Dear Friends & Family,
PLEASE bear with me and read this entire letter. So many of you have asked if there’s anything you could do, to let you know. Well, I’m asking now. I need your help – I’m asking for just a few minutes of your time –preferably on Monday – long enough to type a quick email and hit the SEND button. I also invite you to send this email to anyone you think might help. Many lives depend on it.
So many of you praise my courage, my optimism, my attitude, my strength since being diagnosed with Kidney (Renal) Cancer back in November. I send updates and try to keep things positive, but I’m now going to get to the nasty side of this disease. I belong to an RCC (Renal Cell Carcinoma) Support Group. We call this disease “the beast.” Since I’ve belonged to the group in about 3 short weeks, we’ve already had 6 people lose the fight.
I HOPE this letter will be forwarded to many people I don’t know. So briefly, I will say my cancer was discovered accidentally. I had pneumonia and my technician noticed something on the bottom of a CT Scan I had done. The next day I found my self at a specialists and a week later I had my left kidney removed, along with an 8lb tumor. The cancer metastasized to both lungs.
For those of you who know this cancer is incurable. Our best hope is containment. The drugs used to treat this cancer are affectionately referred to as life extension drugs. Two weeks ago I finished my first round of treatment – 4 weeks of an anti-cancer drug called Sutent. I’m now classified as “sutent-failed” as my body could not tolerate the drug. It’s done more harm than good (to my blood) and no new treatment can be started until my “counts” get back up there. After a visit to my oncologist on Friday – he’s giving me another two weeks – and on March 23rd, I hope to start Treatment 2. It’ll be a new drug to me, called Torisel – and I’ll receive it by IV – every Friday – no break in treatment. As long as it’s tolerated and if it works (CT Scans will be repeated after I can be on a singular treatment for 3 consecutive months) then I’ll receive the IV’s every Friday indefinitely. Not something most people would look forward to, but if it does the job, I take it with a smile!
During my first treatment, when I wasn’t at work I was pretty much home sleeping; the fatigue level is indescribable. In the first two weeks especially, I’d spend hours at night (I timed the medicine so I could go to work and not be sick till night) bent over the toilet bowl – throwing up virtually anything I ate. This would sometimes last for hours. This tapered off during weeks 3 and 4 – to only a couple of times a week. I never went more than 2 days without actually getting “sick” – but the nausea is something that is always with me. The sores in my mouth got so bad I could only eat soft foods (including baby food)….. pureed soups, applesauce, puddings, etc….. I had to be talked into eating, because my appetite was gone as were my taste buds. It was easier for me not to eat, than to eat. I had nosebleeds from the sores in my nose. My hands felt like they were steam burned. I would start with red raw patches that would eventually harden and split open. Those can also happen on your feet although I didn’t experience it as bad My eyes started swelling right before I was taken off the meds. My skin is as dry as the desert and nothing seems to help. My hair has thinned noticeably and I think it’s pretty much stopped growing. With the tumors in my lungs – they’re irritated and inflamed, so I’m not able to rid myself of the asthmatic symptoms I’ve had since the pneumonia. I’m on a nebulizer (portable breathing machine 4 times a day). I was coughing so bad 3 weeks ago that my incision actually split in 3 places – and two of those got infected. With this beast, my doctor qualified me for a handicapped parking permit – he listed me as permanently disabled.
I’m not niave – I know how serious this cancer is. But I am optimistic! Wednesday, March 13th, is National Kidney Day. Please visit this site – it’s being supported by numerous Hollywood Stars. http://tinyurl.com/2yc55e (copy & paste into your browser)
My RCC group is on a mission – we’re too late for this year – and I’m convinced it’s because I haven’t gotten involved yet (you can smile, here – because it’s you’re help that I’m counting on to make the difference.) It’s now my mission. And I’d like nothing better than report to you all next year, that we accomplished this. If not – plan to hear from me next year as well.
World Kidney Day was just started in 2006. In the US, on March 13, the American Society of Nephrology and the National Kidney Foundation is lobbying in Washington DC. Doctors and patients will meet elected officials to talk about and raise awareness of Chronic Kidney Disease – including RCC.
Our mission is to make MARCH – National Kidney Awareness MONTH.
I have 2 wishes! One short term - I wish to live long enough to see March declared National Kidney Month. And my second wish – if that happens that maybe in my lifetime we’ll find a cure.
When I got diagnosed and started doing my research – nearly anything you put in Google about cancer – unless you specified kidney caner – practically every website relates to Breast Cancer. Look anywhere and all you see are pink ribbons. Not to negate anything from that cancer – but I would like to do for Kidney Cancer what so many people have done for breast cancer. Women do get other kinds of cancer!
With my personal family and friends, and a force and a family like Keller Williams (the company I work for) behind me – I feel like we could make a difference. Wouldn’t that be wonderful.
All I’m asking is to write your Congressman and ask them to support H. Res. 123 – to bring Kidney Cancer Awareness to the forefront, to the National Level – so funding can be obtained for Research for a Cure!
The following link is to Congressman Cliff Stearn’s home page. He’s the Florida Rep on the Energy and Commerce Committee. 100 co-sponors are required to get this resolution to the floor for a vote – 19 of whom have to be from the E&C Committee. Please consider emailing him, along with the governor and any other congressmen you want to copy your letter to.
www.house.gov/stearns/ (Cliff Stearn’s homepage)
http://www.flgov.com/contact_form (Charlie Christ’s Office)
They ask not for “cookie cutter” letters. So if you could just make it a bit personal, saying this cancer has touched your life (and perhaps for many of you it has – with someone besides myself), feel free to use my name. I applaud a member of my group, who got the Gov of ILL. to declare March Kidney Cancer Awareness Month for the state of Ill. It’s a start! So way to go, Linda Cox!
I want to thank you all in advance. And to anyone who writes a letter and emails me a copy – I will do a drawing from those letters, and will send gift certificates to a few people. I can’t do much, but it’s a small way I can show my heartfelt appreciation.
Continuing the Fight! I may have cancer – but it doesn’t have me!
With Sincerest Thanks,
Donna Jones
I figured since I am not that busy and I have lots of time to spare I would take up something else to fill all the empty time. Actually, it was more like, I was asked to play on the church's softball team and I just couldn't turn the offer down so now I have another thing on my plate. I started playing softball when I was 7 and I played up to highschool when I played on the school team and then got a job and a boyfriend (Peter) and quit. I have always missed playing and I was asked to play on the Police Department's team but they play on a night I have school so that didn't work. Today was the first practice for the church team and I haven't played in years so I didn't expect too much out of myself. I actually, did much better than I expected but I know I will be sore tomorrow. Our first game is on Saturday so I will try and have Peter take a picture or two of me in action.
