On August 29, 2016 Cancer became part of my past. My last infusion (on that day) marked the shift from being a cancer patient to a former cancer patient and, good lord willing, cancer will stay in my past and never be part of my ‘present’ ever again! On August 29 I entered the remission phase. No more monthly 2 hour early morning drives to Columbus for infusions. No more crazy infusion day socks. No more toasted pb&j made by a wonderful volunteer. No more white wrist bands with my info on it. No more shuffling around the unit with IV pole in tow looking for familiar faces to visit with… The end has come and a new normal gets sorted out.
I will miss all the great nurses, patients and volunteer’s that we have met over this past year. We came in on that first day full of nerves and fear of the unknown. We expected to find a negative vibe hanging over a unit full of sickly people fighting for their life; we found it to be very much the opposite! It’s been one of the nicest places I hated to have to visit!
In one big way, I am ecstatic to be saying good bye to that place, but in another, there is the sadness of missing the friends we made. Sure, I’ll be going back there for checkups, but it will be in another part of the hospital. I won’t be spending all day there either. I may have to stop in and say hi (and get a toasted pb&j J) but eventually I will no longer need to go there and life will go on.
I won’t miss the envelope fat with 8 or 9 itemized pages of bills that comes in the mail. All the medical terminology that we’ve learned this past year or so almost makes me feel as though I had taken a college course. I guess, in a way, it was kind of like a ‘crash course’ in ‘Cancer 101’. I still say that I learned more about life this past year than anything else. Human nature would most likely have been my major. I see the stages people go through when diagnosed with cancer or any other serious life threatening event. I read their stories on facebook or first-hand face to face. I recognize all the different levels of denial and then, ultimately, acceptance.
I am always happy to help and people often do turn to me or Heather with cancer questions. So as I enter the remission phase, I am eager to learn more and pass what I learn along to others. I recognize this as one of my purposes in life right now, so I embrace it.
My wife has a whole different perspective. For her role as primary caregiver, she has had the unenviable position in the passenger seat while I went through severe reactions to my first infusion. She sat, helpless, only being able to provide a comforting touch and words of encouragement (which did help greatly). She has been my rock, the most positive person I know, keeping her cool pretty well when all hell seemed to be breaking loose! I would never have wanted our roles to be reversed. I’m not sure I could’ve been as solid for her.
So as we wrap things up, she has her own set of worries and questions about the future….
Everything Peter said… 🙂
2 weeks ago Peter had his last infusion. Our plan was to get a new blog out prior to the BIG day… but to be honest, it’s been a bit of a struggle for me. It’s really exciting coming to the end of this clinical trial. Peter did it!! What a celebration!!!! There were for sure some really rough patches, especially this winter when he was having a reaction to one of the drugs. Today his blood work looks great!! His doctor feels he is in a remission!!! The other night we were comparing his blood work from last summer to his most recent… unbelievable!!! At the beginning of this trial there were so many what ifs, it was REALLY scary!! A trial means that really, nobody knows a whole lot about anything, every body is different. How brave!!! Every new step was a step forward in faith while also in remembrance of Steve who had only passed months before. Peter was so clear in his head when he chose this trial because he knew that the past treatments not only had a low percentage survival rate, but there were so many possible complications. I stood with him 100%…. but this is so real. Several times in the past year I had to cheer him on to keep going; there has been a HUGE battle happening inside his body. Bad malignant cells being killed, Peters body working 24/7 to get rid of the toxic cancerous waste. Once the drug that caused his awful side effects was taken out of the equation he did much better, still utter cancerous exhaustion (which if you talk with any patient or survivor, they will tell you it is an exhaustion that can’t be put into words or compared with anything else).. but marked improvement. Though he didn’t have any form of chemo for his treatment, he does have some “chemo brain” like side effects. There are still days where he can’t pull himself together, but they seem much less frequent now. No matter what anyone says; cancer breaks you in every way imaginable… mentally, physically, financially. BUT…Hoooray!!! He’s done!!! Wait… are you sure? No really.. for reals?? From my care taking perspective there is a whole new set of worries. He’s responded so great, but we’ve been told there isn’t a complete cure for his CLL. Eventually his numbers will climb into the bad zone again, he may or may not become symptomatic, and then we are back to square one.. again. The clinical trial drug will be off the table next time, because he’s already used it. This means something new, another possible terrifying for us both drug reaction to a new infusion drug. It happened so fast, so severe… I put on a brave face for Peter… but it was ‘I can’t breathe’ terrifying feeling so helpless. In those moments I truly feared I was going to lose him… and I couldn’t breathe. I understand that his body may have “adapted” to this particular drug, it may not work again, yet I wish he could just “tune up” with the infusion he has been on every couple months. I guess that is not an option. His Dr says there is a tool box with new tools arriving all the time for the fight on CLL. Will we always have to fight this monster?? Seriously?!?! We only just found each other, we just wanted to live a life full of adventure, cameras, laughter & lots of love for the next 50 years. I suppose some might grimace and throw in the towel… but that isn’t us.!!! OK, so adventure it is.. just not quite what we imagined, cameras check, laughter oh yes check, love, every day more than we could imagine in a whole lifetime, and every day more love and respect for this beautiful husband of mine!!! Even with all the love and positive energy; some days… life is just heavy. Peter has mentioned here in these blogs about levels of acceptance along the way, this part is no different. Each new level starts out scary, or frustrating, or numbing, and then eventually we each find our way to acceptance. This is just how it is now. Sometimes we just need to shut out the world and just hold on to each other so tightly, and simply catch our breath. We will know more in about 6 weeks. He will have all of his clinical trial exit tests at the end of this month. CT scans, bone marrow tests, more in depth blood work, all so as his Dr says they can “stage him”. A cold hard slap in the face.. stage him. Is this cancer still lurking in his body waiting to strike again? Good Lord to be able to simply breathe knowing it’s gone… but reality say’s it’s not completely gone. To have faith, and hold on to hope becomes a full time job that requires constant prayer, meditation, walks, and talks with Peter. His perspectives are truly beautiful and I am so humbled to know and love this man. There is nothing in the world I wouldn’t do for him. So we celebrate this completion… and search for peace at the same time. I told Peter’s doctor on the day we met him, we spent this lifetime without each other, we have just found each other, we just got married a few months ago, please give us 50 years, because even that isn’t enough. He promised to give it all he could to give us 50 years.. and I am holding onto that!!!