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!