Talking About a Transplant

2013-10-05 11.07.27Steven and I have been talking a LOT about our future, since we now have a long one ahead of us!  This transplant has really given us a different outlook on everything. Most importantly, we’ve again been reminded that we are a great team and always have been.  For those of you who are new to the blog, the shorthand version of our story started when I answered an ad in the newspaper for a receptionist’s job for Steven’s business.  I cast my spell on him, got the job, got the big desk, got the checkbook, got the presidency and got the ring within a year.  I don’t screw around when I see something good…wait, what?  I guess that’s not true…LOL,,,I did get the ring!  Nevertheless, we started out our relationship working together, and then working together and living together and the bottom line is that we really like being together and are really good at it no matter how many hours a day we are lucky enough to steal.

IMG_1228Steven gets weekly calls from one of the transplant nurses from our insurance company.  She’s quite nice and since she was assigned to our case at the onset, she’s followed every aspect of treatment and has been very helpful and encouraging throughout this journey.  The reason I mention her is because during her last conversation with Steven, she asked him if we were still speaking to one another.  We were both perplexed by this until she explained that most couples run into a very bumpy period once they have to spend 24/7 with one another.  Quite frankly, neither one of us can imagine that.  We really love, love, love being together.  Which is why we’re trying figure out some way that we could use this experience to set up a situation where we could work as a team again…once Steven can stay awake for 8 hours straight!

One of the most obvious directions to me would be to give presentations (serious commodecomedy shows?) on the the patient and caregiver sides of the BMT adventure.  I think it would be a huge service to patients, caregivers, extended family, hospital workers and even peripheral medical support staff to hear from both of us.  Steven would be speaking from the guinea pig side and me as the smart-ass side kick caregiver.  It would be awesome!  More importantly, it would be real.  And since we’ve learned soooooo much during the past few months, it would be a crime not to share it.  Especially because all of it comes from first hand life experience that’s not in any book, pamphlet or web site.  Luckily I’ve been documenting snippets of it through this blog, leaving us with a written reminder of how things really were so we won’t ever forget Chemo Room 6-18-15or re-write it in the cobwebs of our memory banks. Honestly, I think that is something that is very hard to find out there in Cancerland.

I had the opportunity to speak with a BMT transplant patient who had his procedure 10 years ago.  He tried his best to recount the experience, but I’m fully convinced that it’s just like childbirth.  You just can’t remember exactly how bad it felt after it’s over because you’re just so damn glad you did it!  That patient, Jim, gave me his story and his recollection, but he made it sound like no big deal and I knew that couldn’t be possible.  It did make me feel better about going in to the transplant, but because I was pretty sure it lacked a LOT of the real details, I was always looking around for pitfalls that I knew had to be ahead.  That was rather exhausting and a huge drain of energy.  I think in retrospect it would have been easier to just know what was going to be the pitfall and approximately when it was going to happen and then to just coast until it arrived!

Steven’s take on this right now is that he’s having a hard time talking to potential BMT2012-07-14 16.48.42 patients because the memory of all the bad stuff is so clear.  He says he doesn’t want to talk to people about it, but I know what he really means is that he doesn’t want to talk other patents OUT OF it.  I think he’s afraid to talk about it because he just can’t put a good spin on it.  I think he doesn’t have to.  I think it would have been great to have someone like him telling us that it was going to suck…but just for 30- 45 days.  Seriously, who couldn’t go through “suck” for 45 days if they knew a long life was to follow?  And Bee Tee Dubs, no one just goes into a stem cell transplant cold.  All the patients have had some sort of chemo, sometimes a LOT of chemo, first.  So there are really no big surprises on the degree of SUCK here.  Patients are already familiar with the drill.  They just need someone to lay it all out for them.  Show them the ins and outs without under or overplaying it.  How great would it be to be able to give a little presentation and be honest about this transplant and still be encouraging…and maybe a little funny?  I think it’s not only doable but a real service to the cancer community.

Alexis & MickeyThink about this…you’re in love with the man of your dreams.  You’ve got a few glasses of wine in you and things are getting hot and heavy with no birth control in sight.  You’ve been told that what you’re about to do might result in you passing a watermelon through your hoo-haa in 9 months.  Do you stop?  Yeah!  Me neither.  I’m just going to relax and go for it knowing that I have 9 months of coasting until that one day of IT SUCKS!!!  And then you have a sore hoo-haa for a bit and a great new baby!  And that’s how Bone Marrow Transplant should be presented.  What do you think?  Am I on to something?

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widgetTHIS IS IT! WE’RE WALLOWING AT THE HOME STRETCH! Unfortunately, we don’t know when Steven will be able to be 100% self sufficient to be left to his own devices.  Until that happens, I’ll be taking assorted days off from work…without pay. It’s getting tight around here! We’d appreciate any help you can give us!