Denise, weirdly enough I am not feeling overwhlemed by this. I spent the busiest times as an inpatient as they took a few weeks to finally get a diagnosis. Luckily my insurance allowed me to stay in the hospital at this time which really cut back on worrying about taking care of my wounds, transportation, etc from home. At the time I was upset about  being in the hospital, as I was away from home for an entire month. The only overwhelming feelings come from all the insruance claims that are being denied for my emergency care up in Canada. It was on the flight to Canada that the symptoms of the large mass/collapsed lung began. I didn't know I had either of these when I left on the flight and all this resulted from the initial tests in Canada and 2 weeks in the hospital there. Now I have the bills to sort through!

I am not even sure I will have a BMT. But if I do, it will likely be auto (self).I haven't even had a consult about it, it's just seems like something I should do as a reoccurant patient and my oncologost recommended it. I am really looking forward to having the consult as I know I'll be dealing with great doctors at Stanford that will be able to answer a lot of my questions. I am sorta clueless how much the BMT will me since my bone marrow was never involved in either occurance of my hodgkin's.

Erin, I totally remember you and I bring you up to my husband as another example of "me". No offense... but I was relating to your situation. I actually remembered you only had 2 cycles of ICE so when my oncologist told me 4, i was thought that was a lot.. but then again, my mass was pretty huge. I am sorry you have some lit up areas in your pelvis. On one of my CT scans, an area looked possibly suspicious down by my spleen, but it didn't light up in  my PET scan, so we're waiting and seeing what it does in the scan I have around thanksgiving.

My thyroid was likely UNrelated to my hodgkin's. As it had already spread into my nodes, the specialist at UCSF estimated I'd had it for 3-5 years already. I also likely had the hodkin's for at least that long too. Not sure if they are related somehow, but the thyroid cancer wasn't a side effect from the radiation treatment i had last summer.

Just an update here---

I went for another round of chemo... I dont even know what it was called. It it known to  be tougher than ICE which I had just finished 4 cycles of. On monday i go to get my stem cells harvested and then the next monday I hopefully go in for my last chemo EVER (but may need 2 more). The chemos they have me on include the lots more of the "I" from ICE, as well as 1 or two others given over 4 days as an in patient. It's sad, but I've lost track of what they are pumping into me now. It really stopped mattering, as long as it works!

I didn't feel as exhausted with this chemo, but did have some stomach pains from stomach acid for a few days after I left the hospital.  It has been harder on my system as my WBC are crashing much lower than ever before (despite daily shots of neupagen) and I've even needed platelette transfusions. I go the the hostpial everyday for various things. It's a full time job. I hope my harvest goes well on Monday so i can stop my shots and avoid day after day and sitting for the harvest, and I'll be anxious to get the catheter out as well Im sure.

hi Erin,

You had an amazing harvest! I am jealous... I was told my goal was 7, though the doc said 4 was enough. It ended up taking 4 days... about 3.5 hours each day. Day 1 and day two I got over 1 million... day 3 i got over two. So I had reached my goal, but I harvested again yesterday to reach the optimal 7. I dont know what I collected yesterday, but I am sure I'll hear from my doctor soon. i actually at the hostpial again today for 2 units of blood. I can't seem to get out of this place! I dont mind this transfusion since they aren't going to give me lasix, I am sitting up  in a chair and I dont need the calcium they were giving me during the harvest. I hated that stuff, made me all hot and uncomfortable.

I go back in for more chemo on Monday. a 4 day regimen of Ifos, and some other I think is call gemsidobine, and another that starts with N. Since the ICE didnt "work" as well as it should of, I am on this other stuff which isnt really used here in the US much, but it is in Europe. In 3 weeks I will get scanned again and hopefully in remission or much closer to it.

Even though I know the transplant wont be fun, I am really looking forward to it. My doc is wanting to give me a double transplant, so after the first, do it again in 2-3 months. They got enough stem cells to do both, if insurance approves it

Amy