Boston Arboretum

Well, I intended to upload some sweet photos from my journey last Wednesday. Harriott came up and we walked around an arboretum. I had never been to one before. Basically, it's a big park with trees from around the world. The land was donated to Harvard back in the day and now they keep it nice and fun. I walked up a big hill, which winded me, but it felt nice to get out and push myself just a little bit more.

To be honest, I can be kind of lazy, so I'm happy Harriott got me out of the house. I would upload photos, but this website keeps giving me error messages.

Big day on Wednesday! Getting a CT scan to look for fungal nodules on my lungs, liver, and spleen. Mmmm.... fungal nodules. If it's clean, I can finally stop taking those blasted almond shaped pills... remember those? What I find funny is that I used to fear x-rays because of the radiation exposure... but after what I've gotten in only the past 6 months, it suddenly doesn't feel so bad.

Best news is that it's only a chest CT, not an abdominal one. This means I don't need to drink barium for 2 hours before the scan, nor will I need to get an injection of contrast into my veins.

Laundry Day!

I have a riddle for you.

What did Bulwyf do today?

"Not fair, sssssss!" you say? Okay, well I'll give you three guesses.

Nope, I did not paint my hand.

Nope, I did not cut something with a knife.

And I didn't find a piece of string, nor did I do nothing.

For the first time since September 2011, today I did my own laundry! I wasn't allowed to for a while for the same reason I wasn't allowed to clean. Probably not best for me to be around all that dirty stuff. But as time slowly goes on I'm able to do more and more. Now, I still shouldn't do others' laundry, just my own, and though I can clean my pots here and there, I think Dr. Grant prefers I stay away from the kitchen sink for the most part. Vacuuming (or for those of you in Pittsburgh, sweeping), is still far from being on the table. It kicks up dust and inhalants, and respiratory issues seem to be the things most people are worried about.

But, I can now bring back my middle name from my time in the mafia. "the laundry man"

Bulwyf "The Laundry Man" Broclergaard.

I think this calls for some Supertramp!

19 Years Later (in five parts) V

April 21, 2012.

This was my Day 100. It's the first major milestone for a BMT patient after discharge. Dr. Grant gave me the go ahead to open up my diet. The huge change was that I was now allowed to eat fresh fruits and vegetables. This is a pretty amazing feeling when you can only eat pre-packaged, canned, and frozen garbage for three months. I celebrated by eating a cobb salad.

The other huge change was that I was now allowed to walk inside other buildings, so long as i wore a mask. This means I could finally do my own grocery shopping and pick up my own prescriptions. I could also order take out food, or buy it from a restaurant. I couldn't eat inside, but I could now eat things like a california roll. Raw fish is still no good. Deli meat is still off the table as well.

After this, life began to speed up a good deal. The days were going SO SLOWLY for the longest time. But a lot of good things happened in May. I got a lot more energy. I bought a season pass for kayaking on the Charles river and went a couple times. I started to get freelance work again, so I updated my system.

A bit of background.

Before I got sick, I had been living in NYC as a kid trying to make it in the film industry. Well, somehow it actually worked and I chose sound as my field of choice. So I had a small system at my apartment, but for the most part just worked for my employer at the studio. I mixed things for broadcast TV and got to mix a feature film for theatrical release as well (this movie used 6 speakers! It's an entirely different way of mixing, altogether!).

It's an entirely different way of mixing.

So I started to get work that I could do from Kym's apartment, and that has only picked up. I've missed working, so this is pretty great.

Oh! And I got a CT scan. Remember back in October when they took out my blood spigot because there was yeast in my blood? Remember how I was taking those stupid almond shaped pills? Well I'm still taking them 7 months later. The fevers I was having in late December were caused by this fungal infection. They did a CT scan and found fungal nodules on my lungs, liver, and spleen.

Ew.

But now we are trying to get me off of that. I had a CT scan at the end of May and the nodules were gone, but they also saw increased inflammation which could be a result of any number of things (including the fungus). While the docs were pretty sure the infection was gone, ultimately they ruled it inconclusive, and I'll get another scan on June 27th to determine if I can stop taking those pills. Currently I am taking 600mg of Fluconazole one time per day.

Hmm.. other medical things to catch everyone up on...

Prednisone! It's a steroid used as an immunosuppressant. It was helpful to prevent GvH, but I am happy to say that as of my last visit, I am no longer taking it.

Tacrolimus. This is used to prevent more broad GvH. It makes me shake, which is kinda funny. If I have too much of it, I begin to twitch, especially when I'm tired. That part is annoying. Fluconazole and  tacrolimus are both broken down in your system by the same enzyme, so when I am taken off of the fluc (pronounced flook), my tacrolimus will be getting an adjustment to make sure the levels in my blood stay the same.

Magnesium: Tacrolimus breaks down magnesium in your system. So right now I am taking 800mg of magnesium oxide 4 times a day (3200mg/day total).

Folic Acid: Helps cell regeneration.
Multivitamin: Gives me multiple vitamins.
Bactrim: Prevents fungal lung infections. I'll be on this for at least a year. Apparently it has a pretty nasty reaction to alcohol, so that's out for a long time.
Acyclovir: Anti-viral. Prevents things like shingles. I have the viruses that cause mono and chickenpox in my nervous system, but no immunity. Without this drug I would be in a world of pain.

I think that about covers it. I got myself a primary care doctor in the area. This is important because if something happens where it's inappropriate to visit an oncologist (see: broken leg), I still have someone I can go to who knows me. She is part of the same hospital so they share all medical records which makes things very easy.


So here I am. It is now Saturday, June 16th, 2012. The last few months have been almost unbelievable. I still don't know how I feel about it. Sometimes I feel angry, sometimes I'm just looking forward to the future. Other times I feel grateful... It's hard to pin one thing down, but most days I am just happy that Kym and Bill happened to be at my parents house that one week in October.

Update

Feet weren't swollen today.

WIN

19 Years Later (in five parts) IV

February.

After a bit of time in the hospital for the transplant, I was looking forward to February 1st. I was really hoping to get out of the hospital on Kym's birthday. As it was, I couldn't do that. I was being treated for graft vs host disease (where the cells wake up one morning to find themselves in what I can only imagine must seem like the Land of Oz to them... I guess they landed on a monocyte with Ruby Slippers). The thing is, I was probably addicted to morphine at the time. So in retrospect, there is a good possibility I was just undergoing withdrawal, which can produce surprisingly similar symptoms as GvH. Oh well, hindsight is 20/20 and I'm not a doctor.

But I wasn't happy about this. I was so unhappy, I didn't even wish Kym a happy birthday. It doesn't make sense, and I feel like a pretty big dick about it now. But in my lame defense (what kind of brother doesn't wish his big sister a happy birthday?) this was around the time that I was taken off of my anti-depressant due to the serotonin syndrome. This was a very terrible time, and my spirits hit rock bottom.

The 22 year old boy in the next room lost his months-long battle with leukemia on February 5th. I don't think in my entire life have I ever had a more negative outlook on... well, everything... than those first few days in February. It was 4 months ago and I hardly even remember a lot of it, but it's still hard to seriously talk about. I imagine it will be that way for a very long time.

The good news is I went home on the 8th. I was released from the hospital and joined Bill and Kym at their apartment. They had gotten the carpets all shampooed and the entire apartment sanitized. Any visitors for a few months had to wear surgical masks in the apartment and my diet was extremely limited.

No fresh fruits or vegetables
Nothing from restaurants
Thick skinned fruits were okay, but you still needed to wash them before cutting
Cans had to be wiped down before I opened them
No grapefruit
No popcorn
No deli meat
I could have commercial-packaged deli meat, but I had to microwave it first as to not let listeria.
No deli cheese, again packaged OK
No fresh bread or pastries
No fresh spices, all must be thoroughly cooked
Frozen vegetables, okay
Frozen fruits, NOT okay

The easy way to think about it was that everything had to be either cooked or processed.

For the first few days after being released, they were still worried about GvH so my dairy intake was limited as well. Limited = banned.

At this point though, being out of the hospital and having my own room without nurses coming in every four hours, my spirits lifted so quickly it was like night and day. I was much happier. My muscles atrophied a ton during my four months in the hospital.

I ran a 50k race a month before getting sick, and now I couldn't even walk up the stairs without getting completely winded. I went into the hospital at 165 lbs, and my first day out I was sitting at 119. 119 with no hair/eyebrows, very skinny arms, bones visible, thin neck. Looking at a photo, it was pretty disgusting.

Oh yeah. At one point I got a staph infection from TPN (because I wasn't eating) and had to get my two blood spigots removed.. again. The replaced this with yet another PICC line in my left upper arm, and I was sent home with it. I was also sent home with IV antibiotics that I had the wonderful pleasure of administering to myself. Bill, my dad, and Kym... mostly Kym... helped out with that because it was a very difficult one man process. The other thing was that every time I took a shower, I had to waterproof the thing.

That was annoying more than anything. But it was soooooooo great to be back.

So anyway, I had a doctors appointment with my Transplant Oncologist, Dr. Grant, every week for a while. I got a blood test, vitals taken, medications reviewed. My mom came up, my dad came up, a few friends came to visit, Kym and Bill continued to sanitize everything every day. They bought my groceries and prevented me from doing stupid things. At one point, some GvH flared up and I had to go back on steroids for a while.

Days turned into weeks. Weeks turned into months. And then my aunt and sister (Meddy) came to take care of me for two weeks in April while Kym and Bill finally got to go on their honeymoon...

In Thailand!

And while they were away, I successfully hit my first major milestone. Day 100.

And with that, I will leave you until the final conclusion of 19 Years Later: A Broclergaard's Tale.

Weird Science

You know, this whole experience has been rather odd.

That's about the only word I can use. There are things that I've felt both emotionally and physically over the past few months that I can only begin to describe to people. One of the oddities of cancer over a disease like strep throat or a cold, is that you aren't really better for a very, very long time.

If I were to get strep throat, I'd take some anti-biotics, chill out, and when my meds were done, great! Back to the world. But it's not like that this time. I've been in remission since late December, 2011 (about 6 months now). Remission essentially means that when Onk stuck a needle into my bone for the umpteenth time, she didn't find any leukemia cells. Since then, things have gotten much worse, and are now getting better every day.

But here is where it really just feels weird.

You know those aches and pains everyone gets? When you sit down too long and a few joints might feel a little sore. Finding yourself to be more tired one day than another. A slight ring in the ear randomly. These are all things that are normal, but they start to freak the hell outta me.

Example:

Today, I was walking around and my feet felt odd. I look down, and they are swollen and red. What am I to make of that? I was walking around a lot more today than usual. I went to Target and to the grocery store. Maybe I just haven't been so active recently? Could it be a reaction to a medication? I haven't changed medications any time recently to go along with this. Maybe a blood clot? Blood clots are more common among the blood cancer crowd (leukemia and lymphoma), but both of my feet are swollen. Does it make sense that I could get two blood clots in my legs at the exact same time, during a day that I'm walking a lot? Is it GvH? Did I forget to take my acyclovir this morning? Could this be shingles? I've never had them before. Should I page the doc? Maybe I should just email them? Or what if it's nothing. I don't want to waste their time and I really don't want to go back into the hospital unless I absolutely have to. What is this? What should I do?!

All because my gorram feet were swollen.

Ultimately, I've decided to hold off on any brash decision making. I'm going to see how they feel when I wake up, and how they react when I walk or stand. I'll pay extra attention to them, like I pay extra attention to every single little thing that seems a little bit off from normalcy. Those things I always had the luxury before of ignoring. I can't help but wonder when this feeling will pass.



Of course, while I was writing this, I felt a slight pain in one of my muscles in my back. Probably because I'm hunched over at the keyboard. I can't ignore it though. No matter how hard I try.

19 Years Later (in five parts) III

(Say this next part in the voice from 24)

The following takes place between Thursday, January 19th and Tuesday, January 31st.

(Wasn't that sweet?)

Ok, so here's the dill. This was by far the worst part of the entire process. The pain was terrible enough that I was given a morphine pump that I could hit every seven minutes. I time traveled often, and to this day I can't tell you who was around and when. There were days that I would sleep for 5 minutes, wake up, and forget what happened that morning. I experienced serotonin syndrome, which amoung other things included me seeing cats in my hospital room (admittedly a little funny in retrospect). 

Point is, I'm deferring this post to my sister, Kym. She works in oncology and was updating a few of her friends at the time. As I have very little perspective/memory, here is...

The Life of Bulwyf in the Words of Kym

Day +6 today. He is not eating at all or able to swallow pills because of severe mucositis in his throat. Thankfully, the majority of his medications can be switched to IV drips. His transplant doc thinks he will need a morphine pump by the end of the week, but so far he is doing ok with just getting the morphine and other pain meds when he asks for them. Otherwise, just having some nose bleeds like he has had before. Hanging in there, though. I'll be here all day with him, trying to keep his spirits up.

Day +7  [Bulwyf] grimaces every time he has to swallow his own saliva so we are suctioning out his mouth for him when he needs it. He is vomiting daily but most of it is just mucous and pieces of his mouth and throat tissue which are coming off due to the mucositis. Morphine continues.  He is also having fevers and his blood cultures grew bacteria (meaning there is bacteria growing in his blood) so he is on 2 IV antibiotics. He needs a bag of blood and a bag of platelets today, just like yesterday. Here's hoping for brighter days ahead.

Day +9  [Bulwyf] got a morphine pump yesterday which has helped tremendously. I strongly advocated for this, as it is NOT ok to see someone I love in this kind of pain. He is pretty out of it since he is getting so much pain medication but I would much rather have that than see him in so much pain. Since those pesky blood cultures were positive, he had to get the 2 Hickman lines in his chest taken out and gets all medication through IVs in his arms and blood draws from his arms. The TPN was also stopped because that would make the infection worse, but hopefully in a few days he will be able to swallow again and could possibly try some protein shakes to help get some nutrition. Here's to hoping. He started his daily shot, neupogen, to help boost his white blood cell count up ([Bill] also had a form of this when he was getting chemo). Hopefully it will boost his counts up to get him home to our apartment sooner. 

Day +13  White blood cell counts are finally coming up which is great. He was doing really well yesterday- he got a PICC line placed in his arm and re-started TPN. This morning, they took him off of the morphine pump and just gave him small amounts of morphine when he needed it. His throat pain is improved overall. 

This afternoon he started puking again and spiked a fever. Boo. Hopefully his blood cultures won't grow anything this time.

His goal is still to get home by my birthday next Wednesday, but we'll see. 

[Bill] stayed home today and got all the rugs professionally cleaned, and rented a cleaner to clean every piece of furniture in our apt. This weekend we will get down and dirty with the deep cleaning of the hard surfaces. There won't be a germ left in our apt by the time he is ready to come home! 

Day +15. I came in to the hospital at 7am and [Bulwyf] had a 104.3 fever and was vomiting. However, his white blood cell count is coming up so it is not unreasonable to hope for him to go home by next weekend... but we'll see. We need to find out where these fevers are coming from. He gets a CT scan of his chest, abdomen, and pelvis today. IV nutrition continues. Blood cultures from Thursday haven't grown anything yet which is great news. 

Day +18: As of last night, there was some improvement overall, with a few road blocks in the way. 1) Those pesky fevers were coming from a new fungal infection in [Bulwyf]'s left upper lung. A second antifungal medication was started to combat this. 2) As his fevers continued unto the 104-105 range, so did the rigors (uncontrollable shaking). He was getting a drug called demerol for this, but this drug, in turn, caused Serotonin Syndrome. You medical folk know that this can be pretty nasty. The serotonin syndrome caused even more fevers/rigors/agitation so the demerol was stopped, IV fluids were increased, and [Bulwyf] has been on a cardiac monitor since yesterday morning. As of last night his fevers were down to 102. The unfortunate part is that since he couldn't get the demerol for his rigors anymore, there was a point where he rigored for about 3 hrs straight. :( Hopefully that is all over with now. 

Upside: He ate solid food last night- a fruit cup and some mashed potatoes. Hopefully the TPN will be discontinued soon as he is starting to nourish himself again. Once these fevers ago away he can start thinking about coming home! The cleaning is done so now all we need is him.

"A young stem cell with new DNA, who was a pupil of mine until he turned to evil, helped the new blood hunt down and destroy the old. He betrayed, and murdered your immune system. Now your cells are all but extinct."

19 Years Later (in five parts) II

Wednesday night was Bill's bachelor party. I went out to dinner with the gang, but when they hit the bars, I headed to my friend Gator's apartment. She works in veterinary medicine, so it's funny to me when she says things like "Oh you're on [medication]? We give that to pigs when they show symptoms of [disease]." It's pretty interesting that there are so many medications that work across species, and there are still people who don't believe in evolution...

But that's neither here nor there. Thought it might be... where was I?

Right! Wedding! So Wednesday night I spent at Gator's, Thursday night was the rehearsal (I saw a few friends from high school who were surprised to hear of my current predicament), and Friday was the wedding. It was a lot of fun and my whole extended family was able to make it, so I got to see everyone at once (a luxury I would soon be without). My blood counts were still all out of whack as I was recovering from my second chemo treatment from a month earlier. I was very tired and couldn't stand for too long at once, so I made sure to sit down every now and again. When Saturday came, I woke up early for a brunch my mom put together, but passed out around noon and didn't really recover until maybe sunday night.

Overall, being home was very nice and I'm glad I got to see so many people, especially Conroy, Gator, and their family.

But now we were headed back to Boston, and a lot was in store. Over the next few weeks, perhaps the worst of the entire treatment, I went through a lot and was on many drugs. My memory is exceptionally hazy, so the events that follow I bring to you in large part due to Kym's own writings.

Thanks, Kym!

So it began as a countdown. I was admitted on Day -6, and I got two blood spigots directly into my heart. This was a surgical procedure and I was left with 4 tubes coming out of my chest. These would be used for chemo/blood/medicine/fluids. Days -5 and -4, I got chemo which made my stomach reject food and goo back onto the floor and my shoes. On days -3, -2, -1, and 0, I got TBI (total body irradiation) to kill all of my hematopoietic stem cells. I felt terrible, puked a lot, and got the only tan I'd have for months.

Day 0!

The day I get the transplant. Sorry to tell you all it's actually extremely anti-climactic. The donor basically sits there and gives blood that goes through a centrifuge that sifts out all the stem cells. Then I sit around and the cells are given to me like any other blood transfusion. They float around, hide out from observing eyes, search for food (kinda like fish!) and then eventually build their little huts in my bones and colonize it. But this time they don't give the natives smallpox, so everyone wins.

Kind of. They might not give the natives smallpox, but if there are any natives left, the new guys hunt down and destroy them in a very Darth Vaderesque way.

So there I were, sittin' around, when everything began to suck. A lot.

19 Years Later (in five parts) I

Or maybe just a few months, but it feels like a few years.

Sorry everyone who was worried, as it turns out, there are many of you. My bad.

So what the hell happened?

I'll tell you in a poem, but it's meant to be sung to the tune of "Twinkle, twinkle little star."

I stopped writing in late November when my oncologist told me I'd need to come back in for another round of chemotherapy, as the first round didn't get everything. I started on MEC and so my second hospital stay began. My good friend, Gator, came up for the first weekend and spent the night at the hospital. We watched a DVD of the Pinky and the Brain and although my spirits weren't exactly high at the time, it was exceptionally nice to have her there.

The next few weeks went by partially uneventfully. After getting through some of the side affects like eyes that felt as though they had just been dished a generous serving of pepper spray, things settled down. I admit my mental strength was beginning to waver so I started on a drug called celexa. It's an anti-depressent that worked well to keep me from falling too far emotionally. It was about this time when I was first really hit by the idea that this was going to be a long term endeavor.

Generally, this second round went much smoother physically, which made it much harder mentally. The first time around, I was hit with weird spikes in my blood results (see: 12,600 LDH), infections, wild fevers, and rigors, all of which did a good job of keeping my head pretty grounded in the here and now. The second time, it was all pretty smooth. But because I didn't have anything neat doing on medically, everything just got boring. I ended up losing more weight down to about 135 (remember I started around 160-165) mostly because I had little motivation. It kinda sucked, but man.. it was so much better than what was to come.

Meanwhile Kym and Bill were trying to plan their wedding, and a lot of things ended up happening in a short amount of time. To be very honest, there was absolutely no guarantee that the MEC was going to work. If it hadn't, the plan was still to take me into the transplant phase, but at the time there was no way to even guess what was going to happen. It was a bit scary. If I didn't respond to the MEC, there wasn't any common next step. At that point doctors just put together an experimental regimen of chemotherapy and hope for the best. My point is, in December, we didn't know how I was going to react or how long I might even live.

Kym and Bill had been planning a nice wedding for the Fall until I took an enormous dump on that and their focus shifted to making sure I was well. They talked it over and, given the uncertainty of the future, decided to get married right before my scheduled transplant admission, planning on me being there. I was discharged on the 17th of December, and began to have fevers. They were mild at first, so we decided to just watch them for the moment. I got a bone marrow biopsy to see if the chemo worked, and we were waiting for the results.

No answer yet from Onc. She gave us the go-ahead to move forward with our current plan, so we loaded up the car and headed for PA. My fevers began to increase, but only at around 3am and hitting around 100.2. 6am to 2am they tended to be normal. Still no answer from Onc.

It was now Christmas day. That afternoon, I knew I had to call Onc, though I didn't want to. I already missed a time to hang out with Gator and I was worried she'd have me come back to Boston.

I called her.

"Come back to Boston."

Gorrammit

So Fumos, Kym, and I drove the 7 hour trek to Boston. Once again, just like my second admission, I was very bitter about all of this. I wasn't scared yet, because I didn't have the medical knowledge of Kym. But she later told me she was scared most during this time over any other time during my treatment. She feared tumor fevers. You know.. those things I was getting the week before my admission to hospital. The things that stem from a large number of cancer cells.

I was mad because I had to interrupt my time home with a 7-hour trip to the hospital, and Kym was worried that we might be back where we were in September. I'm glad she kept that to herself at the time. So I got a CT scan and stayed at Kym's place that night. The next morning (Wednesday) I had a meeting with infectious diseases, and the Doc told me that there were fungal nodules (like you see mold growing on bread) in my lungs, inside my liver, and inside my spleen.

I must admit that sounded pretty bad. 100 years ago, it probably would have been. But we lived in the Future now so it actually wasn't bad at all. I just needed to up my dose of Fluconazole to 600mg and I could go back home. Phew, missed a potentially fatal bullet on that one.

We had to pick something up before heading back, but made our way back to PA by nightfall. MY energy was low, so I rested.

And was woken up by a call from Onc at the break of dawn. You know. The time most people call other people. I heard Onc's voice. I woke up a little more.

"Hey I wanted to talk to you after you're meeting with Fetch yesterday. I have your results."

"Oh! Yeah sorry we kinda booked it out of there. I didn't realize you wanted to see me."

"That's ok. I wanted to let you know you're in remission.

Remission.




Remission.

I remember that word just floating there accidental-like on a breeze.

"Oh! ... uhh.. great, thanks! So I guess we're still on track for the transplant then?"

"Yep, everything will go to schedule for now."

"Great. Great.. well, thanks so much. This is really great news!"

I hung up the phone and put my head down, but not before sending a few text messages first.

Remission.

My family was coming into town. The final wedding preparations were coming together. Kym and Bill, a guy and girl who sacrificed anything and everything they needed to without question for my benefit (including their wedding date) were getting hitched in three days. I was lying peacefully in my room at my parents' house, and the cold sky was silver-blue out the window. I couldn't've been happier.

Remission.

It was Wednesday Morning, it was 3 days after Christmas, and 82 days earlier a New York oncologist looked me in the eye and told me I had cancer.