Symptom Log 9/29/10

Neuropathy: right thumbnail painful, shooting pain in both feet, pins and needles left hand and forearm. Sensations of a thread tied around last phylanx of right great toe. Symptoms have intensified over course of day. Alleviated but not eliminated by activity.
Sweats: several times, also overly cold in airconditioning
Appetite: increased hunger
Visual Analog Scale (VAS) of pain: overall, about 4/10 for the day, averaging.

Results of symptoms: difficulty applying usual amount of pressure during performance of manual therapy today.  Alternate sweats and chills. Melancholy.

Surprises

that white stuff is hair-yahoo!

Somehow today weepy-ness is going around; I've been feeling alternately aggravated, angry and weepy myself, and my nurse Jenny tells me that I'm not the only patient she's dealt with today who has expressed similar feelings. I know for me it has something to do with my pins-and-needles/burning feet, but there's something else going on too. Partly it's in response to gripping the reality that treatment is almost at an end, and the decision about the next step needs to be made. One moment I think I'm clear on that, the next, not so much. Surprising to feel so much emotion today, when yesterday it seemed so matter of fact.

can you see my short short white hair? feels great!

Another surprise today is the news about the 24 hour urine collection from yesterday-it was completely for naught. I held my pee and made sure that I had my discrete Mylar freezer bag with me whenever I ran to the bathroom at work yesterday, and had the collection container in my fridge overnight (yuck), worrying about the chance that it could leak, then carried the heavy thing in to work today. Surprise! I called Glenda to ask where to leave it and she told me that they are no longer collecting for this last Avastin cycle. Grrr...poor Dr. V came by to let me know this in person, but just as I was ranting to my coworkers at the clinic about my long-sufferings.  (I think she overheard me; at least I got to tell her to her face.) She was very apologetic, overly so actually because I wasn't really mad, just frustrated. But at least I won't have to do that again, nor wear the 24 hour BP monitor, nor the little finger-cuffs. But I don't really know what information is going to be gleaned from my earlier piss-offerings anyway, as I was "unblinded" today for the study I believe that monitoring was connected with, the Avastin study, I was assigned to "arm A", the placebo group. I have not received Avastin anyway. And that's probably good, as my oncologist said that among her patients who she knows have received it, there seems to be more toxicity, more neuropathy and poorer overall experience during chemo. No telling for now how their outcomes will be. I'm okay with not having received the drug; I don't believe I needed it anyway. One less bag of saline to sit through while it infuses.

Quite a few patients and coworkers surprised me recently with gifts-a hand-made pink fuzzy neck scarf, a T-shirt with the logo "Tough enough to wear pink", needlework, topical analgesics, and in the past massages, reiki sessions, meals, the juicer...always a treat and a pleasant surprise. I'm learning to accept gifts, hopefully graciously. I hope I give adequate thanks; I appreciate the care beyond telling.

Vanderbilt in its wisdom moved the breast cancer patients to the new medical center off campus at 100 Oaks, so very close to my house, for infusion and doctor visits as well. Last week, the initial visit was a nightmare-2 hours behind schedule with an evacuation of the building in the form of a fire drill to boot. Today, all ran smoothly and on time. I had bitched loudly about the chaos last week to the front desk staff at my clinic this morning; I am suitably humbled by the antithetical experience today. It was as smooth and stress free as any chemotherapy session can be. They even had the snacks being passed around which becomes important when you are stuck there for hours. I don't eat any of that stuff, always bring a lunch box with sandwiches on sprouted wheat or rye bread, hummus, carrots, apples, stuff like that. But Dave had some baked Lays and I drank my green tea and ate my sandwich and wished they had bananas in that basket.

It's important that I bring that lunch box-almost skipped it this morning and am glad I overcame the urge-because something about the infusion makes me insanely hungry. We went out to get Vietnamese afterward, and I ordered 2 entrees! The waiter looked at me like I was crazy (I was) and I assured him that I intended to take half home for lunch tomorrow, and indeed I did that, but I couldn't stop myself from ordering both the hot and cold dishes that I craved. I'm hungry again. It's the Decadron, I'm sure of it. I'll keep drinking tea and I'll have some fruit, but I really want to try to avoid gaining any more weight. There are no gifts of cancer in my world, but slimming down was one of the okay things that happened post diagnosis; I'd like to maintain the slimmer me, all the better to show off the new boobs when they are all done.

I think I'm going to start a daily symptom log (that should be good and boring for any readers!) so that I can keep track of the severity of the neuropathy and have a reference to help me decide on continuing or not with the Taxol. I've had 10 treatments; going back to my priorities, I have to decide whether I can tolerate these symptoms and the possibility that they could be permanent. I am going to take it day by day. Today was a melancholy day, but a good one. Another good day.

Priorities

We've all got our priorities; I think topping my list is food. I get home from work on my 2 long days, currently Monday and Tuesday, at 7-ish and spend the next hour or so preparing dinner. I've got organic free range beef hot dogs in the fridge and could slap those together in 2 minutes, but I don't want to eat meat very often, and I spend the time to make a pasta dish that encorporates veggies-brocoli, mushrooms, onions-along with herbs and spices-turmeric, watercress, parsley. And a fresh cole slaw based on a recipe from "One Bite at a Time", Rebecca Katz's brilliant cookbook. I feel drawn to devoting the time to eating this way and because of that, other activities suffer. One of my long term goals is to gain some sort of certification in nutrition so that I can legitimately pass along some of the information I've gleaned that I feel contributes to my success during treatment and that I find helps me manage stress and pain, etc, in general. That goal, however, is not topping my list of priorities. Tonight, I manage to take the dog for a brisk walk around the block, but not to do a meditation or yoga practice. I'm not exercising to the point of a full sweat very often, and I know that as much as my diet, the exercise is critical to long term health. So I must constantly re-prioritize. Writing this blog was high enough on this evening's list for it to get done. Yay.

Tomorrow I have a big time at the old infusion center scheduled. I see my oncologist, and turn in the latest 24 hour urine collection, an icky duty to one of the various studies in which I've taken part, and also see the georgous doctor doing this research who will hook up little blood pressure monitors to my fingers and strap a BP cuff on me that I will then wear for 24 hours. My desire to do something for future cancer patient's through this experience sometimes comes back to bite my ass as I try to deal with remembering to pee in the cup for 24 hours and then to deal with a full day of half-hourly BP monitoring. The things we do for love.

But I'm that much closer to done with the whole deal, and I think this will be the last time for the 24 hour surveillances. And at this point, I'm wondering if I'll even make it to the end of the 12 sessions of chemo as the neuropathy, so well controlled for the past several weeks, has really increased over the last few days. It's still not constant, thank goodness, but reasonably consistant. Shooting pains in my feet, occasional numbness of my feet, left hand kind of burning. Again, intermittently, but even so, no sir, I don't like it. 

Well, it's time for bed. I went in to work very early today for a manditory staff meeting. I now know that my employer values my department very much, as it fits their mission of promoting wellness. How that will manifest in future changes to our environment and in opportunities for advancement of knowlege and practice is still to be learned. One step at a time. One day, one bite. Every good day is a good day; today was one of those.

Not in the mood

It's funny how I write these entries mentally constantly, but when I try to sit down and actually commit them to electronic media, I tend to become distracted. I'm just not in the mood lately.

I have a nice covering of short, fine, straight, white hair. I have a few eyelashes and eyebrows growing back in. I have a big glutamine habit and a big appetite, and a belly that feels icky when it's empty. I have the curse of the cancer patient, where every ache and pain, every new symptom or little bump that is probably a bug bite leads to concern and a list of items to tell the doctor about and make her check out when I see her on Wednesday. What does one do when the treatment ends and doctor visits are no longer scheduled on a regular basis? It is daunting to return to confidence, to develop a new normal.

I have a million things to say and nothing of interest to anyone but me, and no time to say it anyway. It's time to go to bed. A beautiful weekend done, time to get ready to return to work. Time goes way too fast.

Taxol #9 infusing; 3 to go

Today has been rough. Vanderbilt has moved the breast cancer chemo operations out to the satellite facility, One Hundred Oaks. It's the site that had once been proposed to become home for my clinic, the Dayani Center, but it now looks as if we will never move to this ideal location. Instead I am to come here for my check ups, and for these last few chemo sessions. It's tantalizing in it's proximity to home, aggravating today as the operations here are not yet smooth and the wait was staggering. Just to top it all off, there was a false-alarm fire drill that caused an evacuation of the building and slowed things down further. I've got cramps (and I'm sure that's not good as I have no ovaries) and I got nauseous and a bit dizzy walking out of the building in the throng of the evacuation into the heat outside with my port accessed and the tubing hanging out of my shirt.

We finally got into an infusion room - a windowless cubicle - I usually request a window and mostly have gotten one, but the last couple of weeks, not. Then we had some nurse or tech come in and get some papers without even looking at me and Dave finally hit the ceiling. The stress pushed my buttons and I finally busted out in tears and just couldn't stop crying for a while. I feel fat and ugly and frustrated. I've stopped wearing a wig as they were irritating my scalp and switched to hats; maybe I should start wigging out again. I don't think that would help the emotionality, and I don't relish a return to wig-dom. I want my hair back. I want eyelashes-is that so much to ask?

I should probably try to get a massage this weekend. It seems to make me more tolerant, more patient, less cranky.

I re-met with Dr. W this past Monday; he was the second opinion surgeon that I went to see before my initial breast surgery who gave me some very good information about the value (or lack of it) of axillary resection. He took my phone calls on his cell phone and spoke with me at length when I had questions and helped me feel confident and that my opinions and my individuality were being honored. I wanted his input on the mastectomy question, and he supported the option for me. He didn't know why the radiation oncologist had pushed me so hard toward aggressive radiation, but he felt that mastectomy without radiation was a reasonable choice for me. It was helpful to hear from him; now the issue is whether he or K should do the job. Dr. W sure is inspiring, kind and handsome (and K is sweet and cute, too). It's tempting to go off campus for this one, but I think I'll probably be sorry in the long run if I do; more hassle with the expansions, more expense. We'll see what I think of his plastic surgeon and time frame. I am considering it, though.

In the world of irony, I attempted to purchase an electric wheatgrass juicer off of Craigslist, and hearing my situation, the seller, a wholesaler, generously offered it to me as a gift. I was thrilled-it's brand new in the box-but got it home, read the assembly instructions, set it up, plugged it in and a resounding silence responded to the on-switch. Nothing happened. I took it apart and put it back together about 10 times-zilch. I called the manufacturer and asked if there was a trouble shoot, they said no - send it in and they will repair or replace. I sheepishly texted the gift giver and he said he'd swap it out. I hope the next one will crank up. Otherwise, it's off the manufacturer.  Nothing is easy!

Saturday the 9th of October I will walk in the Race for the Cure. I have a hard time with big crowds, but will have a small group of friends walking with me. Heck, I could walk home from where the race takes place; if I hate it, I'll peel off and walk the dog away from the hubbub. I'm looking forward to it as a celebration of the last weekend in between treatments. Last one, Wednesday the 13th, I'm thinking about bringing a cake in to work. Last time! I can see the finish line, finally. My Race for the Cure will be a personal victory lap.

The Challenge of Writing

There is something about the self-orientation of this writing that has been off-putting to me this past couple of weeks. I've been tired and sick of talking about myself and uncomfortable about myself at parties. feels like I'm whining most of the time. and I'm slow at conversation, kind of dull. I want to maintain the social ramble, but this weekend, I was invited to 4 or 5 events tonight and had all kinds of other opportunities, and just haven't been able to make a commitment to any of it. We did go to a nice party tonight, but I ran out of steam quickly. I'm enjoying my porch for the moment, but getting ready to go in and unwind. I'm trying to work my way back into regular writing but like the difficulty I'm having with party-talk, the thoughts don't flow naturally when I'm writing recently, and my already taxed energy sags further with the attempts to organize thoughts into something worth reading.

Having a soft duck-down on my head now - straight and gray - I finally feel somehow okay about the practically-bald look. I just wore a hat today, and I think I may start going in to work that way too. The wigs have been fun, and rediscovering makeup has been a good thing, I think, but wearing a wig all day one winds up with an elastic indentation like you get from socks that are too tight around the top and the constant dull headache that goes along with that has gotten to be oppressive. Tonight I wore a  wore a charming straw hat that I've had for years but just started wearing, along with a little vintage brown-and-white polka-dot dress; one of the women at the party told me I looked like a character out of a classic movie. I was flattered; I try to enjoy the theatricality of hair choices and look at the clothing as costuming, to have fun with it, but it often feels like I'm all alone in my own little performance. It was nice to know that someone noticed; nice to feel like I looked okay, because it still feels odd to be the almost-bald one.

A friend who went through the experience 9 years ago came over and showed me her breasts today. Now there's another thing I never thought I'd do...look at and feel a friends chest as a shopping activity. But I never thought I'd be doing bodywork for breast cancer patients in a physical therapy setting, massaging breast scars and mobilizing implants with my hands all over a patient's breasts, yet I've been doing that for over a year now. Life is change and full of surprises. I wonder what other surprises are in store. Anyway, those virtual tatas that I viewed today were encouraging. The idea of that surgery at this point is not at all frightening, at least not any more than any surgery, as it all is sobering, serious and potentially dangerous, but I look back now and wonder why, once I initially heard the diagnosis, I didn't feel then as I do now-"just get them off of me".

I think I need to try to start meditating again. Hopefully I will do some tomorrow.

Taxol #8

written on Wednesday in the infusion room:

Counting down helps. 4 more to go. Today I am doing alright except for the sinus infection that started about a week ago. Started out with my usual fall allergies and some sneezing and coughing and advanced to an infection. Dr. A doesn't want to put me on antibiotics though, and for this I'm grateful. My white counts are only slightly low, and I'm only a little anemic so I'm not completely exhausted and I'm not absolutely miserable. Just kind of run down and slow.

I have a tumor on my left thumb. It's probably benign, a neuroma which arose for some unknown reason, associated with my Taxol-induced neuropathy, I think.

Monday between Taxol 7 & 8

Well heck it's hard to keep up with the writing I want to do! In my thoughts, I'm writing all the time, seeing things I want to talk about and trying to remember ideas that come through. I compose paragraphs and rewrite them mentally on my way to work, while making dinner or walking the dog, but that doesn't get them online. Gotta sit down and do it.

I've made some progress with my decision process; I'm sure at this point that, unless I get some unexpected input from one of the sources I'm consulting for further opinions, I'm going to go with the bilateral mastectomy after I finish chemo and skip radiation. I'm more comfortable with that somehow. Trying to look on the bright side and consider it like an elective cosmetic surgery-I always wanted a somewhat smaller set. Either choice has inherent challenges, but that's the one that feels right to me based on the information I have so far.

I have a sinus infection that is just wearing me out. I thought I'd want to do a long entry here, but can barely keep my eyes open. Nighty night.

Taxol #7 - counting down to the end

I'm in the chemo chair again receiving Taxol #7. I pray that my fingers and toes remain as minimally effected by the neurotoxin as they have so far, but I have sworn that I will discontinue treatment if they worsen, and I will. So far, it is tolerable and minimal. I'd like to get the treatment in, but will opt for quality of life over an unknown longevity benefit.

I had a wonderful weekend of picking and grinning with Dave and then just plain screwing around, going to thrift shops and used book/record stores as is our wont. We were on the side of town where my favorite, rarely visited Vietnamese restaurant is located, and had a cheap and terrific meal there. The way I have gained weight since starting Taxol, one would hardly  believe that I'm a chemo patient. I kind of wish my appetite weren't so good. But I would not trade for the nausea that I experienced early in treatment. I'll find a way to pare down again, as I always have, when this adventure is over. I'm not exactly two ton Tessie, but I did enjoy my extra-lean-ness for the few months that I experienced it.

I met with Dr. Kelley yesterday to discuss the thinking behind his plan to wait until next year to do another MRI. He tells me that some breast abnormalities show better on mammogram, and that it is also easy to get false positive reads so soon after surgery with the MRIs. The point may be moot anyway as I also discussed with him changing plans and going for the bilateral mastectomy. Won't need no MRIs if I shed these babies! Dr. K says that the stats for reduced rate of local recurrence and of secondary breast cancers or a primary in the contralateral breast are actually better than those with lumpectomy followed by radiation (which only addresses the effected breast anyway), and in my book, significantly so, and in the Doc's opinion, a bilateral mastectomy is a very reasonable plan to avoid radiation and minimize my future risk. I'm not making a decision yet, but right now, I feel that I am strongly leaning in that direction. I'm such a no-cut kinda girl that contemplating cosmetic surgery is odd for me-thinking about the pain of getting there being worth the good boobs for life and no more bra wearing.  But one must focus on the up side when faced with the horrific realities of life, and definitely up for me is the option to reduce down to a C cup, to go braless, to stop the biannual anxiety fest that accompanies visits to the breast center. I'd still be monitored, but with less trepidation.

So the numbers I have so far are:
the risk of local recurrence with lumpectomy/radiation-10-15%
the risk of local recurrence with mastectomy: 3-5%.

I didn't write the following stats down, but per my memory, my lifetime risk of another breast cancer was something like 30% which goes down to about 1-3% on the right with the preventative mastectomy. As I've already had a diagnosis of atypical lobular hyperplasia in the right breast (the ductal carcinoma for which I'm being treated was in the left), my chances of a cancer there are higher and would be 97-99% eliminated by the mastectomy. The choice at this moment is looking pretty clear; I hate to think of altering my body like that, and to look ahead at the dangers of surgery in general, the pain and challenge of rehabilitation and the altered body image, lack of nipples (not so much for looks but for sensation), etc, but I am also starting to experience anxiety regarding follow up to my diagnosed tumor; that anticipatory stress would be lessened by the additional surgery.

No amount of surgery can totally prevent another cancer experience, however. My best safeguard against that is prevention of the nutritional/exercise/spiritual peace nature, and I must practice that either way, with or without additional surgery. And as radiation carries risks of its own, such as minor heart and lung scarring, tissue loss of elasticity, small potential of secondary cancers such as leukemia, the surgery offers a way to avoid dealing with these detractors.

Still, the prospect of having a permanently numb chest freaks me out considerably, and I am not taking this decision lightly. It is monumental, and I believe I'm giving it the respect it commands. But the choice is mine to make, and doing the research myself to make it as an informed person helps me feel "empowered", and therefore better about the experience. I may choose poorly, or I may fail in my attempts to implement lifestyle changes that will keep me safe from future grave illness, but I will have taken the reins in my own hands, and that feels more right to me than simply following a doctor's lead down a path with which he/she is familiar.

So 5 more infusions to go, assuming I can tolerate them. I hope so. And I hope that I'll reach a decision soon and be at peace with it. I felt this gut-wrenched when deciding about the ooferectomy, and then eventually reached a choice that felt right and with which I was comfortable. I assume I'll be able to get there again with this new choice.  

Sunday Funday

written but not posted on Sunday, Sept. 5th. We played at the Country Music Hall of Fame that afternoon-loads of fun!

Anyone know anything about Anutra (fancy chia seeds) or Graviola? I hear about a new miracle nutritional suppliment or botanical cure every day and am trying to avoid going broke trying each and every one of them. I have been using chia seeds fairly regularly, but don't notice anything spectacular from their use. I still use ground flax seeds as well. I believe in the nutritional power of nuts and seeds, and I guess that some chia seeds might be more loaded with good stuff than others, but you never know and I hate to be a sucker. What about Beta Glucan? Any thoughts on that? I'm already taking a massive handful of pills everyday; I want to choose wisely if I'm going to add anything to the melange.

Saturday Space Case

The last couple of days, I've felt so much better, so much more normal, than on so many previous Thursday/Fridays, that I wanted to celebrate, especially with the weather having finally turned to perfect early fall balminess. But today, I'm walking around like some kind of rag doll; I feel fine, but lazy, spaced out. I've been taking it easy. Poor Xena, she was all pumped up for the farmers market this morning, but I really didn't have the energy to go. We took a brief drive and then came home and sat on the back porch for a couple of hours.

I think my generally improved sense of well being is due to reduced ancillary drugs; I've had about 1/3 of the weekly steroid dose and am down to just a regular antihistamine. It's much easier for me to tolerate these dosages, and the Taxol now doesn't seem to be messing with me much. I still have the mild neuropathy, but I'm not suffering much. It's odd to think that my body is doing better with that strong drug than it does with the steroids and antihistamines, but so it seems. I also had an acupuncture session on Thursday afternoon, and an energy healing session on Friday. I'm covering all of my bases. My folks have a friend who is a 30 year survivor, and when I asked her for her philosophy regarding successful triumph over cancer and told her about the pressure I had been getting from some of my friends to avoid alopathic treatment, she said, "No, you do everything...chemo, radiation, alternative and complimentary medicine, shamen and energy healers and massages and saunas and nutrition and everything". She told me that the secret to her success was changing her lifestyle to include organic eating and meditation but she certainly did all the traditional western medical treatment that was recommended to her as well. She's here to tell the tale...very inspiring.

This evening Dave and I have to practice up for a performance/lecture at the Country Music Hall of Fame tomorrow afternoon. I'm looking forward to it as a chance to play and use my voice a bit, but hope to shake this lassitude and get into the picking a bit. So glad it's a long holiday weekend.

In the chemo chair again...

Taxol #6 today, with Claritin and decreased Decadron, hurrah. Waiting for the Taxol to start being infused; the lower dose of Decadron is well over with and has been for about 20 minutes. It's so busy here today that I hate to hit the nurse button and bug Jenny as I'm sure she has a long list of patients requiring her attention, and I frankly don't even know if my stuff is up here from the pharmacy yet.  I have been fighting depression these last couple of weeks; it's a darned long haul with this chemo protocol, and I'm just tired of it, and not yet seeing the destination on the horizon. I'm eager to be viewing the finish line in the rear view mirror, rolling down the road on new adventures with lots of stories to tell about my trip through this profound but unwelcome experience. This infusion marks the halfway point of Taxol...I think this will help me emotionally, as I start to count down to the last.

This wig was lent to me by Hilary's neighbor and I'm so grateful to have it to wear right now. It's been fun to try different hairdo's with the 2 straight wigs and to have the "underhair" made of my own to wear from time to time, but this little short curly wig does not have the effect of stopping me in my tracks whenever I catch a glimpse of myself; I look like me with a short cut. The straight hair has been fun, but when I look at photos of me with it, or look in the mirror, I'm confronted with a stranger.  I'm ready for that to end. And this wig is also human hair, and therefore much less itchy and more comfortable than the 2 synthetic ones. I was lent a couple of others as well and will surely wear them at some point because I'm still enjoying the theatricality of the whole wig thing, and because it will still be quite a while until I'm fully furred on top enough to go wigless, but I'm going to be very happy to stick with this look most of the time while I'm waiting the end of the "baby bird" look.

There is a pompous ass in the next cubicle who loves to hear himself talk, speaking loudly so that we cannot help but be treated to his boring story of his wonderful life; I wish he would shut up. It's a "private" room here, meaning that it has its own 3 walls and curtain, but it is not secluded audio wise and between the overheard conversations, TVs and the beeping IVs, it's annoyingly difficult to listen to one's inner voice or concentrate on studying, writing or whatever. See, I'm truly cranky...but also grateful that the chemo has been downgraded to a lower dose of drugs all around. I'm doing better with less.

I have the  weirdest thing going on with my left thumb...there is a little knot on the side facing the index finger, about half an inch below the 1st joint. It hurts or causes a numb feeling around it when palpated, and the doctor says that it feels like a fluid filled cyst. She ordered an ultrasound of it but they can't get me in to have the imaging done until next week. Of course my concern was that it might indicate a metastasis, but she said that it is not, it doesn't feel like a malignancy and it is not an area that mets show up in. It seems to have started concurrently with that 3rd Taxol treatment, and messing with it recreates some of those neuropathic symptoms, so I don't know if it is a separate issue or a side effect of treatment. Dr. A said she'd never seen anything like it before. So far, it's not debilitating. I don't intend to let it become so.

I got an email from an old friend this week that let me know he is suffering from a neurological disorder that makes him unable to walk normally, and that it is associated with a cancer for which he is still deciding on a treatment plan. I know he's scared, of course, and I wish I could do something for him. I feel so helpless to make a difference for others although I'm pretty good at feeling powerful in my own care and decision-making. I am daily astounded at the number of personal friends as well as famous personalities that I hear of dealing with their own diagnoses of the big C-how odd that this disease is so prevalent that living with it is the topic of a pop TV series. Living with it, okay, I can accept that...dying with it is not something I can consider calmly, for myself or anyone else. We all gotta go, sometime, somehow, but not this way...not now...

I want to go back to focusing on the good, every good day is a good day. Today is a good day. A little blue but good. That's the thing for me, be present with what is reality for me this day, at this moment.  A break in the heat, a blue sky, another chemo down...life is good. Shrimp for dinner.