What a day…

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• December 6, 2005 at 3:11 am #10485
  karenkay

  Member

  Long story short, my dad’s doc called when he found out I cancelled dad’s appt. today (via the appt. gal told him when I called and cancelled) and I made another one for Thurs.
  He basically told me that if he verified the lab results from the other lab (17% blasts) that my dad had progressed into leukemia and was going to die. There is no treatment for him, period (other than BMT, which he can’t handle).
  He was upset with me because he said he was getting a lot of my complaints (via the staff) and he didn’t understand what my problem was.
  I just said, you don’t think I am entitled to be upset when your nurse calls me one week ago with a death sentence on my voice mail and then upon talking to her she says you will review and call in the morning and I don’t even hear from you all week?
  He said, you have a good case there and I am sorry. But you should have called and insisted to speak to me.
  I just said, sorry, I was a little busy helping my dad with a UTI!!
  I said, I didn’t get feedback about when to call or not call, he is too busy for us, and I am exhausted and lost.
  He told me to make the appointment.
  I am not cancelling my appt. with the new doctor on the 14th.
  I have a few questions:
  He said the smear was efficient in making his diagnoses of leukemia, but we could do another BMB if I wanted. Didn’t someone here say a smear didn’t tell the whole picture?
  He said an infection would not affect the blast count at all? Is that accurate? I thought the infection could mess with those numbers.
  Is 17% really really bad?
  He said he could tell me now or later but the bottom line is if he verifies the last blood test that my dad is going to die. What does that mean? Next week, Next month?
  He said there is no treatment for MDS when it has progressed to leukemia except a BMT which my father can’t have. Wow, really, nothing??
  I don’t know, he has not had a lot in the way of compassion for us, but I guess that is not his job.
  I figure I am going to switch docs because if there is nothing they can do for us, why not try for a doc who acts like he cares. I couldn’t believe that doc called me today upset with ME. Oh well.
  Karenk
  ps, I ordered Essiac tea today and will start dad on it when it comes in. At the present time, my dad feels strong, is eating like a horse, and feeling pretty good.

  December 6, 2005 at 4:20 am #10486
  patti

  Member

  Karen,

  I wouldn’t even bother going back to this guy. What a jerk. You know what? When my MIL was diagnosed with MDS they said she had greater than 30% blasts in her marrow. Granted, there is a lot of discussion between different doctors about if that constitutes leukemia or not but I think you’d be hard pressed to say 17% is leukemia. Also, my understanding is that you really need a BMB to get a definate leukemia diagnosis. There are treatments for AML. Maybe more then for MDS. The treatments are all chemo (just like MDS) but from what I’ve read they have a pretty good success (age is definately a factor). I honestly wouldn’t go back to this guy if I were you. If he tells your dad he’s got a death sentence it could take away all hope your dad has. And you know what, taking away someone’s hope is as good as a death sentence in itself. I’m gonna step out on a limb in this case and say that I bet you a million bucks (or at least what’s in our IRA!) that this guy is a euthanasia believer. People like that are real easy to let older people die because they think it’s a drain on society and they are not “productive.” I’d love to ask the guy myself, but I’ll bet you if you did some research or outright asked he’s all for it.

  Karen, don’t give up on your dad and really think about whether it’s worth going back to him. We were so thankful we got a second opinion. I think you will be too. If Zuckerman calls I would just tell him you’re getting a second opinion because you don’t like his attitude. Maybe he’ll change, maybe he won’t, but at least he’ll know the truth. And sometimes the truth hurts. I can’t vouch for this new doctor because I don’t know him personally but I’m hoping my “adopted” mom wouldn’t accept a jerk for her dad and that’s where the recommendation came from.

  Deep breath. The 14th is next week. The wait might be better than the alternative.

  Take care,

  Patti

  December 6, 2005 at 5:14 am #10487
  Jimbob

  Member

  Karen,
  I agree with Patti. too often people accept doctors as God and what they say becomes a self-fulfilling prophecy. If they say there is no hope, then people give up. If they are told they have 2 months left, they die close to it. Yet if others are able to convice them that there is a reason for a lot of hope and mst people with the same conditon live several more years then they go for it.
  I would go for the second doctor who is willing to look deeper into things and seems to have a better sense of patient care. He may offer some hope or he too may suggest compassionate care but you won’t know until he gets a chance.
  Prayers for you and your dad.
  Jim

  December 6, 2005 at 5:44 am #10488
  chewgie

  Member

  Karen,
  I so glad you dad is feeling better. The only advice I have for you is to do the best you can to love your daddy and tell hime so now. I didn’t expect to lose my daddy so suddenly, but Iam glad I made sure he knew I loved him. Even til his last breath. So love him now, and take care of yourself. Wish I had better words of wisdom.
  Robin

  Daddy died Nov. 14, 2005 sudden stroke from brain tumors the sorry doctors never knew he had til it was too late

  December 6, 2005 at 6:44 am #10489
  CarolineG

  Member

  Karen,

  I agree with everyone. See the new Doctor for a fresh face and a new attitude. You need it right now. Dr. Z seems to already have decided what the diagnosis and the prognosis is for your Dad. He will do nothing more than prove to bring all of you down. When you listen to negativity you begin to become negative yourself and with serious illness there is NO room for negativity. Where there is life…there is hope!!!!! God will decide when it is time, NOT Dr. Z. In the meantime, I would let your Dad feel positive. And believe it yourself, Karen.

  Also, in my limited knowledge of Leukemia, I think that the only true way of diagnosing it is with a Bone Marrow Biopsy. I would not listen to a word that anyone has to say until they present you with results from a BMB.

  Patti is right. Alot of Doctors will let older people go instead of trying to prolong their lives because they are no longer valuable to society. My Dad went to his Family Physician with chest pains (turned out it was a heart attack) when he was 62 years old. The Doctor said, “Face it Erich, you are getting old.” Dad was rushed into Intensive Care the very next day. That was 17 years ago. Dad is still here much to Dr. L’s chagrin. I cringe when I think that my parents still go to him. Another time Dad had a temperature of 104 degrees, was vomitting and defecating blood and he was totally delirious. When we called for the Dr to send an ambulance to pick Dad up and take him to hospital, Dr. L said that we should wait till the next day and let him know what was happening. He didn’t want to engage an ambulance which may be needed for a REAL emergency. I got on the phone and gave him hell and he sent an ambulance. Dad, again was in Intensive Care for a week with a life threatening infection. Dad and Mom are going to let that animal give them a Flu Shot tomorrow. I shudder at the thought of them entering his building but they still trust him.

  And another thing. There is Chronic Leukemia and then there is Acute Leukemia. Patients with Chronic forms can live for a long time. They need medication and they have ups and downs but they are not destined to die right away. When the Leukemia transitions to Acute, then they have to step up and take action with more serious Chemo drugs. Please friends…correct me if I have given wrong information.

  In the meantime, until you get to see the new Doctor, I will continue praying.

  Caroline

  December 6, 2005 at 8:40 am #10490
  karenkay

  Member

  I am going to call dr. z office tomorrow and tell him that if he can’t contain the doom and despair until he can speak with me privately, then I can’t take my dad in there. He is doing too well right now to bring him in, dementia and all, and have the doc say, sorry guy, you’re going to die. If doc can’t give me that, then we won’t go.
  To tell you all the truth, I do want him to look at my dad’s blood and give me his opinion on it. Then I will have something to compare it to when I see new doctor on 14th.
  I am probably making a mistake, but I am too scared not to go on Thursday.
  Please pray for us.
  karenk
  ps, I lost the spiral notebook that I have been taking notes in for the past three months. Please pray that I find it. It has all of my dad’s med information in it and I think some personal stuff, too. I am just sick about it. I can’t remember all the stuff in it and I am going crazy looking for it. I think I left it in the hosp. er. Ugh!!

  December 6, 2005 at 3:17 pm #10491
  CarolineG

  Member

  Karen,

  I think your idea is a good one. Follow your instincts and remember YOU are the consumer. Just let the guy know how you feel and what you think is best for YOUR Dad’s emotional health.

  Is there any way that you could book an appointment for you to go and review the blood test results on your own and not include your Dad in the visit…just in case something ‘slips out’? My Dad’s Oncologist has offered that I go in and speak with him alone if I have any concerns or questions that may frighten Dad. I don’t know if that is standard practice or not.

  I hope you find the book. If you don’t, I am sure that you can get lists of medicines and you can make a timeline by phoning the different doctors and centres where you have been and ask for copies of their notes. I had to do that once when I lost our book. And…wouldn’t you know it…the book showed up in my ironing pile a week later. I still don’t know how I ended up laying it in there.

  Have a nice day.
  Caroline

  December 6, 2005 at 3:30 pm #10492
  karenkay

  Member

  I found the book. Some petitions to Saint Anthony and one more search through the house and there it was
  karenk

  December 6, 2005 at 5:33 pm #10493
  CarolineG

  Member

  Karenk

  I prayed to St. Anthony for your book too but I didn’t want to say anything to you about it. I didn’t know you are Catholic. I have been told that I am crazy to do it but it works every time.

  Blessings,
  Caroline

  December 6, 2005 at 8:11 pm #10494
  Jerry

  Member

  Karen and Caroline,

  I am not Catholic, so, if you wouldn’t mind mentioning my name now and then, I would appreciate it. LOL !!! Merry Christmas !!!

  December 6, 2005 at 10:25 pm #10495
  karenkay

  Member

  Jerry,
  No problem, you come up with something lost and let me know, Anthony is your guy!! I love him.
  
  Karen

  thanks Caroline, he was listening!!

  December 7, 2005 at 5:17 am #10496
  ww5

  Member

  Karen,

  My husband has MDS which recently progressed to Leukemia. There are treatments for Leukemia at 69–my husband is 70. You can get a lot of help on the Leukemia site. Here’s the forum link. It’s important that you go to a facility that specializes in leukemia. The statistics are very antiquated and there are many new treatments. There are also many former MDS folks over there that have had success with the leukemia treatments.
  http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&BypassCookie=true

  December 7, 2005 at 5:47 am #10497
  sugarwhale

  Member

  Dear Karen,
  I agree with Patti and everyone else. Is your dad going to die? Yep. So are you. So am I. So is everyone now gracing the Earth. But there are not only good treatments, there are even better and better treatments as time progresses. There’s a lot of hope! Things with your dad don’t sound too bad to me. There are people in our Forum who have had acute leukemia for…years. So, don’t despair! I’ll share with you MY dad’s last words: “Everything’s going to be OK!”
  ~~~ Janet

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