This week I saw my original surgeon, Dr. Schwabb.
Unfortunately, he informed me he is moving to Madison. So that really sucks.
Out of all the doctor’s I’ve had to deal with it, he’s been my favorite by far.
Definitely seemed to be the most concerned about what has been going on.
They did my mammogram on the right breast, which came back
normal.
He recommended that I speak with the plastic surgeon, Dr.
Bushnick about going through hyperbaric chamber treatment. My Primary, Dr. Bellucci-Jackson had wanted
me to do it back in December, but said I needed permission from my infection
disease doctor, Dr. Hafiz (he said yes) and Bushnick (who said no). Schwabb
explained that the shrinkage and twisting is due to a lack of oxygen getting to
the tissue and fat cells due to poor circulation in the breast. Partially due
to the infection, partially due to the radiation and partially due to they have
no clue why.
Yesterday, I saw my radiation oncologist who basically said
the exact same thing regarding the hyperbaric chamber treatments. He believes
that all of this is also due in part to the auto immune issue he investigated
earlier. Though he did all kinds of testing, and came up with all of the signs
of an auto immune disease, he could not discover it being any known auto immune
disease.
Not only did he recommend the chamber, he also believes that
I will have to have a mastectomy at some point. However, doing a mastectomy
right now, there is no guarantee that I won’t have the same healing issues and
infection problems that I have been dealing with since September’s surgery. He
is looking into University of Chicago and Northwestern to see if he can find
someone who can try to figure out this tissue issue.
While everyone wants to blame the radiation, he points out
that there were problems before the radiation even began, including the cancer
and the first infection. He admits that the radiation didn’t help the situation
and that I appear to be highly sensitive to radiation – probably due to the
unknown auto immune issue. Without more
information, they basically would want to wait about 2 years before doing any
surgery to try to fix the breast and then there still wouldn’t be any guarantee
that another infection wouldn’t occur.
So until it can either be fixed or removed there is the
disfigurement to deal with. It hurts, and it hurts bad. Most of the time my
left arm cannot be lifted over my head. It’s now locking up both my shoulder
and my neck besides. The hyperbaric chamber should help with that and will need
to be followed up with massive physical therapy.
Other than the physical pain, there are the emotional side
effects. My left breast is now about half the size of the right one and much
higher and tighter, making me the most lopsided I have been since this whole ordeal
began. Only one hole has closed so far, though two of the others are getting
much closer. Not only is dealing with all of this exhausting, I don’t sleep
very well anymore, and looking into the mirror usually ends with at least some
crying. Not only are there still holes, it’s twisted and indented, and parts of
it are still hard as a rock.
It’s hard for people to picture, much less understand, what
exactly it’s doing, so here’s the latest picture (graphic editing provided by
my son). Parts of it look better than it did, but the shrinking and twisting just continue to get worse, and I'm told that without the hyperbaric treatment, it can get worse than this.
It does get downright
depressing trying to deal with this, not only because it won’t go away, but
because so far, nobody has been able to say 100% what the hell the issue is. It’s
hard to deal with something when you don’t even know exactly what it is you are
dealing with.
On Monday, I start my Cancer Transitions support group, so
hoping that will help with learning to cope with some of this. This crap has
been going on for a year now. I need my life back. I need to get back to work
and my parents need me to get back to being able to help them out. I didn’t
plan on having to add in 2 months of 5 hour days to sit in a tube and probably
freak out since I’m claustrophobic anyway.
So that's where things are at right now. Next Thursday I find out if I am done with the antibiotics or not and hopefully I will get off the PICC line, though there is no guarantee that is going to happen. On Friday I meet with Bushnick and see what he has to say about everything including the hyperbaric treatment. More updates will come then.
Btw....the 25 pounds I lost while on the antibiotics that killed my appetite? Yeah, unfortunately that all came back.
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