Day +35

I started feeling a little better on Monday and have been improving. My throat isn't bothersome anymore but it isn't completely gone yet. I'll keep taking Claritin D for congestion until everything clears up. All of my blood counts looked good this week. No medication adjustments. The chimerism testing takes about 2 weeks so it'll be a bit longer until the results come in.

Day +28

My blood counts were fine on Monday, just needed some more adjustment for Cyclosporine. I started getting sick on Monday night. Just a runny nose and bit of a sore throat. A friend I hung out with was just about over being sick, but not completely, and I forgot to ask about it. A strep swab was negative, so it's probably a virus of some sort. The mucus has been clear, and I don't feel as bad as I did on Tuesday. I've been taking Claritin D to help, but there's not much else to do except wait. I'm interested to see how long it will take to get over with such a new immune system. Other than that, I'm doing well. Slowly improving each day. I've also noticed a difference in how well I'm absorbing food. In addition to the normal tests next week, I'll get blood drawn for chimerism testing to see how different my new immune system is and which cord took.

Day +21

My white blood cells had dropped on Monday, and they didn't get all of the lab results they wanted, so they ordered another set of blood work. They got most of those results today and my WBC's were going back up. Dr. Burt thinks they may be fluctuating due to Cellcept so he lowered the dose. The Cyclosporine levels should come back on Monday and Dr. Burt may adjust that, as well. This isn't uncommon, which is why they monitor everything so closely for a while. My other counts are normal or still rising.

I'm feeling great. No drastic changes. My gut is slowly improving and my energy is still increasing each day.

Day +16

I had the impression that there would be more restrictions than I actually have. Avoid public swimming areas, taking out the trash (wear gloves if necessary), dust, construction sites and major home remodeling, gardening and major yardwork. They will check my vaccine titers at my one year follow up to see if I need to be reimmunized. No live vaccinations, and I have to avoid people who have had one recently. Wash my hands after being around pets, and before/after all of the typical things you can guess. Avoid sick people, major crowds, go to the movies, shopping, and restaurants during slower times. I can exercise and go to the gym when I feel up to it. No diet restrictions.

I'll stay on Cyclosporine and Cellcept for 9-12 months until the risk of graft rejection is gone. I'll also be on Acyclovir, an anti-viral, Diflucan, an anti-fungal, Bactrim, to protect against pneumocystosis, and Magnesium, for Cyclosporine. I'll have blood drawn every week for a month, every 2 weeks for 2 months, then monthly. I'll go back for the first follow up in 6 months.

The bone pain went away yesterday, as they said it would. Still a bit tired from everything but, other than that, I feel great. The stem cells will start healing the inflammation that I have left, and hopefully the stricture, so I should keep feeling better and better until then. I won't be posting as many updates from now on, but I'll make sure any relevant information is on here and update how I'm feeling as things keep healing.

Day +14

Dr. Burt came by early and I got to ask the last of the questions I had. It turns out there are even fewer restrictions than I was expecting. I got discharged, went back to the room to pack, then got a cab to the airport. I didn't even have to wear a mask if I didn't want to, but I did until we got to the gate. I wasn't sure if I'd be up for all of the walking so the airport had a wheel chair for me and took me to the terminal. I got to skip the check-in and security screening lines, and got pre-boarding and picked my seat first. All for no extra charge.

I feel about the same as yesterday. The bone pain is slightly better and I'm, understandably, pretty tired. It's been 2 months to the day since I left for Chicago. It was a great 2 months, but I'm glad to finally be home. I'll make another post soon, hopefully tomorrow, about my restrictions and how things will go from here. Time to go enjoy my bed!

Day +13

My white blood cells were 0.5 this morning. That means the stem cells have engrafted and everything will begin to recover and heal. They transfused 2 units of red blood cells since my hemoglobin was right around the threshold. No issues with that. The bone pain has gotten worse but that's because my bone marrow is working its hardest right now. It will slow down soon and the pain will be gone within 48 hours. I feel a bit more tired, but I didn't nap as much with everything going on today.

They drew blood again to check my counts after the blood transfusions. My white blood cells were actually up to 1.2, which was high enough to discharge me tonight, but I want to see Dr. Burt in person one more time before I go home so I decided to stay until morning. They took the PICC line out so my arm is completely free now. I already have the discharge paperwork, prescriptions, and flight booked for tomorrow.

Day +12

They're giving me more Magnesium regularly because Cyclosporine, one of the anti-rejection meds, "eats" it so my levels are low. I'll probably stay on oral Magnesium until I'm off of Cyclosporine. My platelets are still up considerably from the last transfusion. My hemoglobin is close to the transfusion threshold so I may need another before engraftment. We'll see. I'm feeling great. Not much bone pain the last two days, and I've actually gained weight since I was admitted. Still exercising each day, and I'm no more tired than I would expect.

Day +11

The bone pain got a little worse later last night so I took Tylenol, in addition to Ambian, to make sure I'd get to sleep. Nothing exciting today. Two of my PICC line lumens weren't returning blood, so they put a small amount of TPA in the lines to clear out the clots. What little of my hair grew back between getting my head shaved and getting Cytoxan started falling out, so I had them shave what they could. The nurse had to use a safety electric shaver, not a real razor, since I have low platelets and am neutropenic. It still got the job done.

Day +10

They gave me another platelet transfusion this morning. Benadryl and Tylenol beforehand again. About when the transfusion finished I noticed a couple hives so they gave more Benadryl. They spread a bit more and I started getting a rash so they gave Pepcid, IV Benadryl and Hydrocortisone. That knocked me out for a while and took care of it. Dr. Burt said to make sure I get washed platelets if I need another transfusion. Washed platelets are put in a different suspension to hopefully cut out what I'm reacting too. They don't normally do it because it adds another step to the process and cuts down on the time they have to perform the transfusion before it goes bad.

Dr. Burt said not to worry about Mucositis and that it rarely happens with this protocol. My throat could be irritated from a number of things and it actually feels a bit better. Noticed a bit more bone pain today but it's still not bad. Dr. Burt is still guessing Friday or Saturday for engraftment and I should start to feel even better after that.

Day +9

I noticed what feels like a bit of a knot in my throat when I swallow, and it got a bit scratchy. Mucositis is pretty common due to the chemotherapy killing off the mucosal lining leading to possible inflammation and ulcers. The scratchiness went away so we're just keeping an eye on it for now. My platelets were back down to 32 already so I'll probably get another transfusion tomorrow.

Day +8

They gave Benadryl and Tylenol again for premeds for the platelet transfusion. It took about half an hour, and I had one hive and a small rash a little after it finished. They gave me more Benadryl and that took care of it. It's expected to need blood transfusions in the time between the chemo and stem cell engraftment. Until my body starts producing cells on its own, my blood counts will keep dropping.

I started to notice a bit of bone pain, intermittently in my back and legs, which means the Neupogen is working and stimulating bone marrow production. They can give me something for the pain if it gets worse, but it's not bad.

Day +7

My hemoglobin was 8.5 and has been dropping so they transfused 2 units of red blood cells today. Benadryl and Tylenol for premeds, and everything went fine. They drew blood again this evening to check my platelets one more time since they were close to the threshold for transfusion this morning, as well. They're down to 25, and they want to keep them a bit higher than usual because of the Crohn's inflammation, so I'll be getting another transfusion in a little bit.

Day +6

They started double the Neupogen today. Just two jabs in the abdomen instead of one. Nothing else new, really. Still feeling pretty good, just tired.