**This is graphic. There is no sugar coating this. The pain. The weight loss. The deterioration of my husband’s body and mind. It’s horrific.
Like I said in the beginning of this blog, I don’t know when his symptoms began. There is a picture KitKat took of John in the hotel room in NY, Summer of 2013 and I remember looking at it as soon as she took it and thinking he looked like he had cancer. Izzy will tell you he was coughing on and off “in the old house” which was before December 2013. I am pretty sure the night sweats started about this time but not so bad where I was doing laundry every morning. There is a video of him playing the drums during this time and in the end of it, his arms hurt so much he was massaging them vigorously. That made me do a double take.
In February, I noticed his skin was yellow. Not just his face but his body-particularly the collarbone area. I mentioned it to him. He looked jaundice. His doctor said it was a vitamin D deficiency and gave him supplements. I wish I had been more aggressive with this. He just didn’t look right.
Early March the night sweats became worse. He was changing his shirts 7 times a night-taking a shower early in the morning because he was just drenched. He started a cough late March and was back at the drs. office for it. The doctor told him it was seasonal allergies but didn’t have any advice on the night sweats. I didn’t realize he had low grade fevers all day, everyday. When he was well, he snored but I noticed sleep apnea was taking place and I am sure there is no correlation but there were times he stopped breathing for long periods of time, I would nudge him to make him breathe again.
In May, he went for his annual physical with a bunch of questions. The physical involved an ekg and blood work. All came back normal. His weight was 141 pounds. I was very angry but he was smug about it. The doctor told him they would start to worry when his weight was in the 130s. I remember John taking a carrot and eating it and telling me he never felt better. I couldn’t believe it. He lost 40 pounds in one year and no one was concerned. He kept telling everyone he felt great. The best he ever felt.
I started sneaking in more oil in his food. Cooking fatty foods, hiding calories as much as I could to make him gain weight but nothing happened.
In June, his appetite was very small. He would hide how little he was eating and go get lunch at the Whole Foods hot bar so I couldn’t see the amount. At this time, he was ordering joint pain supplements from a company that was not FDA approved. What I didn’t know was that he ordered 4 other supplements to give him energy, vitamins, minerals from this same company. Dinners went from a huge plate to a small plate with barely anything on it. He would tell me he would eat more later. I also juiced a lot and he loved drinking them. They went from a full 12 ounce cup to no bigger than 3 ounces. I guess the acids in the fruit caused him a lot of pain or he just lost his taste for food. He also got confused a lot.
In early July, I emailed his sister about how worried I was about him. This was very hard and I told her I didn’t mean to cross any boundaries but I needed feedback. She emailed me and said that 141 pounds is within normal range for someone who is 5’9. I let it go.
In late July, we took the girls to a beach in Maine. He sat on a towel the whole time. He wore long sleeve pants and a long sleeve shirt and could barely look up. His skin was yellowish grey. On the ride home and the day after, I kept telling him he didn’t look good. All those months I told him this and he would either get mad that I would bring up his weight/looks or that he felt amazing. The image of him on the towel is what I have nightmares about. He looked like he was dying. He was.
The next week, my sister-in-law asked to take Izzy to the beach. I almost told her no because John was so tired but I said yes. They came over and saw him and the next day she took him to the ER.
John was in the hospital for 6 days. He was tested head to toe twice. Every test came back normal. Every cat scan, EKG, 2 MRIs, colonoscopy, HIV, Hepatitis, endoscopy,blood test came back normal. His heart, liver and stomach were fine. They suspected Lyme’s Disease. He was tested for allergies and had even gained 8 pounds. We told doctors about the family history with cancer. They gave him a blood transfusion and he felt so much better. He was sent home. He slept a lot but when he would get phone calls, he would act like nothing was wrong. He would talk to his friends for more than an hour and then sleep. I got mad. I told him he wasn’t ok. I told him his body is shutting down and we don’t know why and not to tell everyone he is feeling fine.
When he got back home, he was eating and his stomach seemed stronger than before. He was letting himself enjoy food-maybe a little too much but it was nice to see him eating things he hadn’t in a year.
The hematologist working with John said he sent his blood everywhere and the results would come in a few days…a few days turned into a few weeks and a few weeks turned into a few months. I would call when he said he would get the results-so I would call him every 3 days asking for those results.
The time he was at home, the edema got worse. **GRAPHIC***. The edema spread to his legs and penis and testicles. Every doctor and nurse said from this time until he died- “Feet up, drink water, walk”. He did this everyday. His face was starting to sink in and the greyish yellow was coming back. His heart rate was also very rapid at this point. I thought the vein in his neck would pop that is how strong and fast it was beating. He did get on meds for this but it never got down to normal. He also had the scent of butterscotch. His skin smelled like it. KitKat has a very strong sense of smell and while she loved to be with him, she refused to smell him for a long time or sit on top of him.
Mid August, I took him back to his doctor because his legs and feet were purple and very swollen. He had bone marrow taken out the day before and was in a lot of pain but I just didn’t like how his legs looked. The PCP told him the area was warm so he wasn’t that concerned. Feet up, water and walking. He ordered another ultrasound on his heart and had blood drawn. A few days later, we went to get an ultrasound on his legs for the edema but said they seemed to be fine. I also found the supplements, which were right near my coffee. Did he think because they were right in plain sight, it was ok to take them? I took them with us and the doctor told him to stop taking them. Finally, he did. I think, because he was a man, there was a lot of denial that he wasn’t feeling good and he had a high tolerance for pain.
John went back to work. He wanted his normal back. He wanted to teach and be with his students. Every night he would come home tired and happy but he never sat down. In fact, I have been thinking about this these past few days-he was in such pain he would refuse to sit down. I guess it made him think about the pain. He would do the dishes, clean the kitchen, go run an errand. I would ask him to sit with me and he never would. He couldn’t. He would also eat a lot one day and the next, just not be able to eat anything.
In early September, he had a blood transfusion that didn’t go well. He was cold and vomiting. The hematologist said there were no markers for cancer and nothing pointed in that direction. The next day was another MRI and ultrasound. The morning of this, he showed me his stomach. He looked like he was 3 months pregnant. It was the tumor starting to grow-only there was still no diagnosis so I thought it was just bloated from all the tests, transfusions, etc. When we were in the hospital, the nurse told us he could be admitted. John gave a firm no. You know that voice in your head that says “yes”? Listen to it. The next day, we were back in the hospital and he was getting admitted. A laparoscopy was scheduled to see what was going on. They found something on the lining of his stomach. The doctor who did his endoscopy and colonoscopy didn’t find anything last month but there was an area that concerned us and we asked if that was biopsied and she said yes and it was negative for cancer. They were thinking what they found was an ulcer so we waited a few days for the results.
He came home and one day he would have a lot of energy but the next, he would sleep all day. The edema wouldn’t go away. It kept creeping up. His penis was huge and sometimes, he couldn’t urinate because of it. Still, water, feet up and trying to walk.
Mid September, he gained 30 pounds of water weight as well as the tumor. The meds were messing with his mind. This is when I started talking to him loudly and clearly so he could understand me. His mind was easily confused now. Sometimes he didn’t make sense. He also developed the hiccups and they wouldn’t go away. They gave him thorazine for this.
September 18, we found out John had cancer. His appendix was spurting out this liquid tumor. We took him to Tufts Medical Center because he was vomiting and not feeling good. I begged for them to admit him. I was crying with the receptionist because the doctor was on vacation. The oncologist surgeon didn’t see him until September 22. He was at Tufts the whole time. Dr. G. said it was either pseudomyxoma peritonei and mesothelioma or both but was confident he could do the surgery but his protein levels were low and would need a TPN line to up his proteins. The surgery date was late October.
September 22 was the day we found out it was Mesothelioma. It was the last day of Summer and I remember driving and looked back at the sunset. The sky was a bright yellow. In all my years of living in California, I never saw a sky so yellow. It was beautiful.
He couldn’t pee in the toilet anymore. His hand eye coordination was not that good and his penis was so large that the pee would go everywhere. He came home with plastic urinals and would use that. The color of his urine was anywhere from yellow to an ice tea color. I had to measure it and write down the color. The ice tea colored urine started earlier but I am not sure when. I do believe I had him mention that to his doctor when he had his physical but I am not certain it started that early.
September 26, we took him to UMass Memorial in Worcester for a second opinion. Dr. L saw him the day he was admitted and said she would do a small surgery and then wait to do another surgery. We opted for Dr. G’s 12 hour, more aggressive surgery and HIPEC. I always wondered what would have happened if we chose Dr. L. Maybe he would have still been alive.
October 1, we got the date for the surgery. October 27. He wasn’t peeing or having bowel movements. His tumor made him look like he was 7 months pregnant. His head shrunk from lack of nutrition (which was already small from the diet he was on) and his legs were swollen with water. He was looking like a human sized pear. He also would only sleep in the early morning. Other than that he would be in bed tossing and turning because he was in so much pain. At one point in the hospital, he was doubled over like a woman in labor-only he wasn’t birthing a baby-his stomach was making way for the tumor that was growing and crushing everything inside.
October 7, he was back at home, eating but losing weight. His face was gaunt. His voice was weak and sometimes, he couldn’t talk.
October 8 (our 12 year wedding anniversary), a friend came over. He brought Indian food for us. He really couldn’t eat it and I told his friend not to get any for John but he did. John had a little of it. I am glad because he enjoyed it and also, it was the last time he would eat chicken curry which was his favorite. John would talk but then go to sleep in mid sentence. He wouldn’t focus and would need his meds, his shot, his urinal. Having visitors was good and bad. I knew he wanted them but it tired him out and his mind was not what it was. It was hard to see him try to have a conversation with someone because most times, he wouldn’t make sense.
October 9, he was back in the hospital because he was throwing up what looked like phlegm. It wouldn’t stop. We took him to the local hospital but they ambulanced him to Tufts. In that ride, his lungs were filled with liquid and rattling so bad. They put a tube in his nose to drain his stomach and what was coming out was black. Anything he ate, came right back up. He would drink soup and it would come right out into the container that was sucking up the insides. The tubes were so loose, sometimes it would spill all over his hospital johnny and sheets and the nurses sometimes wouldn’t change it. It smelled so bad. We rarely saw Dr. G. We saw the doctors working under him but when he saw John, he was shocked at how awful he looked. His face was so sunken in. His bones were sticking out. Dr. G said no more food or water. TPN bag for all the nutrients and ice chips. I cried. I didn’t get that…but I know it made sense since his stomach wasn’t working anymore. I just couldn’t believe the surgery wasn’t done earlier…and I get that he wouldn’t have made it out alive because his nutrition was bad.
October 14 he was back home. He was hungry and tired. He was bloated and weak. I had to bathe him. His legs were so full of water, he could barely get in and out the tub. I liked scrubbing him down. His skin looked so much better when it was clean. His spine was so pronounced and his shoulders were sticking out. Moles on his body that I had watched through the years had changed colors. The skin under his bottom was hanging. He had no more bottom left. When he sat for long periods of time, the skin would be grossly indented on whatever put the mark on them and would take a good couple of minutes to go back to “normal”. His legs were like-if you put wet sand in a balloon. If they were to get rid of the water and tumor, I was sure he would have weighed less than 90 pounds. I cannot tell you how he looked-like he had terminal cancer? Like he was in an internment camp? Yes to both. Sometimes the edema would move around and go to his face and I got to have a day where John looked like himself. Other times it would move to his hands.
I was looking for walkers and a toilet extension because he couldn’t sit on our toilets anymore without hurting himself. That is how swollen it was-now imagine that but three times more. That’s how big it was.
October 16 was a day of drama. He ran out of dilaudid and that is a very strong drug and needs a doctor’s note-not one they can fax at that. When I did get actual prescription and I went to the pharmacy, they didn’t have it. Time was running out. I was crying and yelling at the pharmacist to get it. They took forever but finally found a pharmacy that had it. I was so relieved because it was passed his time for the meds. When I got home, he was ok. You just never know because the pain is so bad that anything can happen.
October 17, his labs at the hospital showed he was strong for the surgery and Dr. G’s office called to bump the surgery to the 23rd. I could have done cartwheels I was so happy.
The visiting nurse came on the 19th and checked his lungs because they seemed to rattle. She gave him a “clean bill of health” and said his legs seemed fine. What does that mean? They were so bloated with water, sometimes the water would seep out.
October 22, the day before his surgery, John threw up. It was so bad. Black and I saw four pills in his vomit. He never digested them. His hemoglobin was low but still, we had the go ahead for the surgery. John was alert that day, I think mentally and emotionally getting ready for this surgery. That night, I saw how stretched the skin was on his face. How sunken his eyes were. I saw it before but it was much worse. How can it get much worse?? His shoulders were square because the bones were sticking out. I cried. I couldn’t help it and I couldn’t stop. He was dying and I watched it all without doing anything or knowing how to do it. For months, I fought to get a social worker to see us-to speak to him and maybe 2 came but were so busy they couldn’t sit and talk. I wanted to take him to acupuncture but he was just too weak to go in and out of the car. I fought to get him occupational therapy and physical therapy but no one did. I wondered if therapists could travel to our house and hospital so he can have someone to talk too. I wasn’t strong enough. I wasn’t loud enough. His body was not even human form anymore.
October 23, when his surgery was denied, his life started slipping away. His eyes dimmed.
October 25, he was dry heaving. He was losing his vision too, telling us to come closer so he could see us. That was hard. What was weird was the IVs for his meds weren’t working and we gave him the pills and that would make him sleep. In the evening, he seemed better. His feet weren’t cold and he wasn’t nauseated as he usually was.
October 26-28 he was in and out. His tumor was so big. His legs were too. His body was shutting down. Always nauseated. Always in pain. So much pain. On the 27th, he was talking to his sister and he mentioned how this would have been the original surgery date but he wasn’t going to have it anymore. He was trying to make sense of why it didn’t happen. He did this a lot. The nurse in the hospice said she was going to prescribe a something for his edema…why wasn’t this done months ago? **GRAPHIC** Late night on the 28th, he had a couple of bowel movements and his sister and I cleaned him up. He went to bed and was on his side to give him an enema. His bottom was out-there was just bone and skin. We were so shocked.
I write this out and I still can’t believe that this is how he died. How quick it was. I feel like he should have had better care. I feel so awful because he was dying right in front of me and I couldn’t stop it.
He was in pain. So much pain. The tumor grew way too fast. Early September to late October his tumor grew at an alarming rate. He looked 11 months pregnant. Dr. G. said the tumor was everywhere and wrapped so tightly around most of his organs. He had never seen such an aggressive tumor. The edema made him so bloated he couldn’t walk anymore. His mind was off and on for most of it and I am really glad because if he understood what was going on, his death would have been quicker, At one point, he didn’t recognize his sister and that devastated her. He always recognized me and the girls and I am so grateful for that. Before his diagnosis, he was 141 pounds. When he died, he was 191 pounds.I am positive 100 pounds was tumor and water.
John was a good guy. Very kind and gentle. Soft spoken and would never hurt anyone. He died a very terrible death and it happened way too fast and I will never understand why or how. I will never get over it. Ever. I relive moments of his cancer everyday and I always will. It will never go away.
I wrote this all down because if Izzy and/or KitKat show signs of this, I will be aware. I will know what to do and I will do it with a stronger voice, a better understanding and a faster response.