Ever since Kramer passed away, I’ve been so bummed. They had sent the last PET scan results in his online patient record but I never really got a chance to read them before he passed away. I kept thinking I’d do it but our last days were so packed…so packed that it was a bounce from one thing to another to another. With all the kids and family here I never got a chance to read it before he passed. I wanted to understand what was taking Kramer away from me. That was okay…I figured there was time. But, there wasn’t. I sat down to read the PET scan results the day after Kramer died and the record was gone. I could no longer access his medical record online. I don’t know why, but it really crushed me. It was just a PET scan result. In general I already knew what it said but somehow I felt if I READ it carefully, I might understand why he passed so quickly.
I mentioned it to the kids and they all said, “Sorry Mom, that stinks”. I mentioned it to Kalissa and she said, “Well, let’s get it”. She ended up calling the clinic and talked to Kramer’s nurse. Kalissa explained the situation to her and asked if we could talk to his doctor one last time. The nurse said sure and we scheduled that appointment for yesterday.
As you all know, my kids are awesome, so Karl and Kelli stayed home to watch the garage sale and off Kalissa and I went-one last trip on Kramer’s behalf to Lacrosse…we had this guy with us. It’s Gannon. Isn’t he getting BIG!!??
We ended up taking the longer way and drove past this building. All during Kramer’s cancer journey we drove past it as it was constructed. We kept wondering and wondering what the building was going to be.
We finally found out for sure today. A sign outfront said ARENA. That had been one of our guesses.
It wasn’t long before we were crossing the Mississippi river and entering Lacrosse….
We got to our appointment just on time. It was a little awkward as we technically didn’t have a name to check it with. It wasn’t Kramer’s appointment but we weren’t patients. Just as we got to registration, a nurse came out and got us. She took us back to the room and Doctor Mariner was right in…no waiting at all!! AWESOME.
First we reassured the doctor that we were VERY pleased with Kramer’s care and highly respected him. We just needed a Cancer 101 class and wanted to understand how Kramer’s cancer went so wrong. About that time, Kramer’s PA Lisa came in and chatted too. It was good to see her.
I’ll admit, the Tuesday of Kramer’s PET scan, when they told us that Kramer was full of cancer and he only had 3-4 weeks to live, my brain shut down immediately after hearing that. I only caught bits and snippets of what was said after hearing. My brain was still stuck on 3-4 weeks. I know the doctor told us more. I know she explained much of it, but my brain just stopped. I think it was a type of “shock”.
I wanted to see the doctor because I wanted to hear what was said in those minutes after the 3-4 weeks diagnosis was said.
So we asked questions, shared and got some great answers.
Here is what we learned. The cancer is definitely not hereditary. Kramer’s was likely due to smoking so not hereditary But if family members smoke, they may have an increased risk.
We amongst the family have theorized and wondered if the failed surgery attempt to remove the tumor, irritated the cancer and made it spread. There is no research that proves that theory.
They have only have had about 1 person every three years, have trouble with breaking their neck like Kramer did. It is not typical at all. Metastasis to the neck bones isn’t common.
What was initially thought to be pneumonia was actually radiation induced pneumonia. The radiation acted poorly and filled his lungs and that was the issue…not a virus or bacteria. This explained why they had trouble reading a chest CT scan.
We also talked to them about our concern that we feel that at some point in a smoker’s life they should be recommended to have a chest CT scan. Dr. Mariner said that there is a stigma at times for patients who smoke …more of a “they did this to themselves” mentality. He said they are working to try to get that lessened. We expressed a strong interest in advocating for smokers so that chest CT scans are done much like recommended colonoscopies or mammograms. We all know at 50, your doctor is going to start badgering you to get a colonoscopy. Why aren’t smokers badgered to get a CT Chest scan if they have been smoking 20 years?
I hated that Kramer smoked. I did everything I could to encourage him to quit smoking. He tried but until he was diagnosed with lung cancer he couldn’t find a way to quit. So many others are the same way. These people are still husbands, dads, grandpas, and human beings. They deserve diagnostic services.
We asked if they knew of a way to advocate for this to happen. Doctor Mariner said that in the fall they are holding a conference on this very thing and invited us to be part of the program. We both readily agreed. We even offered to speak if need be to advocate for better practices for people who smoke. They were excited about that so we’ll be waiting for them to contact us.
After all of our questions were answered we thanked them again and Dr. Mariner gave us copies of Kramer’s PET scan. We got hugs from both Dr. Mariner and Lisa. I think we all felt a little better.
Kalissa and I feel lots better. I think we both needed to hear that his cancer was an aggressive impossible type. I think both of us were wondering on why we didn’t catch something..or maybe we could have done something better for Kramer. Sadly, there is nothing we could have done. There was no stopping this. It was bigger than we were.
Doctor Mariner said families of deceased cancer patients don’t often come back and speak with the doctors. He said maybe a couple a year…. You know, for Kalissa and I, it was a very good experience. I think it gave us both some better understanding. Although it didn’t give us closure to missing and loving part of losing Kramer, it did give us some closure to the medical, cancer side of what happened. I highly recommend a final visit. I know it really helped the two of us.