Surviving Cancer

In November of 2004, I was diagnosed with follicular,non-Hodgkins lymphoma, stage 1, slow growing.

In September of that year while applying my makeup one morning, I noticed a small lump under my jaw on the left side. It was not painful, but my ear had been hurting, so I presumed I might have and ear infection. I made an appt. with my GP and after an exam, he said I didn’t have an ear infection, but my throat was somewhat red, so he put me on antibiotics, which I do not tolerate well. I went back for a re-check and the lump was still there, so he ordered a throat swab which came back negative for infection, and he then referred me to an ear, nose, and throat specialist, who recommended a stronger antibiotic, and told me to come back in 10 days if the lump was still there.

Well, to make a long story shorter, it was still there and he removed it in his office, sent it for a biopsy and I got my first diagnosis. He referred me to an oncologist who ordered bloodwork, a 2nd biopsy, as a confirmation of the 1st and she also ordered a PET scan, CT scans of my neck, chest, and abdomen, and a test of my bone marrow, which I have to say was not all that bad. (felt more pressure than pain during the extraction….piece of cake!) The diagnosis was correct, the cells did not show up in any other places. She did recommend that I have radiation treatment to the area where the lump was removed and I had 17 treatments to my neck and chest.

I have to say that was not any pleasure cruise, as I had severe burning of my mouth and esophagus and lost saliva and my sense of taste for approximately 4 months. I also lost 30 some pounds. (It’s very difficult to eat when you can’t taste anything or swallow because of the pain.) I also had to carry a water bottle 24/7 as my mouth was so dry that at night I would wake up and my tongue would be stuck to the roof of my mouth and my teeth would be stuck to my lips. Looking back I would say now that I was somewhat depressed during the recovery process, because my radiologist and my oncologist did not give me any insight as to what the after effects of the radiation were going to be. (I think they do that on purpose, because not everyone suffers from the same effects and they don’t want to put ideas in your head.) When I would tell them my complaints, they would tell me though that these things were normal and offer me encouragement. When my taste started to return, I found it had changed and I no longer like many things that I once loved, like Pepsi and sweetened tea.

I drink mostly water now, which I used to never drink and I found out that the taste of vegetables was the one thing that finally tripped my tastebuds. My taste would come and go at first, but it did change and I find it hard to tolerate spicey hot foods now and I still have problems with things getting stuck in my throat, so I have to drink lots of water while eating. At first everything, including water tasted like salt and the inside of my mouth felt like it was coated with Crisco….I know, not a happy thought! I also suffered from L’Hermittes Syndrome….it’s the feeling of numbness or a tingling from the back of my neck down my spine and from my shoulders to my elbows and my hips to my knees, when I would bend my head forward to look down. (Feels sort of like when you sit too long and your leg goes to sleep and tingles….or a slight shock down your spine.) It eventually goes away, but was one of those things they let me discover on my own.

It will soon be 5 yrs. since my original diagnosis and I am doing well. I go every 6 months for a checkup, which includes bloodwork, and I either get a chest x-ray or a CT scan of my neck, chest, and abdomen. I had a little scare last July, as my CT scan of my spine came back a little fuzzy, but my oncologist ordered a bone scan and it showed that I have some degeneration of a vertebra. I want all of you to know that I was very afraid when originally informed of my diagnosis, but I know that God is in control and I placed it all in His hands and that has given me lots of strength to deal with my situation. All the worrying in the world will not change things. It is best to foster a positive attitude, find a doctor you trust, and follow directions. My oncologist has given me much hope and I wanted to pass that along to all of you as well.

There are many things I have left out, but as I said before, no two people will undergo the same experience. I would like to add that like many other lymphoma sufferers, I have psoriasis, which I have heard is very common and there are those who think that some of the meds used to treat psoriasis can compromise your immune system, and my oncologist has since warned me to be very careful about taking anything that might further compromise my immune system. She does not say that is what caused me to have lymphoma, but there is always that possibility. There is lots of informaton out there. Fortunately, I found someone who had a diary online who had walked in my shoes previously and was a great help to me with my late side effects of radiation. He gave me lots of good information, so I hope that by passing along some of my experience I too can help someone else.