Thank you to everyone who has asked about the blog. I had intentions to pause in my updates to align with the timeline six years ago… then something happened. Paul’s daughters lost their mom. Out of respect to the girls and to the family, I stopped writing for a bit.
I ask that you send love and prayers to them still… I can’t imagine what it must be like, to not have a safety net. As we grow older, those of us who are fortunate to still have our parents, know that even though we don’t “need” them in the same way… we will always need them. Just knowing my parents are here when I need an ear, some wisdom or to share in the joy of my grandson is huge.
Please join me in lifting Jennifer and Melissa in our hearts… fill them with peace. Let them know in some small way, they are not alone. With love… with a card… with a text… just let them know we all care. ❤ Thank You.
*** If you are just joining me , please read some of the first posts. This is my story, these were email updates to hundreds of people who wanted to keep in the loop during my husband Paul’s journey with cancer. They are frank and they are raw.
Just a short note to say how much I appreciate the email and prayers and Facebook messages. When I asked everyone to not write with questions or suggestions… That’s all I was asking for. I really do love the encouraging messages. Sometimes it’s what I count on to break up the mood. It’s just hard when people send messages about their friend, their sister, their second cousin’s wife… and they want me to research the treatment that was used.
I cannot spend any time looking into other options right now. My focus is on Paul and trying to keep things peaceful. I know everyone wants to help… but this is not help to me. It makes me feel as if I am not doing enough. It makes me feel like we aren’t getting the best care… there is just one of me and 100+ of you on this list… I am asking for you all to respect this and not suggest options.
We are letting the specialists be the specialists… we are not going to become google Doctors.
Here’s what I do know. The VA hospital is a teaching hospital. They have many Specialists who teach and also are on rotation at the U of M hospital. It’s state of the art here and we do feel that he is receiving the best care. We also do not blame anyone.
In the first few days… I had doubt. I honestly felt like he had been wronged. I felt that someone should pay for overlooking the nodules in his chest. After speaking to the many teams… and understanding more about protocol, treatments and the way this cancer moves… there is nobody at fault. It’s just a bad deal. Very bad hand- as one of the Dr.’s has explained.
When he was first diagnosed in 2011, they did a pet-scan. The cancer was active in his neck only. There were nodules in his lung. Those were mentioned on that scan and also the second scan- after his treatments were done in August. The tiny little cells never changed. They were not effected by the chemo. They did not grow or shrink. So… they were not given much thought.
When they found the metastasis in his brain… then they asked- wow- how did this move so quickly? How did it move there? Usually this type of cancer does not travel from the neck to the brain. It’s not normal… so they wanted to see another scan to see about those nodules in his lung. They feel there was a secondary spot- and it made sense, that it may be the lung. From the lungs- it can travel with the blood stream- and would travel to the brain.
When they found the metastasis throughout his body… they were all very surprised. Especially because this type of cancer doesn’t usually become so active- so aggressive or grow to these spots. So- now that they know more… and are still researching the origin… they are willing to look at options. Dr. XXX, from Radiation Oncology said she would pursue it aggressively. He is strong and not the normal case. She would seek all sources of treatment and that they are still looking at options with other teams nationwide. It’s not that they don’t know… it’s that nobody really knows. It’s not a normal case. They are looking at many options- and we are all staying optimistic.
He has four more radiation treatments left. I misspoke in the last update when I said he was on six. He had his sixth one today. Days are running into one another… it’s weird. I realized after a few days that I hadn’t actually watched the news to know what was happening in the world… I have watched since… and now know that I haven’t missed a thing.
Our hope is to go home on Friday after his treatment… we will see. I am still a bit concerned about his glucose levels- the steroid he is being given is making his blood sugar really high… so in turn- they are giving him a sliding scale of insulin. He has had a few days of eating what he chooses… and that bit him in the butt- when his blood sugar spiked over 400 and then over 500… so- after a little chat about food choices and pop… he is more consciences now. It’s just strange… he is not a pop drinker… but there is no normal here… everything is different.
The first few days he was cleaning his plate… now- nothing looks good or tastes good to him. (I have to admit, it’s all pretty bland.)
We also found out today that the steroid would probably be given even after the radiation treatments were done… so he has to learn how to manage it.
Please keep sending the love- and support- the prayers and the good thoughts… it’s really helping us!
Peace and Love,
Well… We came home on Thursday night, got up early and traveled back on Friday morning for his radiation treatment… Then back home again. Long day on the road.
We have to go back on Monday for his final radiation treatment and are thinking of leaving Sunday night because of traffic back up in the Flint area. On Friday- a portion of I-75 was closed, and it took us about an hour to get around it with the bumper to bumper traffic… Evidently it was flooded because of the storms. (Anyone who knows me… Knows I hate driving in bumper to bumper traffic… It makes me nervous! The S-curves in Grand Rapids make me nervous!)
Paul napped and rested most of the day- I went to the gym to catch things up and make sure it was still standing… The only odd thing was no matter how much I turned the radio down… It was always blaring. I turned it down… And it still seemed louder. I turned it down again… And even again. (The radio at the gym plays a Christian radio station… Hmmm… Someone trying to tell me something?)
Our table is filled with mail… Lots of cards and prayers. Thank you to everyone for the thoughts and the cards… it’s surreal. Thanks to my mom and Phil for mowing and cleaning the house… It was nice to come home to fresh sheets on the bed and no smelly garbage.
Not much else to report. Just need to wait until he finishes radiation and then talk to the Oncology Deptartment about chemo. They sent us home with lancets and insulin. The steroids are still making his sugar high. They also added a few new meds to the mix. He takes a long-lasting insulin at night, and Glipizide twice a day now along with the steroid meds and an anti-seizure pill.
I think the reality of what we are facing has started to settle in… Just being home for a few days and seeing people and getting hugs… Oh boy… I feel so blessed to have so many people caring for us and praying for us. I can’t imagine my life without all of you. Please keep sending the love… He needs showered in it daily! It’s hard to know if it is the meds, inner hurt and anger, or the disease that is making him so edgy… Probably all of the above. Sometimes out of the blue- he will say something that floors me… it’s still hard to talk and to plan. But we know we must.
Today is now Monday morning- we are in Ann Arbor now… waiting for his appointment. We stayed at the same Hotel that I stayed in a few nights when he was in the hospital…
Yesterday we had a few good talks. It’s hard to describe the emotions. It’s so hard to know what the next step should be. It’s hard to plan a life… I guess the hardest thing right now is that he is tired and he is ornery. It’s the medicine… it’s the disease… it’s the fear.
I know I must allow him to follow his own path. I know I can’t own his emotions. It’s so hard… especially when we do everything together and we share everything else. It’s not mine to process… I must process my own thoughts. I must process my own fears. It’s not that I am separating myself… hardly… I am just trying to allow him to feel whatever he wants without trying to sway him to the bright side. (My bright side is the happy place that I go to… when I can’t cope… we all have a place like that… some call it denial… I call it safe. It’s where I am safe… it’s where I can process… I cry… I laugh… I get mad… then I come out and I am okay… it’s a brighter place that where this disease wants us to be… and for that I am thankful.. I have a great place to escape… I just wish that he had a place like that too.)
Trying to stay positive each day and not allow the negativity and the toxicity of the disease to slip in… that is the hard part. I know there are tons of resources… please know we are not stupid… but we must process it in our own way. I know there are helpful groups, programs and tons of online websites. Believe me… as a member of a 12 step program for over 13 years… I do know how support groups work. Each case is different though. Each person reacts differently. Each patient is facing a different type, kind, side effects and such… so please know… we are okay. We are going to be just fine. I am just venting- and thank you for listening to me. Just being real.
I have wonderful spiritual friends and they are supporting me in such an amazing way… I ask that all of you- please support Paul. He needs the love. I am okay… he needs the miracle.
Signing off now… going to take a walk while Paul showers and get some more coffee… Coffee is my friend.
Peace and Love,