Sunday, December 18, 2011
The procedure went off without a hitch, my blood work was normal, and my transplant doctor was happy to send me on my way. As a special treat, I was able to meet with 2 of my twitter friends for lunch. Jody and Jennifer deserve a commendation for infinite patience. My clinic was running 2 hours behind and they had to wait on me for lunch. After a comedy of errors in which I kept pushing the schedule back via text messages, and poor Jody lost her keys, and sweet Jennifer was stuck at the restaurant holding the table during lunch time rush hour all by herself.
I'm afraid I'll have to recap the adventure in another post since my brain is shutting down and this seems to be as good as it's going to get. Before I completely forget, I managed a 3.0 for the semester. I don't know how it happened, but I'm happy to have it.
Here are the numbers for my blood work:
RBC: 4.01 M/UL (4.0-5.50)
WBC: 7.5 K/UL (4.0-11.0)
Hemoglobin: 12.3 G/DL (12.0-16.0)
Platelets: 387 K/UL (140-440)
Absolute neutrophil count: 4.94 K/UL (1.70-7.30)
My liver enzymes are absolutely middle of the road normal
Sunday, December 11, 2011
Aside from continued pain from the car accident, my health is good. I have a checkup in Houston on Wednesday which will include another bone marrow biopsy. It's routine, so no worries. Monday, I'm going to see my internist about the issues that I continue to have as a result of the car accident.
After a week of radio silence from the claims adjustor, I started leaving messages for him. After 2 weeks of staring at my smashed SUV taking up space in the driveway, I vented about the insurance company in question on twitter. Their twitter representative responded with a phone number and a request that I call. I'm glad I did. She worked some magic and my claims adjustor called me the next day. My car went in for repairs 24 hours later. I'm still waiting for reimbursement from them for the cost of having my car towed from the site of the accident back to my house. It's been almost a month and still nothing.
I'll post the results of the MDA visit Thursday or Friday.
Tuesday, November 22, 2011
Sunday, November 20, 2011
My car is inoperable. I am in near constant pain. I've seen a doctor who prescribed muscle relaxers. I prefer to avoid painkillers since they're either toxic to my liver or cause me to vomit, which makes everything worse. I can't get into more detail since the case is far from being resolved.
I'll write more about the accident when I'm free to do so.
In the meantime, I hope you all have a very wonderful Thanksgiving. May there be too much of everything that is pleasurable.
Thursday, November 3, 2011
The real reason for brining this up is related to another drug that I still take. Tacrolimus is an immunosuppressant drug that keeps my transplanted immune system in line. The anti-fungal I was taking also helped boost my ability to metabolize the tacrolimus, which meant that 1mg was enough to keep my immune system under control, and thus GvHD was a very minor nuisance. I still only take 1mg of tacrolimus and my immune system has started acting like a petulant baby left with a sitter.
The GvHD affecting my skin, mouth, scalp, and eyes has flared up ever so slightly. My skin feels like sandpaper and no amount of moisturizer really helps. I get small rashes, mostly on the lower part of my face. They're easily controlled with cortisone cream and are more annoying than threatening. I've had one mouth sore to date and that went away after a few applications of a steroid mouth rinse. My eyes are a little drier than usual, but honestly, they've been dry since transplant number one. I continue to use restasis drops and that keeps the problem under control.
As for my scalp, well, it's just gross. I constantly look like I'm smuggling artificial snow in my dark locks. My scalp itches sporadically and ferociously. I use a dandruff shampoo that smells like burning tar as well as a prescription topical steroid solution that I'm only supposed to apply every two to three days. I think the new normal for me includes an abundance of flakes of dead skin peppering my dark hair. It definitely beats having cancer, but really?
I've also been taking the new hormone replacement therapy for five and a half weeks. I do not love it. I was taking Prempro, which left me feeling even keeled and emotionally stable, before the whole fertility mystery. Now I'm taking Seasonale and I constantly feel like I have PMS. Poor Chris has been a trooper while I've subjected him to hormonal whiplash. I'm starting to get a handle on it, so I'll stick it out for another month or two in the hope that the compulsive bitchiness disappears. If it doesn't resolve, I'll ask to be put on something else.
There's a month left to my current semester of school and to put things bluntly, my scholastic performance to date has not been stellar. I'm stumbling badly in an estimating class and the very best I can hope for is a C. Truth be told, I will probably repeat the class next semester. As for the other two classes I'm taking, I have Bs in both. I'm a bit of a freak about my grades, so you'll have to excuse my neurosis if a C sounds like a good deal to you. I spend more time than most working on the material and trying to understand the subjects. Chemo brain makes life difficult and so I have to work ten times as hard to do half as well as most people. I no longer do tests well and time constraints only make things worse. In real world applications, I can bore you to tears with what I've learned. Give me a list of questions and an hour to answer them all and I am suddenly struck dumb.
I'll get through it. My professors are great and have been very understanding. One professor who knew me from classes taken before the transplant has been especially fantastic about everything. He makes an extra effort to be sure that I understand how to work things out during class. I've spent quite a few mornings in this professor's office getting extra help on the subject. Chris has been helping me nearly every day with the subject outside of class. You'd think I'd have an A given the amount of effort I've been putting in on top of the extra help I've been getting. It's the class in which I am doing the worst.
Thursday, October 27, 2011
I'm also learning that the middle-aged body is a mercilessly unforgiving thing. I gave myself a free pass from the diet yesterday and ate those things that I normally eschew. I managed to get as far as a lunch of nothing but those tiny powdered donuts that come in the glossy white bag. I had 6 of them and started to feel sick like I'd had too much of a good thing. After dinner, I had a piece of cake purchased from my local super market. You know the variety, the sheet cake covered in the kind of icing that never seems to go bad because it's made of entirely synthetic food-stuffs. Truth be known, it's one of my most favorite things. I rarely have it because I have no self control. After finishing a single slice, I asked Chris if he wouldn't mind bringing the rest of the cake to work just to get it out of the house.
Today, I just want to eat oatmeal and salad.
Tuesday, October 11, 2011
I am swamped with midterms, so things will be quiet on the blog until after 10/20.
Sunday, October 2, 2011
Dr. K. took me off of the anti-fungal, anti-viral, and the antibiotic I took 3 times a week to help guard me against possibly developing pneumonia. These 3 medications were a sort of insurance policy while I took an immunosuppressant. I still take tacrolimus (immunosuppressant). Dr. K. wants to wean me off of everything.
The anti-viral medication that I was on magnified my body's ability to absorb tacrolimus. This means that now that I'm off of it, the same 1 mg dose of tacrolimus that I still take isn't as effective. After a week of lower levels, I'm starting to feel the effects of an immune system coming off the leash. My skin constantly feels like ants are trying to escape from the inside. There's a constant stinging itch that moves around. Patches of skin have become extremely dry and flaky. My face looks as though I've allowed a thin layer of white glue to dry upon it. My cheeks and forehead are crinkly and puckered. The skin just under my eyes is peeling. Nothing helps. It itches and burns.
My latest pulmonary function test showed that I've had an improvement of 1% over the results from 6 months ago. GvHD of the lungs is very slow to heal. It's likely that I will be recovering from it for years to come. I'm at a little over 70% of lung capacity. Heat and high humidity make breathing difficult. Smoke and air pollutants leave me a little breathless. To give you a better reference point, I occasionally pass within a hundred yards of a small food service outpost on my way to class. On the days that they serve barbecue and smoked sausage I start to wheeze. That small bit of smoke in the air gives me hell. Try to imagine walking behind a smoker.
I saw my dermatologist while I was at MDA because I was worried about a small plaque of skin that had popped up on my left forearm. It wasn't like any GvHD that I'd ever experienced. It was a small, flat raised dot of skin. Extended use of immunosuppressants increases the incidence of skin cancer. It's one of the things my team constantly checks me for. I was concerned. As it happens, I was worried for no good reason.
It was a wart. I haven't had a wart since I was a child. Dr. H. froze it off and that was the end of it. She also took a skin punch biopsy from my right buttock. I've been walking around with a stitch on my ass. I don't expect the results to amount to much of anything. Dr. H. didn't think I had anything to worry about. I should get the results in another week.
And now I'll talk about the thing that's made me loathe to do much of anything for the last week. I don't know if many of you will remember the great mystery diagnosis I was l being so secretive about earlier in the year.
I've been seeing a reproductive endocrinologist as MDA for the last 2 years. He put me on hormone replacement therapy because my natural hormone levels indicated that I was fully menopausal. It was expected. Only 1-3% of transplant patients are genuinely able to retain fertility. After the first transplant, it looked like I would be one of the lucky few. I was able to menstruate, etc.
I wasn't so lucky after the second transplant. If I'm going to be absolutely honest about it, the fact broke my heart. I mourned the fact quietly and came to terms with it. Chris and I started investigating options. They all cost more than most entry-level luxury cars.
I went on with my life. I went back to school. I set the thought of kids aside.
In February of this year a funny thing happened. I started menstruating again after 2 years of nothing. I talked to my local oncologist who told me that it happens. I talked to my transplant doctor and she put in orders for me to see a specialist at MDA. A month passed, and then another. The periods got longer each time. In May, the bleeding became continuous. I became alarmed and pushed my transplant team on it. They got me in to see the gynecologist that works with transplant patients.
She wondered why I was on hormone replacement therapy. She told me what was happening wasn't unusual. She'd seen it happen before. She suspected that my reproductive organs had been quietly repairing themselves after so much chemotherapy. She suspected that I was still fertile.
I didn't want to say anything. I didn't want to hope. I didn't want other people to get excited about the possibility, because I didn't want to believe it. To believe that this could be possible opened me up to the possibility of having to grieve all over again. I'd done that and I refused to go through it again. And so I refused to believe it.
That didn't stop some small part of me from hoping.
Dr. R. ran tests. I had a vaginal ultrasound to check out the equipment so to speak. My blood work came back as inconclusive. Dr. R. told me to stop taking hormones. She scheduled me to return to MDA 2 weeks later for more tests. They were also inconclusive. Dr. R. scheduled more tests to take place a few months later.
I started to hope a little harder. It became harder to keep myself from believing that maybe she was right.
I saw Dr. R. last week for those tests. They were conclusive. I am not fertile. Technically, you have to go 1 year without menstruating before you can officially be declared menopausal. Dr. R. put me on a different regimen of hormone replacement therapy. It's a lower dose and different combination than the one I was previously on.
It was the original HRT that had caused the menstruation.
Now I'm working on accepting infertility all over again. It's harder this time. I don't want to talk about it. I want to hide under the covers and cry my eyes out. I didn't want to do much of anything last week. I'll get over it. I know I will. Thankfully, I have sweet friends like Diana who understands the heartache. She's held my hand through emails and Twitter. I have very dear old friends like Heather who makes a point of calling me multiple times during the week. She talks to me about the little things that happen on any given day and she listens to me complaining about school. They don't push, they don't bring it up, and they don't tell me what I need to do to get over it. They let me bring it up when I need to and they listen without pushing advice or opinions on me unless I ask for it. I am grateful.
I don't think that I'll write about this topic again. I won't close the door on the possibility, but right now I don't believe that I have any new insight to offer. If you're a transplant patient or survivor in a similar predicament and have questions, feel free to email me. I'll try to answer them as best I can.
Saturday, September 10, 2011
Wednesday, September 7, 2011
Thursday, August 25, 2011
Saturday, August 13, 2011
Monday, August 8, 2011
Sunday, July 31, 2011
Friday, July 15, 2011
Saturday, July 9, 2011
Monday, June 27, 2011
Tuesday, June 21, 2011
Saturday, June 11, 2011
Saturday, June 4, 2011
Friday, June 3, 2011
Thanks for your help.
Saturday, May 21, 2011
Wednesday, May 4, 2011
Tuesday, April 19, 2011
Friday, April 1, 2011
Saturday, March 19, 2011
RBC: 3.65 M/UL (4.0-5.50)
HEMOGLOBIN: 13.0 G/DL (12.0-16.0)
PLATELETS: 333 K/UL (140-440)
ANC: 9.52 K/UL (1.70-7.30)
LDH: 547 IU/L (313-618)
ALKALINE PHOSPHATASE: 59 IU/L (38-126)
ALANINE AMINOTRANSFERASE: 12 I/UL (7-56)
Chris and I celebrated this weekend by putting in a vegetable garden. This is our first attempt at growing anything edible and we're hopeful. We planted bibb lettuce, mesclun mix, carrots, 2 types of bell peppers, and 3 types of tomatoes. Since my friend, Lisa, asked for pictures, here they are:
Very few people know that I have an obsession with products flogged through infomercials. I am fascinated by them. Lest you think my house is filled with these same items, rest assured, my curiosity remains mostly unfulfilled. When I saw the Topsy Turvy in all of its as-seen-on-TV cheesy glory at the big box DIY store, I had to give it a shot. There are 2 varieties of tomatoes planted in the traditional garden, and a Creole tomato specimen in the upside-down planter. I'll pretend it's a science experiment.
We started 2 trays of herbs from seeds a few weeks ago. They seem to be doing well and may be ready to transplant into bigger pots in about 2 weeks. In case you're curious, we planted: chives, cilantro, marjoram, thyme, rosemary, oregano, sweet basil, parsley, and Thai basil. There's also a tray of snapdragons that we started last week. The sprouts are so tiny, I didn't want to torture you with them.
Saturday, March 12, 2011
I can't say anything about the situation in Japan that hasn't already been said. Our burdens are small in comparison to the depths of agony and magnitude of suffering taking place.
We have a chance to ease the grief of the Japanese people and help them rebuild from this unprecedented disaster.
Please consider making a donation to the Red Cross at the following link.
Monday, March 7, 2011
Very little has changed since I last updated. My weight is still up. I've now gained 24 pounds. When I was on steroids in 2008-2009, I gained 24 pounds. I was only on the blasted pills for 4 months then, so I should be grateful that I haven't gained more this time around. I'm exercising and have modified my diet once again. Last week, I was down 2 pounds. I'm almost convinced that it's time to join a program.
I do have one happy event to report. Last Thursday, I was able to climb 2 flights of stairs without passing out at the top. I've been gearing myself up for this little adventure for weeks. The only thing holding me back was that I knew that I couldn't use the handrail to help me along. There's a valid reason. The stairs in question lead to my 2 classes in PFT Hall. The handrails are regularly cleaned throughout the day by the janitorial staff using the same mop and water that was just used to mop the floor. We've all seen the murky water and gray mop heads go straight from the one task to the next. There's not enough hand sanitizer in the world to tempt me to touch those things on purpose.
I was early for class and there weren't a lot of people around, so I took the chance. Half way up the stairs, I remembered the backpack full of binders and books strapped to me. I managed the extra weight just fine. It's funny for me to think that I can spend 100 minutes on the treadmill without a problem, but actually bearing my own weight 6 inches at a time gives me pause. I'll keep trying. It's the only way to succeed.
Friday, February 25, 2011
Dr. B. said all of my numbers are normal and joked about my medication list looking like it belonged to a little old lady. It really does. I'm still on quite a few drugs.
My hair continues to fall out. It's gotten to the point that I can't cover the thinness with a well placed comb-over. I saw my stylist, Lydia yesterday and artist that she is, she cut it in such a way that there is the illusion of volume. I adore her.
Dr. B. thinks the thinning hair may be due to GvHD. My transplant doctor speculated that it was GvHD as well. I've been using a steroid topical solution on my scalp and have noticed that I'm not losing as much hair. I won't be able to see any new growth for 23 days. Until then, I'll continue in my quest for a certain real estate tycoon's comb-over secrets.
Chris's broken arm continues to heal. He has another appointment with the orthopedic surgeon in 2 weeks. He's getting more range of motion back, and able to do more for himself. Next week, he wants to try driving. I'm not so sure.
My friend, Lisa, recently posted a piece about the crazy things people say to you when you have cancer. It made me start to think of many of the cliches we've all been subjected to when friends and strangers are trying to offer comfort. I don't fault most people. It's hard to know what to say and they often feel compelled to say something. Unfortunately, a multitude of people lack filters and so they say the first thing that comes to mind. I've heard some fairly shocking things and I've gotten some truly hysterical questions. One friend thought a bone marrow transplant involved having all of your blood removed and replaced with healthy blood. I did not laugh as I explained the procedure, but I howled when I was out of earshot.
The one cliche that bothers me most is, "Cancer can be a gift."
Really? If so, I'd like the receipt so that I may return it for something a little more me.
Cancer is a thief.
It siphons away your life and dominates your thoughts and time. Cancer steals your joy and robs your loved ones of their peace of mind. It may slowly creep into your life, or explode in your lap when you're having the best week of your life.
Friends who can't cope with your diagnosis slip and slink away, glad that it's you and not them.
Cancer separates you from your orderly little existence and forces you to fight for what matters. It is a constant companion, even when your body is free of the dirty little mutant cells. The word always finds a way to slither into your thoughts so that you waste precious time and energy on the "what ifs?"
Cancer robs your body. Treatments are toxic and leave a lasting impression on your organs, joints and muscles. You may have scars from surgeries or procedures.
Cancer is not a gift.
Thursday, February 10, 2011
X-rays revealed a longitudinal fracture of the right radius. The clinic nurse wrapped his arm in a splint and gave Chris orders to follow up with an orthopedic surgeon today.
His mom was a total all-star and took time off from work to bring him to his appointment while I was in class.
The doctor informed Chris that the bone in his right forearm had been crushed, but probably wouldn't require surgery. He has to wear a hard splint for several weeks and follow up with physical therapy.
Right now, he's miserable and in pain and unable to work since any rotating motion in his wrist causes the bone fragments to pull apart.
I'll keep every one posted on any new developments.
Wednesday, February 9, 2011
RBC: 3.57 M/UL (4.00-5.50)
Hemoglobin: 12.5 G/DL (12.0-16.0)
Platelets: 368 K/UL (140-440)
ANC: 13.78 K/UL (1.70-7.30)
ALC: 0.68 K/UL (1.00-4.80)
Alkaline Phosphatase: 55 IU/L (38-126)
Alanine Aminotransferase: 18 IU/L (7-56)
LDH: 671 IU/L (331-618)
Where do I begin? For the most part, my blood work is normal. My liver is behaving. My white blood cell and neutrophil counts are still a bit elevated thanks to steroids, but not alarmingly so.
My weight is still up. Dr. K. is unhappy about it. Since I last saw her a month ago, I took it upon myself to modify my diet. I cut back on my daily calorie intake. I increased my water consumption from 2 liters a day to close to 3. I continued to exercise. Monday, I weighed in at 158 pounds. The exact same weight I was a month earlier. My waist is even a bit thicker than it was. Dr. K. asked me to cut fat consumption back even further, then she apologized for having to ask it. I do love my doctor.
It's the steroids. I know that. They cause fat to be deposited differently in the body. In my case, the fat settles around my middle. I have the kind of pot-belly that can regularly be seen during summers in the south when guys let it all hang out at their camps on Lake Maurepas.
Dr. K. cut my steroid dose in half to 4 mg every other day. She also warned me that I could expect to be on this dose for 3-6 months. There are 2 reasons. First: If the steroids are stopped too soon, my immune system could stage another attack on my organs and I'd have to start the high-dose steroid train all over again. I've managed to evade AVN twice, I don't know if I could do it a third time. The second reason for continuing on a low dose for such a long period is thanks in large part to my lazy glands. Your body doesn't start making its own steroids naturally until 1 month after you've stopped taking them. This applies to individuals who've been taking high-dose steroids over a long period. You shouldn't worry about it if you get a dex pack for mono. The course I've been moved on to is like a primer for my adrenal glands. They need to start getting ready to take over. From past experience, I know that I will be lethargic and unmotivated over the next few weeks as my body becomes accustomed to the lower steroid dose. I've already reminded Chris.
I'm still retaining fluid to the point that I can't wear my wedding ring. Dr. K. advised me to move from taking Lasix as needed to taking it every day.
As for the ongoing problem I alluded to in the last blog post, my hair has been falling out for the last 2 months. It's gotten to the point that I have to very strategically style it in order to cover my scalp. Dr. K. wasn't sure if it was due to GvHD or steroids. At the moment, there's nothing I can do about it. The dermatologist who specializes in GvHD wasn't available to see me on Monday. Dr. K.'s team is going to try to get me in next month to see Dr. H.
Overall, I'm well. Classes have kept me really busy, but I'm enjoying the challenge. Chris is busy with work. The cats are occupied with the business of being cats, which I'm sure involves schemes to get more treats and plots to oust the stinky humans from the bed.
Sunday, February 6, 2011
Saturday, January 29, 2011
The chimney is now fixed and they did a fantastic job. Then the over-the-range microwave had a complete meltdown while I was reheating something. It made the kind of noise you'd expect to hear while watching a really bad 1950's sci-fi movie about a crazy scientist. Think exploding vacuum tubes. Then there was the smell of ozone.
I lived in the time before microwaves were in every household. I spent the first 10 years of my life blissfully unaware of the supreme convenience of such devices. 7 days without this luxury nearly drove me crazy. I would be doomed if you dropped me in the wilderness.
The new OTR microwave was installed last week. The day it went in, I went out and bought microwave popcorn. Just because I could. Now the range is making a strange clicking noise intermittently. Until the range completely dies, I will deal with it.
Seemingly, all that remains is to paint the ceilings to hide the water stains from this month's adventure. It can wait until spring break.
As for me, the weight is still with me, as is the fluid retention. The 3 days of doubled lasix helped to reduce the swelling in my hands. Since I'm supposed to take it as needed, I decided to skip a day to see what would happen. Misery. The fluid came back with a vengeance. Exercise isn't making a difference and so I've made more adjustments to my diet. They haven't been helping, either. I'm resolved to being patient. I know the weight will come off and things will return to normal in a few months.
On a really bright note, the steroid yuckies seem to be resolving and I feel like a normal human being again. I'm sleeping more soundly and feeling less blah, for lack of a better description. The swelling in my face and neck is slowly resolving and most days it doesn't look like my cheeks are trying to swallow my eyes.
Classes are going well. Because of the materials being studied and the way the professors have structured the classes, I'm guaranteed homework and a quiz in each class every day. I can also count on being called on to answer questions about construction law in Louisiana. It is convoluted and a little crazy. After having taking a construction business administration class, I wondered what compelled people to start their own construction outfits. Now that I'm learning a little something about the laws that govern construction, I'm really curious. The odds seem to be stacked against you from the beginning.
I'll try to get something up on the blog once a week. Because of my schedule, I can't guarantee a certain day. Just know that I am well. Chris is well and the cats still rule the roost.
Sunday, January 23, 2011
Friday, January 21, 2011
Earlier this week, I noticed that my fingers were swollen to the point that I couldn't get my rings off. I've been taking lasix, so this shouldn't have been the case. I contacted my transplant team and was advised that I could double the lasix dose for three days, but I'd need to have blood work done locally.
I finished the new course of lasix yesterday and saw my local oncologist this morning. My weight is still up and I'm still retaining some fluid. My transplant doctor wanted to be sure that my electrolyte levels weren't low due to all of the excess flushing. Much to my surprise, they were absolutely normal. My local doctor pronounced me to be perfect. The man has a medical degree, so he must know what he's talking about.
For those that are interested, here are the numbers:
WBC: 13.1 k/ul (4.5-10.8) Dr. B. assured me that it's mostly neutrophils thanks to the steroids.
RBC: 3.67 M/ul (4.2-5.4) They've been a little low for months now. Nothing to be worried about.
Hemoglobin: 12.9 g/dl (12.0-16.0)
Platelets: 397 k/ul (150-350)
ALC: 2.3 k/ul (1.3-2.9)
ANC: 9.5 k/ul (1.5-10.0)
ALK PHOS: 37 IU/L (32-92)
AST/SGOT: 14 IU/L (10-42)
ALT/SGPT: 19 IU/L (10-40)
It would appear that my liver is behaving. My liver enzymes are blissfully normal. You have no idea how happy this makes me.
I'll see my transplant doctor in February, and until then, my medical dance card should be empty.
Monday, January 10, 2011
My disappointment at the poor fit coupled with my extreme discomfort doing most things compelled me to email my transplant team. I stopped being stubborn and gave in to lasix.
Lasix is a diuretic that can be administered via IV infusion or in pill form. I've only had it as an IV while in the hospital. My experience with it then was that it worked within 15 minutes and that I'd need to urinate every 10 minutes until the drug wore off.
I started taking the lasix pills Friday. They don't work as quickly and the urge to run to the water closet doesn't approach the scale of an all out emergency. However, I was feeling more comfortable in my own skin by the end of the night.
I haven't really discussed it before, but the excessive pressure around my torso made digestion a nightmare. Anything I ate would sit like a stone in my stomach for most of the day. My abdomen would become distended with each subsequent meal. Extreme constipation was my co-pilot.
Saturday, I could eat a meal and feel normal. I didn't have to work as hard to draw breath. Lest anyone become alarmed, I did not have trouble breathing because my lungs were inflamed. The pressure from the extra fluid meant that I had to exert a little more to draw breath. Once the lasix started to work, my breathing became normal.
Sunday morning, I took my pill and noticed that it didn't seem to be working by mid-day. I soon learned why. The pill is about 1/3 the size of a tic-tac and I have diminished feeling in my fingertips. The pill slipped out of my grasp before it made it to my mouth. I found the pill in its pristine whiteness lying on my bed. I'm thankful one of the cats hadn't eaten it. I took a dose a little before 2pm and it didn't begin working until after dinner. Back to feeling bloated.
I also gave in and bought bigger pants. They'll hang in my closet next to the bigger tops after this is all over. This time, I'll keep them around, just in case.
Wednesday, January 5, 2011
She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.
Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.
As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:
WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.
RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.
Hemoglobin: 12.0 (12.0-16.0)
Platelets: 259 K/UL (140-440)
ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.
ALC: 1.83 K/UL (1.00-4.80)
AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.
I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.
My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.
The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.
In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.
I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.
Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.
Saturday, January 1, 2011
My steroid weight gain has topped out at 10 pounds over the last two weeks. It's mostly around my midsection and it's making me miserable. I know it's mostly fluid. I know it will resolve once the steroids stop. I know that I am still me.
I'm still bothered. Nothing fits. Nothing. I had to buy new tops about a month after the steroids started for the same reason. I just ordered a slew of tops in the next bigger size. I am uncomfortable in my own skin and it has brought me perilously close to a pity party.
I'm not complaining about feeling fat. Steroid weight isn't like that for me. If you could see me in real life, you'd know what I was talking about. My legs are still the same size as they were in the beginning, if not smaller from deteriorating muscle tone. I look a bit like a scaled down version of Violet Beauregard from the original Charlie and the Chocolate Factory movie starring Gene Wilder, post gum debacle.
It's a matter of looking like the odd man out. I tend to like to blend in with the herd. Especially post cancer. I've managed to distinguish myself enough in the world of weird disorders and treatment. Time for someone else to shine.
The frustration of this all has fed into a general feeling of what's next?
That's not like me and I've worked on snapping out of it. I'm not feeling sorry for myself, and I don't want any one else to. I am putting one foot in front of the other and I am determined to plow through this just like I've done each time before.
I just had to remind myself of why I keep doing this. I get up every day because I want to stick my thumb in the eye of cancer. I write this blog so that others who have been diagnosed know that they aren't alone. Every day that I push forward toward my goals is a win and we all like to win.
Eight days from today, four years ago, I was told that I had leukemia. Two days later, I started treatment in Houston. I think I'll let these two dates pass with no celebration. I'll have made four years and as far as I'm concerned, that's a major win.