i had my spleen removed last friday and they called me with the good news today. the hodgkin's is back. i don't know that it ever really went anywhere. i have been getting ct and pet scans for almost a year before they were finally able to cut something out and make a diagnosis.
so im going to do a hardcore dose of chemo followed by a bone marrow transplant. my bone marrow is fine mind you (a donor isn't needed ... they'll use my own), but the chemo is so intense that it will actually wipe out my bone marrow and it will need to be reintroduced.
i haven't told any of my family yet. i want them to enjoy their 4th before getting the news. however, it would have been a very very big surprise if it came back negative with every thing that has been happening (multiple swollen lymph nodes that have continued to grow over the year along with the erythema multiforme that put me in the hospital
back in december) so everyone fully knows what to expect. i think that some of them still have some hope though, so ill hold out until tuesday.
the point of this post wasn't to leach pity, but i am very curious to hear if anyone has had any family or friends go through a bone marrow transplant or anything similar. the treatment scares me way more than the disease itself. no one has heard me complain about this surgery or any other surgery that i have had. im not hardcore, i take my pain meds every four hours on the dot, but i can tolerate pain without being a complete bitch about it. i can't say the same for nausea though. i'm a complete pussy when it comes to nausea. the thought of dealing with the first day flue symptoms for 3 weeks to a month straight terrifies me. i have been through chemo before, but it wasn't nearly as intense and my stomach very rarely felt anything more than uneasy. this is going to be a lot different. i'm looking for any and all advice on the best anti-nausea drugs available. i will demand whatever it takes to get me through this without rocking back and forth moaning like a little girl for an entire fucking month straight.
i understand pot is great for this (completely annihilated any nausea i had during round 1) but this will not be an option for me this time around. the bmt will completely wipe out my immune system and i will be completely isolated the entire stay in the hospital. anything entering my room must first go through an airlock and be sanitized. any visitors will be dressed in full surgery garb and ingesting anything from outside the hospital will be impossible. not to mention that most people do not eat at all for about 3 weeks during the transplant.
if you know anyone who has been through this, or know any doctors who will give you advice as a friend and not a patient, i would really appreciate any recommendations.
i know a lot of you are going to want to say sorry to hear that man (those of you who aren't happy to hear it at least), but don't feel too bad for me. it sucks no doubt, but it's not like it came out of the blue. i have been dealing with the possibility for about a year and the certainty of it for about 6 months. the hardest part was hearing that it might be back or it probably is back, but we cant prove it so we cant treat it. i dealt with that shit for far too long. at least now something is being done about it and it's almost a relief. i still have a better chance of living than dying and even if it does kill me it's not a very fast moving disease. if they can do nothing for it i'd probably still get another 5 years. i'm not counting on seeing 50, but there's no way im dying before adora can understand and cope with something like that. i refuse to be responsible for a little girl being told her daddy's dead so i won't be dipping out for at least 8 to 10 years. anything after that is negotiable.
again ... im not fishing for sympathy. i sure as hell aint asking why me and i'm not afraid to die. infact i sometimes look forward to it, and if it wasn't for adora i probably wouldn't even bother with the treatment. i just want any and all help i can get on anything that will make the treatment easier.
in good news we are in the final stages of buying a 4 bedroom house with a huge fenced in yard for the dogs and ill not have to move a single god damned thing. one of the bedrooms is downstairs and has a connected bathroom which will be perfect for me to recover in. the basement is huge and has access to the yard so we'll be able to lock the dogs downstairs until my immune system is built back up a bit. this couldn't have happened at a better time and the house is perfect for the situation. i just hope that we can get moved in before i actually go in for the bmt so i can have a say in where the furniture goes.
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GDA!
