@Gumpus61 it was absolutely not too direct. It is your and your wife's reality. Just as it was mine and my husband's until 4:46 PM April 24, 2016. How very ironic -- we are unwillingly thrust into this world of cancer caregiving and yet ultimately may be just as unwillingly plucked from it.
My Goodwill
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Gumpus61 posted an update
Thanks everyone for the positive acceptance of my Blog Post.......I was afraid it was too direct, My wife read it before any of you did.....she said "it's the terrain in which we find ourselves deployed"......well that's my Cancer Partner !
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Gumpus61 posted an update
Well gang....two years since Cancer joined our lives. Our care....excellent in every way. Were recurrent right now, but chemo is having good effect.....at least on the cancer ! There is a benign power in this disease, it seems to wear out friends....there isn't a moment you put your finger on......but suddenly your lonelier than you want to be. Were stronger in our resolve to live well....and were doing it. Just wish more friends could see past the way we look and feel and share moments as before. So while we watch it wear on others...........we don't let it wear on us so much.
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Saok1969
about 3 years agoI found it really interesting that while I was undergoing treatment, I got cards, texts, calls, emails, etc. all the time. Now I'm a month out from my last treatment, and all of that has stopped. I'm still having side effects, still bald, still tired, but no one checks in any more. It's not really "over" yet, but I guess everyone else thinks it is. Strange.
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Sblackshear
about 3 years agoYes, I am beginning to see the strain on friends & family after 15 weeks of chemo, after today only 3 to go! The whole process is a drain on everyone's stamina, conversations get akward....we can only focus on the here & now & they seem to feel guilty for talking of the future. I am happy for them, but there is defiantly a slight disconnect that I hope will disappear when the NED finally arrives. @ least that's where I am right now. Always good to hear others are staying strong even in recurrence, wishing you peace & love on your journey.
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Gumpus61 posted an update
Hey Gang, 26 months ago we were stricken with a rare and "uniformly fatal" type of Cancer. primary Peritoneal Cancer stage 3C, not unlike Ovarian cancer but tends to be "well Distributed" by the time it is found. 6 months of dense dose chemo and surgery bought us 14 months of freedom. Then the disease returned, with a vengeance. 4 months of chemo appear to have beaten the little heathen back deep into it's Lair.....we may be afforded a second remission.........Thanks to all who prayed for Us, thank you to Dr. Liu and her team. Once again I can say, Cancer will not kill us today, tomorrow, this week or next month.
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Gumpus61 posted an update
Well Gang, Finally hit the wall on Carboplatin.....got in 4 and a half of 5 doses before allergic reaction set in........one more blast of tamoxifen and we will see if we have won round two.......stay tuned.
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Gumpus61 posted an update
Hey Gang,
Well, recurrent disease is responding to the carboplatin and taxol Again....CA 125 down from 1500 to under 10 after 4 treatments.....a little tired but hanging tough.
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Gumpus61 posted an update
Hi Gang,
Were two treatments in to round two of recurrent peritoneal Cancer. CA-125 is dropping like a rock so chemo is keeping us in the game. never occurred to me to think that being sensitive to the chemo meant it was as hard on us as the Cancer.....but that seems to be the case. Bought a travel trailer and spent a weekend on the Lake Michigan shoreline picking up heart shaped rocks.......
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Gumpus61 posted an update
After 15 wonderful months of living our Peritoneal cancer has returned. Inoperable, well distributed. Starting platinum chemo in soon, Ann is Platinum sensitive and were going to enjoy many more wonderful days together. I know we all talk of prayer and Praying for each other. Here is My Prayer for my wife Ann.
A Prayer for Ann,
I am in awe of the wonder of the Universe and our Journey through it. I believe in the magical and spiritual power of Humans to bring positive outcomes to difficult circumstances. Please Share with me a gentle beseeching in the wonder of humanity, to give Ann Peace and Strength.
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Gumpus61 posted an update
Well gang.......CA-125 of 430 from 6 in just 90 days, Cat scan showed major organs and abdomen clear, Next blood test to verify the first one has CA-125 doubling in just two weeks from 430 to 880.....safe to assume there is something bubbling around somewhere.......Assuming a PET scan to follow. Sigh......
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Gumpus61 posted an update
Well here we go.......slight uptick in CA-125 last exam has us checking again after 90 days....that's tomorrow. One way or another the answer is going to be " A Guarantee of life" for some period of time.
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Gumpus61
over 3 years agoThese are the worst days for us caregivers, were just as helpless as you guys, the road is just as hard. I think that the ability of cancer patients to engage in a little self serving denial is a miracle and should be accepted.....not an option for the caregiver.....at least not for me.
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Gumpus61 posted an update
Well Gang, after a 14 month run of disease free living our latest CA-125 is 450 plus, higher than the 350 at the time of diagnosis with Primary Peritoneal stage 3C. CT scan to follow. Positive take away for now is that Ann responded well to Carboplatin. Were pretty much in the same boat as You Ladies dealing with Ovarian Cancer. I would love to hear from some of you who might be managing the disease with low dose chemo.......
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Gumpus61 posted an update
9 months from NED......CA-125 from 3 to 6 but cat scan clear....the wind whispers by the sword of Damocles again and leaves it undisturbed.
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Gumpus61 posted an update
So.......My lovely patient and wife of 34 years saw Cancer arrive and a merger blow up her career at the same time. We came home to Michigan and battled away for 14 months. Today Ann is moving to Dallas to resume her career right where she left off. There is No evidence of her Stage 3C Primary peritoneal Cancer. Sure.....there are a few more nicks and dings, But all things considered......YEEEEE HAAAA !!!
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Gumpus61
almost 4 years agoThat's the Nicks and dings part...........Of course there are other manifestations. It used to be if she asked me if I wanted onions in my soup and I said no......there would be no onions in the soup. Now......she asked the same question and I gave the same answer......but there sure as heck are going to be onions in that soup !
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Gumpus61 posted an update
15 months ago we began a journey that started with a diagnosis of a terrible cancer that kills most of its patients in 18 months. Chemo surgery and more chemo. career gone....sense of self gone....so much gone forever. Today we are NED.....Her career and sense of self have returned.....Sure cancer is still in our thoughts, but not in a frightful way......Some people get well.....and that is why the medical professionals always favor the best treatment they understand and can provide.....I remember the genuine joy in our doctors voice when she announced us NED. Think of how you would keep going in a job where despite your best efforts so many of your patients die. I for one appreciate their challenges. So......Thank you to Dr Leiu and her team at St Josephs and U of M. This is twice these institutions have given our family life....once with my premature son and now my wife. THANK YOU from the bottom of my heart.
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Gumpus61 posted an update
Some folks seem to think that NED is just temporary, that Cancer is never over. But NED means to my wife and I that Cancer is over for today, that Cancer is over for tomorrow, next month and next year......what guarantee is better than that ? Can you tell me I wont be hit by a bus, or suffer a heart attack ? NED means cancer is over for now and I can celebrate that.
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Gumpus61 posted an update
As a care giver dealing with the potential of losing my wife of 33 years.......I coped with caffeine, booze. and cheeseburgers.....smoked a little too much medicine too. Now that I realized she is going to live I have decided to do the same......5 of 20 lbs that have to go are gone....treadmill is getting a workout.....I know a care giver can't catch cancer.....but we can get just as sick along the way.
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Gumpus61 posted an update
I can see that cancer steals more than life, it steals relationships too. It never occurred to me that a husband might take a selfish path in the face of such adversity, but having shared my wifes cancer, I can understand that some do take a selfish path. I think a couple of things helped us through. We had already suffered from and overcome adversity....miscarriages and premature bables, heart attacks and financial struggles. We were married in the old Fashioned way and made vow's before God......we aren't church goers really......but a vow is a vow isn't it ?
I am looking for the words to help all of you with the terrible things that your caregiver husband thinks and feels.....and has to deal with all by himself. I alluded to it with a post a few days ago.....whereby Cancer makes Patients smarter and care givers dumber..........A Public forum is no place to share those things, I think the Institution that is cancer care owes this subject a lot more consideration. Were still together and will be forever.....but it wasn't easy for either one of us.3 Comments-
GregP_WN
about 4 years agoI agree, "a vow is a vow". It amazes me how many times the subject comes up of a spouse leaving during times of a crisis. Talk about a "fair weather spouse"! Mine has been with me for 44 years and 28 of those were during treatments, doctors visits, follow ups, etc. Always something to do with me, never about her, I love her and appreciate her dearly for being with me through it. But when I say something about it to her, she always just asks, "what was I supposed to do"? That's how everyone should think, but sadly they don't.
I thank you for staying tough with your's too, as a patient, I can say for all patients we thank our caregivers!
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Gumpus61
about 4 years agoThe amazing thing is.......after 33 years and all the trials and tribulations we feel more complete and in love than ever, every thing we do is as good or better than when we first married. For the first time in years I simply don't have much of anything to worry about.....that takes some getting used to !
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Gumpus61 posted an update
So........Hair is back and very full,,,,,certainly not growing as fast as we would like. It's a bit humorous as some folks recognize that were in recovery and others comment on her lovely "short summer cut". So here is to just enough hair that nobody can tell the difference !
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Gumpus61 posted an update
So for some of us.....what's next will be our passing. Perhaps hearing of My Mother's passing will be a cautionary tale. Mom was diagnosed with Terminal lung cancer at age 72 and given a year to live. Of 7 children I was the one she called. We agreed that day I would help her as the dignity Police, the one she would reach to when it was time to quit fighting. Treatment ensued and the slow decline began, the big fall happened and the slide got faster. Ultimately she called me from the Hospital and said she just couldn't take any more. Picking her up at the hospital I looked at her hands and new....the time was coming. I insisted we call Hospice and the "Angel" came to our home, the interview pretty much demonstrated Dad and My sister were still swimming in the Egyptian River (De-nile). Sis said things like she was watching her Cholesterol ! Sooner than later was the word and I took the watch that night. Mom started hitting the check list of behaviors and asked for her Grace about 1:30 Am.....I called Hospice and Mom got the relief she needed.....I will never forget the last look from her.....of Thanks. Sometimes a person you really trust will accept the job of Dignity police. Just something to think about.
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Gumpus61 posted an update
As a care giver I completely underestimated how the potential loss of my wifes career impacted her emotionally. I remember someone once telling me, "If your work is who you are and it isn't, your Not". The blows to her self image and worth were much worse from that aspect than the Cancer battle itself. The news of our Remission was rather quiet compared to her response at learning she may be able to continue her career. Another chore for caregivers......keep this one in mind and always be a positive part of your patients self image and ability to hope.
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nferro9925
over 4 years agoMy sister had to stop work completely after a while = she has Alzheimer's - and the decision was so hard on her and devastating. We worked all of our lives and always had.
For someone to suddenly not being able to work ( and they want to) is very emotionally damaging to their self worth.I am glad that she may be able to continue again. That would be a wonderful gift!
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Gumpus61 posted an update
Well, relief from announcement of remission in our PPC lllC was short lived.........Swollen kidneys and tests for cause are now on the Agenda.....UGH !
