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Rachel's Cancer Blog

Spring Blahg

I’m not gone, just haven’t felt inspired to write in… how long has it been? Sorry if I made anyone wonder. The last time I wrote I was looking into a clinical trial in New York. Terry and I had a nice vacation to New York (yeah, filled with doctor appointments), saw some friends, and got to imagine what life would be like in the concrete city. Luckily, it worked out that my good docs in St. Louis managed to get me on the same drug at home. I say worked out, because the drug didn’t work. I'd have lost my house and my insurance for nothing. For the last year or so, I’ve been unsuccessfully treated by several different treatments. It seemed like each one would make me feel better, but then scans would reveal that the damned thing had disappeared in one spot and popped up in another. Very frustrating, but maybe you know that sentiment already. Hey, there’s a spot of light to this story, folks, dry your eyes! I was permitted to get on SGN-35 (it has a real name now- close to FDA approval!) which knocked down the Hodgkin’s without wrecking my system. It has about an 80% success rate, for you lymphoma sufferers, so watch out for this drug! It works with antibodies, treating the disease under the idea that it’s caused by a virus (ever had Mono anyone? I‘m guessing at what the virus is… don‘t quote me on that). It’s not a permanent solution, and is best combined with radiation, or a stem cell transplant, maybe both. Well, it worked for me. The doctors were able to shrink the Hodgkin’s down and I received a donor transplant for my birthday present this year. I spent the month of January in the hospital. It was toughest the first week because I felt good, I wasn’t sure how I would stay sane for a month in those walls. There was a bar within view of my window. The nurses told me that the first week temptation had been too much for some past patients and they had been spotted escaping from the hospital, wheeling their IV’s down the road to get a beer- I did NOT partake! I received two different chemotherapies, the duration of which lasted for a week. The first chemo was easy, the second was pretty excruciating. The actual transplant, though exciting, lasted a whole 20 minutes and felt like nothing at all. Three weeks of watching my blood counts fall and then rise, and then I was free. I woke up on February 1st in my own bed, animals around me, and my faithful Terry, who has been my rock through all the kafuffle. I’ve been home for a month now. I lost a lot of weight from the transplant process- more the chemos messing with my system than Graft Versus Host disease. I had a perfect “10-out-of-10” donor, so I may not have to experience the wrath of GVH. Other than some dehydration, everything’s going as planned, it seems. My cells have switched from my own, old bone marrow cells to the new donor cells. I still have problems wrapping my brain around that one. Science is so cool. I’ve had lab tests every week, which will slow down over the next few months. I haven’t had the follow-up scans yet to show if the Hodgkin’s is gone yet. I feel good now; I can’t even make myself feel worried. It’s been a long time since I’ve felt this sort of freedom from illness, and I'm enjoying it. Spring is coming, that’s all I’m concerned with right now.
Jill, Louise threw a punch at your cancer.
3 people sent you a prayer.
3 people sent you a hug.
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Wow sounds like you have had an adventure. I am so glad you are feeling better, how cool to only concern yourself with spring, I am doing the same. When to plant tomatoes, etc... AWESOME Blahg
Sorry, went a little over board with the punch, prayer, hug thing. But I wanted to do all three. Girl you have had a tough couple months. I am so glad you are feeling better. This new treatment is working!! it is! Positive happy thoughts coming your way. Big Hug too.
Great Blahg! Happy Spring, Rachel. Your health will bloom alongside the St. Louis crocus and daffodil this year!
Hey there, a very nice blagh! Will we see you soon? We miss you and Terry!
Is it any wonder I think of my girls so often in the garden? Love, Mom
Rachel you sure have been through the ringer. I hope you are feeling a lot better. Your zest for life is catching as we all want SPRING in our lives. It's kind of depressing all this grey cloud, rain and snow. I'm glad you are focusing on the best season of them all. I hope you will get some relief of having to have your blood tested so much. I guess that goes with the territory after the procedure. You make me smile with your upbeat attitude.
Happy Belated Birthday!!! Just got my computer up and running. Hope you had a great one.
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about new york...

Hey, don't know what happened, but if anyone else was having problems reading "New York or Bust," it's back up and running. It's about my new treatment plan, my doctor, and my new city! I hope you'll try to read it again Thanks for your patience, glad I could fix it. -Rachel
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Vital Info


March 17, 2009

St. Louis, Missouri

January 4, 1985

Cancer Survivor

Cancer Info

Hodgkins Lymphoma

August, 2008

Stage 4


How hard it is to get rid of.

Your close ones are affected and changed, too, for better or worse.

Good thoughts and prayers and any general pointers from native New Yorkers

I'm taking a slew of herbal supplements, my new expreriment.

After successful radiation to the chest, doctors' found it had metastasized to my abdominal lymph nodes.

Most notably, I was itching horribly, and I lost 25+ lbs. Also, I wasn't sleeping and had vivid nightmares and night sweats when I did. I had a lumpy neck, fatigue, a cough that lasted for months, and finally, my left lung had collapsed (which lead to the diagnosis).

Received 5 weeks of localized radiation to the chest

Trying to shrink tumors down to nil before going ahead with stem cell transplant. I now will be needing an outside donor transplant.

Lenalidomide- Generally well tolerated



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