in I'm supposed to swallow, so it can coat my throat as well. The other one is a typical swish and spit out type mouthwash.
The only mouthwash I have at home currently is Listerine, but she told me not to use it because of the alcohol content.
On a good note, I registered for summer classes. I'm going to take two American literature courses online, so I don't have to worry about their being any classes on chemo days. And, one of the instructors is the same one I had when I took British lit online last summer, and she likes me. This will finish all my lower level lit courses, and there's one more pre-req I have to take (a research methods class) before I can take the higher level lit courses for the English major. I plan on taking that one in the fall.
Posted by romanylass (Member # 6306) on :
I'm sorry you've had another setback. I hope your mouth heals soon.
Posted by Nell Gwyn (Member # 8291) on :
(((Belle))) I'm sorry your plans got messed up. Perhaps things will still somehow end up righting themselves to a way that works out better. And I hope your sores heal soon! Ouchies!
Posted by Mrs.M (Member # 2943) on :
Oh, Belle. I am so sorry. Setbacks are particularly nasty because you never really expect them and the longer you go without one, the harder it is to deal. I'm going to keep on praying and sending my love.
Posted by Kwea (Member # 2199) on :
Stay strong, Belle. I know it isn't easy but it will be worth it, peeling skin and all.
(((Belle))
Posted by pH (Member # 1350) on :
Yeah, the alcohol can definitely dry out your mouth. I keep an extra mouthwash because of that, a peroxide one. It's tasty, actually. But if they're just regular mouth sores, they should heal up really quickly. And it's great that you can take online classes!
-pH
Posted by The Rabbit (Member # 671) on :
Arrrg!!!
Posted by Telperion the Silver (Member # 6074) on :
Your doctor is cool. ((Belle))
Posted by Wendybird (Member # 84) on :
(((Belle))) Such a frustrating journey. I hope and pray it all works out somehow for you.
Posted by Belle (Member # 2314) on :
Today I had an allergic reaction to one of the drugs I've taken, oxaliplatin. I went into anaphylactic shock and I can honestly say I've never been more scared in my life. I knew that if the nurses couldn't reverse the reaction I was going to die.
It got dicey for a while. The first round of drugs didn't work - I started to feel better, the tightness in my chest relaxed and I could breathe again, but then the reaction kicked back into gear, my heart raced and my chest closed up again. So they had to treat me with another round of drugs and one nurse looked at the other one and said "Go get Ruth, NOW." (Ruth is the first name of my physician.) I knew she was rattled because she never calls her by her first name around the patients.
Something they gave me, a steriod I think, made me throw up, so I was trying to catch my breath and vomit at the same time. Finally, a third round of benadryl and some other stuff that my doc ordered (I was too out of it to hear and process all the names of the drugs) did the trick.
By that I mean the chest tightness began to loosen and I began to be able to breathe. They were bringing oxygen, but once the drugs kicked it they said I didn't need it because my oxygen saturation had returned to 95%, I don't know how far down it got. After a few minutes it was back up to 98%.
The nurses saved my life today. If they hadn't been quick on the uptake, and gotten the first round of drugs into me so fast, I don't know what would have happened. I've been taking this drug ever since my first chemo session and had no trouble like this before. There was no warning, I just felt my heart pound and my chest begin to tighten so I just called out "Sharon, could you check my pulse, it seems fast."
She immediately turned off the infusion, before doing anything else, to prevent any more of the drug going into my system and felt my pulse. She looked at me and said "It's racing 90 miles an hour and you're flushed." She then dropped my hand and called for another nurse to bring benadryl.
There were three nurses, all of them were immediately there with me, and didn't leave. While Carla ran back and forth for drugs, Jennie and Sharon stayed at my side. Sharon held my hand and talked to to me, reminding me it was important I stay calm. At one point I looked at her and said "If you can't stop this I'm going to die." She just squeezed my hand and said "We can reverse this, just hold on, it will get better soon." It took about an hour and a half for all the pain and tightness in my chest to ease. They made me stay there for a while, until I felt better, then they continued infusing me with the other drug - not the one I reacted to. They sent me home on the pump like always and told me that I would have to do a regimen with 5-FU and leucovorin only from here on out. No more oxaliplatin.
That's good, because the oxaliplatin is the one that gives me the worst side effects. That, and taking it again would probably kill me. The doctor said that this type of thing is rare, but that if patients do react to oxaliplatin it's usually not until they have a lot of it in their system, normally around the 7th or 8th infusion. Today was my 8th.
I'm doing okay now, I'm still a little shaky. Wes and my Mom are going to go back and get my van, I drove myself to treatment but couldn't drive myself home. Let me tell you, three big doses of benadryl followed by a chaser of phernergan will mess with your head. Once everything was calm and we could laugh again, I told the nurses I should enjoy it, people pay good money on the street for the kind of high I had going. Posted by Shigosei (Member # 3831) on :
I'm glad you're ok. Scary indeed!
Posted by ElJay (Member # 6358) on :
Oh, Belle! I'm so glad you're alright. I went into anaphylactic shock once, and it was the worst physical experience of my life, and absolutely terrifying. I'm so glad you had such good care. It seems you're getting all the "rare" side efefcts. . . I hope now that you're off the oxaliplatin that will stop.
*hugs* Again, I'm glad you're okay.
Posted by The Rabbit (Member # 671) on :
Ohh Belle, I'm so sorry this is happening to you. It seems like everything possible is going wrong with your Chemo.
Let's hope that your string of bad luck with side effects will be balance with some really good luck and a full recovery.
Posted by Narnia (Member # 1071) on :
(((Belle))) So glad you're ok. *relief*
Posted by ludosti (Member # 1772) on :
Allergic reactions (especially to drugs - since they can just suddenly manifest) are definitely scary things. I'm glad you had such good nurses there to help get you through it. Posted by Primal Curve (Member # 3587) on :
Jimminy Christmas! Thank goodness for good nurses.
Posted by Elizabeth (Member # 5218) on :
Oh, how frightening, Belle!
Nurses are really amazing. I wonder how many people who have not beeen hospitalized realize just how much they do.
Posted by Uprooted (Member # 8353) on :
Thank God for those nurses.
Posted by theresa51282 (Member # 8037) on :
Wow that was scary to just read about. I am so glad that you are ok. I hope things go smoother for the next bit of treatment.
Posted by ClaudiaTherese (Member # 923) on :
I'm so glad you are okay, Belle. Yay for nurses!
Posted by Dagonee (Member # 5818) on :
quote:There was no warning, I just felt my heart pound and my chest begin to tighten so I just called out "Sharon, could you check my pulse, it seems fast."
Thank goodness you were quick on the uptake yourself. And yay for your nurses, indeed!
((Belle))
Posted by Leonide (Member # 4157) on :
I'm impressed you had the presence of mind to even *ask* the nurses to check your pulse -- i know when i'm in a hospital setting my nerves are always completely shot, i dont know if i would have picked up on my heart racing, or been able to process it as a negative thing, since i'm usually so pre-occupied.
(((Belle)))
Posted by Tante Shvester (Member # 8202) on :
Good golly, you can't seem to catch a break, honey! That must have been the scariest experience ever. Thank G'd you are OK!
I don't know what else to say.
Posted by jeniwren (Member # 2002) on :
I'm really glad you're okay, Belle.
Posted by dkw (Member # 3264) on :
Add me to the "glad you're okay" list.
Posted by Noemon (Member # 1115) on :
Man. Add me to the list too. I'm glad you've got such skilled people taking care of you, Belle.
Posted by Bob_Scopatz (Member # 1227) on :
(((Belle)))
I'm glad you have such skilled people looking after you.
Posted by imogen (Member # 5485) on :
Another for the list.
(((Belle)))
Poor you! But thank heavens for the nurses and your doctor.
Posted by Derrell (Member # 6062) on :
(((Belle))) I, too am glad you're still here.
Posted by Anna (Member # 2582) on :
Oh my, Belle, that was scary. I'm glad you're okay and the nurses work so well.
Posted by Mrs.M (Member # 2943) on :
Oh, Belle, what an ordeal you're surviving. I so wish you could be the one cancer patient who sails through treatment with no complications, but I'm grateful that you're coming through the complications. Not a day goes by when I don't think about how you're doing and pray for you.
BTW, Aerin finally fits into her jumper and we get so many compliments on it. People ask me where I got it and I proudly tell them that it was hand-made especially for Aerin.
Posted by Kwea (Member # 2199) on :
I am glad you are OK, and you will be in my thoughts and prayers tonight, and in the future.
Posted by Space Opera (Member # 6504) on :
((Belle)) I'm always thinking of you.
space opera
Posted by Boothby171 (Member # 807) on :
(((((((Belle)))))))
Stay brave...
Posted by JennaDean (Member # 8816) on :
Oh, Belle, how scary! I'm so glad the nurses were able to help you.
What does that drug do, anyway - the one you reacted to? Is it something that will be replaced by another drug? Or will you just ... do without whatever it does?
Posted by Belle (Member # 2314) on :
Jenna, it's a cancer drug, and it's meant to kill cancer cells. I would be more worried about having to discontinue it if my cancer had spread, but since it hasn't, I feel confident. Besides, oxaliplatin, according to my doctor is a "mother" - a drug that really is hard on the body and one that few people ever complete the full treatment schedule with. Either because they have a reaction like me, or the side effects are too much to manage.
It's a relatively new drug, and prior to it coming out, the gold standard colon cancer treatment was 5-FU and leucovorin - the exact regimen I'm on now. While oxaliplatin has added to the success rates, there is still a good track record with the 5-FU and leucovorin regimen, so it's not as if I'm getting nothing.
I feel okay about it, I still feel confident that we've got this cancer licked. I just need to finish the 5-FU/leucovorin treatments and the doc says my long term outlook is still very positive.
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