Wednesday, February 25, 2009

Chicago Bound

Tuesday was my three month appointment with my new oncologist .We had to drive a little farther for this doctor appointment, but believe me, it's more then worth it!
The sun was beautiful on Tuesday and it helped to make my mood upbeat. Nothing like a little warm sun on your face to make you feel hopeful and alive.
We left our house at 7am, so we could pick up our daughter in the city, and make my 11;40 appointment at Northwestern Memorial Hospital. We arrived on time and had a leisurely hour wait in the waiting room, but time flew for us while we caught up with Julie


I admit to being a little apprehensive about this doctor's appointment. This is the second oncology doctor that I have seen...the first one was recommended by my family doc. here in town. A person on his staff had gone to him and liked him very much. and there wasn't a waiting line before I could get an appointment. (I can see now why there wasn't any wait. ) This Dr#1 caused me to have so much fear and uncertainty ...and those feelings continued for along time after!

Maybe I should explain a little about the first oncologist and why I think that his behavior teetered on malpractice.
On my first appointment with Dr#1, I was told, after just a few general questions and cursory exam, that I had acute leukemia.
He had looked at the same blood work that my internist used to diagnose a viral infection (I understand that Leukemia is often missed at first, because of the similarity of symptoms shared with many other illness's)

So of course I was shocked and confused along with my husband We certainly were not expecting what we heard! After picking myself off the floor after hearing "acute leukemia" I asked Dr # 1, several questions., none of them did he answer. He did say that I was at stage 1, and that he usually takes the approach of wait and see. (Which means no treatment until the symptoms warrant.) Now in my mind, stage one was when we should treat, maybe we can get the cancer early before it spreads... So I asked Dr#1 a question about early treatment options. Dr#1 looks my way but still looking downward said "well it's not like you're going to die tomorrow"

I was stunned and my husband had the "deer in headlights" look on his face. Where did that comment come from! After a few more minutes Dr # 1 opens the door of his exam room and heads to the front desk to write scripts for a bone marrow test, cat scans, and blood work..

That evening, Jim researched Acute leukemia on-line and his face told it all. Not good! Chronic Leukemia was also mentioned on line and it's not great either, but maybe more manageable then acute. Scientists are doing a lot of research on blood cancers and chronic is definitely the better of the two. To me it's a difference between no hope and hope ! I needed something to hold on to...hope is everything in fighting any disease!

Next visit with Doc#1, was after the blood work (He would scheduled a separate appointment for each test. Even if he had the results from the other tests , you had to have a separate appointment !) $$$$$$
The blood work corroborated his diagnosis, he said, and we would wait for the bone marrow to be the final piece of the puzzle.

So now we're waiting...! I thought he already knew.....?

On my way out to the front desk this time, I noticed the paper that #1 gave me to give to the nurse. Written under the diagnosis line was chronic not acute. Had he made a mistake and written the wrong diagnosis or did he make a mistake on my first visit.....? Why didn't he tell me.... cause there is enough of a difference between the two, to give me hope.
It was huge to me! Obviously not to him.


Dr# 1 was so sure that I had acute leukemia on my very first appointment without the needed testing, that he misdiagnosed me. Everyone can make a mistake, I know that. Doctors are human. He just didn't bother to tell me about his error and either figured that I wouldn't know the difference or hoping that I wouldn't know the difference.

The Hippocratic Oath say "first do no harm?' Well there was harm done...and Dr#1 owed me a corrected diagnosis. I didn't deserve one more minute of fear!
I had another appointment two days later for the bone marrow results. I would address my questions to the doc then!
"The final piece of the puzzle" he had said. Funny thing, at this appointment, all the Dr wanted to talk about was a blind trial that he thought I should be in.... HUH? Jim and I looked at him, and I said.."why do you want me to do this trial, I thought you just wanted to watch and wait?" Again, no answer, Doc # 1 mumbled something about Jim and I not being ready yet to commit to his blind trial...and before we could clarify which type of leukemia I had, or why he wanted to now treat me with chemo, Doc# 1 was out of the room telling his nurse to cancel my next three appointments and to schedule the next appointment in three weeks.

What just happened, what did I miss?

...and as doc# 1 was walking down the hall, he said that he would do another blood test in three weeks and it would probably show that my white count would have doubled....and then we will talk about the trial!
Needless to say,that was my last appointment with doc #1, I told Jim that I couldn't go back, I had to get another opinion and another doctor!

At this point,I didn't trust anything that he was telling me.

Funny side note,on our first appointment with Dr #1. Jim can't sit still ,so he spent his time waiting, by reading the plaques on the wall. Almost all of the plaques were concerning medical trials and how many people this Dr had signed up. I didn't know this until after our last appointment.
Clinical trials are important...so I'm not going to be judgemental. I guess my trust was gone at this point regardless.

I didn't have any idea what I was going to do...there are only 2 groups of oncologists in my town and there was a long wait to see the better ones.. Dr # 1 was part of one of the two groups. I couldn't go back to that office again. I was really down...tired and feeling so confused and scared!

Some of my posse here went through this period with me and encouraged me the whole way. Thank you all so much. When all I wanted to do was curl up in bed and stay there, you wouldn't let me.
Thank God for girlfriends,.... mine wouldn't let me stay in this condition long , nope they pulled me through and with the divine intervention of a couple of what I call, angels here on earth, I was able to get past the fear and reach out.

Kay, whom most of you know over at musings, was with me from the very beginning. Pushing me ever so slightly to get a second opinion, to find a doctor that was right for me! To find the courage to tell my children about my health because I hadn't done that yet. Whew...that was hard to tell two of them on the phone..

Enter Dr # 2 .... he lived next door to angel #2.
The day after my last visit with Dr#1 ,my second angel, Dianne called me and asked me how my appointment with the doctor went. (She had no idea that I had been diagnosed with leukemia at this point.). I said I'll tell you later, I hadn't really decided what my next move would be.
So I asked her a question about her daughters wedding...she paused, and said "what's wrong?"
OK.....I'm real bad at distracting people, I guess.
I told her and when I finished, she said that she would call me back in a few . She did call me back in 5 minutes and told me about this doctor that lived across the street from her....she said that he was good and even treated the mayor of Chicago's wife for breast cancer. Dianne had already called the Dr's wife and I was to call her husband, Doc#2 ,the next day and talk to his secretary. I did just that, but I didn't think that I would hear anything ..... at the earliest the next Monday..... it was Friday after all.
Shock of shock.... Dr#2 called me back an hour later ...and the rest is history!
I knew after the first five minutes of my appointment, that # 2 was the Doctor for me. I just knew that he was in this fight with me!


So Tuesday was my second appointment with Dr#2 , and I can report that my white count did not stay the same...it went down by 22%! I have chronic leukemia ...not Acute leukemia and I didn't double in three weeks or three months.

As the sun was setting , we made our way home feeling more hopeful and relaxed.

PS...sorry this is so long. I've said it all , now I can let it go!

10 comments:

  1. Oh Peggy, I'd kill him. At the very least you need to know what you've got, and what's ahead! I'm glad you're rid of him and moving forward: good luck with the new doc and all your treatment to come.

    I'm glad you had sunshine for your drive--we could all use a little more of that these days!

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  2. Susan;

    It is all behind me now. This post of mine was much longer then I had hoped! I tried to cut it down but it still came out way long! Good part though is that it's over, it's out of me!

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  3. Hi, saw you on the Brit ex-pat's page and am responding to your request...

    "Cheesed (or "cheezed") off": to be really, really irritated, as in "He didn't call me over Christmas and he knew how important it was to me to tell him Merry Christmas....I'm getting cheesed off with his lack of committment".

    Enjoy!

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  4. You have been on quite the emotional roller coaster. Wow. My heart goes out to you. I have been working in healthcare for over twenty years and have learned that we all need to take charge of our own care. We need to learn all we can learn, ask tons of questions and don't settle. I have had several different roles, but I learned the most when I did clerical work in critical care twenty years ago. I am so glad you were referred to a good doctor. This will make all the difference in the world and your peace of mind is so vital. My prayers are with you.

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  5. No, Peg, this wasn't too long. Not at all. I'm glad you were able to write it down so you could look at it and get it off your chest. I really believe that's important. I have always admired your strength and focus. Thank goodness you were able to reach out and find a better doctor. Please say hello to Dianne for me.

    There are definitely crappy doctors out there just as there are crappy everything else. You have to make sure you get somebody you can trust. The operative word here is trust.... let's add competent here also. I'd love to give Dr.#1 a swift kick where it would hurt most. Ooops! Sorry... got carried away there.

    What good news about your white blood cell count going down. Woo hoo! I can go to bed with a smile on my face now. What a relief! I can't wait to tell Art. Please give my love to everybody.

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  6. Joyce;

    It's a funny thing about taking charge. I can take charge for my Mom...I took charge for my son after his accident... but not myself!
    I've had health issues all my life...so it's not like this was my "first rodeo" . I guess when you know better, you do better and I know better now.
    You advice is so right. Nice to have someone that knows the field tell me that I was right to seek another opinion!

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  7. Kay;

    I did work on getting my post shorter.I think I failed at that. Thank you for saying that I didn't need to....I got it all out Kay...feel so much better. Thank you for all your love...I feel it brushing my face all the time.

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  8. I'm so glad you didn't stick to the first doctor. When something doesn't feel right (and what he did was clearly wrong...he should've answered your questions and not made inappropriate comments!), we must question it. As time consuming and frustrating as it is, a second opinion is a must when dealing with a potentially serious illness.

    I pray you continue to get good news and I'm happy you're comfortable with Dr. #2!

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  9. wow - Peggy, I'm so glad things are looking up for you! I obviously don't know you personally, but you seem like such a nice person. My thoughts are with you. My husband is an attorney, and he deals with situations like this often. It's shocking how often this type of thing occurs.

    BTW - I'm entering you in to my contest to win the bookworm! ;) I'll take a look through my products and come up with a suggestion or two for your son!

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  10. I know this is a chronic disease and I have now accepted that I have it, but my life has to be lived and I plan on doing just that.
    I like your stuff and I like what I see on your blog.
    Thanks for entering me in your contest...sweet!
    My daughter and I are working on our cat blanket for retail. We are moving slowly and taking it step by step. We're enjoying the process.

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