Oh, one more thing. I finally got caught up reading my email, but haven’t gotten caught up on replying yet. Something weird’s happened to my outgoing mail server and I’m not sure whose bailiwick it falls into – my ISP or my webhost. So I can read emails, but replying is next to impossible at the moment. If you’ve sent me an email in the past couple of weeks, I’m not ignoring you – just trying to overcome technical difficulties. Feel free to keep emailing/commenting – I’ll get back to everyone when everything’s fixed.
Well, we’re finally back on the net at the new house, so I can go back to keeping everyone up to date on what’s happening in the World of Me.
I made it out of the hospital the Friday before last, though it was a bit touch and go due to the recovering heroin addict sharing my part of CCU. Apparently wherever they go to dry out was full, so they were keeping him there with a 24 hour a day babysitter. I wake up the first morning hearing “Here’s your Ativan… and here’s your methadone.” Lovely. He did okay the first day, but then started flipping out more and more as the week went on. I didn’t get a lot of rest.
To top it off, it was astounding how slow time moved in CCU. Barb stopped by the first morning and then headed off to work. As the hours passed, I figured she must have said something to me about stopping by after work. Maybe she had a meeting or something for lunch. So I slept and I laid there and I waited and I waited. Finally, 5:00 must have arrived, because Barb was back! That’s the good news. The bad news was that she was indeed back for lunch. Rather than an eight hour wait, she had only been gone for about two hours. This time disjointing continued all through the week, with the nighttime being the worst of it all. Especially when the junkie would decide he needed to sweep around his bed at midnight.
So everything happened pretty quickly after that, getting the catheter out, the chest tubes later and eventually being plopped out on the street. I got to come home and recuperate in the new house and it was a very good thing. We were still planning on me overseeing the movers on the following Monday (last Monday), but Sunday night my fever started spiking, so Barb had to be in charge of the move. I must be worn out from all the chemo and such to not be able to follow around movers two days after being released from the hospital, right?
So Monday came and the movers did a fanTAStic job. They were incredibly nice and friendly, fast and strong. If you have to do any kind of house move, give Joyce Van Lines a call. I believe they’re based here in Connecticut, but give them a try if you’re elsewhere too. We had heard lots of horror stories about movers and moving companies, and not a single one of them came true with these folks.
So now we’re going through the whole unpacking thing. Between Barb and Bev and Mary, the first floor’s starting to look pretty presentable. I think I’m finally healed up enough to start lifting things, so I’ll be able to help out more as well. There’s nothing more frustrating to me right now than having all of these people (and mostly women at that) buzzing around me, doing all of this work and not being able to join in. Not to mention getting yelled at for trying to help out. Yes, I’m supposed to be resting and healing, but come on.
On Wednesday, SuperCoop gave me a call. He had the biopsy results, which showed Hodgkin’s Disease in the thymus. He said the best result we could have hoped for would be either an active thymus (the thymic rebound thing) or a thymoma. The one good thing about HD being found was that Dr. Detterbeck was able to remove about 90% of what he found, so that means a good portion of the HD has been physically removed from my body. Plus, hopefully that area won’t light up on PET scans anymore.
SuperCoop told me that depending on what Detterbeck thought about my healing, we could go right into the high dose chemo and stem cell transplant. He said that could be as early as this week or the next.
I thought I was okay with this, but a few hours later, the magnitude of it all finally hit me. Going through chemo again. This time, going through something worse than any of the others I’ve been on. The long road to recovery. The side effects. I had myself a pretty good little breakdown. I’m just so tired of it all. Tired of recovering. Tired of weird things happening to me and thinking it’s probably just a side effect of some drug I’m on. Tired of being a happy little soldier. Tired of fighting.
So now, I’m taking my own mini-break from cancer. I’m not going to be looking in on the Hodgkin’s forum every few minutes. I’m not going to think about cancer. I’m not going to think about the future or the past. I’m just going to be. I saw Detterbeck on Friday and he said SuperCoop can start on the new stuff whenever he wants. I see SuperCoop at 5 on Thursday to get the gameplan. Until then, I’m going to do my best to forget I’ve got cancer.
I’ll still be posting stuff out here, of course, but for the next few days, it’ll more than likely be non-cancer related. Thursday will be here soon enough. In the meantime, there’s plenty to be doing here around the house. Unpacking, storing, organizing, building… and if all else fails, I just sit and watch the squirrels.
So Brian had his surgery on Wednesday. The Doc said it went well and they removed almost the entire thymus. He said the thymus put up quite a fight and didn’t want to come out. Apparently, it is a badass just like Brian. Brian was in a fair amount of pain for the last two days, but you couldn’t tell by looking at him because he’s such a trooper. They took out his chest tubes yesterday and we’re guessing they’ll probably send him home today. I’m going to go visit him soon and hopefully a doctor will have told him he can leave. Yay!
This has become Barb’s mantra over the past week.
Finally time for an update, as we have the DSL all hooked up, though our desks are still in Hartford, so I’m typing this from the floor.
Things have been progressing bumpily with the new house. Our closing went well and we got our intial things into the new place, along with the AeroBed from Hell. It had a two hour leak, where after about two hours you’d discover you’re lying on the floor. Not a very restful night, that first night. The next day we went to Hartford and picked up a matress to sleep on. Much better.
As for the house itself, we had three rooms that needed painting: living room, office and master bedroom. The office and living room went without a hitch. The master bedroom, however…
We started with taking up the carpet in the room. That was no biggie and wound up being a great thing to do. The house has nice hardwood floors throughout, so we figured that’s what would be under the carpet. Sure enough, the floor’s beautiful. We just had to pull up a whole mess of staples and the floor’s taken care of. The ceiling, however…
So Barb decides we need to paint the ceiling. We go down to Benjamin Moore (we decided this house is getting the best paint around, not that Home Depot/Behr crap we used in Hartford) and spend around $350 for our three rooms of paint. Barb and her mom get started on the bedroom ceiling when Barb notices the paint bubbling. She rolls over one of the spots and the paint peels right off the ceiling. Uh oh. Back to Benjamin Moore she goes with an unpainted paint chip and the paint guy tells her it’s because of a chemical that was mixed in with the plaster on houses built before 1950. Calcimide? Something like that. I’ll correct it later when I read the paint bucket.
Anyway, this stuff will just randomly decide to reject latex paint over a period of time and that period was now. He gave us some special oil-based calcimide-blocker primer to put up there, and said that later on we could apply latex over the primer and it would be okay.
At this point, we have rather large patches of missing paint, so we decide I should soften up the edges with some joint compound. It turns out that the part of latex paint that the clacimide reacts with is the water. And what’s in joint compound, kids? Water. I apply a bit to one spot, move on to the next and turn around to see the paint at the first spot drooping to the ground. Once I realize it’s the water, I relay my findings and suggest we just apply water to the ceiling to get the old paint off. Barb’s Aunt Sis comes up with the brilliant idea of applying the water with a paint roller and the fun begins.
Of course, that means we have to wait for the plaster to dry. Then Barb and her mom paint the primer. Then we wait for the primer to dry. Then the paint can actually be applied. So what was originally a full day’s work turned into a three or four day long nightmare. Whee!
But now everything’s painted and we’re anxious to get our stuff moved in. The movers are coming to pick up everything from Hartford on Monday, so Barb has to do a lot of packing between now and then. My surgery’s in about two hours, so I probably won’t be able to help out much. I stopped by the house yesterday and loaded up all of my lumber (a full pickup’s worth) so no one else would have to deal with it and it just destroyed me. Many, many trips up and down the basement stairs.
But now my resting time begins. Wink wink. My thymus gets taken out in a couple of hours and then I get to float on clouds of painkillers for awhile. The whole idea of this process continues to weird me out. I mean, there’s something inside me right now, and in five hours or so, it’s going to be gone. Weeeeeird. One thing I’ve been wondering that I’m going to ask the doc about is, what happens to the space that used to hold the thymus? Sure, we’re all just big bags of goo, but which bits of goo will fill the void? I’m especially wondering about when big organs get taken out, like your spleen. I’ll let you know what he says if I can remember the answer afterwards.
Well, I’d better go get ready for the hospital. Barb’s coming by in about an hour to pick me up. Then all of the fun begins!
Finally, finally, the last typing I’ll be doing in Hartford. We close on the new house in two and a half hours! So, in that frame of mind, I’ll mention that I’ll be out of email contact for the next few days as we wait to get the DSL going at the new place. And I’ll be back under radio silence as far as the site’s concerned. With any luck I’ll have everything back up and online before the surgery (on Wednesday), but if not, one of us will find a way to update you all on what’s happening.
It’s moving time, baby!
Yes, I’m still alive. Wouldn’t that’ve been just my luck, to write a post about how I wasn’t going to give up, then die shortly after?
Anyways, I’ve been under radio silence until I got all of the news straight as to what’s going to be happening next. Plus, we had an AWESOME thunderstorm here last night and I had to shut everything down. This was like West Texas style thunder mixed with rain forest style downpours. Much cheering and supportive yelling was coming from the Whitney Street porch.
Back to the cancer thing. I saw Dr. Detterbeck, chief of thoracic oncology, yesterday morning. Seemed to be a pretty nice guy. He has looked at all of my various exams and originally felt that what was lighting up could be a thymoma rather than Hodgkin’s. Since my itching has come back, he replied “Okay, maybe it’s Hodgkin’s then.” Basically, we won’t know until my thymus is out and ground into a fine paste. Due to the possibility of a thymoma and the fact that this sucker just keeps lighting up on the PET scan, he’s going to take out the entire thymus gland. Otherwise, we could take out a piece, discover it’s a thymoma, then have to go back in and remove it. Since it’s not a necessary organ, it’s best to just remove it all.
The procedure itself is done thorascopically. He’ll make three incisions on the right side of my chest between ribs. In those incisions will go a camera, a cutting thing and a grabbing thing. Sorry to use complex medical terminology here, but I don’t know what you laypeople would call them. I’ll be under general anaesthesia, so they’ll keep me for a little while afterwards to make sure I handled being knocked out okay, as well as make sure I’m not in too much pain.
He’s new to my case, so he doesn’t know I’m a badass.
So they’ll hang on to me until they see I’m handling the pain okay, then they’ll send me home. All of this will be happening on the fourteenth of June. I’ll have to go in at some point before that to get my pre-surgical checkout and I’m going in Monday morning (the fifth) for a chest CT. The Beckster said I should be back to “normal” for sure after about two weeks, at which point he told SuperCoop it would be okay to go ahead with the high dose chemo/SCT.
What does it all mean? Well, the timing of things is still working in our favor, as our closing on the new house is next week. The surgery will be happening almost a week after that. I won’t have the SCT stuff for a couple of weeks after that, so I’ll be firmly ensonced in the new house by that point. Pllus, it means I’ll have a little over a MONTH before I have to do any more chemo. Sweet! I think this will be the longest break in chemo I’ve had since this all started over a year ago.
I’m going to try to go back to work a little bit next week, though the CT scan’s going to throw things a little out of whack. Plus, I’m still fatigued pretty easily, though I’ve been doing better with each passing day. I’ll probably do some half days or something until I’m sure I can make it. Today I had to go to Wallingford to get our insurance and electricity settled for the new house, then I stopped by Lowe’s to look for some stuff to clean the jacuzzi tub with (since that needs to be available IMMEDIATELY). Then I came home and slept for a bit. Three errands and I’m spent. Woof.