my ramble on "chronic disease"
kayandok
Member Posts: 1,202 Member
Hi everyone, I was dx June of 07 and am coming up this June on being a three year survivor of OvCA 3C. I did have a glorious 8 month NED but now am in the stage they have coined, "treating as a chronic disease". I'm on third line chemo, doxil coming up on 5th cycle. CA125 is holding now for three months at 132.
Now if you have heart trouble or arthritis that means taking some kind of meds to keep things at bay or to treat the pain. For cancer, that means pumping your body full of toxins and dealing with a lot of side effects, never really knowing if that chemo is going to work or not, and when it does work, not knowing how long it will work before having to move onto the next chemo. It can also mean taking a lot of other meds for pain, constipation, nausea etc.
There are many of you ladies who have been this "chronic disease" place for awhile and seem to have accepted it as the way life will be. I so admire you strength, stamina and attitude!! !I am in this stage, cancer doesn't seem to be going away, and whether I like it or not, will be on chemo "for the rest of my life" for however long that is. Now I want to not be one of those glass-is-half-empty kind of gals but in all honesty, am struggling to be the glass-is-half-full, I am so blessed to even be alive!, full of hope cancer survivor. I have been processing (AGAIN!!) to try and figure out how I can be full of stamina, energy and have this seemingly positive outlook that many of you have!!!
I haven't come up with any revelational ideas other than I need some more terminology for being able to embrace this new (well not so new) stage I am in. I'm sorry, but I just don't like "treating as a chronic disease"!! And although words are only that, just words!!, for me it gives me definition which helps me to set goals, and be motivated or passionate. Not to mention, that I have always hated labels or anything that sounds like I am being put into a box.
What triggered all my processing was my recent trip to the US in early December to see one of the "go to" docs in Seattle. His name is Dr. Drecsher and his resume etc etc is one of the best, not to mention that he is voted in the top 10 every year for the Seattle area. He confirmed that my current protocol and dosage. Then, he gave me his line, "now you we have to treat this as a chronic disease blah blah you have had too much surgery blah blah". Now if it had ended there, I would have just wanted to walk out and start planning my funeral. But, he did go on to give me hope. Now here is where the difference is, I think. Probably every doc in the world would look at my file and realize I am now "palliative" but whether or not they choose to give me hope or not divides them into two groups with a huge gap in between!!! This lovely man told me about a patient he had that went into remission 10 years ago after 5th line chemo and a couple of other similar stories!! These patients are obviously unusual, but he took the time to share these stories, to give me hope. I felt like he was saying, "We can do all we can do, but ultimately, God decides who lives or dies!" He may not even believe in God, who knows, but he was certainly was acknowledging there were forces at work beyond his control.
So, back to my terminology, I guess I want to still be a "cancer survivor" and I want to always have hope I can go into remission and dance with NED. As silly, unrealistic and almost head-in-the-sand as I'm sure it sounds given my situation, I just don't want to think of myself as "treating a chronic disease". This ramble is helping get into the glass-is-half-full category I think, so for those of you that have been kind enough to read this thank you for letting me process!!!
kathleen
Now if you have heart trouble or arthritis that means taking some kind of meds to keep things at bay or to treat the pain. For cancer, that means pumping your body full of toxins and dealing with a lot of side effects, never really knowing if that chemo is going to work or not, and when it does work, not knowing how long it will work before having to move onto the next chemo. It can also mean taking a lot of other meds for pain, constipation, nausea etc.
There are many of you ladies who have been this "chronic disease" place for awhile and seem to have accepted it as the way life will be. I so admire you strength, stamina and attitude!! !I am in this stage, cancer doesn't seem to be going away, and whether I like it or not, will be on chemo "for the rest of my life" for however long that is. Now I want to not be one of those glass-is-half-empty kind of gals but in all honesty, am struggling to be the glass-is-half-full, I am so blessed to even be alive!, full of hope cancer survivor. I have been processing (AGAIN!!) to try and figure out how I can be full of stamina, energy and have this seemingly positive outlook that many of you have!!!
I haven't come up with any revelational ideas other than I need some more terminology for being able to embrace this new (well not so new) stage I am in. I'm sorry, but I just don't like "treating as a chronic disease"!! And although words are only that, just words!!, for me it gives me definition which helps me to set goals, and be motivated or passionate. Not to mention, that I have always hated labels or anything that sounds like I am being put into a box.
What triggered all my processing was my recent trip to the US in early December to see one of the "go to" docs in Seattle. His name is Dr. Drecsher and his resume etc etc is one of the best, not to mention that he is voted in the top 10 every year for the Seattle area. He confirmed that my current protocol and dosage. Then, he gave me his line, "now you we have to treat this as a chronic disease blah blah you have had too much surgery blah blah". Now if it had ended there, I would have just wanted to walk out and start planning my funeral. But, he did go on to give me hope. Now here is where the difference is, I think. Probably every doc in the world would look at my file and realize I am now "palliative" but whether or not they choose to give me hope or not divides them into two groups with a huge gap in between!!! This lovely man told me about a patient he had that went into remission 10 years ago after 5th line chemo and a couple of other similar stories!! These patients are obviously unusual, but he took the time to share these stories, to give me hope. I felt like he was saying, "We can do all we can do, but ultimately, God decides who lives or dies!" He may not even believe in God, who knows, but he was certainly was acknowledging there were forces at work beyond his control.
So, back to my terminology, I guess I want to still be a "cancer survivor" and I want to always have hope I can go into remission and dance with NED. As silly, unrealistic and almost head-in-the-sand as I'm sure it sounds given my situation, I just don't want to think of myself as "treating a chronic disease". This ramble is helping get into the glass-is-half-full category I think, so for those of you that have been kind enough to read this thank you for letting me process!!!
kathleen
0
Comments
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My glass is half-full, too.....
It's at least half-full, maybe more. And I don't care what anyone says....I will never, ever, EVER give in to this disease.
I'm with you, Kay. Until I draw my last breath, by God, I'm a Cancer survivor, not a patient being treated for a chronic disease, not a victim, and certainly not a statistic.
When my mother-in-law died in November, people were shocked that I traveled from Texas to West Virginia for her funeral. Why? Because I have Cancer.....because I was in the middle of chemo therapy. So I must be dying, right? WRONG.
Not only did I go, I bought new clothes. I bought skinny jeans and cute boots and a sweater with bling. I told my husband that I wanted people to whisper to one another, "She looks better than me and I'm not even sick."
Your doctor in Seattle is spot-on....only God gets to decide who lives and who dies on any given day. I know two people who were on palliative care and not expected to live more than a few months, both of whom are now enjoying NED. True, I have said goodbye to many more who succumbed to various Cancers, but that isn't the point.
Every single person on the face of the planet is terminal. That's my take on the whole "chronic illness" thing. Life is a chronic illness, and sooner or later, we will all die. But I will not die for lack of hope. Hope, my dear friends, dies last.0 -
We seem to be in the same place, kkayandok said:just re-read
my post and found a bunch of typos I couldn't "edit" anymore.
What is the time limit on that I wonder..... Oh well, you get the gist anyway:)
k
I have UPSC, a rare aggressive recurrant type of uterine cancer that is treated like ovarian cancer with similar chemo regimes. After my initial diagnosis (Stage 3c), my oncologist wanted to "go for the cure" while I was still physically strong. Initially I did 9 months of surgery and adjuvant chemo and radiation, pounding any stray cancer cells with almost more than my body could take, fighting for the only chance I was told I had to beat this thing, because if it came back, then we'd start talking 'controlling my condition' and stop talking 'cure'. But all that first year, we shot for that elusive long-shot 'cure'. And I clung to that slim hope and allowed myself to nurture it and believe in it throughout my 5 months of remission.
Right now I am 5 rounds of chemo into treating my 1st recurrance. 'Cure' is no longer a word my oncologist uses. And I ask myself, would there have been an advantage in mentally preparing myself for the devastating news of 'recurrance'? Would I trade the happiness and joy of believing I was cured during those 5 months of blissful remission, for the preparedness of NOT believing I was cured and NOT allowing myself that happiness, just so I wouldn't get my world rocked so hard again??
And I can tell you for sure, that for me, it is better to be optimistic and to have hope (I STILL have hope!) than to be 'prepared' for each new piece of bad news as it unfolds. I would rather get my heart broken over and over and over than to harden my heart against each fresh disappointment. BELIEVE! HOPE!0 -
Hugs kathleen
Dearest Kathleen,
Isnt' this board a blessing? One can put down how we are feeling and not just get understanding but support, encouragement and so much com~passion(two words there).
I understand the chronic, but to me the drugs they give people for chronic disease makes them better not sicker, now remember I just had a treatment so coming from a sick place. LOL I met a women who after 10 years of on and off chemo for ovarian cancer has been in remission now for twelve. These stories are far and few between but they are there, as you know we never know what God has in store for us, what miracle lay waiting for us. Some, sad to say, is to make it only 3-5 and others like myself to continue to beat the odds and live beyond the 5years. Each year we make it there are new discoveries, I am praying this year it is for a more tolerable treatments than chemo. My girlfriend called Tuesday adn I told her it is so unfair that a person has to be sent to such a sick place to give them more time here on earth. I think that is the difference in chronic disease and cancer, we put the body through so much to remain here with our loved ones. It's not like taking insulin and you feel better ~ it's an ongoing war not only on the cancer but on the whole body. I know I make that choice and believe me somedays it is a hard choice. Others who love me say it's worth it ~ wanting more memories with me and of course I with them.
WHEW ~ didnt' mean to write so much.. I guess just coming from the beds of chemo I had a lot to process too. ☺ Thanks again for sharing, may your life with cancer be a long life, long enough to one day hear.. we have found a cure or Kathleen we see no more cancer.
God Bless You My Friend0 -
Chronic disease
Hi Everyone
Hurrah for all of us. I agree with all of you. When I was DX and after my surgery, The Cancer had advanced so much that the Dr never mentioned cure or remission. Well here I am 3 yrs 5 months later and I am feeling good. Yes I have had remissions 5-6 mo, but have had alot of chemo also. This Cancer will not get me down and when I do have a break I go and do as much as I can. God Bless you all.
HUDS!!!!Dinora0 -
90+
Kathleen,
My doctor said she has documented miracles of her patients and others. With God anything is possible. She had a patient who is still here at 90 years plus after being diagnosed with OVAC stage 4 at an younger age. She left to go to Israel to do missionary work! No more evidence of cancer for past several years.
Once diagnosed with Cancer God can miraculously heal us, He can go through the circumstance with us (no matter how long), or He can take us home. He is going through this journey WITH ME right now - how awesome it that?! AND if He choses to heal me of this cancer - how awesome is that? If He chose to take me home - how awesome it that?
For me it is a win win situation!! How awesome it that??? He is by my side no matter what! Even through the yukky chemo, the yukky shots (some two a day), the sometimes I am so tired of being achy and cranky! ☺
Love,
Libby ♥0 -
Well SaidLPack said:90+
Kathleen,
My doctor said she has documented miracles of her patients and others. With God anything is possible. She had a patient who is still here at 90 years plus after being diagnosed with OVAC stage 4 at an younger age. She left to go to Israel to do missionary work! No more evidence of cancer for past several years.
Once diagnosed with Cancer God can miraculously heal us, He can go through the circumstance with us (no matter how long), or He can take us home. He is going through this journey WITH ME right now - how awesome it that?! AND if He choses to heal me of this cancer - how awesome is that? If He chose to take me home - how awesome it that?
For me it is a win win situation!! How awesome it that??? He is by my side no matter what! Even through the yukky chemo, the yukky shots (some two a day), the sometimes I am so tired of being achy and cranky! ☺
Love,
Libby ♥
Libby .. amen amen amen :-) Hugs Bonnie0 -
Me too!!LPack said:90+
Kathleen,
My doctor said she has documented miracles of her patients and others. With God anything is possible. She had a patient who is still here at 90 years plus after being diagnosed with OVAC stage 4 at an younger age. She left to go to Israel to do missionary work! No more evidence of cancer for past several years.
Once diagnosed with Cancer God can miraculously heal us, He can go through the circumstance with us (no matter how long), or He can take us home. He is going through this journey WITH ME right now - how awesome it that?! AND if He choses to heal me of this cancer - how awesome is that? If He chose to take me home - how awesome it that?
For me it is a win win situation!! How awesome it that??? He is by my side no matter what! Even through the yukky chemo, the yukky shots (some two a day), the sometimes I am so tired of being achy and cranky! ☺
Love,
Libby ♥
I feel like Libby. I am so secure in the love of God and knowing that HE is always with me and has plans for me that I do not understand as of yet. Of all the effects of the disease and the chemo, it is still not up to the sacrifice that Christ gave for me so I am soooo....in debt. Saundra0
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