Angry skin

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