August 2011
1 post
Doing Great!
Hey y’all,
It has been a long time since I posted on here, but I thought I’d drop a line and let you know that I’m healthy and doing great. Back in June I had my 6 month scans and they still show no sign of anything. I’ll get scanned again in November, but with just a CT and MRI, instead of a PET scan (which I’m thankful for because the PET scan is a pain in the...
March 2011
3 posts
From the Top of My Lungs
Just a quick note to let everyone know that I’m out of the hospital and doing well. They’re still not sure exactly what’s happening in my lungs, but they have it narrowed down to a few things: either PCP Pneumonia (not as fun as it sounds) or damage to the tops of my lungs from the extensive chemo and radiation. I got a bronchoscopy yesterday, a procedure in which they force a...
groundhog's day
Yesterday, Shayne got admitted to the hospital again. He’d had a cough + fevers that wouldn’t go away for a couple of weeks, so his oncologist decided to admit him for observation, IV antibiotics + steroids, and more tests. It looks like it’s an atypical infection or radiation pneumonitis (inflammation of lung tissue as a side effect from radiation) but we don’t have any...
put it in the past tense
Let’s cut right to the point. On Sunday, Shayne got the reports back from his most recent scans. His oncologist couldn’t wait until Monday to tell him that he was 100% disease free. Not, the tumors have shrunk. Not the results look good, but the cancer is gone.
100%!!
We’d never expected for his doctors to be able to tell him this. I honestly don’t think they even...
February 2011
1 post
A long overdue update
I have to apologize for not writing on here in so long. It’s mostly because I’ve been busy living life again, instead of being stuck in hospital rooms where I have all the time in the world to blog. Plus the fact that most of my online time is spent on my phone, which is not an ideal blogging platform. Anyway, excuses…
In early January, I finished my radiation treatment. I...
December 2010
1 post
Suddenly Scanning
On Tuesday I went to the hospital for what I thought was a regular doctor’s appointment. To my surprise, someone had rescheduled my scans without telling me. So, now I’ve had my follow-up-to-the-bone-marrow-transplant-scans. What they reveal is a frustrating inability of medical science to say anything about the state of my disease. The MRI revealed 3 lesions in my brain, the same...
November 2010
3 posts
A year, in reverse
Rebekah, here.
Today is Thanksgiving which means it’s been a year since Shayne was diagnosed with Lymphoma. The past 365 days feel waterlogged, like a book that’s been dropped in the bath. The pages don’t fit neatly into a one-inch binding anymore, but instead fan out in the blur of memory. I could pull out the scariest moments, but those are better left untold. Instead...
An Overdue Update
It’s been three weeks since I got home from the hospital, which means I am a lazy blogger. The first week and a half, everything I did felt like climbing a mountain. I found myself having to rest in between each action. Between putting on my underwear and putting on my pants, I’d have to sit in a chair and chant “you can do this” over and over to myself. I was still...
Up, Up and Away
On Saturday (day +11), my counts finally started to inch up. Then, on Sunday and Monday they rocketed up, so I am going home tomorrow! I can’t wait to breath real air and see our dog and sleep in the same bed as my wife again. From what I hear, it seems like I missed an entire season while I was in here. It was shorts weather when I came in, but I see people bundled up in jackets outside...
October 2010
12 posts
this and that.
Shayne’s levels creeped up the tiniest, tiny bit today, which means that the stem cells are doing their magic (and will hopefully keep doing so). Nothing is certain until his counts get past a certain point, but it’s a baby steps in the right direction.
Since the last time I wrote, we talked to Shayne primary doctors and, in opposition to what the attending suggested, they don’t...
I'm Still Waiting
(This post may also not be safe to read while eating…just a heads up).
Today is day +7, two full weeks after checking in to the hospital. This is when the doctors warned I would be feeling the worst, as my body systems all reached their nadir. They gave me this morbid prediction as I was getting my chemo. At the time, it was hard to imagine I could feel any worse, but the doctors (as...
The point where I lose my temper...
Today Shayne’s attending came in for morning rounds and told us what they decided yesterday at their conference about Shayne’s case.
Simply put, he’ll be rescanned after the transplant. If there are no more brain lesions, he’ll get low dose brain radiation. If they still are there, he’ll get high dose radiation. They’re going to type him for a donor bone marrow...
Platelets. Bone Marrow. Stem Cells. Oh my!
I meant to mention this in the last post, but there are two important and free (yay!) ways you can help out Shayne and other folks going through this process.
1. There’s currently and as if often the case, a severe shortage of platelets at UNC. Platelets can only be stored for 5 days (versus 42 days for blood) so they always need folks to donate. Shayne hasn’t needed them the past couple of...
What goes down, must come up. (aka Don't Read...
Rebekah here.
It’s day +3 of Shayne’s bone marrow transplant, which has so far been eventful and really boring at the same time. He spends most of the morning throwing up (sorry to be so blunt) until he gets IV Ativan and then spends the rest of the morning sleeping, which he is thankfully doing right now. Every once in a while he gets up, eats, and then promptly gets sick again. Then they...
the luckiest (round two)
Today has been a surprisingly emotional day. When they say “13 syringes of stem cells” they leave out the part about how this moment marks the possibility of a cure and a long, long future. It’s that moment of stillness I’ve been looking for… the one where I can imagine us on our front porch in rocking chairs - grown up kids with grand babies on their hips - and...
What's Going On?
Here I am on day six of my bone marrow transplant. Actually, the doctors call it day -1. They count down from day -6 (when I came in) to day 0 (when I get my stem cells back) and then start counting up from there. So far, it’s been six days of chemotherapy and adjusting to living in a hospital. The first and third nights were both really rough (crazy headaches, mouth sores, all over body...
What's In a Name?
Hi everybody. I haven’t posted in a while because I’ve been too sick and depressed to write much. Fortunately, Rebekah has done a wonderful job carrying on with updates to let you know how I’m doing. I still don’t have much to say, but I couldn’t let this little gem go without sharing:
Every time I get chemo or have a serious procedure done, two nurses have to...
What's in a transplant?
This is part quick update and part “what the heck is a transplant anyway??”
Wowie - so we’re in the hospital (as am I in solidarity/caretaking) for what at first seemed like a very long time. Now it sorta seems just like the rest of the past year. Shayne’s hooked up to an IV. I’m drinking way too much coffee. We both read and watch movies and talk about everything we’re going to do once we...
Update
Me, again.
Some of y’all are probably wondering why I’ve taken over the blog lately. When Shayne hasn’t had teeth and tubes pulled out of him or the latter put back in, he’s been sleeping. When he’s awake, I’d rather hang out with him than be on computers. So I’ve been writing while he’s sleeping.
Today he got a TEE (transesophageal echocardiogram)...
to the teeth
Rebekah, here. Quick update.
Shayne got his wisdom tooth out yesterday, which as most things so far have gone, seemed almost like a Charlie Chaplin movie.
We were shuffled to one floor. Folks shrugged their shoulders. We went to another floor, they nodded that we were in the right place. We sat and waited. Shayne had so much blood drawn from him that it (almost) seemed comical (if we...
Quick Update
Rebekah, here.
I’m writing a longer post of what will become a series that I’ve previously affectionately called “Caregiving for Dummies.” First, I wanted to write a quick update since the last post ended abruptly.
Shayne is out of the hospital. For a brief moment yesterday we thought he was going to have to go right back in -he spiked a temp - but luckily we’re...
September 2010
7 posts
This building's totally burning down
Today is a blur. I’m losing track of time, but I pretty sure that all of the following happened today:
Shayne broke a fever for about 10 hours which means this infection is heading in the right direction - out the door. Huzzah!
There was a worry that there might not be enough platelets and then it changed to him being on an almost constant slow platelet drip - this still didn’t bring him to a...
Sticky germs.
Sounds gross, I know, but that’s the way the doctors described Shayne’s very own strep bug. In particular it likes plastic, so much that when this bug hangs out with plastic it’s completely resistant to antibiotics. In non-anthropomorphic terms, this means that as soon as his platelets get up to a normal level, his central line is going to have to be removed. There’s also a...
You give me fever.
Rebekah, here.
I’m going to attempt to be coherent in this post, but the hours of sleep I’ve logged are at an all time low so I can’t really tell up from down.
On Tuesday afternoon I had to rush Shayne to the Bone Marrow Transplant Clinic (our own special emergency room because his immune system is too weak to go to the regular emergency room). He spiked a fever of 101 which is dangerously...
Another update
Shayne is feeling better today (yay!) and after a significant dose of blood looks a little more rosy cheeked and a little less pale as a ghost. I think this + his silly band in the shape of fangs, proves once and for all that he is a vampire.
His white blood cell counts are low, which means he’ll probably have to get platelets in the next couple of days, but this was expected.
He still has...
Update
Shayne had a rough night last night. He spiked a fever in the middle of the night, so he had to get a chest x-ray at about 3am. As far as we know, that was clear, but his counts are all fairly low so he has to get a blood transfusion today. They’ve also started him on a couple of different antibiotics and some nutrition through his IV.
He’s also been in a lot of pain (mostly from his...
Ain't Too Proud to Beg (for nausea meds)
Rebekah, here.
Shayne’s central line surgery went well. And by well I mean, it happened a day late and a dollar short. Shayne checked in on Tuesday morning, I stayed at work to go to a handful of meetings and try to catch up after the holiday weekend. By the time my meeting was finished and I made it over to Chapel Hill, I was worried that I was going to miss his surgery.
Nope. He was...
Hair We Go Again
I am back in the hospital for the mobilization round of chemotherapy to prepare me for my bone marrow transplant (if that sentence doesn’t make sense to you, check the previous two posts for explanation). Today I am going into surgery to have a central line inserted into my heart. A central line is a lot like the port I already have, except that the central line will send a tube through my...
August 2010
5 posts
The Plan (part 3 of 3)
There has been a bit of a delay on the third part of this series. Those low levels that I mentioned in part 2 got even lower over the weekend, so yesterday I had to go into the hospital and get a blood transfusion. They hung a bag of caramel-colored platelets on my IV, gave me some Benadryl, and I took my first brave step towards vampirism. A life where I am dependent on the blood of others to...
Chemocore (part 2 of 3)
The plan, as developed in San Francisco by the doctor who advised against brain radiation, is to do a round or two of chemotherapy with a higher dose than I’ve been getting all summer, then to move on to the mobilization treatment to prepare me for the bone marrow transplant. I’ll explain more about the mobilization and transplant in the next post, so let me tell you about the strong...
Baby Got Back Pain (part 1 of 3)
A lot has happened over the past few weeks. If I were a responsible blogger, I would have been posting here as each new development unfolded. But I’m not even a responsible musician - the thing I am most passionate about in life (excepting my wife) - so you can imagine how easily neglected this blog can get. Instead of writing one huge post detailing all that has happened, I’ve...
A Legacy
In my family, lymphoma is a legacy. In 1987, my grandpa died from complications of a rare type of T-cell lymphoma. I was four, but I remember his laugh and sitting on his lap reading books. “Papa’s chair” was an overstuffed tan velor recliner by the bay window at their house in Ohio. He would sit in that chair after coming home from our high school where he worked as a janitor.
Not even a...
A decision and some numbers
We landed safely back in NC this evening and returned to a clean apartment (thanks Deb!). It was great to spend some time in San Fransisco, visiting with family and friends as we pondered the chemotherapy vs. radiation decision. In reality, the decision was made as soon as Dr. Rubenstein told us that he recommended strongly against radiation. When a brain specialist tells you not to stick your...
July 2010
5 posts
California Love
Hello from the winter wonderland that is San Francisco!
Shayne saw Dr. Rubenstein yesterday morning. He went over Shayne’s scans and medical history and almost immediately confirmed what I was hoping he’d say - he strongly recommended **against** brain radiation. He added that, in fact, a new chemo based regimen showed better long term results than the traditional radiation protocol.
He...
These Days
Lately days are daunting. Shayne and I still try to smile through them, but our road weariness shows. We aren’t fooling anyone anymore.
Shayne got out of the hospital on Sunday and has pretty much slept since. He tried to play music for a bit yesterday but came home looking more exhausted than I’ve seen him yet. He made it through dinner, but I don’t think he’s moved...
That's The Way We Get By...
Shayne was supposed to be released from the hospital today. We hadn’t heard from his doctor by noon, which we knew meant that his methotrexate levels weren’t low enough to go home yet. About an hour later, she came in to confirm that, no we weren’t going anywhere.
This past week has been the roughest of any yet - we met with transplant specialists and radiation oncologists and...
Disconnection Notice
Rebekah, here.
We’ve been quiet here for a bit. It’s been a non-stop tilt-o-whirl (in some cases, quite literally) ever since the TMKC benefit. Shayne got re-staged (PET scan + MRI) to check to see if chemo is working its magic. Good news is that there was a reduction in the size of the tumors in his brain, but not as much as Shayne’s oncologist had hoped. So Shayne is back in...
June 2010
6 posts
Can't Hardly Wait
We have a lot more to write about the benefits, a lot of pictures and thank yous and the literary equivalents of hugs, but we got some medical news this week and I wanted to share it with y’all first.
The protocol for treating my type of lymphoma that has recurred in the brain begins with 5 cycles of R-MVP (a type of chemo). Once those cycles are done, we do PET scans and an MRI to...
4 tags
Party people in the place to be...
Phew. We’re not really sure where to start, so let’s start with a number: $10,142.98 and counting… which is how much y’all helped raised yesterday at the TMKC benefit.
Thank you is an understatement.
As of right now, that not only takes a hearty chunk out of our outstanding medical bills, but we’re also excited that we can put a percentage aside for Friends with...
Sleepers Awake
Sleep is awesome. Not only is it an easy way to pass the time, it is also one of your body’s main methods of healing. Everyone from scientists to your grandmother agrees that, unless you’re one of the kids in Nightmare On Elm Street (or, god forbid, the recent remake), sleep is good for you. So, naturally the hospital staff seems hell bent on making sure that nobody there goes to...
A house. A home.
This past week Shayne and I went out on a limb. Monday morning before Shayne went back into the hospital, we decided to take a quick walk through a house for sale. It started out as a distraction and then ended up hurtling us back to reality fast than we were ready for.
We’d been looking for a house in Durham for over a year and this one was perfect. It wasn’t too big but had enough space for...
Stan
I’d like to introduce you to someone.
This is Stan, my IV stand. While I’m in the hospital, he is my constant companion. We are together 24 hours a day (except for when I shower…we haven’t made it to that point in the relationship yet). That line that comes out of the picture towards the bottom left corner connects to a port in my chest that feeds directly into my heart. Stan supplies...
Plans
Some people have asked me how I can be so positive in the face of what I’m going through. I’m not going to lie to you - sometimes this is really hard. Especially during the last few weeks. There have been days of pain and discomfort, when my skin hurts to touch and I don’t have enough energy to walk across the room. I’ve cried to Rebekah and whined like a baby that I...
May 2010
9 posts
Durham Magazine shows some TMKC love! →
WatchShayne and I are still in the hospital and on day 7/8 it gets real boring in here. Thankfully at the beginning of the week, Fiona brought us an amazing book that some of y’all* made for Shayne. It made us cry, it made us laugh, and it made us miss you like crazy!!
Thanks for making Shayne’s day brighter.
*this only represents some folks because I only copied over half of our...
Tonight I got angry at cancer. All of the things Shayne and I don’t get to have right now: a wedding, a farm, a normal schedule, my MFA, Shayne’s career, or even the ability to lay by the pool in the sun for the afternoon.
I wanted to scream. Say this is not fair. I couldn’t see past this hospital room and its too short couch. Maybe if I unhooked Shayne from his IV, we could...
Progress Report
Just a quick update. My chemotherapy started a little late this week because I was getting scans of my body and brain that had to be done before the chemo started. The bad news is that the delay means I’ll be in here longer than usual (probably until Sunday). But the really good news is that the cancer has not spread anywhere else in my body and it has shrunk by leaps and bounds in my...
It's oh so quiet...
Rebekah, here.
Tonight I came home to an empty house. It’s the first night of Shayne’s many months now of being in the hospital that I haven’t stayed with him - sliding off a vinyl couch, trying to arrange myself around the broken springs on an old cot, or seeing how long the two of us can manage to sleep in a bed that was definitely not built for two.
Sleeping in different...