Finally, an update! Day +65

Sorry, it has been a long time since my last update. Fortunately, there has not been anything too exciting to report. I got out of the hospital after 6 days and a new PICC line.

I was running a fever a couple of weeks ago, but it was during Seattle Cancer Care Alliance hours. So instead of going to the hospital I went to the SCCA's transplant triage. My fever was not very high, so I just had some cultures taken and a biopsy of my skin. (I developed a fleeting rash while I was there.) Turns out I have a mild case of GVHD (graft vs host disease). Since I have no symptoms, there is nothing needed to be done to treat it. I am also starting my tachrolimus taper. Tachrolimus is the anti-rejection/anti-GVHD drug. I will be tapering it until January, but at least it's a start. The side effect that bothers me most is hand tremors.

In a couple of weeks, I am starting my "exit" appointments. These are all the specialists that I saw before the transplant. They check to see how things have changed since the transplant. For example, the dentist will see if my mouth is dry after radiation. (yes, it is.) And the OB/GYN will check my hormone levels to see if I need hormone replacements.

I have also been home to visit Travis and Loghan in Puyallup a couple of times. As I get further out from transplant my appointments get less and less. My lovely sister-in-law is putting on a fundraiser in Puyallup tomorrow and I want to go, but have been advised against it. I am still at high risk for getting infections and can not get any of my immunizations for a year. (yes, I have to start over with shots again). Thanks for all your hard work Tara! I can't wait to see the pictures.

Back to the Hospital

Tuesday night I developed a fever of 101 degrees. You are supposed to head to the hospital with anything over 100.8. So, we headed over to UW (my Aunt Sue and I). I was hoping not to "check-in", but that did not happen. Shortly after getting there I developed shaking chills. Then my blood cultures from my central Hickman line came back positive for bacteria. I ended up being admitted and they pulled my Hickman line. I am now on antibiotics for 4 weeks and will be here until at least Monday when the Picc line nurse can put in a Picc line. I can't leave until I have a semi-permant access so that I can administer the IV antibiotics to myself. Heres to another week in the hospital ; )

Day +26

Over a quarter of the way to my day +100. (When I get to go back to my home and original oncologist-not transplant doctors) I have a lab draw today to see if my tachromlimus levels are okay. (This is my ant-rejection drug.) I also have an appointment with the cardiologist to see how my periocarditis is looking and if the Prednisone steroid is helping reduce the inflammation around my heart. Looks like I will not have any appointments this weekend, so I get the weekend off. Travis and Loghan are going to come up and visit tonight and then go on a cancer patient boat trip with me on Sunday around Lake Union.

Day +23

I am outta the hospital!!! I was discharged on Sunday (yesterday) about noon with 300 neutraphils. It has been just shy of a month in the hospital. Since I was still neutropenic, I had to administer IV antibiotics and fluids to myself via a mobile pump hidden in a backpack today. But, overnight my neutrophils are 800, so I am off antibiotics for now. And, I get to see my little Loghan tomorrow. Travis is going to bring him for a visit tomorrow after work. I am staying at the Pete Gross House in a studio-which is only for SCCA patients and a lot of them are transplant patients. Just FYI: the last time I lived in a studio was in college, I lived by myself, and it was bigger and cheaper than this studio. My Mom is staying with me as a caregiver.

Today was full of appointments. Still way better then the hospital. Lab draw (thanks Kelsie), office visit, nutritionist, chest x-ray, and some lunch at the Red Brick Bistro. I also ran into 2 people that I've met through Kelsie that were "incarcerated" at UW at the same time I was. One is on the exact same protocol and days that I am (he got out 2 days before I did). The other is getting geared up for a transplant, he is just waiting to find the best match out of the tons of preliminary matches he has. Both are doing good and look great.

Day +20

Today, I narrowly avoided the colonoscopy and GI stomach biopsy. They had it ordered because I had diarrhea and queasy stomach. But, Imodium stopped the diarrhea and I was able to eat all day yesterday without throwing up, so I am off the hook for now. They were going to test for acute graft versus host disease GVHD, but it looks like that is not the case, at least for right now. My Neutraphils are 190 today. The neutraphils need to be around 500 to get discharged. This is when you are not considered neutropenic anymore. So, it's looking like Sunday or Monday to get outta here.

Day +15

WBC's are up to 300 and Neutraphils to 40. Numbers coming on up : )

Day +13

WBC's are now up to .28 or 280 and the neutraphils are .01 or 10. They should start shooting up anyday now! Travis got the keys to the Pete Gross House today. He says that it is cute and cozy. It is a studio. Has it's own washer and dryer.