Oy, lol, it has been a long, long while since i've updated here and of the things that have changed. Things i'd sure never thought i'd be saying in conjunction with myself!
I updated this some I believe shortly after diagnosis but back in Oct after seeing my PCP and being admitted to St.Mary's-Madison through the ER numerous tests and procedures where ordered and done - CT Scan x2, Bronchoscopy-lung biopsy, Xrays, a Colonoscopy for which the unfortunate results showed colorectal cancer (explains my weight loss over the past year or so and abdominal issues that had gotten worse over time.
Due to this finding a bronchoscopy was then done to biopsy the lung nodules which also in turn are related to the 1st cancer. Crazy. Just seems absolutely crazy! So a Oncologist was assigned to my case as well as my General Surgeon from a few months ago who happened to see my name and picked my case back up.
She ended up doing a bowel diversion surgery to create a colostomy (so weird,the placement at the front center of my stomach is super annoying as it's virtually impossible to hide it's position under clothes. I've learned to take care of this every day and now manage it on my own minus seems like to frequent questions and visits to the Ostomy Nurses and Dr.Henkel's help (the other week she after finishing a surgery at St.Mary's stopped at the out-patient Fish Harchery clinic I infuse at and together w/my Ostomy Nurse helped re-evaluate my ostomy site and finding a (attempt at) better ostomy covering. Very grateful for her, for that!
I've f/up with my Oncologist a few times after getting released from St.Mary's and UW (due to this colostomy my General Surgeon had reached out to my Peds Neurosurgeon and they working together (albeit separate med centers) made the plan for what to do with my VPL Shunt + Dr.Iskandar moved this about a week after the cancer was diagnosed and then I was re-admitted to St.Mary's for my General Surgeon to do her thing and create the colostomy).
Due to my cancer being advaned and stage 4 already + my heart issues actual treatment for the cancer will be more of a palliative approach and we've settled on a oral cancer drug (which is shown efficacy for my cancer while also being a gentler chemo option. Another Oncologist who saw me in the hospital when she was on call also recommended we do radiation to help shrink the cancer mass in my bowel. I am unsure if this will be used to target the lung masses as well which although my Lung dr. and I figured where likely a slow growing infection or something else turned out to be the cancer which has spread.
It's a slow growing cancer so my team seems to feel with the cancer treatment we may be able to get about 2yrs. Admittedly this was a tad shocking to me but guess it is what it is and who knows maybe some advancement will occur in that 2yrs. I met with my Oncologist again later this wk after a PET Scan to see if the cancer has spread anywhere else.
New drug.. Where we are at..
So all paperwork for this drug has been sent off to the FDA for the compassionate access process and my PCP heard back last week that I am approved to get the alternate ERT drug and plan is to start in Febr. once my dr. comes back from maternity leave (Is it weird I really can't wait for her to be back? We have kept in touch some via email at her request when she was going out so she is mostly up-to-date on whats going on. . In the meantime before she went out out my Primary dr. has been working with the infusion site and Pharmacy team to come up with the actual infusion protocol for my case (total volume to be given, ramp up rates, etc. We know already they plan to stay at 6hr total infusion time and keep the new drug in 1/2 the total fluid volume that the few other people with my disorder on this drug get are infused in (usually 250ml I believe, my case they will decrease to the same 150ml volume each infusion that I get with my current Aldurazyme). I am looking fwd to starting it and so far my new cancer diagnosis hasn't stopped my still being able to be part of the study/use the drug. It is something to look fwd to in amongst this new crap diagnosis!
My Infusion Nurses (they came over to St.Mary's to visit)
VPL Shunt revision and then another
It has been so long since i've updated I never even updated how the VPL Shunt revision a few months ago went. 1 VPL Shunt revision turned in to 2 but I actually felt soooo good after this 2nd surgery! Sucks now that both shunts drain to 1 pleural space I do not feel anywhere near as good as I did after this surgery above.
Otherwise life has just been busy between usual/my normal medical stuff and then adding in many more appts for the cancer diagnosis/treatment after having spent 2.5wks in St.Mary's at the diagnosis then a couple days at UW and another 6 days at St.Mary's after the colostomy placement. Since then i've had 1 more surgery to revise the colostomy which started as a loop colostomy to then revised to a end colostomy (such a pain, I miss the loop ostomy I 1st had! My Surgeon and the Ostomy-wound nurses including 1 who also works in my infusion clinic have been a godsend, We are still working to figure out the best ostomy cover/bag system and in the mean time I have good days (nights really) and not so great ones where I wake up and the thing is leaking.. Part of the problem right now is there is a wound opening at the stoma and the ostomy drains down so much harder to contain it. Definetly takes a little art (not my forte, lol).
I also ended up startung radation 2 wks ago for the primary cancer mass and finish that Fri., it's helped symptoms some and i'm also finding OTC meds to help digestion with food so that's not to uncomfortable. I am currently down about 30 pds which is ALOT for me (5'5, I used to be about 130ish).
I am grateful I atleast like the drs. on my team for this new diagnosis and all have worked with my Primary dr and a few other of my drs is sorting the best care plan./management plan. Having both shunts now drain to 1 pleural space has equaled headaches returning sadly which is/was a really big bummer but am glad the 1 shunt won't cause issues in the cancer area if anything more has to be done there besides the colostomy that was placed a few weeks ago.
I am praying so hard the primary cancer mass can be removed after radiation of perhaps after a few rounds of the oral chemo drug if my Oncologist opts to restart that (2wks on, 1 off. He had talked about they may recommend 2-3 cycles of this before any re-attempt at surgery). Whatever the case i'm hoping radiation will have helped shrink it enough it might be an option (my Surgeon tried once when she coverted the colostomy type).
Sunday School, almost always my very favorite thing of any given week was AWESOME to be back after having been gone several different times. We start class up again next wk and I genuinely look fwd to it. I absolutely adore these kids.
Is alot but God has a plan and so I pray this new treatments con't to help ease symptoms some and will also say I am really grateful to my General Surgeon for her compassion in managing pain well post op and after I got released. My Pain mngnt dr as well. she has worked with th Hospice dr who picked up my case and once again her compassion is truly amazing.
Overall there is still some up in the air re managing this cancer and so day by day i'll trust God knows what he is doing and is always with me.
Hope everyone had a wonderful Christmas filled with memories, fun and God's blessings,
Thanks for stopping by,
I apologize if this is a bit all over the place. A work in progress getting this written and finished,
May 2020 and the NEW YEAR be a little niceer to each of us! I am grateful atleast for all the support I have, starting with my parents and sister and 1 of my closest friends,
Erica
Wishing you good digestive health
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