Thursday, December 22, 2011
Since getting my new lenses, I've been on top of the world. Having spent time at the bottom of the world, I not only recognize the top, I savor it.
Yesterday, one of my contacts was irritating me so I popped it out, cleaned it and popped it back in. About 2 pm, I decided to take it out again. I'm used to perfection. This time though, my eye really hurt, a 4 out of a scale of 1 to 10. I looked in the mirror and it was also red. I immediately called the Boston Foundation for Sight who recommended I call my primary care ophthalmologist. My call was returned and appointment set up for today.
I woke up this morning with my eye feeling normal. I went to see my doctor who pronounced my eye fine, except for a tiny lash sticking into my eye. She plucked it out and said I could put my lenses back in whenever I wanted. I did as soon as I got home.
Take nothing for granted. That old latin cliche is true. Carpe diem.
Thursday, December 15, 2011
My new eyes allow me to entertain with ease. Last night we hosted guests and tonight we will, too. As Mariel would say: woot.
Friday, December 9, 2011
The Foundation is an amazing place. It's no wonder my insurance company covered me there and not somewhere else. This is where the PROSE device was invented. They make the lenses on-site, so you get them within hours of your fitting. If you need a different lens, no problem. They made about 15 different ones for me, not giving up until they felt the comfort and corrected vision were perfect.
You have to be trained to remove, insert and care for these pricey babies, which are made of hard plastic and shaped like stemless margarita glasses. I got the hang of it pretty quickly and so was dismissed after Day 4. They want to profile me in their next newsletter, so they took photos and will interview me via email to get my story. There's always a story.
The margarita simile made me want to have one. No, not a simile. My friend Sue and former library colleague drove up from Rhode Island and we went to a Mexican restaurant. I had a chance to show off my Spanish to the waiter. The food was delicious--I had chicken in mole sauce, something I will never cook--and the margaritas were on special. Catching up with Sue on library gossip was fun, too.
Today, I pack up and take a train to New Hampshire to visit Patty and Jeff. I look forward to a nice quiet weekend among friends.
Tuesday, December 6, 2011
The right lens fit perfectly; the left irritated my eye. They inserted another lens in my left eye and that was better. I wore them for another hour, was evaluated by the doctor, and told to return tomorrow morning at 9.
I waited and waited for the hotel shuttle. I called and told them I was still waiting. Finally, an hour and a half later, the bus showed up. I was angry, but when I got back to the hotel, the receptionist apologized profusely and said she took $20 off my rate for the night. I used the money to pay for dinner at the Asian restaurant connected to the hotel. I was too exhausted to go any further. The food was surprisingly good.
This morning I had my first training session on insertion and removal of my new prescription lenses. It is not easy. So far I've been wearing them for an hour and I can see better than I've seen in years. The left lens is somewhat irritating. Once the doctor examines me, an adjustment can be made and I'll have the new lens tomorrow.
The computer gives me no vision problems; to read a book, however, I have to wear reading glasses. I'm not complaining. I've been wearing them for years.
Tuesday, November 29, 2011
Friends, family, doctors, and readers of this blog know that severe dry eyes have been my Achilles heel for some time now. Of all my symptoms, my eyes have prevented me from doing so many things. They also make me clumsy. And did I ever mention that they hurt?
I'll know more later but I'll be staying in Boston for about 2 weeks. I'm hoping to find an inexpensive room near the hospital, and I'm hoping that my Boston area friends might come visit me in the evening. Special shout out to New Hampshire and Rhode Island buddies.
On the doctor saga, my NY doctor never received a report from the Boston one. I think it's an administrative issue, so I named names. I don't usually like to do that, but my health is at stake. Anyway, we left it that she would contact him and they'd make a plan. But it won't be implemented until after I return from Peru in January. We're going to visit Mariel at the end of December.
My blood counts were impressive (normal) except for the reds, which remain on the low side (HG:10). I feel pretty good, though, and everyone says I look good. Today I get the stitches taken out of my cheek and hopefully get the green light for exercising again. I'll update soon.
UPDATE: The stitches came out and I'm healing "beautifully," as the doctor put it. I have an appointment in Boston for my lenses on Monday, December 5th.
Thursday, November 17, 2011
The procedure took a few minutes; the bandaging took longer. I have an inch or more of oval shaped white bandaging under my right eye, sticking out a quarter of an inch. I have to return today for either more scraping or stitches. I'm banned from exercise of any kind for at least a week. This will be difficult.
My NY doc still hasn't gotten back to me about the second-opinion findings. I call and leave messages every day. I want to march over there and confront her. I probably won't do that though. I'll call again today and try to be patient. Grrrrr.
Thursday, November 10, 2011
This is what I wanted to hear. Dr. Antin is going to send a report to my NY doctor with his recommendations. I suspect she'll go along with them.. Dr. Antin recommended a bone density scan (I had one a year ago) to see if the osteporosis has improved or not. There's another stronger med I can take for my bones. Really, I feel I have a rubber coating protecting me. I fall a lot and haven't broken anything but my spirits.
I asked Dr. Antin about altitude medication since I'll be going to Peru to visit my daughter in December. There is something I can take, but he said I can chew cocoa leaves and that will control some of the symptoms. Where do I get those? Oh, they just give them to you. You can also drink tea made from it.
Is there any doubt why I love this doctor?
Thursday, November 3, 2011
Having survived two transplants there, I am biased. The nurses and support staff are terrific, but it's my doctor who I believe is the best person to evaluate my pesky graft versus host symptoms. He's also great to talk to, about baseball, travel, fiction and of course transplant science. He's the director of the transplant unit at Dana-Farber, and it's easy to see why.
Enough fawning. I'm taking Amtrack to Boston early on Tuesday and have an appointment at the end of appointments which means I'll have a goodly amount of time to discuss and get input on my health. Maybe I can join clinical trial. Maybe my meds just need adjusting. It's a second opinion worth receiving.
I'll spend the night with friends in Providence and then take the train back on Wednesday. I can't leave Marty and Turbo alone for long because they get confused and can't find things.
Wednesday, October 26, 2011
I didn't really push myself, but I felt really good and strong. I've felt good all day, which is making me wonder if photopheresis was sapping my strength in some way. Tomorrow is the big dressing-free shower.
Then I loved the dog. He's ancient, rickety, and sometimes incontinent, but he's my pal.
Monday, October 24, 2011
The doctor, a cute Puerto Rican named Jesus, had to give me more Lidocaine than he imagined because the line was growing into my flesh. He also had to use a scalpel and clamp to finally extract the Frankensteinian device. My friend Jeff collected me after the procedure and we had breakfast. We stopped to get my new glasses (I can see into the neighbor's apartment across the street and watch their TV) and pick up a chicken for dinner. After he escorted me to my apartment, I took a two-hour nap.
I feel good and my back is healing. I can take a real shower in three days, but a semi-real one tomorrow.
Sunday, October 23, 2011
I hit the ground with a thump and a scream. Harry was in the room next to the kitchen and came running in. I had already curled up on my side, so I knew I wasn't paralyzed. I assessed the damage: a big bump on the back of my head and terrible pain in my lower back. Harry got me ice packs and stayed with me on the floor. He helped me get up and I sat on the couch for a little while, reading.
It only hurt when I stood up, sat down or climbed stairs. I broke down and took a painkiller, which helped some. It still hurts, and my attempt at running/race walking this morning was unsuccessful. I walked a mile. Why push it?
I was very lucky. I fell on a carpet. I wasn't seriously injured. Harry was there to help me do things. I vow to always to use a step stool and never to clean the top of a refrigerator again.
I write this as a cautionary tale for everyone, but leukemia survivors are at a greater risk for breaking bones and should be even more cautious.
Friday, October 14, 2011
The visit to my oncologist was more interesting. She agreed to having my catheter pulled, which I hope happens soon since I'd like to take a really long soak in the tub followed by a hot steamy shower. Mmm. Catheters can't get wet, and I can't be bothered by the elaborate plastic/ tape job you have to go through, where even less of your body gets washed.
I had requested my records be sent to Memorial Sloan Kettering, so my doctor thought I was leaving. I told her it was just for a second opinion, to get some fresh eyes on my case. I made an appointment to see her in two weeks. She made a good recommendation to me: get a second opnion at Dana-Farber because they specialize in chronic gvh. As you may remember, Dana-Farber is my old stomping grounds. I had my two transplants there and have all the confidence in the world in my doctor, nurses and the staff.
I sent an email to my former doctor at Dana-Farber and asked whom I should contact for gvh treatment, clinical trials and the like. He answered within hours, saying he was my contact. This made me feel like dancing.
On another positive note, my liver enzymes are going down since I've been taking Cellcept, a new (for me) immune suppressant.
Monday, October 10, 2011
I've contacted a different cancer center and hope to see a new oncologist pending their acceptance of my insurance. I told my oncologist I'm stopping photopheresis treatments and want to schedule having my catheter removed. I've done this treatment for 8 months now, twice weekly, with no measurable benefits. My skin is worse than ever.
I called my ophthalmologist and requested they send my records to the Boston Sight Foundation so I can apply for financial aid for the PROSE lens. My insurance company won't pay for it in NY and there's a chance they will in Boston. If accepted, I'll spend 2 weeks there getting fitted. Since this is the worst quality-of-life issue I face, I plan to push for it.
There comes a time in every chronic illness where you say, that's it. You put your faith in the medical community and believe they'll do everything in your best interests. Now I see that's not necessarily so.
Wednesday, October 5, 2011
Taking advantage of the energy, I ate some oatmeal and went out for a run/walk. It took me 1:26, but I covered about 4.5 miles and felt great. After showering and video-chatting with Mariel in Peru, I grabbed the shopping cart and walked to Fairway on 86th Street. I was feeling a little low-energy by then but Cliff Bar came to the rescue. If you're wondering, cliff bars are high protein and sugar yummies athletes use to fuel themselves. If you've been to Fairway, you know why I needed one. My arms got quite a workout dragging the groceries behind me as I walked home.
I still feel good and here it is after 2 pm. I'm guessing it has to do with all the love I've received from family, the amazing support my running coaches and blog-readers have given me, and the increase in prednisone my doctor okayed on Monday. I doubled my dose from 10 to 20 mg and for the first time, I'm thrilled to take a higher dose. Naturally, it's not good for the future me (bone crumblage mainly), but it's good for me right now. If it allows me to run more, feel like a real person, and keep me from going off the deep end mentally, I accept the risks.
It's my deal with the devil. I'll get off the junk some day.
Monday, October 3, 2011
I told the doctor the saga of the kidney stone, the pain, the blood in my urine, and an unusual feeling in my bladder that makes it seem like I have to pee constantly. It's different from the Lasix urgency, but added together, I feel I can never be far from a bathroom. She had me do a urine culture and gave me a referral to a urologist for a cystoscopy, a procedure that allows a bird's-eye view of the inside of the bladder. What will they be looking for? Bladder stones, infection, structural abnormalities, foreign objects--I don't want to know about foreign objects, especially if it's my long-dead fetal twin.
Oh, and they also check for cancer by scraping cells from the top layer. I've never had this procedure done, and I'm not looking forward to it. I'll make an appointment tomorrow after I see the skin surgeon.
In the ho-hum category, my oncologist told me to stop taking rapamune (sirolimus) after over two years on the immunosuppressant. I asked if I should increase the prednisone (from 10 to 20 mg.) and she said it wouldn't be a bad idea. She's concerned about the future of my bones, but since my quality of life is currently in the toilet, it's worth trying to see if the increase can help me function like a real person again, not someone sitting in the back row of my life.
Saturday, October 1, 2011
One thing I've always been thankful for is that my skin gvh has left my face more or less alone. The very first presentation was on my face, but after my Boston doctor upped my prednisone, it went away and never came back. When I left the dermatologist's office, I had two small band-aids on the scraped areas. When I removed them the next day, they were raw and ugly. Both have healed nicely though, the larger spot looking like a mole, but shrinking every day.
The dermatologist called yesterday with the biopsy results. The larger spot (thought to be gvh) is a basal cell carcinoma; the smaller, melanoma.
Back in the good old days, before cancer walked in the door, I'd had a basal cell carcinoma removed from my shoulder. My dermatologist at the time calmed any fears I was having (I had a few) and assured me that this wasn't going to kill me. When I received my leukemia diagnosis, I was too stunned to feel much fear. The real fear came when I was told I'd relapsed.
So the cancer on my face is more of an annoyance than anything else. Even the melanoma is very fresh and once removed, will be gone for good. I'm not looking forward to having surgery on my face, only because I'm vain. My dermatologist assures me that the surgery I will have, called Mohs surgery, works very well on the face because they shave thin layers off and get the biopsy results back almost immediately. They cut and biopsy until there are no cancerous cells, which means less tissue is lost.
I meet with the surgeon this week. My feelings are mixed on this newest health blip. If nothing else was wrong with me, I'd just chalk it up to something most of us will face as we age, another chink in the armor. My armor is in shreds.
Visit your dermatologist once a year for routine check ups. If you suspect something, don't wait for that yearly screening.Just go.
Friday, September 30, 2011
My rational self ridicules this line of thinking. For a guy who runs 75 miles a week to feel tired and weak, it's quite a stretch to think he might have a horrible disease. But my mind was stretched in March 2006 when I was told by my doctor that my blood work indicated I had acute leukemia. My only symptom had been a swollen finger.
It turns out, my son is anemic. He takes a liquid iron medication and has started training again. He doesn't feel 100% yet but he doesn't have leukemia.
The panic didn't stop there. On Wednesday, I began to feel really tired right after lunch. It was nothing specific, and my first thought was that all my physical symptoms were dragging me down mentally. This is not unreasonable. Then a little voice inside my head said: take your temperature. It was 100.2, a low-grade fever. Three hours later it was 100.4. I didn't feel sick so much as weak. And scared. Why did I have a fever? I didn't have a cold or any other fever-inducing illness, as far as I knew. I was a limp rag (is there any other kind?), and the closest thing to my mind was leukemia.
The next, morning, my temperature was 99.2, and then 99.4. Physically I was better; mentally I was a wreck. Physical exercise improved my mood, but it was two 98.7 readings in a row that made me think, maybe I don't have leukemia.
Maybe. After two cancer-free years, I still feel the occasional dread. Sometimes there's an obvious connection such as a fever or new symptom. Sometimes, it comes out of nowhere and I don't even realize why I'm feeling so blue. Last week, it was my son's blood test. The week before it was the news that a 4-year survivor had relapsed. It's always something.
Thursday, September 22, 2011
A large part of this was mental. Sure my eyes were dry, my skin itched, my kidney stones which seem to have descended into my bladder were awake and kvetching. I was wearing someone else's feet and I walked like a gorilla, arms heavily dangling by my side. I tried to focus on the dinner I was preparing for guests, old friends we've known for over 20 years and are similarly bleeding tuition money. I was making roast chicken, comfort food.
I washed some prep materials and looked at my hands, which were fat and blotchy. Something needed to be done. I dropped the dish towel, walked across the street, and had a manicure. I spent the hour drifting in and out of various consciousnesses. When the petite young woman massaged my hands, I was transported back to the days of Russian manicurists who wrenched and pounded and otherwise inflicted pain. This woman was good, though. She somehow reshaped my hands so they looked normal. Those were my hands, nails dressed in a pale pink.
I floated back to my apartment and resumed my cooking, trying extra-hard not to mess up my nails. I forgot, briefly, that I didn't feel like myself. My focus was drawn elsewhere. The evening was a lot of fun.
Tuesday, September 20, 2011
I've lost my prednisone puffiness as well as some of the water weight that's been making me blimp-like for the past few months. I wouldn't say I feel spry, but I've traded the cement boots for lighter footwear. I still have fat little baby hands, which would be adorable if they weren't covered with red splotches and scales.
I have yoga today, which is always a treat since I stretch my contracted tendons/ligaments and muscles to the point where I feel almost limber. Namaste.
Monday, September 12, 2011
Bad: My nurse called me last week and said that when I came in for my treatment the next day, I'd need a transfusion. Once I started breathing again, I asked why. I haven't needed blood in 18 months or so. She said my hematocrit had been trending downward, and this would give me a boost. You know what I was thinking, right? She assured me it was nothing to worry about and that they see this all the time in patients with graft vs. host disease. Plus, prednisone could also be a culprit. I took a deep breath and decided to trust her.
Ugly: My wrists and ankles, which have scaly red splotches that flake off wherever I sit for a moment no matter how much cream I apply. Why can't my liver look like hell and my skin be asymptomatic?
Sunday, August 28, 2011
Yes, there was wind and rain, but no more serious than an ocean storm, of which I have experienced at least 50 or so. I am an East Coast Girl. Speaking of which, how many places get to experience an earthquake and hurricane in one week? Both were pretty lightweight by anyone's standards, but still. We're due for a volcano but I don't think we'll squeeze that in by Tuesday. Volcanoes are a long time in the making.
One way I spent my time was writing emails to people asking them to support my run for the Leukemia and Lymphoma Society. I made $450 today! I'm 95% to my goal.
Virtually nothing is open today, including the subways. Commerce in Manhattan is dead. I took a walk and was amazed that the only stores in business were small grocery stores and newspaper stands. You cannot find milk, bread or water. Speaking of water, I forgot to fill my bathtub with flush water. I did, however, fill it with gin. I'm a poor survivalist.
Actually, I'm quite good at surviving. Marty voluntarily left me here alone (save for Turbo), and drove upstate with Harry yesterday. He kept saying he felt bad leaving me alone during such unpredictable times, but knew I'd call someone if I had an emergency I couldn't handle. I don't know how good I am at emergencies, but I'm extremely adept with handling whatever is blown my way.
Wednesday, August 24, 2011
A scraped palm and some gravel pitted in my knee were all I had to show for my tumble. I wish I could say it was a freak accident, but the truth is, I'm weak and clumsy. The remainder of the ride I managed to do upright and in control.
I must have done some internal damage though, because a day or two later, my side ached and I couldn't take a deep breath. Certain movements were extremely painful, and deep breaths, coughing, sneezing and laughing were out. It's improved significantly; I'll be more cautious in the future.
I'm a normal person with everyday physical complaints. I have kidney stones and I wrenched a muscle in my back. There's nothing like pain to get your mind off dry eyes, leprotic skin, muscle weakness, tendon tightness and mysterious liver issues.
I'm pretty lucky. You're lucky, too, because I was going to bore you about plate tectonics in wake of yesterday's "East Coast" earthquake. In relation to personal quakes past, this was underwhelming.
Friday, August 19, 2011
My doctor wants to do a biopsy of the liver to confirm gvh and proceed from there. I may have to increase the dreaded prednisone. Currently at 10 mg, I'm hanging by a thread anyway. My skin has a leprotic look to it, although my face and trunk have been spared.
In the meantime, I'm in the country training for the marathon and wrestling with the gangly shrubbery. I think I'm winning. Today I hope to get out there and weed the perennial beds. I have a foam cushion for my delicate knees. It beats trying to squat or bend over and risk looking unsightly. You never know who's peering out their window at my backside.
Monday, August 8, 2011
It's strange to think my liver might be in worse shape than Keith Richards'.
Thursday, August 4, 2011
My first reaction was a sinking feeling in the pit of my stomach. Many of you know what this feels like. I went on line and researched what hepatology is. A hepatologist treats liver diseases and disorders. I know my liver issues relate to my transplant, and that the graft versus host disease that plagues my body tissues means my donor is doing his job. I'm coming up on my 2-year anniversary next week, a milestone. I remind myself of this every time my eyes get so dry I feel they're being poked with needles, or my body swells with an extra ten pounds of water.
These problems haven't slowed me down. I spent a week in France and Spain with my daughter last week. The France part was relaxing since we stayed with friends at their country home outside of Toulouse. The 2-day Barcelona whirlwind almost did me in, but I had fun and managed to survive. We ate a lot, walked a lot and saw some amazing things.
After a week of not training for the marathon, I went to a hill workout Tuesday night and walked away without limping. I plan to run for 45 minutes this morning while it's still cool. I'll let you know what Dr. Liver has to say.
Monday, July 18, 2011
No dancing in the streets yet. My skin gvhd has reached a new level of misery, prompting the need to up the prednisone and apply a steroidal cream to the affected areas. I'm also up to 60 mg. of Lasix to knock me down to size. So far, it's working: I lost 6 lbs. over the weekend. I've already tapered back to 40 mg., so we'll see how it goes.
I saw my doctor today and told her I'd run 7 miles yesterday. I asked her point-blank if running the marathon was a bad idea. She admitted to never knowing anyone in my condition that's run a marathon, but I sense she doesn't know many marathoners. I only know a handful, one being my son.
What about all those marathoners without legs?
Tuesday, July 12, 2011
As for fundraising, please visit my Team in Training site if you haven't already done so. There you will find the secret to my running "success."
Tuesday, June 21, 2011
We went out for brunch, I made a dinner with some of Marty's favorites, including an adaptation of his beloved Kahlua Pie. The original recipe calls for a melted bag of marshmallows (minus plastic bag) for which I substituted ice cream and whipped cream. All was well until I had to put the pie in the freezer. My freezer, a side by side model, isn't wide enough for the pie plate. I put it in the refrigerator for hours in hope that it would solidify enough for me to tilt it. No such luck.
Marty had the idea of cutting the pie into slices and freezing it in two small pans. So much for surprises. The moral is, according to my learned children, check the width of your freezer before putting something in it. This is especially true in a Manhattan apartment
Surprise news: Mariel got a job in Peru for a year as a tourism director for people who want to volunteer in Peru. She'll be living in tourist housing and get full board, airfare and maybe not much else, but she is psyched! She plans to apply to graduate school for the following year. I'm already missing her on Thanksgiving.
Friday, June 17, 2011
I made the decision to stop taking the exjade, which makes me feel like a helium balloon and keeps me tethered to the loo. Since I've already off-loaded 6500 units of ferritin from my liver, and am fairly close to "normal," I thought I'd give myself a break. My doctor agreed. I thought this would help my digestive track. There is no change.
I think the good bugs in my digestive track are all on vacation. I remembered that Dr. Antin suggested probiotics for this issue last summer. I went into the local health food store in RI and asked for advice on which one to get, since there was a dizzying array of choices. I had no idea this was such a big problem. The woman launched into an epic description of all the probiotics they carried. My eyes glazed over. I perked up when I heard how expensive these pills are. So I went to CVS and found something much cheaper. I still have some. It's called FloraSmart and has 6 billion organisms per caplet. I plan to go to the local pharmacy here in the country and see what the pharmacist thinks I should take. I hope this works because I have enough gvh-related problems.
For those of you who haven't fallen asleep, I offer this tidbit of information I gleaned from Steven Pinker in an essay he wrote about the human genome and personality. Genetics are almost everything; environment, including culture, how your parents raised you has a small impact, but not as much as most people think; luck plays a small but important role, maybe 1%. Take my son Mark. Genetics made him a great runner. His ancestors include some very good runners. I encouraged Mark to run a 5k when he was 9 and he won for his age group. He ran the race every year and got better and better. Luck brought him to Rhode Island where he didn't make the soccer team so joined cross-country. Had he not moved from Costa Rica, where soccer is king and running isn't a school sport, he'd be a different person. He lives to run. It defines him in so many ways.
Wishing you good bugs and good luck.
Thursday, June 9, 2011
Dori Brown died June 7th, 2011 at the age of 43. She battled acute leukemia for four years, having a stem cell transplant that extended her life measurably. Unfortunately, the leukemia came back and she couldn’t get another transplant because she couldn’t get back into remission.
I never met Dori, but we are part of a sisterhood of leukemia and transplant. I came to know Dori through her husband’s blog, runfordori.blogspot.com. Jim wrote about how running helped him cope with Dori’s illness. He ran for Team in Training, raising funds for blood cancer research. He also wrote about his love of good food and wine, his children Kathryn and Will, his dog Pepper and the trials and tribulations of being a man in the 21st century. Jim revealed his frustrations with himself and with life’s challenges. A deeply religious man, he had a faith that was always apparent, but never forced. You could pray for Dori, or not. He wanted that connection, but didn't require it of his readers.
You can say I know Jim better than I knew Dori. But Jim is how I came to know this warm-spirited, big-hearted woman with an amazing smile. Dori liked to hike with her family. She raised money for cancer research. She became a Teaching Fellow after her transplant. I called Dori one day to ask her about the program, which I too had applied for and been accepted into. This is the only time we spoke personally. She gave me good advice, advice that meant more coming from a fellow survivor.
Dori fought the good fight, a fight I well understand. The worst part of the struggle isn’t the nausea, the pain, the fear, the boredom. The worst part is the mental anguish that comes from watching loved ones worry. Leaving this life is hard; leaving your family and friends exquisite torture.
I think about you a lot, my friend, especially as I run. I hope my little effort to raise funds for the Leukemia and Lymphoma Society bears fruit in the future, putting an end to this disease. Your smiling face will be on my race jersey as I make my way through the streets of New York, lighting the way.
Monday, June 6, 2011
Tuesday, May 31, 2011
Thanks for your help.
Friday, May 27, 2011
Fasting blood sugar was within the normal range at 93. Cholesterol is still high, 354. I may be on Lipitor for life. This is a condition due to the transplant and not gvh. I'll take it.
We're off to the country this weekend for some west and welaxation. BBQ by the brook, a little fishing for Billy Bob and Joe Pete. Grass for Turbo, whose birthday it is today.
Happy Birthday Turbo, you 14-year old man!
Saturday, May 21, 2011
HOWEVER, gvh has a positive side in that while your donor is kick-boxing your cells, he or she is also fighting any remnants of leukemia that might be lingering in the body. Treat it you must, but in the end, you shake hands and carry on.
Over time, gvh rides off into the sunset. It can take five years, but the chance of leukemia rearing its ugly head again are remote.
Sorry for the bio lesson. I hope you enjoyed the mix of metaphors.
Friday, May 13, 2011
You can take our bodies but not our souls.
Love to the Brown Family.
Tuesday, May 10, 2011
Mark ran a great race, coming in second to a senior from Princeton. He now goes on to the regional championships in Indiana in 3 weeks. I'm so proud of him.
We took a taxi to Frank Pepe's Pizzeria and gorged on the best pie this side of NYC. They are famous for their clam pie, and it did not disappoint. The flavor lingers long after you've left New Haven.
Harry came back with us to New York and spent the night in our new apartment. He'll be spending the summer here and was excited to see his new room. While he slept until 11:30 am, I went to the hospital for my treatment and to see my doctor. Blood looks good, 5.6 wbc, 11.2 hgb, 113,000 platelets. Liver numbers are down, as is my ferritin count.
Harry and I lunched in a Turkish restaurant nearby. We had felafel and shared the most heavenly baklava I've ever eaten. Then we headed off to Grand Central so Harry could get back to school for final exams. I came home and did laundry, errands and more unpacking. By 5 pm, I decided I'd done enough for the day. and sat down with a plate of cheese and crackers.
There's always tomorrow.
Monday, May 2, 2011
No tears this weekend, but crying. On Friday I watched Mark run the 1600 meter anchor leg of the distance medley relay. Why so emotional? Two years ago, I went to the relays to watch Mark and received a call from my doctor saying I'd relapsed. Then I had real tears. Yesterday, I logged onto Jim's site to see that Dori was hospitalized with a fever. Marty and I both cried, but Marty had tears.
May all your healing power be directed at Dori. She's a tough one and will kick this monster to the curb.
Wednesday, April 20, 2011
Let's get the numbers over with: wbc: 7; hgb: 10.3; platelets 132. Ferretin level, liver enzymes and cholesterol are all sticking where they were.
I'm lowering the prednisone by 2.5 mg per day, not much but something. I'd better sharpen my knives. I'm going back on the bp med, 5 mg per day.
I finally found a new internist I can live with. She was very thorough, personable and took my medical history in stride. She told me to start the Lipitor again, change my diet and exercise more. I ain't giving up butter.
I had photopheresis today. They now have a faster machine so I only sit there for 2 hours. Still, I manage to nap, make phone calls, read and chat.
The weekend was spent pleasantly in Landenberg, PA, mushroom capital of the world. We stayed with Marty's sister and Mariel came with us. The seder was great. Too much food. If you've never been to a seder, here's what you eat: lots of wine, matzo, horseradish, haroseth, parsley dipped in salt water, potato in same water, hard-boiled egg in same water. The festive meal included gefilte fish, chicken soup with matzo balls and noodles, brisket, chicken cutlets, squash, ratatouille, asparagus, cranberry jello. Dessert was a nauseating display of candies, sponge cake, chocolate covered nuts, mandel bread and other things they took out long after I went to bed.
If you think one seder is enough, you'd be wrong. We went to Sandy and Dianne's for seder II, with different foods. The best news is, I didn't gain a pound!
Thursday, April 14, 2011
Wednesday, April 6, 2011
I went to the bank to get checks for the new apartment on East 80th Street. It's walking distance to the hospital, spitting distance to many stores and restaurants. Then I walked a few more blocks to see my broker and seal the deal. I've still got the prednisone energy, which I'll use to pack. It should be any easy move since we can take breakables up in advance. I'm hiring a mover this time. Let them do the heavy lifting. I've had it.
Monday, March 28, 2011
My blood counts are good: 6.5 wbc; 11.3 hct; 117 platelets. My iron level is stuck at about 2000, down from 8000 but it needs to get closer to 300. My cholesterol is still up there, as are my liver numbers, so I'm temporarily stopping the Lipitor. The blood pressure drug is doing its job--I now have normal to low bp.
But it goes up when I have to deal with things like this. One of my very special eye drops prescriptions which are supposed to last 30 days and cost $128 has run out after just 4 days. If you have money to invest, buy these drops instead of gold, because you will make a fortune.
I saved the best news for last. I'm decreasing the prednisone by 5 mg per day.
Thursday, March 24, 2011
Taylor had her share of bad karma, like we all do. You can argue that hers was on a grander scale, and her charity work is something we can all aspire to. You have to admire this woman. I do.
I've been stuffing as much as I can into my less-glamorous life over the last five years. I've sent my three chrildren off to college. My husband and I weathered his 9-month long unempl0yment. We purchased a farmhouse in Sullivan County. We moved to an apartment in Manhattan and are looking to find a 2-bedroom for May 1. We finally have an offer on our Rhode Island house. I don't plan to go out and buy a sparkling rock for my finger; I look forward to wearing my wedding ring when my fat finger slims up.
Notice I haven't used the word leukemia. I saw a new ophthalmologist today who put me on a new regimen of drops. He also plugged my tear ducts with extra-large plugs. It's the the only part of me (beside my ego) that's not petite.
Five years ago today, I was diagnosed with leukemia. I may be badly bruised, but I'm not beaten.
Saturday, March 19, 2011
Two patients who occupied the chair next to mine, although not at the same time, demonstrated once again how we who are fighting blood cancer are never alone.
The first patient was a young man, 27, who was donating his stem cells not to a particular person, but just to donate. Hurray for him! He was there to get his first neupogen shot and his schedule for donating. I thanked him for what he was doing, telling him I had received stem cells from an anonymous donor.
The second patient was a middle-aged Hispanic woman who came with her daughter. She was visibly nervous, and I don't blame her. She was getting a neupogen shot to stimulate cells for an autogolous transplant. She has multiple myeloma. She was very nervous about having a catheter installed. I showed her mine and said although it was ugly, it would help save her life.
I walked out into the bright 70-degree sunshine wearing my ultra shades. Ah life.
Tuesday, March 15, 2011
Leah was a writer and a damned good one. She wrote book reviews, plays and television screenplays. She had an imposing sense of humor and used her words to bring down the high and the mighty. She loved her cats and her life as a writer. There was so much left to write.
If Leah's moms Arlene and Martha are reading this, my thoughts are with you today. Leah was a rare one.
Saturday, March 12, 2011
I'm talking about my insanely dry eyes. I know you think it's a dead horse, but it's not. There's still plenty of life in my baby blues, just no water. Fortunately, when I open my eyes I can see. The problem is, I can't open them too often, which severely cramps my style. By 9 pm, they're toast and I have to go to bed. If we're having dinner at someone's house, like we are tonight, I have to recline on the couch with my eyes closed. Sometimes I drift off in mid-sentence, and I've been told I snore.
Not wanting to take this lying down, I've made inquiries. It looks like I have two options: use blood serum or get scleral prosthetic lenses. Blood serum sounds icky but it is said to work. A bit of my own blood would be used to make eye drops that would use my lymphocytes to counteract my donor's. I keep thinking they'd be red and I'd look like a vampire, but of course the red cells are removed.
I plan to discuss this with my doctor the next time I see her. She's been in Hawaii for three weeks.
Tuesday, March 8, 2011
I was only able to do my labs and see the doctor. Marty started a new job yesterday, and the company is changing insurance companies. I'm covered, but there's no account number yet. This meant I had to cancel my photopheresis treament. My numbers were all good: wbc: 7; hgb, 11.3; platelets: 113.
One of the hospital administrators said she's look into having me pay for the treament with a credit card and then be reimbursed. It turns out, each treatment costs $10,000, so that wasn't an option. A woman who was sitting next to me excused herself for overhearing the conversation and adding her two cents. "Honey, they have to give it to you for free." She was elegantly dressed, with bright red lipstick and perfectly coiffed hair. I'd say she was around 75. She started complaining about how tired she was, and that you have to have so much patience for this. I said that I'd learned to be patient during my illness. I decided to leave rather than talk to her some more.
Because I got home so early, Harry and I did a little shopping for clothes and a new cell phone. Today we plan to go up to Macys, not that we want to buy anything, but we want to go to Gyro II for the best gyro in the world.
Wednesday, March 2, 2011
When I think of all the rough times we've had over the past five years, it seems like the tide is finally turning in our favor. Marty was out of work for 9 months. He just left a job for a better one. My medical bills have been high, and I've only been able to work for 21 months since my diagnosis. We maxed out our credit cards and borrowed money from family and friends. We couldn't sell our house in Rhode Island, which costs us over $3000 monthly to pay for the mortgage, utilities and insurance. Naturally, none of the money woes compare to the fight against leukemia.
I'm going to use my disability payments to pay down debt. Maybe Marty and I will go out to a really nice restaurant to celebrate. We have so much to celebrate.
Thursday, February 24, 2011
I've been exercising every day, either jogging outdoors or biking at the gym. I also do core work and stretching. Yoga is great though, my favorite exercise. I only go to classes though when I'm at my country place, which isn't often enough. I can't afford Manhattan prices, and I need a drill sargeant to make sure I stay on course, something I don't get from the yoga channel. My leg pain is starting to ease up. What a wimp. This reminds me of my neighbor at the lab Tuesday who was so generously donating stem cells but whining the whole time. They had to give him two Ativans before they could begin, and then once the needle was inserted, he complained of pain and asked for Tylenol. It was really comical, but not to the nurses who were exasperated by his neurotic behavior. Saint Kvetch was still moaning when I left.
After being on hold for over an hour with the Rhode Island DMV (I even took a shower, wrote emails and got dressed while waiting), I decided to go out and do a few errands. I dropped a book off at the library, went to Borders which was having a fire sale at my branch since it's due to close, and went to the drug store for some heavy duty eye drops. When I got home, an hour later, the line on my phone was dead. I guess I got through after all.
Sunday, February 13, 2011
Today I'm back.
The inspiration came from my son Mark. Last night we went to see him run the mile uptown at the Armory. The race was rabbitted, meaning that another runner set a speedy pace for the first 800 meters. Mark had been in second place for most of the race, alternating the lead with a fellow Lion. Before the race began, and to clear my racing mind, I made a vow to myself that if Mark broke the 4-minute mile, the holy grail of running, or even if he didn't, but he won, that I would start jogging again. Mark won in 4:07.88, a personal best.
Early this morning, I found my warm running clothes and double-laced my sneakers. I had no idea how this was going to go down, but I set off in 29 degrees determined to go a mile. Heading south, I saw Lady Liberty lifting her torch to me. It was cold and windy, but I felt good. It took me four times longer to run a mile than it had taken my son (plus I picked up the weighty New York Times as I neared the end), but I was proud of my effort, almost as proud as I'd been last night at the Armory.
Wednesday, February 9, 2011
My son Mark turns 20 today. The video shows Santa Lovey singing Happy Birthday. Lovey was a really soft stuffed bear that Mark slept with every night when he was little. When I saw the identical bear in a toy store, I bought it as a back-up. This was fortuitous because one night Lovey I was involved in a vomit incident. Lovey II came to the rescue. Eventually, Lovey I and II were indistinguishable in appearance, but for the fact that one was softer than the other. Then, our dog Spree attacked one of the Loveys, biting off his ear. This Lovey needed a makeover anyway, so I sewed an outfit on him, not intending for him to look like Santa. He became Santa Lovey.
Both Loveys traveled with us to Costa Rica. Mark took non-Santa Lovey to preschool one day and he (Lovey) never came back. Thank goodness for Santa Lovey, who we placed under house arrest. He returned with us to the States, but spent most of his Rhode Island years in the closet. An 11-year old doesn't want to be seen having a Lovey. When I was packing up Mark's room last summer, I discovered Lovey buried in the closet. We took him up to our house in Jeffersonville and placed him on Mark's bed. The reunion at Thanksgiving was uneventful. The last time we were at the house, Marty made the video.
We sent the link to just three people, all family. Even so, Mark is going to kill us. I thought it safe to share with you guys, to bring a smile to your faces on this frigid February day.
Saturday, February 5, 2011
As I type, I'm coloring my hair. It's not nearly as thick as it used to be but the gray is starting to bother me. I'm trying to shore up the wreckage of my once strong, nimble and balanced body, and I'm clothing it in somewhat fashionable items that go beyond baggy sweatpants and loose tops. I bought myself a mauve sweater this week and a pair of purple shoes. So there.
Yesterday, I applied a little make-up, just enough to boost my ghostly pallor. I wasn't going anywhere special, the hospital in the morning for my non-spa treatment, later on to the Armory to watch my son race. The effort made me feel good, and no doubt look a little better.
Pizza and a movie ended my day. Better go rinse out the color.
Wednesday, February 2, 2011
But you know I will. I need to shape this day beyond the food I plan to eat. If I don't get out of the apartment all day, I feel trapped and useless. I plan to visit the local library and do a little research, followed by a stop at Gristede's to buy some taco shells for dinner. We're priming our bodies to handle the garbage we plan to feast on during the Super Bowl, Buffalo-style chicken wings with celery and blue cheese. Marty wants to deep fry some other foodstuffs as well, maybe the pickles.
It's time I start slip sliding away.
Friday, January 28, 2011
It's been a long time since I've had to get up early to go somewhere. Usually I just hang out in my jammies and drink coffee before ambling off to the gym. This morning, I was due at the photopheresis center at 8 am, so bounced out of bed at 6:30.
Here I sit, hooked up to a machine which is draining me of some of my blood. This will be treated with UV light and returned to me. The process takes about 3 hours. To entertain myself, I've brought my laptop and the Keith Richards book. I also have my cell phone if anyone feels like chatting. I can always nap.
Maybe I'm reading a lot into it, but it seems my eyes have been a little less dry since the first treatment. One of the side effects of these sessions is that you're tired the next day. I didn't experience any more sleepiness then usual.
When I leave here today, I have to wear movie star sunglasses to protect my eyes from UV light, along with 85 sunblock on my face. This sensitivity lasts for 24 hours, so I will be walking around Jeffersonville tomorrow looking like a druggie, which in that hippie town is not so unusual.
Look for the girl with the sun in her eyes and she's gone.
Tuesday, January 25, 2011
My blood was sucked out and sorted into components. The T-cells were isolated and treated with UVA light. Most of the blood was returned to me. T-cells are the white blood cells that are attacking my body, keeping it leukemia-free but wreaking havoc on various body parts and systems. Photopheresis is a non-toxic way of handcuffing these bad boys and keeping them in line. Soon I will be weaned off steroids, which are bad for you long-term, and treat symptoms, not the disease itself.
For 24 hours post-treatment I am very sensitive to sunlight, especially my eyes. If I go out today, and I plan to, I get to wear these very cool sunglasses. Of course, right now, it's snowing so I think I can safely leave the apartment without them.
Friday, January 21, 2011
So I had my port installed yesterday and all was well. Saw my doc and my blood counts were good. Even my liver enzymes are improving. Marty made me dinner and we watched repeats of the Daily Show and the Colbert report. I went to bed around 9:30, having popped an oxycodone for the slight pain I was feeling around the incision. Say yes to drugs!
Two hours later, I awoke to a bloodbath. I exaggerate. It was difficult to say where the blood was coming from because the dressing was blocking the view. It wasn't pouring out so much as seeping. We made a plan to go to the hospital first thing in the morning to have it checked. In the meantime, I sat upright in a chair and applied pressure to the wound.
Marty became more nervous by the minute. We went through a lot of paper towels. Finally, we decided that since there wasn't really much on TV, we'd go to the hospital before the snow hit. We couldn't find any tape to hold on a stack of paper towels, so we did something even better. I highly recommend this technique for anyone bleeding in the middle of the night who doesn't want to soil their clothing. Cling Wrape to the rescue!
We placed a towel over the gore and Marty wrapped me up like a leftover. We hopped in a cab and went to the ER at the hospital where the line had been placed earlier in the day. Freak show!Everyone and her mother wanted to find out more about me. They'd never seen anything like it! My treatment consisted of applying pressure to the bleeding site, which was probably just a broken blood vessel.
My accomodations consisted of a gurney in a hallway where anyone who wanted to could see my boobs. Not that anyone wanted to, because all of the patients were in much worse shape and demanded the attention of the medical staff. It was like being in a psycho ward, with much screaming and very bad smells.
Hours later, the bleeding staunched and with a new dressing, I was discharged into the dark snowy night. You can't make this up, and why would you?
I took another oxycodone and slipped into bed and unconsciousness. I plan to stay in my pijamas all day so I can nap at will. I'm going to have some breakfast now, and try to stay out of trouble for the rest of the day. Or at least until Marty gets home.
Wednesday, January 19, 2011
Marty will take the day off and escort me to the hospital. Then we'll probably do lunch before seeing my oncologist. Except for my eyes, I've been feeling pretty good lately.
I totaled our medical costs for 2010 and arrived at the sobering sum of $11,300. We'll deduct this from our taxes, but with little income, it won't amount to much. Maybe a hill of beans.
Fortunately, I have some good drugs to numb any discomfort I feel once the anesthesia wears off. It's usually not too bad, but then I'm usually in the hospital after this procedure, getting ready to tank up on the toxin. There, the drugs flow freely and since you have nowhere to go and nothing to do, you can slip away to a place where there's no pain, where leukemia doesn't exist.
Friday, January 14, 2011
I contacted a literary agent and pitched my idea about writing a book about my experiences with this dreadful disease. This isn't the first agent I've made a proposal to. I spent most of last Spring recycling polite rejection letters from all over the country. They loved my idea, but didn't handle books like that. Am I too hot to handle? Some like it hot.
Photopheresis treatments will have me tied up for the forseeable future. It will give me world enough and time to spend pouring my thoughts onto paper, er, the computer screen. From shocking diagnosis to body-altering treatment to relapse, stem cell transplant, relapse, another transplant to my recovery and recurring health issues, it will be a tell-all tale of misery, madness, magic and mojo. It has Oprah written all over it.
I know I can count on your support, including the purchase of many copies to give as inspirational gifts. This may put a dent into the devastating expenses I've wracked up over the past five years. I can dream, can't I?
Tuesday, January 11, 2011
The media is trying to cow us by fanning the snow fire. We may get a foot (or more!), or we may get a few inches. Marty says we should ship milk, bread and eggs up to Rhode Island where they fear snow more than nuclear meltdown. New Yorkers can be cavalier about disaster because we can pick up the phone and call for our favorite take-out regardless of how impassable the streets might be. I've almost been taken out several times by delivery personnel careening down sidewalks and streets. Ah, the price you pay.
One of my favorite bloggers came for lunch yesterday. We have so much in common, we joke that we are doppelgangers. It was so nice chatting with someone who recognized that living one day at a time, taking baby steps and otherwise dealing with cancer fallout is not as rewarding as it might seem to those who don't suffer from chronic side effects. Others mean well but they don't look like chipmunks, their livers behave, and they don't appear to have leprosy.
No word yet on when I will become the bride of frankenstein once again. The earliest I will get the catheter implanted is next week.
Time to walk the most famous dog in lower Manhattan, the Big Turbowski.
Friday, January 7, 2011
Because I hadn't had lunch and was starving, I dashed out for some street food. Because it was freezing, I stopped at the first one I came upon and bought a hot pretzel. Pure cardboard. I should have opted for the hot dog.
Next stop, my oncologist's office. My blood counts are fine, the iron is off-loading again from my liver (which is still terrorizing my metabolism), and my cholesterol count (non-fasting) is down to 255. They may have lost the jug of urine I lugged in from my 24-hour pee-fest. It probably went to the cafeteria instead of the lab.
I have an appoinment with my opthamologist next week to figure out what to do with my eyes. I'll probably also have the catheter implanted in my chest so I can start photopheresis. This is not how I imagined my life in New York, but it's a life.
Wednesday, January 5, 2011
It seems I'm producing no tears and my eyelids are swollen. The best treatment is to put a cold washcloth over them. It's cheap and effective but doesn't allow for much mobility. For the record, I'm using Restasis, lubricating drops and taking 2 teaspoons of flax seed oil per day. Yes, it tastes vile.
I have an appointment with my oncologist tomorrow. We'll see if she has any suggestions for dealing with this ocular challenge.
Turbo is improving. The street-fighting man got into two skirmishes yesterday, with a small dog and a very large one. Luckily, Marty was walking him and no one was injured.
Monday, January 3, 2011
Tomorrow, I'm supposed to go on a 5.5 hour interview for a NYC Teaching Fellows position. I have to take a math test, teach a lesson, join in group activities and have a one-on-one interview. Frankly, I don't know how I'll handle this, but will give it the old college try.
Some of you may remember that I was accepted into the Rhode Island Fellows program and that I went to the interview with extreme laryngitis. If you want to be heard, whisper. Worked for me. How can I turn this latest problem into a plus? I'll think of something.