What is normal?

My partner has Hodgkin's, for the THIRD time...she is 32. Instead of following along her career path and establishing herself professionally, she is facing a donor stem cell transplant...and we have been trying to get her in remission for almost a year so that she is in the best possible place when we take her to transplant. And transplant is not walk in the park. We are going to Dana Farber and they gave us a book to read pre transplant...it is enough to scare us into not even having the transplant. Have any of you done the donor stem cell transplant? It is the only hope for a cure...and at the age of 32 of course we want a cure!!! I am trying to keep my full time job, which is stressful since I work in healthcare....she hasnt worked in almost a year, and we are both getting pretty exhausted. How do people do this long term? I am so tired and I don't even feel we are at the hardest part yet, which is a year of worry and obsessive cleaning and food prep post transplant to manage symptoms, infections and trying to prevent GVH Disease. Any advice from any warriors out there?

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  • Hi psbhuff, welcome to Stupid Cancer.

    My partner (27) has a different blood cancer (leukemia), and just had a donor stem cell transplant this past October. I understand your fear. It's a very extreme procedure, and rare compared to other forms of anti-cancer treatments, and it's hard to find people to talk to about it who have been down that road.

    My biggest advice pre-transplant would be, don't get worked up over statistics. There are so many factors that will make them seem scarier than they are. If you start looking into the stats you will get yourself worried over numbers that have nothing to you with your partner, as a unique individual.

    As for home life, it's a big change, for sure. The way you live your life will change down to the smallest things, and at first it will seem like a great hurdle. But you will get used to it and it will become normal for you. It's a little like when your partner first got cancer-- before diagnosis, you couldn't have understood what this would entail, but after you get into it it becomes a fact of life. Transplant life is the same thing.

    IStem cell transplants have come a long, long way in the past 10 years, from the way we deal with food and bacteria to the way we are able to test donor matches more thoroughly than ever (and with the advent of cord blood donations, we can offer more matches). The outlook is better than than ever!

    If you have any questions or want to chat, feel free to post or message me.

    ps. I dunno about your situation, but... after the conditioning process for transplant, most likely your partner will lose all fertility. If your doctor hasn't discussed your options with you yet, you may want to ask.