I had hoped to reply sooner than this. It’s been a very busy and difficult two weeks for me and the Gagnon family in CoMo. My Mom is doing better (that is relative), but there are good days and bad days. If you have gone through what my Mom and I have, then you understand. If not, I hope you never have to. Mom I love you and your courage!

black_and_white_doctor_with_a_clipboard_talking_0521-1005-1111-0212_SMUMy doctors in St. Louis decided to put me back on the IGG-IV (guess I’ve been spelling that wrong) for another six months. I think this is a very positive treatment option, since my platelet counts had went up into the 60’s (that’s 60, 000 – with the normal range being 150K as a low to 400k – 500K as the high) but have been steadily declining as of late. Platelets jump up and down as they ride the waves of your veins, so the difference between 30 or 40K is big at my levels, they are not a danger sign. (Now imagine for those old enough to have seen the original “Lost in Space”, and I’ll just stop now.) But you hit 20K and they start to give you transfusions. Mine have dropped again into the 30s over the past month. Not worried about it, because we have a clear treatment plan – IGG-IV.

So this last week…

Monday, (1/20 or Day 319), I spent 4 hours at the treatment center getting my first dose of IGG-IV. Yeaaaa! 😀 I slept through most of it, it was a rough 4 hours of sleep the night before. Prednisone and I have a love hate relationship. It keeps me alive, but only getting 4 to 5 hours of sleep (side effect) each night for 6 weeks is getting tough. Napping is a luxury, and the Gagnon family is surfing the same board and trying not to wipe out. Good days and bad days.

Tuesday, the most positive thing in my life is my family. Caitie turned 12 and I talked her into playing hooky with me. We played together, went to lunch and watched a movie. She is an amazing person, truly an amazing person; AND she is a “tween” with all of her own shit to deal with. I just hope I don’t scar her for life.

Wednesday, saw my ENT doctor, more & larger growths on my vocal cords. Time to start planning that surgery. Right now is NOT the time for surgery but getting my BMT Doc and my ENT doc to actually talk IS. Holistic medicine has a long way to go. One would think two specialists at the top of their fields (I never, ever go second rate), could communicate for 10 – 15 minutes and talk about helping ME survive. So I play the middleman. One second soapbox – WHY NOT!!!!! You’ll see why the middleman is a bad idea in a minute. Just not my wave.

Thursday, Terri and I drive out to St. Louis, a small reprieve, but I’ll take anything at this point, and so will Terri. Exhaustion can be a positive, we found the hotel before dark, found a place to eat. My first venture in fast food. Two Taco Bell Bean Burritos. No sauce, or cheese; just beans and a tortilla. Sorry My Love, I have no idea what you got. We ate, and went to bed. Terri got some deserved sleep, not enough, but enough to get her and me through the day.

(Note from Terri-They scheduled 4 procedures in St. Louis for Mark on Friday, the first being at 7am. We didn’t think waking up at 4:30 and driving to St. Louis was a good idea; hence going the day before and getting a hotel room. What 4 procedures you ask? Blood draws (the usual), platelet infusion (not the usual), port/catheter/central line placement (definitely not the usual- if you remember from the last post, one of the valves on his previous catheter had cracked [Bad thing!] and the whole thing had to be replaced), and a bone marrow biopsy (semi-usual thing). Did you follow all that?)

Friday, wake around 3am – damn Prednisone – and zone out. Sleep – HAHAHAHA! We have to get up at 5:30 anyway to make my first appointment at 7am. Labs. Its been almost a year since I had to have blood taken from my arm. Wow, that’s a lot of tubes. Across the hall is where they will be giving me platelets. 30K is not enough, 50K is the minimum for surgery. Except at 8am my medical team decides NOT to go ahead with the “port” as previously discussed. I’m getting a new catheter, instead. HAHAHA!

(Again from Terri – I can not possibly explain the difference between a port and a catheter, except that a port sits under the skin and a catheter does not. If you need more clarification, click on the links above and you can read up on it.)

They ask, “Is that OK with you?” How the hell would I know! And the Jeopardy song plays on. Except I have no buzzer, no information, no way to tell what is a good or bad choice. Plus, they just gave me Benedryl and it’s kicking in. I went for the catheter, because at least I know what it is. So now they are busy discussing the amount of platelets needed to do the catheter placement. Well, Terri and I have been here before, we’ve surfed this sandbar a dozen times. Everything is off schedule, but putting in a new catheter pushed us another hour behind.

(Terri again-actually it was the platelets that pushed us behind schedule. The lovely lady who scheduled out day for us only allowed 1 hour for the platelet infusion. Let me tell you how this works. They type you (blood type, they have to match), then they order the platelets from the hospital blood bank. It is not like you see on TV where they get them to you STAT! Then they give you Benedryl and Tylenol, to counter any adverse reactions. FYI-Benedryl makes Mark very sleepy. When you finally get the platelets, they start the infusion with a very slow drip… just to make sure you aren’t going to have an allergic reaction or something… take all your vital signs… and then finally give them to you at a normal rate. This does NOT all happen in one hour. So now we are 1 and 1/2 hours late to getting the catheter placed. They were unfazed by us being late and gave Mark good drugs so that he has no recollection of the procedure. Next is off to get the Bone Marrow Biopsy. Onward!)

Then we met Barb, who goes by the book to do my BM Biopsy. She told us what she was going to do, how she plans to do the procedure, and I said, “No you aren’t. Not to be rude, but I have special instructions written into my file. You need to follow those.” I’ve done this dozens of times and I know my body and how it reacts to different methods. Barb, of course becomes unglued, and she will have to call to have the procedure orders changed. Plus, I’m still looped from surgery. Another hour ticks by, which is OK because we’ve been there so many times we know their names. That was a positive, because it cooled down Barb, we reintroduced ourselves, she had her new orders and she was pretty good. Efficient, at the very least.

(I’m back – So while we are trying to get the “orders” straightened out-the standard procedure vs. Mark’s protocol- they have NP Stephanie from the BMT office on the phone. Stephanie wants to talk to me. So I am standing in the hallway between the nurses’ station and the room they have Mark in, phone in hand, relaying the discussion between me, Stephanie, and Mark to make sure we are all on the same page and understand what is going to take place. I swear I could not make this stuff up!)

Now Saturday, Sunday, AND Monday are a blur. Pain killers work real well, but I don’t remember a lot. I don’t do Morphine, it makes me puke; however, there are many others that work just as well, if not better (at least for me). It wasn’t just having a BM Biopsy, it was also placing a new catheter. Today is Tuesday, I hurt like I should, just when I move quickly or someone tries to give me a big hug. Today, no pain killers so far, and its almost dinner time. Knock on wood that goes well, becuase, yes, there are still stomach issues. Caitie just gave me a good comforting hug, and so did Kai. With Terri, Caitie & Kai my soul is complete. With and because of all of you, it’s icing on the cake.

One last thought, life over the last year has taught me that everything can flow with you or you can try to force it. My life (and perhaps my Mom’s) are here before your eyes. Tomorrow could be a good day or a bad day. Finding a positive moment during a bad day can give you what you need to ride that wave through. It takes effort to find that moment (and there are days where you just don’t find it – I’m not delusional). But when it happens.

~ Mark

bad days(Final thoughts from Terri – What I am getting from this experience is that every patient is different and responds to a transplant differently. There is no standard treatment. They can’t really tell you what to expect or how long some certain complication is going to last. The best they can do is say, “Yep, that’s normal (we have had experience with that)” and then start trying out different treatment plans. Because naturally since everyone responds differently to the transplant, everyone is going to respond to treatment differently. There is not standard, cookie-cutter way to go about this. You have to take everything as it comes, the good, the bad, and the ugly [and trust me, we have had all three], deal with it and move on. You may have known or heard of people that have gone through a bone marrow transplant, or even had MDS. Don’t assume that our case is the same as theirs. Because it isn’t, they are all different. And although, we are taking things as they come and dealing with it [Trying our damnnedest to Go with the Flow] this is the hardest thing we have ever done and no one can tell us what to expect tomorrow, next week, next month, next year… damn that got real negative. Sorry, that wasn’t my point, and now I have forgot my point. But I think what I said is important to keep in mind, so I am going to leave it there. Mark and I are leaning on each other and drawing strength from everyone that is keeping a warm spot for us in your hearts. When things get hard, we tell each other that this is temporary and it WILL get better.  Much love, and thanks for hanging in there with us.)

The Flow

I’ve always been a big picture kind of person, I like to know the past and present, so I can see the likely outcome of the future. I can do detail stuff too, after all you need that basic knowledge to see the big picture. But it is not something I need to focus on. This applies to work, life, and right now my health. And right now I am in detail mode, cuz things did not go according to my plan. I was supposed to be healthy now. Some things you just cannot control, or choose to ignore. I hope I do not distort the “Flow” as I try to explain this, but I can control most of my body actions and my mind (…most of the time), that is the detail mode, where you have to be in the present and focused. It’s the “some things” you cannot control that cause the most challenges, because of how you perceive and interpret the world. Experience plays a big part of seeing the big picture. It’s why some old people are wise, they have seen a lot in their lives, and focused on the details when it was important to.

Kelly-Slater-barrel-ridingGreat surfers are like that… yes, back to the surfing analogy… Knowing the ocean, reef, weather, etc is part of the big picture, as is wave selection. Will the wave wall up or crumble in front of you? Will the foam ball push you out with the spit or eat you up? All big picture decisions. (Please do not misconstrue that I have ever been barreled before, but I watch a lot of surfing). The detail is in your body movements (too many to describe here). But the point is that the control you do have is a big part of the Flow. Will dragging your hand slow you just the right amount to ride the wave through?

Choosing the Right Wave

The last two months have not been fun. As I said before GVHD sucks. We (my doctor and medical team and myself) have changed meds, added a couple, and I have learned to be very careful about what I eat. I have a plan of action that I can choose to use. Pain and nausea meds work, but fuck you up. There was a time that would have been OK… not now. Wednesday, we went to see NP Stephanie. It was a good conversation, because big picture-wise I can see what my doctor and medical team are trying to do. It’s been a while since that has been the case.

Back to Wednesday, what (of course) was a routine visit of 2 hours became a whole day. And scheduled a not so minor surgery for Jan. 24th, as well as a BM Biopsy to see what is going on in the old bones. Because although we have my GVHD “under control” (right?!). But my platelet count has once again dropped from the mid 60s to the mid 30s. I’m not worried, I don’t think my Doc and medical team are worried… last biopsy I had 100% donor cells. But chromosome 7 mutations are a bitch to get rid of. We’ll find out a lot when we see my Doc on Feb. 3rd, and discuss the results of the biopsy. We have a couple of paths to choose from and I need to research them carefully. Unfortunately, this is a case where it is a matter of life, and/or the quality of my life for the next few years.

Note from Terri:

We have yet to have a normal, “get in and get out” doctor’s appointment. They all seem to turn into an all day affair. Each appointment runs longer than anyone expects and no one is on time. So Mark’s pulmonary function test went long and ran into his lab (blood work) appointment. The lab appointment started late and ran long because they noticed an issue with one of the valves on his chest catheter. So we get to the actual medical appointment with Stephanie late. I guess no worries, she is running late too. She sat down with us and we were able to have a nice long conversation (which is a good thing). She looked at Mark’s catheter and said it needed to be removed, that they couldn’t just “fix” the broken valve. So when we were done with her we went down to Intervention Radiology to have the catheter removed. So where we should have left St. Louis by 1pm, we actually left at 4pm. And that seems to be the way it usually goes. For the biopsy day appointment, it has different appointments scheduled for the entire day beginning at 7am. Maybe we will get out of there by midnight. It’s blood tests, platelet infusion, port or catheter replaced, biopsy. Party in St, Louis if anyone wants to join us. Mark and I decided a few weeks ago, that sometimes you just have to laugh at what life throws at you. Because what else are you going to do? It’s not always easy. But we try.

Update on the Present

So in a very related way, I mentioned a few months back my Mom has leukemia (ALL), at 73 she has chosen not to go down the chemo path (can you blame her?), and tried out a steroid approach. Steroids are a temporary solution (I know from personal experience, as well as the research I have done). Although I cannot go to California to be with her, I know she had a wonderful Thanksgiving, Birthday, and Christmas. She chose wisely, IMHO. She saw those waves on the horizon, selected the perfect wave and rode it magnificently. Her cancer has since spread and the family waits, holds her hand, and gives her the love she needs.

mother and sonMom, I love you and am there with you in spirit if not physically.

Aloha makuahine.

~ Mark