Monday, February 25, 2008
In any event, I think we've started the downhill slide with treatments. As I've mentioned before, these things are additive: Treatment 2 will be worse than Treatment 1, since its a combination of 1 and 2, etc. Well, I haven't been this weak or achy yet, so the annoying effects of treatment are definitely picking up. However, here's hoping it whacks any remaining cancer out of my system.
On the puppy front, we found a small breeder in upstate PA who was VERY sympathetic to our story, and seems like the kind of people we'd want to deal with. They have a few wheaten terrier pups that would be available in six weeks that we may decide to look at, giving the current situation a little time.
Sunday, February 24, 2008
The vet wasn't sure what (or if) anything was wrong with him either, but wanted to keep him overnight to get some xrays and bloodwork. Well, it turns out he had pneumonia, and didn't respond to antibiotics. We got the call this morning that he died.
My daughter is devastated, as are the rest of us. Talk about highs and lows this week.
Thursday, February 21, 2008
So, why do I have Gunney Hartman yelling in my blog? Because after tons of good news, I'm still freaking myself out (probably for no better reason than being obsessive compulsive). Let me explain:
First, the news that has me worried:
- On the official Radiologist's report for my PET, it says there is "slight to absent uptake, same as background" in my chest still. Per my oncologist, it's a hedge on their part because they can't really see anything, as it is blending in with the chest scar tissue (and probably is part of the scar tissue). There's also a 1.2 cm lymph node still in my right neck, but there is zero PET uptake anywhere in that region (meaning anything that's there is scar tissue, normal lymph nodes, or dead cancer).
- My chest mass hasn't shrunk as much as I'd hoped. It was larger than originally thought (it was 12x9cm, not 10x9), and shrunk down to 8x6cm. Its about a 40% drop, but we still have a grapefruit in there.
Now, onto why it probably doesn't matter (which Suzanne will tell you is completely the case and I'm paranoid. She probably enlisted Gunney Hartman above. Evil woman ;-)
- My oncologist has no worries about that label on my PET report - Her evaluation is that its nothing. My PET scan says we are NED (No Evidence of Disease). We're cancer-free at the moment.
- I asked about getting the port out before our vacation in July. She said yes - She chemo'ed me with curative intent and believes at the end, based on these scans, I will be. No reason to keep the port around. If she was spinning the confidence I'm good, there's no way she would have agreed to that. This is probably the most important factoid for me.
- Mass doesn't bother her, as we're going to radiate it, which will shrink it some more. Anything in there will be dead (if there's anything left at all).
- She is stating we are looking at a 90 to 95% chance we're cured now, following these scans (of course, everyone has a 0 to 100% chance of relapsing, it depends on the person, yada yada. But statistics dont lie).
Her POV is we're either cured or will be by the end. That's some pretty nice info from an oncologist who is known (both from my personal experience and others I've asked) to be a no-BS kind of doctor (another reason we love her).
So why am I so friggin spooked? Honestly? If I think about it some, its probably due to the fact that we're approaching the end of treatments. Right now, if anything is in there, chemo is going to kill it if it decides to show its face. In less than two months, there won't be any more chemo, just radiation. Then a few weeks after that, there will be nothing but follow-up scans. That really is a scary thought. I need to get out of this whiny mode. I need Gunney Hartman to beat the crap out of me and remind me I have b*lls ;-)
Thank you all for the support you're giving me. We're near the end friends, and we can get on with life. I'm going to have scanxiety every 3 months for the next year, then 6 months the year after that. But I think we're good, just have to get over this silly nagging thoughts.
On a side note, the chemos are really starting to hit me kinda hard now right after treatment. I'm weak as hell, and TIRED. Only three more to go, but that "additive" effect is definitely kicking in
Well, I'm going to worry about something else, of course! Disney will have to wait.
I'm really curious about how much scar tissue is left inside. I'm hoping SuperOnc will let me get the port out in May following rads - We're going camping / hiking in Maine this summer, and I get to backpack the 3 year old when he gets tired of walking. The strap will be sucktastic if its over top of the damn port. Some oncologists are OK with this right after treatment, others will make you wait a year or two (in case you have a relapse).
I'm also getting nervous about the end of treatments. I have a clean PET, and I'm getting chemo for any of the little buggers should they try to multiply again. When treatments end, that's no longer the case, and a single friggin Hodgkins cell could start its process over again. That's scary stuff, and will lead me to needing a Stem Cell Transplant.
Speaking of, I'm also thinking about my Philly Hodge Buddy Bekah, who's back in for round 2 of the ICE chemotherapy protocol (its used pre-SCT, and makes my ABVD look like weak Kool Aid in comparison). Here's hoping it goes easy on her.
Tuesday, February 19, 2008
- Butch, "Pulp Fiction"
Can I get a HELL YEAH?
SuperOnc called this morning (as luck would have it, while I was not in range of a cell tower on the train) and left me a message - The PET is negative. We are clear of the no-good Hodge!
What does this mean? No, it doesn't mean we get to stop treatment and call it a day. PETs are hyper-sensitive; Inflammation from a cold could actually show up on these. However, a couple cells or a single one would not appear -- And it only takes one cancer cell to survive the chemical holocaust I unleased upon it to re-start this fun all over again. So, we do our last two cycles of chemo and the radition to be sure. I'm OK with that - I'd like to avoid this pleasure cruise in the future.
She also mentioned that I have some thickening of the chest wall, and that this is expected (just means my PET scans have a nice light shadow in the chest area). What she didn't mention was how far my chest mass reduced with regards to the scar tissue, but I guess we'll worry / hear about that on Thursday.
Right now, we're just enjoying the dance with NED (No Evidence of Disease in cancer parlance).
Oh, and a side note, we got a dog. Lazy bum is lying down next to me now.
Wednesday, February 13, 2008
I got pretty pissed off at work yesterday. A co-worker of mine, who knew I had cancer and was undergoing treatment, sat down right next to me in a 3 hour meeting with some rediculous kind of toss-out-a-lung cough. Seriously, he was hacking one up every 30 seconds. Now, to make matters worse, he's on my left and the projector is set up for the right - Meaning we're turned in that direction, and he's hacking down my back. Partially my fault for not saying anything, but a lot his fault for being an idiot on the subject.
What makes matters worse is if I catch something now, it could potentially appear on my PET scan due to any inflammation. What does that mean? It means I could have a Complete Response but not look like it on the scan. Grr.
What a busy two weeks at work - Not that I'm upset by that. I appreciate that my boss has me WORKING and not just giving me busy work. Hell, I'm just happy to be working (dear GOD, did I just say that???). However, I'm home today -- Neulasta is a wonderful, evil thing. Its wonderful in that it keeps my counts nice and high so I can take my train every day to work without worrying about getting hospitalized. Evil in that I get two days of really bad bone pain, which started last night. Percocet to the rescue, but I can't go to work on that stuff.
Other than being really busy, everything is same ol same ol. Sadly, I'm feeling a bit lonely since most of my family and friends stopped calling or visiting constantly (Yeah, that's right - You know who you are, guilttrip guilttrip guilttrip). If you were worried I'd be annoyed - Don't be. Give me a call, pop me an email. Speaking of, I'm adding my email to my profile, if people want to contact me with questions or info they don't want to leave as a comment.
Suzanne and I are trying to figure out what we're going to do for vacation this summer, once the evil Hodge is all dead and treatment is over. Right now, the plan is to rent a pop up and head up to Acadia National Park for a week -- We loved it with Sara 5 years ago, and we figure Steven will like it too. Of course, laying on a beach in the Carribbean wouldn't hurt either!
Any ideas for stuff with a 3 year old and a 12 year old?
Thursday, February 7, 2008
Chemo drugs wouldn't be so bad if they weren't so chemo-ish...
Well, we had our latest treatment today. I reviewed the results of the early checks with did for possible Bleomicyn toxicity (which can damage the lungs, and require pulling the drug from the chemo regimen):
- Dematologist: The "cyst" things on my hands won't hurt me in the long run, and shouldn't spread off my hands. With a wink, she let me know that its a personal decision to either deal with it, or remove the cancer drug (Guess which answer I went with?).
- Pulmonary Function Test: My lungs are working BETTER than before. We have no worries at this point (meaning we're not getting lung damage).
Treatment itself went fine, no issues in the office and we were out by around 2PM. The treatments are REALLY starting to cause some serious tiredness and weakness for me. I napped about three times today - And its making me wonder if Fridays are going to become "off from work" days rather than "work from home" days for the last two months.
Really can't wait for the PET scans, I need to know this crap is dead. Good news is that Dr. Szarka does not wait on stuff - She'll give me a call and let me know where we stand when the results come in. This is the serious one, boys and girls -- If this test is clear, we're in VERY good shape for the long-term. Doesn't mean that if its not 100 percent clean I'm dead, but it a much better prognosis if we have a Complete Response.
When I was in college, if I aced a test or major project, I'd come home and blast "The Humpty Dance" by Digital Underground. Partly because I think that's one of the most cocky songs ever made, but also because it made my roommate nuts (Sue wasn't a fan either, but she didn't give me issues with the A grades). I have that song locked and loaded in iTunes -- I get that call, the first thing I do when I get home is play that song. Booya.
I'm going to try to get Before and After copies of the PET scan, to show you what it looked like. Time for bed in the interim, see ya all later!
Tuesday, February 5, 2008
When this fun adventure started, I received a bunch of tests: A chest x-ray, a CT scan, a PET scan, a PFT and a MUGA scan. I'll run through these for those of you who don't know what they are (thank Melissa for pointing out that I may have picked up some medical lingo).
Chest x-ray: If I need to explain this, feel free to leave me a comment so I can ridicule you with the rest of our friends, haha.
CT Scan: CT stands for Computed Tomography. In my case, they will check me from neck to hips, looking for any enlarged lymph nodes. This may pick up some scar tissue on the scan, but is important in seeing that everything that was normal... Still is.
PET Scan: This is the big one. This is a VERY sensitive test that involves me getting a radioactive dye injected into me. This dye is actually a sugar, and cancer cells apparently gobble this up at a higher rate than regular cells. Areas of "uptake", or where the sugar is eaten quickly, are usually cancer areas (or the bladder or brain). This is a VERY sensitive test, meaning its also prone to false positives. We want this one clear though, its the most important one for trying to predict how treatment is going.
PFT Test: This is my lung test. One of my drugs in the chemo cocktail can cause pulmonary fibrosis. This would be a bad thing too, so they want to make sure my lungs are still functioning right. I breathe a few times in a big tube, and they tell me how good my lungs are.
MUGA Scan: Another of the drugs can cause problems with my heart. Similar to the above, they want to make sure the ticker is still going strong.
Its going to be a busy two weeks. I'm really hoping for a CR based on the scans above (Complete Remission). Best chance at cure, should we get that now.