[MOL] Katiesgma/Susan [05903] Medicine On Line


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[MOL] Katiesgma/Susan



I am really glad that you hit it off so well with your oncologist and felt a connection.... How did the meeting with the surgeon go today?
 
I have owed you an email responding to your question about my cancer and I am going to answer that right now...May I warn you that this is the story and is very long....
 
September we moved and having spent 3 days in a 115 year old stone basement packing up (I have allergies to mold) I thought that I was having sinus/allergy...  I had smoked for 30 years and had quit January 1997, but went back to smoking after a few months...  5 days after we moved here I couldn't unpack all day and was spending part of the days on the couch with flu/sinus infection.. So I called the doctor and went in for help..  She gave me antibiotics and I came home and got worse...  I was on the couch all days..
 
I called her office a week later and told them the pills weren't working and I needed to come in... Was on a Friday and they told me to take the final two days worth and then call if I wasn't well.  I told them that two days wouldn't make me feel that much better and they still said wait.  By Monday I called back and they said come in and I couldn't drive... So they phoned in a different
prescription and my husband brought it home.  This didn't work either and I called again and they set an appointment.. I went in and she decided to order chest x-rays for me as well... this was on a Wednesday.
 
On thursday evening I got a call from the nurse saying that my doctor wanted to see me as her first appointment on Friday, before she started seeing patients...  I asked her if this was serious and the nurse said no, that if it had of been the doctor would have called me herself..
 
So I turned down 3 offers to drive me to the doctor on Friday and drove myself.  When she walked in, she opened my file and said there is no easy way to say this, the x-rays showed a mass in your lung.  I asked "what does that mean?" and she said "Carla, everyone has known for years that smoking causes lung cancer."
She said there really wasn't much that she could say, that she was going to have the nurse schedule a CT scan ASAP.  She asked if I had any questions and I did "did this mean I was going to die"?  I mean can this be cured?"  I don't know.
 
After the nurse came in and told me that my CT scan was scheduled for Sunday at the hospital, I got up to leave and as I opened the door to the waiting room which was full, the tears started and I came back in.  The nurses were really kind and took me to the back and cleared out an office so I could cry it out and see who could come pick me up...
 
I called everyone and no one was home....  I couldn't track down my husband, or my parents either...  The only friend I could reach was alone in the office and couldn't leave.  So I called my church to see if anyone was there and got in my car.  As I drove around I-275, I couldn't see the road.  I truly don't know how I drove from Montgomery to Eastgate, which is about 20 minutes...
 
I got to the church and fell into a dear friends arms and we went into the sanctuary and I told her and we prayed...   The Pastor returned and I met with him as well.  I drove home and started making phone calls.
 
Sunday was the CT Scan.  The following week I saw a pulmonary specialist and he scheduled me for a bronchoscopy.  In for the pre-surgical testing, bronchoscopy and they couldn't get a good biopsy...  so they scheduled another... same routine and after a couple of days the same answer....  no good biopsy..
 
So they said I would have to have surgery for a biopsy.  I was put through pulmonary function tests and sent to see a surgeon.  He then explained to me the  procedure and I had a fit to think that they would do that type of surgery for a biopsy... especially since they thought that if it were small cell cancer, or hystoplasmosis they would just close me back up..
 
I asked the surgeon if there was another way and then back to the pulmonary specialist and was told no...  I was so depressed.  I was scheduled for surgery in 2 weeks.    I stayed home and cried alot...  Then a friend of mine called and said "Carla, what is wrong with you?  This isn't like you to take this lying down and not put up a fight and I can't believe you aren't getting atleast a second opinion".
 
This was close to the end of October and I was exhausted and felt like I had already gone through all that I could.  That little bell went off though and I knew that she was right.  So I scheduled an appointment with another surgeon and tryed to get one the same day with a third...  This was on a Thursday and surgery was scheduled for Tuesday.  I saw the second surgeon and he concurred with the first.. In fact he offered to do the surgery with the first surgeon as a team, as my tumor was located in the right bronchus and right up against the pulmonary artery.
 
I liked both of the surgeons and felt they had both explained well, the first showed me pictures, the second was good, but there was a bell ringing in my head, especially when as I was leaving I told him I had one more opinion and who and he seemed a little testy and asked me why I was going to see him.   Well I am a little spunky and that was enough to make me go, so I drove over to the third doctors office, though I was actually supposed to call first...  Well I sat and waited and I got to see him.  When he walked in, he picked up my x-rays and I popped off and said that I could already tell him everything he would see and I knew what had to be done..  The good news is that he is actually very much like me and he chuckled a little and suggested that I let him look and decide.. 
 
Well, we looked at the x-rays, he called in some visiting associates and asked their opinions (which concurred with his).  We took the x-rays over to the hospital radiology department and they gave theirs...  This doctor had a different procedure which he pioneered for getting to the lung and he said that even if he had to remove the lung he could do it through the 4" incision and without breaking a rib.
 
I can't tell you how I felt after I met him and I bought into him.  There was such a strong feeling that I had been led to the right person and I think I almost begged him to do the surgery.  I called my primary care doctor and told her that no matter what I was going to have this doctor do it and I expected her help if I had any problems with the insurance company..
 
The next day was Friday and I was scheduled for surgery on Monday, Nov. 3rd.  I called back my pulmonary specialist and asked him why he had not told me about this doctor and his procedure.  He said that the first surgeon had looked at my CT scan  and x-rays at Bethesda and so he felt obligated to send me to him.. I asked how he could do that when I had specifically asked if there was anyother way..  He didn't have much to say and I told him I was changing surgeons and I never heard from him again.  I then called surgeon #1 and canceled the surgery, I called the hospital and I called surgeon #2 and told him of my decision.
 
Monday I went in for surgery, expecting to be closed up after the biopsy.  After five hours of surgery and one hour in recovery I was taken to my room, with no chest tubes..and no lung..  I remember my doctor coming in and asking him how it went.  He said he got it all.  I was so relieved.
 
What I didn't know then, was that meant that he got clear margins in the surgery and removal of the tumor and I would  need to see an oncologist in 3 weeks and the oncologist would then tell me that I had a 30-40% chance of living 5 years, but the first two years were the most critical..  I felt like a cat freaked out with my claws locked into her ceiling and I couldn't get down!
 
This was the day before Thanksgiving and I wanted to cancel going anywhere on Thanksgiving, but we went with my parents out to dinner and then the kids and my brother and his kids all came over and I told them all.  Everyone tried to carry on normally, but it wasn't a normal day.. I was still numb...  The first oncologist said to do nothing and she would do x-rays in 3 months.. Well I have no confidence in x-rays as I learned that my tumor was atleast 2 years old and I had had 3 sets of chest x-rays done, including one set 2 months before the ones that showed the mass..
 
I then went to see another oncologist, who I liked very much and we spent an hour together discussing all of this thoroughly, but he never even examined me.  My surgeon had scheduled me for a PET scan and I asked this oncologist what he thought of them and he said they were an expensive test trying to find a place that it worked.  He said that it had been invented in Michigan 10 years ago and wasn't good.  
 
So I went back again to my surgeon and I was stressed.  I told him that I was having a problem finding an oncologist and if I bought into him... which I believed in him, how could I go to an oncologist that didn't agree with him and what he believed worked?  He then sent me to the oncologist that I now see.
 
I have been very blessed here too.  Though he and I didn't agree about treatment.. He wanted to do chemo... taxol and carboplatin and I prayed and prayed and couldn't find peace with the chemo and turned it down.  Once he was sure that I couldn't and wouldn't do the chemo, he has still been there supporting me through this cancering journey... but we still have some differences that are major..  Still, I know that we can communicate and I believe that he will support my decisions and beliefs..
 
He says if the cancer comes back then there is nothing he can do for me, not chemo not anything.  He said I would die.  He feels there is no reason for finding it early as it will make no difference.  I believe that it will make a difference.  Now professionally, I am sure that he is working through his past experience and statistics.
I am not a statistic.
 
I know he believes in the power of prayer, faith and belief.  He is the one who said to me that whatever I believe will work, will work.
He sat and held my hand while I cried after seeing the gynecologist who found some abnormal cells and frankly hurt me alot.  He is caring and he has said he will be there to support me through the cancering journey and I believe he will.
 
So now you are up to date with my physical part of this cancering journey.  There has been so much more emotionally and that is still revealing itself in many ways.  God has done some wonderful things and given me many blessings through this too.  I have changed and am growing from all of this.  This is also going to make me make some changes in my life, but I have decided that I need to be true to me and I either want to live happily or die at peace and if I have anything to do with it all, it will be both!
 
Wow, I feel like I have rattled on for days and I am sure that you do too.  By now I am sure that no one else but you got this far, and you may have given up by now too. LOL!  I wanted to write this much to you now, because you went to see the surgeon today and I have a really good idea that I know what you heard and how you feel.  For one thing I wanted to show you about additional opinions and for another, I wanted to let you know that I really do understand...
 
I will be here for you and I promise that though I am active and I tend to say what is on my mind and in my heart... I am also a very good listener...  Let me know how it has all gone....   May God Bless you.  With Love, Carla