Well, I haven't been on here in a while, but lately I have been feeling the need to reach out to others and see if you all have experienced anything similar to this.
For a quick recap, I am 20 years old, a survivor of Hodgkin's disease and my boyfriend is currently fighting Desmoplastic Small Round Cell Tumors. In March of this year, we found out that my boyfriend had "relapsed." I use the term loosely because in hindsight his cancer had clearly never been gone in the first place. The news of the "relapse" was hard to take; he had been out of treatment just 6 months and was finally starting to feel like himself again. I felt like I couldn't do it all over again. His doctor was very concerned, and began talking to doctors at MD Anderson in Houston. They decided that the very agressive treatment plan available only at MD Anderson would be his best hope to beat this thing. So, in June he went to Texas to have the procedure done. They would cut him open from his diaphragm to the base of his pelvis, cut out all the visible tumors and then pump his belly full of heated chemo drugs, let it slosh around for a while, and the close him back up. From the scans they did just days before his surgery, they expected to remove about 100 tumors, which to me sounded like a lot, but given that they usually have to remove 400-500, they seemed confident that this would be a routine, easy procedure with few complications.
And then I got the call from his mother. There were too many tumors. They couldn't do the treatment. My dad and I hit the road for Houston and got there as soon as we could. After reviewing his case, the doctors beleived that if he chose to, they could go back in and remove the rest of the tumors and do the treatment. This option they said would probably give him 5 years. The other option, not pursuing another surgery, not doing the treatment, would give him one year. The decision wasn't so simple though. The second surgery involved removing many important organs-- his spleen, gallbladder, parts of his large and small intestines, possibly his ureters, vas deferens or other structures. He would need a colostomy, which may or may not be permanent. I never thought at 19 I would be helping my boyfriend make such important decisions. Decisions for his future, for our future together.
He ended up deciding to have the second surgery. In total, they removed close to 5000 tumors. And finally, by the end of August he could return home. He wanted more than anything to return to college, and 4 days after returing home, he did just that. But he could hardly walk, he had no energy, and he was so weak and thin. Since we attended school together, 2 and a half hours away from home, his care fell on my shoulders, and it was overwhelming. Three weeks into school he had to return to Texas for radiation treatments. During his treatments, he got even sicker and decided to drop out of school for the semester.
But the tough part continued. Our relationship has been under endless pressure. He doesn't have the energy to put into our relationship, which I understand. But I just don't know how much longer I can endure this. He has withdrawn from all his relationships. He hardly talks to me, and he talks to his other friends and family even less. He doesn't do anything but sit around or sleep. He has no apetite, no drive to do anything at all. He won't even hug me anymore. And when I look into his eyes, all I see is clouded over emptiness. He is no longer physically sick, but you can tell he just feels bad. And of course, he maintains that he is fine. He says he is not depressed but I know that he is, and that is a normal reaction to everything he has been through.
But how do I deal with it all? What can I do to make him snap out of this and see that I love him, that I would do anything for him? Have other people experienced this social withdrawal?