Day +96 “10 years and counting”

St. Patrick’s Day, Monday, March 17, 2008- Post Transplant Tests (Late Post)

Not quite the way either of us imagined spending our 10 year anniversary. It was actually planned to include sun, sand, tropical waters and no kids. A trip to paradise on hold (for at least a little while.) Instead we spent the ENTIRE day sitting in doctor’s offices and waiting rooms.

But we were together and that is what I was truly grateful for. The long waits in the offices gave us time to reflect upon what a truly blessed life we have had together. A life blessed with four beautiful children who teach us more about unconditional love and forgiveness. A life filled with family and friends who teach us about charity and compassion. And, yes, a life that had to include Leukemia, long hospitals stays and a lot of waiting in waiting rooms, has been blessed. If you already didn’t know it, Todd is an amazing father, husband and friend. I think this blog site that he set up from the beginning shows many of the qualities that I saw in him the first time we met. I guess I’ll have to share our story another time. But for now I will say “I love you, Todd. You are my eternal companion.”

All of our waiting in waiting rooms for two tests, that together totaled 1 hour and 30 minutes, had us gone all day from 9-5. The good news from all the waiting is that the Pulmonary Function test and the MUGA (heart) test show from initial results that I passed. Yea me! In other words, my lung and heart functions were not damaged during the transplant procedure. Dr. V will have the finally results when I see her on Thursday—the BIG day—Bone Marrow Biopsy.

Please keep me in your prayers. Please pray that the procedure goes well and that no cancer cells are detected and that Tracy’s cells continue to be successful and that my blood cells are still no longer present. My testimony of prayer has only been strengthened by all of you: our families, friends, neighbors, community and many of whom were strangers and now have become friends.

I hope that 10 years from now you all are still keeping up with us and that the words always include “Cancer FREE!”

Days 17 and 18 Consolidation – More long days at the BMT clinic

It’s amazing what a difference a day makes. Yesterday Courtney was feeling much better, with virtually no headaches or nausea. The day started off with a fairly quick and painless visit to a respiratory therapist who performed the PFT (pulmonary function test). Courtney didn’t rank up at the top, but we think she passed. Then, after a quick breakfast at Wendy’s, we headed to the BMT clinic. They were really nice and let us come in two hours before our scheduled appointment. She had her blood drawn and then we waited for about three hours. The wait was for the Procrit shot and platelets. The platelets eventually arrived, but the Procrit didn’t. Apparently it’s a somewhat complicated and potentially lengthy process for the insurance company to pre-approve the Procrit due to it’s expense. She didn’t get it today either.

CBC results for the past two days:

	Wednesday	Thursday	Normal Range
WBC	5.1	15.3	4.1 – 11.1
RBC	2.70	2.62	4.01 – 5.31
HGB	8.2	8.2	12.1 – 16.1
Platelets	15	74	140 – 440
Neutrophils	3.5	13	2.0 – 7.5

So, what do these results tell us? That Neulasta really works. On the 5th, Courtney received an injection of Neulasta that’s supposed to help increase her Neutrophils before her bone marrow is fully functioning again. This is to help avoid the potentially dangerous neutropenic fever. So, in a way, her WBC and neutrophil counts are artificial. The hope is that by the time they drop down, her bone marrow will be back to running normal and her counts will stabilize. Apparently this is the same thing Procrit is supposed to do, except for her RBC’s. At least she can have those infused. Which she did today.

The other thing we learned from the CBC today is that she received a really good dose of platelets yesterday. Usually we see an increase of about 15 to 20 when she receives a bag of platelets. After receiving a bag on Sunday, her count was only 4 on Tuesday (not so good). Then Tuesday’s bag increased her platelets from 4 to 15. And finally yesterday, she got her bag of super platelets and her count increased to 74! So, hopefully she’s good to go for a few days.

It seems like today we got twice as much done in half the amount of time compared to the previous two days. Courtney received two units of blood, had a nice long visit from the Social Worker, and had her bone marrow aspirated. All in a day’s work.

The social worker was nice and asked Courtney a lot of personal questions. Apparently social workers get paid to be nosy and pry. Courtney was very honest and open with him, and he really seemed impressed by her attitude and demeanor considering what she’s been through, is going through and is about to go through. It’s likely she’ll be getting a “go for transplant” from him.

Right after his visit, she was taken to another room where some nice people, including a nice man with a very good drug called versed, painfully extracted some more of Courtney’s bone marrow from her hip. While the versed didn’t knock her out or take all of the discomfort away, it did help her to relax and not care so much about what they were doing. She said she’s going to ask for a little more next time. The unfortunate part is there WILL be a next time and possibly MANY more next times. : (

So, after three fairly long days at the clinic, we aren’t scheduled to go back again until Monday, and that should only be for a blood check and maybe blood and/or platelets depending on the results. We’re looking forward to having a nice three day break from doctor stuff and to having a nice relaxing weekend at home. We have 19 more days to enjoy at home until Courtney’s admitted for the transplant. But who’s counting?

One more thing – I looked up Procrit at drugstore.com. They sell it for $5099.63 for 18 ml. It always cracks me up when they price it a few cents under an even hundred. As if $5099 looks so much more affordable than $5100. Just for comparison, a can of Coke is about 354 ml. At that price Procrit costs $1,072,206.39/gal. Although they would probably sell it to you for $1,072,199.63/gal. No wonder the insurance company is stalling!

Day 4 Consolidation

The past two days have been a battle with the spinal tap headache. I’ve read that it’s often described as “the headache of all headaches.” Courtney says, “that pretty much sums it up.” It’s really frustrating, because if it wasn’t for the nasty headaches, her stay at the hospital this time would be pretty much a piece of cake.

Yesterday was probably the worst day of the week. She was given chemotherapy to fight cancer, blood to fight anemia, morphine to fight the headache, benadryl to fight the itchiness from the morphine and phenergan to fight the nausea from the headache that caused her to throw up for the first time since this whole ordeal began.

Meanwhile, I got to leave the hospital to go to work and then spent the evening trick-or-treating with the kids (as if they needed more candy). I could dump out two thirds of the candy and they would never miss it – and I probably should – but won’t because I like candy and have a hard time throwing away perfectly good candy. Anyway, I can’t tell you how guilty I feel having so much fun with the kids while Courtney is so miserable in a hospital – even if it is a nice hospital.

And even though I know Courtney would tell me not to feel guilty and that I should just enjoy the time I have with the kids, I can’t help it. It doesn’t seem fair that I should go about doing ‘normal’ everyday activities, while she’s confined to a 10 by 10 room. I feel guilty every time I leave her in the hospital, and every time I sleep in our comfortable bed at home, and every moment that I have fun with the kids, and every meal that I can eat without feeling nauseous, and every time I go shopping, and I feel guilty every time she feels pain of any kind while I go about without so much as a sniffle. I know it’s a blessing that I can do all of this and do what I need to do to keep our family afloat, but I still feel guilty. I just wish I could trade places with her, even if was for just a few hours. Too bad we can’t tag team while fighting this disease.

So, after a rough day yesterday, Courtney followed it up with a slightly better day today. Today was an off day for chemotherapy and she didn’t need blood. So it was a quiet day from the IV pole. Her headache also subsided for awhile and she was able to get up and walk around a bit and eat some decent food. Unfortunately it came back pretty bad after dinner and she asked for some powerful meds to help her relax and sleep pain free. Hopefully the pain free afternoon was an indication that her spinal fluid is returning to normal and the headaches will be gone for good. Just in time for the side effects of the chemo to kick in. Life just isn’t fair sometimes.