Reflecting on this experience is hard for me because W O W it was tough... and it still is tough at times. I've been out of the hospital for a little over a month now but my recovery isn’t over yet. More on that later.
To pick up where I left off last, on Tuesday, March 12, I had my first day of cranial radiation. I had to wear that face mask thing that I posted about in my last entry. Thankfully the session was only about fifteen minutes and I listened to Pandora the whole time. I had cranial radiation for four days, so through Friday.
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| Me being silly and thinking I'm funny after my first radiation session |
The next day I went in pretty early to get radiation done and I had some pretty bad jaw pain afterward. Not fun. I went in early because later that day I had surgery to get my Broviac (another central line like my port) put in and a minor surgery in my abdomen. The recovery for that was harder than I thought but by Sunday, March 17, I was ready to be admitted to the hospital for the transplant. That night I had some chicken nuggets and rice and it was the last meal I ate for weeks (didn't know that at the time).
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| Decorated my room to make it look as nice as it could... for a hospital room |
Treatment to get rid of my own bone marrow consisted of six sessions of full body radiation and intense doses of two different chemo drugs. The full body radiation made me so so nauseous and we weren't really expecting that to happen. Needless to say, I stopped eating all together and it was pretty miserable. After three days of the radiation, it was finally over! The sessions were a lot longer than the cranial radiation so I held on as best I could.
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| Me ringing the bell after I finished all my radiation! Woohoo! |
On Thursday (3/21) I started a chemotherapy called Thiotepa. With this drug apparently you can get burned so I had to take a shower every six hours for two days. Doesn't sound that bad but at midnight and 6 AM I really didn't feel like getting up!
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| One of my favorite nurses, Shannon, drew this so we could keep track of how many Thiotepa showers I had left. |
After Thiotepa came the big drug in my opinion- Cytoxin. I had that on Saturday and Sunday and it made me sooo nauseous. With this drug I had to make sure I was going to the bathroom every two hours so that my kidneys would not be damaged. There was two days of that and then conditioning was finally over!
On Tuesday, March 26 I received my bone marrow transplant! It was honestly anti-climactic like I knew it would be but hooray for new cells!
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| My new cells for my bone marrow transplant! |
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| My nurses setting up the new cells. The whole stay I was hooked up to A LOT of bags and lines as you can see. |
The next day my hair finally started falling out. You know how I had it cut back in December? Yeah, well it really didn't start falling out until this day. Oh well. Shorter hair is easier to deal with anyway.
After a few days, the side effects from the chemo and radiation caught up with me. The team made sure to warn me about a side effect called Mucositis that happens to pretty much everyone. Normally it presents itself as mouth sores and sores that go down the esophagus, making it hard to swallow. It can travel through the entire GI track. That's what wound up happening to me. To spare the details, basically whenever I had to use the bathroom it felt like boiling water coming out of me. I had a morphine pump for help with that. That lasted around 12 days. That was ROUGH and like nothing I've ever experienced before. I had some other side effects like some rashes on my hands and face and fevers but those weren't really a big deal. My counts were starting to come back and it was clear that the bone marrow transplant was working!
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| April Fool's day- this was Dad's idea. It put a smile on my face. |
On April 13, I got my feeding tube in. Up until that point I had been fed through IV which is pretty incredible if you think about it. It's called TPN... I don't really know much about it but I really couldn't eat for like the entire hospital stay so that was a lifesaver... literally.
On April 24, I hit a big milestone for me- I was finally able to swallow these big pills that I have to take four of three times a day. That may sound silly and you think by now I'd be used to it but I still hate swallowing pills. I don't know what it is, it's just harder for me. So when I was able to get my doses down, I was basically home free.
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| Towards the end of my hospital stay I got to go outside which was EVERYTHING to me! Being trapped in my room for so long was miserable! |
On April 27 I finally went home! I was in the hospital for exactly six weeks, the longest stay I've ever done. I was so grateful and I am so grateful to be home.
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| Finally going home! Marti busted me out and we surprised the family by picking them up from the airport (they were in Utah for Mallory's graduation) |
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| My crazy schedule of meds and feeds that I came home on. It's different now that I'm eating but for most of May this was my life and it was frustrating to say the least. |
This past month has not been easy and I have been discouraged often. It has really tested my patience. I came home on a lot of meds and a lot of scheduled feeds throughout the day and night. It was exhausting. I got this side effect called Somnolence Syndrome that can happen to those who have received radiation. With that I was tired, lost my appetite, and had low grade fevers for about two weeks. I was miserable. But it's over now and I'm feeling much better! I started an appetite stimulant a little bit ago and it's made the biggest difference! I still have the feeding tube for now but I am basically back to eating three meals a day which is huge for me and I'm so excited about! I love eating and while I'm stuck in my house it's one of those things that I can enjoy.
To wrap up, I am getting better and stronger everyday and I think I'm finally starting to see that. I have rules about visitors like if you come to visit you have to wear a mask, and take your shoes off and you can't have been around anyone who has been sick recently, etc. OR sit outside. No masks are required outside :) The only places I'm allowed to be is home, outside, or clinic until the end of June. After that, things get a little looser (not much) but all of these precautions are to keep me safe while my body builds a new immune system. It is going to take the rest of the year to truly recover from this.
I am so grateful for modern day medicine and the opportunity I had to receive this bone marrow transplant! My blood type changed from A- to A+ (my mom thinks that’s so funny) and according to my doctors, my bone marrow is 100% my donor's now. All the difficulty was and is worth it.
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| Home and healing, with Max of course |
As always, thank you for the thoughts, prayers, and messages throughout the last couple of months! The care and support you all offer me means so much! XO
