Anna's Cancer Blog

Its Always Something

Hello Folks,

First I just noticed that many of my friends here sent me birthday wishes in December so I want to thank everyone for the well wishes and just let you know I don’t check my site that often so don’t be insulted – my silence is not intentional! Second, I have totally quit eating cake or anything sweet and am on a strict diet. Have gained 20 lbs!

I have long story so I’ll get moving. Back in October, 2011, I had a PET scan, as usual for my sixth month checkup. There were two small light ups in the lymph nodes in my chest. My RO said it did not appear as cancer would but more like inflammation caused by some sort of infection – probably the notorious western culprit Valley Fever. This is caused by a fungal spore that lives in dirt in many parts of the country and I live in a very windy area (think Haboob). He said, “But your head and neck area is pristine!’ I was sent to a pulmonologist who agreed with Dr. Frye and tested me for Valley Fever. Well, for you who know my history, as usual, nothing. She then ordered a CT with contrast and found numerous nodules in my lungs so the questions started, “Are you feeling all right?” Yes, “Are you breathing OK?” Absolutely. I am FINE! These are also a symptom of Valley Fever.

Later, at home, I googled for symptoms of VF and found that the initial symptom is a red prickly rash which I had experienced the week before my PET scan. I had been walking my dog on a windy day and got caught up in a dirt devil. I remember thinking, “That can’t be good!.” I told my pulmonologist this and she tested again for fungal type infections. Nothing. Next step was then a bronchoscopy which is like a colonoscopy only into the lungs. I faired well and had no after affects but she said she could not reach to a nodule so she washed the lungs with saline and withdrew that for testing. AGAIN they found nothing. To which this does not mean nothing is there, it is just not measureable.

Then, I started getting these lumpy things on my forearms and ankles. Some hard calcified things and some just soft lumps so I went to my GP and she sent me to a general surgeon to have some removed and looked at. (for some reason all my doctors lately have been female!) Whoosh. So I had surgery on my arm, lumps were evaluated, and my surgeon said they were granulomas – no sign of cancer, arthritis, or fungus – nothing!
She referred me back to the pulmonologist (who of course costs an arm and a leg – no pun intended) which my insurance only partially covers. Instead of going back to the pulmonist, I walked down the hall to my GP and told her to give me the pills for Valley Fever and see if that cures this whole stupid situation. I told her after this, I am done with specialists.

Posted on February 25, 2012 at 8:56:59 AM by Anna (Its Always Something, 10 comments, 925 views)

Wow, the doctors were determined to find something. Sometimes that’s good, but then again you think of the In conveniences and out of pocket expenses. I hope the medicine works, but otherwise, it seems you are doing well, short of this latest interruption.

Posted on February 25, 2012 at 9:26:11 AM by Paul

Thanks Paul! Yes, it was $500 for the surgery, then every specialist is another $30 on top. I think I’ve coughed up over $1000 for this fiasco!

Posted on February 25, 2012 at 10:06:29 AM by Anna

Two Years and Going Strong

Hi There Bloggers

I am now two years out of treatment and just had a visit with my surgeon. I have had pain in the back of my tongue and inside my ear for a long time (since radiation ended). Just a few weeks ago, the surgery scar which runs from behind my left ear down my neck and then along my jawline and under my chin began stinging and itching uncontrollably. The salivary glands on that side (the radiated side) also would sting whenever I ate something strong tasting. I guess I did not realize it but for the last two years I must have been numb from the treatment. I had also badly bitten my tongue a few months back to the point where I bled significantly for an hour so when I began investigating the pain on my tongue, I saw a huge lesion there forgetting I had bitten it. I made an emergency appointment with my radiation oncologist because he can fit me in easier than my ENT/surgeon can. Unfortunately, I did not emphasize that I had bitten my tongue and he was stumped and told me I would have to go back to my ENT to look at it. Back to the ENT who said I was fine. Well, long story short, my neck started stinging three weeks ago so I went back to the ENT today. The nerves are reconnecting and the pain, even in my ear and tongue is part of the process. Why no one had warned me about this I don’t know. My ENT said that I have the classic symptoms and I asked how long this will last and he said he could not say. I did some research and found people who have this kind of pain even ten years later. The doctor said he could give me a drug that blocks the nerve ending feelings but I have been taking an aspirin a day and it works very well. Touche. I wanted to take this opportunity to let all the Head and Neckers know that this may happen to them and not to panic like me. I also changed my picture so you can see my 60 pound weight loss which is now only 50 pounds because, yes Martha, I am still eating cake! Hugs to everyone out there and keep up the good fight! (I bit my tongue on the right side four times yesterday – go figure)
Anna

Danean likes this.

WOW! Anna you look great…

The nerve pain is different for me and 18 years later it’s like day one. My nerve endings never grew back and that’s what they are, “Nerve Endings” when my wife touches my neck or when the barber touches my neck it’s like getting electrocuted and I jump. To touch that area one has to touch quickly and firmly and then it not to bad. I was never told the endings would grow back.

That said, it’s great to hear from you and I’m really glad all is going well. Once again, you look great.

Big hugs my friend,

Ron

Posted on June 9, 2011 at 10:04:39 PM by Ron

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