Survivors Guilt

I got some good news this week. Thanks to that pesky hospitalization where they were concerned with an infection, I got a chest x-ray. And the radiologist threw me a bone by adding in that my lymph nodes were smaller than on my June chest X-ray. Sweet! I talked to my oncologist, who agreed this was good news, and told me I could stop the med that is most like causing the super ugly rash on my legs. So overall, it’s been a good week for me.

And then, while I’m basking on my high that this is working, despite the issues, a friend of mine from college got some bad news about her cancer. Metastatic color cancer, and moving to palliative care. Got dammit! She actually sees my original oncologist down in Alexandria, and we’ve laughed over that a couple of times.

And I guess this triggered my first real bout of what they call “survivors guilt” in the cancer world. Cause here I am being all happy that mine is showing signs over going away after two treatments (or really, 1.5 bc the second wasn’t finished). Not that it’s been a cake walk or anything, but at least there is a light at the end of my tunnel.

This is where I should take my own advice. I really don’t like comparing experiences. Life is not the Tragedy Olympics, and if it was, IMHO, hodgkins wouldn’t even medal. But, I almost got kicked out of the hodgkins Facebook group for that attitude. Yet it’s hard not to think about how you seem to be getting off easy. 6 months (15 years ago) and maybe another 9-18 weeks. Measuring it in weeks and months, not years. I can still count my cancer-related surgeries on one hand. It’s probably one reason I’ve never really identified with all the cancer “survivor” and “fighter” platitudes. It’s a really sucky year, but then it’s over (hopefully). Chances are I won’t be able to put it out of my mind as easily this time, since it decides to tell me it’s never really over. But it’s not going to kill me.

Happy birthday to me!

On the plus note:

* I’m not in the hospital

* I’m not in need of an enema

* Kyle has a key lime pie 

So things could be worse. 

However, I had planned upon spending the day on the beach. Probably just Sandy Point, a local park on the Chesapeake Bay. However, my bloodwork from yesterday morning put me in the neutropenia category, which means I’m extra susceptible to infection. Given the state of the bay in general, plus the really warm water temps, this seemed like a bad idea. So next up, we were going to go to the conservatory in Druid Hill Park, because it has a palm tree room. But it’s closed on mondays. So then, we decided on the aquarium. Indoors! Water! Like being at the beach under water. Then I realized I can hardly walk up a flight of stairs (bloodwork seems to confirm mild anemia), so all day walking around the aquarium, filled with germy little kids, seemed bad. So we went out for pizza and came home. 

Better tolerated my ass!

So, in theory this cocktail was supposed to be better tolerated than the ABVD I did before. Here is my assessment so far. And just for Caroleene, I had to make a spreadsheet.

Cycle 2 is a big bust

So during my infusion, I had an allergic reaction to the infusion. This is not unusual, and in fact, there are protocols to reduce the likelihood and severity of reactions. But my oncologist viewed them as optional, so we didn’t use them. Well, after this week, I think they will be implemented. I will insist on it.

Ok, so first thing was I started itching terribly during the infusion. I tried to get my nurses attention, but failed. Eventually, someone noticed I was not doing so well, and then there were about 5 nurses around me. I had hives on my arms and legs, and then chills started. They pumped me full of benedryl, and I took a nice nap for an hour or so before we resumed treatment.

And then, around midnight, I started with the chills again. I wasn’t feeling up to finding my thermometer, so I didn’t take my temp. But the next morning, it was 102.4. When you are doing chemo, they get really worried when your temp exceeds 100.4. So, off to the ER.

Two days later, I’m posting this from a friggen hospital room. They did the full admission to give me iv antibiotics while they wait for the blood cultures, which take 48 hours. It’s been about 44 hours, and the signs are pointing to it just being an infusion related fever, not an infection. And I should be released today. Hopefully.

But, since this all happened on Friday, I didn’t have my day 2 infusion, and I didn’t get my GCSF shot, which keeps my white blood cells high and reduces the risk of infection. So now, my white counts are dropping.

Thoughts on my port

So my first port was installed on my right side, about three inches down from my collar bone. So it was a raised lump for about 6 months. And as a stomach sleeper, it was a bit annoying. Plus as a passenger in the car, the seatbelt went right over it. And irritated it.

This time, my surgeon put it on the left. I made the comment a comment about the seatbelt. I assume that’s why he went lower this time. It’s so low, it’s actually in my boob! Just at the top, but definitely past where boob starts. I’ve been joking about this for weeks. “Just shove it in there and move the stuffing around a bit.”

After mulling this over for the past 6 weeks, I’ve decided I love the placement. It doesn’t stick up at all, it doesn’t rub the seatbelt, and it doesn’t annoy me at night.

So in summary, chest port 5/10. Boob port: 11/10, highly recommend!

Update

Someone pointed out it had been awhile. Sorry! No news is good news :-)

My return to the land of the living continued and I had a pretty normal week. Worked all week. Went out last night and almost made it to the end of the show, but sadly, my legs gave out. Not sure if that was chemo or just being too old for standing room only shows. Rob Thomas at the Anthem in DC. Great show! My night was made even better when the lead singer of my favorite local band send me a personal video rendition of a song. It made all the ladies jealous. So sweet. Even though it kind of annoys me that it’s a big enough deal for something like that. But I can’t complain :-) cause it almost made me cry.

In the side effects world, I’m fairly certain my red blood cell count is tanking. With, from what I’ve read, things bottom out around days 14-21, right where I am. Nothing major, just cramping in my legs, elevated pulse, and stairs are really annoying. I’ll do bloodwork on Wednesday and find out.

Also, I have a weird rash on my arms, but I was at my dermatologist on Tuesday (to take care of a keratosis) and she gave me some steroid cream, which is helping. Plus there is this weird blister-like red spot on my palm. She kind of shrugged and said “chemo does that,” with no advice. My oncologist was a bit stumped by it too. He mentioned something pretty uncommon, which made me say “that’s probably it, leave it to me to get the weird thing that shouldn’t happen.”

Other fun over sharing from my appointment:
Me:  If I have to give myself an enema on my birthday I’m gonna be pissed!
Oncologist: What if someone else gives it to you... you know, a gift!
(DONT’T ANYONE GET ANY IDEAS!!!!!)

So yeah... I just admitted how bad it got last time. Going to do my damnedest to not repeat that! I want to spent my birthday on a beach, not laying on the couch bc I literally can not sit.

And finally, not sure I’ve shared this part. The schedule is every 3 weeks. Thursday/Friday and the a shot for my immune systems on Saturday. I think we are doing 3 cycles, maybe 6. I should get that clarified at some point. And then maybe radiation. Still torn on that, but I’ve done the prework so I can. But I figure it’s not too late to change my mind. Best odds with it, but late effects (lung cancer, breast cancer, heart attacks) suck. Kill me now or kill me later...

Happy 4th of July!

So, I think most people reading this are also with me on Facebook and/or Twitter. Those will probably know I’ve returned to the land of the living, and may notice a few recycled jokes below. But for the one of you who isn’t (Hi SG!), these will be fresh.

So yeah, chemo 1 kicked my ass. Literally. I was warned beforehand that “the GI issues alone will not be conducive to being in an office or commuting.” Yeah... I agree with that. The antiemetics these days are some powerful stuff! And they pretty much stop all GI activity. It was so bad, Kyle almost took me to the ED. If I couldn’t handle EMTs finding me on the floor of the bathroom, there is no way that was happening. Although the timing was about perfect, since all the new doctors start on (or about) July 1, and my local ED is a university hospital. They should have paid ME to come in to be a training case for the baby docs. Sadly, I’m sure they would have still billed $5,000 for it. But, I was able to get through it on my own (for about $5), but I’ll spare you the details.  I hope to never have to do that again, but I’ve now been warned to expect this every cycle. Grrr! Will stay on top of it better next time!

And things have now turned the opposite direction, which I was expecting. That’s what they warned me about. I’m now in the “never trust a fart” stage, but it’s far better than it was earlier this week. Thanks goodness I could telework and take conference calls while laying down on the couch!

Well, hopefully tomorrow I’ll be able to put on my big girl panties and go into the office.

This was a heck of a lot easier when I was younger

At least that’s my excuse for why this cocktail, rumored to be better tolerated than ABVD, is kicking my ass. I’m 15 years older. And 45 is not 30, despite what they say.

Yesterday and today are just miserable. I’m trying to work today, luckily from home. I may have to move to the couch bc my desk chair is uncomfortable. I don’t even have any shitty jokes in me today. Biggest issue is similar to last time, only worse, so that comment about shitty jokes, was the best shitty joke I’ve got.