Wednesday, August 26, 2009

Still here

Our house guest to be became ill, so he couldn't make it down for a visit. Chris and I are hoping he feels better soon.

The only drama this week is cat related, so I'll spare you the gory details. Akiko has proven to be an interesting addition to the family and has managed to spend more time at the vet's office than she has here in the two short months since we adopted her. For the curious, it had nothing to do with her previous infections and surprised the vet during a routine operation. That's my girl, always keep them guessing. After two early morning visits to the vet in the last two days, she's home and acting like nothing happened.

I'm plodding along taking it easy and trying to avoid catching the flu that seems to be laying everyone low. My next doctor's appointment is with my dentist and then I'm off to Houston the day after that to have my one year post transplant check-up. No worries here.

Thursday, August 20, 2009

Nothing new

I don't really have anything new to report, but I didn't want to let a week go by on the blog without a post. I get anxious when my friends in the blogosphere are quiet for too long and didn't want anyone to worry because I did the same.

The skin GvHD persists and I have to take benadryl at least three days a week as a result of flares. I still have it much better than others who suffer from the same thing, so no whining here. The stinging sensation has been a little worse lately and comes on without warning now. If it's hot or really sunny and I'm outside for more than five seconds, I can anticipate something happening, but it's starting to happen more and more when I'm in the house being active. Last week I had an attack while vacuuming and ended up dropping the thermostat to 70 in an attempt to cool off quickly. Sometimes it happens in the shower if the water is too hot, which is not very hot at all. It's evidence that the new immune system is on patrol and doing what it's programmed to do and I'm hopeful that if there are any hidden pockets of leukemia or clone cells waiting for an opening to mutate, my donor's system knows what to do.

I'll confess to being a non-compliant patient last week and since it's the first time I've done something that I shouldn't have, I'm feeling very sheepish. You transplant veterans can probably relate to what I'm about to confess and everyone else is probably going to think it's just funny. I colored my hair.

Because of the conditioning regimen I had with this last transplant, my hair still hasn't fully grown in. My doctor swears that it will and that I need to be patient. People, it's been eleven months. With the first transplant, I had a full head of hair by the six month mark. What did manage to grow back this time around was a 60/40 mix of gray and brown. Every time I looked in the mirror, I could see my dad's hair, curls and all. I felt like this one act of rebellion would make me feel more normal even though I could hear my transplant doctor asking me why I would do it.

After transplant, the doctors like for you to wait at least a year before you do something so vain as adding color. Your skin tends to be very sensitive to chemicals and if you have GvHD, the dye tends to cause flares. So, I did it and I do feel more normal because of it. Of course, if you saw me in public, you wouldn't know since I still have to wear a baseball cap. I don't mind being marginally bald and would rather go out in public without a hat or scarf, but people tend to stare and it gets tiresome after a while.

Chris and I are really looking forward to having our first house guest next week and I'm doing my best to stay out of trouble. Things will probably be quiet on the blog front, so please don't worry if I don't post for the next few days.

Wednesday, August 12, 2009

For Tina...Groverfield

Doctor's follow-up

WBC: 6.3 k/ul
RBC: 3.77 M/UL
HGB: 12.5 g/dl
PLT: 348 k/ul
ANC: 4.4 k/ul

I had a follow-up appointment with my local hematologist/oncologist today and all is well. As you can see, my numbers have stabilized from last week. My LFT's have come down slightly. One is within normal ranges and one is very close. Unfortunately, the third measured component is still three times the high end of normal. I joked with Dr. B. that they'd go through the roof the day before my next MDA check-up just to spite me, since this always seems to be the case.

Dr. B. compared today's chest x-rays to last week's and said that they were clear. After he listened to my lungs, he pronounced them as clear as they always are. It no longer hurts to take a full breath which is a complete relief. Imagine going a week without being able to really yawn. It doesn't sound that horrible, but it actually is pretty inconvenient.

I'm relieved to be able to have a conversation without having to pant for breath. There's a dentist appointment on the books for tomorrow and I've been warned that it's going to be a long one. I'll have a crown put in and a cavity filled. I'll also have my teeth cleaned which I'm really looking forward to, since it's been three years. Sick, I know, but I really do love my dentists and I think this makes all the difference in the world.

The week is half over and I've managed to stay out of the hospital. My next doctor's appointment is in Houston, September 16. My one year transplant anniversary is September 6. I'll be having a day of internal beauty with the works: bone marrow aspiration and biopsy, bone density scan, overall wellness check-up and some liver tests. At least I don't have to have a lumbar puncture this time.

I think I'll be holding my breath until October on this one, since I relapsed at 13 months with the last transplant. There's still a small kernel of superstition buried in my intellectual garden and it's starting to sprout with this anniversary looming. I'll do my best not to nurture it along, but you know how certain thoughts and rituals can take your life over after a cancer diagnosis. It's the darkness and the what if's that prove such fertile soil. I've managed to keep the darkness at bay and the what if's on the periphery. I hope they stay that way permanently, but we all have our bad days and I'm no exception.

Friday, August 7, 2009

In the middle of the night

It all started sometime after midnight Friday morning. I was wide awake for no apparent reason. The house was quiet and Chris was sleeping soundly next to me. Rather than disturb Chris by turning on the TV, or booting up my computer, I played a few games of Scrabble on my phone, hoping that I'd be able to fall asleep soon. After an hour, I gave up and got myself a glass of water.

Five minutes after returning to bed I found myself being propelled across the room, madly trying to make it to the bathroom before I started vomiting. Aside from being thirsty, I couldn't say that I was feeling unwell. I was sick six times before 5am.

Earlier in the day, I'd had lunch with a friend that I hadn't seen since the first transplant. I could only assume that I had food poisoning since I hadn't run a fever or felt badly all day. Since he had the same meal as I did, I could only hope he was fine.

I threw up once more around 8am and was miserable. Life after transplant is sometimes a vicious cycle where you're constantly trying to stay hydrated because you know you'll feel horrible if you don't. For me, dehydration leads to nausea. Each time I took a sip of water, I'd throw up within minutes. I spoke with my transplant nurse and she advised that I try to get any liquid down. I managed two glasses of soda before my stomach started to heave. It stayed down, but just barely.

The rest of the day was spent under the covers drifting in and out of sleep. Occasionally, Sookie would come lay next to me, rubbing her face against my hand, hoping for a good scratch. Chris got home around 3pm and brought me a bowl of soup and some crackers. I managed to keep it down and felt much better for it.

I'm feeling a little closer to normal and hope to put this week behind me with no more incidents. My plate is full next week with doctor's appointments and business as usual.

Wednesday, August 5, 2009

Fun things to do in the ER

I am exhausted. So is Chris. I think Bob is, too. I'm really sorry about that.



Yesterday, at around 3pm, I started feeling pain on my right side, just under my ribcage. As I moved around making dinner, it became worse and I started having trouble breathing as a result. Each time I tried to take a full breath, the pain became acutely sharp and would stop me in my tracks.



I knew Chris would be driving home from work soon, so I determined to wait until he got here before I let him know that anything was going on. My rationale was that it didn't feel like an emergency and I didn't want him driving home during rush hour in a distracted frame of mind. When he called me from the road I told him about the pain and said that I'd like to get it checked out. Of course he got stuck in horrible traffic, but he handled the situation really well and I'm very proud of him.

We managed to get to the ER just shy of 5:30pm. Because I've had a bone marrow transplant, I was ushered right in and isolated from the sick people in the waiting room. The pain was getting worse each time I tried to take a full breath, so I resolved the problem by breathing in a shallow manner.

To spare you all of the gory details, the ER doctor suspected that I'd had a pulmonary embolism, or a blood clot in my lung. Not exactly what you want to hear as a recovering transplant patient, but a better diagnosis than most others that it could have been. I had a chest x-ray which showed no abnormalities. Once my bloodwork came back clean and the doctor could see that my kidneys were healthy, a CT scan with contrast was ordered.

Things were happening in a strung out fashion since the ER started hopping shortly after I arrived. I think there were 2 car accidents and a handful of other emergencies that were definitely more life threatening than mine. I think the CT scan happened sometime around 11pm. By then, the pain in my side had jumped to a 6 on a scale of 0-10 and was coming on more frequently.

As soon as the CT results were available, the doctor came in a little surprised. No clot could be found regardless of the fact that I was presenting with all of the classic symptoms. However, the pathologist could see that my lung wasn't inflating to its full capacity and that the exact spot that was causing me pain had collapsed. The ER doctor still felt that there was the chance of a blood clot and after consulting with my transplant doctor at MDA, ordered an ultrasound of my legs. The ultrasound happened sometime before midnight and I could see for myself that my veins and arteries were clear.

The official diagnosis became pulmonary pleurisy with no apparent cause. This just means that the tissue of my lung where it's collapsed is inflamed, so it hurts to draw a full breath. In order to get over it, I have to draw a full breath. It's a catch 22. In the meantime, the doctor that took over for the first ER doctor came in and offered me a painkiller. I thought that he was going to give me a Tylenol or something like that, so I accepted. A few minutes later, a nurse came in and injected morphine through my IV.

So I was stoned out of my mind and my side still hurt, but I was in such a stupor, I couldn't articulate it. That's why I hate opiates. They don't do a thing for me, except make me feel sick.

The same doctor came back and asked me if I'd like a prescription for a painkiller and if I'd like another shot of morphine or something. Yes to the first, but a definite no to the latter.

I was finally discharged sometime after 2am with a prescription for oxycodone and feeling awful from the morphine. Chris was starving and exhausted. We picked up the drug and some food on the way back to the house. As soon as we got home, I threw up. I knew it would happen since it happens every time I get opiates.

Sadly, I threw up again right after I had something to eat. By now, it's after 3am and I'm just tired and want to go to bed. My side still hurt and it had been a horribly long day. I got to sleep until 7am when the phone started ringing.

Coincidentally, I had an appointment with my local oncologist today. It worked out very well, since the ER doctor wanted me to see Dr. B. just to be safe. There was a mix-up with scheduling and although I'd made an appointment and had an appointment card, I wasn't showing up in the system. They were able to squeeze me in, but Dr. B. wasn't actually at the clinic when I arrived.

The hospital hadn't contacted the doctor's office, so he was surprised to hear about last nights adventure. He was great and suggested that I take an anti-inflammatory in order to reduce the swelling of the tissue around my lung. His sentiment about the painkiller echoed mine and he even went so far as to liken taking the opiate to masking a scent with perfume. You treat the symptom, but not the problem. I was in total agreement. I'd rather reduce the inflammation and actually start the healing process over taking a pill that will make me dysfunctional and mask the problem. The oxycodone remains untouched in favor of an over the counter pain killer.

The pain in my side is still present, but has lessened in its intensity. I promised Chris that I would take it easy and have been sitting up in bed doing absolutely nothing since I got home this afternoon. I have a follow-up with Dr. B. next week. He wants to check on me to be absolutely sure that things are headed in the right direction. Lucky me, it's the day before my big dentist's visit to have a cavity filled and a new crown placed. No big hardship, since I get to see some of my absolute favorite people, Drs. Toi and Cyndi Nguyen. Love them.

So there you have the very long and drawn out short version of what happened yesterday. I'll post if there are any changes.

Monday, August 3, 2009

sore throat brewing

Chris wasn't feeling very well last night and didn't get enough sleep because he was throwing up off and on. He decided that it was something he ate and elected to go to work today. Sometime around noon, he texted me to let me know that he thought he was definitely coming down with something. There's a little "tickle" in his throat and he complained of feeling run down and achy.

His primary concern is that I don't catch it. I warned him that I'd catch something sooner or later and that I may as well get it over with. Truth be known, I'd rather start showing symptoms sooner rather than later since I'll be seeing my local hematologist on Wednesday. I plan on asking for a throat culture and possibly a nasal wash just to be on the safe side. If something is brewing, then I want to be one step ahead.

I'm feeling a little tired, but that could be because I didn't get enough sleep last night and ended up awake and moving before 6. Akiko is back and she is in rare form. She's been zipping around the house, barking--yes, she barks, and squeaking at the top of her range. Etsuko is a nervous wreck and has been hiding under the bed since she gets pounced on everytime she comes out to explore. My fingers are crossed that Akiko starts to calm down as she gets older. I only hope that Sookie and I can survive with our nerves intact until then. If you haven't guessed, I'm her second favorite moving target behind Etsuko.

I have a dentist's appointment scheduled for tomorrow. While flossing Saturday, I partially pulled out an old filling. It didn't come completely out, so I gingerly pushed it back into place and figuratively held my breath all weekend. This will be the first time in 3 years that I've been in the dentist's chair. I still have that broken molar to be fixed which will probably mean 2 crowns. Woohoo!

Saturday, August 1, 2009

For Anonymous(Lea or Wendy?)

The double chocolate, chocolate chip cookies evolved from this recipe a few years ago.

Ingredients:

1 1/4 C all purpose flour
1 C coca powder
1 tsp kosher salt
1 tsp baking soda
1/4 C sugar
1 1/4 C dark brown sugar
2 sticks of butter, melted
1 1/2 tsp vanilla
2 eggs
1 bag semi-sweet chocolate chips


Mix the dry ingredients together and set aside.

In a separate bowl, cream together the sugars and melted butter until light and fluffy. About 3 minutes on medium speed. Add the eggs and vanilla and mix thoroughly.

Mix the dry ingredients with the wet, then stir in the chocolate chips.

Chill the dough for at least 15 minutes. While the dough is chilling, preheat the oven to 375 degrees. Portion the dough out onto a parchment lined baking sheet using a tablespoon or small ice-cream scoop. I can get 12 cookies to a pan. Bake for 14 minutes, then cool the cookies on a wire rack.

If you decide to use a "dark" cocoa (the label will denote it), then you must adjust a few measurements. Increase the flour to 1 1/2 cups and the cocoa to 3/4 cup.

These cookies are very rich, and I know that the temptation to make monster cookies exists. Try to resist. Trust me, I speak from experience.