Feel free to email me at crogoff [at] gmail [dot] com.
Sitting in the outpatient clinic, just started a dose of chemo. This is the first day of my third session of decitabine. Feeling pretty happy actually because my appointment wasn’t supposed to be until 4 pm and I was gonna have to kill 5 hours out here. So glad they squeezed me in.
Also my doctor just unexpectedly came in to check on me! He’s been out for a couple weeks on sick leave and I was bummed when I didn’t see him at my appointment this morning. But he just popped in and I hardly recognized him without his labcoat.
Also a woman just came in and asked if I like to write and gave me a handmade journal as part of a program called Writing for Wellness. Pretty cool.
And there’s an older Chinese man getting chemo across the room while laying down and listening to oldies. So that’s fun.
Ok gotta go, mom just came in with kebab and falafel!
29th May 2012
Notes: 2
I’ve been home for about a week and a half since my last hospital admission. I ended up being in the hospital for 3 weeks or so, with a day at home in between. It felt strange coming home after being away for so long but now I’m settled back into my home groove.
Health-wise, I am feeling good but getting a little extra rashy on some of my skin due to medication. I keep feeling hot flashes in my face and turning bright red, but I guess it could be worse…
I am on track to have my third round of chemo in a couple of weeks and go ahead with a second stem cell transplant sometime in the next month or two.
Oh and duh, the good news is that after my first round of chemo and new medication, my bone marrow biopsy showed I am remission again!
My hair has definitely grown a fair amount into a short pixie. It’s nice not feeling like I have to wear a scarf or hat over my head in public. I’m still waiting to see how it will turn out as it gets longer but so far its barely curly at all! It’s common for hair to grow back wavier or curlier after chemo so I wonder what my already very curly hair is planning on doing.
Right now I feel like I don’t even look like the same person I was last fall. Between my short, darker hair and the considerable amount of weight I’ve lost I feel like I have a new look….
aannnd that look tends to veer towards Tommy Bahama territory at times for a few reasons:
- Much of my clothes are now very loose-fitting
- I wear wide brimmed hats whenever I leave the house
- The hot weather + need to stay protected from sun has me reaching for blousy shirts and linen pants
- It’s summer and I don’t have to be anywhere so why the hell not?
Just don’t expect to see me in a hawaiian shirt.
As they say in hebrew, “yesh gvul!” (there is a limit).
I received a package of cards made by a class of fourth graders a couple of days ago from a family friend that is a teacher. They are so thoughtful and have sweet messages and drawings. I really was blown away with emotions looking at the cards. Many of them featured bird and nature themes. :)
I’ve been back in the hospital the past week because I started getting fevers when I went back home. All my blood cultures have tested negative for infection so it may have been something viral. Finally I’ve had a few days with no fevers so am feeling better.
I had to get my Hickman central access port removed (the line in my chest) and had a few days of being poked and getting IVs in my arms. Apparently the veins in my arms really suck so none of them were too successful and I had to get one placed in my neck instead by a surgeon. Today I will get my new Hickman placed, and while I’m out (thank you propofol), they’ll do another bone marrow biopsy too. 2 for 1 deal! It’s kind of cool, the surgeon places the Hickman in using live X-ray to make sure it’s in the right place and I only get a tiny incision. The down side is that I can’t eat or drink until this afternoon because of the anesthesia. I hope they will get to move it up earlier.
My blood counts are looking good and show my blood is 99.9% donor cells which is great. If I’m feeling ok, I’ll start my second round of chemo tomorrow (the new outpatient stuff I started a month ago). They’ll probably keep me here for the five days of that plus to finish my course of antibiotics. I’m not too worried about the chemo because the first round I had it I didn’t actually feel anything, so hopefully it will be the same this time.
Anyways, that’s all for now. I wish I was in Pittsburgh right now for a friend’s wedding and mini college reunion. Might have to avoid looking at all the photos online.
New puzzle I did at the hospital a couple days ago, showcasing my new interest in birds. ( I gotta do something with my free time!)
I had to be admitted to the hospital last week because of an infection; they thought I would only have to stay a few days but here I am finally being discharged 7 days later. I’ve been feeling fine most of the time except for some side effects from the antibiotics so it’s been really frustrating to be back here. I’m going to continue one of the IV meds at home for the next week which should be interesting because it involves some magical balloon of medicine I get to administer myself.
This is starting to feel like an uphill battle but my family has helped me so much in getting through this, and I know together we can face what lies ahead.
In other news, Game of Thrones and Mad Men are back, yeah!
I haven’t posted in a really long time mainly because I didn’t have anything new or interesting going on. After a week in the hospital a while back I’ve been taking it easy and finally feeling more energy the past week or so.
The main update is that this past week my doctor informed us that leukemia cells were found in my bone marrow from a biopsy I had a few days earlier. This came as a big shock to me and my family and was obviously upsetting.
I’m not going to go into too much detail because I’m not that good at explaining all the specifics; the disease is really complicated and there are a lot of factors involved. I’ve started a new medication that has shown success in targeting the cancer cells and will begin outpatient chemo tomorrow. I will be going this week and then after a few weeks have another cycle; probably a few cycles total. If it all goes smoothly, I won’t have to be in the hospital at all during this time. :)
There is a good possibility that I will follow up this treatment with another stem cell transplant, but that is at least a few months down the road…
We are optimistic and hopeful as I know I am in good hands at City of Hope. On Wednesday I met an elderly woman who went through the same situation and is in full remission now.
Thanks for everyone’s love and support!
ps. An unexpected upside to this is that I don’t have to be on my low-bacteria diet and I got to eat at In-N-Out! (eastcoasters, see below for reference)
I haven’t been feeling too well the past few days so today when I came in to the outpatient clinic we went straight to the ETC (kind of an emergency area here). Got my usual blood draws and three painful attempts to draw blood from my arm before my doctor said it wasn’t necessary. Seems like I have a stomach bug and possibly some signs of GVH so I’m here for a few days for a tune up. Finally just got admitted to a room in the hospital after spending most of the day waiting. Bummed out to be back here but they say it’s very common for people to come back at least once or twice post transplant.
A couple days ago I finished this bad boy.
This past Monday I had a bone marrow aspiration (similar to biopsy but thinner needle). Unfortunately I opted for no propofol this time. :/
I received the results a few days ago and my marrow looks good and healthy and 99.5% of the stem cells are my brother’s! This is really good news and totally sci-fi crazy!
My energy has been a bit up and down, partially to a natural dip of my red blood cell count. Apart from that, not much to report, just trying to finish a gnarly puzzle (thanks Lisa!) of Seurat’s A Sunday on La Grande Jatte and starting some drawing and painting with new supplies from my team at work. :)
I just changed my tumblr theme because I got really sick of looking at the other one. Mainly the too-narrow text column without enough leading (line spacing). Guess I’m still a little ocd about type. This one is ok for now although dang the type looks kind of big, no?
I’m out! So now what? I thought I’d explain what’s next post-transplant to answer some questions and clear up some misunderstandings.
I wish I was out of the woods but the next few months I have to take a lot of precautions. It takes 6 months to a year before my bone marrow is functioning fully and able to produce all the white blood cells, red blood cells, and platelets I need.
I have a 100 day post-transplant period that is extremely crucial for me to be careful during. I will be staying with my family during that time and returning to the hospital outpatient clinic twice a week to monitor my blood. Luckily we live relatively close to the hospital…other patients stay in housing onsite during this period if they are from far away.
The biggest things I need to watch out for over the next few months is GVHD (Graft vs Host Disease) and getting an infection.
GVHD occurs after a stem cell/bone marrow transplant when the donor cells attack the recipient’s cells. Acute GVHD happens within the first 3 months after transplant; chronic GVHD usually starts more than 3 months after transplant and can last a long time.
There are a lot of symptoms I have to look out for that could be signs I am developing GVHD. I take two medications that help prevent it; they work by suppressing my body’s immune system– which ironically, puts me at great risk for infection.
I’ve been told several times that I should think of myself as a newborn baby- susceptible to getting sick and needing to be coddled (Ok, I made that last part up). I even have to get all my immunizations in a year. So if you have chicken pox stay the hell away from me!
During the 100 days period:
Gotta keep our house super clean, remove all plants inside, wash my hands obsessively, avoid anyone sick, and stick to my “low bacteria diet”.
No raw vegetables, only a few fruits allowed, honey (unless anyone can find pasteurized honey- I will love you forever!). Cheese only when cooked. Spices too. Obviously no sushi. Pretty much no outside food unless its packaged.
Oh and almost forgot a couple biggies. Wear a mask every time I leave the house and if I have more than a couple people over.
Stay out of the sun for a year. (long sleeved shirt, sunscreen, big ass hat)
Anyways, that’s all I can think of for now. It still beats being in a hospital, so I am grateful.
