"I am not a Pollyanna." Joseph McGuirk

I'm sorry for the long dry spell of news. I've been trying to get organized a little bit and figure out next steps.


I spend most of every day at the clinic getting supplements (blood, platelets, potassium) and have been coming home with overnight packs of more fluids. Since the second round of chemo ended Sunday I feel pretty lousy most of the time and have had trouble keeping any food down at all.


Yesterday I met with a pain management doctor (palliative care) who I met with in the hospital last summer. She came up with a couple of creative ideas that have reduced the vomiting considerably. So I am more comformtable than I have been.


Today, Dr. McGuirk stopped by my little pod at the clinic and we had a one on one conversation. He opened with "I am not a Polyanna. I have to tell people they're going to die frequently in this practice over the last 20 years." He also predicted that I will feel worse before I feel better after this second round of chemo. For about 5-10 days. Hopefully I will not experience all the uneasy options, but I guess it's likely I might have one or two more than I do now. I can't imagine anything worse than the nausea and vomiting but my mind has kind of shut down much of the pain and symptoms from last summer.


Anyway, the upshot of our conversation is that he thinks it's possible to get me a couple more years on this earth, always reminding me that I am in charge. Right now the track is set until we reach the point of deciding whether to do a T-cell booster from my brother. Some other things have to fit into place between now and then (PET scan, bone marrow biopsy) but that is the next non-passive decision.


A T-cell booster, if successful, will cause more graft v. host disease. It will also be a long shot to hit the little window of success that McGuirk believes exists because the biology of my leukemia has been very different than any other he's worked with. My personal reaction is I may not want to live two more years like the last two. Isolation, pain, nausea, vomiting, midnight runs to the hospital, etc. No matter what McGuirk believes and hopes. There is a quality of life question here to be considered.


So I am setting in motion the actions to wrap up my life. Things to leave for my grandkids, nieces and nephews. Sorting out my business, which if you are a customer, I will be contacting you with some options in the next 10 days to 2 weeks.


Chloromas are terminal. Sooner or later. There is something about the science of the cells needing to be able to move in and out of the lymphatic system. And repeat transplants make the cells stickier and stickier so they don't move easily. They get stuck and they create chloromas.


I welcome your comments as always here. Love your cards. I'm interested in ideas and plans for this end of life stuff. Feel free to call and schedule a visit. I'm open to talking about all of it, crying about it, laughing about it.


My sisters, brother, and cousins and parents have been steady sentinels for me over the last weeks. Conor and Annie and Mark visited last weekend with the grandbabies while I was still feeling relatively sane if not "healthy." This Saturday we are having a blowout family gathering in my backyard, moved from its previous destination of the park. I am fortunate to have a huge backyard, overlooked by a huge deck (which I built myself!)


~Cathi

Editor's Note (Conor here)
Mom asked me to review this post and I wanted to leave what she'd written in tact as they're her words and there's nothing I want more than for her to 'own' the rest of her earthly time.

That being said, I want to add that McGuirk said there's a 'glimmer' of hope she could make it through this. Yes, it's < 1% but it's a glimmer. The only things we know definitively are what Mom alluded to above as well as the fact she is completely done with chemo. There's no reason we would do another round, which is welcomed news after who knows how many rounds the past 2+ years.

The way I've been explaining it the past week is that on 7.12.08 (the morning after her initial diagnosis), we sat in her hospital room and said 'ok, if you don't make it through this, this is what happens.' And we agreed to put the negativity aside and focus on surviving - never discussing again what would happen if she didn't make it. Now we do need to acknowledge that negative option is 99%+. So we make plans accordingly and enjoy the time we have.

This isn't the first nor last time I'll say this, but I want to let everyone know we, as a family, appreciate the tremendous support we've received since 7.11.08. It's been an amazing feeling getting everyone's emails, cards, phone calls, Facebook posts, and visits / caretaking. And as a son I cannot express how proud I am of the fight mom's put up. She's always been strong, but this ordeal has made it that strength even more apparent. I thank God daily for such an amazing mom to learn from and befriend. And I'm more than sure that everyone reading this would agree.