Yesterday was another day from hell...
We lost our brave friend Matt Keenan to this nasty disease last night. His wife Pam and I have kept in touch throughout our husbands nasty battle with pancreatic cancer. Mike and I looked up to them for strength, insight, advice and friendship. Another young man gone too soon. Pam we're sending you love and strength. Now his beautiful wife Pamela need our help. Pamela was Matt's primary caregiver. She is currently on FMLA so that she could dedicate all her time to him. My wish is to lessen her burdens and help her financially. Thank you so very much for your support.
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My last post left off with our difficult decision to continue with a new treatment or go for a clinical trial at Johns Hopkins. It took us two weeks decide each time we met with the oncologist we would probe him with questions and scenarios. We were not sure what the right move was and we were having a very hard time making a decision and sticking with it. After about 3 weeks of Mike not being on treatment we decided to go for the clinical trial. We believed it was the right thing to do and we were at peace with that decision. Our next step was to see if he was eligible and go through insurance. We had a feeling that his insurance would not accept clinical trials so we were told. However we still pushed through and said we would do what ever it took to make his insurance work.
We decided to go with the trial because it was a new and very "upcoming hopeful" line of treatment. It involved using a specific pancreatic tumor vaccine along with immunotherapy to help his body identify the tumor and attack it through his own immune system. We had heard about the great successes that it had with other cancers such as melanoma and we were excited to be one of the very few to try it out. Our other option was going on a second line of treatment with a chemo drug called Gemabraxine. Besides Mike's first chemo it was the only other line of treatment they are using on pancreatic cancer patients. The way Mike saw it was I can try a chemo that is not a cure but a treatment that prolongs my life by who knows how long or we could take a risk and try a trial that could be a game changer. Mike wanted that game changer. His oncologist agreed that he was strong enough and a good candidate for the trial.
A week went by and we were still not getting approval from his insurance. I kept calling and bugging the intake trial nurse at Johns Hopkins as well as his insurance agent. Finally I got the dreaded but not surprising news that his insurance would not be accepted and John Hopkins could not take him for that reason... I don't understand a patient can't have treatment because of his insurance being a road block? It's messed up. I'm sorry but atleast he HAS insurance... what use is that?
Yet again cancer has us dangling around like puppets.
In the meantime Mike had not been on any type of treatment for 30 days. A part of becoming eligible for clinical trails you have to have a "wash-out" which means no treatment for 28 days before being eligible. Now let me remind you pancreatic cancer is one of the most aggressive forms of cancer. So doesn't it make perfect sense to go off treatment for a month to try a trial that has no obtainable data yet?? ... well I think not.
Tuesday morning Mike started having a new type of pain. It was a lingering pain that lasted longer than most. He was no longer eating and no longer taking in fluids. Ava had come over the previous weekend with a cold and by now it had caught up with me. I stayed home while Mike went to work. He kept texting me how uncomfortable he was. I was becoming more and more worried that there was some type of blockage in his bowels. We had been to the hospital two times before for this same reason and we knew it could become a huge setback and serious if it occurred. I encouraged Mike to listen to his body and come home and rest... and he did.
Ava had swim lessons and soccer Tuesday night. I told Mike to stay home and rest and I would bring her but he persisted he would be able to go.
That is when things started to get worse. He was dry heaving sweating and his pain was pretty intense. I rushed him home and had the typical argument of "I think you need to go to the hospital" and he insisted he needed to rest so I let him rest. Mike's dad took Ava to soccer and I stayed home to be with Mike.
Around 6:30pm he started to dry heave which eventually turned into vomiting. Mike has not vomited almost at all since he was diagnosed. I knew something was up.
Around 8:00pm Ava came downstairs and said I think dad is calling for you.
I went upstairs and found Mike laying on the bathroom floor throwing up. I screamed... my throat dropped to the pit of my stomach and I started to panic. Then my fight or flight mode kicked in. I screamed for Ava to get my phone I met her downstairs so she wouldn't see her daddy so sick laying on the ground. I gave her the choice of who to call to come be with her and she chose Mike's mom. She said she felt bad that papa (Mike's dad) watched her all day and brought her to soccer so she insisted he needed a break. As I was calling Mike's mom Sadie our puppy could sense something was wrong and she peed on the floor. As always everything hits at once. I hung up the phone tried to pull myself together which was a failed first attempt. Ava watched me frantically run around the house looking for items to pack for the hospital. She went in and out of hysterically crying. I kept running back to her holding her and comforting her with any words I could get out. I stepped back threw my hands to my head and kept yelling to focus and out of pure anger I found the closet thing next to me which ended up being a kitchen cabinet door and I slammed it as hard as I could. Not thinking I would scare Ava... I needed to take control and snap back in to reality. I ran upstairs and sat with Mike trying to do anything possible to make him comfortable. Ava sat with me. I kept talking to him to make sure he was conscious. When his mom got there I called 911 and we waited. A police officer and our local fire and rescue team arrived first. I begged them to take him to Brigham and Women's because that is where his oncologist sees his patients. They said we would have to wait for Trinity to arrive to make that decision. Ava helped me pack our overnight bag. I was grabbing things left and right, change of clothes, medicines, phone chargers, my tablet, toiletries and more. I've become pretty good at getting what we would need for overnight stays. In between shoving things in my bag I was grabbing Ava as tight as I could, comforting her in any way I could. It's not fair... all the suffering we have endured she's just a baby. I will never understand how life can be this cruel...
Ava went downstairs to be the look out for the ambulance it made her feel proud to be the first to tell us. Thank you to the fireman that comforted her while I was with Mike. Thank you for giving her the radio and allowing her to page the responders to see how far out they were. You really gave her the comfort and ability to feel special that she helped her daddy out in her own little way.
Mike's mom Judy and I shielded Ava from the sight of her dad being brought down the stairs. As soon as he was outside on the stretcher Ava ran into her daddy's arms. A sight that forever haunts me and is almost unbearable to watch. She repeated over and over my daddy my daddy cancer go away make him better. The sight put tears in some first responders eyes. Mike was wheeled away... we could hear Ava sobbing in her Mimi's arms...
By 8:40pm we were on our way to Brigham's in Boston. Thank you Trinity for listening to me and allowing us to be brought to the hospital we needed to be at. Mike was strong enough to make the trip into the city.
Around 9:20pm we arrived at Brigham's. In the ambulance I had paged his oncologist to notify him what was going on and that we were bringing him in. We quickly got him in a Emergency Department room which later on I realized we were lucky because the ED was slammed.
Eventually Mike received some IV pain meds and fluids. They took him for a CT scan of his belly and found out that he had a partial bowel blockage. Next the surgery team was in and out explaining possibilities of having surgery to correct the blockage. Memories started to come back to me from when he was first in the hospital waiting for his diagnosis. Lots of teams come in asking all the same questions and poking him in all the same spots.
His ED nurse was amazing. She explained everything to us and really made us feel at ease. Thank you nurse Christina for making things easy for us. It makes a world of a difference when you get a great nurse. The ED doctor decided to have a tube put down his throat and have it suction out all the fluid in his stomach. By reliving the gas in his belly and the contents in his belly it would help the blockage. Around 12:00am the tube was inserted and then he had an x-ray to verify the placement. Mike was not having the tube in his nose. He was so uncomfortable. After around 2:00am another surgeon came into talk with us and he insisted she takes out the tube or he was taking it out himself. She agreed and pulled it out. We were told that they did not think he needs to have emergency surgery. We would then discuss surgery at a later time if the blockage does not seem to resolve on it's own. Without getting into too much detail he talked about how serious surgery is for a cancer patient. Risks of infections and not being strong enough. Luckily as of now he does not need it. Finally by 4:00am Mike was understandably getting irritated and wanted to be admitted. Around 4:30am after 7 hours in the ED we were admitted into the oncology unit at Brigham's. By now my cold had given me a splitting headache and the lack of sleep and stress was putting me over the edge. We both got about 2 hours of sleep before Mike was woken up at 6:00am for vitals then again around 8:00am. I slept on a bench until a cot was brought and then I crawled into it.
When I woke up I was sick to my stomach and still exhausted.
Mike's pain has seem to subside and he is now having some movement in his bowels. This is a good sign. The oncology team would like him to have the tube back in his nose to help relieve the nausea but for now he refused. He is now resting. We have to wait for him to be able to eat food and pass it on on his own.
I'm exhausted, angry, scared, upset. I want my husband back I want our lives back. I don't want him to suffer or deteriorate. I hate not having control. This disease really tests every aspect of your life. It hurts your family and friends. I'm truly scared for what's to come...
I will post updates and information if things change.
In loving memory of Matt Keenan and sending love and support to his beautiful and amazing wife.
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