Sunday evening on the porch

Dave starts back to school tomorrow, this time online. I know he's nervous about it as he is not as computer savy as I am, and I'm no tech nerd. But we got his old laptop updated and hooked up to a wireless keyboard and mouse and attached to a large external screen so at least it should be easy to see.

The weather has calmed down, too, and the evening is cool though damp. It's a fine time to be sitting out on the porch, and I'm getting my patio furniture slowly fixed up and cleaned up and ready for some serious hanging out. It makes me happy.

Last night was a lovely evening too, and I spent it delightfully with friends, first having a drink with the girls from the game group, a treat from Karen which I only got to participate in partially because I was previously committed to Hilary's birthday party. I used to have frequent nights of multiple of invitations, with the only answer to party-hop or miss out, but lately this is very rare. The game group went on to dinner and I went to Hilary's where I always have a wonderful time-she knows the most interesting people. A jam session in the shed showed off Hilary's son Forest's talent on the drums, and later on, Cliff had an acoustic guitar and sat playing standards on the patio enticing me to sing for an hour before I hit a wall and could no longer keep my eyes open. My voice is out of shape, as is the rest of me, but it is working and I feel confident that I could achieve vocal fitness with a doable amount of  effort. It felt amazingly good to sing, and made me remember why I want to find an outlet. I've been invited to join the community choir and I want to do it; I have to talk to Dave about the Monday night rehearsals that will take place every week starting after Labor day through December. Unless I have further surgery, I should be able to do it, and I think it will be very good for me.

It was a good spirit-lifter too as I have had a hard time the last couple of weeks fighting depression. All the several questionnaires that I filled out in the first couple of months of treatment got a very positive response from me, while did not yet feel worn down, still hopeful and positive about my outcome and my looks, my sex appeal, etc. Those questionnaires should be required later on in treatment, when the weekly hits start to seem to go on forever and the continual steroids start to mess with one's mind. I'm hopeful that my dose of these will be reduced this next treatment, as my antihistamine was this last time. I feel so much better this past 2 days, but Friday was rough, and Thursday I snapped at a couple of folks who did not deserve it. A massage Friday afternoon was a welcome help, and I slept for 12 hours or so afterward.

Went to the flea market today and the farmer's market yesterday morning. I rarely go to the mall, but the joys of this kind of shopping, flea and farmers markets, are not lost on me. I love to see what is in any individual stall, to squeeze and sniff fresh produce, to find a rare bargain from an estate or antique vendor. The latest fashion wear, not so much.

So it's bedtime again, and then off to work again tomorrow. Weekends are never long enough.

During Taxol #5

Adie Grey coming to you today from the infusion room, reclined and awake. Hooray, they gave me Claritin today instead of Benedryl! I'm a bit sleepy, but I don't feel as if I've been hit in the head with a 2x4. Sorry not to get my nap as I'm not really sleeping enough lately, but I'm glad to get to write.

Today I was assigned a room with a bed rather than recliner chair, and the nurse of my request. Nearly all of the nurses here have been fantastic, but I feel particularly attached to a couple of them. Jenny, who is working with me today, also worked with Dave 5 years ago during the treatments he received here at Vanderbilt post lung cancer surgery. He had his initial chemotherapy and radiation therapy at a different facility, and that is part of another long story I will not tell right now. But we liked Jenny and remembered her, and I was glad to have the chance to reconnect with her, although I wish it could've been at a party or something. It's comforting to have her taking care of me though.

I asked that the Decadron be reduced and Glenda said she thought they could halve it starting next week. I think that may help with the blues that have been hitting on the weekends, and maybe help slow the weight gain I've been battling. Weird how some folks waste away during chemo and others bulk up.  I'll miss the King Kong Thursdays though; I like having a day I can count on to be feeling great and energetic.  I'd rather it came from clean living and good health than from drugs.

Trish had a great idea, to compile a list of things one can do while receiving a chemo infusion. Today I have blogged, spoken with my parents on the phone, checked my blood work online (improving!), and visited with my husband. I've seen people kniting, playing sudoku, reading, working jigsaw puzzles, etc. I wish I could receive a pedicure while here-I need one desperately but am leery of the very kind and inexpensive folks I have gone to in the past with our language barriers and my hygienic hyper-vigilance. I called the program director here to inquire if anyone offers that service here in the infusion center-I would think it could be a goldmine-but she informed me that this service is not available. I would so pay for someone to come and give me a massage or clean up my toe nails! I'll keep looking for someone to help with this in the community, but it would be a time saver to be able to address it while dealing with the lost hours of the 7 more treatments I'm scheduled to receive.

Monday Monday

A busy day at the office, but not too crazy. I spent an hour and a half in the pool with aquatic patients-that was quite pleasant, but it's a long time for me to stay in the water. Even though the weather outside is hot, the pool is indoors and after an hour, even though the water is relatively warm, I start to chill. I have a wet suit; I must use it! Maybe if I were swimming laps instead of standing and supervising rehabilitory exercises, I would maintain my warmth. But I was cold and tired when I got out today-luckily my next patient cancelled and I had a chance to regroup.

I called Dr. W's office and made an appointment for the middle of September-the first he had available. Okay, I could call him, but I think I'll wait. I'll call Dr. K again, my current doctor, and see about that appointment I was supposed to make with him. I don't suspect that anyone is going to suggest that I skip the radiation experience; it's that accepted protocol as far as I can tell. But I want statistics. I'll make my choices.

Today is my Dad's birthday, and I got the present; he and Mom have agreed to come to visit in October, which is fantastic as I just can't quite get a handle on when I will feel able to travel again myself. I got excited about a Thanksgiving trip, then looked at the reality of doing something that energy draining while I'm going through radiation, or even possibly dealing with another surgery, so I can't really face a cross country trip until I'm done with this treatment journey. I'm so excited though; it will be great to have a visit-I don't get a lot of visitors these days. I will make up for lost travel time next year.

Where to start....

Today was a funny day; despite feeling well and productive yesterday, I just found myself in a state of agitation around midday. I keep thinking that I want to write about it,  but actually have fallen into a reverie of TV watching and I just don't feel like doing anything else. I still think it's steroids messing with me. I'm more tired than I realize.

The neuropathy is for now (knock on wood) under control, diminished since the last infusion, very minimal. But there is a nodule on the left thumb that feels like a little neuroma or something. I will point it out to Glenda at my appointment on Wednesday. I'm also going to call Dr. W, with whom I consulted before my initial surgery and arrange another office visit with him. I want to know how often he feels I should be followed and whether he thinks an MRI in the near future is appropriate. And I want to know if in his opinion a mastectomy might be a realistic alternative to radiation.

I've spoken to Dr. R about the radiation-he recommends a very aggressive approach with treatment to the supra-axillary and supra- and infra-clavicular nodes, also possibly sub-sternal. Dr. C stated that she would not recommend radiating the nodes due to the potential severity of side effects and inconclusive studies regarding the level of benefit. So if we were to choose not to radiate the lymph nodes, then, why not a mastectomy instead; that would answer the right-breast question, the potential for a primary cancer there, not just local recurrence. I didn't ask this question, as Sharon pointed out to me when she dropped by to visit yesterday. And I didn't ask Dr. C if she was stating the she would not do any lymph node radiation or only referring to axillary nodes. So many questions to ask, so much detail to remember to include in each query, even when taking notes during appointments, there is a huge amount to synthesize.

My surgeon Dr K's office never got back to me last week with a time for a consultation despite our conversation regarding this and I'm not sure whether I should call them again or wait a bit. His oncological group is moving their base of operations at the end of the month and getting appointments and answers is very tough right now, and it begins to feel like I may want to switch breast surgeons and have a primary provider for my cancer concerns be one who has given me his cell phone number. May I never abuse that privilege, and may I choose wisely.

Friday Night Blues

The dog likes a cave. She can feel the tension in the air, whether it's coming from storms in the distance or angst in the house, and she heads for her place in the corner behind the wing back chair. She curled up there now. Steroids are supposed to make one agitated, aren't they? I'm sure I've never had them in any quantity before all of this chemo began. I'm not so very tired physically despite inadequate sleep the last couple of nights, but I'm emotionally spent, cranky and blue. I guess I deserve to have a punky evening; I've stayed pretty positive and energetic throughout this experience; I'm due.

Is it at least half-over yet? If my calculations are correct, I'll have my last chemo infusion on October 13th, and will start radiation therapy on October 25th,  concluding on December 10th. Goodbye 2010. I started treatment in April with surgery; from a time-frame standpoint, I am just halfway. Okay, I guess I was about due for a pity party.

Alright, I'm done. That's enough self absorption.  Dave's making dinner and I'm just kicking back watching TV. Tonight I hope to get a bit caught up on sleep. The house is relatively clean, I've got the night to kick back. I'm sure there's a movie around here worth watching. Whatever.

I think I partly got a bit depressed today over my lost weight beginning to find its way home. I was happy about that part of the stressful onset of this experience and for a while it looked like I was going to keep that more svelte figure, but I was warned that chemo can really put the weight on, and so it seems. Funny, for many patients, it can work exactly in the opposite manner. And I do think that this is not the time to obsess over the waistline, but I was more comfortable at the smaller size. Calorie reduction is supposed one method of promoting longevity, too, and leanness is beneficial there too. Steroids, on the other hand, are supposed to help bulk up and increase appetite. It's a difficult balancing act, and I'm trying to be gentle with myself right now and to merely focus on eating well and exercising as I'm able. Can't have everything. At least I still have the clothes for both sizes!

The weather too is improved today and for the last few days. The air is dry enough to make it pleasant to sit outside. I plan to do some of that this weekend.

Day after Taxol #4

I feel great today, but that seems to be the pattern. The day after, the Decadron rules and I feel energetic and, at least today, pain free. I am hopeful that the reduced dosage will take care of the neuropathy problem as today it is nearly gone. Hope that is not also a function of the Decadron.

Tomorrow there is a team coming to clean the house, and I haven't had time to tidy up properly. I hope I can get it clean enough to be cleaned! I have to rush home from work to be here when they come as I just can't stand to have someone new come to clean without being able to direct. (I wish I had been here to direct when the neighborhood kid came to clean up in the back yard-it didn't quite turn out the way I had intended. Ah well...) The cleaning tomorrow is another "cancer perk", an organization called "Cleaning for a Reason" arranges four free housecleanings for women who are going through cancer treatment, they contract with cleaners all over the country to provide this service. I hope I like this company; the woman who had been coming every few weeks for the last couple of years has kind of dissappeared - her husband has been ill, they no longer have a phone and she hasn't called me. So I need this help but it is always uncomfortable for me to start with a new cleaner-it's an intimate relationship. There will be two people tomorrow, and it may be a different 2 every time. We'll see how it goes. I'm financially challenged right now since I've practically stopped doing massage and have had many cancer-related expenses, so the gift will be appreciated.

Gotta get to bed so I can get up early and do the tidy-up.

Taxol #4

Today was a crazy day, from the very start. Strong storms ripped through Nashville last night and this morning and the thunder and lightening kept Dave and the dog awake most of the night. I slept with wild dreams, but soundly. At one point I dreamt that I was taking a train trip that was a cancer patient perk of some kind, but that I had fallen asleep on the train and not awakened until I was in Austin, TX, meaning I'd missed Nashville (there is no passenger train service here in reality) and was going to miss my chemo infusion! In my dream I cried and asked if there was a train to Nashville leaving anytime soon, but was blown off by the porter who told me to read the difficult-to-decipher-quickly schedule myself as he did not have time to help (not the way I remember porters to behave in my experience), and as a result I watched the Nashville train roll away without me on it. Disturbing, frustrating, but not a scary dream. But man, I really don't need frustration in my sleep, I get plenty of it in day to day existence.

I told the oncologist today about my neuropathy, and she reduced my dose of Taxol by 20%. We are hoping that the trouble will not get worse so that I can complete my course of treatment. My oncologist told me that this usually doesn't occur until later in treatment, halfway or so, but another oncologist told me that it usually begins right away and was surprised that I had not experienced any after 3 treatments (it started the next day-power of suggestion?). Everything is such a gamble; I have to constantly weigh risk vs benefit, and to determine how far to go with treatment. I have a deep inner sense that I am now cancer free and will continue to live long and strong, but intellectually can't help returning to those statistics. I am acting from gut as well as from gathered information in my final decisions, and I know from living with Dave who constantly suffers from the neuropathy in his hands, and from my patients who suffer with it in their feet, with every step, that I am unwilling to knowingly poison my nerves for the sake of a maybe benefit that may be of no use to me at all. It's a guessing game. I'm moving my pieces on the board, and hoping to be canny enough to at least pull a draw.

So current symptoms: occasional mouth sores, mild neuropathy in hands and feet-particularly left hand, tender feet that blister easily, finger nails changing color with dark and/or yellowish areas, some muscle aches, mild weight gain, weird dreams, dry skin, bloody nasal discharge, homesickness - I think that's about it. Sounds like a litany, but it's really not that bad. If I can just keep that neuropathy under control, I can deal with all the rest of it. Fortunately, I believe my oncologist understands my concerns and is on my side, not pushing my decisions. I'm doing chemo because I want to do it, but at some point one says "I'm chemo'd" and that's it whether you make it through the entire protocol or not.

One of the wild occurrences this morning was in regard to my 24 hour urine collection the previous day; I went to get my big official medical plastic piss container out of the fridge to pour in the final deposit of liquid gold and discovered dampness all over the glass shelves. I freaked; figured I had urine all over the food and dishes there and began to frantically clean up when I discovered a broken bottle of Snapple had leaked it's contents everywhere. The pee was not the culprit. It still cost all of my get-ready time and I was nearly late for work when coupling that with the outrageous traffic, all of the students returning to college today and the results of the storms. The lab was backed up an hour-it was coo coo! Somehow, I managed to stay calm and now am enjoying this time to write and rest with my feet up. I was told it helps with the neuropathy. Ah... an excuse to lounge!

Days fly by

It's my goal to write daily, but so far, I'm not meeting it. Still, here I am...with trepidation over diminished sensation in my left hand, and some in my feet. Right hand has had a couple of twinges, but not the slightly Novocaine-like feeling in the left, particularly the thumb. It hurts too...hard to describe something that hurts and is numb at the same time, but that is the case...the pain is deep, dull and achy. Not intense, but concerning. I'm going to discuss this with the oncologist tomorrow. I'm not willing to sacrifice my hands to the chemo experiment - I may have had enough. Still gotta make it through the radiation without further nerve damage...this is my treatment, for my benefit, and I have to weigh my priorities as to what provides the best opportunity to achieve the quality of life that I'm after, not just the quantity. We'll see what I learn tomorrow.

Other than the neuropathy, I feel pretty good. I have some bloody nasal discharge and weird, vivid, gory dreams, but compared to the queasiness and lethargy of the adriamycin/cytoxin, I'm feeling much better. Enough so that I contemplate the possibility of getting to the west coast for Thanksgiving...just a thought, but it cheers me up. I don't know if the radiation schedule will allow it, but I will find out.

Sunday, muggy Sunday

This has been a nice long hot day during which I got a lot done, but not enough. It's always the way...days off are too short. Got to get back on the stick with preparing the '09 tax returns-the extension deadline is coming up. October 15th will be here before I know it. That will be good in as much as it will mean the end of chemo, but it would be bad to neglect this responsibility. It's just a matter of spending some time with Quicken to get the records ready for the CPA. Not a big deal, just gotta do it.

But today I went to the Y and did a half hour on the strider, took the dog for a walk, gave Dave a massage, did some shopping, made dinner, prepared a set list for our show on Sept. 5 at the Country Music Hall of Fame...it was a good busy day. Thought a lot about my plans for the future too. I realized that my status as a cancer survivor now is not that different than it was as a cancer avoider, except that when I am feeling anxious around the times of screenings from now on, I know how it feels to have a positive biopsy, to receive bad news. You live through it. It's scary, but it's always been scary. It was always a danger, there was always the possibility that I was going to hear a test result that I feared. It's unfortunate that 2010 has been a year that has been devoted to treatment and surgeries, and I intend to make 2011 a year of celebration and travel. I deserve it, and I'm not going to let fear clip my wings.

Thursday I met with the radiation Oncologist at St. Thomas hospital, and he made it clear to me that I will indeed be doing radiation after I finish chemo, which really does put a fork in any thoughts I may have had about a quick trip home after chemo-I will be immuno suppressed until it's time to start the next therapy regime, and there won't be time to take a long weekend during treatment. Unless I were to go for Thanksgiving...that could be a possibility. I'll have to figure out who is doing the treatment where and see what the thought is on that.

I did get an answer on the ALC and it's cool with Glutamine, so I ordered some last night. I did add ALA already and also upped my B6, and the neuropathy is nearly gone, just some slight diminished sensation on the posterior surface of my left thumb, and still some in the left shoulder back as well. Could be neck tension as much as anything else, really. Time for me to plan another massage for myself!

Saturday in the heat wave

written last night:
It's the oddest thing; even as I write this, I'm sort of attending a reunion in Los Angeles via Skype. The gathering is a bunch of folks who worked at a couple of restaurants that were kind of legendary in LA in the 70's & 80's, and all of the waiters and waitresses, bussers and hostesses had to audition to get the job. Mostly singers and musicians, but also jugglers, puppeteers, actors....all kinds of entertainers worked there. I was at one or the other of the restaurants for 7 years...hard to imagine now. It was a whole lot of fun. My current job is great, and I find it fun, but not like that!

So right now I'm eavesdropping visually as well as audibly, and it's going to be interesting to see if I even recognize anyone if and when anyone comes over to talk to me; furthermore, will anyone recognize me. The call caught me sitting on the couch with my hair off and I'm currently wearing a straight wig so I doubt anyone will know me as no one here in town recognizes me when first seeing me in this do.  I'm virtually attending through a laptop sitting on a table in this banquet room and have a very good line of sight at a lot of midsections. This was a great idea in theory, but in practice I feel like an intruder. We'll see how long I last. (actually was online for 2 hours before the connection went down, and I'm glad I did it; if I ever do something like this again, will have to make better plans to be sure to have a chance to actually speak to folks.)

It's still hot as Hades here and I had a hard time getting moving this morning. Flaked out on the yoga class, and didn't get around to any exercise this afternoon as I had planned. Had lunch with Trish and a friend of hers who has just been diagnosed and is still reeling with the news. The stages of grief must be gone through with this diagnosis. Then there's the next set of grieving levels to conquer when you are given the news that there has been lymph node involvement. She is just now dealing with that. I'm glad to have that hit behind me. I'm doing so well, just trying to stay positive now that I have accepted that I will also be doing radiation and that I'm starting to experience the neuropathy I had hoped to avoid. The No Surrender Breast Cancer Survivor website is very helpful and I was able to get a bunch of great information about treatment and complementary approaches from them. I will have to ask about exercise, because I assume it is always a good choice but read something that I can't remember the source of now that suggested that I may be better to avoid much strenuous activity when doing Taxol. I'd like that excuse today to assuage my guilty conscience.

Yipes

Well, it's finally happened. My fingertips are somewhat numb, my shoulders more so. It's a very odd feeling. I'm kinda scared, and am working hard to keep my focus on the outcome I desire, not the one I fear. I am continuing to take my Glutamine, and have heard that Carnitine and Alpha Lipoic Acid may also help, so I'm seeking some input of whether these can be taken concurrently or if they are either/or kinds of substances. I find it hard to imagine that they can't be taken together, because in one's diet, amino acids are combined, but with chemo one is wise to be very circumspect regarding every item that enters ones mouth.

The heat here is brutal; I've been hiding in the house since I returned from work. It's finally cool enough to sit on the patio, but I'm just too danged tired.

Third Taxol

Okay, 3 down, 9 to go. They gave me Benedryl again, but half of the previous dose. I've got the itching again tonight, but not very badly. So far no neuropathy, but some kind of intermittent diminished sensation in my shoulders, right at the back of the slope. I keep doing the glutamine and B6 and am hoping to avoid neuropathic trouble.

Glenda looked at my little scabbed area and said that she thinks it's an internal suture working it's way out rather than dissolving, and that sounds plausible. I'm concerned about a number of details, but not worried about any-feeling oddly calm and peaceful about getting through this. Just walking the road and waiting to see what is around the next curve. Life is all about change all the time, and a cancer diagnosis really brings that home in a very dramatic way, but so do loads of other diagnoses, and I've been thinking a lot about an old friend, Eric, who is suffering from ALS, and several friends and patients who are struggling with MS. It all sucks and it all stimulates the Zen impulse. Enjoy when and while you can; rejoice daily in celebration of all small miracles.

NIght before

Tomorrow I reach the quarter mark of Taxol. Yippee! I'm tired of being tired. I'm not completely exhausted most of the time, but today I reached the end of my 9 hour workday and opted out of the neighborhood watch meeting I had planned to attend because I was just too pooped. But honestly, there were days before any tumor was discovered that I would feel equally tired just from the intensity of my job. Today there were a couple of patients who were really having a hard time and suffering with high pain, and I still am new enough to the field to have to wrack my brain to be sure that I make proper choices of approach with patients who are that highly challenged. My thirty years of massage therapy have given me some experiene to fall back on, but major medical issues have a lot of associated details with which I am still gaining familiarity. To be fair to myself, so are some of my collegues who have been at physical therapy for decades. It's a big field.

But my port was giving me some pain today too. I've been doing some yoga, bouncing on my rebounder and stretching my neck and shoulders, staying very busy...maybe it's just that. But I had some occasional stabbing pains in that area today, also some aching in the right arm (the port is on the right side of my chest), and I need to remember to pass that along to my team. 

I also have to remember to tell Glenda tomorrow that I had some itching after my last treatment, and to show her a funny spot at the end of my scar on my breast - a tiny scabbed-over area that seems inappropriate so late after healing. How did it scab again? I expect it's nothing to worry about, but as I hyper examine every little thing, I guess I will need to point it out or sweat it out. What's the point of having upteen doctors if you don't show them all of your boo boos?

On Thursday, I'm going to meet with a radiation oncologist at another medical facility in Nashville. I want his input on what the next step should be, what radiation would entail if I do indeed do it, when it should start, etc. I need to make a list of things to discuss with him, including his recommendations for frequency of MRIs, as my current breast doctor is not planning an MRI until next year, and doesn't even plan to talk with me about it until October. I'm feeling really uncomfortable about all this, and have emailed him to request a phone call, but no response yet. So I'm glad I'll get some outside opinions. I've found every additional medical opinion I've received has been enlightening and very helpful to allow me to feel good about my choices, to make decisions that feel informed, not rash.

Sunday, Sunday...

I think I allowed myself to get dehydrated today. I went to the Y and spent half an hour on the strider, drinking a little bit of water, but not a whole lot. Then I spent about an hour and half buying groceries at 3 different stores and finally stopping at Green Thumb in Green Hills for water. I should have started drinking that water right away, because by the time I got home, I was headachy and shaky and had to lay down for a while. How did I let that happen? The constant eating and drinking and taking pills is a chore, an effort. Ah, yes, I remember the good ol' days of eating and drinking without counting every ounce, every nutrient. I miss those days.

Saturday celebration

I had a lovely day today on into the evening. Slept late (until almost 9 am!) and after Dave left for a day of music teaching I took the dog to the West Side Farmer's Market and picked up the week's veggies. Stopped by to visit my friend Rachel, then dropped dog and veggies off at home and headed to the center for a yoga class. I did much better in yoga this week than last, feeling only slightly dizzy and, having taken my iron pill, quite well energized. I was able to stick it out through the entire class today.

Went home for lunch after class and made a cucumber/tomato/yogurt salad with the fresh veggies-so good-and then made wheatgrass juice in the vitamix (with water and ice, then strained through a fine mesh gold coffee filter) and a big pitcher of lemon/lime-aide sweetened with agave nectar. I puttered around the house and vacuumed, cleaned up and put away things that had been left out during the busy week and prepared for my boss's daughter's wedding tonight, laying out clothes and making sure all was ready to go. I finally hit the wall and laid down on the sofa to rest just as Dave was getting home. A very energetic day. I like Saturdays to be that way.

The wedding was beautiful; bi-lingual as the groom has recently moved to the US from Spain and is still learning the American English language. He and his family were charming and the bride was adorable, uncontained in her exuberance. I was honored to be there. But as the evening wore on the music became louder and, for us, it was time to go as soon as the cake was served. In the past, I have always been one of those who feels that wedding cake must be consumed for luck and in honor of tradition, and I would usually wrap a piece in a napkin to bring home...a piece of cake to dream on. But, with as few sweets as I eat these days and with how squeamish I feel about them, the piece tonight tasted off-putting, not how I remember wedding cake to taste at all. I had been planning to take some home but after sampling a bit, changed my mind. And I had mused about and looked forward to it all day. Funny how things and our tastes change.

I have not had any further itching for the past couple of days; it was odd how itchy I was Wednesday night and then again on Thursday. Mostly my face, like I'd suddenly developed an allergy to my makeup; it hasn't bothered me before this week. I'm hoping that's not an allergic reaction to chemo that will prevent me from being able to use the Claritin instead of Benedryl, but I'll tell the team about it for sure. But fortunately, as I said, I'm not having any more of it now. I'm really feeling good.

Iron

My oncologist insists that CIA (chemo induced anemia) does not respond to iron supplementation. Well, yesterday I felt great with the Benedryl worn off and the Decadron still working, but also having taken an iron supplement. Today I started out dragging; it was a drizzly morning and that can make me sleepy, but I was also having the dizzies when I stood up from the pool side with aquatic patients today. I got home, took an iron pill, got a massage, took a bath and started feeling much better. Tonight I'm not as peppy as last night, but I am much perkier than I had been in the early part of the day. Actually, could be the massage - it was wonderful and I feel much less achy; didn't even realize I was aching. My body craves Karen's massages; they feel especially healing, grounding, and I always feel an overall improvement after a session with her.  I intend to continue using the iron either way until and unless it stops giving me even the impression that it's making a difference.

We went to dinner at our local Korean restaurant tonight, Seoul Garden, with friends Billy and Grace, and then came back and sat out on the porch to visit on a lovely evening, the first in a long time that has been fit for sitting out. I have a lot to do for that back porch still-it's under-decorated and under-furnished, but it's lovely to be out there. If the weather would just calm down a bit, I could try to get the yard under control and the patio fixed up. But patience is my middle name this year; I can't hurry the household improvements any more than I can the hair regrowth or the treatment time. It all has to go at its own pace and I have to be at peace with that because the alternative is madness and that is out of the question.

Taxol #2

yesterday: I didn't get out of the Benedryl today, but I got half the dose. It was lousy, but a lot better than last week. I'm feeling kind of generally itchy tonight, on my face and throat but am not showing a rash. It could be the heat as easily as the chemo causing it.

today: It's amazing; I feel so much better than I have in a week or so. Yesterday's hemoglobin reading was lower than the previous week, so I am not yet bouncing back out of anemia, and I am still having a bit of dizziness when I stand up too quickly, but today my energy feels good, back to normal almost. Yes, I'm anemic; I am a little less perky than usual. But I really feel good tonight, and went to the Y today and did some time on the strider before going to give a massage this evening...first massage in a month or so. I want to get back at it on a somewhat regular basis; I've missed it.

Last weeks lethargy could be explained a number of ways-there seems to be a 24 hour flu going around my office that manifests in muscle aches and mild nausea. I felt like that last Friday and early Saturday and just chalked it up to chemo. Or maybe it really was a need for a dose of iron, which I took last night and today has been so much improved. Or maybe it's a homeopathic remedy that I've returned to taking after having laid off of it for a month and a half.

Gotta go to bed now; never enough time to work on this stuff.

Preparing for Taxol #2

Today I spoke to Glenda about tomorrow's treatment and the plan to take a Claritin instead of doing the IV Benedryl. Apparently, it's no go. They can give me half as much, but again I was told that the risk of an allergic reaction is too great and it is Infusion Center policy to give IV antihistimines for the first 2 infusions, and to consider oral administration after that. A patient of mine who has been through this treatment told me that she had the same trouble and that they gave her the full dose the first time, half the second, oral administration of 2 pills the third, one pill the fourth and nothing after that, so I guess I will have to hang in with this and see how it goes. I do not intend to have an allergic reaction. I am not happy about the Benedryl.

I have to remember to put my Emla cream on the port 2 hours in advance of the blood draw, though; I was tardy with it last time and it was truly painful to get stuck. I will set an alarm on my phone to remind me. It may be embarrasing when the alarm goes off but I'll deal with that. The port accessing is hard enough; I don't need it to also be painful.

Today was a much better day than yesterday. I took regular walks at regular intervals, starting with a pre-work promenade with the dog, and then a couple of 15-20 minute bouts on the track at work. I've also cleaned off the rebounder I bought at a Goodwill back in LA before we moved to Tennessee and which has been gathering dust in the garage for the past 12 years and brought it onto the back porch and have spent a few minutes on it last night and this morning. It's really too bloody hot today to do anything outside, amazing that I made it out for the dog walk this morning. But the increased activity today has helped me, I think, and I do feel much less lethargic than I did yesterday. I'm hoping my energy will continue to increase now. I took some iron this morning too. I don't think I'm in danger of hemachromatosis, so I'll keep taking it.

I need to find a good book to take to the clinic with me tomorrow. They have lovely flat screen TVs with DVD players in all the treatment rooms, but not enough remotes to go around. Without that, it's useless. So no point in bringing movies to watch. Maybe I'll bring this computer and try to write or watch something on this. That's probably the ticket. Then Dave doesn't have to be inflicted with my TV junk fascinations, like Big Love or Mad Men. I don't usually watch much TV except for a couple of late night shows, but particularly during something like the infusion, it's calming to have a distraction like that. And I still have several movies on loan from my sister waiting to be watched-yeah, I'll bring the computer. Now I have to go pack some sandwiches for Dave to bring down to the center when he meets me for the treatment; we tried the food from the cafeteria last week and won't make that mistake again. We'll be happier with a brown bagger.

Taxol

I'm tired. Surprisingly tired. But today was an odd day at work, and I think the slow pace prevented me from ever gearing up and getting out of my doldrums. Even started into a migraine at around 4 pm, but a couple of Excedrin Migraine tablets took care of it, thank goodness. I came home and meditated on dealing with the fatigue and actually feel better.

So, so far, the fatigue is the worst of the Taxol. I was tired over the weekend, and now again today. I sure as heck hope this is not in store for the entire 12 weeks. Or beyond...I WILL find some way to combat it. My oncologist told me that iron would not help as this is not iron-deficient anemia, but brought on by chemo. Still, be it the placebo effect or a real response, I felt a bit better when doing iron, and I will get back to it tomorrow. Also to the homeopathic remedy that had helped me earlier in my treatment. I did walk for about 20 minutes earlier today but didn't get it together to walk the dog tonight. Maybe in the morning.

I'm also hoping that Wednesday will be easier with an oral Claritin dose rather than IV Benedryl. Perhaps I will not be knocked out by that and will have Wednesday evening to do some activities, even laundry, which would be preferable to losing that entire time to a drugged out sleep.

I am taking 30 grams of Glutamine daily, 10 grams 3 times, to fight the peripherial neuropathy that is the most commonly reported side effect of Taxol. Several recent studies indicate that there is no danger and significant benefit with using this amino acid to address that side effect so I'm on it. It's pretty easy to take, a powder you dissolve in water or juice, or even sprinkle on fruit, cereal, etc. Anything I can take in a non-pill form makes me very happy as my already-present swallowing difficulty has been a bit exaggerated since beginning chemo. I'm getting physical therapy myself to address this and I do feel like I'm able to swallow a bit better, with less stuck pills in my esophogus lately, but it's still a chore to get them down and requires preparation and focus to avoid pain, coughing or hiccups. Hopefully more PT will lead to a huge reduction in this response.

Anyway, I always think of hundreds of things I want to write about here during the day when I am away from my computer, but at the moment, that's all I got. Be well. XOX.