Day 16: The Fierce Drug Regimen

As promised, here's a rundown on all the drugs I'm currently taking. It's a little shocking at first glance, but it's the truth. Katie and I figured it would be easier to balance these lists into 3 separate parts and talk about them that way, so that our readers could understand easier too.

Right off the bat, we're going into the chemotherapy drugs. I remember being in Chicago on Monday and getting the first treatment of these drugs. They delivered two bags of IV's to my room with the hazardous material label on it. (Kind of made me chuckle.) Followed by which time, one of my doctors actually said, "and since you've been having backpain and sore joints for a while now Jonathon, this chemo will go to work right away on killing those cancer cells, and you might actually start to feel better, instead of worse." I couldn't help but laugh.

'Here....take this poison...you'll feel better...call me in the morning!'

Rock on. I didn't actually end up feeling any better afterwards, but it was very weird seeing two bags hanging from my IV tripod labeled 'hazardous.'

Drugs used for chemotherapy:

Prednisone: Taken twice daily by mouth. Tastes horrible!
Vincristine: Only administered Mondays so far by IV. (Through port.)
Daunorubicin: Only administered Mondays so far by IV. (Through port.)
Methotraxete: Administered certain days of their choosing by Spinal Tap.
PEG-Asparagase: Only had this one once by IV last Thursday. Bad news bears. (Did not like this one!)

Immune System-helping Drugs:

Avalox: Antibiotic taken once daily by mouth.
Acyclovir: Anti-viral taken twice daily by mouth.
Diflucan: Anti-fungal taken twice a day.

Side-Effect Managing Drugs:

Compazine: Anti-nausea taken when needed. So, far about every other day.
Miralax: To keep the pipes clean in case they get stopped up.
Dilaudid: My new favorite pain med - more on that one later.
Nexium: Yes, the little purple pill you see on TV. Every day by mouth.

Most people have one of those pill organizers so they can keep track of what they have to take every day...yeah, me too. Only I have TWO of them for morning and night. It's insane.

Which, brings me to Dilaudid! Man, this drug is fun. When we went to the hospital that night because I couldn't breathe, my chest hurt so bad, they gave me Dilaudid to help with the pain. It calmed the chest pain I was having, as well as allowed me to take deeper breaths. It can be given by IV, or by mouth. (IV is MUCH more fun, of course.) This drug is a serious pain-relieving-thought mauling-acid-trip-inducing-I'm-going on a free spirit walk in my mind running around naked and no can see me kind of drug! BUT! Here's the catch: That feeling only lasts like around an hour. And then, you're as sober as a priest on Sunday. It's slightly stronger than morphine, I'm told...but wow. When you're in pain, that's a quick fix, FO SHO! I still have it in pill-form, but I really try not to take it unless I really need it. I could become a druggie off that one man!


More tomorrow...

Day 15: Local Follow-up

This morning we had to get ready for our follow-up appointment with Dr. Park at 10am and that's when things started off a little rocky. For whatever reason, I got nauseous in the shower while I was washing my hair and well, I won't go into a lot of detail, but needless to say, it wasn't pretty. Afterwards, I felt like hell, and just overall stricken with the desire to lay down and sleep.

But we soon got rolling, and we were out of the doctor's office by 11:30. My white blood cell counts have dropped to pretty low levels, and that was expected, but my red blood cells and hemoglobins are doing good. In fact, their levels have actually risen since I was in Chicago. Dr. Park pretty much instructed me to keep doing what I've been doing. (Eating right, walking around when I can, and allowing for plenty of rest.) All of which, I've been doing with extreme precision. The only real problem I'm having is trying to figure when I'm really hungry or if my stomach's upset. All of my inner workings are messed up and are trying to reset themselves.

It seems like towards the end of the day, moreso in the late afternoon hours, I feel almost human again. Like I could get up and walk around the block, or do something in my basement. My body soon reminds me that I can't, just yet...but it's those moments that are keeping me going...keeping wanting more of those normal life moments. It's truly amazing what we learn to take for granted any more.

Tomorrow, I'll go into what drugs they have me on and what they're doing to my body. Sound like fun?? Let's just say, I'll never give another woman a hard time about mood-swings or hormone levels EVER again.

Day 14:

In preparation for what the doctors tell us will be certain hair loss, Jonathon had me buzz cut his hair this morning.  I think he had more hair than I do.

He continues to be in good spirits, but is exhausted as a result of the chemicals in the chemo and the severe anemia that is caused by the chemo and the disease.  Being home has definitely helped - he is eating much better (thanks for the all the food, Peggy!), and he's getting a  much more restful sleep since there's no nurse waking him up every few hours to take his vitals (which also means I'm getting a much better sleep too).

Both of our dogs are very happy that we are home (but we can tell they miss their Grandma Sue), and  they both seem to understand that they need to be careful with "Dad." 

It feels good to be back home and doing normal things like laundry and cooking.  Driving my car today was a good feeling.  But we are already preparing for the trip back on Monday.  It's amazing how fast you can get a new routine started.

Day 13: Home at Last!

After a horrible ride home yesterday through Laporte County's snow-stricken roads, we finally arrived home around 5pm. My mother hung around for a little while, but after getting me settling in, she herself, began her journey back home. Fortunately, my other Mom (Katie's Mother Sue) was still here and ran to Meijer to get the gigantic regimen of pills I still need to take on a daily basis. Which is about 10-12 of them, blech!

My dogs are very happy to see me, especially Maya, who has grown like 50 pounds since I last saw her. Sue did a great job watching the both of them while we were gone. It's just amazing how fast Maya has grown. She doesn't even look like my dog any more!

I still feel very weak. My strength level is down to probably 30-40%, maybe less. I took a shower for the first time in my own bathroom last night for the first time in a while, and it nearly killed me. I'm working on getting my strength back up. But for now, it takes a lot to just walk around and do simple things. But I haven't lost my hair yet! So that's good. (They're still saying it will though.) Bummer. I'm thinking about having my wife buzz me off beforehand anyway. That way, at least it won't be such a shock at first.

I'll be letting my wife handle the comings and goings of visitors for now till I regain my strength. She's good at being my firewall. But you're all welcome to call me here at home, preferably at variable times at 574-233-0643.

On top of all that, the night before I got home, my laptop died. Nothing makes me happier than firing up my computer and having that black screen come up saying 'Operating System Not Found.' Ah...yes. Piece of crap. That's hard drive #4 for that Gateway piece of crap in 4 years. Luckily, I've been schooled wise in the methods for backing up my data. So, that's no problem. Just a pisser, I guess. For now, I'll be using my wife's computer.

I'll be meeting with my hemotalogist, Dr. Park on Friday for a follow-up appt. concerning my time in Chicago. Park was the one who initially found the Leukemia in my bones and is largely responsible for implementing the quick action plan in Chicago. If it had not been for him, I could be in a much more dire situation. Then, on Monday, I go back to Chicago for more chemotherapy. Yay! Hopefully, my strength will have returned some by then.

More later...

Day 12: GREAT NEWS...heading home today!!

The doctors came in for their morning visit, and Jonathon is doing so well with the chemo that they are letting us take him home and do the rest of this treatment as outpatient!  We will get to leave some time this afternoon!

YAY!!!!!!!!!!!!!!!!!!!!!!!!!

We'll still need to be extremely careful about him getting any infections - as his immune system is going to be nearly none existent, but at least he can be home in his own bed, snuggling with the dogs (and then washing his hands), and in a familiar environment.  And he won't be allowed back to work for several months yet.  (Speaking of which.... gotta call the FMLA people again today and see if we can FINALLY get the forms we need.... this just shouldn't have to be rocket science to get a stupid form in the mail.)

We'll come back to Chicago every Monday for the next several weeks of induction chemo, but based on how he's handling it so far, those should be ok.

Thank you, everyone for the prayers and well wishes - they obviously are working!  Please keep them up!  We're going to need them over the next 3 years of treatment!

Day 11: Chemo Round 2 (Updated)

Yesterday started and ended with what seems to be normal re-occurring bout of nausea. I don't think I ate much, save for a half a bowl of cereal, some chex mix, and some apple sauce and grapes that came later. By half-time of the Super Bowl, I was feeling better, which was more than I can say for those dreadful commercials this year. $3 million for 30 seconds or less?

I understand that advertising is a tough industry, but if you gimme a reasonable product that's worth standing behind, I'll make it worth your while to either make you laugh about it, or go out and buy it. If Budweiser can make horses play football on a ranch, c'mon....anyone can do anything. Oh, and that 3D trailer at the end of the 1st half. Lame. But 3D is definitely trying to make some sort of comeback.

I did get an up close and personal glance at my Borg Implant port though. It's not quite as creepy as it might seem. I was under the impression however, that needles would hurt less as they were removed and re-installed from the port to clean it. Could've miss heard that minor detail however. In the picture below, you can get an idea of what that port looks like without the needles in there. The port itself is basically the 'protruding-egg' looking thing on the right side of my chests with two needles holes in it.


So far today, it's pretty quiet. They did rotate one of my doctors out temporarily that I really liked. Dr. Stock has been replaced by some Belgian dude, who I can hardly understand through his accent. He reminds me of one of those older medical doctors who you'd swear was on M*A*S*H or something.

'Hawkeye! Just listen to him, he knows what he's doing!'

The chemo sessions went okay today. I received about a 40 minute dose through my IV, as well as a another dose through my spine. I'm getting more used to the those spinal taps....those really aren't so bad. I am finding however, that the more I prepare myself with nausea meds BEFORE actually receiving the chemo, the less nauseous I feel afterward. Which does help, big time. I can't remember the last time I was exactly excited about eating.

Here was a photo of my sister and I on Sunday.


Still waiting on hearing the results with her bone barrow match.




Jonathon out.