I'll just blurt it out: my cancer is spreading and Doug had another complication.
Last
month Doug finally seemed recovered enough to go ahead with the second part of
his hybrid ablation procedure. Eight
hours on the table it was slow going and he didn’t immediately stay in normal
rhythm. Not unusual as his heart had been pushed, pulled and burned. They sent
him to CICU with plans to cardiovert him the next day. That procedure went well
and his heart was beating in perfect sinus rhythm. They declared him the healthiest
patient in CICU and he could be bumped to a normal room if they needed the bed.
I’d been sitting in a waiting room
chair for eight hours and sleeping in a hospital recliner at night and I really
wanted to go home for the night. However, something kept nagging at me to stay.
I really wanted Doug to tell me to go home, which he did until I voiced my
nagging feeling, wince he said, “so stay.” I really wanted him to be more on the
go home side. I whiffled and waffled but decided to stay the night. Several
times I awoke and saw him peacefully sleeping and his heart monitor beating a
nice true sinus rhythm. Around 6 am I woke up, saw he was fine and chided
myself for thinking I had some premonition, but was glad I stayed anyway.
A
little while later the nurse, Nick, came in and helped Doug manage all his
tubes and wires into the bathroom. At
one point he asked Doug if he was OK, which he does get asked a lot in the
hospital, and he answered that he was fine. “OK” said Nick with a funny look on
his face. Doug comes out of the bathroom and as he’s walking to the bed all of
the sudden makes a giant lunge forward landing mostly on the bed and was out
like a light. Nick, my hero of all time, dragged him all the way onto the bed,
calls a code and slaps leads and heart pad stickers (used instead of the old
paddles as seen on TV) on Doug. I back into a corner to give everyone room and
slowly his heart monitor starts back to life and Doug opens his eyes. (He later
told me that in his mind he never passed out and was shocked to find all these
people and machines had appeared out of thin air in his room.) “You OK Mr. Holstein?” someone asked. “Yes”
Doug answered unaware he had scared the shit out of me and everyone else in the
room. Now, instead of the nice even sinus rhythm, his heart was doing a waltz like
123, 123 beat.
Everyone was standing around watching him and watching the
monitor trying to figure out what had happened. Then my dear sweet husband
looked at me and said “I feel like I’m fading away” and with that his heart
monitor flat lined, he contorted, turned blue and became unresponsive. The room
filled up with even more people, drugs were given and 23 very long seconds
later his heart monitor again started up, this time in a more normal rhythm. Basically,
he had hit Ctrl/Alt/Del and rebooted his heart, or at least that was one way to
look at it. At rounds a few hours later
it was decided that they would put in a temporary pacemaker and then implant a
permanent one on Monday. It wouldn't do anything for his AFib, but would prevent anymore heart reboots....So much for a one or two night stay in the hospital,
it became nearly a week in CICU.
We did get a few weeks of recovery
and breathing time as Doug’s incision healed and he was under strict
restrictions not to lift his left arm above the shoulder so as not to dislodge
the wires now embedded (actually screwed) into his heart muscle. No heavy
lifting and still no driving. Good thing he has a wonderful wife to do all the
hard work…. Well, good thing we hired a wonderful young man, Matt, to come 3
times a week to help! Walking dogs, cleaning littler boxes, moving stuff around
the house not something either of us are in shape to do. However I’m still chauffeur
to Occupational and Speech therapy four times a week, various weekly doctors
and vet appointments, grocery and pharmacy runs and even a trip on his scooter
to get it inspected. It was a fun ride, but I do think our riding days are over,
so I kind of allowed myself to enjoy it as a goodbye run!
I do admit I’m feeling pretty much
alone. Good people offer to help, but I’m so overwhelmed with everything I
don’t even know how to tell them what I need. So often I feel like I’m at a
breaking point, however, I have been able to get up each morning and put one
foot in front of the other, or at least I had been till now.
My recent scans confirmed what they
had suspected but couldn’t be sure of from the last couple of scans, the cancer
has now spread to my lung and lymph nodes. The good news is I no longer get the
Falsodex shots. It was the anti-estrogen I’d been on for the last five years
and was given as two injections deep into my behind muscles. And when I said
deep, the needle is two inches long and the medicine is really thick. I always
pitied the poor nurses who had to inject me, I know their hand hurt trying to
push it in and I was beginning to wonder how much more my rear end could take
of this stuff! So the new treatment is a daily dose of an aromatase inhibitor,
similar to one I took several years ago that did have some unpleasant side
effects, along with the monthly injection of bone medicine. At least that is a
little injection just under the skin. In addition we'll talk in a
couple of months about a clinical trial opening up soon. So I’m at that point,
retry old stuff and seek out clinical trials. My doctor put on an optimistic
front, she still feels like the cancer is slow
moving, but learning that it was in my lung and lymph nodes was a real blow to us.
I started the new medication that
night and have spent the last few days wanting nothing more than to crawl in
bed and sleep. I can’t say for sure it’s not depression, but it can be a side effect
of the medication. I’ve also been really achy in my joints and back which is
also a side effect. Now I can try and tolerate feeling like this for a while as my body hopefully gets
use to the medication, but long term will definitely be a problem.
Pokey is better than aggressive, but the end result is the same and I just have more time to know about it. Don't get me wrong, I am grateful for each and every day, but with all we have been dealing with lately, none of this is any fun. I'm OK with the fact that there won't be cure for me, everyone dies of something, and I'm not really looking to do everything to extend my life, I just want to live the life I have left as well as I can. My goal is to die as happy and healthy as I can with my husband at my side holding my hand. I just need to figure out how to do this physically, emotionally and financially....
