I moved to New Orleans from Nashville with my husband nearly a year ago. It was stressful to make a move after 36 years in our adopted city and 26 in our big rambling ranch house. We had to do a ton of downsizing, and strategizing, and upgrading our new home. It was beyond stressful; tempers were flaring and some responses to daily situations were irrational. I knew something was wrong, but I couldn't quite put my finger on it until we started engaging with new and talented medical providers and got some blood work back indicating some concerns. 

My husband has been diagnosed with 2 cancers. A high and rapidly rising PSA, and some changes to what had been stable lung nodules led to a couple of PET scans and we are lucky that they did -those scans illuminated a throat cancer while giving the assurance that the lung nodules were not concerning, and that the prostate cancer, though aggressive, had not metastasized. All very shocking and stressful, but also very survivable. Throat cancer, early stage and HPV related which is actually the good news - it's very treatable and a cure is expected. The 33 radiation treatments that he is undergoing for this though are very intense, and the challenge to his sense of well-being is formidable. He is dealing with it like a champ, following the same philosophy that carried him, 21 years ago, through stage 2 lung cancer. He is finding ways to celebrate life and to laugh! He is watching his beloved bicycle races and soccer matches, and he is resting when able. 

Complicating the challenge are hot flashes that are occuring due to a hormone blocker he is taking to address the concurent prostate cancer. This is responding very well to treatment. So many men in my life are dealing or have dealt with prostate cancer; he has a lot of empathy from them and from my menopausal women friends. None of us like the hot flashes, but at least in his case, they suggest a desired hormonal response. I've lost loved ones to prostate cancer, and it's ugly. As is all cancer death, not to mention other losses due to illness. But cancer is really the monster that gets me to sit down and write in a way that nothing else seems to. 

Ironically, another male family member is also dealing with throat cancer! This one, caught even earlier, is unclear of origin, but the course of treatment, 28 radiation sessions to the vocal cords, is expected to again be curative. So the outlook is good for both of my sweet loved ones, and I drive the bus daily to take both men to Touro Infirmary for their radiation. I look forward to the end of this ritual and getting back to exploring more of New Orleans. 

Head and neck cancers are on the rise and much of it is due to HPV. I'm not sure why that is increased in prevalence and will have to do some studying on that. But the treatments are effective and survival is frequent when caught early. Radiation for treatment of any head and/or neck cancer is known to very frequently result in lymphedema, which may not be obvious with signs such as a swollen face, but will often impair swallowing and potentially breathing as well if not addressed. When a patient reports any difficulty swallowing or breathing or even starts snoring or increases the intensity of that, they should be evaluated. Treatment can be gentle, mainly exercises for the pharanx, face, neck and tongue, or it can be more involved, using compression devices and/or garments, and involving Manual Lymphatic Drainage (MLD) in these areas and even intra-orally. I'm trained in doing this and helped many patients with these interventions during the time I worked at Vanderbilt University Medical Center in the Lymphedema Clinic there. It takes some self-control to avoid trying to intervene with the treatments my family are receiving, but I'm glad to know that in the event that the condition starts to become evident once they have finished their hospital-based treatment, I will know how to step in and help, assuming they will let me. 

At this time, there is only one Pneumatic Compression Device (PCD) on the market to treat head and neck lymphedema, and I hope that the doctors treating my guys will order this if they need it. But there are other devices that are helpful in treating this condition, and I'm grateful that I have some of those. Deep Oscillation, Low Level Laser devices, negative presssure machines also known as mechanical cupping-all of these can complement that basic MLD that I can do with my hands. And deep abdominal breathing makes a huge difference in moving lymph in the entire body, so that is a therapy a patient can engage in along with exercises to achieve good results. The technology for caring for these patients has come a long way since my own cancer and my clinical experience, in just the last decade. I am filled with hope! 

If anyone wants to hear more about what I have learned for having a best outcome, I am happy to talk. Reach out to me through this website or on social media. And check back for more; I'm just getting started! 

I started this blog in 2010 when I first had an ovarian cancer scare, then found out I actually had breast cancer. I go through my experience with first my BSO and recovery, then my cancer treatment journey. I want to make sure not to lose this stuff, and I am about to start a new cancer journey blog (not my own thankfully but still important!) and I will begin that shortly. Stay tuned dear reader! 

​Monday, February 8, 2010
life before BSO
It seems like a good time to start this blog; the night before the surgery. I have been preparing myself all week intellectually, spiritually and emotionally, and today I have prepared myself physically by doing a bowel prep, bathing and rubbing my abdomen and thighs with the Sage wipes my doctor gave me. Wish I hadn't shaved, though; my thighs are itching now like crazy! Probably somewhere it said not to do that, but I guess I missed that instruction. Ah well, here goes something!

I was hoping to avoid this-to become an old woman with all of her parts intact- but prudence at this point leads me to this choice. I'm tired of worrying about it, tired of the bi-annual poking and prodding and picture taking of the organs to micromanage their progress as I try to live a carefree life. Or at least as carefree as possible. I've had a number of small health issues to overcome, some of which are so unusual that I think they will be of interest to a reader when I get around to writing about them, but for now, I'm battling fatigue and an Atavan that I just took; time to get sleepy, and meditate one more time before surgery day.  
 
Tuesday, February 9, 2010
Surgery Day
I'm home; it's 7:30 pm here in Nashville and I've been back around an hour after waking up and then picking up a prescription for pain on the way back. I feel pretty good; but like I'm going to fall asleep in my chair at any moment. More tomorrow, but for now, it is just amazing that I'm awake enough to take a stab at this. 
 
Wednesday, February 10, 2010
Day after surgery
I slept pretty well last night, but was glad that I had swapped sides of the bed with my husband, putting me closer to the bathroom. I was able to get there on my own, but would have had a hard time having to navigate any further-I was very wobbly. Today I've continued to take Oxycodone and will probably keep that up through tomorrow, but hope I can transition to Motrin after that.

The surgery went great, but the big question, still hanging, is the result of the pathology, and that will probably not be known until the beginning of next week. That is the hard part-the waiting, although I feel in my gut that all is well, and my CA125 is very low at 3.6.  

It was a busy day, with numerous deliveries and a couple of visitors and I didn't get to rest or write much, so I'll have to get to the longer entries containing more of the background that led to this experience at a later date. For now, I'll just say that I decided to write this blog because I could not find very much information on the subject of Bilateral Salpingo Oophorectomy, or the removal of both tubes and ovaries, in women who are past menopause and who have family histories of ovarian cancer. That is my situation; my sister is an ovarian cancer survivor of 4 years, and our paternal grandmother died of the disease when I was an infant, before my sister was born. I have had a known ovarian cyst, assumed to be a dermoid, for about 10 years.

Even before my sister's diagnosis this cyst was being monitored biannually. It was tiny, they told me. I had no pain that I could attribute to it. I had the usual menstrual cramps and often felt that I was able to tell when I'd ovulated, but I never had to cancel appointments or stay in bed during my cycles. When my sister was diagnosed during the same time frame that my husband was being treated for lung cancer, I asked my husband's oncologist what he suggested that I do to manage my risk. He referred me to the gynecological oncologist at Vanderbilt University Medical Center (my current employer) and I began to monitor my situation with that doctor, Marta Crispens, at the helm. We agreed that if it ever changed, we'd take the ovaries out. And it never did, up through the pictures taken in August '09. But then in December, I had what seemed like a period. Then again in January. I was surprised, but not alarmed. 

I'd already made an appointment with the endocrinologist in the Center for Women's Health at Vanderbilt to discuss my BHRT, the tiny amounts of vaginal estrogen and transdermal progesterone I'd been using, so I brought the bleeding to her attention. She at first thought I might have exited menopause, gone back to being menstrual, and I was kind of excited about that thought-I'd never heard of that happening before, although I had heard of women sometimes having a couple of months of bleeding when they start out on a new hormone suppliment, particularly progesterone. Well, blood tests disproved this theory, and then we did the ultra sound.

more tomorrow. 
 
Thursday, February 11, 2010
Thursday
I'm losing track; it's 2 days post isn't it? Today is my sleepiest day so far. My bowels are moving again, maybe more than I'd really like! But I'm in and out of consciousness today. Enjoying just lying in bed and watching old TV shows on Netflix. What luxury. Friends drop by and flowers arrive. The dog keeps a bedside vigil. This doesn't suck, but I'd like to get back to work anyway. 
 
Saturday, February 13, 2010
Saturday
Yesterday I tried to get off the narcotics; I hate the way Oxycodone makes me feel-any codine medication really-and I felt like a narcaleptic on Thursday, alternately wired and suddenly nodding out in the middle of a sentence or an activity. So yesterday I took only Ibuprofen, 600 mg every 4 hours or so, but by late evening I was having bouts of intense, throbbing pain and was afraid I would not sleep without help in the pain releif department. So I took 1 of the generic Percocet 5-375 pills and slept pretty well. Today I feel intellectually ready to reintegrate into the world, but could not bear the thought of getting dressed and definately did not want to drive after taking that pill last night. I'm taking 400 mg of Ibuprofen every 2 hours today, with reasonably good results, but some mild nausea between  bouts of ravenous hunger. 

A friend who recently had a hysterectomy gave me much advice in advance of my surgery, including some pre-surgical meditations that were very helpful in getting my usually-high anxiety levels under control, so I was very prepared for that part of this experience. I called to thank her for that and during our conversation, she warned me that many people she has spoken to have suggested that depression is a frequent follower of general anesthesia. I'm thinking that depression would be an unsurprising experience after any major surgery for numerous reasons-sense of aging, sense of frailty, life-changing event, the weakness of the healing time period-all of these experiences could be depressing. I am fighting regret-an emotion I rarely indulge in-and moments of sorrow, but mainly feeling frustrated that I am not yet feeling well enough to begin to approximate a normal day, and wondering how I will have the stamina to return to my job duties in just over a week. 1 day at a time, I tell myself, 1 day at a time.

An interesting symptom note: so far, the burning mouth syndrome that I have been dealing with for a year and a half is quiet post surgery. I can tell I'm clenching my teeth in my sleep, although less so than before the surgery, but my mouth pain has not been stronger than a minor irritation since Tuesday. I hope that particular situation will continue.  If I remember correctly, the meditation I did presurgery started to address the mouth pain and to send it on a downward trend. So is it completely anxiety-related? 
 
Sunday, February 14, 2010
Sunday-Valentine's Day
I woke to find a Valentine waiting for me; it said on the cover "In the whole world, each person is assigned one other person to be their special soulmate, their valentine"-open the card and the punch line-"ha - ha!  you got stuck with me!" made me laugh so hard I was afraid I was going to do some damage to myself and bust a stitch.  I had wanted to make him a card, had started to do so several times over the last few days, but that was one of the casualties of the pain meds, one of the numerous things I started to do, becoming distracted midway and never completing the task. Dave tells me that I am his Valentine; he doesn't need a card. 

It seems that I've developed an infection. Probably not a very bad one; last night I discovered a little seepage from the incision at my navel and noticed that area was somewhat tender, red and hot. I called that clinic and spoke to the on-call doc, and he prescribed a round of antibiotics which I started today. Friends had come and brought dinner, staying to eat with us, and I'd had to take a pain pill, making me kinda spacey. Guess the infection was the source of the spiking pain then and the previous day as well. Our friends noticed my exhaustion and left early, and shortly after that I noticed the drainage.

So back to the internet searching for meditations to calm my anxiety about the healing set back. I did find some on I Tunes and on the internet, including a guided Reiki practice that I find relaxing and seems very helpful. So I'm trying to stay calm, take my antibiotics, and be well. Somehow, I never even considered this potentiality-I stressed over the possibility of a malignancy, I continue to fret about resultant hormonal changes (no hot flashes so far), scar tissue, pain...but I just never considered that an infection might interfere with this best-case-scenario that I believed I was experiencing. And I may be still...I'm still hoping this will not cost me time. 

My boss came by to visit me yesterday afternoon, and today one of my coworkers came and both brought groceries, flowers, books...I love my job and the staff of clinic where I work, and I want to be able to get back there at the time scheduled and planed for. So I'm meditating and taking my meds and doing some gentle exercises in the bed, although they do amp up the pain. I'm receiving no pressure at all from my employers, but I myself feel out of sorts being away from work, both the clinic and my private massage practice, and I feel a strong responsibility to my clients and patients. And I love my self image as a strong and healthy person; that sense was a major influence in my decision to do this preventative surgery in the first place, as I've always thought preventative surgery runs the risk of turning a healthy person into a sick one (for at least a while) in the effort to avoid future major illness, which may never come. It would be too ironic to find myself truly ill now; I won't have it. 
 
Monday, February 15, 2010
Benign
I had been sure of it in my gut, and had wheedled the preliminary report information out of the clinic nurse on Friday, but today I got the official call-the final pathology report was in and the results were a wonderful, positive negative. Nothing in the core needle biopsy of the cyst, nothing in the peritoneal washings. The disease that cost my grandmother her life and that terrorized my sister will not take me! Whatever it is that gets me in the end, it will not be Ovarian cancer. The nurse said "it was just a dermoid", but I didn't ask if any endometriosis had been found, or anything else that might have led to the 2 bouts of bleeding I'd had, or the pain I've had in the right groin from time to time. I will ask at my follow up visit on the 24th. 

In addition to the good news, I'm feeling WAY better today; the antibiotics have kicked in. I had started to feel kind of achy all over, not quite flu-y, but not well, with pain in the low  back that felt like aggravated kidneys, but today that has subsided and my energy seems much more normal.  My friend G. noticed it while talking on the phone today; she told me that I had been sounding  spacey up through yesterday, but today I sounded different, and I could feel it too-could feel myself finding words and finishing thoughts that had eluded me earlier in the week.

I feel that it's too soon to really be able to attribute any of my symptoms to the lack of ovaries....there are occasional hot flashes, and I've woken up sweaty a couple of times, but that kind of response comes from drugs and healing and infections, so I don't assume that I'm able to tell yet if any of these symptoms, which frankly have not been very difficult to deal with anyway, is a result of my new physical state. 

I have fleeting moments of feeling less feminine, like a "fixed" dog, a bitch who will never come into heat. And there sure was a lot of heat in my youth; the sexual fire has been dampened for a few years now anyway, and I will never miss the painful periods. Mostly, when those thoughts arise though, I let go of them without effort. I feel good about this choice, and delighted that the results confirmed my gut feeling about my health. 

So I'll keep posting, and will write more about my background, see if I can find a health profile of some sort to help offer some window of insight into my experience just in case it might be of use to someone in the future pondering this kind of surgery; I wish I had been able to find some information like that a couple of weeks ago when I was looking. 
 
Tuesday, February 16, 2010
One week out
It's hard to believe it's been a week since the surgery. I'm still using the generic Percocet to sleep as my pain seems to crescendo around 8 or 9 pm with only momentary elevations earlier. During the day, it's just Ibuprofen. I'd like to get off of all of it, but I'm just not quite ready. And with so many pills to take - the antibiotic 4 x per day, 400 mgs of Ibuprofen every 2-4 hours, senna laxative morning and evening, Percocet 1 or 2 times at night, my usual vitamin and mineral suppliments (sans E until no more bleeding) - I'm keeping a log of each med at each time that it's taken, as I just can't keep up with it by memory. I'm afraid I'll miss a dose, or double up, and I really want to be conscientious about the narcotics and the antibiotics. Simethicone for gas pain was a great suggestion from a friend as well, as increased intrabdominal pressure at this time can lead to complications and spike the pain; I hear it's the source of much misery after pelvic surgeries, and I really haven't had a big problem with it. 

Honestly,  it's not the intensity,  just the location of the pain - the soft underbelly, that vulnerable core area  - that makes it so difficult to bear. I've referred to it as "creepy" pain, not terrifically high most of the time but occasionally like a sudden knife in the gut, making me feel pulled toward the fetal position, protective of the vitals. I have to remind myself to stand up straight and tall, and I have increased understanding of the reasons that so many of my patients need postural coaching.  

I got bathed and dressed today and read an entire novel, a book with some very hot, sexy passages, and was happy to discover that I still respond to that type of literature as I did in the past, confirming that ovary-lesness will not prevent me being stimulated by passionate images, and reaffirming that the human body's main sexual organ is the brain. 
 
Thursday, February 18, 2010
Big day and some background
wrote this yesterday but fell asleep before posting.  

I had a big day today; got up and went to the hairdressers as I was way overdue for a cut and my somewhat complicated color situation - I use organic henna and indigo to dye my hair and that is a little more of an ordeal than contemporary hair dye. Lately, a friend who is a wonderful hairdresser has been putting the color in for me making the whole process so much easier, still, with the weather we've had lately and my recent surgery,  I've fallen behind on my cut-and-color schedule. I was glad to get in to see her today, but it made for an active morning and early afternoon with some shopping thrown in, and I was just exhausted by the time I got home.  I need to work my way back up to being able to tolerate a full day of work, so it's good that I pushed the boat out a bit.

I've been trying to come up with a format to tell a bit more about my background, as it was the lack of any information regarding a response to this surgery from a woman in my situation, specifically post-menopausal and with a first-and-second-degree relative having had ovarian cancer, that inspired me to write this blog. 

So here's the start of my health profile
age: 51
height: 5'6"
weight: 152 lbs last time I checked; it has been up and down over the years, but this is around my average adult weight. It has been as low as 138 and as high as 179 in my adult life.
Heart rate: 60 bpm; Blood Pressure: 111/64 last time it was taken
Heart disease runs in my family but so far, my heart checks out great.
I have a swallowing dysfunction that sometimes makes it difficult for me to eat or drink, but I seem to be able to control it. I have had a condition called "burning mouth syndrome" for the last year and a half, but that has been completely under control since about 1 week before the surgery; I'm hoping that lasts!
I had a 2 tick bites last summer that made me very sick and I was treated with antibiotics; in August I came down with Shingles and that was the sickest I have ever been.
This has been a rough year.

Gynecological history: no children, 1 abortion at age 19; I used an IUD for birth control most of my adult life as I was always in a steady relationship. At one time I was diagnosed with Pelvic Inflammatory Disease with one of these IUDs and I had trouble conceiving after that. Miscarriage at age 33. Tried to use "the pill" for approximately a year and a half during 2 different trials, once in my early 20's and once on the "low dose pill" in my early 30's, but both times became severely depressed on it and was told that I was "not a candidate".

More later... 
 
Tuesday, February 23, 2010
Almost time to go back to work
I can't believe I missed writing for the whole weekend! I finally found the HysterSisters "Ovaries Only" forum and spent time looking to see if I could find another woman with a similar situation to mine who might give me a clue as to what to expect. Of course it's different for everyone, but somehow I still yearn to hear the long term experience of a woman who, like myself, was post-menopausal and feeling good before having this surgery. I haven't found her yet, so the blog continues to seem like a good idea, a potential source of info for someone who will come later. The writing itself is cathartic anyway, and interesting to review and to see what was on my mind last week, and soon, last month and last year.

I have had very little pain, and I think that in itself is fairly unique. It sounds like other women healing from laparoscopic surgeries report various pains and limitations that I haven't shared. I still have the occasional sharp shooting pains mainly at the naval incision, and some sort of aching, burning sensations around it. The skin feels funny in response to light touch, sort of bruised and semi-numb. But the pain is well controlled with OTC pain meds and only my stomach is really suffering, and not too very badly. 

What I've noticed over the last few days as my activity level has increased is that it has a very thin boundary; when I crash, I really crash. I'll be cleaning the kitchen, talking on the phone, doing some computer research and then suddenly I'm asleep sitting on the couch, computer on my lap, unable to continue. That's the factor that makes me nervous about going back to work on Thursday. It sure would be embarasing to fall asleep with a patient! I doubt I'm in danger of that, but I am planning to come directly home from work for the first week, and I have scheduled in breaks that are long enough that I can go and lie down if I need to. 

I gave a massage tonight to my longest-standing weekly client who has been patiently waiting for the last 3 weeks to resume his sessions; it was okay, with the most difficult part for me being the carrying in and setting up of the massage table. My pain went up a bit, but not too bad, and now I'll take some Tylenol-should've done that before I started the 90 minute session. 

I am having some mild menopausal symptoms...sleeping hot if not actually sweating, hot flashes that have not been messy and dripping, but somewhat uncomfortable, as I just don't seem to adjust to the indoor temperature as rapidly as I used to. But it's not too bad. The sleeping has been a bit challenged so far-again, not as bad as during the big change, but not as restful as before the BSO. And a bit of vaginal dryness too...I'm trying to avoid using BHRT for at least the moment, as it seems that a cancer scare ought to trigger the desire to avoid them, and I haven't really tried to treat my symptoms with botanicals in a long time, and maybe now, this far past my menstruation days, it will be adequate. 
 
Thursday, February 25, 2010
First Day Back
I didn't sleep well last night; I think I can chalk that up to anxiety about returning to work today. It went fine, but then I did have a half-load of patients-there was plenty of time for charting. Tomorrow is the same, a half-schedule. Next week 6 patients a day, and then back to a full schedule of 8 patients a day. I had hoped to be so well recuperated that I would get ahead with projects today, some studying and reading policy that is required for the job, but I was moving pretty slow and didn't get ahead as hoped. Not much pain; I switched to Celebrex last night and it is working for me much better than Tylenol or Ibuprofen.

I was dog tired by the end of the day. I'm going to bed soon-glad to have not too much to do aside from work right now.

Yesterday I went to my post op visit with the surgeon and got a clearance to go back to work. She gave me a copy of the pathology report which informed me that my ovarian cyst was indeed a dermoid, and that as these can be  really any type of body cells-most famously teeth and hair-mine was mainly thyroid tissue. And apparently although the left ovary was normal, there was a cyst attached to the left tube. Ah the things that go on inside our bodies that we are never aware of-its amazing. I suspect that I'm going to feel better than I had before the surgery once I am all healed up.

My burning tongue which burned consistently for over a year has been quite cool now for several weeks. I pray that will continue. I'm almost frightened to mention it lest I jinx it. 
 
Friday, May 21, 2010
Breast treatment
I have been away from this blog for a long while now, suddenly distracted by a more pressing health issue-a tumor found during a routine breast screening (MRIs for me as mammograms never show anything in my case), just a few days before my 25th wedding anniversary. Please don't tell me cancer is a gift... A biopsy showed malignancy, but probably early, stage 1, ductal carcinoma, and a lumpectomy shortly thereafter revealed clean margins, but small amounts of disease in 2 of the 6 lymphnodes taken. Ah me....now we are in for the big cancer killing experience of chemo and whatever comes after that. I plan to blog throughout this experience and will try to fill in the early details that I have been just too darn busy to record. I also plan to work, and hope I will be able to achieve that level of normalcy, as I love a routine. I think that will help me. 

It's been a wild time, filled with momentous events, as the big flood we have recently experienced here in Nashville gave some valuable perspective to my plight-a personal challenge with opportunity to fight, unlike some of the unlucky flood victims' situations-but it delayed my receiving the pathological result of my surgery as my doctor himself was a flood victim. My meditation skills, always a valuable asset, have been radically improved in an emergency-response fashion; I had to stay calm an extra 3 days before finding out my fate. And while the storm rolled over my house during my surgical convelescence, I sat and watched as rain poured in down the face of the fireplace-a beautiful sight, but indicative of the condition of the roof, which will now be replaced next week.

Surreal-this whole experience has had an aura of that, but as time goes on, it is beginning to feel like a new normal. I feel fine physically, and it is hard to reconcile the concept that I will have to poisen myself to prolong my life. But the fear factor is diminishing and so far, I'm still my same high-energy self. It will be interesting to me to review how each day unfolds. Taking it one day at a time. 
Saturday, May 22, 2010
Busy Day-After-Surgery
When I woke this morning, I felt pretty bad. I thought about the upcoming mornings-after that I will experience and decided I was going to make up my mind to get up and feel fine. Part of feeling bad probably had to do with having let myself get behind with my pain meds yesterday and having taken 10mgs of Valium to help me sleep. But once I was up and moving, I felt much better. I made a point of keeping track of my meds today, writing down each time I took one. I also used a homeopathic remedy that my friend who is a specialist in this field gave to me. It seems to work synergistically with the oxycodone. We went to a couple of farmer's markets, Grace driving as I cannnot while still on the meds. Did a lot of cooking, had some photos taken of Dave and myself-I'd wanted a portrait of us for our 25th anniversary, which was the day before the biopsy and kind of got ignored with the situation as it is-and even got a nap in this afternoon and watched a movie tonight. Busy day, pretty normal. Enjoyed the heck out of it. 
 
Tuesday, May 25, 2010
Day before infusion # 1
Okay, so I'm apprehensive; who wouldn't be?  But overall, I'm feeling pretty good about everything. My port incision is healing up well, and I think it will be a very big improvement over having my arms beat up with needles on a regular basis. Just gotta remember to put the numbing cream on it in the morning before I leave the house, and to bring it with me. I need some kind of med calendar, so that I can keep track of all of the various pills I'm taking and when. Not to mention the supplements.

I had an MRI of my heart taken today; part of a clinical study that is trying to predict which people will have cardiovascular issues with the chemo regime I'm taking. I feel this can only benefit me as it means increased surveillance, and i can drop out any time I chose. I'll do another MRI on Friday. I feel bionic! And very well cared for. But it's hard to fathom that I have had a malignant tumor and that I may have some bad cells left in there when I feel so darn WELL! A bit tired tonight as I didn't get much sleep the past couple of nights, and as I took a Valium to make it through my MRI, but overwhelmingly I feel just great, strong and healthy. I plan to stay that way. 

Yesterday we had a new roof put on the house; had to empty the attic-boxes are everywhere and the house is a mess! I'll get it cleaned on Saturday. And tomorrow morning, before my doctors appointments and infusion, Dave has a semi annual check up with his oncologist who is leaving Vanderbilt next month. It's a hectic week. I'm looking forward to the holiday Monday. 
 
Wednesday, May 26, 2010
1st infusion
It was weird; a weird experience, a long and wild day. I hope to outline the details when I am less tired and getting to this earlier. I feel pretty good, but a little weird. John Prine is on Letterman. That is nice...
 
Thursday, May 27, 2010
Day 2 of chemo cycle #1
I feel pretty good; I woke up somewhat queasy, trying not to be fearful that I would be actively nauseous. I took the prescribed meds-Emmend and Dexamethasone-and made myself eat something and discovered that I felt pretty good pretty fast. I expect the Dexamethasone is making me feel tougher than I really am, but it felt great to be able to go to work and be able to do my job without much trouble. I went for a brisk walk this afternoon with my coworker Carey, and she noticed that I was doing some huffing and puffing and walking slower than usual, but I got in a good walk and walked a bit a couple of other times as well. Wore a blood pressure monitor all day that went off every half hour and recorded data on a small drive; that was an annoying inconvenience, but surely a useful source of monitoring information for the study trying to discern which women might develop  and me as well. I'd meant to come home and walk the dog, but went to buy some groceries after work and once home realized that I had left my medications on my desk at the office. So the dog got a ride in the car instead of a walk, and I am writing this blog for anyone who is interested in this minutia, and for me to have a reference of symptoms and what is working to combat them.

Frequent snacks and small meals seem to be a good approach to staying grounded and avoiding nausea, and I suspect the appetite today, larger than it has been for quite a while, is also courtesy of the Dex. I am only supposed to take these for one more day, and perhaps that is why I have heard that day 4 & 5 tend to be the toughest; you're coming down from those meds at the same time your white blood cells are at their lowest.  

Yesterday was wonderful in some ways; we got to see Dave's oncologist, Dr. David Johnson, for the last time after nearly 5 years of warm, regular visits-he is moving on to Dallas. We will miss him. But the word he had for us is that  Dave that he is looking good, blood work and chest xray clear and stable weight. And Dave got to meet my beautiful Indian Oncologist, Vandana Abramson, and the equally lovely research doctor Dr. Vinapalli who directs one of the studies with which I'm participating.

But it was plenty horrible and scary, too. The port is a wonderful alternative to getting lots of needle sticks, but it is rather central-makes me nervous, but is the lesser fear. Feeling the drugs going so deep into my body, well, I'm sure there's some kind of sensuality there, but I'd have preferred to never contemplate it. A great nurse can make all the difference, and I had a great one in my chemo nurse, but had a research nurse involved who continued talking about blood after asked Dave had to go teach, but between the nurse and Rachel, I was kept quite entertained. I must remember to bring more snacks to these things; the cancer center offers lots of snacks, but mostly of the kind that I prefer not to eat-peanut butter crackers, cookies, coffee and water in styrofoam cups, and thankfully bananas. Better to pack a picnic.

I'm participating in a clinical trial and a couple of related research projects; it means I get a lot of extra surveillance. That means that I have a crazy schedule and less time to call friends; those calls have  been a great treat since my diagnosis; must keep up the communication. The lovely messages left on my FaceBook page have been humbling and helpful. I thought that I had a very strong dose of this kind of encouragement as a spouse in the cancer experience, but as a patient it is a mega-hit. I'm a lucky girl.

Every good day is a good day, and today was a good day; let's have another tomorrow. 
 
Saturday, May 29, 2010
Day 4
The day of the infusion is day 1; that was Wednesday. I worked Thursday and Friday-mercifully slow days this week with the holiday coming up- and did okay. The anti-nausea medications given are effective and I have simply felt queezy over the last few days, staying hydrated and trying to keep something in my tummy at all times. Plain rice cakes, which I've never been fond of, are easy to eat and seem to do the trick. Lots of green tea and ginger tea too are helping. And staying reasonably active, although today I am really taking it easy. I've been warned that this is often the worst day, and so far, if this is as bad as it gets, I can tolerate it, but I'm glad I didn't have an agenda. I am about to go off to meet a friend at a make up store and prepare for the point at which my heavy dark eyebrows and lashes are gone-although I'm pretty good with makeup on the rare occasion in good health that I choose to use it, I will need help to know how to "make up" for that. When I get home from that excursion, I plan to lay low, and walk the dog after the sun goes down as it is a hot day. 
 
Sunday, May 30, 2010
Sunday, Day 5
I wrote early yesterday; the day got worse. So far, yesterday and today have been the days that have been hardest to keep moving, to eat and to keep up my spirits as I contemplate the length of this regime. One day at a time, one bite at a time, one step. One blog. 

I was okay yesterday at the mall with my friend Mary-Ann, who helped me scope out makeup for the time when I will need it, a skin care plan to avoid dreadful dryness, and to enjoy, for the time it remains on my head, this little chic hair-do. But the trip exhausted me, and although I had planned to do a bit extra shopping on the way home, and to stop and visit with Hilary for a few minutes, I just couldn't bring myself to any extras. I went home and napped, and continued napping on and off for the rest of the day. The long sleep last night was surely very healing, but I can't remember when I've slept so long, even with the few surgeries I've had this year. 

Today has been better; I was able to do some shopping this morning, and to do some housekeeping - laundry - this afternoon, and Dave and I re-hung some artwork and some curtains that had needed attention. Don't know if I'd mentioned that we had a new roof put on the house last Monday, just before I began treatment, and had to wait for all that pounding to be over to rework the wall hangings. I am also trying to figure out where and how to grow the wheatgrass seed flats that came with the kit my dad sent me at my request; I know I want the fresh stuff and that I will be ready, willing and able to juice it, but the growing of it is a bit of a mystery - how do I keep the trays from leaking all over my floor when there are no underliners? How do I keep my cat out of the trays of grass when they are lush? I guess I'll figure it out as I go. 

The queeziness has been really rough yesterday and today, and I have been trying to get by with only the anti-nausea drugs, Emmend and Dexamethasone, that they give on day 1-3, but today I tried the breakthrough medication Zofran and it is indeed helping. I'm trying to keep the meds to a minimum, but gotta get through it. One day, one bite, one pill, one breath at a time. 
 
Monday, May 31, 2010
Every day's a new day
I wrote yesterday at a low point; I finally gave in and took an anti-nausea medication that I'd been avoiding just in case it made things worse rather than better. It did it's proper job, however, or else I just timed it right, and I finally regained an appetite, and stopped feeling so low energy and blue.  I had also done a meditation which helped, and I ought to do that again before I go to bed this evening. 

Today has been a totally different day. I have been active - taking the dog for a long walk - and I got a massage this morning before going grocery shopping and doing some housework, making dinner, and just generally staying busy the entire day. I feel nearly normal, and today was much like an average Sunday for me. I'm grateful for the holiday, and hope going back to work tomorrow won't be too tough, but I'm very eager to see how I do.

I'm enjoying my new "do"; it's so easy to deal with this short short cut, and somehow, young people seem to be more at ease with me...that may be an illusion, but it does feel that way at the moment. Too bad it will be gone soon, along with my eyebrows and lashes; it will be interesting to note the responses I receive to that. 
 
Tuesday, June 1, 2010
Tuesday June 1; back to the office
I walked in today expecting a full schedule of 8 patients and was concerned about how I was going to get through that, not yet trusting my level of energy. In reality, every day of life is that way-one never knows when we might just hit a wall. But I had a couple of cancellations, and took a long walk and a leisurely lunch, and managed to do pretty well with work except for a mid-afternoon attack of heartburn. Time to bring a bucket of Tums to the office! Thank goodness Jane already had some there.

Carey seems to be making it her personal mission to ensure that I get my exercise, and I'm grateful for the cheer-leading on that. It's so easy to get distracted by minor details while in the office and to miss available moments to get out and get some sunshine or work up a sweat, or just experience a change of environment. I get lost in the computer or in trying to reorganize the mess on my desk and often miss stress-reduction opportunities. But Carey helped my avoid that again today and we took a walk around the old Peabody campus-a lovely walk, lots of folks take advantage of it-and today I was able to maintain a normal pace, although my empty stomach limited the amount of time I was able to spend; I'm finding that when I'm hungry, it's critical to eat right away to stave off nausea and maximize energy.  I've got a pantry of snacks at my desk, but I think the dry crackers I tried this afternoon might have led to the heartburn. Gotta be careful about what I pick.  

I arrived home to my dog Xena panting at the door expecting her walk, and once I'd gotten some food in me, I obliged. It feels good to be getting this much exercise, still, I'm missing my yoga practice. My port, which I am very grateful to have, still pulls at me a bit and is irritated by my bra strap running right alongside it, and it's not 2 weeks since the surgery to put it in, so I'm still not cleared to put weight into my arms anyway. And I'm not sure how much of my head going up and down I'm going to be good with, so I will be careful when starting back to morning sun salutations. I want to start doing some Tai Chi again, though; I think that will be very healing.

I'm trying to decide if I feel energetic enough to do a few massages. I miss it,  miss my clients, and the stretching out that my own body gets from doing the work. But I don't want to over-extend my energy. Guess I'll have to continue to play it by ear. 
 
Wednesday, June 2, 2010
Wednesday
It was another good day. I woke feeling fine, wishing I could stay asleep just a bit longer, but my bladder and Dave's gentle snores dictated that it was time to rise a bit before the alarm went off. Work went well; my coworkers are so supportive,  and complementary about the haircut, too. I used to get frustrated and say "I'm just going to chop it off" and Gordon would tell me that I'd have to find someone else to do it; Dave would say "No you're not; you'd regret it", and so I never did. But I had a weird kind of premonition the last time that I considered it, looking in the mirror, fancying that it would be fun to explore a shorter do, then thinking that I had better enjoy the long tresses while I had them. In several ways, I had premonitions that this experience was coming. So far, not so bad. I'd miss it, though, given the choice.

I came out of the clinic today into a rain shower; grabbed my umbrella, but was soaked half way to the car. The air was warm so being wet was no problem, except for the little comfy slip on shoes I was wearing, which became so slippery I was forced to choose between the potential of falling or walking barefoot across the medical center campus. Chemo makes one leery of potential sources of infection, so although I'm usually happy to be barefoot, this was a big decision for me considering the current situation; I went barefoot to the car, then cleaned my feet with paper towels and hand sanitiser. Then washed them when I got home. Next time I go back for the umbrella upon leaving work, I also take the running shoes that I keep under my desk. 

The first batch of wheat grass is sprouting and should be ready for uncovering and greening in a couple of days. That's exciting. In the meantime, I sure am glad to have my Vitamix, helping me enjoy daily green smoothies. Funny the food cravings I've been having; burgers (have to be grass fed), cabbage soup, grapefruit.  Wheatgrass juice, when I get a shot at Whole Foods, feels like rocket fuel. Can't wait to juice my own. 
 
Thursday, June 3, 2010
This may be TMI
It's gratifying and terrifying all at the same time to know that friends and family are reading this; I swore to myself that it was going to just be whatever is going on, so that I can also use it as a reference for my symptoms when I report to the doctor, and today I must discuss constipation. So if you just don't want to know, skip this entry. I may regret this in the future....

This morning at work, I started having some very formidable low back pain-consistent, shooting, sharp, sometimes breathtaking. I slapped on a spare TENS unit and tried to ignore and work through it, but eventually noticed that it increased when seated and improved when standing. I did a lot of standing manual therapy today-not my usual. 

Finally, I started to assume that this was pain from Neulasta, a medication given the day after Chemo infusion to boost white blood cell count and thereby, immunity. Makes sense, and I'm glad to get the shot, but they say a side effect can be profound bone pain. My sister Janet reports that she had it during her treatment and that it was agonizing. So for a while, I just figured, well, I guess this is that. But bone pain wouldn't be improved with standing, stretching, walking....and be intensified when trying to eliminate. I finally said to myself "this is a pinched nerve". And I remembered that I have been pretty constipated over the last few days; surprising considering the amount of fruits and veggies I'm consuming along with whole grains, flax seed and the like, but these drugs have the rep for causing this. I started using a senna laxative the other day but it hadn't fully kicked in. 

After work, I went to see the chiropractor/acupuncturist and he fixed me up. I felt much better leaving his office, but still had some hints of the pain. Then things started moving. And they have continued moving. The pain, now at 9:30 this evening, is practically gone. Just goes to show how the body really wants every little thing to be working in harmony to feel at peace. I am much more peaceful now.

Another helpful moment of the day was learning the Tai Chi "healing walk" Qi Gong practice from our instructor Rusty after work today; I have practiced it a bit this afternoon and will begin doing it in the morning, and will do it as often as I'm able as it feels just great. I wanted some Tai Chi back in my life, and this exercise will give me a start back in that direction.  Trish, who is a friend, survivor and inspiration to me told me about this, and I'm thrilled to begin. Trying to fully learn the lessons of this diagnosis; fully intending to never have this diagnosis again. 

I refer to this "diagnosis" because my theory is that I am cancer free right now; the tumor was excised with wide clean margins, and only 2 of the 6 or 7 lymph nodes removed showed small amounts of cancerous cells. I believe my lymphatics  did their job and that the point of the treatment now is to scout out any stray cancer cells that may be lurking somewhere in the system and take them down. I see myself as a survivor already. And having a pretty nice life in between treatments, too! But I'll use all means to maintain that healthy, survivor status, and that includes meditation, massage, acupuncture, laughter, love, nutrition and a healing walk. And basking in the good vibrations I feel coming my way everyday. 
 
Friday, June 4, 2010
Friday
Oh yeah, no back pain today! Well, maybe a little, but not to speak of really. And blissful regularity. I'm enjoying every moment of this in-between time; next infusion, next Wednesday. Tomorrow, I play.

I have a lovely, busy Saturday planned. Farmer's market, errands galore, lunch with Trish; it will be grand. Then dinner with Dave and Grace and Billy-maybe I'll even have time to do some work in the garden. A productive weekend; next weekend, no plans. Well, none except for the fact that I'm supposed to sing at the Dayani Center's "First Annual Tree Planting Ceremony", and I am very hopeful that I will be able to pull it off. After that, no other plans. 

The wheatgrass is ready and I uncovered it today; it is gaining in greenness and shooting up-it's exciting. 

I had a funny moment the other morning-I got on my digital scale and must have hit some kind of calibration button or something. It read a good 10 lbs less than when I'd last stepped on it about a week earlier. I freaked-the first time in memory when I had responded negatively to a significant weight loss. I have lost quite a bit of weight since diagnosis, but it has been coming off slowly and steadily due to dietary changes. If I had suddenly lost another 10-that would be bad. But I stepped back on the scale, and it came up about 7.5 lbs. Two and a half pounds,  one week, that's okay. Sigh of relief. 

The only treatment related discomfort that I am having at the moment is this infusion port. It sits on my chest just to the edge of my bra strap, and it is the shoulder where I tend to hang my purse. I'm trying to stop that; the area of the incision from the installation of the port and the skin over the port itself are irritated and still not quite healed. It is quite uncomfortable. I'm starting to think I may need to let the doctor know, but I am hopeful that it will make progress this weekend. 
 
Monday, June 7, 2010
Great weekend
I am behind in my blogging because I have just been so darned busy! It's a good thing. I have been feeling just fine, and was able to enjoy a lot of social time and errand running this weekend, lots of cooking too, and just didn't get around to this. Today too kind of got away from me. So I will be brief tonight as it's about time to go to bed. Getting close to my next infusion time, and I have to do a 24 hour urine collection tomorrow. That should be great fun at work.

No meds this weekend, just the twice daily Acyclovir, but none for nausea or pain. My port incision still is a bit irritated, and the port itself is a bit uncomfortable, but not to the point of needing pain killers. A  homeopathic remedy seems to help, so that's what I used. I respond well to homeopathy. I did have a headache this morning, felt like it was sinuses causing it, and I took some herbal anti-inflammatories which took care of it. Had a really long work day and still felt fine; I'm doing better lately at keeping up with the paperwork. 

The wheatgrass is ready. I'll juice some in the morning after doing the "healing walk". Started the 2nd tray today. 
 
Wednesday, June 9, 2010
Infusion #2
Lots of meditation preceeded the day's event, and I was pretty calm. But not totally; I came pretty close to fainting this morning after having my "port accessed" and having blood drawn. Not sure what caused me to need to be laid back in my chair with a cold wash cloth on my head before I could stand up securely and go along my way. The nurse thought it was an anxiety based Vagal nerve response; the doctor said that a lot of folks with the port find that a blood draw from that area of the body, the vena cava, just leaves them feeling that way for a bit; the blood comes out fast. I will try to have them lay me back in advance next time. 

I was happy that I recovered quickly enough to go on ahead and go to work. It helped to distract me, and let me be ready to focus on myself later. Dave met me at my clinic at 12:30 and we walked across the street to the cancer center.  I had already delivered my 24 hour urine collection from the previous day (part of a research project in which I'm participating), and I had a 15 minute blood pressure test, which involves blood pressure checks of the tips of my index finger and a 5 minute squeeze to the arm (part of the same research project) before the chemo began.

The Adriamycin gives me the willies; it is not delivered via drip but must be pushed. It needs to go in very small amounts at a time, diluted by saline, and monitored by the nurse doing the administration. It has the potential to scar vascular tissue, which is why it is important for to be dilute, and why a little knowlege is a dangerous thing;  it is that knowledge that makes me so nervous when it goes in. I gave in to Atavan today. It helped. Now, though, I'm struggling to stay awake. I think I'll have to add details tomorrow. 
 
Friday, June 11, 2010
Day After Infusion #2
This was actually written yesterday, Thursday the 10th, but published today, Friday the 11th.  

I felt pretty good today; I'm not trying to fight the anti-nausea drugs anymore. I took a Phenergan to sleep last night, and a Zofran this morning along with my Emmend and Dexamethazone. I took another Zofran at about 4 pm, and I still need to take another Dex tonight along with an Acyclovere. 

It's difficult to keep track of these drugs; I've never been much of a med user, and usually then it was one, just one medication...easier to keep track of. Now it's several. Really hard to keep track. 

The dominant symptom I'm experiencing tonight is just exhaustion. I don't think I'm going to be up a whole lot longer. I was fine at work today, and hopefully will be so again tomorrow, but I'm having a hard time sitting here writing this.

I went to the American Cancer Society's Wig Bank today and picked out a pixie-cut straight haired wig-a fun do that I never had but would have killed for in my youth. They kindly give a patient a wig, and they gave me a stand for it, and a lavender turban. I have already send the part of my own hair that was cut off to a manufacturer who will make me an "Under Hair"-a piece that must be worn with a hat or scarf, but is made of my own hair. 
 
Saturday, June 12, 2010
Day 4 again
Well, it's true again this time-day 4 is the doozy. Of course, I haven't gotten to day 5 yet. I don't feel terrible today, just beat, like I've got the flu or something. Tired and achy, and in and out of sleep with occasional bursts of energy and appetite. Too hot to walk the dog feeling this way, so I've given in to a total day of rest, once past the commitment to sing a couple of songs this morning at a dedication ceremony for a tree our clinic had planted in Centennial park last fall. Billy played with me and although to say that the event was lightly attended is being generous, it was a treat to get to play with him, as always. Since I returned home from that morning adventure, however, I have been laying low.

There are sensations that let you know your hair is about to come out, I've been told, and I'm having them now. I'm also coming away with a crop of hairs whenever I rub or scratch my head. The strands seem to have become more wiry than usual as they lose their hold on my scalp. My head feels like it sometimes would if I had my hair up in a ponytail for too long, like all the follicles were being pulled in the wrong direction. There is a sort of electrical buzzy feeling, and a sense that my scalp has been pulled tight. These are the sensations that I had been warned about and feeling them now makes me hope I can get someone to buzz it all off tomorrow. I've got my wig at the ready; it's time.

I've heard people compare the chemo experience to pregnancy. Since I never carried a child to term, I can't really speak to that from experience, but from what I've heard about pregnancy, it sounds similar. I've been having odd food cravings: mayonnaise, greens, avocados, watermelon....nothing too strange, and nothing I really shouldn't have, but the mayo is surprising. I'm eating a lot, and I wonder if the anti-nausea drugs work partially by increasing appetite. I've lost about 14 pounds since my diagnosis, but that will not last if this appetite keeps up. I'm not concerned about it; all I care about right now is getting good nutrition, rest, exercise, and hydration. Weight loss is my last concern at the moment. I like my body and am fine with my size. 
 
Sunday, June 13, 2010
GI Jane
My latest "do" is a very military-style cut; I feel like Demi Moore in that movie GI Jane where she sports a crew cut. I know I flatter myself to compare to Ms. Moore, but I feel pretty good about how I look with a crew cut, and that is a surprise. I didn't expect to like the previous short cut, but I did, and got lots of complements. I'm pleased to discover my face in a way I would never have without the imposition of change that chemo has presented; I prefer to have hair to play with, but it's a relief to learn that I can feel good about my looks without it. I had always assumed that my face is too big, too round, for me to be one of those women who can carry off the bald look with aplomb, but I should not be so surprised: my sister looked just fabulous when she chose to sport her baldness in public. I am still finding the experience interesting.

It was kind of Jocylene to fit me in this morning. It was sort-of "emergency haircut" time, as I was shedding badly. It's much less upsetting to be shedding quarter inch hair than 1 and half inch strands. And it was comforting to sit with Jocylene and her friend in the sunny salon she has set up in her home basement as she cut with scissors rather than shaved my hair short. That kind of personal touch takes the edge off of this experience; it's not traumatic, but it is odd; my friends make it much easier.  

Felt pretty good today; had a busy morning with my haircut and some shopping and a visit to the Y. I will have to continue to plan my daily half hour of cardio pump for indoors as the weather is just too darn hot to spend it outside right now. Poor Xena is missing her daily walkies, but she had an impromptu puppy play date today as Dexter the neighbor dog escaped his yard and came for a visit. There ought to be a dog-friendly mall where folks can walk their dogs, but I don't know of any.  
 
Monday, June 14, 2010
Look Good, Feel Better
I took time out of the middle of the day today to go the American Cancer Society's "Look Good, Feel Better" program.  My day at the office was off to an awkward start anyway, and I was glad to take a break. All I'd been told was that the event would take place at the Sarah Cannon Cancer Center at Centennial Hospital. It was amazing how difficult it was to find the particular location within that huge medical megapolis. I did eventually find the group and was given a very generous package of makeup and a lot of great tips on how to fix myself up to overcome the pallor and lack of eyebrows and lashes that will result from chemo. So far, I've still got my facial hair, but along with my mane, it's dwindling. 

Once again today, I got a lot of positive input on the way I look with my crew cut. I had fun trying on a couple of wigs too; all with straight or straight-ish locks. It's so interesting to see my face framed by straight hair. I've never been much of a make-up user, but I did like the result today. I'll be making good use of the kit I received. 

I have been mainly un-queasy for the last couple of days and didn't even feel the need for any of the Zofran today. I did miss my afternoon snack because it was just too darn busy at the office, and I considered a pill during that time, but a ginger candy took care of things. An afternoon rainshower cooled the air and I ran home to walk the dog. A lovely day.

I feel really good right now; I wonder if it is the attention I'm paying to nutrition, or the amount of rest I'm getting, the meditation, the healing walk, the lowered expectations...I don't know what to attribute this to. I of course would prefer to be feeling this well without the chemo/cancer kicking experience, but here I am and I feel great. I'll take every good day with relish. Today is one of the good ones.  
 
Tuesday, June 15, 2010
Wiggy
When I was a kid, I loved to participate in theatrical productions; half the fun was the costumes and seeing myself look like someone else. Into my teens, performing at the Renaissance Faire, in all kinds of bands, doing the  twist with Hank Ballard and singing "When Something is Wrong with my Baby"  with Sam Moore, playing the songs from our own collection with Dave, so much of the fun was dressing up as the musical character I was playing that night. The wig makes me feel that way. I want more wigs. I'm sure the folks at the clinic will find it a bit strange to have me look a variety of ways...just showing up today in the short, straight, dark do of my current wig, had a number of folks say that they didn't recognize me.  (The same thing happened at the neighborhood block party tonight; they recognized my dog but wouldn't have known me without her.) Ah the confusion I can cause! Who will I  be today?

So the wig is fun, but uncomfortable. Not because it's hot-that didn't really bother me; my own hair was always hot-but the elastic band that holds it on digs into my scalp. I shouldn't be surprised-every pair of glasses I've ever owned has irritated the side of my head where they rest behind my ears. I've got to do some research and see if there is some way to work around this. Maybe when the rest of my hair comes out it will be less irritating; now the short hairs are tugged on by the elastic.

Another fairly high energy day today. Maybe not as high as yesterday, but good. Tomorrow I get a massage. Ah.... 
 
Wednesday, June 16, 2010
His and Hers head shaving
Today was just a wonderful day. The half day at work on the non-infusion day breezes by and leads to a wide open afternoon. Sharon gave me a fabulous and desperately needed massage; I felt so much better after that, I almost didn't want to go off to other activities but I had appointments to keep.

I'm glad that I did keep the appointments, too. I had reached the point of gross-out with the shedding hair and was able to get an emergency head-shaving appointment at the Rodney Mitchell salon in Hillsboro Village to have both Dave's and my heads shaved, sitting side by side, me being buzzed all the way, and Dave stopping with a crew cut at my request as I prefer to be the balder of the two at this time; it seems only proper, only fair. The stylists who work there and hosted the "Look Good Feel Better" program on Monday had mentioned that the salon offers these services on a complementary basis to cancer patients, but I didn't expect them to be able to fit us in at the last minute, nor to do Dave's hair gratis as well. It was fun, and my head feels much better now, and the wig much more comfortable. 

We did this on our way to a farewell reception to show appreciation for Dr. David Johnson, my husband's oncologist and the driving force behind the oncology department at Vanderbilt for many years, who is now moving on to Dallas. It was a lovely reception and it made me proud and excited to be part of the University Medical Center. Sorry to see Dr. Johnson go, though; he is well loved for a very good reason, and so many of us from patients to faculty to his colleagues will miss him, his humor, humanity and intelligence. I'm very happy to have his contact information and invitation to call him if I need him. It's very comforting.

I've been pretty diligent about avoiding white sugar and flour, and in general keeping refined foods to a minimum since my diagnosis-that's probably the main reason I've lost the weight. Some days, though, you just gotta live a little. We took a break in the village after our hair cuts and before reception and had pastry at Provence.  Dessert before dinner. Afterward, Ted's Montana Grill for bison burgers. Did I mention I'm hungry ALL the time? I'm keeping meat to a minimum (still only eating natural/organic/grassfed offerings) along with the sweets, drinking tons of water (no vino during chemo) and taking handfuls of supplements, I've quit coffee and drink lots of green tea daily, am doing wheatgrass almost daily-heck, I've just gotta push the boat out every now and then. Both the pastry and the burger were divine. 
 
Friday, June 18, 2010
Friday June 18th; hot and humid
Okay Kit, you asked for it; I have changed some of the look of this blog page and checked out Photo Booth again. I find it hard to take good shots with it, but there it is. So here are a couple of shots for you, but I'm not putting the wig back on tonight; it gave me a headache today.

I woke up with the headache, actually, probably from the pollen and mold in the air. I had it under control for most of the day, down to a dull throb in my left forehead, but late afternoon it really ramped up again. Taking the wig off helped, some homeopathic remedies helped more, and a large slice of watermelon kicked it's butt. I'm feeling better now.

Dave thinks the headache stemmed from me getting overheated today, and it's possible. It's in the mid 90s here right now, and although we have had some short, cooling storms each afternoon over the last few days, it was blazingly hot as I walked to the car after work this afternoon, and then Dave and I went out shopping for a couple of hours. Each time we got back in the car, it took a few minutes to cool down and it feels like the body banks some of that heat. I don't mind being hot, but the humidity is wilting. And whatever part of it led to the headache, I could live without that. 

Mouth sores are a Chemo symptom that patients are warned about; so far, I haven't had that, just the on and off oral neuralgia - mouth and tongue pain - that I have had for a couple of years now. It's actually been somewhat better lately. But yesterday and the day before I had some bumps inside my cheeks and lips...they sort of felt like warts rather than blisters...very annoying but not painful. But today they seem to be gone. Maybe it was an allergic reaction to something I ate. I'm sure it would be wise for me to write down everything that passes my lips, but so far, I haven't been doing that. Yeah, I really ought to. I might be surprised to see how much or how little of the foods I know are best for me I'm actually consuming. 

When I committed to the Chemo experience, I set my goals at a level I thought I could manage: go to work, walk my dog, write my blog. And I'm pretty much doing that, writing and dog-walking almost every day, going to work 5 days a week. And keeping a more active social life and more household activities than I expected to. So far, so good. I even got to do some massages the other night, which felt really good. I love my work. But I am definitely not as high-energy as I expect I would be were I not undergoing this chemical regime. Or maybe it's an over-50 thing. Maybe I've been under-rested for years and now that I'm giving in to the need, I'm more aware of needing it. Whatever. I had a few nights of not sleeping well (took half an Atavan the last 2 nights to help, and it did), but in general I'm getting a lot of rest. Will nap this weekend, in between gardening, cooking, housework, etc. 
 
Saturday, June 19, 2010
Saturday June 19th
The headache was at bay for quite a while, but returned this evening shortly before dinnertime. It has been pretty persistent since showing up and was unresponsive, so far, to homeopathics and Tylenol and the rubbing all kinds of points purported to relieve headaches and other bodily distresses.  Maybe it's a chemo thing. I don't know but I sure wish it would quit. Headon-I'm going to apply it directly to my forehead...and if that doesn't help, I may call the on-call doctor and see what they have to suggest.  Yipes.

Went to the Westside Farmers Market this morning and had planned to continue to run some errands but had the dog in the car and there was no shade to park in anywhere so I took her and the produce home. Went out again later and got some wig supplies-you need special shampoo for the synthetic hair-and I went to Pier One hoping to buy a parasol to keep this blazing sun off of me, but they didn't have any. I will have to just carry an umbrella for now, and order a proper parasol off of the Internet.

I spent a good deal of this afternoon just lying on my bed in the cool bedroom, ignoring another episode of the DVDd first season of Big Love which a friend was kind enough to send as part of a gift of a mountain of TV-series DVDs. Perfect background music for lazing around. I alternately tuned in to the program and read an Ayervedic cookbook that I would like to start exploring. Every new cooking tradition that I am excited by requires several key ingredients and techniques that I'm unfamiliar with and must spend time researching. Sometimes I wish I didn't have to work and could spend all day cooking. Often though, reading the cookbooks is more enjoyable than actually preparing the food. I'm just cooking for the 2 of us most of the time, and Dave doesn't always enjoy my experiments although he's always very sweet about eating what I prepare. 

Went to a small party tonight at the home of our friends Hilary and Rob; what a wonderful group of people. I am grateful to be able to be social right now; I wonder if my immune system will continue to tolerate public exposure. I hear that it should; if I can go to work, I ought to be able to go to the occasional party, and my docs will warn me if my white count gets too low. And laughter and joy are immune-boosting, and I had a lot of laughs and a lot of smiles tonight. Even whipped off the wig for a bit at Linda's request and got a nice head caress which felt great. Met a woman who is a practitioner of a number of non-western healing traditions and was very inspired and informed by meeting her. It was great to have gotten to go and spend some cool time in the outdoors that have been so inhospitable for the past few days. 
 
Sunday, June 20, 2010
Sundays go too fast
Sunday morning always looks like an open field, limitless and inviting. Sunday afternoon is always a surprise, as I become aware of the swift flight of the day. Sunday evening, back to reality. Gotta get up for work in the morning.

Not much to report today; I felt fine. Dave and I went to the Y and did a bit of cardio, then to Whole Foods for grocery shopping. Came home, made sun tea, took the car to the car wash, thinned the tomato plants, meditated, and did a lot of food prep. A long bath, a lot of trying to not think about Wednesday, and no headache. Horray.

On days when I'm feeling queasy, I just can't face taking my supplements, but today I am not. I took the handful of pills. I'll have to get up to pee at least once tonight. Lately it's been twice as I drink so much water and herbal tea late in the evening. Other than that, I'm sleeping okay.  

Happy father's day to all fathers. See you tomorrow. 
 
Monday, June 21, 2010
Manic Monday
It was a very busy day. Tomorrow will be, too. But you know, it feels good to be able to do it, to work that hard. Wig is still getting complements-I keep forgetting how different I look. Inside my own head, I feel remarkably the same, and tend to not remember that the package has changed and throws people off. I try to remember to introduce myself when I see someone I want to greet and who I think may not recognize me. But it's easy to neglect to do that, and to be set back a moment when I'm unrecognized.

Feeling well today. No headache, no nausea, no pain to speak of...just a little of my oral neuralgia, about a 3 on a scale of 10. Trying to avoid thinking about Wednesday.

I did start tracking my food yesterday. I think that may be informative. And I don't want to lose any more weight, but I don't want to gain either. It's helpful to have an idea of how many calories I'm actually consuming. The Livestrong website has an awesome food tracker-much easier to use, for me, than Weightwatchers was, although I did lose a lot with Weighwatchers online when I was trying to lose. But this one is free and quite user-friendly. I hope I can keep it up. If I would also track the supplements, I would be aware of everything passing my lips! But for now, that is too much. The day only has so many minutes in it. 
Thursday, June 24, 2010
The blessings of baldness
This was written Tuesday evening.  

This morning I went downstairs to let the dog out and a bug buzzed my head. I thought it was a moth that had come in during the night after flirting with the porch light when the door opened. I brushed at my head, brushed the bug 
 
Saturday, June 26, 2010
The day after the day before
This was written on Thursday, 6/24.

This time it got me right away. I passed out very early after coming home from the infusion last night, and don't expect to be up very long tonight. I'm queasy as I've been after the previous treatments, but not actively nauseous, just so tired. I'm SO glad I shortened my work schedule for Thursdays and Fridays. Tomorrow is a staff retreat event, so I have only 2 patients in the morning before the retreat, and if I feel too funky I'll back out of that, and just come home. 
away and noticed that it ascended on a thread, not wings. Whew...if I still had my mop of hair, it would have surely been tangled up in my curls and emerged later in the day to scare me, perhaps in the middle of treating a patient. Or I would have ended up with a spider bite...just what I need (not). I still think that the tick bite I suffered a year ago led to my immune system being weak enough for the tumor to get out of "in situ" status. 
 
Saturday, June 26, 2010
Swimming back up out of the miasma
This treatment was a doozy. I have been more subdued by this than either of the others. The nurses had warned me that sometimes the 3rd is the charm, and it seems that this is true in my case. Not only have I been tired, but I've been sore all over. Tender to the touch in the neck, shoulders, chest, breasts, back, base of my skull, jaw...my legs and feet are okay, at least. 

I did back out of the staff retreat yesterday; they went to Carnton Mansion, a wonderful historic site of the Civil War, where I have spent some amazing times, but I'm not up to the heat and the bugs at the moment. Hated to miss it, but needed the rest. And the continued rest into today. I did get out a bit this morning, I met Grace and Billy and went Farmers' Market hopping, and spent a couple of hours seeking shade and enjoying a lemonade sweetened with agave...delicious....but I crashed and had to head home. Spent the afternoon in bed, zoning in and out of consciousness and watching NCIS in the background. Aside from feeling so weak, it's pleasant to just chill out like this.

Once Dave got home, I took a nice hot soak in the tub, after giving myself a massage, and felt much less achy afterward. So we went out to dinner at one of our favorite spots-a little Persian restaurant in the neighborhood. As soon as we got there, a storm hit. Power flickered and went out for a bit, but came back on and we were able to eat our meal by electric lights. Got soaked running out to the car, but who cares-it's warm. On the way home, we passed limbs in the street, dodged traffic at intersections where the lights were out and narrowly missed driving into a half-downed power line in our street. Wouldn't that have been ironic? Death by accidental electrocution while on chemo? I made my first-ever 911 call to inform the powers that be. Hope nobody ran into it before the fire department got out here to fix it. 
 
Monday, June 28, 2010
Monday again
It was a really hard day at work. Not just for me, for the entire PT staff and the front desk. I'm not sure why...maybe because one of us is out sick, or because of some kind of energetic thing in the air, the storms brewing that slammed into the afternoon, something. One patient after another came in to tell me about the major challenges they are facing in their lives: a breast cancer survivor whose husband has been diagnosed with pancreatic cancer while her father is in the hospital for treatment for an acute infection and had become incoherent; a handsome young man in his prime who has survived a head on motorcycle crash and is relearning to walk while dealing with hardware holding his leg and back together; a woman in her 50s who has been suffering chronic pain since the birth of her daughter 21 years ago; another woman in her 40s who is recuperating from brain cancer and dealing with the ravages of treatment - as perspective on my own quality of life, I'm grateful for the stories I heard today. It makes for a very hard day, but I leave the office feeling grateful for my good health.

I know it sounds odd for me to say that, but I really do feel that way. So far anyway, I feel healthy. It was a rough weekend, but there have been years in the past where just the intense heat that we experienced this past week would knock me out. That would have been excuse enough for me to take the weekend off and lay in the cool bedroom watching TV. And it is a luxury to give in to extensive rest and hours of sleep; chemo gives me total permission for that. So comparatively I am well and this is a blip on my life experience. Every good day is a good day. Today was another good one, even if it was hard.

Okay, so I didn't feel so well this morning. It was brutally hot on my way in to work, and the air was not working in our office nor the treatment rooms early today. I was wondering if I was going to make it through the day during the morning, feeling vaguely nauseous, but by midday the air cooled and my energy improved. The queasiness that I feel so much of the time lately backed off and lunch revived me. Getting adequate nutrition and frequent enough food input if a chore these days, and some things are beginning to not taste as good...green tea for example, and spices have lost some of their potency. But a healthy meal feels good in the belly no matter what it tastes like. And once the icky post-chemo feeling diminishes, I begin to force feed myself the numerous capsules and pills that provide the supplementation I am prescribed by my doctor and that I desire based on my research and on the way I notice I feel after taking them. They make me feel better. And I feel pretty good. 
 
Wednesday, June 30, 2010
Alternate Wednesday
I love these alternate Wednesdays, like today, a non-infusion day. It's far enough away from the treatment that I'm feeling pretty good, and that the next one is still a week away with a potential for a lovely weekend in between. After this next time, the chemistry will change and there will be no in between weeks for 3 months. That will be a new adventure. I'll embark on it when I get there. 

I went to renew my auto tags after work today, the last day of the month in which it was due. The line for the emissions test was not long, surprisingly, but the line at the county clerks' office was brutal and the ceiling there is a skylight which amplified the already intense sun shining down on my head. I had to ask the folks behind me to honor my place and allow me to go stand in the shade as I was wilting.

I came home to find the screen porch project nearly done; we finally, after 12 years in this house, decided to screen in the back patio. I'm so excited. Xena even used the doggie door, which we installed to allow her to enter and exit the screen room on her own, tonight without prompting. I'm proud like a mama, as she is so slow to try new things. She took 2 years to decide to use the one in the house.

Feeling great today after a lovely massage this afternoon-oh how I needed that-only a vague headache right now. It's about time to go to bed anyway. 
 
Friday, July 2, 2010
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. 
' 
Saturday, July 3, 2010
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. 
Monday, July 5, 2010
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. 
 
Tuesday, July 6, 2010
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. 
 
Thursday, July 8, 2010
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. 
 
Saturday, July 10, 2010
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. 
 
Wednesday, July 14, 2010
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. 
 
Friday, July 16, 2010
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. 
 
Sunday, July 18, 2010
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. 
 
Friday, July 23, 2010
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. 
 
Friday, July 23, 2010
Photo from trip (see below this blog post)


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. 

 
My own hair (see below this blog post)

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. 
 
Thursday, July 29, 2010
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. 
 

I received a request today to share an interesting article on this site, and I realized that the blog is the only place I currently have to do this, and I liked the article, so here it is:
https://www.bestmattressreviews.com/massage-and-sleep/

I myself struggle with sleep and find that the massages I receive from the various therapists I see are helpful. Other practices, such as avoiding stressful stimulus before bedtime, making sure my bed is comfy and my pillows are appropriate and that my room is quiet and dark-these things too assist my ability to get to sleep, and especially to stay asleep, or return to sleep after waking to use the restroom. 

And I need to do that for sure, because I tend to drink warm milk or Yogi-brand Bedtime Tea before turning in. Very soothing. As is the use of certain topical applications; I really love using a CBD rub to calm my irritated nerves, moisturize my skin, and give myself a gentle massage as I lie in bed to ready myself for sleep. 

So this unexpected article that landed in my inbox is informative. If you'd like to know more about my own practices and my work with clients in regards this matter, shoot me a message and I'll be delighted to discuss it with you. Lymphatic massage is a very rhythmic and soothing technique; it can really help. I'm getting sleepy just thinking about it! ;-)

Stores were open again today in Barcelona and traffic cruising the streets. Aside from the 10 PM clanging of pots and pans for 15 minutes, no overt displays of pro-separatist sentiments were noted by me as I resumed my basic duties as a tourist, visiting the Picasso museum, paying a fortune for a bowl of soup in the Gothic Quarter, riding a double decker bus around town. A full moon peaks between the clouds over the Ramblas, and I suspect the citizens are holding their collective breath as they wait to discover on Monday if Independence will be declared. I must admit that based on what I've seen of the reactions of the central government here, I am glad I will be back in Tennessee at that time. 

But oh, how I hate to leave! Isn't there some way I can find a life here? Any room for an old American massage therapist? A private lymphedema therapist to the English speaking population? Any ideas are welcome; I love my life in Tennessee, but have yearned for a time of living in another culture. An experience my husband had in his teens; I have only ever been a visitor. 

At this time in world history however, it does not seem an auspicious time to dive into ex-pat living. But if not now, then when? 

Tonight we ate dinner at a sweet little restaurant and strolled back along the rambla. One of the best ever meals. 

I can't keep walking the streets with the protesters...I'm exhausted. And the scenes from the balcony of my hotel are totally worthwhile anyway. Thank goodness for the 24 hour Tapas bar here...I have been using it for lunch daily and will probably have to dine here tonight as well, although among the few businesses that are open today, most are eateries. 

I'm struggling to get my iPhone pics to the computer...not sure why that happens sometimes and not others, but I will post some shots here once I have access to them. This is what democracy looks like...I repeat over and over, and although this fight is not directly mine, I feel it deeply personally as the works is so blatantly and widely divided these days. I had a very interesting conversation with the young ladies at the front desk of this hotel one of the past few days, and they expressed the opinion that technology is benefiting citizens in exposing the deceits and failings of government; I contended that it is also creating an opportunity for democracy to be subverted...see November 8th USA as a day in question, for example, when Russian technological intervention is still potentially a factor in our current administration. I enjoyed hearing the thoughts of these young women, and they stated that they also appreciated my perspective. I really need to have more young people in my life! 

The opportunity to talk and walk with people of all nationalities and ages on this day is invigorating. I know I won't easily forget it, but have the benefit of technology to help me remember the sights and sounds. Hopefully, no one will be able to tamper with my own recordings. And it remains to be seen if I will interpret the events of this week differently after the passage of some time. For now, I approve of the right to vote, and the right of citizens to not be attacked by their own police forces! 

The general strike is happening; thousands in the streets all over Catalonia, including the firefighers, students, children, the elderly, the local police...a moving site. The busses and trains are on severely limited schedules, the parliament is closed. We are still in our hotel at midday, not on the winery tour that had been scheduled for today and that is goos as we have seen video of highways blocked, and Spanish flags being torn down off public buildings. I think we will stay with our local area today. I am hopeful that perhaps the tourist buses will be running, but we'll have to get down to the plaza to find out. Its a short walk, alongside the young people draped in their Catalonian flags. 

My American friends are leaving today and I have another couple of days to try to experience the museums and monumental sites. My friend encourages me to stay safe but "have loads of fun". Interesting what one finds "fun"; Webster's primary definition of the word is "what provides amusement or enjoyment;  specifically  :playful often boisterous action or speech  

• full of fun"

to me, this whole experience, from the educational aspect through the plans interrupted  by political activity, has been priceless, a privilidge to experience, enjoyable in a primal way but fun, no. Fun is what happens when I hang out with my friends and play games, laugh with family, go to an amusement park or craft fair...fun is a light thing. This is something altogether different. I would not trade it! I am grateful for it, and feel that my life will be better for having had this experience. But fun, no, it's not that. 

It will be ironic if we end up returning to Nashville without seeing the main sights, but it will be okay. We will have to return to Barcelona. I'm okay with that requirement. 

What  an interesting 24 hours. No game at Camp Nou, at least not for us to view yesterday. The football club tried to cancel altogether and the League would not allow it. The opposing team, just to throw fuel on the fire, had special shirts made for the game that bore a small Spanish national flag, and the Barcelona team marched onto the field in a shirt bearing the stripes of the resistance before changing into their regular uniforms. But we were not there to see it; the game went on "behind closed doors", not even shown on TV unless I suppose one had a subscription to it? Over the course of the day, hundreds of Catalonians were brutalized by the Spanish police in attempts to vote; the scenes on local, national and international television were horrifying. I decided to experience a traditional Hammam in effort to calm myself and find a new way to allocate the time. 

That too was a unique experience; the Turkish baths here are co-ed, with all wearing "bathing suits", which for many of the young women were simply thongs. Many young couples were not openly engaging in coitus, but were quite openly petting. Not what one would find in the US, I think, but again, I was under no threat and it was interesting. 

Tomorrow we had been scheduled for a wine tasting day in the countryside of Penedes, where there are Cava wineries, organically producing the local bubbly, and I was eager to learn more about the stuff, but now there is a general strike declared. It is not expected to be safe on the roads, many wineries and restaurants will be closed and we will not be going on that journey after all. I don't know what we will find here in town, whether busses will run or if museums will be open, but somehow it will all be interesting, I'm sure! May we all be safe. 

Although I managed to sleep through it, helicopters kept the town on alert through last night. As we traveled to a concert at the Palau de la Musica Catalanes through drizzly streets, our cabbie dropped us off a half mile from the venue due to police closure of the way to our destination. Supporters of Spain marched with their flags and banging drums to protest the vote scheduled for the morning, and I found myself limping with the wrong shoes and my heart pounding with anxiety that something would break out in the streets and we would be in the wrong place at the wrong time. 

But it was all well; some bandaids allowed me to walk adequately, a light dinner and convivial conversation with another English-speaking traveler and a mind-blowingly beautiful concert both visually and audio-ly sent us strolling through busy streets back to the hotel. Through the bar crowds of the Barri Gotic, and the Passig de Gracia we wandered to our home for the week. I recommend the young Spanish-style guitarist Ali Arango, who moved me to tears with his encore version of Brouwer's "A Day In November". One of the most poignant musical moments I've ever experienced, I hope he will come to the US. 

Today we are horrified to watch the police action trying to control the local vote. I have not witnessed any of the violence personally but it is all over the news here and the tension in the streets feels as though it could turn at any moment. "May you live in interesting times" they say, and these sure are those! Now we head out to the game at Camp Nou and hope the only conflict we will see is the sports match. 

Wednesday, 9/27/17 Barcelona, Spain

Truly, this city is unbelievable. And the conference is blowing my mind! I realize that I have to reconceptualize how I do my work and what I share with my clients. But once again, I am too tired to write it. 

This week, as Catalonia protests the Spanish government's attempts to quash a vote on independence, is an exciting time to visit the region. As we ate a sublime al fresco dinner at a lovely local restaurant sitting outside on a corner lit by antique converted gaslights, the locals clanged their pots and pans from 10 to 10:15 pm to protest the Spanish government's control and declaration of illegality of their vote. We joined in with the neighborhood and our fellow diners, tapping our forks on our plates for several minutes. I know the audio recording of that moment will be a vivid reminder of our evening. 

One more full day of the conference, then we will move into the main part of town to join the tourist throng in the area of the Plaza Catalunya. But I have enjoyed the suburb, Les Corts, far more than I would have imagined. I never want to return...viva Barcelona!
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Tuesday, 9/26/17 Barcelona, Spain

I am in Barcelona! A city I've dreamt of visiting for years and a conference that I have planned on attending for months. Dave and I arrived on Sunday, and are now, late Tuesday, getting over jet lag and starting to really enjoy this environment. I don't know how I will be able to return to the states; the air, the architecture and the Mediterranean climate are so primal to me. This reminds me of my roots in California and the early days of my marriage by  Venice beach. 

And that doesn't even mention the conference! The purpose of my trip. I am here along with friends I have made over the past several years as a CLT attending conferences in the US, and with some therapist friends from Nashville, and hundreds of other "lymphomaniacs" who are sharing new discoveries and working together to move the field of lymphology forward.  

Much as I want to write of this experience, I am too tired to do this now. I hope to blog throughout the journey, and will try to write in more detail tomorrow. For now, to bed. 

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