Under normal circumstances I probably would keep some of this to myself, but I keep getting emails from people who are going through similar experiences. Their encouragement motivates me to share some of the more personal aspects of this journey.
The Dr and nursing staff here have become more then a little concerned about how withdrawn I have been during this treatment. I even get visits from the mental health folks here every couple of days. Now, I have no problem visiting with a psychiatrist every now and then. During my transplant and recovery, I found it useful. In this case, I'm not sure what exactly they expect we're going to accomplish. I was asked if I have any short-term and long-term goals. Something about being asked about my "long-term" goals just rubbed me the wrong way.
I need to provide some details before I go deeper into this... So I'll recap the events of this October. This is going to end up being a long post.
October 1 - I was asked to attend a meeting at work about a "new opportunity". Without going into a lot of detail, I learned I was being considered for a new position. In sort, it was the perfect position for my creativity and experience. The job I always wanted. I was ecstatic.
October 2nd - During a routine checkup at Mayo, I find out I have diverticulitis (intestinal infection). No messing around. 3 days in Rochester Methodist hospital. I was assured this wasn't necessarily related to my transplant. I very much disliked being back in a hospital. Mayo food is horrible.
October 4th - Out of hospital, back to Sioux Falls in time for Becca's benefit downtown. Becca is a fellow AMLer. Great to finally meet her and her family. I even won a fishing trip to Washington on the silent auction . I've never been to the NW part of the US and Dad & I have been talking about visiting Uncle Cliff in Seattle anyway. This trip will be a lot of fun. Really looking forward to it.
October 6th - Travis and Michelle's wedding. A fun day and evening with Andy and friends. It had been a long time since we had been able to get out like that. Andy & I even managed to jitterbug for a song. I've still got it... Still on meds from the infection so missed out on the open bar. Wonderful time and I annihilated those diet cokes.
About this time I'd been putting feelers out about a getaway the weekend after Thanksgiving. Fishing in the gulf, Vegas, a football game somewhere... Pheasant hunting was a week away and I decided it was time to buy my first shotgun instead of using one of the old man's. I was now semi-automatic and ready to rock. Andy and I also decided we were going to surprise the kids with a Disney trip right after Christmas. Picture Layla running around the house with a tape measure asking if she is tall enough to go yet.
If you couldn't tell I was ready to move beyond this transplant and AML. Work was falling in place perfectly and I was determined to catch up on some of the living I missed over these last 2 years. So begins the "new normal" and all was good... (begin ominous music)...
Mid week my stomach still wasn't right. No pain from the diverticulitis, but I had no appetite. My meals were getting smaller and smaller and my energy level was going with it. Suspecting that it was my graft vs host in my stomach, we raised my meds to compensate. I like self medicating.
Friday the 12th, I get called to a meeting at work which I thought was about the new position and getting that whole opportunity under way. Now, when I think about the things that define me as a person it mainly comes back to my family and my work. I'm probably not unique in that way. I've spent 11 years with my current employer and I've enjoyed every minute of it. I enjoy the work, the people and the things we create. I am proud of the work we've done and my part in it. I've had nothing but stellar reviews and have enjoyed a lot of friendships with coworkers and customers alike. To wrap up this part of the story, this meeting was nothing like I thought it would be. Details omitted, but long story short, I'm told the general consensus is I am hard to work with and I am on now on a short leash. This blindsided me and I can honestly say I took this harder then the day my Dr. told me I had cancer. The weekend was miserable (Andy can concur) mainly due to this, but my stomach/energy issues were lingering.
Monday came along and it was time for my weekly blood tests. Tests done, off to work and ready to move forward. Resolved in the fact that I just had one more challenge to overcome. Haven't eaten a decent meal for a few days and wondered why I didn't get a call about my blood tests. No news is good news and it's not the first time they didn't bother to call. Moving on with the week.
Wednesday the 17th. Kids & Andy are at choir. I home because I was late returning from work. Phone rings at 7:30. "Hi Jon. This is Dr. Dirabi..." Oh shit... I let Andy put the kids to bed before I told her that I had relapsed again.
Thursday the 18. Bone marrow biopsy. Not eating. No energy. Told the kids the cancer was back.
Oct 20th. Pheasant opener. Not eating. No energy. Nothing was going to make me miss the pheasant opener even if I had to crawl. It about came to that. Caught up with the group at about 2:00. Blocking and driving truck. The new gun works, but couldn't make after hunt festivities, not even the annual church supper. Crawled into a chair and that was it for the rest of the weekend.
October 23rd. Admitted back into Sanford Hospital. GI scope turns up no graft vs host. It turns out stomach issues are caused by the heavy antibiotics they gave me because of the diverticulitis. Well, I lost 15 pounds anyway. I have a UT Infection. They have to treat that before they start chemo.
So there are the events leading up to my current round of treatment. Remember though, I started this whole story because I was withdrawn and I evidently need some "long-term" goals.
Let's see...Two years of chemo, transplants and more time away from family then with... for what?
Current Prospect: Repeating rounds of induction or maintenance chemo every 3-4 weeks with no real finish line. Constant fear of infections, organ failure or that these cytotoxic drugs finally scramble my DNA so much I contract all known types of cancer simultaneously.
Goals? I had goals...
New position at work... gave up my dream position
Travel plans with friends... Not going to happen
Disney with the kids... Not likely
Anniversary trip with Andy & friends... Nope
Fishing trip to Washington... How?When?
Yes, I am withdrawn. I've been doing this for 2 years now and this single month has had the biggest up and downs of anything during that time. Look at those plans/goals... those were just a few months out. Care to guess how I feel when I think about watching my kids play their first basketball game, graduate from school, get married...
So yes, I get a little agitated at the suggestion of setting goals from my mental health professional. I don't expect any of my doctors or caregivers to really understand what someone like myself is going through. An experience like this is deeply personal. Experiences and histories unique to every person. It would be helpful if there were more of an emphasis on the metal\emotional side of treating significant illnesses like mine. But that needs to start with understanding the person before jumping right into whatever standard questions\approaches one would generally take.
The mental health guy doesn't stick around very long any more. Maybe I am a little hard to work with.
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