This Machine Killed Cancer

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 ass).  I had an appointment last week with Dr. Shea, my bone marrow transplant specialist, to check up and see how I was doing.  As I was leaving his office, he slapped me on the back and said, “Congratulations!”

I know there are people who read this blog because the terrible thing that happened to me has happened to you and you are trying to find some advice or solace or something.  I don’t really have any wise words about what to do - they say that a positive attitude is important, so maybe fake that until it becomes real - but I want you to know that this thing is beatable.  My diagnosis was about as bad as it can get, an aggressive type of Stage IV Lymphoma in my heart, lungs, pancreas and brain, and yet here I am a year and a half later, almost as healthy as I was before I got sick.  I’m finally back up to my pre-cancer weight.  My band is playing shows again and we’re going into the studio next week to work on our long overdue album.  Our house is still in the process of being remodeled, but it looks like we’ll be able to move in by next February.  Also, Rebekah and I have started running, and I think that by this time next year, I’ll be back up to my pre-cancer strength and endurance (hopefully beyond it!).

I probably won’t be posting here very much any more.  This blog has been a great way to keep the people in my life up to date on how I’ve been doing.  Now, I get to see y’all in real life (at shows, at the bar, for dinner, etc), and I don’t have to let you know what’s up via the interwebs.  Before I sign off though, I want to leave you with two pictures.  The first is of Rebekah and me looking healthy and happy at our friend’s wedding earlier this summer:

And the second is something that I saw in the parking deck at UNC Hospital every time I was there.  I think it’s good advice, whether you have cancer or not:

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 small camera up your nose, down your throat and into your lungs.  However, since they won’t have the results until next week, my doctors decided to just give me medicines to treat everything it could be and sent me home.  They’ll call me when they figure out what’s going on and tell me which ones to stop.

The drugs seem to be working, because I am no longer having coughing spells that leave me gasping for air.  I am still quite short of breath and tire out easily, but Rebekah and I were able to climb to the top of Occhoneechee Mountain this evening and I only had to stop a few times.  We had a nice picnic dinner and watched the supermoon rise.

As always, thanks for the calls, texts, and emails.  Y’all keep me strong.

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 conclusive results. 

None of this is surprising or out of the ordinary. Sometimes when I look at Shayne and think about all of the chemicals and radiation that have been pumped through his body, I’m not sure why he isn’t a pile of goo or glowing green. A machine gun cough + a fever, those we can manage, but I know he won’t be sad to see them go.

As I was driving to the hospital, I kept thinking, I have no idea how we did this for over a year or a month or even two days in a row. But then my thoughts turned to how there are families who are at the beginning of this struggle. There’s a partner frantically trying to rearrange a life that just got flipped upside down. Someone who just realized that this might be the last time they see the ocean… and my heart breaks. 

I sincerely wish I could say to each of those people that even on the darkest days, they’ll find strength. You’ll do things that you think would be completely impossible and afterwards, you won’t even remember how. 

Walking back onto four oncology, it started coming back. There were big smiles from nurses who would shout, “hooray, you’re back!” And while we both know that this is the last place we’d rather be, a warm welcome takes the sting away. Shayne was a late admission, but the food services guy recognized that and brought him a tray even though he didn’t have an order. The NA remembered us, asked about Shayne’s new last name, and tried to keep Shayne distracted while he got his IV. All throughout, I talked to my mom, sister, and my best friend in California. 

I remembered, it wasn’t just the two of us. That’s how we got by. 

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 expected that it would happen. We thought there would just be reports of tumors shrinking, the disease being managed, and another scan down the road. We had settled into our new normal of managing his disease week by week. 

But now, by some miracle, it’s gone! *poof* 

Needless to say, we’re still in shock, but we’re looking forward to a spring of rebuilding our house and recalibrating our sense of what’s normal. 

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 lost all my hair again and have been pretty wiped out for the rest of the month, but it’s good to be done.  That was my last cancer treatment, hopefully forever!!!  One of the best things to come out of the radiation treatment was that my doctor (Dr. Morris, head of radiation at UNC), looked at the scans from early December and said that he would consider it a complete response.  According to him, the spots that appeared on my brain in the MRI are just how a brain looks after lymphoma.

So that’s two great things to mark an end of this crazy saga.  I say “an end” instead of “the end” because I can’t ever really close the book on it coming back.  I’m still going to the hospital every week or two to get checked up or scanned.  It’s kind of hard to imagine that this might all be behind me.

Rebekah and I have moved out of our fancy downtown apartment and back in with her parents to try and save money while work is being completed on the house.  I’m plugging along on it when I feel well enough to work, outfitted in respirator, gloves and goggles to keep myself safe in the process.  The walls and ceiling are all torn down and the big tree that had to go in the backyard has been felled.  We have our second meeting with the architect tomorrow and should have some plans together soon.  I’m hoping that we’ll have it at least livable by this summer, even if it’s not completely finished.

I’ve also begun practicing with my band, The Future Kings of Nowhere, again.  We’re brushing off the cobwebs and preparing a bunch of new material for the upcoming album.  We’ll be playing out live again soon - first show is on May 7th at Motorco in Durham.

Sorry again about how long it has been in between posts.  I’ll try to keep putting out short updates every now and then to let you know all is well here in Durham.

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 as the MRI in August.  One of the lesions is a tiny bit smaller.  The problem with MRIs is that they cannot distinguish between tumors and scar tissue.  It is very possible that the lesions are just the scars left over from my tumors.  It is also possible that they are tumors that survived the bone marrow transplant.  There is no way to tell without actually doing a biopsy, which is impossible unless I want major brain damage.

The PET scan also showed similar results to what we saw in August.  There is still a mass near my heart, but the PET activity is most likely residual effects from the chemo. In English that means the mass there is almost definitely just scar tissue. 

The truth is you can never know if Lymphoma is completely gone. Even if my scans were completely clear, there could still be Lymphoma cells in my body. The only true measure of whether the cancer is completely gone is surviving. Because of that, these scans can only bring no news or bad news. No new spots on the scan means no news, which in this case is good news. 

Regardless of what the scans showed, my doctors would be recommending radiation as the next step. So that is what I will do. Other than that we just have to wait and see. I’ll get scanned every three months. Right now, I’m in what is called a “clinical response,” meaning I show no signs of active disease. If these spots on the scan are scar tissue, they might shrink as time goes by and they might not. Hopefully they won’t grow - that would mean they are tumors. If five years go by without any signs of recurrence, the doctors will look back and say that I’ve been in a complete response this whole time. 

Cancer is funny like that. It exists in probabilities. When I first got sick, I was told that I had a 60% chance of beating it. Then, when it spread to my brain, that number dropped to 40%. The lack of response to this summer’s treatment led to a bone marrow transplant which carried a 30% chance of success. That number is low, but the fact that I survived the transplant itself bumps it up a bit. And every day that passes that I’m not showing signs of being sick that number inches up a little bit more, until someday I am hit by a bus or I choke on my space dinner at my great-granddaughter’s house and we can say with 100% confidence that I survived cancer. Til then I live with the same wonderful uncertainty that everyone else faces of not knowing what’s coming next. 

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 I’d like to remember the parts that kept us going.

November: One of our dearest friends ran the New York City Marathon for the Leukemia and Lymphoma society. Not only did she finish under her goal (3 hours 22 minutes - booyah!), she also raised over $4000 for the LLS. What she doesn’t know though is that LLS recently offered Shayne a grant to pay for some of his still outstanding medical bills. Proof that karma works.

October: Right before Shayne started his transplant, we took a quick trip to Richmond. We stayed way high up in a hotel right downtown, went to a folk festival, and found my new, favorite used bookstore, Chop Suey Books.

September: We bought a house. It looks like this. It needs a lot of love and some elbow grease, but it’s filled with the possibility of our future. A great dane leaning it’s head over the fence. Toddlers peeling out on the hard wood floors. Rooms filled with laughter. We are so very grateful for the few folks who made this possible (you know who you are).

August: “The cure for anything is salt water - sweat, tears or the sea.” - Isak Dinesen We took a long weekend trip to the beach with a few lovely folks and got all three.

July: At the end of July, we flew to California to get a second opinion from a doctor that specialized in primary CNS lymphoma. As luck would have it our extended family happened to be close by. We got to see chosen family, cousins, aunts, and even the newest addition the crew, 2-week old Evelyn.

June: phew. that benefit. all that love. i could add 1,000 more words, but it would be saying that over and over again.

May: Some of our friends + family got together and made Shayne a book + video. This made us smile on even the grayest of days.

April: Well, April was no good. It lived up to it’s April Showers + April Fools reputation. Shayne’s brain tumors were detected. We spent most of it in the hospital. Luckily our friends and, even more importantly, our family were right there by our sides.

March: A friend put together a benefit CD called This Album Kills Cancer. We discover the joy of jigsaw puzzles. It snowed a lot. I found a fantastic new job.

February: We spent a sunny afternoon at Elodie Farms with brand new baby goats (we’d hoped to have our wedding there this past fall).

January: Shayne surprised me and flew my bff from Cali in for my Birthday. In, turn she surprised us and threw us a benefit. Then helped kick off Band Against Blood Cancer which raised $191,000 for the Leukemia Lymphoma Society. (Yeah, we think she’s pretty awesome too!)

December: Shayne proposed to me! In the woods, with Christmas lights strung up in the trees. We bought a couch and a TV (two absolutely vital chemo treatment purchases). We found out we really love TV. The was the beginning of our couch sitting, silly grinning days.

November: We got married with less than a weeks notice. Some friends and family gathered in the Urban Zen Room at Beth Israel Hospital to witness our “I do’s” in skinny jeans and gray converse. At some point, we hope to have a “real” wedding. We’re still working out the details. You can read more about the story on Offbeat Bride.

Looking backwards, it’s not been such a bad year after all. We found a lot of laughter. A new perspective, a whole lot of love, and countless things to be grateful for…

Mostly I’d like to say thanks for the hugs. The understanding. Your patience. For reading this… and for loving us despite our faults, our tiredness, and our sometimes anger.

Thank you. Yes, you.

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 throwing up a lot and I slept 16 hours a day.  But I wasn’t in the hospital.  That’s important.

I slowly started dragging my ass out of the house - to the coffeeshop, to my in-laws house, to the top of a parking deck where my friend Heather was shooting a music video for her band Mt. Moriah (look for me and Rebekah when it comes out - I ride by on a skateboard and Rebekah dances around in a fantastic tutu).  I realized that, no matter how bad it felt, I had to start getting off the couch and living life again.  If I waited to feel better, I wouldn’t know when to begin.  So I didn’t wait.  I went out and saw the world.  Besides, I felt like crap all year and lived through it, what was a few more weeks?

I may have pushed a bit too hard, because I came down with a nasty cold - probably from being at the mall for my niece’s birthday.  It seemed like a scary setback, but when I saw my oncologist she said, “Nope, it’s just a cold.  Everyone gets them.”  A week later and it is mostly gone.  And somewhere in that week the leaden weights fell away.  Getting out of bed stopped seeming like such a Herculean task.  I’m still weak, and will be for a long time to come, but I feel at least as good as I did this summer in between hospital stays.

On December 13th I go back to the hospital for scans to check on the disease.  The hope is that it’s gone, considering the massive amount of drugs we just threw at it.  After the scans I’ll start radiation treatment on my head and chest to make absolutely sure that the cancer is gone and won’t come back.  This is a little like grilling a hamburger and then popping it in the microwave, just to make sure it’s done, but since we’re talking about cancer and not salmonella, we figure better safe than sorry.  The radiation will probably knock me back down the sick ladder, but hopefully not for too long.

It is strange to go for weeks at a time now without seeing a doctor.  Part of me gets freaked out that they’re not checking my levels every day.  But mostly it is really nice not to be at the hospital all the time.  The one year anniversary of my diagnosis came and went last week.  I thought it was going to be a difficult day, but I actually forgot all about it.  Tomorrow is the one year anniversary of me and Rebekah getting married.  Chances are good I’ll probably forget about that one too.  Whoops. (Actually, we’re acknowledging but not celebrating - the date is too tied up in the cancer diagnosis and we didn’t get to have an actual wedding with ALL of our friends and family present … once we get to do that we’ll start celebrating anniversaries).

So that’s where I’m at right now.  I hope everyone enjoys their Thanksgiving this year.  Last year, I got robbed of the holiday (total bummer because it’s my favorite one).  This year I’m eating twice as much to make up.  I hope you have as much to be thankful for as we do!

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 my window as they walk around now.

Of course, just because I’m at home, doesn’t mean this process is over.  I still have to stay on this neutropenic diet (no fresh fruits or veggies, no pepper, no yogurt, etc, etc) for a few more weeks.  And I’ll be back at the hospital every day to check my levels and get blood if I need it.  The risk of infection is still very high, so I’ll have to maintain all of the crazy precautions that go along with a busted immune system.  But by Thanksgiving, I should be mostly recovered from all of that.  My immune system will stay weak for months, but it will be strong enough to resume a normal life by then.

On day +40 (just after Thanksgiving), I’ll get scanned to see whether the cancer is gone or not, and then begin radiation.  We’ll let you know when that’s coming up so everyone can cross their fingers and toes.  Hopefully, by then end of the year, I will be totally done with treatment.  I’m looking forward to rebuilding my body (I’ve lost so much muscle mass, it’s ridiculous).  And starting to play shows again.  And traveling around the country (world?) with Rebekah.  And working on our new house.  And basically getting back to the life that has been on hold for the last year.

Thanks again to everyone for all the support and love as we’ve gone through this process.  It’s strange to think that the hardest thing I will ever do is almost over.  But it is.

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 want Shayne to immediately move into getting a donor transplant. They think it would be more effective in two years when his body isn’t so stressed from all of the chemo and this current transplant. A whole lot can change in two years, but they’re planning on going ahead and typing him so that there won’t be as many hoops to jump through when/if that time comes.

HUGE thanks to everyone who’s recently become a part of the bone marrow registry and who have donated platelets. 

Good news: He’s allowed to have visitors now! Woo! You still have to scrub up, and you can’t hug Shayne, but we’d love to see your faces. There are a few rules: 

• Absolutely no visits if you’ve had the sniffles or feel like you’re getting the ick. It’s going around right now and even a normal run of the mill cold has the potential to be a big set back.
• Also, probably no visits if you’ve been around someone who’s been really sick.
• You by no means have to, but if you want to bring something to Shayne it *can’t* be fresh flowers, fresh or dried fruits and veggies, or anything with black pepper. 
• 12pm - 6pm are prime visiting hours, maybe a little bit later some days, but that’s usually when Shayne’s at his best.

That might sound kinda serious, but it’s really just: wash your hands, don’t be sick.

Send us an e-mail at thismachinekillscancer@gmail.com or text us when you’re thinking about stopping by just to give us a heads up.

Because honestly, we miss you. We really, really do.

Overall, today has been pretty boring. Shayne’s been sick most of the day, but that seems almost normal now. I’ve been working non-stop on a website launch for my job (I’m staying as close to 40 hours as possible even though I can’t always make it into the office) and trying to keep busy with other design odds and ends. 

After dinner I’ve researching spas and detox programs that Shayne can go to after he’s finished with treatment and radiation. Earlier in the evening, I went to a group for the caregivers on the floor. One of the other caregivers is taking care of her daughter who had non-hodgkins lymphoma, which relapsed a few years ago and more recently has turned into leukemia as a result of the toxicity of the chemo (I’m just sorta paraphrasing here, so this part might not be 100% medically accurate). 

There was a point in Shayne’s treatment where we had to decide to put all of our trust in Western medicine or take a risk that alternative treatments might help more than they would complicate his situation. His oncologist asked us to not include any supplements while he was actively getting treatment. Not because she doesn’t believe that they would work, but because they could change Shayne’s body chemistry and make false positives for other complications. We made the decision that we wouldn’t add anymore factors into the mix until after Shayne finished chemo. Then he relapsed as has been getting chemo ever since.

So as soon as he’s finished, we’re throwing the homeopathic book at him. We’ll be chugging kombucha with wheatgrass chasers. Swallowing handfuls of maitake pills. Doing bikram until our pores beg for mercy. Anything and everything to get the residual chemo + waste from the cancer cells out of his body. Be gone toxins!

Which is why I’m looking for all natural detox programs. If anyone has any suggestions, send us an email. I’d rather find a program based on a recommendation rather than pick one out based on a yelp review. Also, if it happens to be in a warm, sunny place that we could fly away too, well, that would just be an added bonus.