suitcaseI think I am writing that correctly. They consider infusion day (transplant day) to be Day 1, so all the chemo and treatment leading up to it are on countdown days.

Of course leading up to today, we had to hit another bump in the road. We wanted to leave on Tuesday, so that we wouldn’t feel rushed on Wednesday when we were actually supposed to report to the hospital. Well, on Monday night it started to snow, and snow, and snow. Forecasters were predicting up to 10 inches, so of course we were starting to panic. We live at the bottom of the hill and our street is always the last to be plowed. If there was any accumulation of snow, there was no way of getting out. So Mark took my car and parked it up the street at the top of the hill. That did the trick. No hills to climb, just cautious driving until we hit the paved streets.

Once we got to St. Louis we went to our little rental house and moved in. Well, I moved in and put MJ’s bags by the door. ūüôā

Wednesday it was time to get started on all the hospital stuff. First off was blood tests. Only 7 vials of blood, not to bad this time. Then they had to put his central line in. Also know as a port or catheter. Specifically it is a Triple Lumen Trifusion port. For anyone that is totally in the dark, it is a semi-permanent IV that goes directly into his chest. ¬†It is much more efficient way of giving medications than the traditional, in the arm, IV. Unfortunately they do it as a surgical procedure, so I didn’t get to watch. Double unfortunately, the sucker hurts. He’s getting extra pain meds, until his body adjusts to the rude invasion of this port and it doesn’t hurt so bad.

Good news was that his platelet count was just above the required amount for a transfusion, so we were able to skip that procedure.

Getting settled in

Getting settled in

We got into the hospital room. It is nice and big, as far as hospital rooms go. It’s still a hospital room though.

At 9pm they started the chemo. They gave him a shit-load of other drugs that I couldn’t even begin to list. Anti-nausea, anti-seizure, anti-this, and anti-that. If I can remember right, he gets 16 rounds of this chemo drug every 6 hours. Then they switch to a different chemo drug. I am sure as the days go by I will get a better grasp of what is taking place. Or I won’t. But the chemo goes for 8 days…

He feels better than he expected, but not as good as he hoped. He wants a shower, but we have to wait for the nurse. Seems like we do a lot of waiting…

So here we sit now… contemplating what to have for lunch. I probably should go try to find the cafeteria. And I should try to get some work done.

We are overwhelmed by the generosity of people that have already donated through the Give Forward site. And how we can say thank you, although that is so inadequate to how we are feeling.

Honestly, Mark truly believes in the energy that flows through and around us. And so all your positive energy, vibes, thoughts, prayers, and pixie-dust is as important to his success as everything else we are doing.

Mahalo, Terri

images-1Today we are in St. Louis, getting ready for Mark to have labs and a platelet transfusion, so that at 2pm they can place a “Central Line” into an artery next to his heart. This is a sterile line that pops out of his chest, so they can give him chemo, painkillers, and other drugs. It will also be how they inject (infuse) the new donor stem cells into his body. More on that to come…

Jeff Loibl, my brother has generously volunteered his time and energy to coordinating any and all support we may need. He has established two sites for us, CaringBridge for people to volunteer their time and to help coordinate events. Please see the “Quick Note” and the Ask Jeff page for details.

He has also established a site for donations, at GiveForward. Our primary goal right now is to pay for the insurance premiums and the “Almost Home” rental that Mark and I will be staying at while we are in St. Louis.

Today, we want to thank Linda and Lyle Mason who donated money to deep clean the rugs of our Columbia home just before Mark comes home. We want to thank Joe Gagnon and his family for their generous donation that will help pay for our insurance premiums for March. We want to thank Carol Newton for her generous gift card that will begin the donation campaign to help pay for the Almost Home rental.

Thank you for your generosity and support, prayers and good vibes, and pixie dust!

-Terri and Mark

coasterWow… so here I am sitting on the bed in our “Almost Home” place. The wait of the past four days has been a roller coaster ride. Playing hookie with the kids and spending time with them before we left was really, really good. It was a high that I will not forget. The amount of love that was shared in our home was stellar. As for the lows, they were not important and I just don’t care to remember them.

The next twenty days will be like that. Some highs and some lows. Terri will be with me the first night, I start my first dose of busulfan at 9pm. Hell of a time to start chemo and I get that every 6 hours for 16 doses. I can think of other kinds of doses I would rather have, but this is what I got. This is followed up by¬†Cyclophosphamide for half a dozen doses, to kill off anything left and hopefully not me in the process. This is unlikely cuz I’m in no mood for dying. These are probably going to be the lows, and I will be happy to forget them…

Friday will be a high, because Caitie and Kai are coming for a visit. They will get to see “Not Home” and “Almost Home”. It will be good for them to see the nurses and doctors are taking good care of me, and good for me to help me go through what has to be. There will be others. I know a few friends are coming to visit and that is always a good time to be had.

So send your prayer, love and good vibes my way, ūüėČ oh and pixie dust too. It does help make a low into a high. It is something doctors cannot measure on their instruments, but it exists and it is good. Thank you for your support. I love you all!

~ Mark

calendar…about Caring Bridge. It is an calendar/organizer where “events” will be set up that you can volunteer for. Two things, you have to register (create an account) with Caring Bridge. Then there is a spot under “Tasks”on the right where you “join planner”. At that point you have not committed to anything, just joined the community. As soon as we figure out what our needs, “events”, are, you will see a calendar on this page with items you can choose from if you wish to do so.

Also of note: If you make a donation on this site, you are donating to the organization of Caring Bridge. The money does not go to us.

~Terri

21. February 2013 · 3 comments · Categories: Stuff to do · Tags:

We all know what chemo does to you. So why not make the most of it. As a young ‘un, I went through phases as we all do. Hippie, punker, (cough) professional. Through all of these phases, I’ve always liked my hair.¬†Vane as that is.¬†I really hate the “professional” look, and once I land a job I let my hair grow out.¬† I’m a redhead and damn proud of it.

IMG_0143

When I hit 30ish it started to go white… heredity, my mom did as well… at least I was not going bald. As I said, I like long hair, so those punker days with short hair were short lived. I tried a “mohawk” then, but it was pathetic. I couldn’t shave my head… that would just feel wrong.

Knowing a month ago I was going to once I began chemo, I had to do something DIFFERENT.

When we told our kids I was going to become bald for a while, it shocked them, but I lightened the blow by telling them we would have a shaving party and give me a mohawk. This time I was going to shave my head. I totally empathize with women going through chemo. I just don’t want my hair to come out in chunks. I’m sure all my fellow males are shaking their heads. But most of you are bald anyway… so shut up! LMAO. Anyway…

IMG_0165Kai thought it was a cool idea, he has long hair too (that is UNUSUAL in the midwest, he’s in 4th grade). When it came time to shave my head he kinda backed away. Bummer… I think it is becoming real to him, Terri has other opinions. Caitie joined in as our videographer. She helped me spike my hair. It was fun for her. I’m really glad, cuz this has been hard on her. She understands.

So we are going to make the mohawk really fun, spike it right… add some colors… We’ll add links as the week goes along.

You can view several more pictures from this day on my Flickr account.

On Saturday we took it up a notch… See the Flickr set Punked.

 

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.

Atom-Bomb-Explosion-1080p-Desktop-Wallpaper

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.

more tests

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

 

 

As Mark and the family gear up for the 27 Feb procedure, we’re setting up a calendar where you can volunteer to help with various activities: from giving Terri or my parents a break to playing laser tag with Mark. Okay, maybe not so much the latter. But you get the idea.

The page will be going live in a week or so through CaringBridge.com where we’ll outline all the things you can help out with.

To prep for this, we’re asking anyone and everyone to please sign-up today at:

http://supportplanner.caringbridge.org/planners/helpingmark

Once you do, you’ll be able to volunteer for the activities once we create the calendar. But if you can do it now, it’ll save you a lot of time in the near future. Please also check out the Ask Jeff page for future updates and announcements.

As always, the entire family thanks you in advance!

-Jefflogo-caringbridge-large

Hourglass_Sand_Timers_Wallpaper_c04v5Some of this is a ramble, be forewarned.

Yesterday, the nurse coordinator called and told us that our donor accepted and could we send in our paperwork now. It’s 3:30pm! Overnight it, she says, cuz the insurance company won’t pay without hardcopies. No donor, no transplant. I’m happy for a second, my donor came through.

Then complete terror hits in… I have to be in St. Louis on Feb 27th!!! to begin chemo and my 30 day stint. Denial is a wonderful thing. That date just shattered it. I have three weeks to do everything! Three weeks is not enough time to do half of the stuff I think I have to do.

But the silver lining is that I only have to wait three weeks. I’m not the type of person that likes to wait around, give me a task and I jump right in and do it. Most of the time ūüėõ . Just sitting around and dwelling on what may happen is not my thing.

Now that may sound odd, because seven years ago they said you need to do this now. That was in Seattle and they have one of the highest success rates in world. At that time (which is chronicled in our early blog, Just Flowing Along), I said, “ahhh No… I need to get in the best health I can get in.” The doctor shook his head and said “That won’t help”. Most of these guys have blinders on, like you see on a horse. There is only one way. I sort of digress, but its an important lesson.

In the past 7 years I learned Tiaji, Qigong, meditation, to eat organic whole foods, all the tools that I need to get through this. And I lived an extra 7 years. Thank God, the doctor at Siteman in St. Louis said let’s watch it, you’re in good health. Did I choose to wait… yes. Did I dwell a bit… yes. Did I DO something to help heal myself… Damn straight!

In that time they have gotten a lot better at doing stem cell transplants. Survival for me went from 20% to now 30 – 40%. And I have 7 years of practicing Chinese (complementary) medicine. I learned that Chinese medicine is an unlikely cure for MDS, but no doubt it extended my life. And I know I will survive this.

So the countdown finally begins… today I am comfortable with that.

-Markput_this_on_calendar_clip_art-285x300

 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

images

– Mark