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We took our mom, Marjorie MacKerron, to the Doctor for what we thought was a urinary tract infection. The symptoms were similar to past UTIs. This was the last week of March. The test came back negative for infection but she did have very swollen feet and legs that were red. It looked like that could be an infection so she went on antibiotics for a week with a return visit planned.
The UTI symptoms continued and there was no reduction in the legs and feet swelling. She was also getting a distended abdomen. Her PCP ordered an ultrasound that day and they did not like what that showed. A CT Scan was ordered for the next day. A call from the PCP that night suggested that mom had advanced ovarian cancer.
We set up our first appointment with an oncologist at Mount Auburn Hospital for April 10. It looked like that to her, too. With mom in very good health otherwise, she talked about mom being able to handle the chemo infusions which ovarian cancer responds very well to. The hope was to have good results and have a few more years of independent living. However, they needed to send out a sample for lab work to confirm the type of cancer. When they went to withdraw fluid from her stomach for the lab sample, they were also going to remove several liters of fluid to make her much more comfortable and give the fluid in her legs somewhere to go. They encountered a very thick, jello-like substance and were barely able to get out enough for a test. The medical tech said she had never seen that before. So no relief from abdomen swelling relief with that procedure. We had a follow up appointment with the oncologist on April 20 for the test results.
It ended up that mom did not have ovarian cancer. She had very rare cancer that started with a small tumor in the appendix, it perforated the walls and spread to her ovaries and other organs constantly creating a mucinous fluid. There is a very large pelvic tumor that presses on her bladder, hence the bladder problems that brought us in there. The name of her cancer is Pseudomyxoma Peritonei. Pseudomyxoma peritonei is a rare malignant growth characterized by the progressive accumulation of mucus-secreting (mucinous) tumor cells within the abdomen and pelvis. The disorder develops after a small growth (polyp) located within the appendix bursts through the wall of the appendix, and spreads mucus-producing tumor cells throughout the surrounding surfaces (e.g., the membrane that lines the abdominal cavity [peritoneum]). As mucinous tumor cells accumulate, the abdominal area becomes swollen and digestive (gastrointestinal) function becomes impaired. It also presses on the blood vessels to and from her legs, and the swelling in her legs has nowhere to go. https://rarediseases.org/rare-diseases/pseudomyxoma-peritonei/
) 2 in one million develop this cancer and there is not much history of successfully treating it. Our oncologist had known of some success with a chemotherapy drug called Capecitabine. It is used for a number of GI related cancers. It is an oral chemo that she can take at home, mailed to the house. The cycle is 14 days on it (3 pills in the morning, 3 pills in the evening) and then 7 days off of it for her body to recover. She began taking it on May 11 and made it through the first 14 days. She had indigestion and was very fatigued from it but was not vomiting and seemed to get through it okay. Not fun but manageable. We couldn’t wait for her 7 days for a break from it which started last Saturday. Her legs did not look any better nor did her abdomen – they even looked worse and redder. On Tuesday morning I went up to her house and found her with her PJ bottoms soaked. Her legs were weeping fluid seeping out of them, and she did not feel well. We called an ambulance and got her into the ER. Her legs have acute edema, something called stasis dermatitis. They did a new CT scan and ultrasound. There was no change from previous scans to her tumors after the first chemo cycle. It did not appear that the chemo had any effect at all and for the most part the swelling looked worse in all of the places. And the legs were redder. They are very painful to the touch. They have been wrapping them with ace bandages and gauze where the weeping occurs. It seems to make her legs feel better. This is fluid seeping through her skin through small tears so there is concern about infection getting into those areas. We had some discussion about getting a second opinion at Dana-Farber. My neuro oncologist there was very willing to help me get her in immediately to see a specialist in this cancer. But in further discussions Mom felt that aggressive treatments with no guarantees would just hurt her remaining quality of life and exhaust her. So she has opted to come home with hospice care. She will be discharged tomorrow and we begin with assistance in the home to get her through this. She does not want to continue taking the chemo pills so we will end that now. The tumors already are crushing her bladder so that does not work and will probably move on to pressing the colon and stomach. She can hardly eat now, not much of an appetite. Managing her symptoms and pain will be the focus. We all plan to be there for her and enjoy what time we have left with her. Through my cancer journey [Dawn], I relied on the faith that my Mom and Dad had instilled in us since a young age. They taught us to turn our trials and troubles over to God to take care of because He is able and he always has a plan for us. He never leaves us. My mom is approaching this stage of her life trusting her Lord and Savior to be with her and welcome her home to Heaven when it is time. She has a positive attitude through this with her faith in God, and does not fear what is ahead. The ER nurses and doctors told me that she was a joy to have there. It is a gift from God to show joy at times like these. I am so proud of my brave mother who didn’t hesitate to try the chemo at 90 years old. She has made it through many difficult and unpleasant tests with courage and gratitude to all of us helping her. She’ll be at her beloved 35 Becket Road home tomorrow afternoon and hospice care will begin then. Checking ahead of time to see how she feels, visitors will be welcome. What can you do? Right now food is not much of a treat for her. She is drinking Carnation Instant breakfast (strawberry), light meals like fish and enjoys some puddings. So she really doesn’t need food other than these at this time. She thoroughly enjoys the cards she receives and reads them over and over. You can send them to 35 Becket Road, Belmont, MA 02478. Her email is email@example.com . Things have been changing rapidly in the past few weeks so we will leave frequent updates here on her Caring Bridge page for everyone to keep up with things. Hopefully she will leave some messages of her own as she is a lovely writer and has written beautiful and creative things for us, her family, over the years. Some of her Faith thoughts and writings became so sought after by all of us that we named the entries Marge’s Corner. She had a blog and was blogging before blogs were known. For now we welcome your good thoughts and prayers for Marge and all of us. Marge, Jody and Dawn.