I'm all clear....

So about a week ago Dr. Ho gave me the all clear!

I don't go back to Dana Farber until October!!

Jason's a horrible blogger

I really should update this more often. I was in the hospital for 4 days with pneumonia... all better now. They still don't know what caused it because all of the results of the bronchoscopy came back negative. Who cares right?

Dr. Ho has allowed me to return to work now. I started back last week and this is my first full week back. It's good to be back at work after the transplant, but I sure didn't miss the commute.

Abby's getting bigger by the day! She's already outgrown the tiny newborn clothes that my mom bought for her. For anyone curious, I'm still posting pictures of her at http://picasaweb.google.com/jayaeromech

Back in

Well, a little cough that I developed two weeks ago developed into a big cough last week. Then that landed me back in the hospital a couple of days ago. Why? Pneumonia.... yuck. My blood oxygen level was low so they gave me a chest x-ray and a CT scan. that verified it. Then they gave me a Broncoscopy. It was about as bad as it sounds. They stick a camera down my throat and look at the inside of my lungs. While they're there, they flush some of the gunk out to get a sample to figure out what's causing it (virus, bacteria, fungus, etc). They also did a small biopsy to make sure the tissue is healthly. Of course the biopsy is literally cutting into the lung, so I was coughing up small bits of blood for a while.

Results so far from the Broncoscopy have been negative. That means it looks like it's just an odd lung inflamation... probably a late side effect of chemo. They say I can go home tomorrow morning with some steriods to help be breath. Worst part of the whole ordeal? I couldn't be around Kate and Abby :(. I miss them.

Baby Pictures

Abby's here!1 For anyone interested, I've put some picture up on my Picasa site:

http://picasaweb.google.com/jayaeromech/ABBY

Enjoy!

30 days out

So, it's been a while since I've posted. A bunch of people have been bugging me saying "I check your blog all the time, how come you haven't posted lately". Well, there's not much to say. I'm still at home on confinement, I've been able to start working from home part time, and I haven't seen the doctor in a couple of weeks now. I did hit my 30 days out mark though.

Of course, now I do have some news. We're still waiting for baby Abby to make her arrival, but because of Kate's high blood pressure the midwife says that arrival is going to be no later than next week. If Abby doesn't come by then, they'll start the inducement process on Monday. Exciting....

Slow going

It's a little suprising how slow recovery has been. I tend to feel great when I take it easy and lie down most of the day, but when I push myself, fatigue and my stomach problems get the best of me. I am feeling better every day, but I'm definately not 100% by any means.

My blood counts are good, but my immune system is so immature and I have so few anti-bodies that I'm still on heavy restrictions. No public places, no sick visitors, no restaurants, no take out, etc. I can't wait until those restrictions are gone.

Off and On

It's day +22. I'm still at home and haven't had any fevers. I know I haven't been blogging as much, but that's because I'm not in the hospital and there's a lot less to report. My GI track is still quite affected. My stomach hurts a bunch, regardless of what I eat.

I have off times and on times. Sometimes I feel like a million bucks, other times I'm run down and feel like crap. It's tough to predict.

I have my first post transplant checkup with Dr. Ho tomorrow. I'm excited and a little nervous. I hope he says I can come off some restrictions in less than 100 days.

Happy Birthday John

Today is John Travolta's Birthday. That's what Kate just told me. To me it's day +18 and I've been home for 2 days. I'm feeling better every day. I still have a little bit of stomach trouble, but mostly I feel tired. I don't really feel sick, which sucks because I know I still can't be in public places or go to other people's houses or work. It would be easier if I felt god awful sick... it would be a helpful reminder of why I can't do those things. Don't get me wrong though... I still prefer the stir crazy and tired to the bed ridden sickeness.

The home life

Well, I'm at home now. I can go outside and in the car, but I'm not allowed in public buildings or other people's houses yet. My immune system is still too weak.

It's nice to be home in my own bed with my wife and dog. Just that does so much to help me recouperate faster. I already feel better than when I was in the hospital. I still feel very very worn out though, kinda like a Mac truck hit me.

For now it's great, but I think being confined to the house will make me stir crazy just as I was when confined to the hospital room.

Still, best thing is I'm at home with Kate.

Free at last

So, it's almost official. I have a couple of bags of IV fluid to go through and then they will take my hickman out and I should be out of here early this afternoon. Only 23 days after getting here and 2 days past my original release date.

They say I'll still feel like crap for about 2 weeks, but I'd rather feel like crap at home than here. :)

Thanks to everyone for all the cards! They filled my wall and reminded me of all the people who care!

Day ++1

It's day +15 now. Maybe I should call it day ++1 (expected release date plus one). Anyways, they say I'm comming home tomorrow as long as I drink my water. All else is good. They have to teach me some home care stuff with Kate this afternoon and then they should take out my catheter in the morning and hopefully send me on my way.

The only bad thing to report is that I had this horrible throat closing nausea last night. It felt like my through was closing in on itself and it was getting to my gag reflex, which was making me nauseaous. They're pretty sure it was due to withdrawl from morphine and they gave me some meds to take care of it.

Well, let's hope for tomorrow! I can't wait to see my girls.

Sleeping beauty

So, it's day +14 now. I've been here for 21 days. Today was my tenative release date, but they say I'm not quite ready to go home. My counts are up to about 6.5 or so, but they still have to wean me off all of the anti-biotics I've been on. I also have to be able to drink 1 and half of the little pitchers of water in a day before they let me go. (to make sure I don't dehydrate) They did take me off the morphine for the mouth pain today and they said my stomach infection is gone.

I've been able to eat a little again. Mostly yogurt and oatmeal, but I hadn't really eaten in the last 3 or 4 days. In fact, I probably spent 45 of the last 48 hours sleeping. The transplant just kinda wiped me out. It's not like I wanted to sleep, it's like I had no choice. Made me feel pretty worn out and lousy.

I was originally supposed to leave today, but hopefully tomorrow. I was hoping to get to spend valentines with my beautiful wife, but that's not gonna happen. She said she'd still be my valentine anyways. Gosh I love her.

So, now I gotta get weaned off the last of the drugs, drink my water, and wait for my home care instructions, then I'm on my way home. Let's hope for tomorrow!

The home stretch

So, I had a post started yestday talking about how it was day 11 and my wbc counts were up to about 0.87 but I was still feeling kinda misserable and that's why I hadn't posted in 2 days. Well, I thought I saved that to a draft so that I could finish it later, but it seems to have disappeared.

So, now it's day 12. My WBC count is up to about 2 today! That's almost what it was when I got here. They still have to run a differential on that, but one of the deciding factors before they can let me go home is my differential on a certian type of white cell must be 0.50. That means if 50% of the white cells are the type I need, and my count is 1.0, the differential count is 0.50. With a count of about 2, there's a darn good chance I'll be heading home soon.

Now I have every doctor aksing "How's your support system at home?", "Do you have people that can take you to clinic appointments?", "Do you have a way (other than yourself) to keep your house clean?"....
Shouldn't they have asked this before killing off all my bone marrow?

So, the good news is, I should be heading home wednesday or thursdays at this rate. I'm on so many anti-biotics and other support drugs that they can't just pull me off all of them at once, they have to wean me. Of course, that means for the first week or two at home and I'm gonna be all out of sorts, not having this constant flow of drugs into me. They're trying hard to get a bunch in my pill though.

is that the end of the tunnel up ahead?

Yesterday (day +8) was another one of the fevers / chills / sleeping / feeling like crap kept me in bed days. It's the morning of day +9 now. They told me to worst of the days would be +3-+9. Well, last night, to add to the fevers and chills, I came down with diarrhea. Not like the "trots", more like the "shouldn't that be solids". I don't need to sprint to the bathroom, but by stomach hurts and there definately is nothing solid about what comes out. The fun part, they have to collect it in this plastic hat thingy to make sure I don't have an intestintal infection.... fun for all.

Kate came up again last night. I fell asleep on her a number of times. She's very good to me though. She came up because she has the show this weekend, so she knew she wouldn't get as many chances this weekend. I still say she's doing to much.

Some good news from the Docs this morning! My white blood cell count was 0.11 this morning. Since I had my transplant, the white blood cell count has been between 0.04 and 0.08, oscillating each day due to statistical noise. 0.11 is defininately outside of the noise range, so it looks like my cells are starting to work and they expect my white blood cell count to start rising sharply now. That should help to get me out of here on time.... :)

HUH?!?

So, it's day +7 that means only a week left and that I should be feeling the dumpiest days right about now.

Today was a day full of confusions as well as some pains and plenty of sleeping.
So, it turns out that morphine tends to give very vivid dreams. Not scary dreams or anything, just very vivid. As an example, when I first woke up this morninging, I had been dreaming about being in my hospital room. When I woke up I was very confused. Had I just woken up, or had I just fallen asleep? Kinda trippy.

I finally figured out that the mouth pain was much worse, so I was awake. Add to the mouth pain and the confusion a 103.3 fever, and I was knocked out for most of the morning drifting in and out of conciousness. Then I had some med students come talk to me on their practicums. Hope I was coherent. Same for when Kara came to visit today.

This cycle of awake - asleep / coherent-incoherent / fever - broken fever / trippy - not trippy lasted well into the night. Then my favorite quote of the day when the nurse came in to tell me she had me and woke me from a deep sleep(sums up the way I felt all day)

Nurse: "I'll be your nurse on this next shift"
Jason: "Great! What time is it?"
Nurse: "9"
Jason: "AM?"
Nurse: "No, No, PM".

You see, I thought I had slept for at least 13 hours, in reality, it was 1.

Thanks for the support

I finally got up to check my blog. Thank you all for all of the encouraging comments!

As far as visitors went, I had Kate here yesterday, which is always nice. I also had visits from the Doctor team and some med students, but they don't count. It's always nice to see Kate and she has this magical ability to make me feel better, but with all the throat pain and off and on fevers, I was a little crabby. She pointed it out to me (she's not one to sugar-coat) but she took it in stride and kept giving me what I needed. She's really up for wife of the year award.

Like I've said, the fevers and throat pain have been really crazy. One of the problems with a fever is that I can't get blood or platelet transfusions if my temp is above 100F. This is because the body temp just kills off the cells. Well, my temp will often flirt with the limit and stay at like 99.8 and then all of the sudden I'll feel hot and flush and then have the chills and by that point my temp's usually up to like 102. Each time I spike they have to give me tylenol and get up to date blood and urine cultures to check for infection. If my fever is particually bad, I'll wake up shivering uncontrollably... not fun. I can usually tell when my fever breaks because I sweat like crazy for a while and then feel much better.

Yesterday was particually bad because I needed platelets and red blood cells, but it took a while to get my fever under control to give me the platelets. In order to control my mouth pain, I was all hopped up on morphine and then they had to give me benedryl with my transfusion (standard procedure). Well, that made me semi-comotous. It's really hard to keep up with the morphine drip button in that state, so I was half contious, cycling between semi-awake with crazy-pain, and out-like-a-light with no pain. My fever came back after my first bag of red blood cells, so I was only able to get one of the two.

My nurse Marsha convinced me to go onto a continuous morphine drip with the button to boost the effect when I wanted to eat. That seems to have broken the nasty sleep/wake pain/no-pain cycle. I was able to keep under the fever radar (i.e. below 100F) long enough to get 2 bags of blood today. They also increased my morphine dosage today. That has really helped to get the pain under control. Of course, since I started writing this, my temp has spiked again. 102F. That means more blood cultures and all. Hopefully I won't get the crazy chills and sweats tonight.

Kara and Brian came and visited me today. They both work in the area, so it's easy for them to stop by. Still, they've always been really good friends and it's always nice to see them.

Today is day 6. That means I started my neupogen shots yesterday and if all goes to schedule, I should engraft in the next 4-6 days for so. That means, if we stick on schedule, I'll be out of here in 8 days. I can't wait.

Slow couple of days

I apologize to everyone that's been following along that I haven't posted in the last 2 days. It's day +5 now and the puts me right on schedule for intense throat pain and fevers.

I've spent the last two days mostly in bed fighting fevers and pain.

Will post more details soon.

Day +3

Last night my throat pain went from uncomfortable to very painful like flipping a switch. They upped me to Morphine which helps with the pain but makes me sleep. I am on a drip so that I can get the Morphine when I need it. I had my first fever last night but it came down on its own.
My menu for the next five days or so looks like Jello, pudding, and popcicles. At least that is better than tofu stir fry.
In answer to Uncle Marty's question, I actually have a decent of view of the hills on the edge of the city.
Kate's brothers came to visit me today with Kate. They brought delicious icy things and we watched stupid movies.
I have enjoyed getting cards in the mail so please feel free to send them to my room number at Brigham and Women Hospital:
Jason Holmes
Floor 6C Room 53
Brigham and Women Hospital
75 Francis Street
Boston, MA 02115

Okay, now I am getting sleepy and need to go back to bed.

So fa so goo

Day +2 has been a pretty lazy day. My throat is really hurting now so I got some pain killers for it this morning. The pain actually woke me up. At least the pain meds work to keep it under control.

I slept in a bit this morning and then Dad called saying he was gonna come visit. I had my nurse unhook me from the IV so I could shower and then Dad showed up shortly after I got out. He brought two cards with him. I love getting cards. One of the cards had a hand colored airplane and a hand written note from Skip saying get better soon. It's the cutest thing and really made me smile. Thanks Skip!

I had to get some more blood in the afternoon since my counts were low again. This should help me feel better but I had to take benedryl before the infusion (standard protocol) so I basically slept from the time Dad left until just now.

Like I said, lazy day.

Who cares about the freaking light?

So, I've been here for 7 days now. I'm really itching to leave already. The good news is that 7 days is 1/3 of my time here. Only about 14 to go.

Today had some agrevating points and some nice points. My mouth and throat are starting to get more sore, but I expected that. This morning, at about 10:00 or so, a maintainence person came in to check on the light that was broken in the room. It had been broken ever since I showed up a week ago. He took a look and then said he'd have to call someone else. Since I had only experienced the room with the light broken, I told him that I didn't mind if they didn't fix it until I left. He said "OK".

About 20 minutes later another guy shows up and says he's here to fix the light. That's right about the time my grandparents Dede and Grandpa called from Curacao. I was really excited to hear from them and wanted to let them know how I was doing but this jerk didn't take the clue that I was avoiding him and trying to talk on this international phone call. He decides that he needs to move my bed and a bunch of other things so he can get at the light. No need for a tranplant patient to have access to his bed right?

Anyways, it was good to hear from Dede and Grandpa and that at least made things ok. But then this guy decides he's gonna take apart the whole light fixture to get to the wires so he can remove it to replace it. That takes like 30 minutes during which I had to just sit here in the dark. It's not like I can go to the cafeteria for a break or something. Long story short, he eventually replaces the light (which I didn't really care about) and then puts the bed back in place so that I can actually lie down.

As if that hassle wasn't enough, auditors at the hospital randomly selected my file to review, so my nurse (mind you, my nurse today was a new one to me) had to be off answering questions to the auditors for a couple of hours. Big hassle for her since she only knew me for 10 minutes before hand. Big hassle for me becuase I couldn't really get any nursing service for most of the morning.

After my nurse returned, however, my other grandparents, Nana and Papa, gave me a call and told me they were gonna stop by for a visit. That was great to hear... both sets of grandparents in one day. I took a shower before they got here and got to visit with Nana for about an hour. Papa couldn't wear the masks that are required becuase they were too hard to breath through, so I said "hi" through the glass in the door.

Ever since they left I've eaten dinner, chatted with Kate, and played PS2. So all in all, a day of frustration but also nice pick me ups. Ahhh... only 14 more to go.

On the positive side

Day +1. I'm finally on the positive side.

Pretty boring morning. My mouth and throat are starting to get uncomfortable, but that's to be expected since my counts are down. It's called esophagitis - i.e. sores in the esophagus.

Suprise! You stink!

So I got my stem cell transplant today. Biggest suprise? Right before I got my first round of cells at 10:00 in walks Kate! What a great suprise! She took the day from work to come be with me for my transplant. She brought new comfy shorts and some box drinks (the room is soooooo dry) and a couple of cards (one from her and one from abby). That certainly picked up my mood. I'd been missing my girls since the last time I saw them on Sunday. I was one happy transplant patient.

All in all the transplant was very anti-climactic. My nurse, Marsha (who's awesome), set up all this crazy stuff like suction, oxygen, heart monitors, etc. and I had none of the possible side effects. Well, other than the smell. The side effects come from the preservative that they put in with the cells to protect them when they freeze. Well, apparantly this preservative has a rather pungent smell. Marsha and Kate said it smells like a nasty, garlicy tomato soup or something, but for some reason, the patient (that would be me) usually doesn't smell it. I'm glad I don't smell it becuase apparently it's smelly enough that they give me an extra hepa filter in the room to get rid of the smell.

Nothing else to really report for now. I had a little indegestion and some blisters on my skin from the catheter dressing, but nothing too bad yet. Let's hope the rest goes as smoothly as it has so far. Knock Knock (that's me knocking on wood).

That chemo sure worked

Got my morning blood results. My white count has dropped off nicely - 0.7. The normal healthy count is more like 5.0.

That means the chemo's doing its job. I'm scheduled to get my cells back at 11:30 and 4:00, two doses.

What do you get when you put 4 scientists in a hospital room...?

So, tomorrow's the big day. I get my stem cells back tomorrow. I've heard it will be relatively anti-climactic. Still, it's good to be about a quarter done with my hospital stay.

This morning sucked. I felt horrible. I was able to eat some breakfast, but by the time I had a shower and lunch rolled around I was in no mood for food. I felt faint an nauseous and just plain gross. Marsha (my nurse) told me that my red blood cell counts were low and they were going to give me some blood. That should make me feel better. In order to give me blood, they first have to give me benedryl. Well that put me into a semi-comatose state. It really knocked me out.

The guys from my old lab at BU (Parag, Caleb and Zach) showed up at just the right time though. I had already gotten some of the blood and the benedryl had partially worn off, so it was really nice to catch up and shoot the breeze for a while. Certainly broke up the monotony. Thanks Guys!

After the guys left I got to talk to Kate for a while too. It's nice when I get to talk to her when I'm awake and alert. I haven't been able to see her in two days now and really miss her. Even when I'm asleep in the hospital bed, it's nice to know that she's sitting next to me when she's here.

Well, that's it for now. By the next time I post I should be a transplanted man.

By the way, I found this picture of Roxy on my laptop which conveys what it's like to be stuck in a room for 21 days:

mmmmm.... hospital food

Today's been a pretty boring day. As I said in my last post, I woke up with horrible headache, but my nurse Carol came to my aide with some oxycodon. They use stronger drugs like that rather than tylenol because tylenol can mask a fever, and that would be bad.

I spent a good portion of the day laying propped up in the hospital bed. Kate got me a bunch of new DVDs so I watched Top Gun, took a nap, watched the Posiedon Adventure (the original), took a nap...

The comments everyone has been sending have been great! I look forward to reading them and they really pick me up. I can't wait to be done with all of this and then Kate and I will finally throw our BBQ party once I hit my 100 day mark (should roughly coincide with May graduation time).


Also, I've discovered some key tips for ordering food here.
1. If it sounds fancy... it's gross.
2. Don't forget to order you condements.... you have to check everything or they don't send it. Hence my pancakes the other day with no syrup.
3. Mac and Cheese and Fettucini Alfredo are safe.
4. No carbonation ... chemo + carbonation = the worst hiccups ever.

That was a lot of drugs

Day -2. That means I've finished the chemo portion of the transplant process. Still going relatively smoothly, but I had a horrible night sleep last night. All of the anti-nausea drugs that make me sleep during the day have really thrown my sleep schedule all out of wack. I woke up a lot during the night and now I have a splitting head ache. But hey, I'm not puking my guts out...

Day -3 now. That's how they count the days. Everything before my transplant is negative, the day of my transplant is zero, and everything after is positive. Talked with the doctor on rounds this morning. He said I'm doing great and holding up to the chemo really well. My counts have started to drop now... my white blood cell count is below normal but still at 2 point something. (It should drop to nearly zero). That makes me susceptable to infection, so now it's very important to take all the visitor precautions.

I'm feeling a little better today than yesterday. I had toast and potatoes for breakfast (much easier to stomach than that tofu) and I got about 12 hours of sleep last night (thanks to the drugs I'm on).

The nurse just came in and started my chemo. One of my anti-nausea drugs has worn off now (lasts 3 days) so they gave me something else to tide me over for today. It's actually an anti-psychotic drug. I wonder if they discovered the dual use of the drug my the lack of nautious nut jobs or the abundance of sane chemo patients...

Stir Fry Tofu Sucks

Day three of chemo. I have a little bit of nausea, not too bad. Kinda wiped out. Good news is they will probably take out my Hickman catheter before I leave. The Hickman is the central line that goes directly into my heart and makes me bionic. We have to clean and flush it everyday so it will be nice for it to be out. Also, I will be able to lay on my stomach.
Tried tofu stir fry...bad decision. It almost made me throw up. That'll teach me to never order my dinner while I am loopy.

For real

These hiccups suck!

BTW here's an untrasound picture of Abby for everyone!

-J

A Father's Joy

My second day is going well. The nausea is not too bad and I even ate a bit. I have some horrible hiccups right now, but I got to feel my baby move. After sifting through all sorts of names (and there are some really wierd ones out there) we have decided on Abigail for our little girl. It is a Hebrew name which mean "a father's joy." Pretty perfect I think.

Adjusting to the life of confinement

So the first day of chemo is down, and we're into the second. The drugs they have me on for this round realy seem to help with nasuea. (knock on wood).

Kate was here with me most of yestarday, but I think I slept through most of it. Still, it's comforting to have here here.

The nurses here on 6C (I had requested 6D) are very nice. There is one named Marsha how is so very nice and checked me in. She's probably only a year or so older than me and she has straight blond hair. Makes me want to say "Marsha Marsha Marsh".

As for visitors, I can have visitors to Brigham and Woman's Floor 6C room 53 with a couple of conditions. 1. there can't be to many people at once. 2. If you have symptoms of germs or viruses or have been exposed to germs or viruses, you'll have to wait until another time. 3. There can't be any childern :(

I hope everyone it the world outside room 53 is doing well.

Chemo so far has been smooth sailing, so i'm hoping for some more.

Here we go...

So, they started my IV drip with my pre-chemo drugs. They should make me pretty sleepy, but we're off and running...

My Fair Ladies

So, it’s my first night in the hospital. Pretty boring so far. I’ve had to answer all sorts of medical questions and I’ve had some time to get situated. It turns out I got a pimped out room… A room for two all to myself. (Usually they put transplant patients in a room for one). Unfortunately one of my two TVs doesn’t work… I guess that means I can’t watch TV and play PS2 at the same time…

I’ve been here for 4 hours by now and you know what I miss the most so far? My three ladies. It’s just not the same with out Kate, Roxy, and the baby kicking around in Kate’s belly. Kate’s taken such good care of me that I’ve already found myself saying to the nurse “That’s not how my wife covers my central line dressing.” There’s something that Kate has that just makes things ok. Maybe part of it is my little girl inside her. I can’t help but smile when I think about her.

As for Roxy, she’s a wild one, but when I’m feeling lousy, she knows it somehow and she’s such a good cuddler. She’ll hop up on the couch and wedge herself between me and the cushion and wrap her legs over me as her doggy way of saying “I’m here to make you feel better.”

Well, so far I’m only hooked up to saline. They tell me they want me to pee a lot so they start saline early. I’ll start chemo in the morning but they’re giving me the “MVP” round of anti-puking drugs – three of the strongest as opposed to the one I got last time. Hopefully I won’t make dinosaur calls so much.

I'll have a cytoxin, shaken (not stirred), with a twist of fate...

"To Whom it may Concern: This letter is to confirm that Mr. Jason Holmes has completed all the necessary requirements for his doctoral degree... Mr. Holmes will be officially graduated on January 25, 2007"

That's what the letter says that I got after I defended my dissertation. This allowed me to start work and assume the full responsibilities of "Dr. Jason". So what? Well, I dug this letter out because I've been thinking about that date lately. In a crazy twist of fate, it turns out that Thursday, January 25, 2007 is not just a big day for me, it's a huge day. All in one day I'll become a doctor and a 3 week admitted patient. Sure, I technically get admitted on Wednesday, but the first round of high dose chemo comes on Thursday.

This makes me wonder, how many people have graduated and started their transplant process on the same day? Anyone? Do I need to wear my cap and gown?

So I'm digital now

Well, in preparation for my stay in the hospital, I have set up this blog to keep everyone informed about what's going on with me and my treatment. I have nothing much to say yet, but I'll be adding as I go along. I get admitted in two days, Wednesday, so wish me luck!