Sunday, August 30, 2009

Strange day

Last night didn't turn out to be too restful, unfortunately. Due to my stomach issues, I didn't dare take another pain pill until my six hours were up. So I ended up being quite uncomfortable during the night. But I managed to get at least some sleep, even if it was spotty, and full of strange dreams.

I sure was glad when the morning came, and after a good breakfast (DH makes yummy buckwheat pancakes!), I took another vicodin. Turns out life is much better when my pains are relieved. Still, while the medications control most of the pain, it seems this time around they also cause nausea for me. When I had taken vicodin previously, I never had an issue with it. Furthermore, I make sure to always take pills with food so I don't upset my stomach. Yet this time around, it seems that within two hours or so of taking a vicodin, I get stomach/nausea issues. At least that's my current working theory.

This time at least I didn't throw up, but only barely. I even had to take another reglan to calm down the stomach. Also, I started taking the stronger version of vicodin that Dr. V had prescribed (rather than the somewhat weaker version I had left from an old prescription), and that really made me feel loopy -- and extra nauseous. So maybe I need to lay off the pain meds to calm the stomach. But of course, that is difficult to do when you are in pain. At least the tingling in my hands and feet isn't as bad this time around as it was during the previous round. So that is something I am grateful for.

Sorry, I am rambling... But I've been having a strange, loopy, sleepy then wide awake then sleepy and so on, nauseous kind of day.

Oh, another thing I am grateful for are my wonderful friends. Starman and 2l dropped off a goodie bag for me today (depositing it so sneakily on the front porch that not even the doggie heard them!). The treats are delicious, and the clothes choices amazing! The black and red dress fits me almost perfectly, and will make a nice alternative option for my brother's wedding, if I manage to go. Thanks so much, you guys are amazing!!!

Saturday, August 29, 2009

This is different...

I have now taken a total of seven rounds of chemo: four combination cocktails of adriamycin and cytoxan, and three taxols. The former ones were supposedly very nausea-inducing, while the latter are considered more stomach-friendly. And indeed, I needed powerful anti-nausea drugs for the first four rounds to reduce the nausea to a slight queasiness. During my three rounds of taxol so far, I did not take anti-nausea drugs, nor did I feel the need to. It just didn't seem to bother my stomach at all.

Oddly, tonight all of that changed -- and not in a good way. What follows may be TMI for some, so feel free to skip the rest of this post...

This afternoon, seemingly out of nowhere, I felt the need to throw up. So for the first time during chemo, I actually found myself hunched over that porcelain bowl, letting some of the food I ate go through my head again. The really strange thing was that I didn't really feel nauseous before, just a little heartburn.

Afterwards I felt fine. I even had dinner a little later. Just to be safe I took a pepcid to reduce the stomach acid. But tonight, a few hours after dinner, the same thing happened all over again -- except this time I cleared out my stomach contents more thoroughly than the first time. Out came not only dinner, but also the pepcid and the pain pill (but no refills for me tonight -- who knows how much I've absorbed already). But again, I don't really feel nauseous, nor did I sense this coming on for more than a few seconds. I have noticed, though, that I have been getting lots of chemopausal hotflashes today, way more than I normally experience. How bizarre is this? This is really different from my experiences in previous rounds of chemo -- and not in a good sort of way...

We had hoped to make it to our niece L's wedding today. This would have required a nine hour car trip, which would have been really hard on me given that I just took another round of taxol on Thursday. I am sad I didn't get to witness her wedding, share the joy, and spend time with the family. However, if I imagine going through my current strange episode hundreds of miles away from home, and far away from my doctors, I would be very, very worried right now. Worried that the trip somehow might have made me feel worse. Worried about where to go for medical help should my condition decline. Worried about way too many things.

At least I am at home as I experience these strange new developments. I took a reglan to help keep that stomach of mine at bay. I am within easy reach of my doctors, and the ER and hospital with which I am familiar and where they keep my medical records. And right now I am very grateful for that -- even as I hope that I will not require the services of any medical professional anytime soon. 

Will I at least be able to sleep and get some more rest? I'll let you know in the morning...

Here comes the pain again...

It's that time of the chemo cycle again when the pain starts. I woke up this morning and could feel it. Luckily DH was sweet enough to get me some crackers, pain pills, and water (I can't take the pills on an empty stomach) and then let me sleep some more while he took the dog out and made breakfast. When he came to get me a few hours later, I had gotten a bit more sleep and the pain meds had kicked in. So I managed to make it downstairs without too much difficulty. 

I'm curious to see how the pains will develop this cycle, since I took the neulasta shot last night -- my first one in conjunction with a taxol treatment. I can feel the pain today, but it is not (yet?) as bad as it was in the previous two taxol cycles. So I am wondering whether this morning's aches are simply from the neulasta. Who knows... We'll see what develops.

Friday, August 28, 2009

Early warning signs

When I woke up this morning, I could feel the tingling in my fingers already. I suppose that is an early warning sign. My feet still feel fine, but I have a feeling that the pain and neuropathy will hit me big time in the morning. In none of my previous rounds of taxol have I felt the numbness this early...

In the meantime, I am trying to make use of the energy that I still have before the pain drains it out of me. There is so much to do, and so little time before the side effects will likely kick in. But I will do as much as I can -- and I will have to find the time to finish my projects sometime later. My body has so many limitations these days that I am still learning to respect.

It turns out that my brain isn't what it used to be, either. As I was working today, I messed up so many times it wasn't even funny any more. Here I had spent an hour concentrating on a project, just to finish it -- and to find out that despite all the thinking I did, I finished it incorrectly. So I had to undo everything and start all over again. Apparently my abstract thinking skills have suffered somewhat during chemo. Go figure.

At least I still have an appetite. Since I wanted to make headway on my various projects, DH was in charge of cooking. I provided the idea, and he did the actual cooking. I am lucky that DH is a very good cook, as dinner was delicious. So at least I didn't have to worry about food. 

It's late now and I have done about all the work I could for today. So I'm off now to give myself the neulasta and lovenox shots, and then I'm off to bed. Hopefully I'll get a good night's sleep, even if takes the help of ativan and benadryl.

Thursday, August 27, 2009

Chemo #7 done!!!

I am very happy to report that I made it though chemo #7, a taxol round, without any major allergic incident. Although I had approximately four instances where I started flushing and sweating, they were pretty mild and subsided on their own without necessitating anti-allergy drugs and an interruption to the infusion. Maybe they were just chemopausal hotflashes or something...

In any case, I am very glad the whole thing went over without major incident. The greatest complication was the Dr. V had not put in a written order for IV versions of all the premedications. I had to mention it to the nurse, who then had to get the doctor's written approval to proceed with IV medications. This confusion and the subsequent extra infusions lengthened the process a bit, of course. It was seven p.m. by the time we finally got to go home.

So now it's only ONE MORE taxol round I have to survive. Oh, and of course I yet have to survive the side effects of this round. Tomorrow I will give myself a neulasta shot again, to boost my white counts in anticipation of potential travel this cycle. Last time I took it, I tolerated it pretty well, but hopefully the neulasta will not have a weird synergetic pain effect with the taxol. Oh well, I guess I'll find out for myself soon. I even managed to have the neulasta and my lovenox refill delivered today, just in time for tomorrow's injection. It all seems to be working out.

I'm sleepy tonight from the IV benadryl. I think I'll call it a day soon, folks.

Wednesday, August 26, 2009

Getting ready for another one

It was another nice and sunny day. I spent it lunching with a friend, and getting some work stuff done. But although it was a nice and relatively productive day for me overall, it was never far from my consciousness that I am not going to feel this good much longer. After all, chemo #7 frighteningly close. 

I am really hoping to make it through tomorrow's taxol infusion without having an allergic reaction. If I do manage this, it would be be a first for me... So far, they have always had to stop the infusion and combat the allergic reaction when they have given me taxol. The first time they did this, an allergic reaction was more or less expected, apparently. The second time, however, it wasn't really normal, though. But then I've been trying to tell them that I am anything but 'normal' (whatever that may be...). 

Be that as it may, this time around we will try whether IV benadryl and steroids before the chemo, rather than the pill forms of this medication, will make a difference for the better. I am really hoping they will, as I am tired of those allergic reactions. 

Tonight, in anticipation of chemo, I am once again hopped up on steroids and awaiting the inevitable tomorrow. It feels good to know that by this time tomorrow, I will be more than three quarters done with chemo. Nonetheless, it is difficult to know that the chemo will hit me quite badly and that I will be in considerable pain for quite a few days after the infusion. This good poison packs quite a punch for me, unfortunately. And I know that my already battered body will have to take two more of those. Ah, can't wait to be done with this poison game... 

So wish me luck for tomorrow. Hopefully I'll get in some good sleep (courtesy of ativan and benadryl) before the cycle begins anew.

Tuesday, August 25, 2009

It's all in the blood

No wonder I've been feeling better lately. When I went to see the poison man yesterday, they did a CBC as they always do. I don't have a copy of yesterday's blood count yet, but Dr. V said that my white count is a bit lower than they like to see. This is not so good, but then the count wasn't terribly low. I just have to watch out and avoid getting an infection.

The good news is that my red blood cell count was up markedly. In recent weeks it had hovered around ten point something-or-other, but yesterday it had gotten back up to eleven, just half a point under the 'normal' value. This is very good news indeed, and it explains why I have had a lot more energy lately. At the end of the day, it seems, it's all in the blood.

Monday, August 24, 2009

Went to see the Poison Man

So today was my monthly appointment with the poison man. I was very glad to hear that he is ok with continuing my taxol, at least for now. In order to combat the allergy problems I have been experiencing during the previous rounds of taxol infusion, we will try IV steroids and benadryl, rather than the tablets they gave me before. Hopefully that will alleviate some of the issues I have been having with the infusion. 

As for the peripheral neuropathy, the tingling has actually gotten better over the last few days. That is a good sign, Dr. V says, as it indicates that it is merely a temporary side effect. Apparently it does put me at a higher risk of developing permanent side effects, but for right now that doesn't seem to be the case. I guess if and when it does happen they won't give any more taxol (which to me seem kind of like saying "oops" we missed -- sorry). But until then, I can continue to take the good poison as planned.

We also discussed some traveling plans with Dr. V, and he said he had no objections in principle. In preparation for travel he wants me to take a neulasta shot again this cycle, and he wants me to take along a "just in case" prescription of an antibiotic. Other than that, any travel will depend on how I feel. Judging from experience this does not bode so well for the first week after chemo, but may be a possibility during the second week. We'll just have to see how it all works out.

Other than that, I continue to feel stronger each day. I didn't get in quite as much walking today as I did yesterday, but instead I cooked up a bunch of crepes from that batter I made yesterday. I had forgotten just how easy to make yet delicious crepes are! We filled ours with Nutella and banana, which worked out quite well. They were yummy enough that I had to make two each for both DH and me -- and then DH mumbled something about "I bet those taste much better fresh..." -- so I went off and made him a third one for dessert (well, we did have a only a modest dinner of leftovers...), where I played with Nutella and blackberries. I guess chocolate spread goes well with many different kinds of fruits...

Sunday, August 23, 2009

Now we're talking...

Turns out, life is much better when I'm not stuck in the hospital. During my last taxol cycle, I spent almost all of my 'good' days stuck in the isolation room at the hospital, possibly fighting a virus. So when I took my sixth chemo treatment, I did not really feel ready for it, but still fragile and not quite recovered from the last round. This time, I think, it will be quite a different story. With each day, I can feel that I am growing stronger and recovering more. 

I cannot help but wonder how much of a difference that will make for how I will tolerate the next round (provided my oncologist agrees to keep me on taxol, that is). Maybe if I am stronger when I get the next round of the good poison, it will not knock me out as badly as it has been doing. This is why I have been eager to regain as much of my strength as possible.

Today was another step forward in my recovery. Not only did I walk the dog in the morning and in the evening, but I was well enough to go out with DH. In the afternoon we went to see a movie we've been wanting to see badly, as it is about a lot of good food, Julie & Julia. We really liked the movie, so we celebrated by going out for an early dinner (or a late lunch, whichever way you want to look at it). Then we thought we needed a good after-dinner constitutional, so we popped on over to the mall for some serious mall-walking. 

There actually is a walking club that meets on weekdays at the mall, rain or shine. Local government is supporting this, apparently, and has paid for an official walking club course to be marked within the mall. Since the mall is quite big, one round on the course comes out to exactly one mile. I am proud to say that we walked at a respectably fast pace, and finished one round. Given that I had already taken a morning walk, and that I ended up doing an evening walk right after we came home, walking a mile at the mall is quite respectable for a girl in the middle of a grueling course of chemo. It felt like a nice achievement to walk the distance. I was tired afterwards, but quite contented.

When we got home, I got so inspired by the movie that I decided to make some crepes. However, while my energy was sufficient to whip up the batter before we took the doggie out for an evening walk, I sort of crashed when we returned from said walk. Thus the crepe batter is still resting in the fridge. Alton Brown, whose recipe I made, assures me, though, that the batter will last in the fridge for 48 hours. So I am thinking that freshly made crepes with Nutella and fresh blackberries will delight us at some point tomorrow.

Talking about tomorrow, I have my monthly appointment with my poison man. In addition, they will draw my blood for the usual pre-chemo liver panel. I expect that we will have an extended discussion about the remainder of my chemo, as I am really starting to feel the peripheral neuropathy in the outer three fingers of my hands, as well as in my feet. The impact of the taxol on the nerves is cumulative, so each further course of the good poison is likely to do more damage. On the other hand, I am eager to take the full course, as it is what is known to give the best protection (to the extent that modern medicine can achieve it) against a recurrence of the TNBC. The taxol, in particular, is thought to be crucial in preventing recurrence, which makes me particularly eager to finish the dose dense chemo as planned. But oh well, we shall see...

Saturday, August 22, 2009

Two walk kind of day

Ah, how nice it is to feel stronger again. Today I actually managed to take two walks, like I used to. One was an extended little walk with the doggie in the morning. And the second one was an extended excursion DH, the doggie, and I took this evening, after it cooled off somewhat. The exercise feels so good! I even managed to intersperse some little sprints into my evening walk, just to get the heart going a bit more. How exhilarating!

My last two rounds of chemo have left me feeling so weak and vulnerable that it really scared me. Particularly after that week in the hospital, I did not feel ready nor strong enough to face another round of the good poison, but had to go take it anyway. This time, I was lucky enough (so far) to stay out of the hospital. So I really want to make sure I regain some strength and energy before I have to face the good poison again on Thursday. 

Another correlate of the weakness has been the feeling that my brain has turned to mush. This is bad any old time, but particularly when you have work that needs to be done. Well, I have plenty of such work that has piled up over the past few months, and I really need to get to it. So I am hoping that strengthening my body will also help me get some of that mush and fog out of my brain. We'll see how well that works, but I think it's worth the try.

Thus I hope to really take advantage of my remaining 'good' days of this cycle to get back into shape, and maybe even get a bit of work done. Who knows, maybe that will make it easier to take the last two rounds of chemo, as well.

Friday, August 21, 2009

No fever!

It's still way too hot outside, but luckily no fever inside. Maybe a bit of cabin fever, if anything.

Overall I'm feeling a tiny bit stronger today. This is a good thing, as we lost power after a thunderstorm came through and I had to brave the heat without air conditioning or even fans. It was a strong cell -- it got so dark it looked as thought the world would end. Of course it didn't, although the dog seemed to really fear this might be it.

The funny thing is, he didn't use to be afraid of thunderstorms. But then I didn't use to worry about cancer as much. I guess stuff happens -- and we change. What do they call that, the "new normal"?

Thursday, August 20, 2009

Feeling a bit better

I feel that I am over the hump for this round, and that I am starting to feel a bit better. I didn't need any pain meds today, for instance. Luckily, the daily chills and slowly rising temperature also stayed away. My hands and feet still tingle, though. Overall, however, I am feeling much better. So I took the doggie out for his morning walk all by myself, and we walked a nice big round.

Tonight, DH came home early and we went out shopping and then to dinner. That was exhausting, but very nice. After all, I hadn't really been outside of the house (with the exception of two walks the day before) since my last round of chemo. All I can say is that the Taxol is definitely taking a greater toll on me than the Adriamycin and Cytoxan did!

I don't know whether it's due to the chemo or not, but my allergic reaction to those insect stings is still going strong. It's a big, two inch, raised, red, and itchy welt. So I continue to need Benadryl for that, which makes me sleepy. Oh well, as I've said before, in this heat this may not be the worst thing. I try to look at it as an extended, bug-induced siesta...

It really feels nice to regain some strength, though, even if I still tire very easily. As soon as we came back from our shopping/dinner trip, I felt ready to turn in for the night. These are the kinds of impulses I give in to pretty easily these days. One more Benadryl and I'll sleep like a baby...

Wednesday, August 19, 2009

Still close to the line

I don't know what it is, but every afternoon I seem to get the chills, and then my temperature climbs up to just under 100 degrees. Luckily it has stayed there so far, and then dropped again later in the evening. But still, I keep getting close to the magic line -- and that has me very, very uneasy. That last hospital stay is still too fresh in my memory... 

The numbness and tingling in my hands and feet is intensifying. Looks like I'll have to have a serious talk with my poison man on Monday to discuss whether I can continue with the chemo as planned. Permanent nerve damage may not be something I want to risk. I've been taking vitamin B6, but it hasn't gotten any better. Maybe I need to take the vitamins for longer before they can make a difference.

Despite the numbness, I have had less pain and have scaled back the pain meds to the point where all I took today was a half a vicodin in the morning. To get moving again, I even went for a walk with DH and the doggie this morning, and then again tonight after it cooled down sufficiently to venture outside. Each walk wasn't terribly long, but it wasn't a mere "once around the block" either. It feels good to be moving again!!!

Oddly, my insect stings made a 'comeback' this morning, when they reappeared as two inch diameter, red, raised, and itch plaques. Last night I couldn't even tell where they had been, but I suppose the benadryl wore off and the allergic reaction made a comeback. I'll have to take the benadryl for a few days, I suppose, before this is over. Oh well, sleeping a lot during this heat wave may not be the worst thing...

Tuesday, August 18, 2009

Mercury rising...

It looks as though I managed to survive the insect sting incident from this morning without major damage. Thanks to the benadryl and the quick icing, I can barely even tell any more where that bug got me. So far so good. 

What is concerning me more, however, is that I started to get chills this afternoon, and that my temperature started rising. This is definitely not a good sign, and I'll have to keep a careful eye on it. DH is on his way home to check on me, so thankfully I won't have to deal with this alone...

It stings!

Clearly, I am not on a lucky streak or anything. Well, I am lucky in that I have so far managed to avoid another fever. But this morning I was enjoying the slightly cooler air, and decided to don my gloves and face mask to head into the garden (yes, I know it's a strange costume, but the doctor requires me to wear it when I'm out there...). I was picking some long overdue tomatoes, when all of a sudden I heard the sound of insect wings getting stuck somewhere they shouldn't be stuck. Unlucky me, they were stuck beneath my dress. 

I ended up with a total of three stings to my abdomen and thigh. I had never gotten stung by anything worse than a mosquito before, but as I'm in the middle of chemo I get stung by some critter that has enough life in it to sting me three times. Count that: three times!!! So it clearly wasn't a bee, which would have lost its stinger and died, but some sort of little wasp or something that got lost in my dress. 

After the vile attack, I ran out of the garden calling for DH's help, taking off my dress as I went. Sorry, but when I get attacked, I lose all sense of proper decorum and just want to get the attacker off me. DH got me inside, checked to make sure there was no stinger or anything that needed to be removed. Then he brought me the benadryl I asked for -- just in case. Now I'm sitting here icing the stings, and hoping I won't get a larger allergic reaction. With my history of allergies, you just never know.

At least I got a pretty good night's sleep. This morning, however, I woke up with worse tingling in my hands and feet. I fear there is some nerve damage coming my way, making it less likely I'll be able to complete the dose dense Taxol schedule. 

My more immediate concern right now, though, is to avoid another emergency trip to the doctor or ER. Let's hope the benadryl does its job and the bug will not be able to add insult to injury.

Monday, August 17, 2009

Made it through another day

I'm not sure how exactly, but I made it through another day. Maybe the secret lies in moving as little as possible while strategically placing myself close to the pain medicine and the air conditioner, while the ceiling fan provides some additional relief. Yes, you guessed it, it's been another crazily hot day here. But I made it...despite the fact that the vicodin gives me less pain relief this time, and despite the fact that my fingers and the soles of my feet are tingling (notwithstanding my vitamin B6 supplement). 

I finished reading another book, and watched a bunch of TV programs I didn't really care about. Unfortunately, that is all my mind is capable of these days. I've been feeling very frail not just physically, but also mentally these past few days. Must be the cumulative effect of the chemo, plus the number the Taxol is pulling on me. Didn't everyone claim this part of the chemo would be much easier on me than the AC???

I'm getting really tired of being sick. What I want the most is to have my old body back, to have my old energy back, to have my life back. Or how about just feeling good enough to make a trip to the grocery store? Hey, why not dream big and wish for being well enough to make it to DH's niece's wedding in two weeks? Or even bigger by dreaming I could actually make it to my brother's wedding party on Labor Day weekend??? Sadly, all of the above are really just unachievable dreams for me right now.

Maybe I need to dream smaller. How about dreaming of feeling good enough to take out the dog for his morning walk. Could that be in my future again sometime soon? I really hope so, as I think I will go stir crazy if this continues much longer...

On the bright side, once it cooled down a bit tonight I managed to do dishes again, even though I had already helped make dinner. Wohooo, I managed to do something today! I suppose that in the absence of real achievements, I will have to settle for celebrating the little ones. I just hope that my patience and good spirits don't run out before my treatment is over... But hey, things have to get better eventually, right?!

Sunday, August 16, 2009

Storm clouds are gathering...

When I woke up this morning, I knew the storm clouds were gathering. There it was again, that nasty joint and muscle pain I had experienced after my first round of Taxol -- just a day later than anticipated. At least this time I was forearmed with vicodin and could thus keep the pain at a tolerable level. 

What worries me much more is that my temperature has once again begun to creep up. Maybe it is just the insane heat outside, but maybe it's the heat generated within my body. The next days will tell. But I so do not want to go through all that blood drawing and the hospital stay again... And I still worry that Dr. V may take me off the Taxol and put me on some less effective drug. 

I've been pushing liquids so at least I won't get dehydrated. The temperatures outside are outright crazy, and barely tolerable inside where a lonely window air conditioning unit is noisily working overtime. Ah, I remember now, this is why I was hoping to have a split air conditioning unit installed earlier this season -- except I never had the energy to research models and find a contractor to install it.

That's too bad, as I am paying the price for it now. Apparently the chemical rigors of chemo also bring with it a reduced tolerance for heat. Combine that with chemopause and its accompanying hot flashes, and it's one uncomfortable, sweaty combination. 

Saturday, August 15, 2009

Sunny skies so far

They skies are sunny and it is hot out -- but thankfully I'm relatively cool inside. I am particularly thankful today that the dreaded fever did not make a comeback today. To make matters even better, the awful joint and muscle pain I experienced last week has not made a comparable comeback, either. Instead, I merely have some mild muscle pain that I can control with extra strength acetaminophen. Yay, a tolerable day after Taxol!!!

Thus I am counting my blessings today, and hoping that thing will continue to go smoothly this round. And after that, it's only TWO MORE rounds of Taxol. That's got to be feasible, no? Just two more rounds of the good poison. I've made it through six grueling rounds of chemo so far, so what's a mere two more rounds???

Friday, August 14, 2009

The calm

But is it a true calm, or just the proverbial calm before the storm? I guess I will find out tomorrow, when I expect the joint and muscle pain to start again. In any case, this time I am armed with pain medications that I know will alleviate my aches. What I am more worried about is the question of whether or not that nasty fever will be back. If it does return, I may be in trouble and end up -- once again -- in the hospital, and may have to switch medications for the last two rounds of chemo (which I'd really like to avoid if possible...). Thus I am facing tomorrow with a bit of trepidation. 

But today was a nice, calm day. I didn't get much done, but then I didn't plan to get much done. Today was all about resting and being nice to myself, after that week in the hospital and then the next round of chemo so shortly thereafter. Actually, I don't really even remember what did all day long, other than talk to friends and write a few emails. Oh, I did watch a few cooking shows on TV and snuck out briefly to water a few droopy plants in the garden. But other than that, I merely rested. Oh, that felt so good.

Last night I even got a wonderful, uninterrupted night of sleep. I did take an Ativan, just in case, since I was pumped full of steroids. But I guess I was also so pumped full of benadryl that I just slept, slept, slept. When DH woke me this morning I was still hard asleep. Actually, I was sleepy enough that he went and took the dog out while I slept some more. Upon his return I had already fallen fast asleep again... Wow, I don't think I've ever gotten this much sleep with decadron in my system. Maybe benadryl is the magic pill for that? 

Thus today was a really good day for me. Plenty of sleep, no pain, once again no nausea whatsoever. Ah, if it could only stay this way. But of course I know that everything may well change when I wake up tomorrow. The weird chemo roller coaster will start up all over again... I cannot wait to be done with my biweekly poisonings. So I take my hat off to you ladies out there who have been on chemo for months on end, or even years. I admire your strength and your courage to face the rigors of chemo over, and over again. 

Thursday, August 13, 2009

Chemo # 6 and Allergies

Today I got chemo # 6, my second round of Taxol. As always, I had to add a little drama to the whole thing, though. Despite the fact that -- as instructed by the nurse -- I had pre-medicated with 5 decadrons the night before chemo, and five more the morning of the chemo, I once again had an allergic reaction the medication. This time it happened not 16 minutes in as the first time, but 29 minutes in. So one way of looking at it is that my body took a full 13 minutes longer than the first time around to react, which must been I'm becoming more tolerant of the medication. Of course the other way of looking at it is that I am truly allergic, either to the medication itself or one of its supposedly inactive ingredients, such as the cremophor solvent. 

Apparently, many people have an allergic reaction as I had it the first time, but then they can tolerate the Taxol for their remaining courses. If a patient, such as myself, develops the same reaction a second time, however, the doctors become a good bit more worried about whether or not the patient can continue to take this medication. So today they called in Dr. V to evaluate me, and  there was even talk of switching my medication. 

Now, if my body will not tolerate the Taxol, then obviously I cannot take it. However, any switch would also mean switching away from my dose dense schedule. Yet dose dense AC followed by dose dense T is what is currently considered the most effective, the gold standard treatment of breast cancer with a high recurrence rate, such as TNBC. So it is truly important to me, and probably for me, that I finish the form of treatment that is most effective. 

Thus, when I once again broke out in sweat, felt warm, and saw the rash rising up from my chest, heading towards my face, I got a bit worried. The nurse had ended her 15 minutes of close observation, and DH had stepped out to get something to drink, effectively leaving me all by myself. But I managed to keep my wits about me and push the call button and summoned the nurse, who acted immediately. Within less than two minutes, there was a crash cart at hand, my nurse had stopped the infusion and administered liquid benadryl and cortisone, and three or more other nurses had rushed in, bringing  supplemental oxygen. I felt a tiny bit short of breath, so I took some oxygen for a while, and felt as the benadryl kicked in, fighting back the allergic reaction. Once everything subsided, and Dr. V had been called and given the go ahead to start up the infusion again, I made the second try at finishing the treatment. 

This time, I got a few more warm, sweaty moments, but I didn't turn red again. So I figure it wasn't an allergic reaction, but perhaps a hot flash or something, particularly since I've been experiencing drenching night sweats recently. I suppose I am currently in chemopause, with the accompanying side effects. It may just be that I do not normally pay such close attention to my body, and thus do not notice the transient sweaty brow. In any case, I lucked out and each little hot flash passed quickly, without accompanying flushing. With the Taxol now entering my body at a slower rate (and consequently extending my already long 3 hour infusion time), we spent all afternoon, i.e. from 1 p.m. to 6:30 p.m. at the Cancer Center -- and they didn't even have to wait for the CBC results as I had those done at the hospital). Maybe I need to make earlier appointments for the last two rounds...

Tonight I'm tired due to the afternoon's excitement, and the high doses of benadryl it necessitated. Given my decadron issues, though, I also took a preemptive Ativan to make sure I get a good night's sleep. For any pain I might develop, I now have a script for Vicodin. Prophylactically, I will also start taking 50 mg of vitamin B6 to prevent/treat any nerve damage the Taxol may cause. Actually I already felt some tingling in this round tonight -- in my feet, where I did not have any problems last time. I am not allowed to have vitamins the day before, the day of, and the day after chemo, so I'll have to wait until Saturday to start the vitamins. If my nutritionist friend is right, as she typically is about these things, it should help me feel better and protect my nerves from permanent damage, which is always a good thing. 

After all that drama, were both surprised and delighted, when we found a little package waiting for us at home. It contained delicious triple chocolate cookies for us, made lovingly by MLS, 2l's lovely sister. Despite the fact that she has a demanding job, a well as two small kids, one of which is only a few months old, she keeps finding time to bake, and is so thoughtful and kind that sends us a batch of her goodies every few weeks. Thank you very much! As always, the cookies are delicious and sure to be gobbled up fast! We really appreciate not only your tasty gifts, but most of all the emotional support that come through them. We feel very lucky to be recipients of such tasty kindness, and we are in awe of all the things you do!

Well, in my first incarnation of this posting, I had a lengthy section on thanking my other friends and my family for all the extra nice things they are doing for me. However, then I lost my wireless connection, and with it that chunk of my posting disappeared forever. Tonight I lack the energy to retype it, so I'm sorry folks, but this will have to wait for another posting, when I have more energy than tonight. I guess that anemia is starting to rear its head...

So I'm off to bed now, hoping we'll all be able to get some restful sleep.

Wednesday, August 12, 2009

Resting at home to get ready for chemo # 6

I've spent the day just resting and enjoying to be back home again. I didn't even have the energy to unpack the bags of stuff we brought home from the hospital. Well, actually I would have had the energy, but I just didn't want to confront the thought of the hospital. Instead, I petted the doggie, wandered through the back yard, and threw the ball for the furry one. What a wonderful luxury!

Tonight I am trying to get mentally ready for chemo # 6, my second round of Taxol. I called the oncologist today just to confirm that he considered me fit to poisoned again tomorrow. He said if I feel fine that he did not have a problem with me receiving the chemo as planned. Nonetheless, it was important with me that he agreed with what the infectious disease specialist thought/wrote in my discharge papers. 

I must admit that I am a tad more nervous than usual about this round of chemo, though. My concerns are not so much about the pain, as Dr. V will give a prescription for vicodin tomorrow in case the pain comes back as badly as I had it this time around (the doctors' consensus was that the pain probably came from the Taxol). Rather, I worry a bit that the fever might come back, necessitating yet another trip to the ER and/or hospital admission. That would be bad on many levels. Not only do I not care much for hospital stays, but a renewed fever may well mean that it is a tumor fever.

When tumors are killed off by chemo, it is generally a good thing -- except when you are receiving adjuvant chemo, as I am, meaning that all that should be left in the body are microscopic cancer cells hiding out in remote areas of the body. Those remote cells should not be able to release enough tumor necrosis factor and other chemicals to produce prolonged and repeated fevers. Only sizeable tumors should produce that kind of effect. In other words, a renewed fever may indicate that ground glass opacity in my lung really indicates a tumor. And that would be very, very bad. So I will be nervously checking my temperature in the next few days. If they send me to the hospital again with a fever, the ending may ultimately not be as happy as it was this time around.

But hopefully all will go well. I took my usual dose of five decadrons tonight, to be followed by five more tomorrow. To help me sleep, I also took some Benadryl (rather than Ativan), as my postnasal drip is still there, and the meds help me breathe -- and make me sleepy, which is a desired side effect at this point. More balancing of meds and side effects -- I'm starting to learn so much more about drugs than I ever thought I would. 

Overall, however, I am in really good spirits, ready to welcome another round of the good poisons. This round, and then two more. The end is getting closer, and I am very happy about that. I just need to make it through the rest of this (and perhaps the radiation, too -- haven't decided about that yet), and then things will get better. Thus I try to keep in mind the desired result of all of this: my one and only chance to be cured of this nasty TNBC. So those cancer cells had better prepare to be taken out, because I am fighting them with all I've got!

Tuesday, August 11, 2009

Finally -- home, sweet home!!!

I am very happy to report that I 'passed' my last two tests and was sent home from the hospital. So as of 5 p.m. today, I am back home again!!! Yay, what a relief. Although it's another crazy hot day, it feels so good...

The final diagnosis is a relatively minor viral infection that my immune system should be able to fight off. The CAT scan apparently showed something called a "ground glass opacity," which is a diffuse indicator of infectious processes, or perhaps interstitial water accumulations. I was told to watch for a worsening of my cough, and seek medical help if it doesn't go away in five to ten days. If a CAT scan then shows the opacity still there, I will need a bronchoscopy. This doesn't sound like fun, so I'm hoping my remaining issues will resolve. 

Just as we were ready to waltz out of the hospital, a woman arrived with huge bouquet of balloons with "Thinking of you" written all over and a purple teddy bear attached. How sweet of my friends to send me such a nice bouquet -- the only kind that is actually allowed on the oncology floor (plants may harbor infectious disease that could be dangerous for us immunocompromised folks).

Finally -- a fever-free night!!!

Yay!!! For the first time in over a week, I have made it through the night without developing a fever! It feels like such a milestone. Hopefully my CAT scan results will come back clean today, and the doppler won't show any additional thromboses. So if I 'pass' those last two tests, they might actually let me go home later today...

I so can't wait for that... With luck I've managed to hold on to my room with a view, even though I'm technically no longer on isolation. If I had to stay longer than today, however, I fear my luck might run out and I might end up stuck in a room with no view, by the noisy door, and possibly with an inconsiderate roommate.

So keep your fingers crossed, everyone, that I will have good news to report later today...

Monday, August 10, 2009

CAT scanned!

I am back in my room now, glad to report that the CAT has finally been scanned. Wait, I mean I've finally had my CAT scan. However, I got very close not having the scan today, at all. You may ask yourself why on earth would I not get that scan after I've been waiting for this since Saturday morning??? Well, the answer is because the technician running the scan was convinced that I MUST have that scan with prednisone and benadryl premedication and CONTRAST!

The young man was very convinced of this idea, even going so far as trying to call Dr. V (who apparently put in the order), and calling in the attending radiologist. The odd thing is that he made this suggestion after I had just fasted four hours and chugged down five glasses of some awful fake limeade type oral contrast agent. Premedication would have meant I could take the scan no earlier than tomorrow. When the radiologist came in, he asked me a few questions and I explained the situation to him. I said, listen, I've waited for this scan since Saturday. Furthermore, I've been in this hospital with unexplained post-chemo fever since last Wednesday. I'm just about well enough to go home, and now you want to try out whether I'm really allergic to the contrast or not??? I told him I had enough medical issues already, notwithstanding the crash cart they keep "somewhere down the hall" (oh the reassuring thought!).

Luckily, the attending radiologist (who would be reading my pictures) was a bit more level-headed. After hearing my story, he suggested that I could take another test to see if I had a pulmonary embolism. As he described the test I told him "been there, done that -- last week! -- came back clean." This is really to look for an infection source, and to see what that strange shadow from the portable x-ray was. Then the radiologist agreed that an IV contrast-free scan would suffice. 

Honestly, what was that technician guy thinking? That my various doctors weren't aware of the possibility of premedicating me??? My doctors had raised the possibility, but ultimately decided against it. So who is he to question their judgment? I felt as though I had to actively defend myself from his insistent onslaught. And if I hadn't been as steadfastly stubborn, I still would not have received my scan! Ridiculous...

As you can see, I'm a bit miffed at the tech. Ok, I'm pretty miffed. But at least I stood up to him. Now let's hope for good scan results with sufficient detail that will hopefully show me in good health. I feel decidedly un-feverish tonight, and hope that I will stay this way (although I should cautiously add that I haven't had my vitals taken since 4 p.m. since I missed the 8 p.m. rounds due to my CAT scan). Hopefully this will be my last night in the hospital -- and I'll be getting out just in time for my next round of taxol.

Tomorrow I am supposed to have another doppler scan to check on my UEDVT. Assuming the CAT scan comes out clean, and the doppler shows no further clotting or other problems, I may be on my merry way home sometime tomorrow. Can't wait for that!!!

CAT scan finally scheduled!

The nurse just came in and told me that my elusive CAT scan has finally been scheduled for 7:30 tonight. Until then, I am to be NPO, i.e. not to eat or drink anything. At least I have the IV line still in and am getting saline. But this will be a LONG wait.

This scan is very important, as it will (hopefully) tell what that mystery shadow on my last chest x-ray was. Best case scenario would be that the scan finds nothing and that shadow was just an artifact of the portable x-ray machine they used. Worst case scenario would be that what the x-ray showed were really metastases of my breast cancer. This would catapult me from a stage IIa early breast cancer patient to a stage IV terminal breast cancer patient. See why I call this "worst scenario"? Needless to say we're really hoping for the best case scenario. 

It was odd, as the infectious disease specialist, who saw me first, seemed to believe that tumors were the more likely of the options. The oncologist, who followed a few minutes later, seemed to think that the infectious disease guy thought it more likely to be some viral thing. They had done a viral panel, but those only detect a handful of viruses, anyway, and they are prone to false negative results. 

So it seems that my growing impatience and urgent appeals to the doctors finally did kick things into gear a bit more. Ha! The CAT scan is finally scheduled. That is good. Tomorrow I am supposed to have another doppler scan for my DVT, just in case that is getting worse.  Provided that I 'pass' both tests, I finally may get to go home tomorrow. 

Needless to say I'm a bit anxious about the CAT scan, as I have a lot riding on it. Two words come to mind: test anxiety. It feels kind of like waiting for a big, important test you must take -- when failing the test will have life-altering consequences. Literally. 

Sunday, August 9, 2009

STILL no CATscan...

Another day has come and gone, and still I didn't get the CAT scan. Apparently radiology did finally call for me, but complained that I had received food. In the absence of different doctor's orders, they insist in doing the scan after the patient has been NPO for a couple of hours. Of course my doctor left unreadable instructions (and of course, he cannot be reached over the weekend) -- even though I'm allergic to the contrast material. Besides, without being given a specific date and time for my procedure, how on earth can they expect me to remain NPO for almost TWO days???!!! This must be some sort of particularly cruel joke...

Thus I couldn't take advantage of the one opportunity for a CAT scan that radiology offered me. How frustrating... But what are they going to do? Give me the contrast material when they know (and I tell them) that I'm allergic to it? Yet another day wasted. And of course I ran a fever last night, and once again late this afternoon. The infectious disease people never even came by my bedside today. How very, very frustrating. 

At least I had the first real and delicious food since arriving at the hospital. Of course, this had nothing whatsoever to do with the food they serve here. Instead, my friend Starman was kind enough to make a delicious salad with mango, avocado, black beans, and a lime vinaigrette. It was full of healthy fiber, protein, and very very tasty. Now that's what I call food! The hospital food is either oversalted, undersalted and/or overcooked and overprocessed. You can probably tell I'm getting tired of all of this.

Hopefully, tomorrow will bring readable doctor's orders, a successful CAT scan without allergic incidents, and good test results. I'm surrounded by all these medical professionals, and nobody is able to give me a diagnosis? Come on, what's wrong with this picture? Maybe I'll need to have a contest between the different departments? Offer a prize? Start throwing hissy fits?

Saturday, August 8, 2009

No CAT scan today...

We waited all day, but I didn't get to have my CAT scan. I realize this is the weekend and all, but a suspected case of pneumonia (or worse?) -- at least to me -- seems urgent enough to do the scan pronto. But I suppose the CAT scan machine only got to work for the ER today...

With each passing day, and each returning fever, it is getting a little bit harder to keep up my spirits. I'm getting restless, want to get out of here and be home rather than waste my time in solitary confinement here. I am not really supposed to leave the room (and need to wear a face mask if I do), so I am cooped up in my little slice of the hospital. Granted, the view is great, but by now that's a case of "been there, done that." 

Thank you to all of you who have sent me such loving and supportive notes. These notes are especially appreciated now as my spirits are gradually sinking. I'll eventually get around to answering them all, but for right now I just tire easily and can't work on the computer too long. So until you receive a more personalized answer from me, please know how much appreciate your note.

That fever just keeps coming back...

How annoying, that fever just keeps coming back. I had an elevated temperature last night, and then once again this morning. Whenever I spike a fever they give me tylenol, which brings it down. But it seems that effect never lasts very long.

Apparently, they saw something on my in-room x-ray they took a few days ago. However, since they used a portable machine to take the images, they could not determine what it was. The infectious disease specialists Dr. M mumbled something vague about possibly pneumonia or perhaps a "soft tissue density" -- whatever that is. Since I keep spiking fevers, they now want me to have a CAT scan to determine the nature of that "something" on the x-ray more precisely. The problem is, though, that I am allergic to the contrast medium they really should give me for the scan. So I suppose they'll have to take mine without contrast. 

Hence, the good news is that they still haven't found anything -- and the bad news is that they still haven't found anything, i.e. no explanation for my recurring fever. What a bummer... I'm getting very, very tired of this "stump the doctor" thing...

Friday, August 7, 2009

Still stumping the doctors...

I continue to stump the doctors, as they cannot find anything wrong with me, other than a white blood cell count that is trending downward, and a fever that insists on coming back. So they continue to keep me in solitary confinement. I guess I shouldn't have started that food fight...

Thus the doctor extended my hospital sentence for at least another 48 to 72 hours, meaning I will not get to go home for the weekend, unfortunately. What a bummer, I'm getting tired of this place even though everyone here is very nice. But I just want to be at home, in familiar surroundings, with the doggie curled up next to me, and me curled up next to DH. Sigh...

I really, really wish that silly fever would make like a tree and leave... After all, I am supposed to get my next round of taxol this Thursday already! Yikes.

Thursday, August 6, 2009

The guessing goes on...

I'm still in the hospital and will be at least until Friday afternoon or Saturday morning. So far, every culture has come back negative. So today they called in the infectious disease specialist, who also doesn't think I have anything, but will try culturing more stuff and otherwise observe me. As you can see, this may take a while.

I had a very sweet and very quiet roommate this time, but they just moved me to an isolation room -- just in case I turn out to be infectious after all. I'm on the cancer ward, so there are plenty of immunocompromised folks around that need to be protected from me, apparently. My roommate's family was sad to see me go, and so was I to be moved from them. They were all very sweet and so nice to me. 

Other than that, there isn't much new stuff to report. Had another fever spike overnight and woke up drenched in sweat. This morning the temperature started creeping up again. When will it all end? Who knows.

At least I finally remembered to talk to my oncologist about the vitamin B6. He said it was fine to take it, except the day before, the day of, and the day after chemo. Hopefully that will help somewhat with the bone pain and all that. I'll let you know.

Wednesday, August 5, 2009

Deja vu at the hospital all over again...

This morning brought me chills and a fever of 102.7 F, so I called my poison man. He was worried I might have a pulmonary embolism, so he told me to go the ER. Another day, another trip to the ER. This time we stayed in the ER from roughly 10 a.m. to 5 p.m., when they admitted me to the hospital for observation.

Before then, they sucked all kinds of blood out of me for more cultures (which I assume will find as little as Monday's cultures did), and did a scan to rule out a pulmonary embolism. Since I am allergic to flouroscopy dye, they ended up doing a radionuclear scan instead. Luckily, my lung checked out "100% normal and perfect" according to the pulmonary specialist who just stopped by. That is excellent news, particularly since the radiologists almost always find something to complain about and only give an 80% or 90% normal rating. So apparently my lungs are especially normal -- for once a good thing!!!

The lung man thinks the cough may thus still stem from my postnasal drip and proposed ways to manage that better. Exciting. However, they still don't have a clue where that fever is coming from, which is why I'll apparently get to meet an infectious diseases specialist sometime in the near future. Well, that sounds exciting. So for my return visit (even the nurses who checked me in remembered me...!) at least I am getting to take different tests and meet new folks, as well. 

Once again, I drew the short straw, though, and got the bed by the door. But tonight I'll be knocked out by Benadryl, anyway, and I brought ear plugs and a eyeshade just in case. Since the last bad experience I've wowed to be prepared... But this time my roommate seems much more sedate and quiet, even if she will have one of her sisters here at all times as a private nurse (four of her sisters actually are nurses, and they are taking turns!). But they are all very nice and very considerate. So that's ok. 

I sent DH home at seven p.m. to let the doggie out and feed him. The poor thing has had to spend the day by himself in this heat -- even if we did turn on the AC for him. In the meantime, I have resigned myself to my renewed hospital fate. I even received a belated dinner. If I can find a few more blankets to keep me warm I should be ok for the night. Right now I'm feeling a tad chilly, even though I supposedly no longer run a fever. Go figure. 

So here I am on the hospital's cancer station, experiencing deja vu all over again. But this, too, shall pass. My guess is they will find nothing, send me home with more prophylactic antibiotics, and chalk it all up to the chemo. But at least other nasty causes for this fever will have been ruled out, which will be reassuring. Thus I consider this my contribution to the nation's economic recovery (a "victory fever" of sorts???? Boy, my health insurance must hate me!) ...

Tuesday, August 4, 2009

Preliminary absence of bacteria

Nurse C called me with the preliminary results from all the blood and urine they took from me to culture yesterday. Well, apparently I am not very cultured, as everything came back with a negative results. Final results should be available tomorrow. My CBC also looked ok, even though my white blood cells were a bit low, since I did have enough infection-fighting neutrophils. So it looks as though the news is good: no systemic bacterial infection. 

I'm coughing more today, and still running a temperature. So I may be fighting some sort of little respiratory virus that will just have to run its course. Go immune system and get that little virus out of me. I'm tired of running a temperature during this hot and humid August weather!!!

Painwise I'm also doing better. The Vicodin really help me combat the pain. I started reducing the dose today as I didn't feel so bad when my six hours were up, and eventually took only three half pills during the day. Tonight the pain is coming through again, though, so I may have to pop a whole one in a little while. I was never into the whole "pop a pill" thing, but cancer sure made me change my tune on that...

Monday, August 3, 2009

Another unscheduled trip to the doc...

Today it was time for yet another unscheduled trip to the doc. This morning I was once again running a temperature and called it in to Dr. V's nurse. She told me to come in immediately so that they can draw blood (always fun for me!) for various cultures. Thus we headed back over to the Cancer Center. 

The blood draw was indeed fun, as in order to determine whether the chemo port is infected they cannot solely take blood from there. Thus a blood draw from my right hand (about the only place left where they can stick me) was necessary. It was torturously slow, as the blood came only in drips even though the nurse got the vein on the first stick. For blood cultures, they have to fill those largish bottles with blood, so they need a lot, which took forever. My vein didn't really gush until the nurse took the needle out. Go figure... The port stick was also  fun and hurt this time as I was at an odd angle. Plus, otherwise reliable nurse L forgot to flush the port with heparin before she removed the blood draw needle. So she needed to access the port twice -- but thankfully she could use a smaller needle for the second stick, making it less painful. Boy was I glad when they were done poking me and sucking blood out of me. 

They also obtained a urine sample, so now they will be culturing me from every which end. Let's hope nothing turns up. Unless they find something (which could take several days) Dr. V doesn't want me on any antibiotics. So I am once again home after my blood sucking expedition to the Cancer Center. 

On the pain front, however, there is good news to report. Dr. V's nurse C said that it was ok to use the Vicodin I had leftover from the mastectomy. Luckily, those finally cut through the muscle pain. What a difference!!! The nurse got quite mad at the on-call oncs who had told me to take over the counter stuff (particularly the ibuprofen, which I really shouldn't take while on blood thinners). Without that pain, I am a much happier camper again!!! Unfortunately, the Vicodin seems to make me slightly nauseous, but that is easy enough to control with food and a small price to pay for being almost pain-free again after the debilitating joint pain. With those Vicodin I can see myself taking further Taxol treatments, but without it would be another question...

When I call for my preliminary blood results tomorrow, I need to remember to ask about taking vitamin B6 or a B-50 complex, though. Today I was too strung out by all that sticking to have enough wits about me to ask. Stupid chemo brain doesn't help, either. 

But overall I feel that things are improving, which is such a welcome change after this rather uncomfortable weekend for me. It was really sweet of DH, too, to stay home with me unasked and take care of me and drive me around to the doctor's office. How can you not love a sweet, caring, nurturing, and supportive guy! I'm one lucky gal...

Sunday, August 2, 2009

Like getting hit by a bus

Today brought more joint and muscle pain, and another call to the on-call oncologist since my temperature promptly went back up once I went off the Tylenol. This doctor also didn't seem that concerned by my temperature since supposedly the Taxol doesn't depress the bone marrow as much. So he told me to take no more Tylenol, and to keep watching for a rise in temperature, or new symptoms that may arise. 

When I complained about the joint pain, the oncologist suggested that I take some ibuprofen. This is a bit strange, since I'm on lovenox to thin my blood due to the DVT and everyone else told me to stay away from ibuprofen and other NSAIDs while I'm on blood thinners. Yet this doc, even after I reminded him of the lovenox, said it was fine "as long as you don't take much." He told me to "take two and see if it works." Of course, he seemed to forget that ibuprofen also lowers fever. So much for his instructions to not take more Tylenol. It was rather weird. Not only was his advice conflicting, but he almost seemed like he never even bothered to look at my file. Odd.

Anyway, I took two ibuprofen tablets, and they helped somewhat with the joint and muscle pain. It was far from complete pain relief, though. I am finding the taxol treatment quite a bit harder to tolerate than the AC regimen. A bit of nausea and fatigue I can deal with, but this joint pain that makes me feel like I got hit by a bus is quite debilitating. My knees hurt so badly I can only make it up or down the stairs if I hold on to both railings and take it one step at a time. Even when I just sit or lie in bed almost all of my joints hurt, no matter how I adjust myself. Taking a walk with the dog this morning proved to be quite painful, as every step hurt. Is this what it feels like to be a ninety year old with osteoarthritis???

Luckily, tonight my temperature finally started to go down and the bone pain is abating a bit. When I came upstairs to go to bed, I scampered up the stairs like a seventy-five year old that got hit by a bus. That's at least fifteen years of progress right there. I just hope that the temperature stays down and the joint pain goes away entirely. I'll have to bug my poison man about better pain relief, as in this day and age, I do not feel that I should have unrelieved pain at all. None of that "take two tylenol and call me in the morning" kind of thing. 

Given that I tolerated the taxol less well than the AC chemo, I am particularly glad that I wasn't traveling this weekend. We had considered going to our niece's wedding shower, for which almost the entire family came up. However, attending would have meant a nine hour car ride for us that I simply could not have made. In addition, running a temperature while being so far from my oncologists and the local ER/hospital would have be nerve-wracking. So while I miss everyone and wish I could have been there, I think staying home was the right thing to do. Hopefully I will have better pain meds and know how to deal with the elevated temperature by the end of the month, when our niece's wedding will take place, so that at least we will be able to attend the main event. 

Saturday, August 1, 2009


During the day, it looked as though my temperature was holding steady, but tonight it started going up to 101.1 F. So I gave in and called the on-call oncologist for advice on what to do. Much to my surprise, he doesn't want me to come in to the ER. Instead, he gave me permission to take extra-strength acetamenophen to get the fever down. It should also take care of the residual joint pain I've been experiencing. Phew. 

I hadn't taken anything earlier, since I didn't want to suppress the fever before we knew where it came from. But based upon Thursday's bloodwork the oncologist thought I should be fine. Apparently, the Taxol can cause a fever just because... If I am still running a temperature tomorrow, despite the acetamenophen, then I am supposed to call the service again and get re-evaluated. Let's hope that won't be necessary -- and I am sure glad they didn't order me to the ER like last time... But I'll have my stuff ready just in case (this time with an eye mask and ear plugs to counteract noisy ERs and roommates!).

And here comes the next crisis .... ???

Yesterday was a pretty good day for me, but today the protective effects of the decadron have worn off. Funny how I dislike its side effects, but how I cannot seem to live without it, either... So this morning around 5 a.m. I awoke from a fitful sleep because my arms, legs, and joints were hurting like nobody's business. Even my fingertips were painful, feeling tingly and burny. Not a good feeling to awaken to...

On top of it all, I felt hot and sweaty and had chills. So I took my temperature, and found that it was at 99.9 F. Over the next hour or two, it rose to 100.4 F, just under the magic line that requires an urgent call to the doctor. Yikes, I don't like the way this looks nor feels. 

Luckily, that bone and joint pain got much better once I started moving about some and stretching. Right now it is just a dull ache in the joints. DH made breakfast for us and made me some decaf coffee so I could replenish lost fluids. That helped me feel better, too. The temperature also seems to be receding a bit, staying just barely above 100 F, or even slightly below. What a way to spend our anniversary...

Thus I am hoping that I will continue to improve as the day goes on, although I am worried that this will require yet another trip to the ER and/or stay in the hospital until it's all sorted out. Yet I would really, really like to avoid that, as the last trip wasn't all that much fun...

I'll keep you updated.