My Journey

I've been home going on four weeks now and things are going pretty well. Last Friday, I met with my Stanford doctor as part of my one month post-transplant visit. Though I had only been home for less than three weeks, they count from the day of the transplant and not when I was discharged from the hospital. Everything was fine. He was very happy to see my progress (and so was I) and all my counts were pretty much back to within the normal range. Because I was progressing so well, he said it was okay for me to go outside now with just a normal mask and not the hepa mask, and it was okay for me to eat take-out food again. This was really good news - the fact that was able to go outside and take walks around the lagoon again. I was starting to get cabin fever with having to be inside the house all day long and not even being able to open any doors or windows. I still had several more months of recovery to go. I still can't do a lot of other activities such as gardening, golfing or...

 It's been a little over a week now since my return home from the hospital. It feels great to be at home and sleeping in my own bed! It was also good to see my kids again-- I had missed them a lot especially our littlest one. The kids had helped their mom put up balloons in our front yard to welcome me home which was really touching but the welcoming didn't last too long as then they reverted to their normal selves and started bickering as normal siblings do. Ah- as hectic and loud as our household is with 3 kids, at least it was good to be home!  This past Friday, I had a follow up appointment to check up on my counts and it went well. My WBC was at 5 and my platelets were at 164-- quite a significant improvement from where it was at .1 and 10 respectively a week prior! Since my counts were all good, the physician said it was fine to remove my port and that's how we finished the appointment. My port was removed- the whole procedure took less than 10 minutes- and it felt go...

Yesterday was Day +10 and my counts continued to go up. My WBC was at 1.4 and platelet counts at 24 but the total ANC count was 830 (greater than the 500 required for discharge) so they said I would be able to go home the following day. SWEET! It was the good news I was waiting for. All my walking around the floor, the physical and mental determination to walk even while nauseous and in pain was all worth it. It has led to a more faster recovery post transplant and I'm seeing the benefits of that perseverance.  I am going home at Day +11, one day earlier than their revised date and 3 days earlier than their original estimated discharge date. The nurses said that the record they've seen was someone leaving on Day +10; I'm at Day +11 today and that's not too shabby at all. I'm so excited to go home today, see my kids and sleep in my own bed!  I have to thank all the nurses and doctors here at Stanford hospital. They did an excellent job in taking care of me during my ...

Today is Day +9. My counts are still at .1 and haven't moved at all for the past couple days. The doctors said this is expected and I wouldn't see my counts start to go up until engraftment occurs, typically by Day +10 which is tomorrow. Hopefully when they do my laps later on today, I'll have gone up a little bit. My platelets have dropped all the way down to 10 (my average is 150) so I had to get a platelet transfusion Thursday night. If a patient has low platelets, it makes them susceptible to bleeding. The transfusion went fine although I did get an allergic reaction of itchy eyes which wasn't anything serious but they had to give me benadryl to counteract the hives. Benadryl knocks me out so I actually got some pretty good sleep in that night! I've started having the side effects with being neutropenic. On Wednesday night I started getting some chills and had a low grade fever of 100.2. It wasn't enough to put me on medication though and it passed fairly qu...

Today is Day +5 since my stem cell transplant. I've felt pretty good the last several days. No nausea, no fatigue or other side effects. It's quite a contrast from the previous week where I was feeling everything bad. Since I haven't had any nausea the last several days, my appetite has come back and I've been eating as much as I can off a combination of home cooked food and hospital food. I've also been trying to get 4 miles in by walking twice a day while I have the energy. I've been waiting for my counts to drop and dreading the side effects- fever, diarrhea, nausea, mouth sores, bruises- that come with having essentially no WBC. Yesterday, my counts dropped down to .1, the lowest point it will go- essentially at zero- before it will start to go back up. When the nurse told me my counts were at .1, I said "SWEET!" and she said she had never had a patient who celebrated their counts being that low! Well, when you know it has to go that low before it ...

 I've been feeling pretty crappy the last several days. Rounds 2 and 3 took quite a toll on my body. One of the docs said that the high dose chemo I was receiving was 30x stronger than the RCHOP regimen I originally had 5 years ago. Well, I definitely felt how much stronger it was. I've been nauseous and light-headed the past several days and I haven't had much of an appetite at all. The worse is they have me on a 24 hour fluid drip to flush all the chemo out as it can cause a lot of damage to my liver and kidney but what that does is that I end up having to pee every hour, so I'm pretty sleep-deprived. It stresses me out going to sleep as when I'm about to dose off, I have to get up and pee. I asked the doctors if they could lower the rate of fluid drip at night so that I don't have to get up as often to pee and finally, after four days, they said they will decrease it starting tonight.  I've been on a vicious cycle in the past four days. The nausea, lack o...