29 MAR UPDATE | Follow Up Great, New Round of Chemo Coming.
GREAT follow up with surgeon! On to Round 2!(BTW- I still get to keep my glorious hair!)
I met with the surgeon last week and he actually thanked me for pushing him on this path of treatment. He said I was healing fantastically from the surgery and that doing it as a reversible ileostomy was actually the right way to do this and things are going back together swimmingly. If you remember, he wanted to do a permanent colostomy instead of a reversible ileostomy. CLICK HERE FOR THE DIFFERENCE BETWEEN AN ILEOSTOMY AND A COLOSTOMY For a surgeon the colostomy is a one-and-done situation and of very low risk. The ileostomy has to be managed, and eventually reversed, involving much more risk of failure forcing them to eventually have to go back in and do a colostomy anyway. For me the reversible ileostomy is a risk as well given that my body has to accept the resection (which isn't always a given) and then learn from scratch how to poop again. The upside, though, is the ability to return to a semi normal life and not have to deal with these bags for the next 45 years.
At my appointment he actually thanked me for pushing him in this direction saying that 90% of surgeons wouldn't have done it this way, and 99% of patients couldn't have persuaded them to change their positions. I just didn't want to live my life as a slave to this bag if there was a reasonable chance of success. Once the MRI came back showing a dramatic decrease in tumor size, and my AMAZING radio-oncologist's millimeter-accurate precision, we were able to create a pathway back to normalcy. I am so thankful, not only for my amazing support group and prayer-warriors, but for my medical team, who are world-class practitioners of their craft.
Moving forward it's a different ball game. Up to this point we had very specific targets: one tumor the size of an apple, and one the size of a golfball. (TW- the Dr. said they were probably growing for more than 8 years inside me, and it was EXTREMELY rare to have 2 tumors, and rarer to have no metasticity.) We could SEE them and MEASURE them and eventually REMOVE THEM. All treatment was laser precise and their efficacy was highly measurable. A complicating factor to my treatment is 7 pesky lymph nodes that were blown up with the cancer. For those unaware, the lymphatic system is pretty much the reason cancer starts in one place and moves to another. (CLICK HERE for an article on how this works.) It runs parallel to the circulatory system and causes all kinds of havoc for cancer patients. At this point we have actually removed the tumors as well as the tissue surrounding them, but we don't know what's been left floating around. Treatment changes from a laser guided missile approach, to a carpet bombing approach. We don't know what is floating around, how much there is, or even if anything is out there. All we know is that if they land in another organ, we have to start all over again. The next phase is a mix of pills and infusions for 24 weeks.
Next week I go in to have a port installed that feeds directly into a main artery and then the Monday after I begin my chemo. Infusion every 3rd Monday and pills for 2 weeks on and 1 week off. The pills are what I took last fall and handled pretty well (at a higher dosage,) but the infusion is a bit more involved. First question I asked was about my hair and they said hair loss isn't a side effect of these meds. (Thank God for small favors.) So I am getting ready for a long campaign in my war against cancer.
The ileostomy was initially meant to be a 2-4 month proposition, but we can't reverse it until I am through the chemo, and my chemo ends right at the very beginning of my crazy season at work. So it looks like I will be getting the reversal RIGHT before Christmas, which kind of works for me. My surgeon was APPALLED that I was planning my treatment around work (and honestly, rodeo) but it's the burden I carry.
Thank you for supporting me. I can't tell you how much I appreciate your emotional, spiritual, as well as financial support. This has been a long haul, and we are literally just approaching the 1/2 way point of this battle. Please keep up the prayers as I KNOW they are working.