On December 23 Sharon called her daughters complaining of severe abdominal pain. She was hesitant to call 911 because she didn't want to go to the nearest hospital. She has a lot of medical conditions and a complicated medical history and prefers to stay in the Amita healthcare system (her base hospital is St Josephs in Chicago). Carrie picked her up and drove her to Resurrection at Harlem/Talcott because it was closer to Sharon's apartment (she was in severe pain). She had to be dropped off due to COVID (no visitors) and was admitted that night.
Dec 24- Sharon was diagnosed with an intestinal blockage so they inserted a NG tube to decompress her stomach. They were hoping that bowel rest would help the blockage to pass naturally but as the days went on her condition did not improve. She has had intestinal blockages in the past- one time required surgical intervention and removal of 18 inches of intestine.
Dec 29- The doctors recommended laparoscopic surgery to explore her abdomen. Once inside they discovered she had abdominal adhesions- you can read more about it here: https://www.niddk.nih.gov/health-information/digestive-diseases/abdominal-adhesions
They also said her gallbladder was very inflamed and looked very bad/diseased so they removed it. At this point they did not indicate that cancer was a concern. They anticipated that the gallbladder removal and clearing the adhesions would improve her condition. At this point she still had no visitors due to COVID restrictions.
Dec 30-Jan 3- Sharon's bowel obstruction condition did not improve- the NG tube had to stay in and they also had a PICC line for nutrition. The last time she ate was December 20. The NG tube is very uncomfortable. Here is information on the NG tube and PICC line and why they are used:https://www.health.harvard.edu/diseases-and-conditions/bowel-obstruction-a-to-zhttps://www.careandwear.com/blogs/community/124683651-what-is-tpn-and-how-is-it-administered
Jan 4- The doctors came in the evening and told Sharon, while she was alone, that the pathology report showed cancer in her gallbladder. She called her children and let them know the news. As can be expected, she was very upset. Another complicating factor is that she could not take her antidepressant medicine because they are not available via IV and she could not take anything by mouth due to the NG tube. After being alone for 2 weeks and not getting her medicine she became very depressed.
Jan 5- Carrie was granted a visit from the hospital and Chris worked to get her transfer to St Josephs approved. The care at Resurrection was not good and she needed to be transferred to St Jospesh's where she knew the doctors and they knew her. The oncologist said that the cancer was stage 3 and that the tumor was on the bottom side of the gallbladder (not the liver side) but had spread to at least one lymph node. The news that it was in the lymph node was hard to digest but we had hopes that it could be "cured" with a surgery called Extended Cholecystectomy:https://www.cancer.org/cancer/gallbladder-cancer/treating/surgery.html
The oncologist at Resurrection said Amita did not have a surgical oncologist and that we could find one or he could recommend someone. This is not a common surgery- top cancer centers do a couple of hundred per year. It is rare to catch Gallbladder cancer at the point that is could be cured. Although this surgery gives the best chance of a cure the cancer is metastatic and usually comes back within 5 years. Still, we were hopeful. Her liver functions were good and the tumor placement meant surgery was an option.
Jan 6- Sharon was transferred to St Joseph's via ambulance and her care began. We were told that they did have a surgical oncologist and that he has performed this surgery in the past (it is so rare he had done 30 of them in his 41 year career). He said he could do the surgery Jan 14. The surgery was scheduled while we explored other care options. She still could not eat and had the NG tube and the PICC line in place.
Jan 9- Carrie and Chris were able to visit Sharon in the hospital after escalating to the head of the hospital (through the nursing manager). This lifted Sharon's spirits a bit after being alone for over 2 weeks. She agreed to move to University of Chicago as inpatient status and for an oncology consult- even her primary care doctors agreed they had more experience and they could provide better care.
Jan 10-13- No other hospital would consult while she was inpatient at Amita and she was not able to be discharged. University of Chicago denied St Joseph's transfer request- they said COVID had them at capacity. It was very frustrating that they would not help and we did not know anyone there to "pull strings". Time was of the essence to do the second surgery, which was potentially curative, so Sharon decided to have it done at St Joseph's. St Joseph's did a CT scan of her abdomen and chest and said the cancer looked to be isolated to the gallbladder and lymph node system- they said there was no reason to believe it was in her liver or abdomen. They declined to perform a PET scan. During this time she still could not tolerate food- they performed a small bowel and large bowel study with barium and it was flowing through so they couldn't understand why she could not eat.
Jan 14- Sharon's daughters received a call from the surgeon during surgery- he opened her up and found cancer in her liver (he did a biopsy during surgery and it came back positive for cancer). He said that the planned surgery, Extended Cholecystectomy, should not be done. He also found a mass in her abdominal cavity that was causing her intestines to kink up and causing the intolerance to food. He removed the mass and said that hopefully she would be able to eat now. We don't understand how the mass was not visualized on the CT scan of the abdomen. The mass is with pathology but they are assuming it is cancer. The abdominal mass and liver tumors changed the diagnosis to stage 4- we are not sure if it is stage 4a or 4b. The pathology report will help them to finalize the diagnosis. The surgeon also recommended placing a G tube so that she can easily get liquid nutrition and so that they can decompress her stomach in case she gets another intestinal blockage. With Chrons and abdominal cancer this could happen again, and she hated the NG tube so this would help her quality of life. The surgeon also placed an epidural to help with pain control. Chris and Carrie asked to be there when she was told the news but the hospital would not allow it so she heard the news alone in the recovery room.
Jan 15- The hospital allowed Carrie to visit- she was there from 12:30-6:15. Sharon was moved to ICU for closer monitoring since she spiked a fever and her heart rate was elevated (130's). Sharon was mostly sleeping, but when she woke up she was upset and agitated. She sat up in bed and moved her legs a bit.
Jan 16- The hospital allowed one 15 minute visit- her mom got to see her and be with her (Chris took GG to the hospital). Sharon was asking for her mom so it was a blessing that they were able to see each other.
From now on Chris and Carrie will post updates in the journal section below so that everyone can stay informed. Sharon is texting and on FB a bit but some of her messages don't make sense and she is frustrated when people can't understand her. If you hear from her please express your love and don't push too much to understand what she is saying :) If you have any questions you can call or message Chris or Carrie.