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Nunnie's Story (Part 1)


[Note:  This exchange of e-mails was originally on www.mywebman.com, put there by Doug Large, who is the author referred to below.  I have republished them with his permission, as he was no longer going to host these pages on his site.  This story relates one of the realities of  Dercum's Disease!]

Authors Notes:What follows is a record of email messages between myself and a lady named Pam..aka..Nunnie. I present it here to show and to tell her story..a story of her strength and her hell on earth. The first excerpt is from my guestbook. After reading the complete presentation I hope that you will gather strength from her courage and that I have helped in someway to lessen any pain or suffering you may be going through..We are not alone after all.


Name: Pam

Website : Nunnie's Spot on the Web

From : Beautiful Green Oregon

Time : 1998-01-25 17:10:38

Comments : Hi,

First of all, please accept my apologies for not signing your Guestbook last night. I submitted my site for your award and was going to sign it before I left, but I got so caught up in the journal of your lovely wife that I totally forgot.I would also like to say that my heart and prayers go out to you. I am not totally done reading it yet. I returned today to start on part 2 and remembered that I had to sign the guestbook. You are a wonderful man for having stuck by your wife's side through all of this. You can tell through each and every word that you write that you loved your wife with all your heart. There are not many people that I could say that about.Your wife's situation is very similar to mine at the present time. I think that is why it has touched me so deeply. I don't know if you want to hear what is going on with me, so if you don't, just stop reading.

In September I discovered a lump in the crook of the elbow on my left arm. It was about the size of a prune or a little smaller. I, of course, went to my regular doctor to have it checked out. It was extremely painful to the touch and other times just on it's own. The docotr informed me that it was not cancer, but that it was a Lipoma or fatty tissue benign tumor. I asked him to do a biopsy on it to be sure, but he refused.

2 weeks later I discovered a very small one in the crook of my elbow on the right side. This one was excrutiating. If you even lightly brushed it I would scream in pain. I, of course, again went to the doctor. Again, I was informed that it was NOT cancer and that it was a Lipoma. The doctor was very emphatic about it. I again asked for a biopsy on the first one. Again he refused. In fact he practically laughed at me for requesting it. Rather than go into a day by day account of what has happened, I'll just summarize it.

Since the second lump showed up, they have continued to grow. The one stayed big and round and turned out to be the size of an egg. The one on the right stayed flat, but spread out. Then more and more lumps started appearing DAILY. I mean DAILY. I would go to bed and wake up and find a new very painful lump. That night when I would go to bed I would discover another one. One day I found a small one next to the big one on my left arm. At 8am it was 3/4 of an inch long by 1/8 wide. By noon it had doubled in size. That was about 3 weeks ago. It is now an inch wide and about 2 inches long. The lumps have shown up from the crook of my elbows all the way up to my shoulder. In the last 3 weeks they have now started to travel down my arms towards my hands. In addition they have appeared under my arms, on my breast, and have started to go around my back. 3 days ago, I discovered more on the back of my knees. All of the lumps are very, very painful. The one on my right arm has joined with all the newer ones. It is now 4" wide by over 5" long. Now instead of just being on the inside of my arms, they are starting to travel around to the back of my arms.I have been going to my doctor every 2 weeks or less. I have continually begged him to do a biopsy. He flat refused and emphatically said each and every time it was not cancer.

Each and every doctors visit I asked to be sent to a specialist since he did not know why the lumps were coming on so fast, growing so fast, and why they were so painful. He said that Lipomas did not act this way.Finally in January he agreed to send me to a specialist.

The first one said he thought it was nothing to be concerned about, however, he had never seen anything like it. The second one said that he had never seen anything like it before and told me he was going to suggest to my doctor that he refer me to the big medical teaching hospital. My doctor refused. He then send me to a third specialist, a dermatologist. She said she wanted to biopsy them.

"FINALLY!!!!"

She said they felt like Lipomas, but also did not understand why they came so fast, grew so fast and hurt. I had an appointment with another doctor that I had made myself that day. She also said she thought they were Lipomas, but didn't know why they acted differently either.This was on a Friday.

On Thursday (about 10 days ago) I had the first lump removed or as much as she could without damaging my nerves. She also removed the newest lump I developed since I had seen her the week before. It had grown to be about 3" by 2". She said they looked like Lipomas when she took them out, but again, didn't know why all the other stuff was happening.

I went back to my regular doctor on Friday because I discovered the lumps behind my knees. This time I told him that I had received more lumps and that the others had gotten bigger. I was very firm about it, which is unusual for me. I think he took me seriously because he then proceeded to examine me very thoroughly this time. In a whole different way than he had examined me before. This time he felt from my wrists up to my shoulders and all around my arms.

When he was done I said, "It's not cancer right?" Always in the past he has answered very quickly and emphatically and said, "No, it is not cancer." Well, this time he didn't do that. He paused for a bit and then said, "I don't think it is cancer."

I said, "You told me before it was NOT cancer."

He said after another pause, "Well, it appears to be Lipomas."

I said, "But you told me it was NOT cancer."

He said again after a pause, "Well, I don't think it's cancer because they do feel kind of like Lipomas."

I said, "Well, cancer does not grow this fast, right?"

He paused again and said, "Yes it can."

Well that kinda stopped me in my tracks. I didn't know what to say to that. He had been assuring me since September that there was no way that it could be cancer. Now, after examining me more thoroughly than he ever had before, he was no longer sure.So, I asked what the results of the biopsy were. He searched for them in my file and they were not there. He had a very concerned look on his face then. He said they should have been there by now. It had been 8 days for gosh sakes. Where the heck were they?

Since then I talked to my boss about it and she said this is what happened with her aunt who has cancer. She said they had done a biopsy and usually within 3 days it is back. She said the first test showed cancer and so from there they do additional tests to double check and make sure it is cancer. Then once it shows up a second time, they do tests to find out exactly what kind it is.

So... needless to say... this has me a bit worried to say the least. Between the fact that the biopsy is not back yet and then my doctor's reaction to the questions about cancer... well, it just doesn't sound as good as it did a week ago. But, I'm going to keep a level head about it and not worry about it anymore. But you can bet I'll be dang upset if it is cancer because I have begged since day one, back in September, to have a biopsy done on it and he would not do that.Then I very bluntly and empatically told him, "I want to go to Portland. My entire family, my mother, my grandmother, my father, my uncle, my boss, and all my friends are worried sick about me. Every doctor I have been to, talked to, every nurse I have talked to all have said that this is not normal for Lipomas. So, there must be something else going on. I want to go to Portland to a specialist so they can find out what it is. I am extremely concerned about this."

Well, as I expected, he stated that he did not know any doctors up there. Well, I was prepared for this. I handed him a piece of paper with 4 doctors names and the phone numbers on them. I explained to him that the lady said I should see one of these doctors and they would determine just which specialty and department that I should go to and they would refer me there. I won't go into the rest of the conversation, but it ended with that he was going to talk to other specialist in our town and find out who they would recommend in Portland. He did say that he would only refer me one time. That he had no intention of referring me to specialists for the next 16 years until I could find the answer I was looking for. I thought that was pretty much crap. I told him that I was not looking for a certain answer, but that I just wanted an answer as to why it was happening, what it was, and if there was something I could do about it. I also said that I didn't want to live the rest of my life getting a new lump everyday. He stated that I just might have to. Well, in the end he said he would have an answer for me by the end of the day Monday. So, if he does, then I'll stay with him as my doctor. If he will not, then I will find a doctor that will take my best interests at heart and refer me to doctor after doctor until he/I found one that would find the answer to what was going on. So, you can see... I am very worried. My heart goes out to you and all that you went through. I know how frustrated you must have been going through all the hassels with the doctors. This whole experience has scared me to death. I have no further faith in my docotr and I plan on getting a new doctor.Well, I best get going. I never intended this to get so long. I guess it just felt good to talk to someone who could possibly relate to my situation. Someone who would understand what I have been going through.Thank you so much for your time.My prayers and thoughts are with you.

Pam


Copyright 1998,1999,2000 by Douglas Large... all rights reserved
Last modified...Saturday, May 13, 2000

 


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