Wednesday, April 30, 2008

Well Done Please, With Grill Marks if you Can...

Today was my first day of radiation, yippie!

So, I walked into a nice big room with a machine like this one (its the same model, a Varian EX21):

Looks like something out of a bad sci fi movie, doesn't it? Anyway, I'm there barely a half hour - They run some last xray checks, the doc OK's it all, and then its about 10 minutes of listening to the machine buzz.

Now the bad news - They don't have an afternoon slot open for me yet. So, for now, I go first thing in the morning at 6:30AM. I'm pretty pissed off to be honest, as one of the selling factors was being able to do this at the end of the day (and close to home) so I don't have to worry about tiredness during work.

They are going to see if a lady at 3PM can switch with me. I sure hope she can, otherwise I'm going to get pretty PO'ed with Paoli.

Friday, April 25, 2008

Tattoo Man

It was awesome, I have a trio of great, intricately designed dragon tattoos on my body now.

OK, maybe it wasn't dragons, but three blue-black dots. If you stare at them long enough, they look like dragons. Maybe you're not looking hard enough. Perhaps if you were cooler, you'd see dragons...

Today I had my simulation setup for radiation. As part of that process, you get three permanent tattoos on your midsection right above your bellybutton - One in the middle, and one to either side of your torso. The idea behind 'em is to make certain you are lined up exactly the same each time you go in for radiation treatment. In addition, they took some detailed scans of my body which my doc, techs, and the computer will map out to determine where the radiation beams will hit, and how they will setup shielding for important areas, like my heart.

I'll receive 3600 Grays over 20 days (four weeks), starting next Wednesday. What to look forward to on this one? About 6-8 weeks of flu-like fatigue, a massively bad sore throat... And the end of cancer treatment.

Sore throat... Here's hoping for an ice cream cake for my birthday in May!

Tuesday, April 22, 2008

Two Down, Eight to Go!

Just got my scan results back -- Its CLEAN!!

Per Dr. Szarka, my CT scans came back great - I no longer have any nodes popping up in my neck (I had some scar tissue three months ago), and my mediastinal (chest) mass - Again, scar tissue - Shrunk another inch or so to 8.2cm x 5.2cm.

The PET was great too - Nothing at all, except a hotspot in my right mid abdomen. Dr. Szarka immediately cleared that up that it was DEFINITELY not lymphoma, and probably just stool or a intestinal flareup. Forgot to tell her while on the phone that I had some stress-related "issues" that morning, so her reason kinda fits like a glove.

Her word on the scans: Wonderful. I'll take that!

I see her again in June, but I won't have any follow up scans for about 5 months now (due to radiation requiring additional time to heal up). Good stuff!!!

I estimate I have another 8 scans to go in the next 5 years before I'm done and considered "cured" (although that's for all cancers; Hodgkin's usually doesn't require that long and my onc already thinks this is the case).

Sunday, April 20, 2008

Keeping the Fingers Crossed...

Well, tomorrow I get my first post-chemo CT / PET scans, then our simulation run for radiation on Friday. What's it all mean?

Well, as for the scans, its pretty straightforward: If my scans are clean, that's a great sign and we start rads the following week. If its not clean, we head to either Fox Chase or Penn to begin salvage chemo (also known affectionately as savage chemo) and prepare for a stem cell transplant (as the "easier" chemo failed). Needless to say, we're rooting for the former option (and its the most likely scenario).

However, "scanxiety" has kicked in full-force. I'll know on Tuesday how things are. Say a little prayer tonight for me, if ya don't mind!

Thursday, April 17, 2008

Yay for Work.... Whaaat?

I'm starting to question my own sanity, as I'm actually looking FORWARD to returning to work. Per my oncologist (and my short term disability company), I'm scheduled to go back in two weeks on May 1st. The brain cells are starting to function again -- Not 100% yet by a long shot, but I'm not sleeping 16 hours a day anymore either.

My only worry is how badly rads will impact me, as I really don't want to take more time off. We will see!

Better... But the Nerves Still Suck!

I ended up calling my onc, and she offered to have me come in and she'd check my neck. She took a peek, and while there's definitely something there... Its not lymphoma. She's chalking it up to scar tissue from my biopsy, or more likely my weight gain *cough cough*

Well, it sure as hell beats the alternative. In any event, off to our testing next Monday!

Tuesday, April 15, 2008

Don't Count Your Chickens...

I'm having a bit of a rough week.

Ever since my last chemo, the right side of my neck (where we first discovered this lovely disease) has been a bit puffy and sore. Puffy scares me, sore confuses me. In any event, I almost feel like calling my onc tomorrow to ask if I can pop in for a quick check, but my guess is she will tell me to wait for the CT / PET scans coming up next week.

I just don't think I want to wait until next week without some form of reassurance. Is it probably nothing? Sure. I never felt sore or pain before when it was there. But knowing what the consequences would be... I'd rather have my doc take a peek and if she feels anything, I can try to move scans up and such.

Oh, and it looks like we're planning to go to Paoli Hospital for radiation. We really like the doc, and the care we've received thus far has been top-notch. Penn will definitely be my destination God forbid I relapse, but for now I think staying at my Fox Chase affiliated local hospital is for the best.

We're also going to go with late afternoon rads rather than mornings I think. I read somewhere that it works out better for working, as if I have it done in the morning, I'm more likely to feel extremely tired during the workday.

Thursday, April 10, 2008

Starting to Wake Up Some...

Well, following about a week of continuous hibernation, I'm starting to come to at this point. Still very much out of it, but feeling a lot better (short of the usual bone pain from Neulasta). Happy that should be the last shot of it.

What's on the gameplan? Well, the end of next week we should get our next PET and CT scans, and the week following I'll have my radiation simulation - This is the process where they actually map out and program the machine on how they will give me radiation (down to the millimeter). They will set up shielding for vital stuff like my heart and lungs (as much of my lungs as they can, anyway), and get me ready to rock.

Assuming we're good to go, radiation will start the week of the 28th -- Which should also be my first week back to work hopefully (yay!). Why am I going back before rads are done? Because rads aren't really supposed to start taking a toll until week 3, and if I need to I'll go back out then (partially or completely). At least it will give me a couple weeks to get caught up at work.

Rads are scary. While chemo isn't a pleasure cruise, ABVD (my chemo regimen) is relatively benign with long-term side effects. Radiation has the gambit of possible risks - lung cancer, thyroid damage, heart and artery damage. Better rads than not (since we have hodgkins NOW), but its the part that gives me some pause.

Where am I getting it done? Still don't have a clue. Do I go to Paoli, where I've met the doc (she trained at Sloan-Kettering, which is a well-known and respected cancer center), or HUP (Hospital of the University of Pennsylvania) which is a national cancer center, well-known and respected, and with a brilliant young doc -- Who I've never met.

I swear, this friggin thing is going to come down to a coin toss, you watch...

Monday, April 7, 2008


Well, my last chemo definitely put me into sleep mode. For the last three days, that's pretty much all I've done. Just as an example from yesterday:
- Woke up at 11AM
- Took my meds, back to sleep by 11:25
- Woke up at 5PM
- Have dinner
- Back to sleep by 11PM

My jaw feels like how it did after my early treatments, and I'm just achy. Also, my throat feels really tight (did I mention I'm whiny?). However, it looks like we're coming out the other side of things.

On Saturday, we went to Mechanicsburg, PA (about 1 1/2 hours west) to pick up our new puppy, McKendzie. She is drop-dead gorgeous. The breeder, Jill, was outstanding and we are so thankful to her after our pet-store experience a few months ago. We owe her alot.

I'll have pictures up shortly. In the meantime, Suzanne and I are in a real bind about where we are going to go for radiation. We have such a good feel for our Paoli doctor, but obviously HUP (Penn) is such a good name.... Then there's the issue of the 9 year old equipment (which Dr. Szarka doesn't think is a big deal - While she wouldn't tell us where to go, she said that shouldn't be a factor).

My brain is still mush, but I'm hoping to return to work in a few weeks. I'll probably call the boss and let her know that's my plan if all goes well (but I want to let her know the gameplan on where I'm going for rads).

Thursday, April 3, 2008

Cycle 6B (Treatment 12) - MISSION ACCOMPLISHED!!!

Well, that's it for the chemotherapy regimen known as ABVD. We brought a Thank You cake, a tray of cookies (which were AWESOME), and my Mom came over from Jersey to spend some time. It was great.

Did the usual routine, and got lots of hugs from the oncology nurses. The whole team over there at Paoli ROCKED. I couldn't imagine better care.

Speaking of, I think Suzanne and I have decided to get radiation done at Paoli after all. I may still be out of the office on disability when it starts (which would make HUP more difficult). Also, I may be able to arrange a modified schedule working mostly from Valley Forge for a few weeks to help transition (and while I'm getting treatments). We will see!