The Last Doctor Trip for Kramer

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.

40 thoughts on “The Last Doctor Trip for Kramer”

  1. So happy you got some time to talk with the doctor. Cancer is evil. When it decides it is going to come on it does and no matter what it has it’s own agenda. I’m glad you are going to be advocating for medical care for smokers. I know smoking is a choice but it’s not easy to give it up.

    Take care. Lots of love, hugs and prayers coming your way.

  2. Susan the Farm Quilter

    I am so glad you got to go back and talk to the doctor! Families need answers, and you definitely got the best one – not hereditary!! I am so glad you are advocating for better care for smokers. I find it interesting that being a drug use is a choice as well…at least the first time you try the drug (or cigarette), but it doesn’t take long for the addiction to take over. Drug use is seen more as an illness, while smokers are seen by many as choosing to light up each time. Quitting smoking has been compared to getting off heroin, and most people who do get off heroin have extreme help from a substance abuse/detox facility, while smokers are expected to just stop on their own. I hope your inclusion in the conference really helps make a difference!!

  3. My mom didn’t die from cancer but from a aneurysm of the brain. I can honestly say that talking to the dr after all was said and done helped me immensely. The only thing I’m glad for was that she went doing what she lived best. She was at a quilting workshop. Ironing blocks on minute. On the ground the next. Took me 20 years to even look at a sewing machine again. So sorry for your loss

  4. I agree more needs to be done in helping smokers to quit. Some find it very easy when they just “know” they will not smoke again (my husband at 2:00 p.m. July 23, 1980. Our sons 4th birthday).
    Living in Pittsburgh PA I am near University of Pittsburgh Medical Center (UPMC) and I joined a study following smokers and they periodically did CT scans and blood draws, etc. They have been following up with me at least once a year for 20+ years. Mostly by mail asking for current feedback. I would think you or medical team members should be able to find more information. If you can’t find it contact me and I can give you a name and phone number for someone connected with the study. I am glad you were able to get your questions answered.

  5. Denise Briese

    Wow i have seriously been wondering about this..i was like maybe farm chemicals? It wss a constant thing i was curious about because my husband is a two pack a day smoker…has s history of cancer in the family . i shared this story with him in hopes of getting through. Thanks for sharing

  6. Donna Pheneger

    I’m glad you were able to take this step. It’s a difficult one for many and I’m happy Kalissa was with you.
    It’s a bit of closure for you to understand how it happened so quickly.
    Prayers and blessings to you all

  7. How lucky you were that Kramer’s doctor agreed to meet with you. Judging by what was said, it’s highly unusual!! I can just imagine how much it must have helped. Sending MORE quilty hugs, as you and your family continue to process Kramer’s passing.

  8. Phyllis Singler

    I had also wondered what was happening to Kramer. I am so glad you went to see the medical staff. Great idea. That helps so much with the healing process and actually quiets your mind. As an aside my mother in law always smoked and was diagnosed in November and passed in January 1996. I quit smoking then and never went back. Smoking definitely causes cancer. No if ands or buts. It is an incidious bad thing. Hugs to you strong lady

  9. I’m so very happy that you got to sit with the doctors and get the answers you needed. It is very helpful! My Dad and I did this with my Mother’s doctor after her passing. My Mom smoked and had COPD/emphysema for about 10 years and was on a oxygen 24/7….and still continued to smoke, but that’s another story. She was hospitalized for exacerbation of the COPD on Oct 5, 2013. The next day tests showed she had lung cancer that spread to her liver, lymph nodes and brain. They gave her to the end of the year to live and like you, everything that was spoken after those words, I never heard. She passed 6 days after diagnosis on her 67th Birthday on Oct 11th. Watching her decline so rapidly was horrifying and I figured it would be the catalyst I needed to stop smoking. It didn’t help…I’m still smoking. I tried Chantix, an antidepressant that helps some to stop, the patch, cold turkey….I just can’t do it, at least not yet. I haven’t given up on stopping. I’m currently battling breast cancer and am doing a ‘wait and watch’ approach for a for a form leukemia that I was diagnosed with 12 years ago as well. To know that there are gracious and loving people such as yourself and your family who will advocate for us (the ones who get looked down upon and lectured every damn doctor visit makes my heart full. At the very least, we should be encouraged to get the scan and treated with the same attitude of an addict who has many more resources available to them. I am hopeful that with your help, attitudes and medical practice will change nationwide for us smokers. ❤️

  10. With the help of a smoking cessation class held by a psychologist on an Air Force base I managed to stop after twenty five years of smoking pack and a half a day. It will be thirty years on Aug 31. The once a week followup for a year is what helped me the most. It was the hardest thing I’ve ever done. Our older son smoked and died of a massive heart attack at age fifty two, younger son quit after having a stent but darling daughter still smokes. It’s a true addiction like drugs and needs not just the initial help like patches and such but the followup like I had. So grateful for my Dr and need to see if I can possibly find him to let him know that.

  11. Although I’ve never been a smoker, I would never assume it’s easy for anyone to just quit. I sometimes compare it to the way I like to eat my chocolate. I could never just stop eating chocolate! I’m also one that had wondered about some of the chemicals that farmers are exposed to. Being an advocate for getting a CT scan for smokers is a great idea. I was also surprised that the access to Kramer’s medical records just went away like that. I had no idea. Once again, thank you for sharing these parts of your journey. I know you will be helping others with the info that you share!

  12. Another interesting blog post that I’m happy you shared. While you were going through this experience, I didn’t want to say anything negative but 10 years ago I had a close co-worker whose husband was diagnosed with stage 4 lung cancer. He was 52, she was 40 with two small children. I can’t remember but don’t think he was a smoker but he worked in a local industry known to cause lung issues. They gave him no hope from the beginning and he lasted about four months. I was devastated to hear your news about Kramer as based on what she had shared, I figured the outcome would not be good. I’m glad you got some explanations, I don’t think she ever did. I also wanted to share that my stepdad was a smoker and died in April of COPD. I had no idea how insidious COPD is and what we learned is that while smoking was a factor (he quit 40 yrs ago) in his COPD and death, his early years working on a farm with the dust and chemicals probably contributed as well.

  13. Mary Ann Mettler

    That was wonderful to be able to go to see the Dr. and PA and talk with them when your mind isn’t whirling. Such a hard thing you have all been through – and it is good to get answers. Prayers as you continue on your journey. May you help many.

  14. How great to have this time with Kramer’s doctors for some clarification of his journey. So glad you got some answers to your questions.

  15. So happy your Dr was willing to meet with you. I would hope all doctors would agree to this type of meeting with families. Participating in this conference will help with your own healing as well as helping others who are at risk for this disease.

  16. The “shock” you mentioned is normal. As a nurse,and former cancer patient, I appreciate the fact that even through your grief and healing you are thinking of others and trying to help. What a strong lady. I admire you for doing it.

  17. I’m so glad you got a chance to have this conversation with Kramer’s doc and PA. It’s pretty common for patients (and their loved ones) to not be able to hear everything that’s said in an appointment when bad news is delivered. Sometimes knowing more helps even when there’s nothing more to do. Great medical people know that they may treat the patient, but they care for the family in cases like this, and it sounds like this team recognized that. It probably was encouraging for them to be able to do this last thing for Kramer, in helping his family, too. Wishing you strength and good memories as you press on with life.

  18. Jo my mom died of lung cancer almost 20 years ago. She smoked for 30 years but had quit for over 20 years. Sometimes even if one quits, one can still get cancer. I agree with you that an early X-ray would have caught it sooner. When my mom started feeling bad, my sister insisted on a chest X-ray and that’s when it was caught. My mom had a wonderful team of doctors too. We received a beautiful letter from her oncologist when she passed. Your experience brought back all the painful memories of my mom’s experience with lung cancer. I prayed for your family and that you would have a different outcome. I wish you luck pushing for X-rays. It would change a lot of outcomes I am sure.

  19. Marianne Barta

    Thank You for sharing about your visit with the doctor to find out more about the cancer.
    Prayers continued for you and your family in this difficult time. Hugs

  20. A physical addiction to nicotine ought to be treated as a disease and not as a character flaw. My father started smoking as a teenager because smokers in the Navy got extra 15 minute breaks. He became a heavy smoker and only quit when he had life-threatening, bleeding stomach ulcers. Even though he hadn’t smoked in over 30 years, he still had the craving to when he saw someone smoking.

    For most people, quitting smoking is one of the hardest things they will ever do. I don’t believe most smokers smoke because they want to but because it has become an addiction, and they can’t stop. There is a lot of shame involved in trying to quit and failing. They need compassion, not judgement. I agree that chest x-rays should be recommended for middle age smokers.

  21. You teach us all about advocating for answers and understanding for ourselves, and a more positive medical attitude toward helping smokers get better diagnostic opportunities. Roger would be so proud.
    My dad died 15 years ago and was also a smoker who couldn’t quit. He is so missed. Dad’s diagnosis and death made my husband stop smoking and our son never started. Dad would be glad for that.

  22. I’m so glad you had that follow up visit with the doctor. Knowing the medical records will disappear is scary, but good to know. I so admire your courage and strength you had during Kramer’s illness. Your blog is a inspiration to me.

  23. Jo, I am so glad that you were able to have a meeting with Kramer’s doctor. Wouldn’t it be nice if all families of cancer victims were able to do that, just for closure. When my younger brother and dad both died from the same rare form of stomach cancer, my older brother and I became part of research that helped identify the gene mutation that causes this particular cancer. I think that actually made it feel like we were helping to “do” something about our type of cancer. Yes, we both have the mutation and both of my daughter’s also. At least we know and were able to make informed decisions about what to do.

  24. Jo, this is for the smokers commenting. I hope you don’t mind.
    I am a former smoker who thought I’d never quit. However, I did after 30 years of heavy smoking. Tried all the approaches and finally went to an acupuncturist on a lark. I figured it was worth a shot. I was truly amazed. I walked out wanting a cigarette, but by the time I got to my car it was over and I never craved another one. I’m probably a strange case, but the smell of cigarettes never tempted me, it was almost like I couldn’t smell it for years. The urge was gone to reach for one, it would flit through my mind every once in a while, but was gone as quickly as it came. Now, I will say that I was really ready to quit and that may have helped, but I really think the acupuncture worked. Like I said, I was amazed and would recommend it to anyone trying to quit.

  25. I think it is wonderful that your dr took the time to speak with you regarding Kramer. He did that on his “own time” because insurance can’t be billed for those visits. I know many drs write letters to the family but face to face is such a blessing after the death of a loved one.

  26. Carol Lorraine Stearns

    Thank you so much for sharing Jo. We are grieving as well as we have grown to love your family. What a wonderful the doctors did for you, to meet and understand. Blessings for you. Gannon is super cute!

  27. When I was diagnosed with breast cancer, the second I heard the word “cancer” my world “stopped”. I too, didn’t hear anything being said for several……what seemed like minutes. I was glad that Dave was there listening for me. I worked for a major medical clinic,as you know, and tried to educate my doctor and nurse friends to pause after giving such news. They have seen so much of it that it has taken away that sharp stab from them.
    As you also know, Dave is a smoker. Every night we sat on our kitchen stoop and talked about that days post or email. I cried and cried for you , for Roger and for Dave. I prayed that your journey would give Dave the messaged that he needed to hear to get the monkey off his back. It is such an addiction. He knows. I know. No matter what you try to say and how you try to say, it comes out bitching………only making them want another cigarette.
    I believe that your blog, your story, has been used by God to show others. Maybe not Dave, at least not yet. But I believe that you have touched many with your story. You have shown us strength, love, faith courage and much more . Thank you for sharing this hard journey with us.
    DRIVE SAFE, my friend!

  28. It was so great you got to go & talk with the doctor. I remember when a patient ‘s spouse would return to talk to the doctor it would be so meaningful for both the family and the doctor. After so many visits, it was like we were family. We cared about how they were doing and wanted to give them any answers we could as well as comfort. I am glad you were able to do this.
    Some cancers can be very aggressive. No matter what kind of treatment, it just won’t respond.
    I’m so happy you will both be advocates against smoking for the upcoming conference. If only people will listen. Smoking is horrible.
    Thank you again for sharing. God Bless your family.

  29. I am a 23 year lung cancer survivor. I was “lucky” in that my cancer was the least aggressive type and was found really early. I never smoked, however I grew up with parents who both smoked in the house and in the car, then worked for a guy who was a heavy smoker. As a result I had pneumonia several times as well as annual bronchitis for probably 10 years. All of my doctors attributed the cancer to second hand cigarette smoke. I would like to think that knowing this will help someone who smokes around their family try to quit. You were so smart to go talk to the doctor the clarify things. Even though Kramer is still gone you now know what was going on his last few weeks. You are your family are in my prayers. Your loss is great and I know that you will have many hard days ahead, but I hope that knowing there are lots of us out here praying for you will help!

  30. I went and talked to the dr after my husband passed away. It answered the questions I had at the time. My husband had lung cancer as well but had quit smoking ten years prior. When I got the death certificate it said the cause was pulmonary embolism. Which created a whole other set of questions. I found that it is often a side effect of chemo which we were never told. I think there’s a lot they need to improve for cancer patients. Smokers having an early pet scan is a good place to start. Big hugs to all of you.

  31. I wonder if a prorocol to do a PET scan before starting radiation ir chemotherapy would be a good thing so if cancer had spread too far, a patient could have more information regarding aggressive medical intervention vs. palliative care. The radiation oncologist told my 91 y.o. mother, who was diannosed with Stage 3 cancer of the palate, radiation is awful and chemo is worse. She chosr palliative care

  32. I believe that when someone is ready, willing and able to give up smoking they can do it with God’s help. And with all their relatives help. And their friends. and any other sort of assistance they can find that is trustworthy. It IS an addiction, the same as cocaine, as pornography, as anything else that pulls a person away from trusting in Jesus Christ and God, Our Heavenly Father.
    I am so glad that you have family and friends around you, Jo, and childcare kids that will be looking for you again. One day at a time.

  33. Wow, I never thought about going back after my husband passed 5 years ago of lung cancer. He too, tried many times to quit but to no avail. I had been working in medicine for years so I knew what everything meant. I think it is wonderful to get smokers a screening chest exam of any kind. I think it would at least make them think about lung disease. So very sorry for the loss of your husband. God bless you.

  34. My 2 sisters both had lung cancer caught very early, they both had one lobe in one lung removed. No chemo or radiation and both died 15+ years later from other causes. They both had small spots that were too small to do any testing. The only way to test was by having surgery. If it was nothing to worry about they would be closed up, they both tested as cancer and they continued with removal. That is why it was caught so early. Lu was told all they could do was take scans periodically, after 6 months she went back to the doctor because she was having nightmares every night, she demanded surgery saying it was worth the risk, her gut feeling saved her life. But not everyone just “knows” it is cancer. She did the same thing when she had breast cancer. It did not show up on the mamo but she wouldn’t leave his office so he offered to do a lumpectomy. He was SURE it wasn’t cancer, he thought it was just another polyp. He said you could of knocked him over with a feather. It turned out that in addition to the small lump she found, when they did her mastectomy there was a second cancer next to her chest wall they had not seen. Cancer is also a sneaky disease that makes it difficult to detect at an early stage.
    Unfortunately, smoking has a negative stigma. It is okay for strangers to come up to you on the street to criticize you. finding the quit method that will work for you can be very difficult. I have tried quit smoking classes 3 times, hypnosis 3 times (2 group sessions, 1 individual), nicotine gum, nasal spray, lozenges, Chantix made me suicidal, cold turkey makes me homicidal. I haven’t completely given up yet.

    1. Lola…Keep trying. The only time you truly aren’t successful is when you quit trying. I agree…Chantix is TERRIBLE.

  35. Judith Fairchild

    To all the smokers who wrote. I appreciate that you admit the problem. Jo your going back to Kramer’s Dr. for the information you needed is a great idea. When my husband died his Dr. met with me and told me what had happened. It helped so much to deal with my loss. It didn’t see the pain just helped me understand. Gannon has certainly Grown! Such a gorgeous little boy. All your Grands are adorable. Aren’t we blessed to be Grandma’s. Prayer is ongoing.

  36. I’m glad you went back and got the answers you needed to hear and my husband was a smoker for 30 plus years and his doctor does a CT scan on him every other year. He finally quit two years ago when he retired but its still a risk factor. I hope you do get to speak at the conference, it could be so helpful for others.

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