Thursday, January 13, 2011

Good news and changes

Yesterday I went to MD Anderson for my Avastin infusion and to visit with Dr. Green. It was a chaotic morning at home. We had a low tire on the van, our tire gauge quit working, the oil was low and we didn't have any quarts in the garage, and Christa discovered as we were walking otu the door that wasn't able to print her science assignment that was due that day nor did she save it . All of this before we left home this morning. It wasn't a good start to a long day!

But it got better. Even after leaving a little late, dropping off the kids at school, stopping at Wal-Mart for oil, adding oil to the van in the WM parking lot (I guess we have some redneck in us!) and driving through for our usual Burger King breakfast; traffic wasn't too bad and we ended up being just a few minutes late for my 9am labs. We didn't wait long and were in and out pretty quickly. We moved on to the "green suite" on the 8th floor and checked in early for my 11am Avastin infusion appointment. We settled in to a comfy sofa and watched a "She's Out of My League" on our portable dvd player -- funny movie! Really took our minds off of why we were there. They called me in early for my infusion, and my nurse got the IV in on the first attempt -- Yay! We finished watching our movie while I was being "infused" and we were all done in time for my 12:40 appointment with Dr. Green. We headed to the breast center and waited just a short time to be seen by Kristen, Dr. Green's nurse. My "interviews" with Kristen are taking a lot longer than they used to ... she asks and I tell all about the side effects I've been experiencing, so that takes a while. Prior to just a few months ago, my answers were "no" to all questions, since I was doing well and feeling good for so long. Maybe one day I'll get back to that and we can breeze through the side effect questionnaire!

Anyhoo ... my blood counts were just slightly low, nothing to be concerned about. Dr. Green came in, accompanied by a pharmacist and a student pharmacist, to discuss Avastin side effects and possible treatment options. It was quite a crowd for the small examing room! Dr. Green said that the Inderal (blood pressure med that she had prescribed to prevent the Avastin headaches) dose was too low, and she recommended that we up it to a stronger and long-acting dose, every day and not just the 5 days surrounding my Avastin infusion. I was okay with that. Anything to prevent the headaches! Then she said that another option would be to get OFF the Avastin. For one, the FDA had decided to remove Avastin's approval to treat breast cancer. Although the change was not official, it was more than likely to be official within the next few months. Two, my tumors had "melted away" (as Dr. Green likes to say) after being on only Xeloda for three weeks, before I even started on Avastin. Given the potentially serious side effects associated with Avastin use, the multitude of actual side effects I was having from it, and also taking into consideration the studies that showed it not to prolong life for more than about 3 months, Dr. Green told me that she did not feel it would be detrimental for me to get off of it entirely. Danny and I were more than fine with that, as we were both uncomfortable with me continuing on with it. It was a relief to hear Dr. Green suggest that I get off of it, because neither Danny nor I was willing to request it. We both have complete trust in her and in MD Anderson overall, and we weren't about to try to manage my treatment regimen ourselves!

So we left MDA relieved that yesterday's Avastin infusion was my last, but also kind of bummed that I had to get that one last dose. If I had seen Dr. Green before my infusion, I might not have received it. Although I may still have headaches, etc. in the next few weeks, it does feel good to know that that will be the end, once yesterday's dose gets out of my system.

Meanwhile, my hands and feet seem to be feeling worse than ever (Xeloda side effects.) Although they felt much improved during the latest week "off," as soon as I got back on, which was just 3 days ago, it seemed like the intensity of discomfort immediately went up. It's debatable if it was the week off that caused the improvement or if it was my decreased activity that helped it. It was during my week last week off that I had two severe headaches which put me in bed for an entire day -- off my feet, and not doing anything with my hands (well, except for iphone use and email checking -- can't do without that!) Danny and I are both analyzers by nature. In case you haven't noticed ... we try to figure out what could be causing what, when the side effects happen in relation to treatment days, activity, etc. But it can't always be figured out, quantitated, organized into a predictable schedule, or filed in a nice neat folder! Such is life, I guess. But I digress ... last night I woke up several times feeling intense pain and burning in my hands. Never had that before! They are hurting even while at rest and not being used. As instructed, will have to skip today's Xeloda dose and report the change to Dr. Green. After examining my poor unhappy hands at yesterday's appointment, she had told me to take 10-12 days "off" after this current 7-day "on" cycle, to give them some extra time to heal. But at this level of discomfort, I fear I won't even be able to complete the remainder of my 7 days on.

This morning, I am home, "taking it easy" doing laundry & dishes, and getting ready to go babysit my g-kids for a short while while my daughter goes to a doctor's appointment.

It's tiring to even write about all of my cancer woes, but I blog to document my cancer journey. Why, I'm not totally sure. Maybe so my kids will someday know what I went through. They don't read it now, but they may want to when they are older. Have made it one of my new year "to-do's" to blog more often and include more than just my cancer. I am way more than my cancer, but sometimes it does seem to overshadow everything else and take over my thoughts. I stay busy with day-to-day stuff, running the kids to their various activities, failing to adequately take care of the house, managing the bill-paying and finances of both home and business, and all that comes with owning my own business and having a husband and 3 kids at home. Whew!

Wednesday, January 12, 2011

Ups & Downs

I am sorry that my last post was a little too much for a fellow cancer fighter. I certainly understand how it could upset someone getting ready to enter treatment. As I said, sometimes I just need to vent. Things aren't always going well.

Last week was my "off week" from Xeloda. This time, the redness, discoloration, and pain in my hands & feet actually lessened somewhat. This was a welcome respite! I feel like perhaps I can stay on this current dosage schedule. Dr. Green had said that if it got to be too much, she would lower my dose a little. I am not going to ask for that, since I feel like I can tolerate this level of side effects. One week on, one week off, and if the off week it gets better, then I'm ok.

On the down side, my headaches (that we think are caused by the Avastin) have become more frequent. I've had 3 in the past week and a half -- this is really cramping my style! It's not like me to stay in bed or on the sofa all day, but that's what I have to do. The experiment of trying Inderal (a blood pressure medicine) was only partially-effective. Dr. Green had prescribed it with directions to take one pill on the day before my Avastin infusion, then one each day afterward for a total of 5 doses. I still got a headache, but it wasn't severe enough to put me in bed. The most recent headache, a few days ago, started to rev up in the evening -- an evening when that day I had not done much but sit on the sofa and watch football with the family (a rare day indeed!) I tried taking 2 extra-strengh Tylenols to try and stave off the headache. I went to bed with the headache. I woke up with the headache, which was even more severe than the previous night, and so I knew it wasn't going to be good. My old, old stash of prescription pain meds was finally dwindling to just a few pills. I took a single Percocet which in the past has worked well. No such luck. Four to five hours later, I took another Percocet. Still nothing. I hesitated on taking it in the first place, because I've been instructed by my doctor to avoid aspirin and NSAIDs. Percocet contains aspirin, but I figured one or two wouldn't kill me. I was desperate, after all. The only drug left in my stash (leftovers from various surgeries from 4+ years ago -- biopsies, mastectomy, reconstruction, c-sections) besides the few Percocets was Vicodin from xx years ago. It was so old, I'm not even going to say how old it was! I feel the need to say here that none of the prescriptions in my stash had been refilled -- they were all the originals prescribed by my surgeons immediately post-op. I am certainly no pill-popper! Anyway, I did resort to taking the old Vicodin, which also did not work. I know, I know, I should definitely not have taken any prescriptions drugs that old. As I said, I was desperate and didn't want to visit the hospital. I thought well maybe I should try a Phenergan suppository after a couple of hours of the Vicodin not working, and although it knocked me out -- well actually all of these things knocked me out for a time and I was sofa- or bed-bound the entire day -- it never took the headache completely away, but did diminish it. Amazingly, after a day of mostly sleeping, I was still able to sleep through the night. The next morning I felt a little better, and by the end of the following day, the headache finally completely abated. It is definitely time to discuss the headache issue again with Dr. Green.

Additionally, the FDA just recently made a decision regarding the use of Avastin for breast cancer patients: the FDA removed Avastin from the list of approved drugs to treat breast cancer. They actually had originally fast-tracked it for approval a couple of years ago, but now they've changed their mind and are fast-tracking its disapproval. Or something like that. The reason was that studies have shown the side effects of the drug outweigh its benefits, and that the cost was too high in relation to the drug's effects. I read the decision, and re-read the studies, and I have to say, it scares me. Avastin scares me. When I called Dr. Green to ask what direction my treatment will take now that the FDA has un-approved Avastin, I was told that patients who are on it and responding well to it may continue to take it. Ugh. OK. If you say so.

Although I am a relatively healthy woman (ha ha), says my oncologist, I still worry about what may happen inside, where I can't see/monitor. I know that the Avastin is responsible for my mild nosebleeding, gum bleeding and rectal bleeding ... sooooo what's going on inside? I've read that long plane trips can cause dvt's (blood clots in legs) so if my vascular system is being compromised, what, if anything, will happen when I fly to Hawaii in March? Will the family vacation (of a lifetime!) be ruined by something to do with my health? I sure hope not! I know, I worry too much.

So tomorrow, I am scheduled to have my next Avastin infusion, then I will see Dr. Green. When she prescribed me a fresh bottle of pain med (a LIFETIME supply, I might add!) she also asked that I make an appointment so we can discuss the headache/Avastin issue, which I am more than willing to discuss. Looking forward to dropping the kids off at school, driving through Burger King for my usual Cini-Mini's and a large decaf, with extra creams! Don't worry, my health monitor friends, I only have this breakfast when we go to MD Anderson, which is every 3 weeks as of now! I usually have 2-3 donuts ... just kidding! But seriously, having this breakfast seems to help the nurses get my IV started on the first try. No kidding, when I skipped BK, it took 5 attempts. So, BK it is, every MDA infusion day! Also looking forward to a peaceful day with just me and Danny. Strange that I consider a day with at least 2 needlesticks and an infusion of poison into my veins as a peaceful day.

Attaching some photos of my hands and feet, at their very worst so far, to try out the photo option here on the blog. I should probably replace that old pic of me, too, but that will have to wait until another day. Danny thinks I need to add one of me @ Christmas time, so people can see that aside from my hands and feet, I really do look like a normal human, so OK. Anyway the hands and feet pics are not today, but some time last week when I thought, I gotta get a shot of this. I think they're some pretty weird side effects. Makes you wanna say "Ewwwww!"

Thanks for reading ... until next time.

Thursday, January 6, 2011

Cancer talk

Hello all, and Happy New Year! Thanks for reading my rambling blog posts. I am doing fairly well, and I continue on the same two chemotherapy agents. Right now I have something on my mind that's been bugging me. About myself, and also others.

In the past, I've been guilty of hearing someone's cancer complaints, and afterward thinking, and even discussing with others, how that person just doesn't know how good she has it. She's not even getting the "big time" chemo, and she's complaining of this, that and the other side effects. When I was on chemo (10 yrs ago) I lost my hair, did a lot of throwing up, and had to be in bed for a few days ... and here's this person not having any of that and they're complaining.

I admit now that I was very wrong to judge that person in that way (the issue I am referring to took place a couple of years ago.) One really has no idea how badly someone else can be feeling, based on how they look and act, or how you think they should be feeling knowing the treatments they're receiving. Just because someone is going through a different kind of treatment than I did, doesn't give me the right to judge or make comparisons to the side effects I experienced. It's all relative!

I have learned this lesson, because right now I'm on the other side. I'm not receiving the kind of chemo that makes me lose my hair or constantly be nauseated and fatigued, but I AM on chemo, and the two drugs I take DO have their side effects, and there are a lot of them. Many of them have caused me to have to change my lifestyle and daily living activities. This latest round of cancer treatments is taking away, one by one, little parts of my life. Each by itself may not sound so bad. But in combination, it definitely is affecting me.

Such as .... My independence has been affected, as I have trouble using my hands for cooking, cleaning, brushing my teeth, zipping my pants, putting on shoes, tying shoes, etc. If I was still a nurse, I definitely could no longer work. As it is, I can still do some of my work at the Shop (the desk work,) but I certainly can no longer fill orders. It's too painful on my hands. I can no longer run for fitness, earlier because of the bone mets and femur fracture I sustained a while back, but more recently it's because of my feet. They are red and painful and tender, and being on them for long periods of time exacerbates the symptoms. I have intermittent, mild bleeding from my nose, gums and rectum. I am struggling to find a balance between extreme constipation and diarrhea, and am dealing with the discomfort that accompanies each of these maladies. I've had to severely modify my diet due to burning of the lips, mouth, and esophagus. My taste is altered so that I can't taste salt. Everything tastes like it needs salt! Two to four times a month, I get a severe headache with debilitating nausea as a side effect of one of the very strong chemo drugs I'm taking, making me lose a whole day of life each time. My healthy sex life ended over a year ago because of the pain it caused, all due to the anti-hormone drugs I was on for so long. And even though I am now off of anti-hormones (which we hoped would send some life into my insides and make sex less painful,) it is still excruciatingly unbearable, which is just plain sad for a woman of my age with a hot and healthy husband who loves me and wants to be with me... but I guess things could always be worse.

A lot of people ask how I'm doing, and sometimes they really do care and really do want to know, but mostly I just say "Great!" Because overall, I AM doing great. My scans have shown great improvement and this latest treatment regimen is definitely working on the cancer. This is wonderful news, and I am truly thankful for it. I have people say "Well you LOOK great!" And I do, excluding my hands, feet, and purplish-colored lips, that is. I really am thankful that I look great, and that I don't LOOK like a cancer patient... things could always be worse.

There are other people who try to tell me what I should be eating and not eating, what I should be drinking, the supplements I should be taking ... this is supposed to be good for the immune system, that will help keep your energy levels up. "Make sure you eat some salad," I've been told on my way out to eat with my husband. Yea, and perhaps they should be giving me some green tea in my IV infusion instead of the chemo drugs! I think I can have a doggone hamburger if I want one! I've been told that I should be exercising ... one person even saying "Even if it's just 30 minutes, three times a week." EXCUSE ME?! That sounds like the workout schedule of a perfectly healthy woman who is NOT on chemotherapy for stage IV breast cancer! I agree that some exercise is definitely a good thing, for everyone, but I simply haven't had the energy. Plus YOU try to find some good handless, footless ways to exercise! What I interpret these comments as, is that I'm not doing enough to fight my cancer. Or perhaps my diet and exercise habits have somehow caused my cancer. If only I would do all these things, my cancer would go away! Never mind the fact that, as instructed by my oncologist, who works at the best cancer treatment center in the world, I have to poison myself with an oral chemotherapy agent morning and evening, 7 days on, 7 days off for, not just a specified time period -- indefinitely! Every three weeks I go get an infusion of a different poison. Also indefinitely, I might add! Unfortunately with stage IV cancer, there is no light at the end of my tunnel. There is no magical date on the calendar when I will receive my last chemo treatment. When my doctor decides to change my treatment, it will be because the current ones have stopped working and it's time to move on to the next options.

Then I've had the occasional person try to give me "perspective" as a method of dealing with my cancer and side effects. They tell me about so-and-so who has this other (worse) kind of cancer, a husband of a friend of theirs is getting radiation to the brain, and such-and-such relative is having hallucinations from their non-cancer-related disease treatment. I understand that perspective has its place in how one deals with any kind of personal trial. One can almost always find another who is less well off than oneself ... more sick, with a more deadly cancer, that has spread everywhere. It is helpful to look for the positives in your own situation and to know that things could always be worse. I myself use this to cope with my own illness. But the timing and delivery of giving this kind of advice to someone in this kind of situation is something that should be considered. Sometimes, we cancer patients just want to be listened to. If you honestly want to know how your cancer-patient friend is doing, ask and then LISTEN to their response. It's not always appropriate to interject advice about perspective. As I said before, it's all relative, and each individual handles things differently. It always IS appropriate to say "Oh, I'm so sorry you're having to go through all of that" or "Wow, that must be tough." Sometimes while you're trying to give advice, the recipient of your good intentions may be interpreting it as you minimizing what they're going through. That it's not that bad. Not as bad as .... whomever you know or whatever you've gone through. Now that I'm on the receiving end of this kind of advice, I truly have "perspective" on what kind of things to say and not to say.

Let me end by saying that I know that most folks mean well and are not intending to offend. I do try to keep that in mind. But sometimes it gets to me. I am only human and I'm not always able to let things roll off my back. Sometimes I just need to vent, which is definitely what I've accomplished here.