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Living and Coping with a Diagnosis of Cancer

Discussion in 'GatorTail Pub' started by lacuna, May 2, 2019.

  1. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Over the years I have found keeping a journal a useful and productive practice. With recent massive changes in my health it helps me cope with what is currently going on in my life. As some of you already knew I am battling stage 4 cancer. Several dear friends, both here on Gator Country and elsewhere, regularly inquire as to how I am getting along, what the treatment entails, and how it is progressing. In the interest of keeping my friends informed, I asked Growl what he thought about me sharing my thoughts on my progress towards ridding myself of cancer. He encouraged me, so here is the first post accounting my battle to evict the uninvited, unwelcome beast that has taken up residency inside me.

    Please feel free to interact with me with comments, encouragements, or questions. If you know others - or yourself - who have engaged in similar battles, please share.

    ___________________________________________________________

    Life is is like the weather or the seasons in that it is full of change. Some of them planned for and welcomed, others arrive with ferocious suddenness, gobsmacking the unprepared. Trucker and I planned our move to Colorado more than 2 years ago, moving here at our adult children's request. Though we knew it would be difficult to once again pull up our roots and relocate, we recognized the necessity of the move and the rewards to be gained living less than a mile from 3 of our 6 grand kids. We spent last fall preparing for the move and after the sale of our home in Gainesville, watched the accumulation of more than 50 years of marriage - and almost 19 years in the same house packed and loaded onto a moving van for the 2000 mile trek west. As much as we wanted to make the move, it was still a wrenching painful process, akin to seeing our lives dismantled to be reassembled elsewhere.

    It was a busy stressful time for us and my health suffered. In late November the cold developed into bronchitis that turned into pneumonia. Sick as I was, I was no help to Trucker on the drive west. But he persevered and as got us here safely as he always does, though falling ill himself after the pressure was off a bit and there was time for him to ease off the grueling schedule.

    With us both ill my son, himself a surgeon here in Colorado, found a good primary care doctor to see to our needs. We rested, healed, and happily moved into our new home on the 20th of December. Our daughter from Austin flew out for a few days around Christmas to help us settle in. Our son and family here also helped and it wasn't long before the new house began feeling like 'home.'

    As things settled down and I started to relax a bit I paid more attention to a curious sensation I had started to feel in the region of my solar plexus shortly before Christmas. With the move and pneumonia I hadn't paid the pulling tugging sensation much attention. It wasn't bothering me or hurting me. But as January rolled to a close the pulling became stronger, more insistent and at times left me gasping and breathless with unexpected urgency. I made an appointment with my new doctor and after an examination and a thorough review of my medical history she scheduled a CT scan, finding it warranted as I'd had endometrial cancer and a complete hysterectomy at Shands in February, 2017.

    At that time the post op biopsy determined that cancer was early stage and completely contained within the uterus. Adjacent lymph nodes also excised and biopsied were judged "clean." Consequently the Shands doctor told me there was no need for followup chemo therapy. But cancer cells are slippery and can be tiny and easy to miss.

    The CT scan revealed a "suspected malignancy." More tests, an inconclusive needle biopsy of another lymph node, more blood analysis, and a PET scan zeroed in on the area. My son, Chris, and the oncologist he personally selected for me told me it was in a bad place for surgery. A place my highly qualified surgeon son says surgeons consider 'high risk' - between, and possibly 'touching' the lower vena cava and the aorta, also the largest lymph node in that area, and pressing against my right kidney. He consulted with one of his partners, the one he felt best qualified to remove the mass. He told Chris he could do it but there was someone more qualified than himself at Anschutz, UC's equivalent of Shands in Aurora, east of Denver. I suspect the dear man did not want to touch me, the mother of his friend and partner, with a 10 foot scalpel.

    He contacted the UC doctor who likewise told him, yes, he could do it but there was someone more qualified than himself at Anschutz. Dr Ana Gleisner. She originally trained as a transplant surgeon, later extending her area of expertise to difficult oncology surgical procedures. She agreed to take me on, after looking at the results of the tests and scans she had further ordered were completed here in Grand Junction. At this point a diagnostic biopsy had not yet been taken due to the location of the mass. The lead oncologist suspected it was seeded from escaped cells from the previous endometrial cancer, but that would not be conclusive until it could be biopsied after the surgery at Anschutz.

    The blizzard in mid March that shut Denver down, and avalanche threats closing I-70 caused more delays, but the interstate was finally cleared of snow, as was Dr Ana's backed up schedule, and we were finally able to pack what we needed into our work horse of an Expedition and head east over "the hill" for my surgery with Dr G.



    More to follow...
     
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  2. 96Gatorcise

    96Gatorcise GC Hall of Fame

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    I am crying reading this. All the best to you, Lacuna. I lost my sister (54) Jan 25th 2019 at 10:30pm She battled NSSCLC for 3 1/2 years. We were all with her as she took her last breath. It robbed her of everything.

    On a more positive note, At the same time my GF was battling NHL. Jan 2018, we received an all clear. But in Dec 2018 a scan and bloodwork showed an abnormality for the next 4 months she got radiation 5 days a week. None of the scans changed. Baffled, the docs at Moffitt called in an expert/specialist. He reviewed her records and the first thing he did was ask for a biopsy. Something the docs at Moffitt didn't do. The biopsy revealed she was still in clear. There was NO cancer. He thinks it was just scar tissue lighting up on the scans. So they basically radiated for 4 months for no reason. As infuriating as this is, we are absolutely thrilled that she is clear. Now we just have to get her body back to good health. The radiation took its toll.

    Please make sure you are comfortable with your docs and get a second opinion if you have the slightest reservation.
     
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  3. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    @lacuna Thank you for sharing your story to date, we will all be better for your willingness to share the journey, among my family and very closest friends I have lost a number, too many by miles, to brain, pancreatic and liver cancer, I had my prostate removed, at shands by a robot, some 10 years ago and have tested clear ever since (my trouble is heart related and under control as of last week :)
    I will keep you in my thoughts and send positive vibes as well... regards and never give up
     
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  4. WhattaGator

    WhattaGator Psycho Mod and Cook Shack Chef Moderator VIP Member

    Through our conversations, you know that I'm praying for you.

    Please keep us updated as you get better.
     
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  5. scrappygator

    scrappygator Moderator VIP Member

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    @lacuna thank you for sharing your story. Having never experienced this personally, I know I cannot relate. But, having friends who have gone through this journey, I do know what the ups and downs that you go through. My prayers for you and Trucker as you go on this path. Keep us updated, and we will be present with you.
     
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  6. OklahomaGator

    OklahomaGator Jedi Administrator Moderator VIP Member

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    Thanks for sharing, you have been and will continue to be in my prayers.
     
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  7. danmann65

    danmann65 GC Hall of Fame

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    My sister has a nasty cancer. Every two years she updates her medical power of attorney. I get to make the decisions for her. Basically she has what she wants to do in writing and all I am supposed to do is hand it to the docs and make sure they follow the instructions.

    She didnt want her kids to have to make those choices. I am good with doing it but every two years I have to reread the paperwork and sign it. It depresses me a bit and then I feel like a selfish jerk because my sis has to live like this everyday.
     
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  8. gatorknights

    gatorknights GC Hall of Fame

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    One of my best friends is doing battle with stage 4 as well.
    No man, you don't need to feel selfish, you're doing exactly, if not more than what you should be doing, which is being a great brother. Major props to you! I definitely understand survivor's guilt though. It's hard not to feel that way, but that's what real men do. :emoji_thumbsup::emoji_thumbsup:
     
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  9. danmann65

    danmann65 GC Hall of Fame

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    Thanks but I dont think gender plays into it. I think it's what real people do. I agree with so much of what you said but dont think my plumbing makes me more qualified than a woman.
     
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  10. kurt_borglum

    kurt_borglum VIP Member

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    I have lost a number of friends to various cancers over years. All the best to you Lacuna and keep fighting the good fight.

    At least you are in Colorado where you can buy all the dope you need.
     
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  11. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Thank you, 96. I remember you posting a few times about your sister. You lost her just about the same time I was having my first CT scan. And I feel for your GF too, as I also have a small suspicious area in one of my lungs that is being monitored. I think it is is more likely a scar from one of the 3 pneumonias I have had since 2000.

    I have a terrific team of doctors and have confidence in them. Having my son involved in making decisions in my care is greatly reassuring to Trucker and me.
     
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  12. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Thanks, Kurt. Will write about my use of pot at some point.
     
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  13. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Over the Hill and Back Home Again

    Monday, March 25 was a bright warmish spring day. We set out for Denver in the early afternoon to avoid driving into the morning sun. The reflected sun sparkled off the snow covered peaks. The resort slopes of Vail visible from the interstate were dotted with skiers. It was a beautiful day. Our 4 hour drive was broken by a brief stop at the Costco in Eagle, roughly half way between the Junction and Denver, to pick up a few things we would be needing.

    We reached Denver just before rush hour and found the interstate through the city clogged with traffic. It took almost an hour to reach Aurora on the east side. After checking into our hotel, a quarter mile from the hospital, our son Chris joined us for dinner at Ted's Buffalo Steakhouse. He had rearranged his own surgical schedule to be with us during my surgery. His wife and 3 children came also, but separately and arrived several hours later.

    With anxiety building I could not eat much and most of my buffalo pot roast dinner both Trucker and I had ordered went to waste. No food or drink after midnight and an 8 o'clock am check in for the 11 am surgery. Things went smoothly, efficiently as my blood pressure and other vitals were checked. I met with the anesthesiologist and met Dr Gleisner, who would soon hold my life in her hands. The meeting confirmed my confidence in her skills. She was personable, kind, and I liked her.

    After kissing Trucker, Chris, and his family, I was wheeled into surgery pretty much on time for what was a 3 hour surgery I was later told. Once the drugs in the I.V. began to flow and do their job it seemed no longer than a blink of the eyes before I found myself awake in recovery. The critical care unit would not have a room for several hours so visitation was limited until I was transferred. When I got into the room I was greeted by my D-i-L and 3 grandchildren sitting wide eyed and quiet on the sofa and chair in the small room. My son had to leave earlier to make the drive back over the hill to resume his own schedule the next day. His wife and children stayed in Denver another night, stopping by the next morning before heading back to Grand Junction.

    Before Chris left he spoke with Dr Gleisner about what she had found and done. The mass was about 2" by 1", and as feared, attached to the lower vena cava. She removed a large portion of it but did not attempt to excise the portion connected to the vena cava. It is not something easily removed. To do so would require a replacement / reconstruction of the compromised section. High risk, something she was capable of doing, but wanted me to make the decision knowing the risks. The excised portion was divided and sent to pathology for analysis to determine its type, source, and risk. It would be several days before we knew the results.

    I was discharged 2 days later, and armed with a canister of oxygen to ease me over the mountains I steeled myself for the long drive home. My dear husband lowered the back seat of the Expedition and placed an inflated Aero bed in the back so I could lie down for the duration. It certainly helped, but I felt every unavoidable bump on the winter roughened roads. I cried out more than a time or two, but it was okay. I was alive, and I was going home.
     
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  14. kurt_borglum

    kurt_borglum VIP Member

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    I guess bypassing the bad section of Vena Cava like they do with a heart bypass wasn't possible?

    I think I remember a porn star in the 70s named Vena Cava.
     
  15. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    I don't know the intricacies of what would be required, but the cancer is rooted into the walls of the vein so it necessitates it be excised and replaced with another piece to function in its place. Whether it would be an artificial vein or a piece of donated tissue, I do not know. It's the major vessel returning blood circulating in the lower body back to the heart. The risk comes with the massive volume of blood being released after it is cut before the flow is redirected into the replacement vein. The aorta runs parallel in this area of the body, like the index and middle fingers. It would be extremely close work.

    Low life ;) :ninja3:
     
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  16. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Findings and planning

    By the middle of the following week I was able to sit up in the car for the shorter ride to the office of Dr Joanne Virgilio, my lead oncologist. I affectionately refer to her as Frageelee. Trucker thinks she looks a little like Elton John, a bit overweight with a slight separation in her front teeth and short brown hair. I see it, but will stick with Frageelee. Chris joined us for the lengthy consultation to discuss the results of the biopsy and plan a strategy to beat the beast. The pathology report confirmed Frageelee's suspicion that it had metastasized from the endometrial removed 2 years prior at Shands. There was good news and bad news. Good news - it was determined it is a carcinoma rather than a sarcoma, which bettered my odds. Bad news - it is an aggressive cancer. Good news - it is a disorganized cancer, doesn't have its act together, so is more susceptible to eradication.

    My choices for treatment boiled down to 2. Have the risky surgery - or take on the beast with chemo and radiation. If I opted for chemo/radiation, surgery would no longer be an option as the brutal chemo/radiation treatments would weaken and damage the affected area too much. The already low odds for a successful surgery would then be 0. I had already decided against the surgery so now the strategy was to find the right balances and proportions of the two toxic therapies.

    Complicating matters was the neurological disorder I have had for several years. Among other things it has robbed me of my stability and balance. I walk using 2 canes. Without them I lunge and stagger like a baby taking its first steps. It baffled the neurologists at Shands as they were never able to determine what caused it, or to even specifically diagnose it. The symptoms are much like those of MS and I have a few markers for that disease, but not enough of them to slap it with an MS diagnosis. They also found markers for lupus, same story. Not enough to say it's lupus. After all the frustrations and tests the Shands neurologists concluded I have "idiopathic peripheral polyneuropathy." They don't know what caused it but believe it is an autoimmune disorder.

    Unfortunately for me the most effective chemo - carboplatin - for my particular cancer also has been found to worsen the symptoms in people with similar neurological impairment. Frageelee wants to cure me, not permanently cripple me. After researching and consulting with other oncologists, she decided on a protocol developed and successfully used on people like me at M D Anderson Cancer Hospital in Houston, TX. The initial series of treatments would last for 6 weeks. On Mondays I would have the once a week carboplatin infusion followed by the radiation. Tuesdays though Fridays is radiation only. At the end of the initial phase another diagnostic scan will determine how much progress has been made to evict the beast. Treatment will be adjusted as needed.

    And the last good news. Apparently I am among the one in 20 with a cancer that responds to immunotherapy treatments. An appointment with a geneticist/ oncologist will confirm that finding this coming week. If so, that may be an option after the initial chemo/radiation treatment schedule is concluded.

    The next step - preparing for chemo / radiation.
     
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  17. gatorknights

    gatorknights GC Hall of Fame

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    Hoping for the best, Lacuna! :)
     
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  18. LoyalGatorFan

    LoyalGatorFan GC Hall of Fame

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    Prayers lifted!
     
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  19. gatornana

    gatornana Administrator Moderator VIP Member

    Apr 3, 2007
    Lacuna, you've been in my thoughts and been sending all my well wishes, positive vibes and prayers. I like to cover all the bases in times like these. You're strength amazes me......you've got this!
     
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  20. danmann65

    danmann65 GC Hall of Fame

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    My thoughts are with you and your family. It sounds like you are making the hard decisions with your family by your side and with professionals who you trust and deserve this trust.

    I like to think that their is a correct solution to every problem but as I get older I realize there isnt. Live your life with as much gusto as you can for as long as you can.
     
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