Saturday, January 29, 2011

Catching up

The month of January has been populated by pseud-minor house related calamities. I haven't blogged about them because it's been such an effort to get the issues resolved. After a month of waiting for estimates from various contractors and then dealing with some of their crazy personalities after receiving said estimates, we settled on a larger local outfit. It was 2 weeks before there was an opening in their schedule in order to fix our chimney. It rained something like 10 of the 14 days while we waited.

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

Happy Birthday

My friend, Patricia, who is also a two time transplant club member is celebrating her birthday today. Happy birthday, PJ!

Friday, January 21, 2011

Holding an ocean

The new semester started Tuesday and thanks to the internet, one of my professors was able to post assignments ahead of class. I have been hiding under textbooks since Sunday. Last semester gave me a good sense of what I might be able to handle this time around. I'm only taking two classes: Construction Law and Statics/Mechanics/Dynamics. Both classes require a lot of outside reading and both professors have structured the coursework so that you will always have something due each class period, or a quiz at the very least.

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

Giving in

Last Thursday, I managed to find a pair of the jeans I last wore while at my heaviest on steroids. At that time I weighed in at 164 lbs. The weight was from a combination of steroid eating and fluid retention. I tried them on and could just barely button them. My current weight is 152 lbs. It's most definitely mostly fluid retention.

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

Another month, another trip to Houston

To keep things interesting, I had an appointment with my transplant doctor this past Monday. I'm still on steroids, so Dr. K. is keeping a close eye on me. She commented on how my face looked less full. I countered her observation in the negative. Ten minutes into the visit, she began to agree with me.

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.

We'll see.

Saturday, January 1, 2011

My first date with Kai

I think I've been taking steroids for 14 weeks now. You can see how the fluid is collecting in my face, neck, and torso. I also had the pleasure of meeting my nephew, Kai. I may be biased, but he's gorgeous and just a doll.

Sorting it all out

Over the last few weeks, I've been finding it more difficult than usual to update the blog. It's been a combination of things like the holidays and steroids colluding to keep me away. Mainly, I haven't liked any of the topics that have occurred to me.

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.