This diary was begun to keep family and friends as well informed about the progress of my treatment as they wish to be. Since I have an interest in matters medical and it was also written for my caregivers' information and my own future reference, it has become more and more technical over time, and because I came to the conclusion that my perceptions could possibly be of help other breast cancer patients, I have included perhaps too much about financial issues in treatment.
We may (and, I think, do) have one of the best, if not the best available medical care systems in America, but if one cannot afford it, that makes no difference. Fortunately, there are steps that most retirees and some working women can take that, in my misplaced confidence in my genes' ability to trump environmental carcinogens, I did not take when I should have. It is my hope that my experiences may provide a cautionary tale in that respect.
If I were witty and funny, you might read this for amusement; since I am prosaic, instead, please feel free to take from this what interests you and ignore the rest. I will not be insulted.
As you know, I chose not to have implants after my surgery, although Medicare does usually cover them after mastectomies. As you also know, I am unhappy with the scar tissue and unexcised tissue left behind, but I thought Medicare would not cover the plastic surgery to correct that, so I called the Dartmouth-Hitchcock number for cost estimates, thinking that I would then save up the money to have it done. They referred me to the Plastic Surgery Department, where the receptionist told me she thought Medicare would cover what I had in mind and suggested that I go in to see Dr. Videl and let her see what she thinks. So now I have an appointment to see Dr. Videl on October 19.
I am particularly pleased that I may not have to wait until I have time to save up enough, since I seem to be healing well now, and that may not be true in another year or two.
Dr. Rosen seemed pleased with the progress of healing of my incisions, yesterday; the "black hole" is nearly filled in, and the surgical glue on the left has begun to peel off.
For many weeks, I have been puzzled by things that seem to be related to chemotherapy that ended months ago: Thinking they would be more comfortable (the sandal strap crossing my little toe had been very painful the previous evening), I wore closed shoes to the concert at Marlboro Saturday evening. in fact, every step that caused the toe of the shoe to flex proved equally painful, and I finally realized the pain was related to the weird sensation/numbness I've experienced in all my digits since my nails started turning black.
Yesterday, I displayed my disfigured fingernails to Dr. Rosen and told him how puzzled I had been. (I had expressed the same puzzlement to Drs. Nickerson and Liebow and both shrugged it off as a side effect some people experience). Dr. Rosen urged me to talk with Dr. Nickerson about it again but mentioned an "oncology for surgeons" tape he had listened to that referred to nerve damage caused by Taxol. I plan to bring that up with Dr. Nickerson and Agnes at my September appointment, but in the meantime, I went to the Web and Googled "taxol nerve damage." LOTS of hits, one of which was from a woman who reported experiencing pain from peripheral nerve damage beginning days after her chemotherapy ended. One woman reported pain that "even Lyrica" didn't touch, although that had its own unpleasant side effects. Some reports seemed to be saying that it was irreversible.
I felt so sorry for Eddie when he was diagnosed with peripheral nerve damage from Type II diabetes because it made it so hard for him to play the piano and access the emotional release of music (since my stroke, I know how hard it is to have so little control over my own vocal chords, and thus be denied the same emotional release from singing). However, when he talked of pain from trying to play, he seemed to be talking of bruising from striking the keys in an uncontrolled way, not of pain from the peripheral nerve damage; this gives me a whole new appreciation of what he may have been suffering.
I understand that physicians cannot be expected to know what is most important to their patients and thus what they most need to know, but this one, it seems to me, should be emphasized rather than shrugged off.
Last night, I was watching a breast-cancer special on Deutsche Welle, when they referred to the examination of blood for cancer cells; they said the type of cancer cell could not presently be determined, but the cells' presence could be and indicated that cancer-cell-free blood means little or no likelihood of cancer in the body - although I wonder what volume of blood the pathologist would have to examine for a definitive report.
Maybe that's why Dr. Nickerson did not mention this, or maybe Medicare doesn't cover blood pathology.
I saw both Dr. Nickerson and Dr. Rosen, today.
Dr. Nickerson told me that my chances of falling victim to another type of cancer are what they would have been if I had never had breast cancer, but I forgot to ask him if he could tell me why the chemotherapy didn't do its job, i.e., destroy all the cancer cells. I doubt if he can, anyway, but if I had known before I began chemotherapy that I would have to have a mastectomy, anyway, I would have avoided all the injuries caused by chemotherapy--some of which may never correct themselves.
Dr. Rosen discovered that the staining was being caused by necrotic tissue that didn't have enough of a blood supply to support it. He removed the necrotic tissue and wants a nurse to change my dressing daily at least until I see him again next week.
In the meantime, he wants me to wait until after it finishes healing to resume physical therapy.
He also told me that I could expect to have regained about half my pre-surgical stamina six weeks post-surgery (July 1) and the rest in another nine months to a year and to take it easy in the meantime. (Dr. Nickerson indicated that there is an analogous recovery time after chemotherapy; I will be seeing him again in 3 months and then in 6 months.)
My hair is growing in salt-and-pepper, alas, but now it's long enough to be soft, and it's all growing toward the crown of my head, giving me a Kewpie-doll-like coiffure.
I seem to have reached the time of life when people sit in the sun for warmth, and unfortunately, there's been very little sun for the past few days, so I'm cold most of the time; I've had to put on wool knee socks and wrap my head in a blanket to be able to sleep.
My fingertips and toes are still experiencing the weird, chemo-caused "numbness" and tingling that I associate with my nailbeds ceasing to produce nails, although the nails are all growing out. The remaining nails look very ugly, because they're no longer held to the curvature of my fingers.
From my left
From straight ahead, showing un-excised breast tissue (black hole to the left)
Speaking of ugly, my surgery left my right breast looking fairly hideous, because Dr. Rosen did not remove all the breast tissue on that side. (It looks kind of like he took a pair of scissors and chopped off that breast rather than do the neat job I expected from him after all his references to skin-sparing and nipple-sparing mastectomies.) He covered the resulting wound with surgical glue, which makes that side look like there's a black hole where my breast used to be, and either the glue is being melted bit-by-bit in the moisture on my skin or the wound is weeping a bit, because my nightgown is always stained in the morning over the "black hole," and whatever the stain is, it smells of a sulfur compound. I'm thinking that anyone contemplating this surgery ought to look up the protocols and show her surgeon exactly what she's expecting.
Dr. Rosen removed the bandaging and drains. It was painful, but bearable. He re-bandaged the drain holes and told me to replace the bandages with bandaids after I shower and leave off the bandaids once there is no further drainage. I will see him again on Tuesday, June 1, at 11:30 a.m., when the pathologists' report should be available.
In visualizing the surgery, I was going by the diagram in the book Kelly gave me, which showed a vertical incision similar to the one shown at http://www.healthcentral.com/breast-cancer/surgery-33785-3.html?ic=4031. However, Dr. Rosen seems to have opted for a protocol more like the one shown at http://www.stephenmcculley.co.uk/1_breast_reconstruction/1_breast_cancer_surgery/2a_diagrams/index.html. If I had chosen to go with bilateral mastectomy for reasons of vanity, as one of my friends seemed to think, this would not have been the right way to go. Of course, it will look different once the scars have had time to heal more.
In the meantime, it feels fine. AND I don't have to wear a bra. AND I never have to have another mammogram. AND no one will try to persuade me to have radiation treatments.
However, I think I'll go along with Dr. Paasche's urging that I have a colonoscopy.
Hi, I'm Ed, guest posting while Pat's recovering. She had the surgery early this morning and all went well. Here's a picture of her resting but wide awake and alert!
She'll give a full update herself tomorrow when she's home again!
I got my blood drawn, yesterday, and today will be the injection of dye to highlight (or rule out) any right lymph-node involvement followed by picking up our plants that were started for us by Sarah at the Windsock greenhouse in Swanzey; the rainy weather should be making the poppies and Kelway daisies Tracey put in yesterday flourish. The lilacs are almost by, but my old-fashioned fern-leaf peony has started blooming.
Signe will be arriving this afternoon. I probably won't be adding to this until Saturday.
Yesterday, Dr. Rosen and I agreed on May 20 for my mastectomies. I can't say he's enthusiastic about it (understandable in a surgeon whose whole training and career history has been directed toward preserving as much breast tissue as possible), but he's not fighting me about it.
When I saw Dr. Passche subsequently, she was as supportive as every other woman I've discussed it with. Dr. Rosen wanted to be sure that she thought I was physically able to withstand what will probably be a 2 1/2 hour surgery and to give her a chance to order any pre-op tests he hadn't felt he needed. (He may ask his partner, Dr. Gadowski, to assist him, which could shorten the time.)
As I did after my first lumpectomy, I will have a drain to prevent potential seroma (fluid accumulation under the skin, which would prevent the skin from attaching itself properly to my chest wall). Most drains are not needed after the first week and may then be removed, but there is a possibility of persistent seroma, an unpleasant prospect that Dr. Rosen doesn't anticipate but felt he should warn me about.
If the skin does not reestablish blood flow quickly, there is also the possibility of necrosis, another unpleasant prospect that Dr. Rosen doesn't anticipate but that can't be ruled out until healing takes place. I will most likely go home after the surgery, but there is the possibility of my being admitted if I'm not feeling up to it. We'll have to wait and see.
Dr. Rosen has agreed to have dye injected in my right breast to highlight any sentinel lymph nodes that may be involved--not that either of us expects any positives.
So I'll have to postpone my trip with Signe to Olympia.
Both my cousin Carrie's friend Kay and Susan's step-mother Holly told me they had no regrets about having had bilateral mastectomies, but Kay had regrets about getting implants, and Holly seems to have had a really bad time with reconstruction and implants--mostly, it seems, because she had already had radiation beforehand. Both of them had turned out to have more involvement in the second breast. Kay's was two years ago and Holly's five.
Dr. Rosen said that the participants in the tumor conference, yesterday (he, Dr. Nickerson, Dr. Levene, Kelly, and maybe others) had not felt that a bilateral mastectomy was inadvisable, although they expected that the daily Tamoxifen I am taking would eventually destroy any neoplasm. He was pleased that I will be seeing L.C.S.W. Janice Malin, tomorrow and suggested that I confer with Dr. Paasche about my ability to withstand the longer surgery (although he doesn't expect it to be a problem, and neither do I). Dr. Paasche returned my call later, and I'll be seeing her next week, as well. So we can work on scheduling next week.
This morning, Dr. Rosen told me that the pathologist had discovered that, despite the chemotherapy and a month of Tamoxifen, there are still cancerous cells in the medial area of my breast. This is disappointing not only because it's likely there were other cancerous cells that the pathologist didn't find but also because it means that I need further surgery. The question is: Should I have another lumpectomy with possible reconstructive surgery followed by radiation or a complete mastectomy?
For years, I've been hearing horror stories about plastic surgery, reconstructive and otherwise on breasts, so I'm not inclined to consider that anything I want to subject myself to, nor am I sanguine about the prospect of radiation. Dr. Rosen feels that my most recent surgery healed very well, despite the chemotherapy, but he says that would not be the case after radiation. On the other hand, however, eleven years of hemiparesis leaves me extremely reluctant to add yet another element of asymmetry to my physique.
As a consequence, I have asked Dr. Rosen to discuss with his colleagues the advisability of a bilateral mastectomy for me. My understanding is that most women who have that procedure do so either to reduce very large breasts or prophylactically, for reasons of genetic predisposition to cancer.
I have another appointment with Dr. Rosen next Tuesday to find out what he and his colleagues recommend in light of the considerations above. Whatever they recommend, he feels that any surgery should be done sooner, rather than later, so the hematoma produced by my latest surgery hasn't had time to turn into scar tissue and distort my breast to the point that he won't be able to find the area of involvement with any precision.
I've asked Breast Care Specialist Kelly McCue to get me in touch with someone who has had a bilateral mastectomy. In the meantime, she has suggested a social worker, Janice Malin, to discuss the issue with, and I've put in a call to Dr. Paasche for the same reason.
At this point, two months after my last Taxol treatment, I'm feeling fairly human again, and have enough energy that when (P.T.) Vicki did a Tinetti assessment, I had improved enough to be almost into the "moderate" category when it comes to risk for falls and was able to walk 252 feet in 6 minutes without resting vs. the 180 feet in 6 minutes, including a 1-minute rest, I was capable of a month earlier (one month after my last Taxol).
This morning, I reported in to Outpatient Surgery at 6:30 a.m., and was ready to go home by 11. Dr. Rosen will be at a breast surgeons' convention in Las Vegas next week, so I won't see him until May 3, although if the pathologist's report comes in earlier, Kelly may be able to tell me what it shows.
Maybe he will see fit to remove the Medi-port then; Dr. Fuller, the anaesthetist, used it for my anaesthesia, because my veins refused to cooperate, and no one was able to get an IV into one.
I have a Rx for oxycontin if I need it, but so far there has been no pain; I can feel that the surgery was done, but that's all. By bedtime, there was still no actual pain, but there were twinges - especially when I turned from one side to the other. The post-surgical bra is not tight enough.
It's been over a month since my last taxol infusion, and I'm beginning to feel human, again. Food mostly tastes edible and I can see well enough to read - and enjoy the spring flowers!
My nails are mostly black, and that's going to take a while to correct itself. (Dr. Liebow says only my left great-toenail has separated from the nail bed, but the new nail is actually growing.)
The rest of my hair (including my eyebrows) has mostly fallen out, and most of what's coming back in seems to be white, although since the top of my scalp seems to be tanned and, thus, darker, so it looks darker on top.
My daily routine includes a Tamoxifen tablet in addition to my other pills, a KCl horse pill morning and evening downed with something pudding-y, and exercises.
Yesterday, I went down the 30 stairs to the pool and around to the other side to see my daffodils. As you can imagine, I was exhausted, but triumphant, by the time I got back inside. With my birthday Amazon gift certificate, I've ordered a Medline Rollator walker that is very light-weight and easily foldable and has an adjustable seat where I can rest during a walk if I need to.
I had a mammogram on Friday, in preparation for my appointment with Dr. Rosen on Tuesday. The radiologist didn't see the fluid sac he expected at the site of my lumpectomy, so he asked for a sonogram, as well. He didn't see anything alarming, just unexpected. We'll see what Dr. Rosen thinks about it.
In the meantime, when Julie had me lying on a roll to stretch my left side, the floating ribs on my right side hurt. I'm hoping it's not significant, but I'll ask Dr. Rosen what he thinks.
I've also been hearing ads by Novalis for non-invasive cancer surgery and targeted radiation therapy, but Dartmouth-Hitchcock is not one of the providers listed on their web site.
Dr. Alfred thinks the problem is dry eyes. He's given me an elaborate schedule of eye drops to be administered.
I had lunch with Maria Ruggiero. It turns out that she's originally from Weymouth and is a Tennessee walking horse fan. Nick, in whose barn she keeps her horses, donkey, Jersey cow, and miniature pony, probably suggested she call me, and I'm planning to take her to the next Guild meeting.
I have appointments with Dr. Alfred on the 25th and Dr. Nickerson, on the 30th.
Friday (2/12): Left 106/72; pulse 84 . Right 124/82; pulse 100.
Today, I had an excellent visit with Dr. Paasche; even Mel was positively impressed with her. She suggested Ondansetron (Zofran) to control queasiness, but when we got to Rite-Aid, they wanted over $200 for 40 tablets. so Mel got only half a dozen to try it out. Costco sells 30 tablets of the generic version for $19.52, so I've asked her to send in a prescription to them.
My initial trial with Zofran is not an improvement over Ativan, but we'll see...
For years, I have been anxious about protecting my liver, in view of the cholecystectomy in 1963; Dr. Paasche reassured me that once the inflamed bladder and stones/sand are removed, there are no further effects. That was a propos my reluctance to use Tylenol. She says she knows of no example of less than 4 mg Tylenol in 24 hours damaging a liver, and potentiating Ativan for my back pain with 435 mg. Tylenol would not cause problems.
She agreed to arrange this week for me to see a podiatrist about my nails, all of which are so painful that clicking-and-dragging is even harder than typing.
I neglected to bring up the issue of my thyroid (I had been prescribed Thyroxin decades ago, but without blood tests to fine-tune the dosage (as Signe and Ted are having done) I gave up on it. Maybe it's time to try, again.
Blurred vision: My vision has become increasing blurry, throughout my chemotherapy, to the point that I can't read TV captions, so I've made an appointment to see Dr. Alfred on Thursday.
Recent reports indicate that natural Progesterone is effective in healing brain damage. Since some of my drugs are anti-progesterone, I wonder whether chemo has stopped the healing in my brain.
Agnes wants me to get a new bone-density test. Maybe she's thinking Boniva or Reclast, but not the drug that's causing broken femurs, I hope.
Blood pressure & pulse:
Friday (3/5): 110/83, p103. 120/82, p97.
Saturday (3/6): left 105/64, p. 79. Right 115/79, p. 87/
Sunday(3/7): 124/75, p81; 142/81, p. 78
Tuesday: (3/9): 95/59, p98; 107/68, p. 89/
Brian says,
Toenails can take up to 9 -10 months to replace themselves, although the new nail is often well established before the old one is shed, so the replacement period appears much less than that. A nail grows from well under the base of the nail and you cannot see it. A bit like an iceberg beneath the surface of the ocean.
Dr. Paasche's office did take care of my Rx, and Agnes persuaded Rite-Aid to refill my Oxycodone Rx, so I could sleep despite back pain. And I seem to be doing better this morning.
Left 132/91; pulse 82. Right 129/88; pulse 88.
Yesterday, Miryam took me in for blood tests and saline reconstitution. The blood tests were pretty much OK, but Agnes says I should not hesitate to go in any time I'm feeling weak or dehydrated. This morning, my blood pressures and pulses were: Left 115/92; pulse 101. Right 106/84; pulse 104. I've looked up normal values for women's pulses and found nothing helpful. As a child, my pulse used to be around 45, so ~100 sounds high to me.
Big Toe Nails
Right Index & Middle Fingers
As you can see above, my big toenails are turning black, and my right index fingernail looks like it's beginning to, as well. As a consequence, clicking-and-dragging is somewhat painful. I don't know how long to expect it to take for the nails to fall off and replace themselves, and Dr. Paasche's office has been unresponsive to my request for a referral to a podiatrist. I hope her assistant finally phoned in my Detrol Rx, yesterday, although I've received no response.
They X-rayed my back, yesterday, and found the oldest crack on vertebra T14 with two more recent ones (with signs of beginning to heal) on L1&2. There was no evidence of any further breakage on my hips and pelvis, thank goodness!
Doug and Randy put up some railings for me in the garage. I was actually able to pull myself up off the toilet, this afternoon. I've called to get an X-ray tomorrow when I go in for my CBC. Andrea and I have a kirtan singing class on May, rather than March 8.
Friday p.m. Left: 86/62 pulse 68. Right: 112/72, pulse 103The back pain from my fall is not as bad as some I have experienced, but it makes it hard to get in and out of bed. My KCl powder finally came through this morning.
Left 120/89, pulse 80. Right 133/86, pulse 87. Fingers tingling. I think I should have some, but not too much saline, today.
During my preliminary conversation with Dr. Nickerson, he confirmed that while it is infrequent, nails do sometime lift off nailbeds during Taxol treatment.
I told him about my narrow escape from the KCL horse pill last night; (I didn't actually need Heimlich, but it was a near thing), so he offered to write me a prescription for the powdered version, but when we got to the Rite-Aid, it wasn't there. Agnes just now told me it went to the CVS in Winchester, MA, instead of the Rite-Aid in Winchester NH, so she'll correct that.
As my last bags of saline and KCl ran out, Kelly McCue appeared standing in front of me, with a Barbara on either side. A mortarboard appeared on my head and a beribboned diploma (below) in my hand, as "Land of Hope and Glory" played from a graduation card!
As soon as I get the pix Kelly took, I'll post them on FaceBook.
Alas, when we got home, I fell backward off the first step - flat, not twisted, so it could have been worse. Eddie and Mel dragged me out from under the rear bumper and got me up. I'm sore, but not too bad. Eddie is going to have railings and handholds installed.
Blood Pressure - Left: 131/88; pulse 82. Right: 126/84 pulse 80.
cMy eyebrows have nearly disappeared, and I'm wondering if the Taxol affects nail beds. My big toenails seem to be lifting, and now I notice that it is somewhat painful to scratch with my right fingers or to pick up anything with them, using my nails to grip. Otherwise in good shape-until my final infusion tomorrow. I'm planning to go to the Selectboard meeting, tonight.
Blood Pressure--Left 153/99 ; pulse 97. Right 145/89 ; pulse 85.
It turns out that the thing that helped my knees was CVS' store-brand Air-activated heat wraps. They stay warm all night and don't reek of camphor, one of my least favorite odors.
Today blood pressure--Left 119/76; pulse 89. Right 138/77; pulse 81.
I've been feeling queasy and achey just about all the time-but I have only one infusion to go! I'm trying to hold on just two more weeks and hoping the pills aren't as bad. Arrgh!
Blood Pressure: Left 121/76; pulse 84. Right 130/75 ; pulse 92.
My third Taxol infusion has been much less miserable. I'm constantly thirsty, not nauseated, and Agnes is making sure I get saline every day my blood pressure is low.
Before she left for Tucson, Andrea led me through some more yoga. My left hand has opened up amazingly!
For the past several days, I have been drinking everything I can get my hands on, although my appetite remains less than avid. My blood pressure has been moderately low (125/89, today), so I'm still not taking Lisinopril.
I'm hoping Andrea can find some time for another yoga session with me before my next infusion on Tuesday.
Everything I have swallowed since my last infusion has made me feel worse--including liquids. I called Agnes, yesterday, and she had me go in for blood tests and gave me IV saline while we waited for the results. Hospital regs prevented her from leaving me alone while she took the samples to the lab, but fortunately we had Kate with us, and she did it. They again remarked on my reconstitution as the saline went in--speculating idly on whether it might blow me up enough to burst. After two bags, I was feeling steadier. When the blood tests came back, they indicated only dehydration--which can cause kidney problems; red and white blood cells fine; blood pressure low--I'm to take my blood pressure first thing in the morning and take Lisinopril only if it's elevated. I was trying to follow orders about drinking as much as possible, but I was feeling worse and worse and lay down after Eddie & Mel & Kate went walking. A bit later, I started throwing up, egesting everything I had drunk. I'm beginning to wonder if the Taxol affects the liver . . .
Shrimp for dinner with black cherries and tapioca pudding for dessert. Joint pain all night; I should have taken Trazadone. A little nausea this morning; I'll take Ativan in a minute.
Neither Dr. Nickerson nor Agnes seemed to believe that my problems with the first infusion could be the result of anything but an infection, although none of the cultures showed anything that would have supported that idea, thus yesterday's infusion was the same as the first, although I was also given 2 mg of "Kyril" to prevent nausea and told to go in today for Neulasta (to support white cell production) because my white cell count was low.
Despite a very nice visit with Angelina after her visit to Dartmouth's Tuck Business School, I had a lot of difficulty getting to sleep, last night. Agnes had told me to go ahead and take Ibuprofen if I needed it the first or second day after my infusion, but my left leg had so much tone from my 1998 stroke that it kept twitching painfully, so eventually I got up and took a trazodone (sleeping) pill. It wasn't until after I got up to go to the bathroom and realized that my chronic bladder infection had once more flared up that the penny dropped; I had not expected it, because the flare-ups usually happen after a plane trip--and my temperature had not been elevated. Fortunately, because of the plane-trip phenomenon, I take the precaution of keeping a Sulfamethoxazole/Trimethoprim prescription handy, and I took a tablet. I'll soon see whether it solves the problem.
Mel remarked earlier today that my scalp needed oiling, and when she got around to slathering it with coconut oil, she also noticed that I had five-o'clock shadow. It's only about 1/4" long, but it looks like it's coming in white; I hope so, because I always wanted to have beautiful, silver hair like Grandma's when I got old enough.
I'm sorry if I alarmed anyone in my last e-mail -- last week's food and drink fiasco stemmed more from miscommunication than from neglect, and my eating schedule has now regularized. I've also been feeling so much better since the transfusion, that if I have to go and get my own, the only drawback is the fact that I often spill anything I have to carry one-handed along with my cane (assuming I don't feel safe walking without it).
Andrea has inspired me to sing to myself every now and then, which is beginning to feel better, too, now that I have agreed with myself to work on pitch now and wait for vocal quality and breath control.
I'm planning to go to Monday's Selectboard meeting but probably not to the Arts Council's musicale on Saturday.
I had my Taxol infusion on Tuesday (1/12) and expected to have a better experience than after Adriamycin.
While Ted and Andrea were here, they made sure I had something to eat and drink when I was up to eating and drinking and whatever equipment I needed to do my work; Andrea's encouragement in mental yoga, and chanting had gotten me to the point of being to use my left arm in ways I had not been able to since 1998!
By Wednesday morning, my tongue was hurting, and I was having that constant "ball-of-hot-lead-in-the-stomach" feeling, so it was hard even to drink. By the next evening, I figured I needed to push liquid no matter how I felt, so I forced myself to drink water; that started me on vomiting and diarrhea, which further dehydrated me.
Friday was a lot like Thursday: No vomiting, but diarrhea.
By the time I could call on Monday (Agnes was in the office, even on MLK Day), she wasn't able call back until late afternoon. When she had heard what I had to say, she asked me to come in to the Oncology Unit. They were not finished giving me saline solution when the nurses needed to go home, so they put me in a Short-Term-Stay room with orders to take samples for a CBC and give me Prilosec and Claritin in the morning. By morning, I was sufficiently reconstituted that they could tell my red and white cell counts were both low, so they gave me two units of whole blood.
Even so, my tongue hurt so badly it was hard to force myself to eat or drink--even with Magic Mouthwash, but I got to the polls before they closed.
By Wednesday, I had my strength back and my mouth had stopped hurting.
Agnes had said she had never before had she had a patient who reacted to Taxol as badly as I (even though she did find some instances in the literature), so she insisted on getting samples to check for a parasite or a virus; the results were all negative, so I guess it must all have been Taxol.
The best I can say for today is that it's been better than yesterday. Yesterday I finished reviewing the last of Angelina's essays--with shaking hands; I don't know whether that was from low blood sugar, low blood pressure, or anemia.
Yesterday and today, I took Ativan in hopes of preventing nausea. It didn't do too much yesterday, but I've been able to eat and drink today, although in small quantities.
I'll call Agnes first thing tomorrow and see what she says.
I was too nauseated to eat or drink much all day yesterday and slept most of the day. When I finally forced myself to drink, I vomited and had diarrhoea. I was warned that Taxol might give me joint aches. It did, but I was too nauseated to take any Ibuprofen. I called the drug store at 8:30 this morning to get my Ativan prescription refilled. I'm feeling better, now.
We left at 8:30 so Mel could drop me off for my 9:15 appointment. It was 5 p.m. before I was ready to leave.
I seem to have recovered from the last Chemo treatment, so Monday evening, the Arts Council came over for a meeting, and I went into the Library afterward for a Selectboard meeting.
I didn't feel horrible, but it took me about five days to actually feel good. But then on Tuesday, my white blood cell count was way down again, so they had me come in for another CBC, which showed that I had hit bottom and started up, again.
Dr. Rosen thinks I should wait 6 to 12 weeks after I finish the Taxol injections to have the second surgical biopsy (lumpectomy), so we scheduled a pre-op appointment for April 12.
Looking at my naked scalp (on which the scar from my aneurysm surgery is now readily apparent), he also seemed surprised that I am going to have Taxol instead of an aromatase inhibitor, which, he says, is less likely to cause blood clots, but I think he was putting too much emphasis on "clot" instead of "intracranial bleeding." I've had every test the UMass/Worcester Medical School faculty could think of to determine whether I was at risk of a stroke from a blood clot, and every one came back negative. Andrea took copious notes for me.
Assuming all goes smoothly in the meantime, I'm planning to be at the next Selectboard meeting Monday evening after the Arts Council comes over Monday afternoon.
It's now been six days since my final chemotherapy session, and I'm beginning to think life can go on. I haven't actually been nauseated, although I have continued to burp unpleasantly with a feeling of its originating in that hot-lead bolus sitting in my stomach, and my eyes are still excessively light-sensitive and watery, sticking my eyelids together and blinding me when the sun is out (not very often for the past several days).
Andrea's been doing yoga with me whenever I felt well enough, but last evening's session was as exhausting as it was exhilarating.
I'm still waiting to hear from Agnes re adjuvant therapy statistics. (The Web site has been down every time she's tried to get them for me.)
Christmas Day was the worst day for soreness in my mouth and throat, but the Magic Mouthwash allowed me to enjoy the day, and since then, there's been only occasional soreness. I had a minor nosebleed, today, but Agnes says that happens occasionally with her patients, but she doesn't know what causes it.
The next week is likely to be less than wonderful, but after tomorrow it's only Taxol, which I am told has fewer and less alarming side effects. I'm due to see Dr. Rosen after my blood test on the 5th, and then I'll have a better idea of the next few weeks.
I wore my wig for our Christmas photo, but generally, I prefer my little plush cap. It'll be a while before I start re-growing hair.
I've already received some of my best gifts:
Chanting with Andrea has repaired some of the break and smoothed the roughness in my voice, so I can actually sing! She and Eddie spent some time while I was in the hospital yesterday, putting the notes on paper to make it easier for me.
As Signe and I drove home singing along with the carolers from Carnegie Hall and King's College on the radio, the occasional brilliant star twinkled against an inky sky; her voice, which I had not heard raised in song for years, is as clear and sweet as ever, and she says she may join the new Unitarian choir in Herndon in the new year. (I hope so!) That evening joins the midnight Christmas Eve tour of the National Mall with Terry and Theresa on my list of favorite Christmas memories.
Transfusions?
My neutracell count had recovered somewhat by yesterday morning, but I was clearly anemic, so they gave me two units (1000 mg=1 kg) of whole blood, and it took the rest of the day. The anemia is probably why I had fallen and why I felt so weak; I'm feeling much stronger this morning. A side effect is that I discovered why newborn Signe had a high bilirubin count: I'm A positive and she's B negative.
One of the papillae at the tip of my tongue felt swollen and painful, the way they do when I haven't had enough B-complex, and by the end of the first unit of blood, a sore-ish place had developed in the back of my throat. I asked Agnes if I could have a B-complex injection (neither of us knew whether such a thing existed), but she thought both were probably from Adriamycin preventing a layer of tissue forming and got the hospital to compound me some "Magic Mouthwash." It did the job, although it also removed any desire to eat anything for about an hour. Fortunately, the hospital canteen had sent up a very good tuna sandwich on whole wheat for my lunch, so I didn't need any supper.
While I was waiting for my transfusions, the hospital PA system played Brahms' Lullaby to mark the birth of a Christmas Eve baby. Merry Christmas, everybody!
In the heat of an Oklahoma summer when the soil was so hot it burnt my bare feet, there used to be periods when the humidity would be so oppressive I couldn't breathe. Then would come the moment when the skies opened with a roar and poured the rain down in torrents too swift for the dry, caked soil to absorb, and the Bermuda grass would raise its glistening leaves through standing pools just made for splashing through. As soon as the rain slackened, I would leap gleefully through the puddles, lifting my knees as high as possible. and at every step, the puddles would splash about my thighs. In my mind, I was a young deer prancing through the river or a dancer hovering joyfully above the floor. Call me Leaping (or Laughing) Deer!
When Andrea guided me through a Heart Yoga meditation yesterday evening, that sensation was the one evoked by her suggestion. Immediately, my breathing became deep and diaphragmatic without my even willing it!
Later, my chanting was not at all melodious, but it was satisfying.
Today's neutracell count was low, 240, so I'll need to go for another on Thursday (and stay away from crowds in the meantime). I was woozier that usual after the blood draw, but I don't know whether the two are related.
Last night a group of neighbors, including five children, came caroling. It was awfully nice to be able to sing, myself, without feeling I was rendering others' efforts hideous; singing is the thing I miss most since my stroke.
I've had no digestive upsets since my last treatment, so I'm moving the commode back into the garage; the only reason I think I still might need it would be because of nausea, but I think a covered plastic container would be more useful in that case.
Andrea is offering to lead me through some gentle (mostly mental) yoga in hopes of getting me to the point of doing some physical exercises.
Remember when you learned not to ask elderly people and hypochondriacs how they were lest you find out? I've begun to feel that I've joined that crew--but I guess I'll keep this up for future reference--Kelly seems to feel that it's valuable, and when I forget things, it's nice to be able to refer back to them. Just don't let me bore you as much as I'm beginning to bore myself.
What a relief! By the fourth day off Compazine, I could almost keep my eyes open, I could get up and walk without tottering, and the muscle cramps went away. I was even able to attend to some town business, albeit at the end of a phone line/connection! Dr. Nickerson confirmed that my symptoms could have been from Compazine and agreed that it would make sense to lay off it until/unless I really needed it (although, of course, I got it intravenously before yesterday's treatment).
My Adriamycin dosage will still be down 20% of the first treatment amount.
When the lab computer finally came back up, it found my neureophil count double that of last week's--good news!--no more hospitalization for fever, if all goes well--just in time for Vermont's H1N1 injectible vaccine to arrive; I'll get it tomorrow with my Neulasta shot if Agnes can jump successfully through all the Health Department hoops in time.
Everybody seems to like my bald look, and I've taken to using a lint roller to remove loose stubble before it falls on my keyboard ("rolling my head").
After my last Adriamycin/Cytoxan dose on December 29, I'll have a course of four biweekly Taxol injections (January 12 & 26 and February 9 & 23) before going to (cheap!) oral Taxol for the next 5 years. I haven't yet asked whether my PowerPort will be removed at the end of February, if Dr. Rosen does the second surgical biopsy then.
Sometimes I wonder if I've lost my mind: It's taken me all this time to realize that a number of troubling symptoms are drug-related. I should have paid more attention to the complete spectrum of Compazine side-effects, rather than just the horrific one of tardive dyskinesia, along with the self-knowledge that my body typically eliminates drugs more slowly that dosage directions would suggest.
First, I had noticed my lower (!) eyelids feeling too stiff for my eyes to open fully. Among Compazine side-effects are "mask-like face" and "blurred vision."
Second, Friday evening, I got bored with TV but wasn't ready to go to sleep, so I got up to do some work on my computer (surprise!) and realized I needed my glasses. Rather than the careful, three-point turn that has become my wont since the last time I fell and twisted my back so painfully, I whirled--and fell, fortunately, flat on my back so I didn't injure myself, but as some of you know, I have only once been able to get up from he floor since my stroke, and that time I still had the flexibility and the leverage to get my knees under me. I was like an overturned beetle, except that I don't have six legs to wave in the air!
We had nearly come to the point of calling 911 (in the midst of a snow storm with gale-force winds), when Mel thought of her and Eddie pulling up on both arms. The first attempt was painful because of the tone in my left arm, but when they put both hands under my armpits and pulled, it worked! Not something I want Eddie, especially, to be doing on a regular basis, given his Metoprolol-induced weakness, but better than it might have been.
Another Compazine side effect is "dizziness."
Third, I had wondered if Atriamycin had been causing increased tone in my stroke-affected (left) leg; yet another Compazine side effect is "rigid muscles."
Finally, I realized that I have become constipated despite everything I had done to prevent it. Duh!!! It's a COMMON side effect.
I was given Lorazepam (Ativan) as an alternative; it has somewhat different, but equally disturbing, side effects.
Within limits, nausea is better.
Last night, Signe cut my remaining hair with Eddie's electric beard clipper, which cuts only close enough to leave a 1-mm stubble--a whole lot better than patchy tufts, and I'll be glad to have less to fall into my eyes or on my keyboard. My brain surgery scar is exposed, again. Agnes told us when Signe took me in for my blood draw on Tuesday that hair follicles mature in about twelve days and white blood cells in about ten, and neither renews itself well during Adriamycin administration, which is why the Neulasta injections (which don't seem to have any effect on my hair follicles--although, I might not notice). Signe used Miryam's Eucerin to anoint my scalp once the deed was done, and we then watched several episodes of "The IT Crowd."
Prophylactic Compazine every morning seems to be keeping nausea at bay. I have an appetite, but don't enjoy food right now. I'm weak enough that Signe wheeled me up to Dr. Nickerson's office for my blood draw and back to the car (my neutrophil count was up to 330!) but strong enough that when the Town Clerk refused to bring out a primary ballot to the car, I was able to go inside and vote.
I discovered that I had had the forethought to get shingles vaccine in January of 2008, so that's another worry I can abandon!
So far, so good.
Saturday was miserable; everything I swallowed seemed to sit like a lump of hot lead in my stomach. But then Randy brought me a bottle of papaya enzyme tablets (as well as acidophilus). I took four before bed, and by morning, my stomach felt fine.
That, alas, encouraged me to think I could get away with coffee and a ZonePerfect bar for breakfast. It all came back up, but without much HCl. Because the papaya had soothed my stomach overnight, it hadn't occurred to me to take Compazine before breakfast; I'll try not to make that mistake again.
Miryam found a lactose-free product called Boost that I think I'll try. Ensure does contain lactose. The short hairs remaining on my head continue to rain down.
Eva urges me to keep eating whatever tastes O.K., whether or not I'm hungry, to keep my strength up. I know she's right, but my stomach doesn't seem to agree.
I believe that peristalsis continues, but actual digestion doesn't seem to; my stomach is collecting bubbles (of methane?), some of which peristalsis pushes down my gut, but my understanding is that when that happens, it is a result of ingested food remaining undigested and therefore unavailable for metabolization (or "keeping my strength up").
Babies with digestive problems are fed ripe bananas, but ripe bananas are hard to find, and unripe ones (even braised gently in a minimal amount of butter) don't seem to answer the purpose. My lactose intolerance makes milk products unappealing. Any ideas, anyone?
Addendum: My visual migraine has recurred and refuses to loosen its grip.
Surprise! I'm not feeling bad, but I'm not really feeling good. No actual nausea, but no desire to eat. Walking across the Town Hall dining room, I had to sit a few moments and just breathe before I could continue.
Arrived at 11:30 for a brief meeting with Dr. Nickerson followed by blood draw installation of IV.
For some reason, it took more than the usual amount of pressure to get the wicked-looking needle into my PowerPort, which was quite uncomfortable. I asked Barbara which direction the needle went in (the straight portion is about 2 cm long with a 0.5-cm-or-so prong on the end, and the port Agnes showed me looked perhaps 0.2-cm deep, so I had been assuming that once the prong went in, the rest of the needle slid in flat and parallel with my chest wall). "Straight in," she told me, so maybe my horror at the image in my mind of the port going an inch or so into my chest when I had thought it was a sort of flat wafer just under my skin made it more uncomfortable.
Because of the effect of the first treatment on my white blood-cell count (which had recovered dramatically (see yellow triangles on the chart, below), the Adriamycin dose had been reduced by 20%, but the treatment was exactly like the previous one and otherwise uneventful. (BTW, Adriamycin makes one pee red.)
Monday, I realized that I was suffering from existential despair and figured I'd better get my Paxil Rx refilled while I still had the sense to recognize what was happening to me, so I asked Agnes to phone in a prescription for me. I had stopped taking it when the chi gong exercises my teacher gave me made them unnecessary, but clearly, it was time to bring in the big guns.
Still no nausea or other gastrointestinal disturbance, but my hair started coming out in handfuls this afternoon on my way to get my Neulasta shot. The nurse who gave it to me was very careful to warm it up to room temperature, and it hardly hurt at all.
This evening, I persuaded Mel to hack off all the hair I hadn't already pulled out. It's very annoying to have stray hairs on everything, including in one's eyes and mouth. I'm hoping it's all fallen out by morning.
Friday morning, after a good night's sleep, I went out to the living room to work on a number of pending projects. By late afternoon, my right hand had begun itching unmercifully; no hives though, and it wasn't until I had eaten some shrimp and my face became flushed and my eyes heavy-lidded, that it occurred to me that I might be having an allergic reaction, so I took my temperature and found it was normal, indicating (I think) that it was probably allergy. A Benadryl tablet took care of it but left me wondering if it might have been the shrimp (or MSG on the shrimp). I would have been crushed if it were; they have been my favorite food since I first ate one at about 12 (I grew up inland), so I ate the three remaining shrimp for supper. No reaction, so I can only conclude it was a delayed reaction to the antibiotic I was given in the hospital - Ticarcillin? Tegopen? I'll have to find out on Monday so I can add it to my list of no-nos.
For days, I have had an itch to the left of my PowerPort. I try not to scratch, because I'm afraid I will break the skin and let in infection. Has anybody else had a similar reaction?
My sister had surgery and chemotherapy for her breast cancer and then refused any further treatment. She's depending on her faith to do the job. Faith is her strong suit, but skepticism is mine. I respect her right to make her own decisions, but because mine is not the same as hers, she seems to feel that I do not respect hers. I am unwilling to argue with her about it, because when faith healing does work, it seems to be because the faith is absolute, and because I love her, I do not want to say anything to cast doubt on her belief.
Monday afternoon, Ted and Andrea left for NYC and, feeling weak and tired, I went to bed. After a couple of hours during which I couldn't get warm enough to sleep and my bile duct had begun grumbling, I sat up, took a Compazine, and went out to the living room. Although I didn't feel hot,the thought that I just might have a fever arose in my mind, so I asked Mel for the electronic thermometer Barbara had sent us home with. Once we had realized that the beep we were supposed to hear when it had its reading was all but inaudible and got a proper reading, it was clear that I did, indeed have a fever - my temperature was 100.8*F, so in accordance with Barbara's instructions, we called Agnes, who said I should come into the Emergency Room immediately for a CBC (complete blood count). Mel quickly fed Eddie and warmed up the car, and, in my nightgown, robe, and fuzzy slippers, I was whisked away to Brattleboro.
Agnes had already prepped everyone for my arrival, so I didn't have to wait around in a corridor surrounded by coughing and druggies crying for their next fix. (My first nurse, David, said the bar-fighters had already been and gone; I guess Brattleboro starts early.) My white blood cell/neutrophil count came back swiftly!--it took only 20 minutes--as 0.15. (Four to 10 is normal, and the counts of chemotherapy patients who develop fevers should be at least 0.5 for them to return home.)
None of the cultures or other tests came back positive for bacterial infections, but lacking any diagnosis other than a possible viral infection, I was admitted and put on intravenous antibiotics. (My impression was that they had hooked up two different ones to my IV drip initially, but by the time I had been there 24 hours, I was on ? alone.) By then I was already feeling fine, but my temperature was even further elevated, so I wasn't disposed to argue. I assumed it would be overnight, or at most 24 hours. Wrong!
When Dr. Nickerson visited me on rounds the next morning, it didn't occur to me to ask him (or Agnes) how long I should expect to be in, but Dr. Paasche wondered, so I asked him the following morning and was told the protocol (which he said had some flexibility) was three days; Agnes later clarified that by telling me that once my neutrophil count came up as far as 0.5, they would feel it was all right to send me home. In the event, it was Thursday before my count came up to 0.68 and I was cleared to be for take off and unplugged. What a relief to get rid of the window bandage over my Power Port, which had gotten itchy, and my constant companion, the IV pole!
One minor puzzle was the nurses' confusion about whether I had the older model MediPort, which must be flushed with Heparin every time it is disconnected to prevent possible blood clots, or a later model, called a PowerPort, that I was told made Heparin unnecessary. They kept telling me that if I had a PowerPort, I would have received a card with its serial number; if I was ever given one, I have no recollection of the event and had no card. The nurses found an image of my card in my medical records, however and gave me a photocopy. Whatever the case, I received Heparin every time I was disconnected but one.
Every contact I have with Brattleboro Memorial Hospital staff gives me more positive impressions about the facility, its staff, and its management. There is never the sense that the nursing staff is harassed or psychologically abused, which used to be the norm in hospitals. On the contrary, staff members were universally friendly and always seemed to have time when I needed it. I don't know whether that is a function of staffing protocols or of its having been Thankgiving week with a low bed count.
Neither of those, however, would account for the great respect everyone, physicians included seems to hold Agnes, who is a Nurse Practitioner, in. It is clear in the voices and comments of everybody concerned. Dr. Paasche, in particular, made a point of saying that while protocol required Agnes' directives to be countersigned by an M.D., all the doctors have learned to trust her judgment absolutely, so that protocol makes little practical sense.
Still no nausea or digestive upset. And unlike Eva, I'm not losing weight. I'm not sure whether I'm losing my hair or not: Yesterday, I kept having to fish out threads from my keyboard, which was annoying, but that's the only possible evidence of alopecia, so far!
I started the day full of gratitude--for my Signe, who doesn't wait to be asked but tells me to put on my shoes, wraps my ruana around me and drags me and Mary out to walk in the late autumn sunshine, in circumstances in which I'm very unlikely to fall--for Ted who seems to intuit the times when I feel loneliest and calls (or visits) me--for Eddie and Mel realizing how endangered I have felt using the front walk during ice-and-snow seasons past and getting Randy to build a non-slippery gangplank with railings on both sides and the floor at the level of the front stoop that even looks good!--for Mary's tales of her childhood and youth in Cornwall--for Andrea and Kate, who ask the questions that don't occur to me or that slip my mind (even when they're afraid of offending me)--for Mike and Paul's general sweetness, thoughtfulness and cuddliness--for Miryam's "benevolent universe" and Eva's practical advice--for Sue's thoughtfulness in finding and for all the other wonderful people in my life that I don't give enough positive feedback to.
Clarification: I seem to have given the impression that I am begging for financial help; what I really wanted to convey is the difficulties inherent in negotiating medical billing, thinking that I might inspire others whose only insurance is Medicare (a wonderful program, but not the whole answer)--especially those who, like me, are approaching their seventieth year and thus more likely to fall victim to expensive disorders like cancer--to sign up for medigap insurance and Medicare drug coverage before it becomes urgent.
I suffered no nausea or digestive upset following my first round of chemotherapy. At 4 p.m. on Wednesday--exactly 24 hours after the last of my Adriamycin--we went back to Brattleboro for a Neulasta injection (subcutaneous, rather than intramuscular or via my MediPort, but exquisitely, albeit transiently painful) to support my bone marrow production of blood cells. Barbara told me that I might expect joint and back pain as side effects but that they should be easily controlled by Ibuprofen.
I am to return Tuesday afternoon (11/23) to have blood drawn so they can make sure my white cell count is not depressed before my next round of chemotherapy.
Agnes is working on getting Neulasta samples for me. Eva says that when she was having chemo, they did her blood counts just before the chemo, so if they were all right, Neulasta was unnecessary; I'll ask Agnes about that possibility on Monday.
Still no nausea, but I had trouble sleeping that night and a little ache in my right shoulder (nearest the Neulasta injection site), so Thursday, I took a sleeping tablet (Trazodone) and made up for it. Friday night, I had, not nausea, but intimations of possible nausea and took one of my Compazine tablets. Since then, I've been extra careful about not eating anything that might produce nausea and restricting the volume of my intake, in case I should become nauseated.
Kate and Mike and Mary and Signe all arrived Friday evening, Signe without Margaret (who had some awful virus and didn't want to share it). Ted and Andrea came in from New York City, where Andrea is having yoga master classes through Tuesday, on Saturday morning.
AARP called to say they had received my medigap application and would render a decision in a couple of weeks, so I called Vicki to postpone PT. She had already faxed the measurements she took and her queries to Dr. Levene's office and expects to hear from them before we resume.
I spent most of yesterday negotiating the shoals of medical billing. Unlike every other business in the world, hospitals set up accounts by service billed rather than by client, so payments are often credited to the wrong account, and one gets duns for things one thought had long since been paid for. My online banking service is not set up to deal with multiple accounts from the same vendor for the same client, either. To confuse things even farther, some physicians' services are billed by the hospital and others by the individual physician or that person's practice (whose name often reflects the specialty rather than the individual). Billing offices seem to be equally confused; yesterday, I called Athol Memorial Hospital to ask about two radiologists who had submitted claims to Medicare for service on a date that could only have been done there, only to be told that the hospital did not use their services. In the end, I found information on their practices only because Medicare.gov finally reconnected to its data bank. One physician showed up in two completely different practices in different states. I'm hoping that on Monday I can reach someone who knows what she is talking about to sort it out!
It's bad enough to be anxious about having enough money to pay one's bills without being unable to make sure that the payments one can afford are credited to the right bill. The Senate finally voted last night to debate the health care bill, so that's something to feel hopeful about!
Yesterday morning, Mel spread a shower curtain next to my bed and put the commode on it in preparation for possible nausea and/or diarrhoea from the chemotherapy.
We arrived at BMH about 11:35 and talked with Dr. Nickerson about expenses, particularly about the cost of Neulasta (pegfilgrastim), an amino acid made using E. coli bacteria that stimulates the bone marrow and promotes the growth of white blood cells (neutrophils) to counteract adriamycin-and Cytoxan-produced immune-function suppression (neutropenia).
My nurse, Barbara Philbrick, injected a little lidocaine into the skin around my Mediport and then inserted a needle with a tube and screw- attached before drawing blood, flushing the shunt with saline solution, and then administering a Compazine (prochlorperazine) solution to prevent nausea; it is used primarily as an anti-psychotic and can cause permanent tardive dyskinesia if taken at a rate of more than 20 mg per diem, so I hope I don't need to use the prescription I was sent home with; if I do, I'll have to be really anal about timing.) I was also given a prescription for a tranquilizer, Ativan (lorazepam), as an alternative. She then told me that:
They needed a new echocardiogram before starting the chemotherapy, because adriamycin can cause can damage one's heart. Consequently, my chemo didn't start until about 2:20. It took an hour to complete the Cytoxan drip, and then she pushed the adriamycin, using three hypodermics, rinsed the apparatus with a heparin solution to prevent possible clots, capped it, and sent us home.
So far, I've had no nausea at all, and alas, seem to have no impulse toward anorexia. I understand that hair loss will be gradual and is unlikely to start for a couple of days.
(left) Site of MediPort installation with finger pointing to MediPort in place under the skin
(right) A typical mediport
By the time Signe and Mel and I were shown a MediPort, Ted and Andrea had left for Texas and Arizona, so Andrea didn't really know what I was talking about. Above is a photo of the apparatus with a reference to the Wikipedia page about them along with a photo Eddie took this morning to show what it looks like installed. The yellow bruise is roughly where one can feel the Mediport (behind the visible incision), but I don't know what caused the red area at the bottom of the photo, which feels slightly rough or the red streak going up to the right or the smaller red scab at the upper left.
Signe called last night to remind me that there is open enrollment for Medicare Part D, which would pay for at least a part of the chemo drugs, starting on 11/15. I've identified three potential providers, but the one that seems most appropriate is the Blue MedicareRx Premier Plan, which would cost me $ $92.70/month, which can be deducted from my Social Security check. However, I was just told that it would not go into effect until January 1, and I know that is much later than Dr. Rosen feels I should begin my chemotherapy.
Dr. Goodwin re-filled my cavity in short order and without Novocain. When he (and his assistant Gina) discovered that I was about to start chemotherapy, he told me of his 90-year-old mother who had chemo and radiation 30 years ago but developed cancer in her other breast "from the radiation" and had a mastectomy and tamoxifen. Aside from Alzheimer's she is doing fine, he said. This reawakened my distrust of radiation therapy, but I realize that her second cancer might well have arisen from an environmental or genetic cause.
He also suggested I get a shingles vaccination, telling me of people who had had chemotherapy and developed shingles. Since I had chickenpox, its precursor, at the age of 6, that caught my attention, but this morning, Dr. Paasche's assistant, Lois, said that Dr. Paasche had the vaccine but was unwilling to give it to me so shortly before my beginning chemo and suggested I get Agnes' opinion. Agnes told me that because it's a live-virus vaccine, it would be dangerous to take now and that the NCI advised against it; she said that in 5 years at BMH, she had never had a patient taking my chemo cocktail develop shingles and that it was very rare for any breast cancer patient to do so.
Maybe Dr. Goodwin has a penchant for pointing in alarm.
Neither Dr. Paasche nor Dr. Nickerson has received injectable H1N1 flu vaccine, but both offices will give it to me if I can find some.
The "Steri-Strip" Dr. Rosen covered my MediPort incision with was supposed to come off in the shower, but it turned out to be more staying power than advertised--and itchy!--so I called his office this morning and was told it was fine to wash it off. It came off without incident.
Vicki, having consulted by phone with Diane in Dr. Levene's office and received photos of the apparatus that holds the patient's arm, did an evaluation on my left arm to see if she could get it into a position that would allow for the radiation therapy. My shoulder had more flexibility than either of us expected, and both of us wondered why my arm could not simply be allowed to hang down to my side, where it looked like it would be out of the way of the X-rays. She will consult with people in Dr. Levene's office about possible alternatives and with Applewood about possibly accompanying me to Dr. Levene's office to test our hypotheses in situ. She held my arm away from my body for about half an hour before I was too exhausted to continue. In the meantime, I have half-hour appointments with her at 11 a.m. on Friday (11/13) and Monday (11/16).
Appointment with Dr. Nickerson: Tuesday, November 17, 11:30 a.m., followed by chemotherapy (treatment will require about 4 hours)
After a 15-hour fast, Mel delivered me to the front door at BMH a bit after 9:45 a.m., so I could register, be issued a wristband with an ISBN # (ah, the wonders of technology!), and go down to Outpatient Surgery. There, Denise spent perhaps an hour making sure that I was who she thought I was, checking up on my fast and whether and how I had followed her pre-op directions, and setting up an IV drip.
Dr. Rosen's previous surgery took somewhat longer than anticipated, so it was after 12 by the time the anesthesiologist, Dr. Fuller, and he came in for our final briefing: Dr. Fuller told me I would get an hypnotic that would wear off quickly by IV in addition to locally injected Lidocaine that would take longer to wear off. Dr. Rosen confirmed that he would be installing my Mediport on the right, but by then Eva had already assured me that she had had bruising but no pain from hers, so I wasn't as apprehensive as I would otherwise have been.
We also touched on my radiation treatment options; he is clearly uncomfortable with the idea of bilateral mastectomy, and shamingly, I almost started to cry as I was trying to explain why I am so unhappy about the possibility of a unilateral mastectomy. I told him about my meeting with Dr. Jarvis, who had apparently not yet followed up on her suggestion that she speak to him about it, and about my subsequent contacts with Vicki (PT) and Dr. Levene's nurse about the possibilities related to increasing my range of motion. We agreed that I would consult with all concerned in early January. I have made an appointment with him at 1 p.m. on January 5, but I'll wait until after I've seen Vicki to make another appointment with Dr. Levene.
About an hour later, I woke up on the stretcher and was taken back to an outpatient surgery recovery room. My right shoulder was sore but not actually painful. An unexpected problem was that I was nauseated and started to retch in the recovery room; since I had ingested nothing since the night before, there was very little in my stomach to heave up-until my nurses, possibly thinking I was dehydrated (although how I could be, having been on a saline drip for an hour, I don't know), gave me ginger ale. That came back up, too, as my nurses tried giving me oxygen and urged me to take deep breaths and let them out slowly. Eventually, I dozed off, and when Mel returned from what was supposed to be a walk and turned out to have been a marathon attempt to find out why she couldn't get through to Eddie on the phone (a wide area of Warwick had lost phone service or had it only intermittently), and I was discharged.
As we started down the hill from the hospital, my nausea returned, apparently triggered by the heat in the car, but it subsided enough for me to get home before I was unable to resist it and my stomach ejected pure bile. Maybe something in the anesthesia had stimulated my liver? Mel thought she had eaten all Sue's ginger chews, so she made me some ginger tea, which calmed my stomach down, and when she found another package of the chews, one of those counteracted the taste and irritation from the bile.
A nice surprise when I got home was a package from Sylvia containing Nuland's monograph on Maimonides and one of the latter's commentaries on the Midrash. When Signe was in high school, she was assigned some of the books of Chaim Potok in a class, and when she had finished them, I read them and first learned more than the name of Moses Maimonides; then, when I was in Chicago before Ted and Andrea's wedding and visited an exhibition at the Spertus Center of documents recovered by archeologists from the Old Synogogue in Cairo, I read and was intrigued by a letter to him from his merchant brother, David, from a trading voyage to India. So last week, when I discovered I could download Maimonides' Guide for the Perplexed and the Babylonian Talmud for my Kindle for free, I thought "why not?" and did. Amazon's program got excited, possibly thinking I must be a yeshiva student, and suggested I might want several other volumes of the same genre, so I consulted Sylvia, who I knew studies with the rabbi at her local synogogue in Austin and could tell me which, if any, I might find accessible. She immediately offered to send the book and commentary, and having read only the prologue, I can't wait to get farther into it.
I have decided that, considering Signe's very tight schedule, I won't go to Washington next week to meet up with other Pocahontas Club members.
MediPort Installation:
Vicki has spoken with Diane in Dr. Levene's office about the position I'd have to be in for recumbent treatment, and not only did she conclude that the position wouldn't necessarily have to be as extreme as Dr. Jarvis seemed to think, she discovered that there is an arm support that the therapist could help me get into. We agreed on Monday at 11 for an assessment appointment. I then called Diane to ask if the arm rest is detachable, with the thought that I might borrow one briefly for Vicki and me to see what I would actually have to do. She offered to send me a photograph, instead. So there's some possibility the whole radiation-geometry problem may be moot or solvable without too much difficulty.
Jackie left a phone message to tell me that the MediPort would be installed on my right because the surgery was on my left. I must say, I was dismayed. It's bad enough not to be able to use my left arm; I anticipate that until the incisions heal, it will be painful to use my right arm, too, but maybe I'll be lucky and have no more pain from this surgery than from the last.
BMH surgery just told me to report in at 9:45, tomorrow morning.
BMH CHARITY FREE CARE: My call to the BMH cost-estimates number was forwarded to oncology Nurse Practitioner Agnes Mikijaniec , who assists Dr. Nickerson, and now I have an even better understanding of her reputation as a latter-day angel: Not only did she return my call, when she found I was out, she kept calling until she got me, and in the apparent understanding that a person with unlimited financial resources would not be trying to determine the cost of treatment, she had suggestions for me and took the next step of getting Mary Draper of BMH patient financial services and Breast Care Program nurse Kelly McCue; Mary forwarded me an application for this that I will fill out and give her tomorrow. Agnes also offered to intercede for me with one or more of the drug companies.
MEDICAID: Some of the people I have consulted with have suggested that I apply for Medicaid, a state program, but I had resisted doing so in the belief that I would not qualify. When I went on the Commonwealth web site, I was unable to find the information I need, so I called Franklin County Home Care, which is the Franklin County Council on Aging agency, and made an appointment to explore this possibility with Shine (sp?) Program representative Curt Hudson Tuesday morning, November 10, 2009, before my appointment to get a cavity re-filled (for $191). One of the good things about this, according to Agnes, is that it would cover retrospective expenses.
RAYS OF HOPE: Reva Reck, who participates as a member of the Temple Israel team in fundraising walks, suggested I get in touch with this organization, which raises money to provide services for breast cancer patients and to fund research. (See http://www.recorder.com/story.cfm?id_no=6586218) When I looked it up online, it seemed to limit its support to Baystate Health patients, so this is probably not going to be useful to me.
Dr. Jarvis was very thorough and, like all the specialists I have consulted with on this, very willing to explain things. We concluded that I have three reasonable options, and given my therapeutic schedule, I wouldn't be starting radiation until late January, so there is time to explore them before making a decision:
1. Computer-controlled partial-breast irradiation focused on the site of the excision, which she and her partner at D-MH will work with Dr. Levene on programming between now and the beginning of January. No one seems very enthusiastic about this, and I don't have a good sense of whether it's because it would be a time-consuming pain or if they lack confidence in it.
2. Work with a PT/OT to increase my ability to raise or lower my left arm without excessive pain. I'm not sure whether this is even possible, but, given that I have almost three months before radiation would start, it seems worth a try. First, I'll talk with Vicki Burbank (the excellent PT I've worked with just down the road in Winchester), tomorrow, to find out what she would need to know and how she would need to get the information before I ask Dr. Paasche for a referral (and, possibly, Dr. Levene to confer with her. If it worked, it would be the easiest (and possibly most effective) option. (Mel pointed out that this is yet another situation in which my ingrained stoicism ("inability to whine" she puts it) works against me; she thinks Dr. Jarvis didn't get an accurate idea of my degree of discomfort (agony), and she's probably right. Almost anything is bearable if the end is in sight, but I don't know whether I could bear the amount of time I'd have to have my arm out of the way--assuming I could even keep it in position.)
3. Dr. Jarvis thinks Medicare would cover a bilateral mastectomy (which would render radiation unnecessary) if the right mastectomy were considered prophylactic. [I'm reluctant to have a unilateral mastectomy, given how hard the assymetry caused by my hemiplegia is to bear.] She will confer with Dr. Rosen on this possibility.
This said, I must say my confidence in the safety and efficacy of radiation is flagging: There is no way of restricting the radiation to cancerous cells. Both healthy and cancerous cells are irradiated indiscriminately in the belief that the formerly healthy cells can correct their scrambled DNA, using other copies they contain, whereas cancer cells can't. I find this inherently unreasonable. The reason unfocussed radiation causes cancer is that it scrambles DNA. (I realize it may be that unfocussed radiation overwhelms all copies of the DNA, whereas focused radiation is less messy and perhaps that's why Eva and Sylvia had good results from this therapy, but the whole thing seems to me to be an exercise in faith - which I'm getting worse and worse at.)
Although Brattleboro Memorial Hospital does have billing estimates line, it's almost impossible to get estimates of how much cancer treatment costs and thus how much the 20% one must pay oneself will add up to. On the assumption that my experience may be helpful to others, I have decided to add a table (below), listing the charges and Medicare payments for my treatment to date.
| Provider | Treatment/Service | Date | Billed by Provider | Medicare Approved | Payments & Adjustments | Balance |
|---|---|---|---|---|---|---|
| CMC Radiology | Read mammogram | 6/23/09 | $0.00 | $64.00 | $0.00 | $64.00 |
| CMC Radiology | Breast Exam | 7/2/09 | $0.00 | $100.00 | $94.20 | $5.70 |
| BMH Surgeon Rosen | Consultation & Imaging | 7/21/09 | $1329.00 | $448.49 | $448.49 | $112.12 |
| BMH/DMH Pathologist | Tissue Exam | 7/22/09 | $134.00 | $134.00 | $122.99 | $11.01 |
| BMH Radiology | Mammography | 7/30/09 | $250.00 | $250.00 | $231.53 | $18.47 |
| D-HMH Pathology | Pathology/Histology | 8/3/09 | $698.00 | $648.88 | $648.88 | $49.12 |
| CMC Radiology | MRI | 8/11/09 | $3569.67 | $3569.67 | $3358.59 | $161.08 |
| BMH Surgeon Rosen | Office Visit | 8/24/09 | $145.00 | $60.30 | $48.24 | $12.06 |
| BMH Surgeon Rosen | Outpatient Office Visit | 8/28/09 | $145.00 | $60.30 | $48.24 | $12.06 |
| BMH Radiologist Tepfer | Pre-surgical EKG Report | 8/28/09 | $0.00 | $27.00 | $25.24 | $1.76 |
| BMH Surgeon Rosen | Pre-surgical tests | 8/28/09 | $422.00 | $412.00 | $397.62 | $14.38 |
| BMH Surgeon Rosen | Imaging & Supplies | 9/2/09 | $2246.20 | $2246.20 | $2042.36 | $203.84 |
| BMH Radiologist Elliot | MRI | 9/2/09 | $128.00 | $60.29 | $115.94 | $12.06 |
| BMH Surgeon Rosen | Partial Mastectomy w/Lymph-node Removal | 9/3/09 | $3836.00 | $817.77 | $725.80 | $181.71 |
| BMH Radiologist Elliot | X-ray; needle-placement | 9/3/09 | $780.00 | $220.04 | $735.99 | $44.01 |
| BMH Anesthesiologist Prah | Anesthesia | 9/3/09 | $1640.50 | $388.51 | $310.81 | $77.70 |
| BMH Surgical Supplies | Partial Mastectomy | 9/3/09 - 9/4/09 | $13595.30 | $13465.30 | $12476.75 | $988.55 |
| DHC Oncologist Nickerson | Oncology Intake | 9/18/09 | $0.00 | $129.00 | $110.78 | $18.22 |
| Totals to Date | $28918.67 | $23101.75 | $21942.45 | $1987.85 |
This was to review arrangements for installation of my Mediport in preparation for chemotherapy - and to reassure Dr. Rosen that I was not planning to render all his good work useless by refusing radiation treatments and/or chemotherapy. He commented that, while he's fine with complementary therapy, he feels alternative therapy is a serious mistake - noting that in the past, 30% of the women who did not have radiation had recurrences. Of course, that means 70% didn't, but there is no data to say what, if anything, they had in common.
It will be installed under the skin below my left clavicle and into my superior vena cava, unless my ribs are so close to my clavicle they are likely to pinch off the cannula, in which case he will use my jugular vein and place the port wherever seems appropriate (unlikely).
The only potential problem he sees with it is my developing a clot either in the port, itself, or in the vein, in which case, I will be given coumadin or some other blood thinner. He has had one patient whose Mediport came apart and had to be replaced, but that was an incidence of about 0.1%, so he's not expecting mine to do so, and the timing is not an issue because, while they prefer not to, the port can be used immediately after installation.
After my meeting with Dr. Rosen, I was sent down to pre-op, where I was told to:
Dr. Rosen will most likely install my Mediport late in the morning of October 29th ; I have a preliminary appointment with him at 10 a.m. on October 23rd.
I also have an appointment with radioncologist Dr. Leslie Jarvis of Dartmouth-Hitchcock at 1:30 on Wednesday, October 28, in Lebanon (NH).
Staff:
Diane Halas - nurse with about 15 years experience in oncology; four technicians, including Ken, who rotate treatment supervision.
TO BE FOLLOWED UP ON: FINANCES - Cost of outpatient treatments only partially covered by Medicare.
Chemotherapy will be covered, according to Agnes, because it's done in the hospital; I'm not certain this is true (see underlined quotation from page 43 of the Medicare booklet, below), but I haven't been able to speak with anyone from the billing office about it.
Gail Wallert, social worker for patient finances at Cheshire Medical (Keene), (603) 354-5400x3865, will mail application:
Section 6: List of What Original Medicare Covers
Outpatient Hospital Services
Medicare Part B covers medically-necessary services you get as an outpatient from a Medicare-participating hospital for diagnosis or treatment of an illness or injury. Covered outpatient hospital services include the following:
In 2008 YOU pay 20% of the Medicare-approved amount for the doctor. For other than doctors' services, you pay a copayment for each service you get in an outpatient hospital setting.
Unless otherwise noted, in 2008, you pay an annual $135 deductible [already met] for Part B-covered services and supplies before Medicare begins to pay its share, depending on the service or supply.
SCHEDULING:
Chemotherapy: November 17th through December 29th
Second lumpectomy: Probably January 7th
Radiation therapy (a total of about 6000 rads) to prevent recurrence: Beginning about January 18 and continuing through a date to be determined on the basis of the protocol to be used (see below)
TO BE FOLLOWED UP ON: possible alternative radiation therapies - Conventional, recumbent position for radiation therapy could damage heart/lung/arm; a dry run using the apparatus supporting patient in prone (face-down) position revealed that it is too narrow for me to position myself on it safely - especially if I have to do so daily for several weeks.
TREATMENT PROTOCOL: Ten minutes p. d. (5/week) treatment
OTHER OPTIONS:
Mastectomy - This would remove all tissue that would likely have been invaded by cancer cells, so there would be no need for radiation therapy, but would render me lopsided; medicare doesn't pay for elective surgery, so having my other breast removed to re-balance my thorax isn't possible.
Mammosite therapy - involves insertion of a balloon with cannula during follow-up surgical biopsy and seeding with radiation beads, would be done in Lebanon.
TREATMENT PROTOCOL: Much shorter; daily visits not required.
IMRT (intensity mediated radiation therapy) - computer-controlled treatment administered to patient in recumbent position using parameters entered into a new protocol (suggested by D-H oncologist - Dr. Levene's preference)
TREATMENT PROTOCOL: Five treatments/week for four weeks
Focussed external radiation to treat part of the breast using a different fractionation process - This is experimental (double-blind protocol), so to avoid being put in the control group, I would have to request the treatment and not the trial protocol. (also suggested by D-H oncologist)
TREATMENT PROTOCOL: Ten minutes p. d. (5/ treatments week) for four weeks
SIDE EFFECTS - Dr. Levene says 6000 rads would not cause radiation sickness or hair loss.
It might cause:
STRONGLY RECOMMENDED (by Kate's sources):
Contact with Dartmouth/Leahy for other possible treatment options: trials may be avoided but treatments may be more experimental.
Dr. Leslie Jarvis at D-H will call to set up an appointment.
She specializes in chemotherapy wigs, but Kelly says the American Cancer Society has wigs and hats free for the asking at 14 different hair salons in Vermont.
The chemotherapeutic drug I will be having, doxorubicin (Adriamycin), will probably make my hair fall out, so I'm hoping that when I'm in Washington, Signe and I can find a perruquier who carries cool wigs like those Jennifer Garner wore as a disguise in Alias--or maybe a cornrow wig with beads that will click when I turn my head--and can fit it to me!
Since I'm planning to go to NYC for Su-Kyeong's wedding on 10/11, followed by a brief trip to Oklahoma (returning to Warwick on 10/17) and hoping to join the Pocahontas Club for Cherokee Storyteller Coke Meyers' 90th birthday party in Washington on November 11 and then visit the Capital Building for the Congressional Medal presentation on the 12th and the White House on the 13th, my chemotherapy will not start until Tuesday, 11/17 at 11:30. I will have 3 more sessions spaced 2 weeks apart (on 12/1, 12/15, and 12/29, barring unforeseen circumstances), each followed by an injection to encourage red-blood-cell production (which doxorubicin inhibits) on the following day. Once that is done, I will start a course of Taxol treatments every 2 weeks (1/2, 1/26, 2/9, and 2/23).
Preceding that (on a date yet to be determined), I will be going in for an echocardiogram to make sure the risk of the Adriamycin causing me congestive heart failure is minimal and and H1N1 and pneumovax (for pneumococcus and septisaemia) vaccinations to forestall possible problems caused by the immunosuppressant effect of the chemo.
Early in October (also not yet scheduled), Dr. Rosen will install a MediPort above my collarbone (an outpatient procedure) to minimize the possibility of iatrogenic infection and prevent vascular breakdown during chemo.
Once I'm finished with Adriamycin and Taxol (after 2/23/10), I expect Dr. Rosen to perform a second surgical biopsy, which Dr. Nickerson expects to be negative.
This will be followed by focussed radiation therapy in Keene under the direction of Dr. Levin (probably on a M-F for six weeks); I have a preliminary appointment with him at 12:45 on Monday, 10/5.
Then, I expect to take Taxol for the next 5 years (until 2015), as my machatenester, Sylvia, did. (She has had no recurrence.)
My cousin Carrie Mae, whose husband is undergoing treatment for prostate cancer, says that the anti-nausea drugs they gave him didn't work but ginger gelcaps did, so I'm planning to lay in a supply of those before I start, although Dr. Nickerson says the chemo they are probably giving Walt has much more severe side effects.
Miryam suggested that I look into alpha GPC (L-alphaglycerylphosphosphorylcholine, also known as choline alfoscerate), an acetylcholine precursor that aids communication between neurons, when I shared with her my concerns about the possible "chemo fog" that some patients experience, so I'll probably lay in a supply of that and start taking it beforehand, as well.
All in all, while the actual effect remains to be seen, nausea and weakness are likely to militate for a decrease in my level of activity between the middle of November and the middle of April, 2010.
As you might have guessed, I'm still somewhat up in the air, even after having been given the pathologist's report:
First, the bad news is that the margins were not clear, i.e., there were cancer cells at the molecular level out to the edges of the tissue that was removed.
The less-sensitive IHS HR2 test was inconclusive, and the definitive FISH (fluorescence in situ hybridization) test results still aren't back, but Dr. Rosen is convinced I will need chemotherapy and has referred me to Dr. Nickerson, a medical oncologist, who, once we get the report, will consider what kind of cocktail will best destroy those cells.
When the chemo is accomplished, Dr. Rosen will do another, larger lumpectomy to find out how effective the chemo was; if there are still cancer cells on the margins, I will have to have a mastectomy.
Only if I don't need the mastectomy will I have radiation treatments, and they wouldn't be done until after the second lumpectomy.
So now, I'm waiting for my appointment next Friday with Dr. Nickerson. In the meantime, I have a little breathing room.
The report was delayed because of the holiday, and Dr. Rosen is in surgery all day Thursday (the earliest they can expect to receive it), but his assistant agreed to try to get the report ON Thursday and get Dr. Rosen to call me between surgeries. I also have a call in to my primary care physician, but medical protocol being what it is, I don't know how much good that will do.
I'm home and not in any discomfort, although I have a drain in where Dr. Rosen did a lymph-node dissection. (Two of the sentinel nodes were malignant.) I'll see him again on Tuesday to debrief him. I doubt the pathologist will have had time to do the slides to determine whether I will need a more radical procedure, but I'm hoping the HRS-2 results will be in by then.
I have a lumpectomy scheduled for 5/3, but I'm not freaked out: It's small ( >2 cm) and estrogen/progesterone sensitive, so unless it turns out to be HERS-2 (which I'll find out Friday), I won't need chemo, probably only radiation and a hormone blocker.
Boy was I wrong! I didn't get the HER-2 report until September 21--and even though it was negative, I'll be having chemo.
Dr. Rosen, the surgeon at Brattleboro Memorial Hospital to whom my new PCP (GP, we used to call them) referred me, did another needle biopsy and found that behind the adenoma was lurking a small (~1.3-cm) carcinoma, so he scheduled me for a lumpectomy on September 3.
It showed a suspicious spot in my left breast at about the same place where I'd had a needle biopsy in 2000; that one turned out to be a (benign) fibro-adenoma, so I didn't expect anything different this time.