I don't know where to begin. When the pain started? When acid reflux started? When I was diagnosed with Stage IV Invasive Lobular Carcinoma? Here's a summary of what I've gone through the last 4 months.
October 2020, I started having bouts
of acid reflux. Eventually got worse and was put on Pepcid. After a
few months of that, I didn't notice any improvement, so I was put on something
else. I asked to skip the 2nd drug and go straight for an endoscope. That was declined saying it
was protocol to rule out 2 meds.
Approx. a month later, I started
having stomach issues/pain. Not diverticulitis pain but I knew it
was something that needed to be checked. So, I checked myself in ER May
17, 2021. CT scan showed intestinal blockage caused likely by scar
tissue. Dr. Martin broke the news. She became my person at that
moment. We connected. I trusted her, instantly. The nurse
inserted an NG tube. Not a pleasant experience, gotta say. Spent 3
days in hospital. The 2nd day, they performed a small bowel
follow-through x-ray procedure to see if the blockage had cleared on its
own. This procedure is considered as therapeutic and a diagnostic
test. The x-ray showed no blockage. Things apparently cleared on
its own. Now all I needed to pass gas in order to have the NG tube
removed. That happened and I was released on Wednesday, May
19th. Seemed like a one-off blockage.
The same symptoms started again late
on Thursday and got worse Saturday night, so I checked myself back into ER
Sunday, May 23rd. They did an X-ray, and it showed a blockage, so
they admitted me back into hospital. Another NG tube but this time I had
an OLD School nurse (Diane) who had a great technic. Still sucked big
time, but not as bad. Dr. Parsons recommended I have a
laparoscopy to explore to see what's going on. He also noted that I
had some thickening in my stomach wall but that would be checked another
day... He added that perhaps I should have another CT Scan w/ contrast
prior to the Laparoscopy. Nurse Diane took me to my room and got me all
settled.
The next day, I was
beginning the process of drinking the contrast (YACK) when Dr. Martin
visited me. She convinced me to go straight to having the
laparoscopy. So, May 25th, that's what happened. She was unavailable
to perform this procedure. New surgeon,
Dr. Tomasi. Met him 2 minutes before surgery. I was expecting them
to snip the scar tissue and I'd be fine. Well. When I woke up, I
realized it was cancer. Either Lobular or Gastric. It was in my
colon, intestine and a spot near my stomach. In all, they removed 4 tumors.
2 on my right side (small intestines) along with my cecum, and appendix.
And 2 on my left side (Colon). Each resection had lymph node
involvement. May 29, the Pathology report came in saying it was Lobular.
Changed Oncologist as soon as I
could. Scheduled PET Scan and new Oncology appointment and waited.
Each of those appointments were eventually expedited. But while I waited,
I developed an infection from the Laparoscopy. Very painful! Dr.
Martin urgently had me seen. Wound above my bellybutton was reopened and
the infection drained out. Had to leave the wound open and the plan was
for it to close on its own. This involved a lot of attention.
Packing the wound daily with wound tape. It was important to heal
properly and quickly so I could begin chemo. Nurse predicted it would
take 2 months to heal. It didn't take that long but it did take over a
month.
New oncologist appointment went
well. Learned a lot. My new oncologist has a plan for me but she
was also very concerned about the wound delaying my Chemo treatment. She
said that if I end up in ER again with the same issue, I'll be sent home
because there would be nothing, they could do for me. That thought was
very concerning. But I kept a positive attitude. I was not going to
have a Hat Trick for ER visits.
June 20, I was almost all healed up,
but I felt the blockage pain again. Checked myself into
ER. Surgeon didn’t have much hope for my recovery but then a GI
doctor was consulted. A Stent was recommended to open the area that was being
blocked and constricted by a tumor. Miracle
procedure. So thankful for the GI Doctor who took charge.
Endoscopy was performed. The Stent was
placed successfully. Dr. Partridge saved my life. I was at the
hospital for 8 days or so. I didn't eat anything for most that
time. I was so nauseous, ALL THE TIME. My stomach was getting use
to the Stent and the tumor was causing issues. I finally ate food.
But still could not keep anything down. One of my nurses was very
concerned about me withering away from not having nourishment and she mentioned
to my sister Mary that a TPN should be considered. Mary said
whatever it takes! The nurse recommended it with my team of
doctors. Next thing I know, a PICC line is being installed on my left
arm, above my elbow. And TPN was ordered. I'll have TPN through
August and perhaps through September 2021.
The goal with rebooting Milk Dud Warrior blog is to share my ups and downs. Tough lessons learned so
far. I want people to know the questions to ask, the tumor marker tests
to request, to make sure your oncologist is curious enough to be your
doctor.
The love from my family and friends has
helped me get through the toughest days.
This diagnosis really knocked me down but the love and total support from
everyone has helped lift me up. The
flowers, cards, quilt, blankets, care packages, food, rides to chemo and doctor
appointments, haircuts, and finally a buzz cut, cuddles, hugs, phone calls,
texts, EVERYTHING in between has helped balance my perception of this new life. I will continue to fight with all the
treatments recommended to me. Please
feel my love and gratitude for everyone.
I'm halfway through chemo. Session 7 of 12 today, August 12, 2021.
Fuck cancer.
Sincerely,
Nancy
Comments
Re: the iPredict study I read they're no long accepting patients. My oncologist says I need to finish this treatment first before trying any studies. Maybe by then, I'll qualify for this study and that they open it up. I think they may have arms of this study that might fit for me.
Take care.
Stay well!