Ok, now I'm ticked!

[DeanCarl]

My life's history shows that I have an absolute genius for somehow ending up in the screwiest, most complicated situations like you WOULDN'T believe.

An example: As a teenager in the late 60's I bought a car. I got a used (1964) Volkswagon Beatle. I wanted something easy to maintain and work on. One day the thing started knockin' and shakin' and smokin' and whatall. No problem, right? That's why I got the car. So, pulled the engine (a very easy job on the beatle) and found what was wrong and ordered the parts. New parts came in ... and didn't fit! Found out I had one of only 500 1964 beatles built with the 40 horse power Karman Ghia engine in it instead of the normal 36 horse power regular beatle engine. Took WEEKS to get the parts and get the thing back together.

So, what does this have to do with my cancer? Just this. I went to see the onc today. Appointment time was 10am. Got to see him at 12pm! Thought I was FINALLY gonna get treatment started. Operatave word here being "thought". Turns out my cancer (squamas cell carcinoma, stage 3a) is right on the dividing line between being operatable and non-operatable! And the folks at the VA are having a dilly of a time trying to decide which way to go with it. PLUS ... my bone scan came back with a "hot" spot on one of my ribs which MAY be cancer or MAY be something else. (the doc said it could be from an old break ... except I've never broken a bone in my body except my fingers!). Had rib x-rays taken and now it's back to the Heart/Lung clinic next Wednesday to se the CT surgon. I'm beginning to feel like a ping-pong ball. I finaly blew up at them today. Told them if they kept messing around this stuff would grow and metastisize more and solve their damn problem for them. I also told them I was getting a bit tired of over a months worth of "Maybe's", "possiblies" and "We thinks". I think my outburst got their attention though. When I got home there was a message on the answering machine from CT surgery apologizing for the mixup. I also talked to the social worker and she asked what could be done better (which, being the non-shy type, I told her ).

The one good thing that came out of today was someone in authority (i.e. a doctor) finaly said I was disabled and that allowed me to apply for assistance.

So the waiting game continues.

(thanks for listening. I feel MUCH better! )

[Don Wood]

Sorry you got the run-around. Sounds like things are on track now. Best to you. Don

[Fay A.]

DeanCarl,

You are one week away from it being 2 MONTHS since diagnosis, and if I remember correctly you are going to the VA hospital?

It is my opinion that anyone whose care is affiliated in any way with the military medical community, or VA can count on extended delays in diagnosis and treatment, not because they CAN'T do these things, but because the DON'T do these things...until late bordering on end stage lung cancer. I base this opinion on personal experience as well as that of having read of and knowing many people who were done as you have been, including my own Mother.

You might want to write you Congressional Representative with a copy going to Congresswoman Lois Capps. She is very attuned to the consequences in delaying diagnosis and treatment in Lung Cancer patients, as her 36 year old daughter, Lisa, was not diagnosed until late stage, and she died. Nothing like a call from a Congresswoman to light a fire under anyone working for the Federal Government.

Fay A.

[Fay A.]

Ps to my above post....let me know if you want her number and address. She's the Congresswoman from Santa Barbara, CA.

Fay A.

[bobmc]

Hello Dean;

I think Fay's given you some good advice there!! I was dx' ed squamous cell, stage IIB and had a pneumonectomy 3 weeks after I was diagnosed. I realize were all not the same but 2 months is entirely to long.

I think that was a very good thing you did by blowing up at them. You know the squeaky wheel gets the grease. My advise is squeak very loudly some more.

I'm not a doc, but do know that squamous cell is a slower growing cancer and that you should be a prime candidate for surgery and this is the best chance for a cure.

my best to ya Dean and please let us know how you make out.

God bless and be well

Bobmc- NSCLC- STAGE iib- left pneumonectomy - 5/2/01

" absolutely insist on enjoying life today!"

[DeanCarl]

Thanks folks. I'm feeling better about the whole thing now. Though I'm not gonna let up on the VA people I do have to admit it has been a combination of factors that have delayed the start of my treatment, not JUST the VA.

First off the VA had nothing to do with the fact that the original appointments were made for during the week that San Diego decided to burn. Since I live in one of the areas that got hit pretty hard I had to cancel those two appointments. The other thing the VA isn't responsible is my lack of strengh and stamina. I just can't do two or three appointments in one day, running from one end of the hospital to the other. And the trip down there is over an hour to begin with so I'm usualy pretty tired by the time I get there. I lost a couple of weeks due to those factors.

The one thing the VA IS responsible, in my opinion, is NOT getting enough information to the patient (at least in my case). I ran into a situation where I had to decide which appointment was the most important (the early one was running very late) and made my decision based on what I thought was the most important. Turned out I was wrong and that set me back a few days also due to the way the VA runs it's clinics for it's various departments (I'm involved with four different departments. Pulminary, Hemo-oncology, Radio-oncology and Heart/Lung surgery). But I made the best decision based on the information I had. So that's gonna be the big push for me from now on. I want ALL the information each of the four departments. Yes, I do have a "primary" doctor, but due to the fact I got registered there and went through the urgent care the same day I kinda by passed him and have yet to meet him. I have talked with him on the phone and he is following my case through the VA's computer system (one of the bright spots in all this) and I WILL be seeing him in a short while.

I guess the "learning experience" of this last week has been that *I* have to be the one to take control here. I'm sure many of you learned that lesson also. I'm a "take charge" person anyway so now that I'm over the shock of the original diagnosis that shouldn't be too hard for me.

Two more appointments next week (Tuesday with radio-oncology. Wednesday with Heart/Lung surgery) and I WILL get ALL the information they've gathered. I should then be ready to make a decision about what *I* want to do about MY cancer.

Dean

[Don Wood]

Hang in there, Dean! Yes, we have learned that we have to take charge of our own health and do the directing. Also, each patient needs an advocate to run interference for the patient when the patient is down and can't fight for themselves. Sounds like you have a good handle on it now, and I wish you all the best. Don

[teresag]

Dean, is someone accompanying you on your trips to the VA? Maybe you know someone who could come along with you. If you're going alone, you would get tired after driving that long. Have you considered using a wheelchair to get from place to place while you're there? That way you could still combine appointments, make fewer trips, and still have the strength to complete the day.

Best of luck to you, Teresa

[Fay A.]

Another thing to think about is supplemental oxygen. I could't believe how fatigued I was for months and months before my lung was removed in May. For a while the supplemental oxygen made the difference between me being able to get around on my own steam and having to depend upon others to help me get around. Don't know what your PFTs show, so if you're already on O2 just disregard this.

One other thing....the VA should have someone who can assist you in making it from one section of the hospital to another. Please contact their patient advocate or patient affairs office and speak to them about this. You've earned their best attentions. You've already paid your dues. You're a Veteran.

[lilyjohn]

Hi everyone I have been out for a while with computer problems. I have seen the congress woman from Santa Barbara mentioned several times here and on another message board. I would like to know the story of her daughters illness. I am still gathering information. Someday I may be able to start that site I want but for now I am too busy making a living and dealing with one year aniversaries. Please let me know about her. I still hope someday I can get someone to help me fight for Johnny's rights that he was denied. The only way to do that now id for someone to be cited for what they did. Until then I hang in and just gather information any where I can. I wish you all the best and please don't let any doctor or nurse discourage you.They are not God and sometimess I think they just want to move on to someone else so they get you down so you will give up. Don't give in to them fight with all you have it is your life not theirs. Lillian

[dadstimeon]

Hi Dean,

Have you asked the doctors for something to combat your fatigue? That’s my main complained also. Extremely (for 18 months) fatigued and tired. After trying several medications, which made it worse, I finally hit the jackpot with (trying it for the second time, don’t know why it did not work the first time) Ritalin. I take 30 MG twice a day. I’m not going to be able to do cartwheels down the street mind you, but It allows me to a least feel less fatigued and tired and able to function better. But still need my naps. Take care and God Bless.

Rich

My 2-cents in battling cancer: Stay poitive and focused. Never give up, never give in. Take one-step and one day at a time. Enjoy life to it’s fullest. Lots of laughing and yes even crying. It rejuvenates the body.