In the frequent down-time of waiting on calls or treatments or next steps or whatever I have been reading back through all of the love and encouragement from all of you and would like to thank you all for working hard to carry us through this time. You have blessed us greatly and honestly I could not imagine this crazy journey without each and every one of you. There is a long road ahead but that road will be a bit easier on us because of you.

 

Reading through my own meagre contributions as well as Wendy's candid sharing of our struggles I feel an obligation to tell a bit of 'the rest of the story'. I set 2 primary goals from the start but in over-emphasizing #2 a big part of the picture (some of my struggles) is missing. So what were those goals? -

 

1) Wendy has shared with you the #1 goal I set immediately after the call when my N.P. told me what was going on, to do all I/we can do to Beat Leukemia, and that still holds. True confessions: during my angry phase I kinda anthromoproged ..... um, androgynated ..... uh, OK, I imagined Leukemia as a person and imagined that my real aim was to cause that person to cringe whenever they heard the name Howard. Yeah, weird things happen late at night when you're angry, scared, and borderline delirious from sleeplessnes. Really angry. 

 

2) As my #2 goal I set out to be an encouragement as much as possible to you, to caregivers, and anyone else along the journey. My thoughts continually go back to those who cared for me and who care for others facing Leukemia and other cancers. Just imagine working daily with people just like me who are scared, angry, hurting, weak, some of whom will not recover. They are certainly in need of and deserving of any encouragement we can muster for them.

 

As I reflect on the things I've shared here I came to realize that there are some things that need to be shared for those who have gone through similar crises as well as those, God forbid, who may yet face such an experience. What I want to convey is that if you've been through something similar, we understand now more than ever what you've been through. If you face such a thing in the future, know that we've been there and, Lord willing, plan on coming through to the other side and will be here knowing some of what you face and understanding that the path is not easy. We'll be there for you. We have been fortunate, this was caught early and so far things have gone well overall but not without a glitch or two and I don't want anyone wondering why it was so hard for them yet so easy for me. I just make it sound easier  :-). Some things perhaps that need to come to light:

 

There was the first bone marrow biopsy story. They asked if a trainee could try first, I said sure why not? After a bit she says "I'm sorry, I'm afraid I'm gonna break him.". Doc takes over and after a few minutes I hear him grunt then he pumps in more anesthetic and apologizes. In the end the normal 15 minute procedure took over an hour and left both Doc and me dripping in sweat and gasping for air. Three bent needles to find out my bones are like reinforced concrete, no osteoporosis in my future! We do wonder, however, what specialty the trainee may have chosen when realizing this might not be the best choice. I do feel bad for that .....

 

There were the 10 days between diagnosis and Hospital admittance when there were so many uncertainties and I was told not to do ANY of the things that relax me, that I enjoy. No dirt, not sharp things, nothing rusty, nothing strenuous. Limited contact (wait, didn't we just get done with that?) and no public appearances.

 

Why did nobody tell me this? In Hospital they want to know everything that goes INTO your body as well as everything that comes OUT of your body. Pure indignity. Was probably 3 or 4 the last time I had to do daily poo reports yet here we are, back to toddlerhood. But I was a good boy, most days.

 

After 3 days in Hospital I decided that Leukemia had taken enough and that I wouldn't let the treatment take my hair so in probably an angry reaction I asked a kind nurse, Jim, to shave it off so Leukemia couldn't have it. I was born with a full head of hair so this was a genuine first.

 

Do NOT get a fever while in Hospital  unless insomnia is something you enjoy. They woke me every couple hours to get vitals for a couple nights in a row until I finally said ENOUGH!! and told them to let me sleep and recover. Not a moment I'm so very proud of but it was effective.

 

STIR CRAZY!! Bad enough in normal times but in COVID generation the lock-down is mentally crippling, worse when over 3 hours from home. Limited visitors, limited visiting time, and very little allowed real-estate to wander. And no dirt or chain saws?? Incarceration really stinks.

 

And then one morning the beard and 'stache started breaking down. The hair on top was already gone, now this. Bits and pieces fell off a little at a time all day until that evening when a big chunk fell off. There might have been a primal yell. There might have been some nurses spooked, going door to door trying to find out what was wrong and who. I almost didn't admit who done it but then recalled goal #2 and fessed up. Sigh. Time for some more shaver action ..... 

 

The rash. In the end it covered from ear lobes down to my toes. No itching or pain but once again the nurses were required to check on it hour after hour as it progressed. Just another Hospital indignity and another reason for insomnia.

 

Chemo taste buds- for almost 2 weeks everything tasted like wax yet everyone insists that you keep eating. The Hospital food was bland enough to begin with, this was worse.  Even today there is a lingering after-taste from the chemo that only disappears when I eat or drink something with flavor.

 

Chemo brain is real! They say chemo can mess with your mind and the treatment process just as much and that is no lie. If I did not have Wendy along of sound mind there is no way I could wade through all the complexities alone as my brain began having serious processing issues near the end of my chemo week. If you tell me a 10 step process I might be able to recall 4-5 of those steps and for sure they will be in the wrong order when I do recall 'em. Add sub-steps and I'm done. Seriously, don't believe anything I say for the foreseeable future. Well, with the exception of that stuff above, and then only because Wendy reviewed it. 

 

Life goes on. We arrived home to a house with no power, a reminder that normal is not ever what you imagine it to be. We survived, the power came back, life goes on. And for a couple weeks I could do most of the stuff I love to do but in an insane twist of insanity my brain keeps telling me "remember, you're not supposed to do that!" whenever I want to do something. Chemo brain? Regression to toddlerhood? Behavioral conditioning? Maybe just lingering incarceration depression, who knows. 

 

There are a lot of things I could add about insurance issues but I'll simply say they've managed to make a difficult time much harder. Trying to navigate through it has felt like a full-time job some days but so far we've been able to muddle through.

 

Well, I think the point has been made or maybe even beaten to death. We DO feel fortunate and we HAVE managed better than it could have been even with the struggles. We have used humor, most often, to cope with our stresses but also know that we have cried and been anxious, too.  God has watched over us and He sent Wendy to guide and protect me but He also sent all of you as encouragement, cheer leaders, and supporters which has been key in holding us up when we were ready to collapse.  Thank you all. And if you need an understanding ear, we've got 4 between us!!