First Taxol

Yesterday: Just got home from my first of twelve weekly Taxol infusions. I think it went fine, and not as scary as the AC, but they started me off with 50 mgs of Benedryl, with which I have always had a hard time, and it made me feel squirmy and then flat knocked me out! I'm coming to now, and feeling okay. This is supposed to be easier to tolerate than AC, so here's hoping. Will keep you posted.

Today: Well, today I feel just fine. Worked my short day with no problem except a bit of chemo-brainedness, struggling to find words during documentation, being somewhat slow to formulate statements. It's easy and convenient to blame that on chemo, but truthfully, it's something that had been happening a bit before treatment began. I have great energy today-walked the dog tonight for the first time in several days, and am finally getting back to this blog as well. I'm hoping that Taxol will go like this, that I will feel more like my old self again, without nausea, having energy to take on some projects and get back to exercising more regularly. I was given a clean bill of heart health and told that it's safe for me to get back to vigorous exercise again. I was cautioned against it during the AC treatment due to its potential cardiotoxicity. With my heart intact, I'm eager to return to it. 

I called and spoke to one my nurses today, Glenda, who seems to always be on top of everything and very helpful with details. I told her about my problem with the Benedryl yesterday and she said she would look into what else is available as an allergic reaction preventative. She said I could just take a Claritin, which I have also had some trouble with in the past, but I may try that and see how it goes. She said she would research what else is available, but apparently some people have severe allergic reactions to the carrier used to infuse Taxol,  potentially life-threatening, and oncology centers will not administer it without an antihistamine of some sort.  

I'm starting to think about future projects too; trying to avoid thoughts of "what if" and nervousness about future checkups. I keep saying I'm fine, I just had a little tumor. I truly believe that, but still have the nervous feeling about putting my breasts to another imaging test. And when those nervous feelings come up, I pretty much squash them. But I do need to start planning and to get in touch with my doctor to schedule the next MRI. I sure am tired of seeing doctors, much as I appreciate them.

My own hair

This is the hair piece I had made from my own hair. I really love wearing this; it's great to once again have the familiar feeling of my own hair on my shoulders. It also feels great, from time to time, to not wear any hair at all; I'm glad to have options. Mom and Dad, thanks for this.

Photo from trip

I am not great at shooting myself with the computer's built in camera, especially in the bright sunlight, but I wanted to get a shot of me with a background of the beautiful view we've enjoyed for the past few days. This is the best one I got.

Blog entry 7/22/10 1:20 pm-Alone on a Mountain Top

Blog entry 7/22/10 1:20 pm

Alone on a mountain top

It’s our 3rd day of doing not much of anything-snacking, napping, reading, bathing, preparing and eating meals, talking and not talking-it’s been a desperately needed break. We’d had more ambitious plans for this trip, and had thought that in between some of the snacking and sleeping we would drive the approximately 30 miles into Cookeville-a town we’ve visited before and wanted to go back to- and poke around, but the drive up here through the windy mountain roads left Dave carsick the first afternoon, and a heavy rainstorm yesterday afternoon convinced us that we had ample excuse to stay lazily in one spot. How long has it been since we relaxed like this, outside of our home environment filled with responsibilities and distractions? Much as I love my dog, I’m happy to have her safely tucked away at the veterinarian’s office and not requiring any of my attention.

Our friends Natasha and John have lent us this cottage at the edge of the Cumberland Plateau, overlooking lovely Cordell Hull Lake, and with all the luxuries of home save television and internet, my two addictions. At first, thinking about this trip, I was sorry that I would not have the opportunity to relax with those media options, but as we are here, I am very grateful to be forced to detox from them. We have not been without electronic entertainment anyway, (I’m writing this blog in a word processor and will post it when I get home) and we indulged in a French movie film fest last night using the home projector and screen that is kept here. Now we are watching storms blow across the lake, wondering if they will arrive here, and trying to time a trip into the tiny town of Granville to avoid driving in the pounding rain if the storms do make it to us. It will be our first time off of this property since we arrived here on Tuesday, and we have basically eaten all of our food, so need to make the 10-minute trek.

I’m feeling quite well but quite lazy on this trip; I keep thinking about trying some yoga but not having the energy for more than a stretch or a few minutes of deep breathing. I thought about walking down the paved drive and back up for some exercise, but it has been so hot! And buggy; I have mainly stayed on the screened porch to view the scenery as I am so bug allergic, and although I can tell that my white and red blood cell counts have improved, I still don’t want to take a chance of a major bug bite such as what I suffered last year. And I’ve noticed poison ivy as nearby as the edge of the front porch steps; I’m sure my immune system is not up to that. So there is my excuse for my laziness-too much nature around here to be wary of - I’m staying primarily indoors.

A retreat, that’s what this is. Last time I was able to retreat was over a year ago when I went to Beersheba with my game playing crew. That was an amazing weekend; hope to do it again someday soon. Yesterday I got Dave to play Risk with me, which is not quite as much fun with 2 players, and he soon gained world domination by winning South America and Asia; I capitulated gladly, just grateful to have had a chance to play. Can’t remember the last time Dave and I played a game, nor the last time he left Nashville, and the last time we were out of town together has to be a couple of years ago. That is way too long. We are due to make retreating a more regular experience and decided to aim at all long holiday weekends. Labor day is coming up, and I need to make some kind of getaway plans for it.

It’s also been great to just hang out without wig, makeup or clean clothes. No wondering is someone going to come to the door; I can walk around nekked if I please, bald head and scars uncovered without fear of needing to even having to think about covering them up. I’ve been trying to figure out that motivation to cover up my head, aside from concerns about being burned by the sun. I know people will stare at a bald headed woman, but I don’t think that is why I’m wearing the wig. At work, I know exactly why-I don’t want to have to reveal my status or discuss the baldness unless I chose to. I don’t want all conversations to be about me, or for my patients to have to deal with my treatment ahead of their own. I’m not hiding it, but I want the opportunity to choose to disclose it or not. But here in Granville where no one knows me, why do I feel compelled to wear a wig into town? Maybe for the same reason - I just don’t want to have to deal with the subject unless I choose to. I guess that’s it. An openly bald headed woman will be aware of the impact of her baldness on others and it could be tiresome, maybe more so than the discomfort of wig wearing.

Speaking of discomfort, my right foot seems to have improved some, but still worries me a bit. The 4th toe’s color is lighter, but still abnormal, and its painful spots are less painful. I’m still keeping an eye on it but not worrying much about it right now. I have an appointment with a podiatrist in a couple of weeks, and hope that it will be all healed before then, although I’ll probably go anyway just to make sure there is no regime I should be pursuing to avoid future foot woes.

Well, it’s been nice writing, but I feel the call of another snacking/napping/reading cycle preparing to begin.

My Foot

Written last night, on Saturday. 

I'm having trouble with my right foot. Partly because I always put on some calluses when I start wearing summer shoes; those little blisters and sore spots are not too troubling, but there is a big, empty blister on the side of my 4th toe where the hard bone of the pinky has irritated it, and it's not healing. I guess it's the result of wearing closed-toes shoes all the time due to my job's requirements. I showed the spot to the oncologist last time I saw her and she insisted that I switch to open toed shoes, so I'm wearing them basically all the time now, even at work, which is frowned upon when providing patient care. My doctor had to write it as a prescription so that I can be confident to avoid any kind of disciplinary action. It seems to be helping, but the spot is still sore and the toe is kind-of black and blue. I guess I'll have to see a podiatrist if it is still persisting after we get back from our get-away next week. I'll have to be very careful while we're gone, and won't put my feet in the lake. If anyone out there knows how to treat something like this, please let me know.

Although this slow toe healing suggests that I'm still experiencing a lack of fast growing cells, others of the type seem to be doing okay. The hair stubble on my head seems to be a bit stubblier, some little nicks and scratches on my arms and legs that came from who knows where are healing in a fairly normal manner, and my mouth seems to be doing okay-no sores, and greatly diminished pain from the neuralgia I have experienced there for a couple of years now. I'm hopeful, confident rather, that the chemo has done it's job on any circulating cancer cells, though. And I'm hoping for fur on my head soon.

Cravings

I felt a lot better today. Either the Zofran or the time passed from the last infusion has helped my tummy feel less raw, and I had pretty good energy today, too. Got caught up at work and got home fairly early and had been running errands and helping Dave out with some computer stuff until my hunger and the day's cravings got the best of me, and I talked him into going out to dinner at a local Chinese buffets that offers all-you-can-eat crab legs. I had been dreaming of that all day.

People say the chemo experience has a lot in common with pregnancy, in the way one feels, I mean. There have been several days that I've had surprising cravings, and I just have to give in to them. The food is not that great, but the crab legs are fine, and I was just desperate for them.

Earlier this week, I helped Dave design an ad. He's trying to drum up some new music students and let folks know where he's teaching these days as he's moved to a different music store in the same area. The ad will run in a local paper, and didn't require a lot of skill to put together. I'm no graphic artist, but I have put together a lot of ads and album covers during the time that we were in the record business. It's been a long time, though, and I'm very rusty, so I had to spend a lot of time on the phone with Kit, my design guru, figuring out how to correct the resolution. Got it done, finally, and it was very satisfying to exercise that creative muscle, even if it did cramp a bit on the way.

It will be a busy weekend preparing to get out of town on Tuesday. I'm craving that, too.

Echoes and EKGs

When I started this chemo journey, I thought my mantra for daily activity was reasonable-go to work, walk my dog, write my blog. I figured these were the things I would do every day, or at least 5 days per week. I soon found a myriad of other little tasks to add in that should be done daily-take my pills, prepare meals, squeeze wheatgrass juice, do the healing walk, call my family, and on and on-this  doesn't even take in the things that nature dictates. Days are full, and with the best of intentions, I'm still writing this blog 2 or 3 times a week rather than daily and walking my dog less often than she would like, no matter how hard she tries to remind me that I have the commitment and that it is good for me.

I have not, however, missed a single day of work during this experience, although there were a couple I wished I'd missed; today was one of them. I was surprisingly nauseous the last couple of days, and this morning actually thought I was going to toss my breakfast. I found it surprising that so far into the recuperation from the last of the big-guns chemo I am suddenly having increased digestive repercussions, but so it is. I will keep taking the Zofran that I thought I was past needing.

Today I had an EKG and an Echo cardiogram as part of one of the studies I am participating in. I'm not sure if this one has to do with the Avastin that I may or may not be getting, or whether it is simply about the A/C, as Adriamycin is potentially cardiotoxic. I will see the cardiologist in about 10 days and then I'll find out the results and learn whether the chemo has damaged my heart/vascular system, but I am thinking not. Although I am certainly more tired than before treatment, and have lost some muscle mass, I am still more active and have lower blood pressure than the average person. I keep saying "I am very lucky that I am basically a very healthy person, I just had a little tumor", and I mean it. I'm sure the chemo experience is much more challenging when other body systems are already compromised by illness. Chemo itself can cause side illnesses, but I refuse to believe that it has done so in my case. I just feel too good, even if a bit green around the gills. That's today; tomorrow is another day!

I did come home from the day and rest in bed for a couple of hours, then made one of our favorite dinners: turkey bacon, basil and tomato sandwiches on Ezekiel toast. Mayo and pesto...wow-that's a fabulous dinner. I felt much better after that. You should try it! Walked the dog tonight and am writing my blog; I'm really on a roll.

Queasy but Good

Today started with a massage-always so helpful. Yesterday I had that "everything hurts" feeling; anywhere I touched on my body was tender. Neck, shoulders, back of the head-everything was painful. The massage helps take this away, to push the chemicals through, out of the tissues and into the systems that will move them on out of me. I had a fairly high-energy day after the massage, doing some food prep and tidying up around the house, clearing surfaces that have been cluttered for weeks, as I can't seem to keep up with putting things away even under normal circumstances.

Grace and Billy came and brought dinner and a friend from out of town that they had been wanting me to meet; she was fun and gave me some psychic insight into the progress of my healing. All good news and good advice. A great meal and great friends. I am very aware that the loving energy of my friends contributes hugely to my largely positive experience of this prophylactic chemo regime. I feel well, I expect to be and stay well. I feel the energy from my friends helping me with my resolve to not let this tumor's stray cells develop into further tumors. I feel confident that I'm going to be successful in this. I don't know why prayers and well wishes work for some and not in other cases; I know they are palpable to and significant for me. And sharing a nice meal is helpful too.

Day after infusion #4

Okay, I can't believe I did this: I had Dave drive me to work today so that I would not have to wait alone after work, getting more and more tired as I did after the last infusion 2 weeks ago, for my Nulasta shot. So Dave picked me up, we went to Gilda's club to pick up some papers I was supposed to take home, we went to eat lunch, and then we went shopping and home. At 7:30 pm, talking to my Dad on the phone, I had the blinding realization that I had completely forgotten the important final part of the chemo, the Nulasta shot. They have told me that it is supposed to be taken from 24 -48 hours after the end of the chemo, I'll be pushing it. Drat-I'll go first thing in the morning and it will be about 42 hours.

I'm feeling pretty good today though.  A bit queasy, a bit tired, but pretty good. Just chemo-brained to have done something like forgetting my shot. I'll go in as early as I can tomorrow to get it. Rats.

I am trying to figure out a near-by getaway for the days of the 21st-23rd; a little time in a hotel for a change of sceanery, messing around in antique stores, eating out, just getting away. I don't know a good place, and we can't be gone long, even if I can get the time off of work. Dave has students on Saturdays and Mondays. But it would be nice to change the routine.

Yesterday my doctor told me that my white blood cell counts are doing great, but my red cells continue to drop. That's why I'm so tired. The iron I'm taking, she says, will not help with my anemia as it is not iron-deficient, it's just chemo doing its job. But I notice that, placebo effect or no, it does make me feel better. Along with B-vitamins, if I can stomach them.

Today I learned that my latest genetic test, checking a rearrangement of the BRCA I & II genes, came back negative. So although my family cancer history is so strong toward women's cancers, I don't seem to have the actual genetic predisposition. This is good news, although still leaves me wondering how this happened to me. There is another test, for a condition called "Cowdens" syndrome, that is recommended for me, but I am not sure if I will take the test or not. I'll have to learn more about it, and decide just how much surveillance I feel is adequate, or even recommended, as every condition scanned for is anxiety producing.

Well, anyway, today was a good day. And that's always good news.

Eve of the 4th Infusion

Tomorrow is the last of the AC infusions. I'm glad it's the last of the "Red Angel, but after this, the 12 weekly Taxol infusions begin; they are supposed to be easier to deal with, but it's still a trip off to the unknown. I'm trying not to think about it; trying to not be anxious. Staying busy with work and preparing meals, took a walk for the few free minutes I had at lunch. I will listen to my IPod while falling asleep tonight, but I've kept myself SO busy that I haven’t had time to do all of the meditation, yoga, Tai chi, etc that I had intended. My anxiety level is fairly low, so I guess I’m doing okay. 

I may take an atavan to sleep on though. I want to get a good nights sleep, and I generally don’t on the night before an infusion. I’ll start to angst over chores left undone (there’s never enough time to do them all), CD orders not filled (and heaven knows we are eager to continue to sell them), people who have sent me messages of support that I have neglected to reply to via email and phone, and all manner of unfinished business. I struggle with my 2 thoughts on medication at this time in my life-on one hand, I figure I might as well go ahead and use pharmaceuticals as long as I’m also doing the big drugs, but my natural tendency is to keep them to a minimum, and usually I will avoid them when anything else will work, but right now, I just don’t seem to be able to maintain that attitude. 

Whatever eases the way, with consideration of the health of my liver and kidneys.

Monday again

It's been great having a long weekend. I slept in for the last 2 days, until 10, just like old times. Now I'm getting ready for bed and the return to the work week, and trying not to become stressed about the upcoming infusion. I guess it's time to strap on the IPod again and listen to some of the guided imagery and/or affirmations that help me deal with this.

Not much to report; I will try to write at  more length tomorrow. I've had a real holiday weekend-ate too much, slept a lot, unscheduled time, socializing-it's been very restorative. I'm tired today, but not exhausted, and ready to crank it up tomorrow. Gotta remember to take that iron in the morning. I can really feel the difference when I forget it, as I did today.

Independence Day Eve

I shopped til I dropped today. Had planned to stop by a party at the home of a friend from work, and then discovered that I don't have her phone number or address, so it's another evening hanging out at the house. That's fine; I'll spend some time on the back patio again, and will enjoy Dave's company, and watch the prologue of the Tour de France. There are several fireworks shows planned for this evening anyway, and Xena will be nervous. It's good to be here.

I made a holiday meal of grass fed hamburgers and hot dogs. I am still a bottomless pit food wise, and trying to avoid eating a large amount of meat however organic and healthfully raised, and I'm still trying to keep sugar under control and at a minimum. But I've slacked off on some of the nutritional stringency because it can make staying adequately nourished a chore, and anxiety-producing. Finding balance in all things, as I am striving to do, I choose to give myself permission to eat what I crave, although I know there are many friends of mine who will fear my doom  because of it. I'm more concerned about the amount of bread I ate today, in the form of a pumpernickel bagel, and whole wheat hot dog and hamburger buns. That breaks down to simple sugar, and I consider that more risky  than eating organic, grass-fed beef, particularly while anemic. It was a rare day for me. I pushed the boat out with a treat (the bagel), something I seem to be doing about twice a month. I suspect the benefits of my usual diet and avoidance of spiking my insulin levels will outweigh the detriment of the occasional day when I eat cake. Oh yeah...I did that 3 days ago...guess I better buckle down.

I have head stubble still, I thought it would all fall out but it so far is stubbornly hanging in and growing, albeit at a glacial pace. I still have pubic hair, though far less than pre-chemo, and lip fuzz and sparser-than-normal eyebrows. I have expected every hair on my body to go, and there are still plenty of time and treatments for that to happen, but so far no. Interesting. I sure don't have to shave my legs as often as I used to. I'm having headaches fairly frequently lately and they are a more challenging symptom than the hairlessness. I don't really think they are chemo related, but more likely a sinus irritation, or resulting from a lack of caffeine.

The porch

My diagnosis came the day after my 25th wedding anniversary. Already,due to my surgery earlier in the year, we had postponed until 2011 the big pleasure trip to Italy we had planned in celebration of our silver jubilee. That trip had been postponed originally back in '05, planned to celebrate the 20th, when Dave had been first on the road all summer with a year of major festival tours, and then diagnosed with his lung cancer in November. One of these days we'll get to Europe. In the meantime, I got a screen porch.

My biochemistry makes me a mosquito treat; if you wish to avoid being bitten, just bring me along with you on an outdoor outing and you'll be safe; they will flock to me. My sister says it's the same with her; must be one of those wonderful genetic traits we've inherited, perhaps it goes along with the family tendency toward cancer? So the money I'm not spending on travel this summer, I decided to spend on a home upgrade I've craved for the entire 12 years we've lived in this house, and we had the covered back patio screened in.

It's not quite finished- there is a little area to the side that is being graveled over, an area where grass refuses to grow anyway, and I'm tired of the mud. We'll be able to have a grill there, and a flower-box border. I am sitting on the porch now, still in need of a rug and furniture, looking out on my green yard and listening to the tree frogs and cicadas, the sirens and other city sounds muffled compared to the volume on the open front porch. Nashville has become a big city, and it's loud at night here in the inner suburbs. If I can't have Florence, I've got at least this retreat. I bless my sweet husband for going along with my scheme, supporting me in this as he has in every way during this wild year.

Yesterday I heard about a woman who is going through cancer treatment, sick as the proverbial dog, with a husband who is having anger management issues, putting his fist through a wall next to her head during an argument, with his mother staying to "help" and limiting the patient's access to the car, both of them telling the woman what a selfish person she is. It's second hand, of course, every story has more than one side, but I couldn't help thinking how lucky I am. This woman had to resort to a professional for comfort, she did not have a friend or living family member to call. I am so blessed with my support system. Family, friends, professionals-all on my side, helping to relieve my stresses rather than add to them, making me feel the love, the "good vibrations". It's critical to a patient's survival potential, I'm positive, to have those support systems intact, the stressors under control.

I know, as Grace pointed out today, that a large part of the reason that I've had such a positive experience of chemotherapy is that I was in excellent health in all ways aside from the tumor before I began treatment. Not the most tip top physically fit, slightly flabby, but no major health issues, and very well nourished. But I'm sure there is more involved with my success than just that, and that along with my efforts to incorporate esoteric arts like yoga and tai chi, meditation, guided imagery, massage, laughter, rest, light exercise and continued nutritional focus, my support team has helped me in an immeasurable way to have this not so very bad time. Every good day is a good day; today is one of those.

I've been asked a couple of questions lately that I don't know how to answer: how do they know that the chemo is working? Is it based on blood markers? Is it just the lack of finding any other tumors through the regular screenings that I will continue to have? Is a PET scan recommended at some point? Guess I'll have to ask that one. The other question was when does my hair start to grow back-at the end of the AC treatments, or not until all the treatments, the 12 weekly Taxol sessions, are over. I suspect the later, but I don't think I've asked that one either. It doesn't matter really. It's interesting to be bald. I look forward to having hair again, but for now, bald is easy.
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