Monday, March 21, 2016

(3-21-16) Twelve Days Post Bone Marrow Transplant

I held off on writing this in hopes that I'd have good news, and everything would be neatly packaged.  I temporarily forgot what a cruel sadistic bitch cancer can be. I'm not wanting to be "Doom and Gloom" either. Still, the truth/the facts need to be shared, if only so I can relieve myself of the burden that I'm carrying. I'll also do my best to share some of the brighter moments in my life here because I want my readers to know that I do have a few good things going on. If this seems jumbled at times, please understand that I'm running on empty and I really should be in bed. Speaking of bed, I'll start with the good news that my long-awaited CPAP supplies arrived this week. My tubing was full of holes thanks to one of the cats, and I couldn't breathe. I've managed to sleep really well since receiving the supplies 3 days ago. The only "bad" news is that they are no longer completely covered under my new medical insurance and I had to fork over 20%. Still better than paying full price!

Bone Marrow Donation Day 1 (3-8)

Up before the buttcrack of dawn (4:15AM) to pick Shilo up from work in Hollywood, then drive home to Long Beach, get Daniel out of bed, feed him 2 bananas (for the potassium) and have him take 5000 mg of calcium in addition to all his other medications and a light breakfast and get him to City of Hope at 7:45. Naturally, the traffic wasn't cooperating, and I was having a hissy fit. Still, we got there in time, and Daniel managed to put up with the IV's in both arms. One to remove the blood and stem cells, the other to return the blood, calcium, and saline solution. Once he was settled (an hour later) I took a walk to the cafeteria building and grabbed breakfast (scrambled eggs crisp bacon and oj) As I walked back to the building where Daniel was, I got a call from my girlfriend telling me she had arrived and was waiting for me. It took everything I had for me to not let go and just cry. She spent most of the day with me, and even went to visit Jonathan. She also drove me to Smart & Final so I could get a large box of "Cup of Soup" for Jonathan because he was having difficulty swallowing and couldn't hold down any food. She had an appointment later in the afternoon, so she left early, but she was with me when I really needed someone, and I'm still trying to figure out how to show my gratitude to her.  "Pay it forward" I guess.  After his 8 hours was up, I fed Daniel and then we went up to see Jonathan.  Yes, I was (justifiably) worried, and he was surprised when I told him that we'd be back in the morning so Daniel could donate more. The way it was explained to me is that because Jonathan is bigger and outweighs (or outweighed) Daniel at that time that he'd need more than what could be donated in an 8 hour period. The drive home was uneventful, but as soon as I got home, I had to drive Shilo back to work. I got home at 8PM and was asleep by 8:30.

Bone Marrow Donation Day 2 (3-9)

 Up at the buttcrack of dawn (5:45AM) and pretty much repeated the previous morning except the traffic was better, and I felt a little more confident and relaxed than the previous morning. I also knew that my girlfriend wasn't going to be with me until the afternoon, and that she would have her Dominant in tow as well. Since my stress level was low, I was actually able to enjoy the day and I visited Jonathan at lunchtime so he could get me food (at his insistence) and by the time I got back, my friends had arrived.  We had a relaxing conversation and when Daniel was finished, we all went to visit Jonathan to wait for the bone marrow transplant. They stayed for just a little while, but Jonathan's face lit up when he saw them, and, in turn, it made me happy.

The Bone Marrow Transplant (3-9) and Aftermath

The transplant was actually much less intense and exciting than I thought it would be. The oncologist came in and talked to us (including Jonathan's girlfriend) about how it is done (the same as a blood transfusion)and signs to look for.  Halfway through the first bag, I took Daniel home so he could recover from the excitement from the past two days. I woke up briefly at 8AM and gave Daniel his meds, and then slept until around 3PM. When I called Jonathan, he was very weak and sick feeling.

The Days Following

Because he was feeling so bad, I held off on calling Jonathan directly (I called the nursing station instead) until Saturday afternoon (3-12) and I told him I'd be there Sunday at 4:30. My ex-husband was leaving as I arrived, so I said a brief "hello" as he walked out. By this time, Jonathan had gone 2 weeks without adequate nutrition due to the vomiting, and the oncologist explained that he would be giving Jonathan the necessary nutrients via his IV.

The Past Week

I knew that Jonathan was feeling rotten, so I only called him and spoke to him twice. I took Daniel with me yesterday (3-20) and we arrived at 4:30 and stayed an hour with him. The change in the past week is remarkable (and not in a good way)  Jonathan is VERY sick, unable to eat anything. He's getting nutrients via IV to keep him alive, and he had a platelet transfusion early Sunday morning, and he will get another PLUS a regular blood transfusion early this morning (about 3AM)

Ask me if I'm worried? Well, a little bit. He hasn't been able to eat and hold down regular food for 3 weeks, and if he gets out of bed, he vomits. For the first time since his original diagnosis in October (5 months ago) he talked to me about dying, only this time instead of crying and saying he didn't want to die, he spoke about it in a very matter of fact way. I can't even express how much it disturbed me.  He also told me that he's tired of most people and that he was glad I didn't call him every day because all he wants to do is sleep. I told him that I will visit him every Sunday at 4:30 because it's the most convenient day for both of us.

My Thoughts

I'm thinking of meeting up with my ex-husband later in the week (after Wednesday) and discussing my concerns with him. I realize it won't change anything, but I think in this case, we really need to present a united front. I don't think he understands just how serious this is. I'm wondering if Jonathan made arrangements for when he dies (I mean, we're all going to die eventually) and I'm not even sure how to approach it. Parents shouldn't even have to think about stuff like this. Still, with Jonathan failing and his attitude, I have no choice but to consider this.

The Bright Side

Yes, there's a bright side! There is a good chance that this is temporary and Jonathan could get through this hell in the next few weeks and even have a full recovery. This is "just" a waiting game while his body adjusts to (yet another) change.

I saw my (new) Therapist/Doctor on Friday and I'm down to 201 lbs. I'm not dieting or starving myself, but I've changed what and how often I eat, and it's paying off. I really dislike changing Therapists, but my last one retired in January. Maybe the discomfort is related to having to open up to someone new. I don't hide my lifestyle, and sometimes they can be unintentionally judgey. Her only questions were about jealousy and/or abuse. I think I answered her concerns to her satisfaction.

Finally, Daniel hasn't had any issues/side effects from giving his donation, so he will be going home tomorrow (Tuesday) night. I think the past 3 weeks have been difficult on him because he misses his school. Also, in the remote possibility he has to do this again, he won't have to stay with me so long. We were extra-cautious because of his seizure disorder, but since it was so easy, we won't be as worried.

Now I can go to bed.



No comments:

Post a Comment