Day Zero

I have almost made it through Day +3. Each day is a struggle and I have gone back to taking things one hour at a time because even one day at a time is overwhelming.

From now on if anyone wants to complain to me about how tired they are be prepared to tell me your white blood cell and platelet number. Without these numbers I will not know if you are just regular person tired or cancer tired. I’ve learned there is a difference. Cancer tired means fatigue so deep that sleeping for 12 hours a night does nothing to touch it. Laying curled up in a ball under the covers you still need more. A deeper sleep, more relaxation until you no longer feel the pain in your bones. You feel empty and spent with no end in site. The doctor says that I’m exactly where I need to be. He pats my leg and ask me if there is anything he can do for me. I ask when I can go home and he laughs and says its too soon to ask that question. I ask him when I will start to feel better and he gives me a look and says we’ve already talked about that. My blood counts have to plummet some more and then they give me drugs that keep them down to give the new marrow a chance to graft before the impending GVHD hits. Sometime around day 20 I might start feeling better.

Day Zero

I haven’t written about the actual transplant yet because it was mostly a drug induced blur to me in that day and days following. The day of the 14th I knew my German boy was having surgery but I thought it would be late on the 15 th before I would get the cells. I spent the day fighting a migraine and resting since it was my rest day. Victoria came over and we laid in my hospital bed with the iPad propped on my meal tray and plugged into my IV pole (we improvise well) to watch the season premiere of Girls on HBO GO (thanks B!). I was falling asleep during even though the show was hilarious and feeling a headache creeping on. By the time Victoria left it was a full blown vomiting migraine. There is speculation about what is causing my headaches but I have been receiving IV Zofran for nausea and a side effect of that is headaches and a side effect of my headaches is vomiting. So, nix the zofran.

The head nurse came in and introduced herself nervously while I was busy dry heaving into a bucket. She said there was a mistake and no one had let me know that I would be receiving my transplant cells within a few hours. The day nurse didn’t know that it would be happening but the night nurse found out and had a small panic attack and called the doctor. She let me know that I could call people to come be with me for the new cells. I thought that I would just be doing it on my own since Jeffrey was home with the kids. The nurse gave me IV pain and nausea meds to try to get on top of the migraine since at this point I was way more concerned about how bad I felt than talking to doctors. I managed to send a quick text to Jeffrey that my cells have made it to the US and would be to the James by 2:00 and going into me by 3:00 am. Then I laid face down on the bed waiting for my hell to end.

I felt a gentle rubbing of a hand on my arm and when I looked up it was Dr. Benson. It was close to 11:00 pm at this point and I had already seen him earlier that day and he was wearing different clothes so I knew he had come back to see me. I joked that shouldn’t he be home trying to get his boys in bed and he said that he wanted to come back in to talk to me about the transplant himself so that I didn’t have to hear it all from the on call doctor that I don’t know. Such a sweet man! I don’t remember specifically what was said in our conversation because I was fairly high at this point but I do remember that he told me that my donor cells had made it across the ocean and were just leaving on a flight from DC to Columbus. It would take one hour for the James to process the cells and get them to me. I asked Dr Benson if he had a flight tracking app for following the bone marrow to its destination kinda like the Santa tracker. He said no but thought it was a great idea. He left to go do final preparations for the transplant and the nurse came in to give me my pre-meds. I was already high and then I got hit with IV Benedryl and Tylenol. I felt my eyes roll back in my head just as Jeffrey came in and plopped himself in the recliner. I don’t think I even got to have a conversation with him because I was snowed. Thankfully, his mom came to watch the kids overnight so that he can be with me for the transplant. Unfortunately, that meant that he got no sleep that night And stayed with me the next day since I was still out of it and felt hungover from meds and woozy and weak.

The actual event was anticlimactic compared to the preparation and excitement. I saw the bag of cells but didn’t get a picture because I was so out of it. It was a huge bulging bag of thick red fluid. I was told it contained three times the amount of cells that I would need for a successful transplant. My donor went through surgery to remove the cells from his hipbones and they got a very large amount. This article explains the donation process in case you’ve missed it before. As far as my part of actually receiving the cells it was as simple as a blood transfusion. The IV bag was connected to my central line and the cells flowed in over three hours. They try to get them in as fast as possible but my blood pressure was dropping low so they had to slow the drip. The nurse needed to stay with me for the entire time taking vitals signs (BP, heart rate, body temp and oxygen saturation) every 15 minutes. The transfusion was done by 6:00 am and by the time I woke up I felt like I had been hit by a truck. The doctors told me that it was a rest day and I stayed in bed letting Jeffrey answer texts and phone calls.

This is my theme song for the transplant:

Dancing on my Own
Robyn – from Girls Volume 1 Soundtrack

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Posted on January 18, 2013, in Uncategorized. Bookmark the permalink. 4 Comments.

  1. Wow wow wow. Thank you for finding the juice to type all that. Let’s hear it for burly German boys and the power of their cells . . . sure can’t wait for your body to get to use them. XOXOXOXOXO

  2. Thank you for sharing…you don’t know me, but I’m very grateful to hear your story. God Speed to recovery.

  3. Jeannie Brigger

    I don’t know how you’re managing to type or even dictate your updates, but thanks for making that effort. I think of you often and hope you’re having a less-than-awful day, or even hour to get a respite from the pitfalls you’ve been describing lately. and every time I think to myself, “I’m SO tired” I think of you and my sister in law (who has MS and explains the fatigue as mind numbing). anyway, here’s hoping each +day gets a fraction easier.

  4. Thanks for the update. I hope you are having a good hour-day when you read this. Thoughts and prayers for you, your friends and family, and the medical staff helping you through all of this. If in a year you decide to meet up with your German donor I would love to send a few words of thanks to him also. Hang in there!

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