Big changes for my cancer treatment. Now that I’m here at the Clinic, I’ve made the rounds between doctors, imaging and more doctors. This place is fantastic! Not like the treatment you get somewhere else in the so-called ‘real world’. That’s where you call in to make an appointment with your doctor and wait and wait, oftentimes weeks or even months to be seen, only to repeat the entire process again (and again) to see the next set of doctor(s) if your condition requires it (or not get any referrals at all). And the diagnosis / treatment that you may get may be terribly inadequate or even wrong. At least, that’s been my experience, so when I came here, I was a bit gun shy.
Here at the Clinic, I’ve been able to get in, see my primary doctor here, and then get immediately scheduled in within 24 hours or so to the next round of appointments for whoever else I need to see or test that needs to be done. Pretty amazing actually. This place seems to run like clockwork. Very efficient, courteous and caring doctors and staff. I can’t say that after many years of seeking medical help that I’ve ever seen anything quite like it except at the Shriner’s.
There is also an incredible “we can help you” attitude here. Very positive and uplifting. You don’t feel like they don’t care. Or like they’re trying to cut corners. I found out that the doctors here are all on yearly salaries, so there is no financial incentive for them to order unnecessary tests or operations. Everybody gets treated the same and there are people here from all over the world (doctors, nurses and patients). It’s rather amazing to listen to all the different languages being spoken in one place!
Mayo also has a ‘body, mind, soul’ ethic for the treatment and the well-being of every patient. They’ve attracted some of the best doctors and nurses in the world and tackled some of the biggest problems. My condition is quite rare, but they’ve seen this one too and have the best experts.
There’s been some changes on what’s going to be done.
I will be getting two surgeries, one for the Moh’s (micrographic) surgery, and another surgery for reconstruction and skin graft. Two surgical teams have been assigned to make this all happen. I’ll have to stay longer to ensure that there are no complications.
I’m also going to have my lumbar issues looked at (MRI and a consult with a spinal surgeon). This is timely since I’m already here and in the best hands possible, and necessary because I’m in constant pain. Spinal stenosis is a condition where the disks in the vertebrae have degenerated or become damaged, and the nerve roots in the spine going down to the legs are impinged or pinched. Today was particularly bad for me due to all the walking on hard surfaces here.
The doctors believe they’ll successfully remove the DFSP. They’ll have to go ‘bone deep’ which means I need a proper skin and perhaps muscle graft. The CAT scan had to be taken three times but it looks like the DFSP is not attached to the bone. Only when I’m operated on do they know these things for certain but so far, it looks like I get to pull through. I’ll have a healthy scar, probably look like a shark bite or something to go along with all my other scars. Hah! Battle wounds in the war of life.
This is the area to be operated on, but from the sounds of it, they’re will be a large lengthy scar down my back too as part of the skin graft procedure. If you turn your head to the left, you can sort of see a smiley face!
I’m very glad I opted to not go for the wide resection first offered me back home. Looking back, it is very clear to me that the cancer doctor there was just rushing me through and would have probably disabled me even further. He had no plans to ensure I had any movement in my arm or shoulder afterwards (so I probably wouldn’t have had any). Or I’d have been back in a few years time for more DFSP removal. No MRI was ordered, no biospy, no CAT scan, just an appointment on the cutting table. I’m quite confused at the huge differences in diagnosis, treatment and recovery between the two facilities.
So far, I’ve spent about $20,000, this will cover up to the Moh’s surgery. There will be the 2nd surgery for the skin graft, which looks to be a pretty involved procedure since they have to cover the bone properly and deal with any muscles removed, then one or two days in the hospital and additional hotel costs on top of this, so my $25k estimate was far too low. Donations and/or food sales are still very much needed and appreciated! Otherwise, I’m staying on here as a one-handed janitor!