Day +6

well first I have to give a big hug and thanks to the Carroll's (Ashley and Tony) for getting me and Karlin all of Mad Men season two on dvd. You have no idea how perfect this is for us! We've been trying to catch up on season two for quite some time now. I promise that once I'm better we will hang out, it's almost comical how many times there have been events that I couldn't make it to because of all the appointments, etc.

Well they have me on a Morphine drip now which allows me to dose myself. This is to help with my throat soreness which has gotten really bad. I wasn't sure if I would be able to eat breakfast or even take my pills this morning. I hope they don't have to feed me through an iv, which they said is a possibility.

It's times like these in which I like to draw in my "comfort book". This is an example of how I felt on November 22nd.

Dos Photos!

Day +5

Well today has been pretty uneventful. My mouth continues to be sore in the throat and everywhere else really. This makes it hard to take pills and eat, obviously. Breakfast went down in a relatively successful manner though. They've given me some "magic mouthwash" which basically coats and numbs the throat and mouth. I also have to continually rinse with a saline solution. They don't like to mess around either though. This morning because the pain was too bad they gave me some morphine. Some combination of these items will be used to thwart off the mouth and throat doldrums. (I hope I used that word correctly, I like it)

Day +4

My dad went and got me some shirts. Big thanks to Harold for hooking us up on this one. Seriously, what a great guy you are Harold! Can't wait for the victory tee now!





well kind of a long waiting game now. My blood counts are coming down nicely, as they should. I just can't wait for them to return with help from the new marrow. That will be the day! The doctors think that will start to happen later this next week, maybe Thursday or Friday. Day +9 or 10.

The doctors say for now I couldn't be doing better. No infections, fevers, or any serious worries to address. My mouth has been getting pretty dry and sore which is a pretty common side effect from the chemo. The reservoir in my head looks great they say, same with the neostar in my chest.

The main thing bothering me is just being jailed in this room/unit. I gets unbearable. Yesterday Karlin was able show me some awesome Duckstore photos that really brought me back home. Thank you Hideki so much for taking the time to help with those. They made my day and I put them on my digital frame so they can always be on when I need them. Make sure Harold stays away from large packs of butter though. My only request.

Anyhow, love you all
GO DUCKS!

p.s. my brother's just bought me the new Wolfmother cd "cosmic egg". If anything, this is beneficial to my rock 'n roll soul! Thanks dudes! I've also been reading, but mostly staring at the book "Understanding Comics" by Scott McCloud. Couldn't recommend it higher if you have an interest in the medium.

More Pics from thanksgiving day

My mom's kindergarten class sent me a bunch of get well Aaron cards. Gotta love it.


My most-creative girlfriend. Who would've thought to bring back the "hand turkey"!! What a gal.


Oh! There she is, and me showing off the brand-new cozy-green beanie. Soooo niiiccee.


the fog.

Happy Turkey Day to you all!

I scored this morning with my meal. I wasn't feeling too great when I first got up, but as soon as my morning meal came the sun began to brighten. It was yet another beautiful, foggy morning in Portland by the way. Anyhow, when I received my meal I realized that I could create something outstanding by combining some of the ingredients that I had ordered. The nurse and I started with the english muffins and spreaded the butter over them. Next, we cut the omelet in two and placed each piece on its assigned muffin. The nurse then broke up the bacon and spread it over the omelet. annnnnddddd..... wwwwwwwaaaallllllllaaa!! A OPEN - FACED BACON EGG MCMUFFIN! made my morning because this day is a celebration of food and feast! well... among other thing. Anyway, I hope you can understand the kind of triumph that that was. :^)

love


This is Nurse Mat with the crafty breakfast hands. What a great nurse he has been. We've discovered we have a bit in common. Music, football, Harvey Pekar, etc.

The week in pictures...

Karlin here, thought I'd do a little photo recap of the last several days!

We started getting settled in quick... we've done this before. : ) Doing a little knitting in our "home."


The bathroom... which is actually really large and gives Charles his own shower, which is sooo nice in situations like this. And yes, that is his pee, sorry!


Setting up camp with books, movies, and the moose that The Duck Store sent him last time he was here!


This is what Charles' crazy Busulfan pills look like. Busulfan is an oral chemo. He was taking cups of these guys 3 times a day for several days. That's a loooot of little pills.



Us! This was day -7 I think.


We love the huge window (my bed is right under it) and our awesome view of Portland.



Melts my heart...


All that physical therapy makes a man pretty buff.


Just part of the awesome awesome team (left to right): Manami, who has been doing Charles' spinal and Ommaya reservoire taps, doctor Meyer, an assisting doctor, and Dr. Hayes-Lattin, Charles' main transplant doctor. He is also a young adult cancer survivor and has been amazing to us. He does a lot of work toward bettering the treatment experience for young adults with cancer. Charles really couldn't be in better hands.

Day +1 and Day 0 recap!

Day +1 has started off fairly well. Yesterday was day 0! Karlin was able to stay the night with me through the transplant and that made things so much easier. I was able to gather some kind of rest last night thanks to some help from sleeping pills. Otherwise I was up 'til about 1:00 on my own. The transfusion started at about 11:45 pm. The doctor had to come in for about 15-20 minutes to make sure everything was going as planned. If there are no bad reactions within the first half hour, none are expected. Once the doctor left we knew everything was okay as far as my system accepting the new marrow cells.



Karlin was a real trooper, she stayed up a good three quarters of the whole process before finally succumbing to the uncomfortable bedding as available. Everything felt just like a normal blood transfusion. I'd heard that some people could smell weird things, like the cells could smell like garlic or creamed corn, but I didn't get any of that stuff. It was just like a normal transfusion for me.

An interesting fact for all of you guys: when you get a bone marrow transplant, your blood type will eventually change to be the same type as your donor's. So my type will be switching from O positive to A negative because my donor is A negative. In this regard it's unlike other organ transplants, where the blood type has to match between the donor and reciever.



As for the beginning of day +1, me and Karlin were greeted with a stunning view of the city complete with fog, city lights and a beautiful sunrise. It felt like new beginnings! I was able to put down a hearty breakfast with no nausea problems which is always a bonus. Me and Karlin have already put in a walk and a lot of physical therapy and stretching this morning. Now we're just taking a relaxing break for some blogging and maybe watching a movie. I'll be recieving some further low-dose chemo and anti-rejection medicine throughout the day, but it's all scheduled, nothing out of the ordinary.




We'll update with any breaking news, but most likely it's going to be a smooth day.

Love, Charles and Karlin

Day 0 has arrived!

My apologies for the lack of posts. These past few days have tough as far as anxiety goes. I've had to take a medication called Ativan to help me with this. http://www.drugs.com/ativan.html It has helped a bit. We'll see if the anxiety dwindles today with the prospect of the new marrow cells. They will actually be collecting them today and shipping them as well. They will get here late tonight and the transfusion of them will be done around 10,11,12? p.m.? something like that. Pretty wild stuff coming from an international donor.

The past few days have also been time of rest when possible. Although I have seen a lot of physical therapists for my left-arm and just general strength and leg exercises.

love all of you and hope you are doing well. I'm sure Harold has pulled all of his hair out by this point with the ducks doing so well right now. I wish I could be there for this!

love
Charles

Pictures

my dad getting artsy?!








No big deal.


After my Picc was taken out. Thought it would hurt more.

Day -3

Ok I might just throw up some photos and a little text today. Feeling a bit tired beaten up by the chemo. Today was a good day even though Karlin and I still can't seem to make it to the end of Star Trek. I had a scheduled radiation this morning at about 9 that went very well. I also started a new iv chemo today called Cytoxan. I've had it before just not in such a high-dose. I will be getting another dose of Cytoxan tomorrow and that will be the last.

My family showed up to watch the Oregon Football game with me which was rad. What a game! Been thinking about everyone in Eugene. The Rose Bowl Cometh!!

Here are some random pics to finish the day:


This is what my new 'neostar catheter' looks like. It. is. awesome.


What a view?! Well done dad!


This nurse's name is Hugh. He's been my night nurse for the majority of evenings so far. He's a lovely and informative person and resembles Andre Agassi quite a bit. There has been no crystal-meth abuse in the past for Hugh though.

Day -3... I mean Day -4

Wow I wish that I could skip right over day -4. What an exhausting and challenging day. If my mental and my physical weren't embodied I bet the two would be off hiding in their own happy places licking their wounds. What a day! There was the gruesome, the crying, the waiting, more crying, the beautiful princess (yes, I didn't escape the Nintendo generation and I still do think in princess terms) saving the day for the battered warrior, and finally the corn nuts and Blazer game with the family to rejuvenate the spirits.

The day started poorly, without a proper breakfast because surgery was on the menu. No eat or drink! But still no fuel for the day, great.I was taken early to surgery for the placement of my 'ommaya reservoir'.



http://www.answers.com/topic/ommaya-reservoir

The reservoir will considerably improve the ease and the overall time it takes the doctors to perform lumbar punctures (spinal taps). The majority of my morning/early afternoon was spent waiting in prep/recovery for this minor surgery.

As I returned to my room the emotions of everything hit me very hard. I had no one there with me, I was starving with lunch already passed, I had a newly carved wound on the top of my head. I was just feeling pretty useless and grotesque. I cried a lot. These moments are critical - you have to let it out. Don't be afraid to feel what you need to feel. Shortly after I returned to my room Karlin had just gotten off work and she could tell I was in bad shape so she came right away <3. It's been a blessing to be so close now. The crying continued but there was much consoling as well. I had a hard time looking at her because I felt like such a freak with the cut on my head. I've learned that Karlin's ability to comfort and care for me are things that I cherish the most in this world. Not to mention her constant encouragement.

ok. so here are gruesome photos.





After the reservoir was placed I was informed that shortly I would be transferred to radiation oncology for a treatment simulation. This was good news because it meant that they had a lead on what has been causing my left-arm pain and loss of mobiliity. But it also meant that little to scarf,scarf, and scarf. I wolfed down two bowls of rice krispies, one and a half cups of yogurt, and 5 packages of graham crackers. yummm.

The simulation went well and they actually began the real treatments the very same night at about 7 p.m. There is optimism finally!! I was greeted by my family following the treatments which was oh so nice. Couldn't have been happier to see them. We got to watch the Blazer game (even though they lost) and I ate a load of corn nuts. The night was capped off with a BIG family hug and prayer. A great end to helluva day, Whew!

Day -5

Today has been about pain management. They are increasing my doses of oxycontin and oxycodone. Right now, as we speak Karlin has snuck off for some snacks because we are finally going to relax and partake in the beauty of STAR TREK!! YAY!

Family Time

Mom and Dad, what a team!


A common occurance... waiting around for doctors.


Time has shown me what a great man he is, my dad.


Just about to head off to OHSU, my brother Matt giving me his best wishes.


Wrapped in Scooby Doo and munching on birthday cake ice cream on my birthday!

Oh the Pain!

Just wanted to recap the happenings of today before I hit the hay. I'm just going to give a quick rundown and follow up tomorrow with more details and pictures. Karlin had the day off today and was able to be here for me most of the day. My great dad also made it up from Salem and I think my brothers are coming tomorrow. I can't wait guys!!

The majority of today consisted of pain management on my left-arm. I've had a decreasing percentage of mobility in it for about the past month. I would guess that it's about 20% mobility at this point. Occupational therapy has been visiting and will continue to visit everyday. They have supplied me with a heavy-duty splint and a sling to help me on my walks around the halls. There is concern of damage to the shoulder popping out of socket without the proper support. Additionally, they have prescribed some stretches for Karlin and I to work throughout the day. These seemed to have an immediate impact which is great because I'm left-handed!! I need my
arm!! :)

As far as pain management and drugs are concerned, small doses of morphine have been the best bet. We still are unable to locate what can best relieve the burning/shooting nerve pain in my left hand and forearm, but the splint is really helping. Otherwise we are still using oxycontin throughout the day, supplemented with oxycodone and neurontin.

I can't say how much I love my Karlin and the sacrifices she makes for me (eventhough her modesty will never allow her to talk of such things). You are so special my sweet bun! OK! no more gushy.

The one major annoyance today was that the dvd player for the room tv was malfunctioning. My family had been gracious enough to buy me the 2-disc special edition of the new Star Trek flick but Karlin and I were unable snuggle-up and gawk at the glorious special effects - Although the film does contain quite a moving and complex plotline as well. This Star Trek movie has been somewhat of a source of shame for me. You see, Karlin and I were planning on seeing it when it arrived in the theatres. Her not being a huge sci-fi fan I guess I underestimated her interest in seeing it, so I took my little brother. What a mistake! Luckily she doesn't use it against me too often. HaHa. Anyhow, I have hope that we'll be able to get cozy and let out our inner-trekkies tomorrow.

Also, tomorrow I'm hoping to put up quite a few pictures of the hospital crib and a view of the tram. Maybe some photos of the port in my chest. They were finally able to clean the area and change the bandages tonight so a nice pic is due for that. I'll also put up some pics of visitors and my splint/sling. ok... now I'm rambling the next dose of morphine is due soon. Remember, you can always ask questions of any kind and I will do my best.

Love you all so much!!

-Charles

ok -6 is here.

I can't sleep right now so I thought I'd throw something on the blog. I'm glad that some of you have been reading it! The Lumbar puncture went well yesterday. Only a couple times she caught a nerve but it was never to rattling. Ah, the power of morphine and Ativan.

http://en.wikipedia.org/wiki/Lumbar_puncture A very normal procedure for me. I've literally had about 40 of these done over the course of my treatments.

http://en.wikipedia.org/wiki/Ativan This is a wonderful drug - it helps with anxiety and sleep.


Later today I'm going to update you on the chemotherapy drugs they are using to prepare me for the new donor cells that are injected on day zero. Starting to nod off now... must lay down. commando over and out.

Day -7 in the works.

Well, here I am now. At about 9:45 a.m. this morning I had a visit from the i.v. nurse to take out my PICC (peripherally inserted central catheter) line. This had been in my left arm since late-March and I gotta be honest - it feels a little strange with it out! It will sure make showering less annoying by far. I was pretty nervous to have it yanked out but in the end I felt nothing. The nurse conversed with me about the tv show I was watching and the next thing I knew it was laying out on the bed - all done!

PICC line, that I used to have:


Chest port that I have now:


Thats been about the most eventful thing so far today. I will be getting a spinal tap at about 3 p.m. today just to keep Leukemia in check. I have a lovely practitioner named Manami who will be performing that. I've even talked her into a photo for the blog the afterward!

My intention for this blog is to try show as many details about this process as I can so that anyone confronted with a bone marrow transplant or a similar transplant may obtain some comfort and ease through their own transplant journey. There may be photos or information that may be a little too much for some and I apologize (Lynn).

In order to keep this blog up and rolling Karlin (don't know what I'd do without her, love you brownie) and I will be tag-teaming to make sure there is something up every day. I hope to get photos up soon so you can all see the view. Love you all and the countdown has begun! Day -7.

Day -8 in the books!

Okay, we're checked into the room that Charles will be living in for about a month (give or take) during the transplant process. We're very familiar with this neighborhood- we're on the same floor we were on for 3 weeks during the last time he was at OHSU.

This time we have a room on the other side of the building and a MUCH more awesome view! We can see a lot of Portland as well as the top of the tram station down below our window. It's also nice to see a few familiar faces of nurses who are still stationed on this floor that we got to know last time. They're amazing ladies and gentlemen. We're going to try to get settled in and make the room as homey as we can soon.

The counting process for bone marrow transplants is a little different. Days before the transplant are counted as negative days, so today is day minus 8 for Charles. Tomorrow will be day -7 and so forth until the day of the transplant which will be day zero! Days after the transplant will be counted as plus.

Today Charles had a port put into his chest for easy access as far has drawing blood and giving fluids, medication, etc. He will even get his new bone marrow cells through the port. Since March he has been using a PICC line in his arm, but the new port has more lumens (they're like little plugs that you can draw out of or plug into), so the doctors will be able to do more with it. He gets his PICC taken out tomorrow. It's been good to him but it's time for it to go.

The surgery for putting in the port went smoothly! Charles was a little funny afterward but not has funny as I was hoping he'd be. : )

He was wanting to do this update tonight but started falling asleep in the middle of it, so I told him I'd do the post for him. Hopefully he will pick up the computer tomorrow and give an update himself! Until then!

-Karlin