Transfusion Time

2/13/07 Day 34

We started off with an early day today at MDA, 7:00 am blood work followed by 8:00 am lab review of the results. For some reason MDA is unusually busy today. Really really busy. There were so many people a the clinic this morning that they failed to give Ann all the orders for all of her blood work. Although we didn't find that out until later.

When we did get into the lab review we found out some good news. Ann's last LP came back negative again for cancer in her central nervous system! That makes all the LPs negative for leukemia and we are both very encouraged by it.

Ann's WBC count was up to 2.6 K/uL today (good). While her platelets were down to 10 K/uL (very bad). RBC count was at a 2.76 K/uL (also bad) and her magnesium was down again. I had resolved to get Ann to snack on cashew nuts (thanks for the link Tina) but they have not kicked in yet. So back to the transfusion unit we went for 2 units of platelets, 2 units of irradiated red blood, magnesium, Benadryl, Lasik and vitamin D.

The up side is that Ann is feeling good enough to actually walk around on her own for the 1st time since we got here. She turned down the wheel chair when we got to MDA this morning and insisted on walking at a nice steady pace with me where ever we had to go. This extended to the transfusion clinic when she took a couple of small walks with her IV tree and pumps.

While Ann is int he infusion clinic the blood/chemo is injected into one of the main arteries going into her heart by way of her CVC. While it creeps me out to look at and I live in constant fear that it will get infected, the staff assures me that it is the simplest and easiest way to infuse liquids into her.

As you can see in the picture left it is made up of two tube or "lumens" with in-line clamps (the red things). Each lumen is capped off with a sort of one way valve that allows medicine it enter and prevents her blood coming out. Trust me it looks even creepier without the dressing on.

The only good things about spending the day in the transfusion clinic is that Ann gets lunch free, we get to watch some cable TV and the nurses all just love Ann to bits.

UPDATE 1

I have started talking to some marrow donor recruitment programs (see links on the side of the page) and asked them if they would like to use Ann in their drives. The answer has been an enthusiastic "yes". I hope that it will increase the number of potential matches Ann has to draw from when the time to select a donor comes. But even if it doesn't I hope that maybe someone else will benefit from a person reading about Ann's story and being moved enough to become a donor themselves.

UPDATE 2

The BMT clinic called today and let us know that the insurance company has denied Ann the use of a drug called Rutuxan after her future transplant because they consider its use with ALL to be "experimental". The Insurance company had told me as much yesterday when I spoke to them on the phone but now our BMT Doctor at MDA says differently.

So on one hand the insurance company has released the funds for high resolution matching but has denied a drug that our Doctor feels is necessary to treat the remaining cancer cells after the transplant takes place. For those of you who want to know Rutuxan is a genetically engineered human antibody that is tailored to boost the immune system. For more information go to http://www.rxlist.com/cgi/generic/ritux.htm.

MDA is doing an appeal and I need to claim down and remember that there is months between now and any future transplant. And I know who I need to talk to if MDA's appeal fails.

The good, the bad, and the ugly

2/12/07 Day 33

Ok, there's good news and there's not so good news.
My eyes popped open in the shower today. It was a very big surprise. Chris has just inserted a thermometer into my ear and the temperature is normal. He'll probably take my temperature again just to be sure. He did. He's doing it a third time. Now I have to do the oral thermometer because the second and third reading were a little above normal. Bare with me.

All done and the next three were normal.

Now, back to the eyes...I can't read yet, because it stresses my eyes to focus on small print. I apologize for the extra mistakes in advance. My vision is otherwise clear. I am still light sensitive and this probably has to do with a combination of the chemical damage and the fact that my eyes were closed for so long. Anyhow, I am grateful to be able to see again. Let's all hope that this lasts. I have an appointment with the opthamologist tomorrow. Small world, she's from Baton Rouge.

The not so good news is that as my counts crash, so does my energy level. I woke up feeling run down today. As the day progressed, it got worse. I have a small headache which could have something to do with my eyes and my appetite is gone again. If I push too hard to eat, I get nauseated. My hands have been continuously shaky today and I had to take a nap. I haven't had to do that in a while. I have blood work scheduled tomorrow morning. Chris thinks that I'll have to have a transfusion. I think he might be right.

My eyes are starting to really bother me, so I have to cut this short. I will let everyone know what the doctor says about my eyes.

Before I forget, the ugly part is actually quite funny. My eyebrows have started falling out. Actually, they were falling out the entire time I couldn't see, so I was very surprised to see that the left one has a bald patch and looks like a pencil thin mustache. The right eyebrow is actually falling out rather nicely. It just looks like I had it waxed. Go figure. I'll let them come out naturally, which probably means that I'll have on eyebrow for a while. :)

Still Can't See

2/11/07 Day 32

Reached summit of Kilimanjaro...had to eat the Sherpas and burned Dr. Hastlingford for warmth...

Just joking :)

Its day four and I still can't see. I did discover yesterday by accident that if someone surprises me my right eye pops open. This only lasts for about 10 seconds but, that seems promising. I'm still having problems opening my left eye. But when I get my steroid drops my vision is clear. That's good news I suppose.

The Doctor keeps telling me that I am magnesium deficient. I take two supplements a day and receive magnesium by IV every time I get a transfusion. I asked a nurse yesterday what foods I could incorporate that were magnesium rich, and she didn't have a clue. Chris looked it up and it turns out that one of the foods that I have been craving is a good source of magnesium. Take that Atkins potatoes are your friends.

I have been passing the time by listening to books on tape that Chris has downloaded onto my MP3 player. They make the day go by. You really take for granted the passing of the day when you can see. I have absolutely no idea what time it is until Chris tells me it's time to eat or take medicine. I'm really hoping that my eyes heal quickly so that I can go back to being normal.

Food is beginning to frustrate me. Because I can't see what I'm eating. I also have a hard time with the proximity of the food to my mouth. I usually end up hitting my face with it. It's hard to find foods that I can comfortably eat in public. I tried to eat waffle fries from Chik-Fil-A yesterday and almost couldn't manage it. The chicken sandwich was a disaster, since the chicken kept sliding out of the bun and I couldn't see it to fix it. At this point the only thing that I can comfortably manage is a slice of pizza or a peanut butter and jelly sandwich.

I would really like to be able to see.

On a positive note I feel like I did before I was diagnosed. Even though my counts are down I have more energy than I have since this has started.

I received a care package from Mrs. Gilbert's 8th Grade Class the other day. They all wrote letters that were very sweet and made me smile. It's nice to know that there are such great kids out there. I need to send them a thank you card unfortunately I can't see to write it. I hope that they don't mind it being a little late. It honestly was one of the best gifts and I am thankful.

Poor Chris is having to type all of this so I am going to give him a break. I'll keep you posted.

(Dictated by Ann to Chris)

"These aren't the droids we're looking for."

2/10/07 Day 31

Those of you who are not fans of Star Wars (the one that came out in 1977) will be confused by the title of today's post. Its a line of dialogue between Alec Guinness and a Stromtrooper looking for C-3PO and R2 D2. It's also an inside joke between me and Ann because of all the gear she has to wear to go out in public now. Dark UV shades for her eyes, a face mask to protect against infection, and hat to prevent sunburn while her skin is artificially sensitive to light. In short she looks like a Stormtrooper.

Ok on a more serious note, another day down. Nothing special about day 31 other than it's a prime number.

True to form what started out as a supposedly light day at MDA of a blood draw and review (about 2hrs in duration) turned in to a all day affair. The blood work showed that Ann's platelets were dangerously low (14 K/uL), which we knew was going to happen because of the last round of chemo. Her magnesium was also very low and her WBC count was down from 6.2 K/ul two days ago to 0.2 K/uL today!

As an aside I am glad I went and got checked out yesterday before I saw that number. Basically Ann could catch anything right now and would have zero immune response to it.

So she was whisked off to get a transfusion which ate up pretty much the rest of the day from lunch time to around 5pm. The transfusion doesn't take that long but getting platelets from the blood bank takes time. They need to be match carefully to avoid giving the recipient a bad reaction.

This time Ann had one, not bad, but she complained of itching and felt like she needed to scratch all over. Luckily this passed. I think of it as a preview of GvHD (Graft vs. Host Disease) which Ann is likely to develop in some form or another after a bone marrow transplant.

The worst part about this whole episode with Ann's eyes is that she has finally gotten the energy to walk around and wants to do some exercise. She wants to keep her leg muscles in tone. But now she can't see anything and again has to be pushed around in a wheelchair. It's remarkable that her attitude is still as up-beat as it is.

We have been here long enough to have met some people in the leukemia clinic who have just given up or are very close to it and it is very scary. I think it's all the love of the people who are wishing her well that keeps her focused, positive and motivated to beat this. Please let Ann know you are pulling for her.

Thank you all.

Cytarabine Toxicity

2/9/07 Day 30

Devotees of this blog will note that I promised more updates yesterday and then failed to post them. The reason is that Ann has officially run afoul of her first major complication to her chemo treatment. The culprit is Cytarabine and was one of the two drugs used in the last round of chemo.

The side affect Ann is going through is called Cytarabine Toxicity and as you can see from the picture it has done a number on her eyes. It started after I finished yesterday's blog post. Ann started complaining of red eyes and trouble with lots and lots of tears. It only got worse from there on.

Ann thought after consultation with her Nurse that the cause of the problem was the steroid drops that she was taking. Wrong! Lesson learned: Ask your Doctor before you stop taking any medications while undergoing chemo. As it turns out the steroids were to prevent the very situation that was now occurring.

When we got in to see her Doctor yesterday it took all of thirty seconds for her Doctor to notice the problem and send Ann directly to the Opthamologist. By the time we actually got in to see the Opthamologist, due to a long wait, Ann's eyes had completely swollen and tears where streaming out of them continuously.

Ann is particularly reactive to Cytarabine, more reactive than the staff at MDA has seen in years. So from yesterday at lunch time Ann has had her eyes swollen shut and is functionally blind. The Opthamologist says that this will last for days or maybe longer than a month.

Of course throughout all this Ann still had to meet her appointments yesterday. One of which included a lumbar puncture...again. She did he a hefty dose of Adavan which helped with the eye pain, but also knocked her out cold. The PAs doing the LP did tell me that the last LP she had in the hospital turned out negative! Hooray!

We did have Sloppy Joe night but the enjoyment of it was somewhat diminished as Sloppy Joes are not the selected food of choice for the blind. However Ann said she really enjoyed the food though and I was really happy to see her eat with something closer to her old appetite.

That wraps up the events of yesterday and brings us to today's events.

This morning Ann woke me up after having trapped herself in the corner. Not being able to see she had missed the door to the bathroom and got stuck in the corner of the bedroom. Her eyes had continued to swell overn night (even with a cold compress on them) and she was incapable of opening her eyes at all.

After seeing this we when back to MDA to have Ann's eyes evaluated again. The new Opthamologist discovered a scratch on Ann's cornea of her left eye(2mm x 1mm) and changed type of drops that we were putting in her eyes again. This time he added a antibacterial drop to the steroid and cream we were prescribed yesterday. I have to pry Ann's eyes apart with both hands to get enough room to put any of these in. To boot I have to do it in a lit room so I don't bump her eye with the applicator and I can't even begin to tell you how much pain this puts Ann in.

The final event of the day involves me and not Ann. Yesterday I noticed a sore spot inside of my neck, like a pulled muscle near my adams apple. In fact I took it for a muscle pain because of having to twist my head to put my back pack (holding Ann's supplies and records) throughout the day. Well today it got on my nerves so much that I decided to have it checked out on the off chance it was a infection.

We hear so many stories from the other leukemia patients here about their problems with small infections that quickly got out of hand that I am completely paranoid. I think I wash my hands 30 or 40 times a day. So I found a clinic near the apartment and after explaining I was taking sole care of a chemo patient, I got in to see a Doctor right away.

She felt my throat and said I have a enlarged lymph node with some post nasal drip in the back of my throat. Of course when she said "enlarged lymph node" I had to suppress a twinge of panic. Ann's first symptom of leukemia was after all enlarged lymph nodes (although hers were not painful and she had more of them and much much larger). Of course I blurted this out to the Doctor...

She told me not to worry and completely understood. It's hard not to walk around all day every day in a place like MDA and see some of the things I have seen here with out being just a little bit paranoid of any symptom of even a simple illness. She diagnosed me with Lymphadenitis , took a swab for strep and gave me some giant antibiotics to take twice a day. I gobbled the pills right out of the bottle as soon as I got them from Wallgreens.

I hope I don't get sick. If I get sick I will not be able to be around Ann or she will get very very sick. Plus she can't see right now and can't even get around the apartment on her own.

Jesus, please don't let me get sick right now.

Update 1

Ann says "Being blind sucks! One the up side I feel like my old self and I'm not tired. Expect for the blindness I'd feel normal."

Transplant News

2/8/07 Day 29

Let me start out with a bit of an update from yesterday. Ann was feeling pretty good and hungry for "real" food for a change. So with her suggestion I whipped up some very basic chicken soft tacos with avocado chunks in lime. I'm happy to say she ate two large tacos and then a tortilla by itself. That's the best she has done since the diagnosis.

Ann asked me to cook some red meat for dinner sometime and has been craving ketchup. Red meat is pretty sparse on the hospital menu and suprisingly so is ketchup. I have been avoiding foods that need a lot of prep time in the kitchen or could attract germs, but considering how much more active she is trying to be I think I need to add more protein to her diet.

So tonight will be sloppy joe night, that should take care of her desire for meat and ketchup at the same time. While at the same time keeping the chance of cross contamination in the kitchen to a minimum level. At least half of a sloppy joe comes out of a can after all.

Our day today is made up of running around MDA and getting tests done. Ann had to get a EKG this morning for the insurance company. They requested one before releasing the funds for the BMT. Then we had to go and get blood drawn ahead of a Doctor's visit.

On the way in we ran into the social worker from the BMT clinic. Her name is Brandy and she is just a genuinely wonderful person. She gave us the news that the insurance company has approved the funds for a donor search! Hurray!

So MDA will start checking the donor databases and doing high resolution matching on the preliminary results they told us about earlier. We should start getting some information about the quality of the matches in two or three weeks. Fingers crossed - knock on wood.

Although Ann is walking around today she is having some trouble. During the last round of chemo they asked her to put steroid drops in her eyes. Yesterday they said she could stop, but the effect of the steroid is still there and just killing her eyes. What she describes to me sounds like the worst case of pink eye I have ever had.

She is also starting to display some heavy bruising on her hands and arms. That's alarming to me. I know the mechanism causing it is probably her platelet count being suppressed after this last round of chemo. But it still tears me up to look at it. Ann promises that she will ask the Doctor about it when we get in to see her.

The low platelet level promisies that we will have a transfusion today. Which is ok and will go along with the LP that showed up on her schedule unexpectedly today. I hope that the Doctor has the results of the last LP taken in the hospital during round two today. I also hope its as clear as the other two.

More updates later today.

Updates

2/7/07 Day 28

Hooray, no more eye drops!!! I still can't see, but I'm happy.

Tomorrow's schedule just got a little bit fuller. I just found out that I have another lumbar puncture scheduled for tomorrow and more chemo. I'm not crazy about that. I tried to explain to my nurse that my schedule was fully booked with appointments and should we try to shift things around. She seems to think that things run on schedule in a research hospital. As if. I haven't been in to see a doctor on time since I got here. We'll see what happens. I get the feeling that I'll have more appointments on Friday and Saturday. Pooh. If you're really lucky and I'm feeling up to it, I'll talk about my chicken legs this weekend. Oh boy. :)