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Scruboak

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Posts posted by Scruboak

    New Here - Husband has Lung Cancer - Not handling it

    in INTRODUCE YOURSELF!

    Posted

    When my husband was diagnosed with chronic lymphocytic leukemia 7 years ago,I remember our shock as a long married couple - a “ this is it” kind of shock. We were both devastated. But, it wasn’t “ it” and he’s still around and doing quite well. My lung cancer diagnosis created the same chaos for a while. I’ve come to believe that cancer often can be treated like a chronic condition - it IS just a part of our lives. I wish all the best for both of you. There is a national suicide hotline that you might want to check out for your own peace of mind. Just dial 988. They can help you with your own worry and will be able to inform about preventative measures. Love to both of you. Suzan

    Some resolution

    in MEMBER UPDATES

    Posted

    12 hours ago, Karen_L said:

    Go, you! Excellent work on that biomarker testing. 

    A six-month wait on a nodule that has shown signs of growing? Hmmm. That feels a little long to me.... Is there an option for yet another opinion? Or even a repeat scan in 2 months rather than 6? I guess this means *you* would get to do more legwork (oh, yippee, right?) but waiting around until something happens *TO* you seems like medicine that's  more convenient to the docs than to your well-being. 

    Right?! Except, the second radiologist never went back to measure the first nodule - I did with the electronic calipers on the Ct images. And, I’m not a radiologist. I’ll go with the biomarker testing but when I hounded the thoracic surgeon she had her med assistant write back “discussed your previous message and questions/concerns with Dr. Erickson. She did confirm that these were two separate areas of mucus plugging, not new nodules. Nothing to be concerned about.”  I’m going for a hike to distract - it’s harder for me to accept without questioning because It took a long time for the docs to go ahead with the VATS surgery when the initial tumor showed up incidentally on a Ct for a kidney stone. They kept characterizing it as “atelectasis”. It was during the COVID crisis and was considered to be an “elective surgery”. I’ve looked at “ mucus plugging on CT” and these areas on my scans don’t really look like anything that is pictured online. But, I’m not a radiologist😂

    Some resolution

    in MEMBER UPDATES

    Posted

    My last two Ct scans were confusing as the second radiologist identified a new nodule and didn’t comment on the one that was there six months before. My thoracic surgeon was puzzled, talked to the second radiologist and they agree that it’s likely there is some “mucus plugging” in both bronchi. (Which kind of concerns me because I have invasive mucinous adenocarcinoma - but what do I know😂) The first nodule has changed shape and is just a bit larger but still very small 5x4.  I was to move to annual scans 6 months ago but will stay on six month scans until this resolves. The really exciting news is that I’m getting some biomarker testing done - may have to pay out of pocket but CU Health will run it by insurance anyway. The director of the program has been in contact with me and says that she can do a panel to see if KRAS is present. If it is ( and IMA of the lung has a high KRAS rate) then she will stop there. If not KRAS, they will continue with full panel.  It feels good to be an advocate for myself - the “e” word, ya know, empowering.

    Well, this is confusing

    in MEMBER UPDATES

    Posted

    59 minutes ago, Karen_L said:

    Good choice in reading, Suzan. There's something comforting in Gamche's goodness. 

    Keep advocating for that biopsy-- such good thinking to ask if the original sample could be tested. Even a liquid biopsy would be a positive step. And your surgeon or someone in their office should go to bat for you with the insurance company!

    It's weird to shift from being a passive "good" patient to an assertive person firmly engaged in your own care. That shift itself would keep me up, let alone a patch that's sent up a new nodule. Waiting is really hard. Deciding to take action is really hard, and taking action...well, that usually sends me under my bed in fear. Unfortunately, we seem to need to be able to do them all, simultaneously. (And, sadly, not from under the bed.)You matter and you deserve good care.  You can do this. We're with you!

     

     

    “Noli timere” Be not afraid. Det. Gamache

    Well, this is confusing

    in MEMBER UPDATES

    Posted

    Can’t sleep so here I am wondering.  I was able to get my CT scan two days ago and saw my thoracic surgeon today.  The pathologist identified a nodule, said it hadn’t grown but both me and my physician realized that he measured the wrong nodule! So, it now appears I have two nodules in about a 2 cm area. The original nodule has appeared to grow larger. Thoracic surgeon is supposed to talk with the pathologist and get back to me. I also asked if it was possible to use the original tumor nodule to obtain bio markers and possible mutation drivers (that didn’t happen the first go round because I was told that stage IA2 didn’t qualify for the testing).  Invasive mucinous adenocarcinomas carry a high rate of K-ras D and V mutations and I’d just like to know.  Surgeon stated it could be done technically but didn’t know if insurance would cover it. Oh, just thanks for the midnight ramble.  I’ll lay here and do my breathing exercises. Love to all, Suzan

    Oncology counseling

    in MEMBER UPDATES

    Posted

    15 hours ago, Karen_L said:

    Just a note to say how much I understand what you've been going through! The head games cancer plays on us....But you've done well by finding someone who can support you into brighter territory. Keep us posted!

    I love the use of “brighter territory”, Karen. ❤️

    Oncology counseling

    in MEMBER UPDATES

    Posted

    I decided that I needed some help emotionally with all this cancer crap and contacted a therapist who specializes in counseling people with cancer. The therapist had leukemia 9 or 10 years ago and decided to focus her career on helping people with cancer. I am a retired clinical social worker and, of course, thought I knew all the skills. It became clear to me that I haven’t been using these skills - knowing what to do and actually doing that are two different things altogether.  So, I now have someone to keep me accountable. The first thing I realized was that I have been doing a mind f*** by believing everything I think and the second is that I have been giving the negative thoughts way too much weight.  I was so miserable that I was sleeping my afternoons away just to get away from myself. I have a “joy” list and have to do something from that list every day.  My next scan is early December to follow a new nodule. It could just as easily be gone entirely in contrast to my previously held conviction that it was growing, growing, growing. I think a huge blessing about getting cancer is that it helps us learn the power of “letting go” something that we mortals all have to grow towards with or without cancer. And, yes, I still have fear. 

    How active are you in the real world these days?

    in MEMBER UPDATES

    Posted

    I’m just now 2 weeks post covid and tested negative two days ago. And, I’ve been careful but obviously not careful enough. Vaxed and boosted except for the new bivalent  which I’ve been told I have to wait a couple of months for due to recent infection. I think it happened when we drove up to Wyoming to pick up a nephew who had just finished a paleontology dig.  Still lots of overwhelming fatigue - up for several hours then have to rest. So, be careful and do what YOU need to do. Let me know if I seem brainfogged, would ya? Weird days we’re living in.

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