diagnosed with lymphoma

[calmloki]

Ratface, last year we went to my gal's 40th HS reunion. A great group of old raisins, they had slideshows of them all through high school. One guy was looking dapper and quite a bit better than most - he had improved since his perpetually pudgy HS years. Fun guy, a professional photographer. Everyone was commenting on how good he looked and asking how he had lost the weight - his answer was "the cancer diet". He'd had a sore on his gum that wouldn't heal - turned out to be a tumor, by the time things were done they had removed half his lower jaw. Horrible, right? Here's the kicker - they replaced that portion of his jaw with a chunk of his hipbone. His joke was that he now had the jawbone of an ass - as I said, funny guy. I talked with him quite a bit and really looked for sign of the operation or weird speech and could not spot a single thing. Think his operation was several years prior. Freaking medicos are getting pretty darn tricky! Soldier on ol' horse - you keep ticking and they'll do their part.

 

[Alan]

Ratty,

Thanks once again for the regular posts, you are an amazing guy and inspire us all.

 

[bubba]

RF, I check for your updates regularly and am so encouraged by your strength through this ordeal.

 

[ratface]

Just a real bummer of a Friday which was supposed to be my last chemo. DW and I were all set at our favorite chairs by the coffee and bathroom when the nurse said my white blood cell counts were too low for treatment. I was told to go home and avoid getting sick. Depresssed me for the rest of the day. Going to try again on Monday.

Rest of friday was horrific in fighting with insurance company and company that is providing my tube feeding supplements. Constant phone conversations that were really all unnecesary. In the end it all worked out and everyone is doing what they should have done to begin with and I had my supplements delivered. But what a battle. Was glad to see Friday end. Hoping My blood counts are up by Monday, I was really close to the cutoff. I've decided to do nothing but rest and get proper nutrition. One of the hardest things for me to do is to be idle.

Nutrionist put me on Jevity 1.5 cans of nutrional supplements, six per day throught the fedding tube. Looks and smells like PET milk. Should be 2000 calories per day.

 

[Alan]

Hi ratty,

Disappointed to hear that your last treatment has been delayed a little but it sounds like that it will happen real soon once you get the right nutritions into you. But what a bummer having to stress out with getting all the insurance and other details sorted out. It sounds like you have all that in order as well - well done.

Keep going and keep on posting.

 

[TomCat]

Keep going and keep on posting.

To Quote Alan...

I am just a newbie on this site but I am in awe of your journey. It probably should be us that gives you strength...but find that I anticipate your posts and that word from you invigorates my day. Continue to Post and Pray...maybe not in that order...

Thinking of you...Tom R in Two Harbors, Minnesota

 

[shoe]

Ratface, do you and DW have something fun planned for when your chemo is over and you are back on your feet?

 

[spncity]

Hi ratface

I don't know if this is anything worth checking out - but if you have low energy days it might be good just for that. Only you will be able to be the judge on whether or if it is something you can tolerate. I did a little reading on it last year when a friend was diagnosed with prostate cancer. Supposedly Lance Armstrong uses it.

Energy Drink May Fight Cancer - 11Alive.com | WXIA | Atlanta, GA

Kindest regards,
spncity

 

[Amethyst]

Just a real bummer of a Friday which was supposed to be my last chemo. DW and I were all set at our favorite chairs by the coffee and bathroom when the nurse said my white blood cell counts were too low for treatment. .
.

Bummer. But think of the number the chemo must be doing on the cancer cells, too.

Nutrionist put me on Jevity 1.5 cans of nutrional supplements.

Glad you're getting proper nutrition; hope it stops the weight loss. Each can you open is another "can of whoop-ass" opened up on cancer's head.

 

[2soon2tell]

RF,

I hope you get to ring the bell on Monday signaling the end of your chemo treatments. It's a sweet sound and one that you'll remember for a long time. My treatment center took my picture with all of the chemo nurses for posting on their board.

Best wishes,

2soon2tell

 

[Alan]

I just got off the phone with my sister in England. When we visited her in May she was doing well and life was good. A month later and she had her annual "well woman" check-up and cancer cells were found in the pap-smear.

A biopsy confirmed cervical cancer and she had laser treatment to remove 5mm of tissue. A further biopsy showed that she still was not clear so she opted for a full hysterectomy which was 5 or 6 weeks ago. (she is 40, has an 11 yr old daughter and no desire for more children).

On Thursday she had her latest appointment with the oncologist and she is completely clear. She has a follow up appointment in January and will be on a 6 month test schedule. She went back to work on Friday and is absolutely delighted with how things are turning out. This last few months she has been up and down with her emotions but always had a very positive attitude.

I know that it is nothing compared to what you are going through Ratty, but I wanted to share this success story with you because I feel sure you also are going to beat this monster called cancer.

 

[freebird5825]

Very glad you prevailed with the insurance company nonsense. Just be persistent and remember you paid your premiums, the services are covered, and be the "squeaky wheel".

Sorry to hear about Friday's no-go. Hope things go better today.

 

[ratface]

Well I got to ring the bell on the last scheduled chemo. Turns out my white count had doubled since Friday. My temp was 97 degrees. All systems go. Kidney function a go also. I was a little worried since last night I was running a slight fever, 99 degrees. This morning I awoke with a headache I'm assuming because of poor sleep. I was certain the fever had risen and chemo would be postponed again.The neck radiation burns limited the most comfortable postions to sleep in. Skin is cracked, dry and ozzing. Sticks to the pillow. Looks awful. Took one of DW's towels and cut it into strips. I now use one strip to wrap my neck in the shower to keep the water off. Took two asprins, showered, cleaned and taped the feeding tube, and headed for treatment. Dw said I was walking stiff while looking at the ground with no side to side mobility in the neck. The radiation nurse immediately asked me what was wrong, took one look at my neck and suggested I get on a fentanyl patch. I hemmed and hawed and declined. Narcotics constipate and I dislike that more than neck pain. RAD tech said I needed something for the neck. Other RAd tech recommened special type of soap which contains aluminum. Supposed to sooth open wounds. Bought some on the way home. Also bought some spray on saline which wasn't much help.

Chemo nurse took one look at the neck and didn't say a word. Returned with a script from Doc for pain meds. DW filled it while I was getting infused. Miracles never cease, one dose and I can turn my head without pain. Guess I'll try and manage the constipation. Also switched to a different topical cream,"RADX", we'll see how that goes.

Got home and found seven cases of Jevity 1.5 from the company which ran me ragged on Friday. I'm stocked for the next terroist attack.

ALAN- I'm so glad for your sister. Cancer is nothing to be trivilized. Any form can kill left untreated. DW has had abnormal pap smears for 27 years now. They call it Dysplasia or pre-cancer. Luckily it remains the same. She had a total hysterecty my years ago since her mother had died from the disease. Gets regular check-ups. Ironically her doctor changed hospitals and DW followed. New hospital used different Lab. Pap smears now come back a lessor degree of dysplasia.

 

[W2R]

Ratface, at last you are done with the scheduled chemo treatments! You got through it and now there aren't any more scheduled. That is just wonderful.

 

[TomCat]

Ratface...congrats on a step forward. A little time off now to "heal" a bit?? You have earned it...Tom R

 

[Alan]

Hi Ratty, thanks for the detailed update and also for the kind words for my sister.

Congrats on getting through the final chemo. I'll all be watching, waiting and praying for you.

 

[DangerMouse]

Congrats on graduating from chemo. Hopefully all the problems associated with the treatment start to fade.

 

[Martha]

Ratty, good to hear you are done with the chemo. I trust you will be feeling better soon.

 

[freebird5825]

Well I got to ring the bell on the last scheduled chemo.

Got home and found seven cases of Jevity 1.5 from the company which ran me ragged on Friday. I'm stocked for the next terroist attack.

Last chemo is in the rearview mirror.

You must have really shaken up those insurance turkeys to get 7 cases.
I respect "feisty". Now I know who to call for ins company telephone call backup.

 

[Urchina]

Yay! I'm so glad you're done with chemo, and may the radiation treatments go quickly and with less pain...

Thinking about you. Good luck, and onward!

 

[vicente solano]

Ratface: Sorry, but I don´t remember if you smoked...
Weren´t you aware of any symptoms prior to the detection of the problem?
Every night before going to sleep you and your courage are in my thoughts and prayers.

 

[ratface]

Hi Vincente, Please keep the prayers up. This type of cancer has a 20% recurrence rate, I need all the help I can get. Yes I smoked for 25 years. I was a pack a day guy. I also enjoyed my beer. I have been a non smoker for the last three but I guess that wasn't enough. I can't go back in time. You just think it won't happen to you. Many people also have this cancer who never smoked. Sometimes its caused by the HPV virus. In retrospect it was stupid to smoke at all.

 

[ratface]

Freebird, I put the fear of God in both those insurance turkeys. Kept telling them I had nothing to eat and it was on them because of their negligent business practices. I know I was a jerk but I'm fortunate that DW and I both drive and live in a metro area where we could easily go buy some temp supplements. The problem is that there are many who cannot and might have been totally reliable on the supplements, I'm hoping they will act faster next time around. Both the insurance company and supplement provider called back to make sure the new order had arrived. Insurance lady said it bothered her all day saturday. I kind of believe her. The supplement lady just wants to safeguard her new out patient goldmine account with the hospital. Her I don't believe and don't care for much and communicated her inadequacy to the hospital dietician.

Vincente, I had zero symptoms and never felt better in my life. Was an avid runner and ate leafy green vegetables daily. I have a 17 inch neck and never even saw the lymph node enlarged. This disease if cault early before it moves to the lymph nodes has a 90 cure rate. After that it goes to 50/50. Your dentist should be your first line of defense. Ask him if he can do a screening for head and neck cancer next time your in. If not find one who dose.

 

[bubba]

Your dentist should be your first line of defense. Ask him if he can do a screening for head and neck cancer next time your in. If not find one who dose.

So happy that you are finished with the chemo. Good for you for holding strong and getting your nutritional supplements delivered. Thank you for the info about the dentist. I did not know that one's dentist should be doing a cancer screening, but I will be talking to mine the very next time I see her.

Please continue with your updates; I learn something new every time I read of your experiences.

 

[mews]

Screening - Yes, my dentist looks around when I go for a cleaning, checking the tongue, gums, and whatever else he sees ...

Takes a couple of minutes - if your dentist DOESN'T - ask why not!!!

ta,
mew