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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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    Gatorhead, thank you for this heartfelt post and forgive me, please, for my tardy response. There have been no recent entries as I contemplated what direction I wanted to go with this thread, or even if I should continue with it now that I am in remission. Your post is one of the reasons I've decided to make further entries. At least for a while.

    As you wrote, those of us posting on this site share a wonderful bond. No matter what differences we might have in myriad other divisive ways, we share a love for our fellow Gators and for the singular university that has made it possible. It is a noble association and I am grateful to be part of it.

    Over the past 17 years I've been posting on GatorCountry I've been privileged to 'virtually' interact and become friends with a number of regulars some of whom have been around for as long, or longer, than I. And fortunate to meet IRL a handful more. Some of us probably spend more time on here than is good for us. But we are a community of Gator fan friends who are here for each other when we are drawn to share through this medium what is going on in our lives away from Gator Country. We've been here for each other in thought, spirit and prayer through many sadnesses. We've rejoiced together for our joys and successes. We share because we care.

    @Gatorhead ~ thank you for the reminder.
     
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  2. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Before I started posting about the diagnosis, surgery, and treatments that were yet to come, I played with several possible titles for this thread. After discarding the others for various reasons, I decided to simply state what it was intended to be - a journal of what it was going to be like to live and cope with cancer. Even as I made a decision on the title, I now realize I was in a state of denial, evidenced by the inclusion of the word diagnosis. A subtle distinction, perhaps subconsciously designed to distance me from the sobering reality of the situation I was now facing. However, one does not live and cope with a diagnosis. One lives and copes with the disease.

    The unwelcome diagnosis was unexpected, though perhaps the recurrence of the disease not so much. After the excision of the previous cancer at Shands 2 years earlier in February, 2017, further treatment was not prescribed as the surgeon was confident he had removed all of it. Through no ones fault but my own, I had only 2 followup visits with the surgeon who removed the original cancer. A third was pre-scheduled 6 months post surgery when Trucker and I had plans to take a lengthy trip. I cancelled the appointment intending to reschedule. I never did.

    It was the middle of 2017, a year after the suicide deaths of our friends, and we were caught up in discussions trying to decide whether to remodel our house or move to Texas or Colorado as our children had requested in late 2016. There was no time or thought given to a recurrence of cancer. It was gone.

    After we made the decision to move rather than remodel I began to sense a shift in my expectations for my own future. Part of it was recalling a vivid dream I'd had 30 or 35 years before. It was one of those rare, never to be forgotten dreams that for whatever reason stick in memory. I dreamed my great uncle Jack had moved to a new house. Early the next morning my mother phoned me to tell me her favorite uncle had died suddenly, the night before. I have never again had a similar dream about any other deceased person.

    Despite an increasing tension, I wanted to make the move. We needed to make the move. Though daunting, it marked a change that was necessary and could not be avoided. It was as inevitable as one year following another, the closing of one chapter and the opening of another. I sensed it would be the last chapter. Still, I welcomed it with cautious anticipation, not knowing how long it would last or what it would entail. Whatever the reasons, it was going to happen. Would I have input in writing this saga, or was I only to read it?

    For a week or two I thought the last chapter might find its completion those 2 or 3 weeks in December when we physically moved from our Gainesville house and journeyed to our new home in Colorado. Pneumonia had laid me low and I could not help but remember both my parents had died from it. My dad had Alzheimers complicating his fatal bout, and my mother had contracted pneumonia while recuperating from surgery to repair a broken hip. She also had congestive heart failure for several years prior to her death. What was my fate to be? Or not to be?

    As I recovered from the pneumonia, before the cancer recurrence was discovered, I enjoyed the heady early days living here in Colorado. Having 'survived' the pneumonia, I realized the dream may have been coincidental, a one time premonition that had no connection with my own move to a new house. This was underscored by another dream I had soon after my surgery at Anschutz in March. I dreamed my great uncle Jack and his late wife, Aunt Connie, had moved into my home and started to redecorate it. I didn't like the changes they were making and woke up, putting a stop to the changes. The last chapter was still being written.

    With a sense of relief and as I was able, I continued with the pleasant business of decorating and putting our house in order. We were home.
     
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  3. gatorknights

    gatorknights GC Hall of Fame

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    In all kinds of weather...:)
     
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  4. defensewinschampionships

    defensewinschampionships GC Hall of Fame

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    So mom is going in Thursday for her third of four treatments on the second dose of chemo. Must be working because the golf ball sized tumor is now pea sized. Those were the exact words of the Oncologist.
    Double mastectomy will follow, along with radiation.
    Hope you are well @lacuna
     
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  5. gatordavisl

    gatordavisl VIP Member

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    I didn't have the heart to open this thread until today. That's not personal against @lacuna - quite the opposite. I just didn't want to read about another good person suffering. My own form of selfishness. In 2007 I was seemingly on top of the world; enjoying a second run in Gainesville, not only with the sports victories, but with the joys of being a student again. Playing music. Learning at the highest level - preparing for doctoral qualifying exams.

    Then one day my Dad called and said that he had brain cancer. I had lost a cousin to cancer, but this was obviously different, esp. when I read about the kind of cancer he had (there are no happy endings). He opted out of treatment, choosing to save money. That call came in April and he was gone in September. To top it all off, he left his estate to my stepmother. Not a single penny to my sister and I. Perhaps it was not his intent. He didn't know she would remarry less than one year after his passing.

    But this thread is not about me, my sob story, or my family. It's about one of our great GC family members. I don't have the heart to read through this thread, but I did read the word "remission" in a recent post from Lacuna and that does my heart good. God bless. I send every available wish for peace, comfort, health, and happiness.
     
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  6. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Davis, thank you for this. And please know this is about you. It's about all of us and how we deal with the unspeakable heartache of cancer, ours or a loved one's. It's intended to bring hope and encouragement. I know I have certainly received both from our GC friends who have contributed.

    Your loss was particularly poignant. On top of the world enjoying life and preparing for your future, then crashing with the loss of your father. I applaud his courage in the face of death. He met it on his own terms, not fighting its finality. He is gone, at peace, returned to Source. Ecclesiastes 12:7

    The bitter taste of the loss yet lingers for you, with your injury magnified by the insult. Perhaps writing about it on this thread, as you have, will bring cathartic closure. I pray for your peace.
     
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  7. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Fabulous news, defense. I know she must be encouraged. Keep hangin' in for her, despair may set in as the surgery approaches. She will need your reassurance more than ever. You can do this for her.
     
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  8. gatorfan5220

    gatorfan5220 Premium Member

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    Remarkable, touching stories from you all.

    I have heard it so often - old age is not for the meek of heart.

    Speaking of which I go in for an ablation early January. Doctor put me on meds saying I have a weak heart. My gosh, I've developed heart problems late in life. I've beat cancer now this.
     
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  9. grayg8rstevo

    grayg8rstevo VIP Member

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    Prayers are heard. Miss Lacuna has work to do here with us.
    And we love her and thank her for staying with us. Truly, we do.
    Love you dear heart. HAPPY THANKSGIVING.
     
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  10. Gatorhead

    Gatorhead GC Hall of Fame

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    Fellow Gators -

    Heartfelt best wishes and hopes that the Thanksgiving Holiday brings happiness, fellowship, family and (hopefully) a physical reprieve...…….. for all of you. (us)

    Thank you for sharing your stories. Thank you for persevering in the most difficult of circumstances, thank you for being family, because we are ALL Gator's and human beings struggling through this amazing, wonderful, hard, crazy thing we call life.

    For those struggling, please know that you are not alone. Love still exists in the world even for the unacquainted.

    I too suffer from a chronic disease, type II diabetes, and of course for being a complete nut job, however these are small change compared to what most of you are going through.

    This forum is especially important to me, I come here to "re-orient" - to better understand what is REALLY important when compared to the "dreck" that so often surrounds us.

    Be well friends,...……….. be well
     
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  11. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Thank you Gatorhead. We had a lively Thanksgiving at the home of my DiL's parents who live in the next little town north of here - Fruita. Likely named for the many orchards in the valley. There were 18 of us, Trucker and me, our son, his wife, their 3 children, her parents, 3 siblings and their families. They came from as far away as Los Alamos, NM; Houston, TX; and Grand Rapids, MI. Oh yeah, 2 teen girls who are sisters and friends with my grand daughter, with no other place to go. Sad story.

    As head of the family with the more people coming from other locations, d-i-l's parents arranged the day and appropriately wanted the feast held in their home. It is the smallest of ours, theirs and theirs, and some - most - members of the local family objected, pointing son's larger house could accommodate everyone more comfortably. Out of respect and tradition my son agreed with his in laws and we all went to Fruita for the holiday. In its favor, the Fruita home has a large bedroom dedicated to games and company, and rousing games of 42, played with adults and children went on much of the day. The closer quarters had us stepping out of each other's way, dodging a stray kid here or there, avoiding politics, but everyone had a good time and most of the food was good. Another story.

    How was yours - everyone's? Any interesting or funny incidents? I hope all were happy and memorable.
     
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  12. gatorknights

    gatorknights GC Hall of Fame

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    I flew solo. My immediate family is spread around the nation, with most of them being in the Minny Apple.(MN) My BIL just had major back surgery and my SIL is under the weather while caring for her husband. No worries, though, had a great conference call with the home folks back up on the tundra.
     
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  13. defensewinschampionships

    defensewinschampionships GC Hall of Fame

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    So right before Thanksgiving my mom rang the bell signifying that Chemo is over. She has surgery Dec 19, radiation, and hopefully the all clear.
    Hope you are doing well @lacuna
     
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  14. g8rtrucker

    g8rtrucker VIP Member

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    Ringing the bell is such a big milestone. Congrats on your mom reaching that point. Our prayer is that all continues to go well in her recovery and that you hear that blessed word remission in the near future.
     
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  15. Gatorhead

    Gatorhead GC Hall of Fame

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    Hoping everyone had a great Christmas. My boys came home for the Holiday so I'm happy, that is a wonderful Christmas present! Wishing a great 2020 to everyone, improved health and of course happiness!
     
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  16. Gatorhead

    Gatorhead GC Hall of Fame

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    Hoping everyone had a great Christmas. My boys came home for the Holiday so I'm happy, that is a wonderful Christmas present! Wishing a great 2020 to everyone, improved health and of course happiness!
     
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  17. Gatorhead

    Gatorhead GC Hall of Fame

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    I decided to double down …………… lol ……...sorry hit "post" 2x.
    Special hello to lacuna! Bout time you sent us some pics of you skiing on those mountains!! My idea of a good "ski" is going down the run on a garbage can lid! Very mild Xmas in Philly but that's A- OK!
     
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  18. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Time for end of the year catch up as it's been a while since I posted and there have been changes.

    Trucker did go to Florida in September to meet the guys for golf and the Towson game. He was gone about 12 days and he had a great time as he needed and deserved a break from me. We missed each other but we both needed the time for our own reasons. He does much for me, even doing things I can do for myself some of the time. Granted he can do them more quickly, more efficiently, but I need to be able to successfully accomplish what I can physically can. It's good for my self worth which at times is low. I did have people looking in on me. My 16 year old granddaughter spent 3 nights here and the other grand children visited through out the week. Daughter-in-law and son were in and out and my housekeeper spent a night. She and I sat up late, smoked a little weed, and chatted like a couple of teenagers having a sleepover.

    Trucker and I both had time to think in his absence. We both gave thought to what it would be like for one of us to lose the other, our 12 day separation underscoring that inevitable eventuality. We had avoided talks of this sort, perhaps hoping the denial would prevent that time from occurring. But as it has been said - death and taxes. The day will come. We faced up to it, expressed our wishes, and made the difficult decisions that needed to be made. God willing we will have more time before they need to be carried out.

    Though as far as I know I am still in remission from the cancer, my health has deteriorated. I posted briefly on another thread about edema in my legs and how I was not able to eliminate it with the use of diuretics. Blood chemistry indicated I was not in heart failure but it was a threat if protein levels in blood increased. The sad truth is the aggressive radiation treatments compromised my lymph system in the area of my abdomen where the tumor was located. The main lymph node was right there also being bombarded and is now non functioning. I have lymphedema and there are moments when this last straw has come close to crushing me.

    My legs, mostly calves and feet are swollen 2 to 3 times normal size and will never appear normal again as the condition is irreversible. To stimulate the lymph to move towards functioning nodes I wear compression leggings and wraps that help keep the fluid from accumulating. Manual massage also helps as lymph flows and bathes cells near the surface of the skin. Trucker helps me massage my legs once or twice a day before I wrap them. In about 2 or 3 weeks I will have a compression suit and pump that will entirely encase my legs and abdomen. I will wear it for one hour once or twice a day to stimulate the flow of lymph upwards to functioning glands in my upper chest and neck where it can be transferred to the blood for elimination.

    This new and unwelcome protocol has further changed our lives. We like to travel and had hoped to make a few trips we had been planning for the future when my health improved. This new complication makes air travel near impossible. Even driving over the Rockies is problematic as I can't tolerate the higher altitudes. We are recently returned home from visiting our children and grandchildren in Austin over Christmas. Rather than open myself to the risks we might face by traveling east over 'the hill' then south, and the reverse coming home, Trucker drove us west into Utah, then south through Moab and the Navajo reservation into Arizona before heading south and east through New Mexico. It added a day of travel and an additional 350 miles each way, but made things easier for me.

    The passes through the Rockies are over 11,000 feet. The highest altitude we encountered on the route through Moab is slightly over 7000 feet and it stressed me. Austin is around 900 feet and I experienced great relief at that altitude. Our altitude here in the Grand Valley is 4400 to 4500 feet, but I know it is manageable for me and having the compression suit will also provide additional relief.

    There has been another crushing disappointment. We are going to lose much of our treasured view from the back yard and patio. When we looked at this house before we made an offer for it in August, 2018, we asked about the vacant land immediately behind the house. We were told a few homes might eventually be built at the top of Easter hill to our east, but the land behind the house was owned by the local water company and a canal ran through it supplying irrigation water for residents during the warmer months of the year. The land between the backyards of the houses on our street and the canal was uneven and un-buildable. Not to be concerned. A mistake, bad mistake.

    Turns out a portion of that uneven, unbuildable land is privately owned and the developer is going to level it and build homes that will steal my sunrises and at least a portion of our view. I am devastated at the loss. Our neighbors on either side are talking about building stone fences 8 feet high to try and maintain privacy from the homes that will be built about 12 to 15 feet higher than ours. We may do that too, or plant a thick hedge of arbor vitae as a screen.

    Below is a link to a bird's eye view of the terrain behind the neighborhood. The entire vacant area is over 175 acres and criss crossed with hiking and biking trails. If you pull out and scroll south you will see the water tower I mentioned in post 87 on page 5. The gnomes were hung in the cedar trees on the top of that ridge. Our son's house is on Caprock Drive, south west of the tower.

    Google Maps
     
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  19. gatorjjh

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

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    Thank you for your update @lacuna as they say and we both are learning getting old is not for sissies. I am hoping that time and your therapy regimen will help at least some with your injured lymphatic system the swelling side of it sounds devastating to me. My wife and I have had brief conversations about living single after one of us departs, the loneliness is the hardest. I am saddened to think of your coming loss of a beautiful vista I know we have worried for years that the pasture that borders our western boundary will be turned into something more lucrative, if it has to happen we are hoping for a golf course instead of a housing development.
    You know you can count on continued moral support from afar here on GC do keep us posted....
    JH
     
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  20. creekgator

    creekgator GC Legend

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    Lacuna: Thanks for the invite to this forum. As I read through all of the posts and your journey the one thing that struck me is the goodness of people and the common bond we share as part of Gator nation.
    I was diagnosed with stage 4 esophageal cancer on 10/3/19. Had trouble swallowing food and went in for an upper GI. I was totally blindsided by the finding but still made the trip to Gainesville for the Auburn game , the Florida/Georgia game, and Vanderbilt.The next few weeks were a whirlwind of scans and tests to stage my cancer and come up with a treatment plan. Fortunately I have great insurance through my employer and living in Metro Jacksonville have access to great treatment options. I chose Baptist MD Anderson Cancer Center for my treatments which began in mid-November.
    My cancer is at the base of the esophagus where it meets the stomach..probably caused by acid reflux. My PET scan also showed a small area on my adrenal gland that was suspicious..otherwise everything else was clean. They tried to biopsy the adrenal nodule with a CT guided needle biopsy. Unfortunately my blood pressure tanked when the 18" needle was about halfway there so we have never confirmed whether it is cancerous or not. My Oncologist said we will assume that it is and proceed with treatment as he did not want to delay treatment. I am on a chemo protocol called FOLFOX which is a combination of 2 drugs and a third agent which makes the drugs more effective. I am infused every 2 weeks for 4 rounds, my 4th round is tomorrow, and then 2 weeks later will have a CT scan to see how I am responding.Other than that I have about 3-4 days in each 2 week cycle where I feel like crap. Best description is that it is akin to the worst hangover you ever had. The rest of the time I feel pretty good and live a normal life.
    My hope is that someone who reads this that has acid reflux or any other symptoms gets tested before this beast is unleashed.
    For now Go Gators..beat UVA..and Lacuna..be well you are in my prayers
     
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