34 replies to this topic

[AliceJane]

Judy wrote;

it is a chronic cancer with its own set of challenges, it is not -you have CML, you take this pill and you will be fine. Only saying..... 

Thank you Judy,

that is what gives me the most trouble now, when I was in hospital first Dx'd, Onc came in made pronoucement,

"come see me in month, I will give you pills, you will live normal life" my daughter heard that and that is all she heard, now family looks at me like, "what is wrong with you, you must be doing something wrong"

little compassion, when I was sickest I could go for 2 weeks in this apt alone, phone never rang once.

that attitude has caused me no end of problems and heart break.

[CMLSurvivor]

Judy,

I agree with you 100%!! Well said.

[Ted]

Thank you Judy,

Survival rate and life span are one thing but a normal life is something totally different. I am waiting to have surgery to remove a tumor on my appendix. The surgeon said we won't know if it's cancer or not until it is out. A person with a normal life would be having that surgery ASAP. I have to wait until I have enough good white blood cells to combat infection, how long that will be I really don't know. If I didn't have CML I would have already had the surgery but then again we don't have a normal life anymore.

[Judy2]

Thanks AliceJane and CML Survivor for responding. AliceJane, I think it is very important to find the right onc. I just switched oncs and it was the best thing I ever did. The first thing my new onc. wanted to know was what I was doing with my days. I told him not much, he asked if I was seeing a therapist, I said I wasn't and he said he was setting me up with a social worker. Two days later the social worker called me and one week after I saw my new onc. I  had my appointment with her. I feel like such a burden has been lifted off me,  my new onc. acknowledged, just by asking the question of what I was doing with my days that this is an  illness that has to be dealt with on many levels, the whole person has to be helped. My new oncs office (the cancer center I'm now at) is also helping me navigate through the maze of getting my meds, actually they have just about taken over the whole process, and again I didn't even ask them to. As a matter of fact I asked them what I should do, they said nothing, they would take care of it. All this has made such a difference in my mental health. I guess I'm saying it's important to have an onc. who treats and acknowledges both the physical and emotional toll that this disease takes. After all there is more to us than leukemic cells and I do believe in the mind body connection.

Judy

[Judy2]

Hi Ted. You are absolutely right, another example of how CML has affected us. Things are not the way they were, we have chronic cancer, cancer for the rest of our lives. I'm not sure if CML is the first chronic cancer, if it's the only cancer that can be treated, has to be treated forever, but not eradicated. If so us CMLers are a breed unto ourselves, we are in uncharted territory here. We are learning to live with a cancer and it can be a scary process.

Please keep us posted on the tumor on your appendix. I am praying for you, hopefully it is a benign condition and you will come through your surgery with flying colors (when it rains it pours or in your case it is a deluge)

Judy

[pamsouth]

Alice Jane

Yea I am right their beside you sister. Got a daughter who worked 10 or 12 years as an RN new born ICU newborn at a leading children hospital.  When she started out she was so full of compassion, she would be assigned a baby, and if the baby had a bad day or she didn't think the baby was going to make it she would come home and cry.  Or perhaps she would take care of one that had surgery was only going to live a few years.  Also her husband is a doctor.

She stopped working with the birth of her 3rd child who is now 14.

I thought she was my best friend.  But when diagnosed in 2005 and I took her with me to a couple of doctor appointment.  To make a long story short, she became my worst night mare.  Mad, Mad, Mad, sarcasm, arrogant, pride, Ms  know it all, no compassion.  Mad because she had referred me to one of their doctor friends who is was getting ready to do a trial of 400mg vs 800 mg.  I went and listen to the 2 hour lecture.  Read thru tons of paper.  Decided NO, Yep she Mad.  Take her to Doctor and asked about having sibling check for a match and about transplant, Yep she's furious, pacing up and down the floor waving her arms in the arms.  Doc puts his hand over his mouth and turns to me and says, they don't want to deal with me.  Doc walks out of room, all are embarrassed except for her.  Doc comes back in and says you all needs counseling she is happy, YES.  Knowing I would be no match for her wit. She found out thru the grape vine I flew to MD Anderson for more test.  She baited me then scold me with the furry and wrath of h... More then mad.  Then later she is angry as I won't discuss CMl with her.  So her answer to that is You are UP & Down, Up & down, etc,.  She now has refused to called me mom,  Called me PAM.  I cried and cried.  What was her response, you Pam are making poor choice, you Pam are not a doctor, You Pam need to listen.  I, Sherry the Nurse, husband the doctor are PRO and have a right to are opinion.

Needless to say there went my 3 beautiful grandchildren and I lost my daughter, that was over 6 years ago and It not change.  I think I was more sick over losing the relationship then the CML I don't know which was worst.  Oh, I forgot her thoughts, what are you worried about you are lucky great med's, you just got to many of a good thing.  You are lucky they will find a cure and all will be normal.  I can not believe my ears.  When did she lose her sense of compassion, my guess is when they became in the upscale rich lane with rich friends, and became superior beings!

Yes Alice Jane,  I am sure there are many heart break stories out there.  I have a new family of support group and new outlets.  Sad to say my daughter would be the last person I would want advice from or to cry on her shoulder.  I don't go to the hospital where her husband practice medicine, and I try not to go to doctors that he knows or is connected to.  He can look up all my reports.  When we brought mom down here from her home about 100 miles and took care of her for about 3 years before she passed away, well my daughter husband use to look up her reports, he has access and channels and colleagues.  So I try to keep my distance.

PamSouth

[pamsouth]

Ted I hear you loud and clear about the surgery and complication with the CML and all.

So far I am lucky in that I don't have to face that, but that could always change, then I would have new challenges to face.

Not exactly a piece of cake.  I can remember being furious when diagnosed and these oncologist actling like every thing a piece of cake, I could write a book on that.  I read some of my reports, the write down their version, not mine.  That is what gets reported their version.

Sometimes I am embarrassed in that I know other who have worse cancers.  Be cancer drugs can also cause other cancer and who knows long term.  Feel like a guinea pig.  Then I met other people who have their cancer cut out and they are done. 

So what makes CMl a piece of cake.

When my previous onc recently wanted me to change from Gleevec to a newer drug, she says piece of cake.  All I could think of was that woman is CRAZY!!!  She is a stand alone doctor who has to many patients, I was probably the only CML patients she has.  I don't know how she could up with all those patients let alone CMl, Try waiting 2 hours to get into see her.  I think she mostly has breast cancer patients.  It was time to move on to new onc anyhow.

I don't consider myself lucky to have CML, and don't consider my life normal!  What kind of life is one filled with cancer. Trying to keep up and educate about all the drugs.

I certainly do not think CMl is a simple cancer.  The PH+  is only at the bottom of the chain.

The ancient mother cell is at the top of link, and apparently very smart as to hide herself and come out now and them to reproduce and go back to hiding.  Who knows how long she lives.  The leukemia cell before it even becomes PH+ play with are red cells and platelets.  I never had high white cell it was 2million platelets.  So the leukemia cells are in everything. 

Who know what they, science doesn't even know, or isn't telling in lay man's term.

Life time drugs for 2012 what $100,000.00 year, approx.

Venting!!

I suppose all this should give me a passion to go into holistic medicine and help educate are young people to find cure!!  Yea that is another thing lets don't make BMT safer, we wouldn't want to do that because that is the only know cure!!!  And yes I know a few who had a transplant and are doing well.  Yea it is dangerous but all the research money is going into more drugs not cures and finding safer transplant for CML.  And is all the money going into research or into the purses of the wealthy.

I don't care what anyone says, Greed rules!!

I probably will have to go back and delete this!

PamSouth

[AliceJane]

PamSouth,

yes, I have read your post about this. It is heart breaking. I have beendown that road, mine started after my DH died and all thought I was stuck and grieving myself to death. My DD was so mad she began to keep grands away from me, my GP wanted to have me committed after 2 yrs of getting sicker, weight loss. hair falling out, etc. I finally threw temper fit in DR. office, said okay, I will go to mental hospital but first you do a damn physical and run tests, I know I have some kind of cancer. They humored me, but when PA was doing exam on my stomach and found what I thought was tumor.,  I saw her face change, It was enlarged spleen. They did blood test, called me next morning and said get to hospital.  And thus my CML journey began........

Do you think anyone has said " I'm sorry, you were right, you were sick?"  Nope, next time I saw GP they were patting themselves on the back for finding my CML. but said we will not be seeing you anymore Onc can take over!  I call BS on that! nothing from my DD. we have friendly but distant relationship, but not same as it was before.  I don't trust her. There is more stuff, but just don't want to go over all that again. It hurts too much and I have to let it go. I do get to see my grands, but it is not same. I fear it never will be again. being turned on by a child is the worst most awful, painfull  thing I ever lived through in my life, including the CML.

But, you know. hugs,

alice

[pamsouth]

Alice,  I soooooooooo appreciate you sharing.  Isn't it interesting when they, family, doctors, use the word mental, to their advantage.  When maybe a little compassion and someone to vent to would go a long way!!

Isn't it a shame, here you are fighting for you life your sanity.   They don't have the moral dignity to say I made a mistake, that must have been horrible.  The could have said something like; please forgive me, I am human I made a big mistake,  I love and care about you.  Something, anything, just to validate the terrible, horrible scary ordeal!!  When you actually had cancer, and they wanted to put you away!

I believe their is a God in Heaven who hears all of these things and I believe there will be a judgement day for those who have evil vindictive. hearts.  You know even the bible says PRIDE goes before a destruction. 

It is hard to think of these thing, it is sad.  I use to keep it to myself, to sick to fight, to many battle, to much stress, fighting with bills, insurance, family.  Just took care of my mom 3 years and then put my 13 year old dog down and then to deal with all this an a smart mouth arrogant .....

 

But I got a mouth now and I don't mind using it with a bit of common sense.

Sometimes I use to think oh just shut up it will only get worse.  But then I see thru different eyes now.

Took me a long time to get here.  But hey there are a lot in the some boat.

Praying for all of us.

PamSouth

[Judy2]

To any of your friends or family who don't have CML and who say to you what is the fuss about, there is medicine you can take  I would ask  them "So how do you deal with your chronic cancer"? See what they have to say then.

Judy

[Ted]

I agree 100% Judy

Ted

[Judy2]

Ted. Please keep us posted on the tumor on your appendix. I know this is doubly stressful for you as you not only have to deal with the possibility of having another difficult dx but now you also have to wait to get the situation resolved. Remember, we are all here and rooting for you,

Judy

[pamsouth]

LOVE IT JUDY2,

YOU ARE A WITTY ONE, EVEN WHEN YOUR DOWN!!

PAMSOUTH

[pamsouth]

TED, me thinking of you too,  PamSouth

[Ted]

Thank you Judy, PamS,

I only wish I could  provide as much support to you as you are doing for me. I'm just too new at this to really be of much help to anyone, I have to figure out what a lot of these tests are for and what the numbers mean. I'm thankful that there people like you to provide help to someone new to this cancer, someone who is still trying to figure out what comes next and how to deal with it.

Ted