For Starters

There is no obligation… no guilt trip… to help us out. Please only help us if you really want to.

Mental Health Day task

If you are willing, and able for a Terri mental health day is to offer to check in on the kids and me when Terri is at a local hotel or no further than Kansas City. All that is involved is to be available just in case I get a spontaneous illness with a fever above 101.5 degrees. If that was to occur, then I would need to go to the emergency room and have you call Terri to pick up and be with the kids. We don’t want to leave them alone under those circumstances. We’ve done this twice before and it went over smoothly, if you can call such a thing. We would give you a couple of weekend dates and you can choose what works for you. If Terri does not go on her scheduled break, then you are free. This is what we need the most. One weekend a month, a different person each month. I hope that clarifies this task.

Help with lawn and Garage

The lawn is done… the trees could use some trimming so they do not rub against the roof, that is pretty much all we needed for the yard. The Garage just needs to be straightened up and a small bit of organization. With a couple/few people it would be done in a couple of hours. We promise to feed you, and provide drinks for you. Plus we could catch up.

Social Contact… being alone sucks!

Truly, all I need is someone to talk to via email. I really can’t talk as most of you already know because of my vocal cord polyps. I am the same person you knew before, aside from being bald, which I hate, but that is life. No need to shy away… I have no plans on dying, I have too much to live for. I still think pretty well even through all the meds and chemo. I’d rather email than FB because FB warned me that I was improperly using the IM feature and they would cut me off. So screw FB! Soon Physical Therapy will make me strong enough to go out to lunch for those of you in Columbia, otherwise its still an email. I really tried to IM a couple people who are good friends, but I cannot be online all day to chat. Perhaps it is self-centered of me, but I’m being realistic about my limitations. I think that covers it… I hope the clarifications help.

Thank you all very much… for those sharing positive vibes, prayers, pixie dust and knocks on wood. They do give me strength to carry on and fight through the complications.

~ Mark

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.)

River-FlowThe Past

Well, its Day 156 or Sunday, August 11th 2013, whichever you prefer. Terri and I know we have not updated the blog in quite some time. We apologize for that, but life got in the way. The stream seemed to hit some rapids and time flew by, while it was for us at times a long bumpy ride. We also don’t want to account for every little thing that happens during this journey. Some details are important, some are not. But here is a summary of what has been going on.

The last time we posted I had just been diagnosed with CMV, we caught it early and they prescribed the best treatment (which was IV Ganciclovir. They had a nurse come out and taught Terri and I how to infuse it. And then came by every MWF to draw blood and check up on me. It takes an hour to infuse and for me the side effects were upset stomach and nausea, and fatigue. Nothing I had not dealt with before. Terri began working full-time and the kids and I mostly stayed home. We entertained ourselves the best we could and I attempted to walk around the cul-de-sac with Caitie. There were, of course good days and bad days and none of it was fun, but the end result was that my last blood test showed that I was negative for CMV. So catching it early and being proactive worked. Now we monitor it and wait and see.

The Present

Saw most of my doctors during this time and everything was status quo for the most part. They dropped my Prednisone down from 30 to 25mg/day and are planning to do it again this week. So far the GVHD has not come raging back but my gut aches, like a headache you would take tylenol for. My Doc seemed to think that was ok for now. They took labs once again and scheduled my next bone marrow biopsy for Aug. 14. My platelet count is still bouncing between 20 and 30,000 and we’re on a wait and see treatment plan for that.

I also had a cold sore (or Herpes simplex virus [HSV] – type 1, so they took a sample of that. That sounds like a minor thing and I assumed so too, we’ve all had cold sores before. For you that cold sore is no problem, for me it actually is a problem. My Doc and the medical team did not seem concerned before so why should I be.When I started to get mouth sores and a slight sore throat, I looked it up. Apparently that was a wise choice it, because that lab sample came back positive.. The med team in St Louis did not look over the results of the test. If I did not start feeling crappy (and this was three days after my CMV treatment ended) and looked up my lab reports this could have been bad. A lesson learned and I’m passing it on to you. You have to be your own advocate. Perhaps, this was a case of let’s wait and see, but NP Stephanie did not even know it came back positive!!! and we should treat it. Don’t wait for your doctor(s) to call you, look at your medical records and learn everything you can about every lab result. The internet is a great tool.

Although its not common, in transplant patients if it goes to your lungs, and apparently it does travel through the body, it can get ugly and the mortality rate is pretty high. So I now have contracted four illnesses (three viruses and who knows what that spiked my temp) in two months without any breaks. You can probably imagine I’m pretty worn out by this, my body has not had a chance to recover. So I’m on a bigger does of my regular antiviral, Valacyclovir. The side effects are not pleasant and I feel like crap all day long now. Fortunately, I only have to take it 7 – 10 days, I’m on day 3.

The Future

And again, its like starting all over again, the time when I got out of the hospital after my transplant. It’s been a rough two months. I’m certain the viruses make me feel like crap, but add on top of that the meds and their side effects. I know this all sounds negative, but we (and esp. for me) have not lost that positive spirit. There is too much to live for and I know in the end I will be well. I need to focus on my heath and build up my strength. I have now realized that for most stem cell transplant patients its a long ride, and it looks like I’m in a similar boat. I’m learning to let it go, cuz its the only way to flow.

If anything exciting happens we’ll let you know. And we won’t get the results of the BM biopsy until Aug 29th. So expect an update a couple of days later.

(terri-Yep, it’s been a bumpy ride lately. We are waiting to catch a break. Right now, our flow is a stream with plenty of rocks. But, this stream is flowing to a beautiful lake or into the peaceful ocean. I still know, deep in my soul, that this is part of the journey and we will all come through it stronger and healthier. Now to help Mark re-find his zen…)

~ Mark and Terri

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16. February 2013 · Comments Off on Cancer Treatments · Categories: Uncategorized

This is a very ANGRY post. But I hope you will learn something from it, and do something about it.

For the past 70 or so years doctors have been using chemotherapy and radiation to “fight” cancer. Doctors back then were well intentioned. They needed a way to kill cancer cells. But its been 70 years since doctors first used a chemical that was originally used in WWI, called Mustard Gas. Yeah, that chemical warfare shit! Not a whole lot has changed, the chemicals have, but the therapy has not. Radiation treatment is really no different. This is insane.

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I will use a couple of analogies to make my point. In my treatment, they are using two chemo drugs that will kill off the cancer cells and every growing cell in my body. And it damages most of the organs in my body. That is like using an atomic bomb to kill off the overpopulation of deer. Not only does it kill the deer, but every living thing in the radius of the bomb blast. Tell me that is not overkill. Some newer chemo drugs do seek out and target proteins that are found on some cancer cells, but these chemicals are no different than using smart bombs. They are not really all that much better. They are still injecting a highly toxic chemical in your body.

Now they have had 70 years to work on this fight. We spent a lot of money and focused energy from some very bright people to build the atomic bomb, and did it in about 4 years. Every single one of you know at least someone, probably several, that have had cancer and almost all have had chemo. Some lived, some died. And the word cancer still scares us, it is still in our brains as a death sentence. Why?!

I know research doctors are doing their “best”, that they care about their patients and family members who are dying of cancer. I’m sorry but I do not believe pharmaceutical companies do care about the patients… they care about profits. And if you are a president of a pharmaceutical company, let’s sit down and chat. Convince me that I am wrong. But beware, I am not a fool and I am damn good at research.

The pharmaceutical industry is no different than the education system. Everyone wants to help children learn. Parents do, teachers do, even administrators think they do. But administrators think of test scores and budgets and politics, and they loose focus on what is really important… the kids! Don’t get me started on the politicians who claim to put education first, but then where do the first budget cuts strike?

Just like teachers finding better ways to teach the same old thing, medical researchers are doing the same. Both have blinders on. Several years ago AAAS, a leading science education and research institute believed it would take 76 years (the duration of Halley’s Comet to circle around the solar system) to actually change the way science teachers teach science; from the traditional method (reading facts out of a textbook, to using inquiry-based pedagogy in the classroom). You see I’m a science educator and general educational researcher. Medical researchers are still trying to make a better chemo drug, which of course makes pharmaceutical companies happy, because they won’t loose their grip on their profits.

Its time to make Cancer a priority. It’s time to think outside the box and find new ways to kill cancer cells, perhaps stem cells are a beginning to the answer. But we as a world need to address this growing problem. 70 years of the same old shit is not acceptable. Let’s focus on our loved ones, let’s tell politicians and the medical industry to find the way to cure Cancer. Yes, we will have to spend money, but in the long run we not only save the lives of your family and friends, but billions of dollars each year treating people like me with outdated stupid cures. 70 years!!! They built the bomb in four!

~ Mark

 

So… remember I said things never go as planned. That is now an axiom.

What nowMonday and Tuesday of this week were set aside for a whole lot of pre-tranplant tests in St. Louis. It’s a two hour drive from Columbia to St. Louis. We leave just on time… we’ve made this run before… a lot! About 45 minutes from our destination we get a flat… shit! Our first appointment is at 10:30 am. If we were roadies at the Indy 500, we would have jobs. Which is amazing and the power of motivation (because they are running a buttload of tests so I can have my transplant on the 27th. AND since I had spent the weekend in the hospital, again not what I had planned. A fever is an automatic trip to the hospital, again I caught a bug from one of my little loves and a staph infection. No we did not make it on time, but 5 minutes late is A OK at the hospital.

My first test is (and I have no idea what any of these tests are called) measures my heart. They inject two substances in you (lol… when they can actually find the vein), the first is a binding agent. This chemical binds to your red blood cells and some other substance… in this case a radioactive isotope. Then they scan you. There is no noise, just a big plate they move 3 times at different angles, each scan is 10 minutes long (its boring). Somehow, it records the flow of blood through your heart and measures the muscles of it as well. Why? Well… because intensive chemo damages your heart, and every organ in your body. But you have to have a baseline, so they can tell how much they fucked you up during those 8 days of chemo. Pardon my colorful language.

Afterwards, I am suppose to get a chest x-ray (didn’t I just have one, or two, or three the last few months) and an EKG. Had one of those too, more than once. In fact, in order to get pre-approved to get a transplant, they do most of these tests to see if you are healthy enough to qualify. But that was three months ago, so they don’t count. I am cynical, and think of the waste of money and why our insurance is so high. But at the same time, at least i know that my organs are in good shape… still.

The nurse coordinator tried her best to get all these tests packed in one day… lmfao. Nope. No way, we can do either test (x-ray or EKG) before I have labs and then see the doc. Plus, I was not even in their system to have either test done anyway. OK minor setback, we have to stay overnight anyway. The two “missing” tests can be done on Tuesday.

Labs… Medicine is still in the Middle Ages… they bleed you. I kid you not, they took 30+ tubes of blood out of me. I’m sure that each is for some important test, but they sure are not going to tell me there.

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The doctor visit… not even sure why we talked, he had nothing new to say (I really do like the guy), but the nurse coordinator we did need to talk too. I said I was in the hospital the weekend before. And the staph infection, gotten… somewhere (lol… in the hospital) and we needed to make sure there was a plan of action to kill that bugger off. Best news… she knew I was in the hospital and had a staph infection. They are looking after me. I feel safe!

Bone Marrow Biopsy… I really hate pain. I have really hard bones. It really hurts. Some people don’t even need drugs to do one, except topical numbing meds. I get some Ativan, which makes you relaxed, and a 50cc injection of Demerol which barely numbs me; They refuse to give me more, without an anesthesiologist, which they won’t do (or the insurance wont pay for)…

ssshhhh… I take a couple extra of my own pain killers before. I know that is not wise, what if something should happen? But 6 months ago I did it with just their drugs and I finally screamed at the guy to just fucking get it done cus he was pissing me off it hurt so bad. I’m not nice when I’m angry, in pain, and only just a little bit looped. This was not the first time either. Like I said, I have really hard bones. You might not feel a thing, I hope not. Some people sail through this. But this guy was good, fast and checked to see if I was in pain, every minute. I hope I get him again. Between what i took and what they gave me, I cannot recall what happened until we got to the hotel. I can live with that.

The next day we get up early to do the tests we could not fit in the day before (i.e. x-ray & EKG), then off to do a bone density test. No big deal… no drugs, just lie there and they take a low-level x-ray of your bones. Again, baseline… no point in going into why.

Then we drive to what we hope will call home for our stay in St Louis. A series of duplexes called “Almost Home” [rentals]. (As opposed to just, Almost Home, which is for teen mothers and children; both are in St. Louis.). Anyway, this place is 2 miles from the hospital, the woman (Toni) rents almost exclusively to transplant patients and their families. She is totally awesome. We are crossing our fingers!

And that is how we spent Lincoln’s Birthday, and the next day too.

– Mark & Terri

 

 

 Disappointment

Before I begin this post, I just want to say, one of the purposes of this site is to give other people who are facing a stem cell transplant some background to what it is like. Lesson 1, Things do not go as planned.

Yesterday, Terri and I started to talk about the transplant schedule, where she and then I would stay during the procedure. I would be in the hospital for 30 days (more or less depending on how things go), but she still needed a place to unwind and have a real bed to sleep in. After my stint in isolation we both need a place to stay for another 30 days (more or less… ). We finally got the package from the hospital’s social worker and were looking at our lodging options. It occurred to us that we did not have from the doctor a firm date for the transplant. So Terri calls up our Nurse Coordinator to see what is up, after all, I’ve taken care of the things I needed to do and now its time to go for it.

Why you may ask do we not have a firm date? Because it depends on the donor. I’m really lucky, I have three “perfect” matches. What is a perfect match? Well on the outside of your cells you have these proteins, that are called human leukocyte antigens. And the immune system looks at these antigens to determine you from not you. When looking for a donor they like to have 5 matched pairs of antigens, also known as a 10 out of 10 match. To learn more visit Cancer.org’s short webpage, Allogeneic transplant: The importance of a matched donor.

Our best option was a young male donor, and a 10 out of 10 match. We were ELATED! Our other two 10 out of 10 matches are female. Why would a male be a better match? Primarily, because I’m male, yep its that Y chromosome thing. Apparently, research says there is a statistical difference in overall survival when you transplant female stem cells into males.

Why disappointed? Well… our perfect match male donor backed out at the last minute. I can’t help feeling a certain amount of disappointment, but I am still very, very fortunate. All one can say is, “Oh well” and move on. So we (really the transplant center) is moving on to the next donor on our list. We’ll never meet these people, but we thank them from the bottom of our hearts. Because they give us hope.

Why Hope? Because I have a chance to survive. Without a donor and a stem cell transplant I would die. That much is certain. I have two more individuals who are out there, giving me hope that I will see my children grow up. Hope is a beautiful thing!   Be the Match

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– Mark