Hai, y'all!
It's been almost seven weeks since I posted my last exmearden update. At that time exme was six weeks out from the August 11 cardiac surgery that removed the large angiosarcoma from her heart (the good news) but dealing with a fractured vertebra and severe pain (the bad news). If you read that last post but haven't read exmearden's blog, you might want to read her last three entries (9/23, 10/12, and 10/25) before moving into what follows.
Just like last time, most of this diary is taken from exme's updates to me. (I get a little pushy with her when she goes quiet for too long.) And just like last time, exme will join us in the threads for as long as she can. So grab a beverage, put on your reading glasses, and let's get caught up. ♥
How are you, exme? I hope you're quiet because you're whacking moles, but I fear you're quiet because you're letting go.
Not letting go. Just wiped out from fighting pain lately.
As you know, I went to Houston last week (just took my passel of morning meds, so I'm good to go for a bit, I think). I arrived on Monday night, did pre-op anesthesia workup and an x-ray on Tuesday, surgery on Wednesday morning. They were able to get the wires out by going into the bottom 2 inches of my original heart incision and pulling from what was effectively the middle of the wires.
The wires were actually just laying on the surface of the heart, under a small dime-shaped plastic flat button that has been sutured on, so there was little fear of any scar tissue actually embedding the ends of the wires. All of this came out when Reardon described what he was going to do right before the surgery. It would have been helpful had I (or the docs here in Seattle) known that - I had assumed wrongly that Verrier here in Seattle had contacted Reardon before he tried to find the wires on October 13, and that was not the case. I just don't understand these docs at all and their reluctance to communicate.
They discharged me, luckily, on Thursday around 6 pm. The ride back to the hotel (about 12 blocks) was excruciating. It was surprising to me how painful that incision was, and continued to be through Friday. I had to bump my return flight out to Friday just due to the fact that I couldn't tolerate much pressure on the incision - it's right under my breasts in the middle at the bottom of the sternum, and bending and pushing up out of chairs and such was too much to handle even with pain meds that first post-op day. By Friday, though, I was much better.
This trip home from Houston, unlike the last, was completed safely.
The flight was pretty uneventful. I'm still on the same course of meds - 30mg Oxyccontin twice daily, Dilaudid 4 mg every four hours, and Dexamethasone now down to twice a day.
The Dex is causing problems, though. I have (since last Saturday) pretty severe edema in my legs, ankles and belly. My belly is so bloated that it's hard to breathe and eat. The edema in the ankles and legs is what my visiting nurse says is a +3 edema up to a 4 at its worst.
In trying to deal with the edema, I have to find an actual cardiologist who will manage my heart care from here on forward. The cardiac surgeon here in Seattle (Verrier) doesn't want to take this on, and I currently have no primary care physician beyond the oncologist. She also doesn't want to handle the overall meds (which were initiated by the Pain Management team at Seattle Cancer Care Alliance, a separate team from the Sarcoma team my oncologist is on). So in the interim, I'm seeing the pain management folks on Monday and trying to self-manage both the pain and the edema until then.
Once again, it's a hassle of triangulation. The meds are about 60% effective for around 70% of the therapeutic range of the drugs, so everything starts hurting just past halfway through the time between dosing. At that point, I really have a hard time walking, as the pain is bilateral in both hips and legs now.
I go in to see the orthopedic surgeon (Michael Lee) on November 16 and will have an MRI on my spine prior to that. Not sure of course what the next steps are, but something will have to be done, I think, before chemo, just to relieve the pressure on my nerves. I really don't want to start in on chemo with this level of pain.
We talked about pain management for a while, and then this:
But I'm not giving up. Just tired and my mind often doesn't wrap around big thoughts lately - I'm a short term thinker right now and a mouth breather! heh (inside kid's joke). Btw, it's an absolutely beautiful mostly blue sky day here in Seattle. It has been for the last few days tho rain has been forecast. The birds are singing, the sun makes this magnolia tulip tree off my deck glow green in a magical way.
This is why I keep going. Each day brings a joy still (if I ignore election returns, that is...)
(Still a political animal, huh, exme?)
Kelley, if you want to do a diary update for me, feel free. I keep trying to sit down and compose something, but it just doesn't come out. Well, at least when I try to write directly. Replying to email is somehow easier. Not sure why.
My weeks now are weirdly dotted with visits from Visiting Nurses; one from Swedish Hospital VNA who does the wound packing replacement on the wound vacuum I have attached to the abscess, and one from Providence Hospital Infusion services who does my port needle replacement once a week and my blood draws. No, one VNA service cannot do both. Go figure. This will go on as long as I have the wound vac on, which may be another four weeks.
If I can get off the dex, and onto another anti-inflammatory that doesn't bloat me up or is not a steroid, then perhaps the wound will heal faster. So that will be what I am pushing for on Monday.
Okay, need to lay down. Once again I've done a medical news dump...apologies. Hopefully you can tell that I'm still engaged in the fight.
A little later we talked about this update. Me: Tell me if I'm wrong, but it seemed to me that you enjoyed the comment threads in the last update I posted on DK. If so, let's do another one some day or evening when that sounds like fun to you. As usual, you mostly wrote the update yourself; I'll just buff it up and blockquote huge parts of it. I don't need much time to prepare, so it can even be a spur of the moment thing.
I did enjoy the comment thread. Probably can't get to everyone, but I'll do my best. From here through the weekend I have no doc spots unless something comes up, so I'm mostly vegging and napping.
One of the things folks often say is that they are sorry I'm "suffering". It may be strange, but as yet, I don't see it that way. Maybe I will at some not too distant point in the future. Sure, there's pain, and it's a bitch, and I'm fighting against this downhill trend which is exhausting and stressful and yes, scary. I don't know where this takes me or if I have a road out yet, and back to better mobility and a better day-by-day. Until I have scans and further evaluation, the stress of the unknown - does that ache or pain signify more cancer spread, have the nerves in my leg and back been so damaged now that they won't come back if something is attempted, will the chemo actually work when I start back on it, will it be too late once I start back on chemo, where else has this stuff gone? All these questions course through me, but they are not so insistent at this time as there is little I can do about the situation until I heal these incisions and wounds. So mostly I let it go.
But as for suffering, I'm not. I hope that people understand the distinction. There are many cancer patients who are suffering - both mentally and physically. For some reason, suffering implies to me that there is some kind of constant wave of .... mental hurt perhaps? And this is not what I'm experiencing. I suspect I'm only clouding my attempt at describing what I feel. But if I can assure folks of one thing - that I'm not suffering right now, just in pain and that there is a distinction, well, that will make me feel better. I don't want pity - not there yet, never there, I hope. I firmly believe most folks have the ability to handle what is thrown at them. It's a choice and it is all dependent on one's perspective and perhaps, one's knowledge of oneself. And, of course, I have most of the things I need - family and friend support, a roof over my head (for now), insurance coverage (which will soon provide more fun and games as they are moving me to Cobra starting this month. I've just been laid off my job and now Cobra will kick in for 24 to 29 months should I live that long. All my disability pay will stay intact and they are raising the monthly amount to cover the Cobra payment, thank heavens).
Shall we have pizza again?
That would be great...Friday night lights!
Last, exmearden's feelings about this community:
Love you very much, Kelley, I hope you know. I honestly, honestly don't think I would be going through this as easily (and that's a weird word to use, but I do have it easier than many with cancer) were it not for the ongoing and attentive support of our community on dkos. I can't express that feeling enough. And it's an incredible feeling - the depth of caring and love from what others outside the sphere deride as merely an online blog community has been greater than most of the physically tangible, locationally near communities I've been involved with in my life.
How does one explain such a phenomenon? I don't know. I just know that I soak it in and it's healing.