Note from Wil: You can read Anne’s Previous Entries here and here.
For the past couple of weeks, I’ve been on an emotional and physical roller coaster. Several times I have wanted to write about how Kris is doing, but there just hasn’t been time. The day after my last post I went to see Kris at City of Hope to check on her after her stem cell transplant and meet a friend to donate platelets together.
I walked into Kris’s room just minutes after she received her transplant. I had no idea how it was done. But it’s just like receiving a blood transfusion. And for some reason, it smells like garlic through your skin. So I walked into a room that smelled like she just enjoyed Chinese food for lunch. Although I like the smell of Chinese food, I’d been fighting off a huge headache all day so it was a little unsettling.
The stem cells they harvested from Kris had been frozen until she finished her chemo and radiation and was ready to receive the transfusion. Then they do a “flash defrost” and donate them back to her. They were able to get two bags of cells from her so that’s what they gave back. They were still a little cold and lowered her body temperature one degree and gave her a huge headache, along with a big wave of nausea. But she made it through. Next was the anticipated sickness and pain she was told she would experience because of all the chemo and radiation she got. It was all done so fast that her body wouldn’t catch up to it for a few days. Well, it definitely did.
She spent the past two weeks dealing with major stomach and intestinal issues. Her mouth, throat, stomach and intestines were full of open sores. Her tongue looked like it had been badly burned; almost like parts of it were missing. She could barely open her mouth to talk. She was losing the hair she had been growing back. It was terrible to see her going through all this. But she remained optimistic. Always asking me how our training was going. How the donations were. Making plans to come to San Diego to see us cross the finish line.
While Kris was dealing with all this, I wanted to continue to do everything I could to help. I went in to donate platelets to her the day of her transfusion. Unfortunately, my huge headache stood in the way of them wanting to do it. They told me that if I already didn’t feel that well, I’d only feel worse afterwards, so I should just reschedule. I was really disappointed, but I was feeling a bit nauseaus because of my headache, so that was probably the best decision. I rescheduled for that Wednesday.
I was very excited to show up for my appointment. My headache was gone and I was feeling great. They took blood from my left arm to make sure my iron level was alright, then hooked me up on my right arm. If you’ve never done this before, (that would be me) the needle is attached to a tube that’s split in half. The blood comes out in one tube, goes through a machine to separate the platelets, then goes back into you in the other tube. It’s amazing to me that they’ve figured out how to do this. Kris said this is the same way they got her stem cells. I asked the nurse why they can’t just do the same thing to separate the cancer out of the blood. She said it really is amazing how far they’ve come in research, but at the same time be so limited. I told her we were doing this marathon to raise money for research. She thought it was a great idea and that stem cell research really needed more attention. I agreed.
I got started donating platelets, even asking the nurse to take my picture for the website. But about 15 minutes into it, my vein wasn’t too happy with the pressure of the blood coming back in. It was causing a big lump and the needle had to be removed. They would try on my left arm. They had commented after my blood test that I was a great candidate for donating platelets (average count is 150 to 350, mine was 358). Unfortuately, those great platelets were making it impossible for them to go back into my left arm vein for anything. So again, I had to reschedule. But it had to be at least five days away because I would have big time bruising (boy were they right about that!). My next try would have me hooked up with both arms. One side to take the blood, the other side to receive it back. I was bummed, but determined to help Kris, so I came back five days later.
Again, I showed up. Excited to help, a little nervous that it wouldn’t work. But I figured it would all be fine. I filled out the wierd questionairre again (“have you had sex with a man who’s had sex with another drug using man since 1977?” What? Yea, I was in second grade in 1977. But I know they have to be cautious.). The nurses recognized me because now I was on round three. They hooked me up on my right arm to receive the blood back. Then, they hooked up my left arm to take the blood. Everything was good! Veins were looking great! Just start the machine!
Immediately, the machine beeped: “access point pressure low”.
“What does that mean?” I asked.
“It means the machine is having a hard time sucking the blood from your vein.” She called another nurse over to fidget with the needle and see if it would change. It beeped again. She moved the needle around again. More beeping. She decided to pull the needle part way out and re-stick my vein. Well, the first four times she did this, it was alright, but after the fifth and sixth time, it was really hurting. I didn’t want to complain. After all, what’s a little bruising compared to what Kris is going through?
“Your veins just don’t want to do this.” the nurse said. “It’s more common in women than men. You just can’t donate platelets. Sorry.” She sent me on my way with an icepack for the HUGE lump and bruise I would grow over the next hour. So again, vein failure.
Fortunately, my friend Amy, who I met through this whole marathon experience, has successfully donated platelets, and had several friends do the same. So even though it didn’t come directly from me, Kris still got her much needed platelets. Thanks Amy!
So I’ve been walking like crazy (when it’s not raining), and visiting Kris as much as possible. I talked to Kris on the phone Monday since I couldn’t get in to see her. She said they had taken her off of one of her medications, and may take her off another one on Tuesday. The thing is, Kris has been hooked up to a million tubes and bags. Actually, more like eight or so. So weaning her off all those things was a good sign. Her white cell count was going up. That meant she was able to fight off infection. She was really worried about getting pneumonia. (Her friend went through the same ordeal a year and a half ago. She even donated platelets for him. He made it through all of his treatment and his transplant. Unfortunately, he got chemical pneumonia from the radiation and died.) She made sure she got lung plates to cover her lungs during her radiation. So I’m sure that won’t be a problem for her. She said her doctor was hoping to have her home by the weekend! I was so excited for her, and very motivated. I walked fifteen miles over the past two days, constantly thinking about how great it will be for Kris to be home.
I was out running errands today when I called Kris’s cell phone. She always leaves it on, right next to her bed. It rang and rang, then the voice mail picked up.
“It’s me. I’m out running errands and I wanted to come by and visit. Just wanted to call and make sure you’re feeling ok before I come in. Call me back!”
Kris has been feeling pretty pukey, so I didn’t want to show up if that was going on. She has wanted me to call her first in case she wasn’t up for visitors.
About five minutes later, my phone rang. It was Kris.
“I didn’t answer my phone because I was talking to my doctor.” She said.
“Oh? And what does your doctor have to say?” I asked.
“He said I can go home at 4:00!”
“Today?” I yelled. “Oh my god! I can’t believe you can go home!!”
Her white count was up. She was off all her medication. No more pukey. She was ready to go home.
“Does Taylor know?” I asked. (that’s her son).
“NO! I called you as soon as the doctor left!”
She made it.
She’s going home.
I am so happy. So happy I went out and walked two more miles.
I called her at home a few minutes ago. The radiation caused blisters on her hands and feet. It hurts her feet to walk. But she’s walking in her own house.
All the great emails and mojo worked. Her positive outlook definitely got her through this much quicker than I ever thought. I can’t wait to go see her at home tomorrow.
Thank you so much for all of your support. I know it made all the difference!