When you're a longtime member of this community AND a popular frontpager AND you have a deadly form of cancer AND you take the community along on your journey, folks get mighty nervous when you stop writing. Our love and support are huge blessings to exmearden ... but they come with a price. She's waging war against a powerful enemy and, while she doesn't expect to win the war, she hopes to win a few more battles before she's done. That takes everything she's got.
What follows is an update written at her request and with her blessing. I'll try to answer your questions, but please understand if all you get is "I don't know" or "I can't talk about that".
I believe, with every fiber of my being, that exmearden will win this current battle and come back to tell us all about it.
On August 11 - less than six weeks ago - exme had open heart surgery in Houston to remove the primary tumor, a risky gamble that paid off. She recovered so well that she was able to fly home to Seattle two weeks later, causing great joy for the hundreds who love her.
Little did we know what happened during that trip home. Exme was positively radiant in late July at NN10. She had had intense chemotherapy to shrink the tumor in her heart to a size that would permit surgical removal and then stopped chemo for a few weeks to allow her immune system to recover before going to Houston. Yet while the surgery was a success, new hell was a'brewing in her lower back. As you can read on this blog post, exmearden suffered a compression fracture of her L4 lumbar vertebra somewhere between Houston and Seattle. The cause of the fracture is almost without question a tumor. The pain is extreme. The resulting disabilities from compression of her nerve roots if the vertebra isn't repaired might include paralysis, as well as intractable pain.
If you've been following exme on Facebook, you know that she was admitted to the hospital last week because the pain and leg weakness caused by the fracture had become intolerable. You also know that, by Thursday, they'd managed to relieve 80% of the pain and were transitioning from IV meds to oral meds so she could be discharged by the weekend.
Exme was discharged on Friday after receiving two radiation treatments of the spinal tumor and scheduling more for the upcoming week. Her pain at discharge, on oral meds, was down by 90%.
Once home, she suffered a bad fall. On the stairs. I'll let her tell you how the rest of Friday went:
Unfortunately, though I went over and over with the physical therapist on how to climb my internal stairs at my house when I got home today, the minute I hit the second stair inside, I started to lose my balance. My kids tried to catch me, but I'm such a dead weight that it was impossible. I twisted and landed on my side - not good. Big pain. I had to have them lever me to my front so I could stabilize, and I realized that I again torqued something in both my back and my left hip now and all the way down my thigh to my left knee - the good leg, such that the pain has really ramped up again. I fear that I've reinjured further that L4 vertebrae and also messed up my left hip and somehow the pelvic area, where I seem to have a lot of pain right now, even with all the meds. I'm watching for swelling in the stomach area in case I did something internally; so far nothing and no fever either. Blood pressure is fine, though pulse is high at 100 with the pain.
I'm keeping the meds going for now and laying on ice under my left side. I've made what is probably a bad decision, but I just want to stay in bed for at least tonight in my own home with my dogs and my kids. I will likely have to go back in tomorrow and be readmitted for yet another attack at the pain, and for a new CT scan to make sure the dynamics of the spinal vertebrae haven't changed. The radiation markings need to be spot on and if the structure has changed, they will have to redo the measurements anyway for more radiation on Monday. This sucks, unfortunately.
The more long term plan is that I have this radiation, they taper me off the meds to see if the radiation is cancelling out any pain from growth of the cancer in the vertebrae. After they figure out the answer to that, we go from there. My orthopedic surgeon is going to contact the cardio-thoracic surgeons in Houston and discuss with them the viability of me having back surgery to stabilize the vertebrae, which too badly compromised to hold up without some action, even after the cancer (if the cancer) is beat back by the radiation. The best option, he said, is to stabilize with scraping away any detritus that has found it's way toward the nerve root, decompress the areas, possibly put pins in and perhaps a plate, and see what is going on with the nerve root. That will move me away from possible paralysis, which is a danger. If it becomes bilateral, it's a real problem, and I fear I may have just made it bilateral in both legs by this fall a couple of hours ago.
If I'm not a viable candidate, and have to go on chemo first (which I need to to stop other metastasis elsewhere), then I'd have to eventually wait to get my immune system and healing ability built back by another time off chemo. But that would be a couple of months out and the spine may not wait for that to happen.
You probably know a great deal more about this spine stuff than I do and the ramifications of spine surgery in that area - they often have to go in through the front and the back to stabilize the spine, which involves a two-day staging surgery over a couple of weeks. The blood loss has to be closely monitored, so I'd have to be off my Lovenox for a few days which increases the risk of clotting and pulmonary edema, more critical in cancer patients with the thickness of the blood. The recovery time to mobility, if it works, can be long.
The orthopedist asked me, "do you know if your prognosis with this cancer would make it worthwhile for you to undergo yet another major surgery and the subsequent, potentially difficult recovery should everyone agree you are healthy enough to have it on top of the heart surgery?"
It's a question I'm not sure how to answer. I know I don't want to spend the rest of this life dealing with being a paraplegic if I can avoid it. That makes everything so much more difficult, and could in fact speed the end of my life, because it's hard to keep the heart muscle in shape if I'm not mobile, and the edema can reappear in my lungs much faster if I'm not upright as much and moving. Not to mention that I'd probably have to go through the stress of finding [a] more accessible place to live, for both me and my five dogs, and that's a huge, huge fear of mine right now.
A lot of deciding to do each day, I'm afraid. I hope I can have a reasonably easy night of sleep in my own bed tonight and that I can make the right decision about what I need to do tomorrow. And for the long term.
This is, again and I'm a broken record, likely far more information than you need or want, but I thought I should catch you up to date, and you know what I'm talking about and a bit about where I'm coming from. There have been other bumps - like they can't do an MRI yet which is critical to study the soft tissue around the vertebrae and the nerve roots and cancer, because Houston left the wires that were attached to the external pace maker in my heart and they are still in my body. Just the wires. So now none of the MRI techs will do an MRI until we get this info from Houston that it's safe. And my oncology team kept sending the wrong question to Houston, even though I clearly stated what info they needed - manufacturer, composition of wire, and the safe magnificiation that can be used with this wire left in. My oncology team back here kept asking about the sternotomy wire, which the radiation techs here are already okay with. I know, because I've become the liaison with all of these guys, under my protest,since they can't seem to communicate amongst themselves properly. We should have this info by next week, though, since I finally got a call from Houston today and completely cleared up the question with my Houston surgeon's nurse who is now on the right trail. Sheesh.
Okay, I'm done. I've talked with so many docs, therapists, nurses, and techs in the last two days, plus family members, that I'm talked out. I just needed to do email, since I'm hopefully a little clearer in writing than in talking through this drug-addled brain right now.
Spending the night at home with her dogs was good medicine. Spending two nights at home was even better. From Saturday night:
As for updates ... I know there are lots of folks that are interested and I start getting those emails and some calls, and it takes too much brain power for me to focus on what to say, how much to say, how much info. I have no qualms about revealing what's going on with me, as you can tell. I suspect it helps some and just worries others to hear so much detail, but people can always filter out what they don't want to know. For instance, I know it stresses [name deleted] out to hear details, but I also know she's very concerned....
My next known thing is that I'll probably have to have another Ct scan on Monday before my radiation at 2:45pm so that they can check to see if I shifted that vertebrae when I fell yesterday at home. We are also still waiting on information from Houston on what the external pace maker wires are so the radiologists here are comfortable with doing the critical MRI on my soft tissue cancer areas and nerve roots and any inflammation around the spine. Without that, we can't proceed with whatever the orthopedic surgeon wants to do to stabilize the spine.
The best thing would be for me, spine-wise, to get the spine stable so that it doesn't deteriorate to paralysis and lack of function. There isn't enough left of that L4 vertebrae to remain stable on it's own - radiation may stop the cancer, may not, but the bone itself is so compressed down that the structure has no integrity and it's forcing the L5 into the spinal canal and the disc there is really bulging out. That's probably where the most nerve damage is taking place.
The best thing for me, cancer-wise, is to get back on chemo - has to be two weeks post-radiation at the earliest. This would delay, possibly, any other metastasis to other areas where this stuff goes agressively and fast. Like my brain or lungs or other organs, where there are already indications again that it may be active.
Problem with starting chemo is that it delays the surgery. My immune system becomes too compromised for the surgery to be safe in case of infection and in the case of actually healing trauma from the surgery, as the new cells aren't allowed to grow with the chemo.
So. Here I am. At a crossroads again. The ortho surgeon also made the very good point that he needs to discuss my prognosis with the oncologist and with the cardiac surgeons back in Houston. If I'm not strong enough for another major surgery this soon after heart surgery and if my prognosis is at best another 4 to 6 months, I'm not viable enough for spine surgery. The recovery time and the potential of weakening my overall system even further may be too much of a risk. Back to that quality of life question at the end of life.
I do know that I am going to avoid becoming completely disabled as long as possible and that given everything else, my other health is still amazingly intact. So we'll see. I'm still positive we can beat this back for now. I'm fully aware that we can't forever, but forever is too long anyway, eh? Who really wants forever?
I'll gladly take another year or two if I can get it. I have to balance the stress and strain on my kids and I can see the toll already there after this year. They need to get on with their lives at their young ages and I want to make sure it's not completely filled with them taking care of me every waking hour. That's the hardest part for me to deal with right now, as I'm so damned independent and used to doing everything myself...because I'm such a control freak!!! I need to look at other options while I can and ease up their load a bit, so that's my next goal (after I go through all the mail on my dining room table still unopened since Houston return).
No hurry on this [update]. I'm still here. And ornery as the very devil (sly grin). God these drugs are working! Yay! And I've got my therapy dogs surrounding me in bed right now, so I'm happy as a clam. Always wondered about that expression. Hmmm.
If this update has depressed you, please read that last paragraph again. My greatest fear for anyone facing the end of their life is not the inevitable end, because we're all dying, but suffering.
God these drugs are working! Yay!
And one final message from exmearden:
I'm not up to mass communication right now, just a bit worn out. I'll start again when I can establish a bit more knowledge and certainty in what's ahead.