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What an insidious disease


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#1 CallMeLucky

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Posted 01 January 2012 - 10:15 PM

Cancer is truly relentless.  On Christmas morning my dear father in law, who turned 70 the day before, collapsed with a seizure.  He was taken to the hospital and we found out he has a stage 4 glioblastoma and will not likely survive to see 2013.  It just doesn't make sense.  This was a guy who did everything right.  He ate right, exercised, hiked, ice skated, lived by himself in the mountains.  When it snowed he shoveled his entire property by himself.  We noticed over the past month or so he was starting to act weird but we weren't sure if he was just getting older.  We knew something was wrong on Christmas eve and we were starting to put together a plan to take him to the doctor - in general he only went to the doctor once a year for a physical and he didn't take any medication for anything. 

He already had the surgery to remove as much as they could and we are hoping he will be coming around soon to his former self so he can participate in the treatment decisions.  Stress is at an all time high for all of us.  My poor wife, she lost her mother to colon cancer when she was in her 20's, her mother was only 44.  I was diagnosed with leukemia a year and a half ago, and now her father has a brain tumor.  She doesn't deserve this at all ( I guess no one does, but she sure as hell doesn't)

Two days ago was so bazaar as everyone needed to sleep and I was the only one available to sit with him at the hospital.  Despite being exhausted from fighting off a nasty cold and having to care of my children while my wife has been out for days at a time, I felt I needed to do it.  There is a cruel irony to a cancer patient having to take care of another cancer patient who is worse off.  The emotions are so complicated, feeling sad about what is happening to him, scared it could me at some point, guilty about why it's not me - why does my cancer have a good prognosis but his has such a bad one?  Normally I would have joked with him about it and we would have laughed about the irony, but he just isn't himself, don't know if he ever will be again.  At this point he doesn't even know it is cancer, he's not ready to comprehend it (according to his surgeon) so we let him go with his version of the story, which is that he fell and hit his head and the fall developed a tumor that they had to remove.  It's going to suck when they have to tell him the full story. 

So in closing, it's been a tough couple of years and this year coming up isn't looking any better.  Just so tired, so so tired of it all.

Thanks for listening to me vent......


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#2 hannibellemo

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Posted 01 January 2012 - 10:26 PM

Lucky,

My thoughts are with you and your family as you face this new challenge with your father-in-law.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 Marnie

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Posted 01 January 2012 - 10:31 PM

Hey, Lucky. . .sorry to hear your news.  One of our close kayaking friends (in her late 40s) was also diagnosed with a stage 4 glioblastoma.  She has done very well. . .hanging on for over 6 months now, with a very good quality of life. . .still did some river rafting this summer, though no kayaking. . .the risk of flipping and hitting her head was too great for that.  She is undergoing some experimental treatments and tolerating it well.  The prognosis is not good, as you know, but things are looking a lot better for her now, than at her initial diagnosis. 

When your father-in-law is able to comprehend more and learns from his doctors about his diagnosis, please let him know that he can have a good quality of life. . .I've seen it in my friend, Kim.  She has a wicked ugly scar on her head, and only a bit of hair, though it's coming back in now, but she is still living life to the fullest.   The hardest part for her was her loss of independence.  After her siezure she wasn't allowed to be left alone or to drive until they could see how the anti-seizure meds would affect her.  She is now back to work . . .she is a veteranarian who built her own practice . . .and she is back to doing everything, except she won't allow herself to do surgeries on her patients any more.  There is hope for your father-in-law, though he has a tough road and the prognosis is not good. 

All the best to your family.  I do know that Kim found a lot of comfort in talking with me, as she felt that I had some notion of what she was experiencing.  You will be a great comfort to your father-in-law. 

And, just something to think about. . . .yesterday we lost a canoe acquaintance.  He was in his car driving with his wife, when the hurricane winds we've been having for 4 days in Denver, threw a downed tree limb through his windshield and impaled him.  He died on the way to the hospital, after being able to pull his car over to the side of the road so that his wife would be uninjured.  It doesn't take cancer to change your life in an instant.  Life is fragile.  We all need to enjoy and appreciate what we have for as long as we have it.

Marnie



#4 ChrisC

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Posted 01 January 2012 - 10:57 PM

Wow. Wow. Ow.

So sorry for all of you that this is happening. May you each, and all together, find the strength to see your way through this.

It is indeed a huge challenge at any time, yet perhaps more so at "holiday" time when we wish for such good things for our world family.

What can you do, other than show up for each other, take time for yourself, own the love you share, and share that love. Nourish each other, and grow in life and love.

Wow.

As Sloater always says, "What is, is."

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#5 Judy2

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Posted 01 January 2012 - 11:57 PM

Hi CallMeLucky. I am so sorry about all you are going through. The thing about life is it's so fragile and so very very tough sometimes. I pray you have the strength to get through all that you will be going through in the next months. Please take care of yourself, I believe that stress plays an important part in our health, you need all your strength to deal with your CML. My mom passed 4 years ago, 10 months later my step-father developed lymphoma, he died in Feb. one week later I went into renal failure, two weeks after that was dx with Wegeners and three months after that was dx with CML. I truly believe all the stress I went through weakened my immune system and played a part in my health issues. As for the guilt, I know what you mean, my biological father died when he was 58. I always thought to myself would it be fair if I  lived longer than 58 years, now I'm not sure I will, I'm 53. Anyway, life is different for all of us, some people are healthy into their 80s, others die young. We have no control over most things in life- how does the expression go ?- We make plans and G-d laughs, something like that. I hope your beloved father- in- law surprises you and starts to improve, that he has some happy times left. Glad you vented, CallMeLucky, you are always there for everyone, hope we can be there for you.

Judy



#6 Skittles

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Posted 02 January 2012 - 09:49 AM

Lucky, I am so sorry to hear of what is happening in your family.  I hope you and your wife find the inner peace and strength it is going to take to get through yet another hurdle in life.  My heart just breaks for your dear father-in-law.  The news is going to hit hard when and if he is ever told.  Like you, I sometimes have so many mixed feelings about the situation we are in and though I am very grateful for our treatments and the research going on in CML I  feel guilty when it comes to others in a worst situation and wish they too had the treatments and medical advances we have.  Stay strong and be there for each other.  You are a very kind person and have shared with so many of us so it's time to let us help keep you strong.  Please continue to vent and let us know how things are going.  Thinking of you, Skittles



#7 valiantchong

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Posted 02 January 2012 - 11:01 AM

Well, there is lots of things happening in this world beyond human control or comprehension,.. as the goin gets tough, we need to take it easy and just hope for the best outcome....

My thoughts are with you, hoping you and your father inlaw could go thru this and gets well....



#8 pammartin

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Posted 02 January 2012 - 01:47 PM

Lucky,

I have no words to offer except I am sorry for those events that change life as we know it forever is some way.  I can relate to your thoughts on a cancer patient and another cancer patient.  I attended a service yesterday for a woman who passed away from lung cancer, her sister is a dear friend of mine.  I am still working through every one of those feelings and thoughts you expressed 24 hours after the service.  I wish you and your family peace.

Pam



#9 pamsouth

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Posted 02 January 2012 - 06:14 PM

Lucky,  So........... sorry the terrible news and you going thru this with your own cancer.  Stress not good for you, please try to take care of yourself and put the rest in God's hands.  It won't do you or him any good if you go down, too.

I was struck by your statement;

>>There is a cruel irony to a cancer patient having to take care of another cancer patient who is worse off. <<

That is my exact thinking, as I have a friend a couple years older then me, with bad breast cancer, that has spread.  Several chemo session,  then her masectomy took 8 hours instead of 4 hours. Now radiation.

She is a retired nurse.  She use to comfort me when I was dx with CML in 2005, and now she has cancer much worst then my CML.  It almost make me thankful for CMl then what she has.

Praying for you and your family

PamSouth


PamSouth


#10 CallMeLucky

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Posted 02 January 2012 - 06:43 PM

Thanks for the kind comments.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#11 AliceJane

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Posted 02 January 2012 - 07:11 PM

Lucky,

sorry I am so slow in posting. I have been sending you my thoughts and prayers.  I don't know what to say, it is not fair on many levels. And only thing I know to do is just keep putting one foot in front of other and pray.

I wish I could help more.



#12 Susan61

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Posted 02 January 2012 - 07:28 PM

Hi Lucky:  I just read your post, and I just want to add to what everyone else has said.  We never know what each day brings.  I go to bed at night thanking God for the Day, and I awake Thanking him for the new day ahead.

My heart goes out to you and your wife especially.  This has to be so hard on her.  These things always happen during the holidays.  I will keep all of you in my prayers, and just try to give your father-in-law the best quality of life that you can.  We are not promised a tomorrow no matter what our health is like.  Your wife really needs all the support you can give her right now, and that matters more than anything.

Susan






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