Ruth's Cancer Blog

2 years out

Hi all,
Long time, no post. but I do follow you all almost daily, so I am there. I just don’t really have much to report.

Dec. 28, 2009 was my last day of radiation treatment. I am now over 2 years post txt, which is great. I saw my med onc last Friday for a 6 month check in. She said all my blood work looked great, but my white count was still low (I believe it was a 2.7). She said that makes sense since the radiation is to my pelvis, and the blood manufacturing is slowed down due to treatment. It may never get back to “normal”. But since overall I’ve been healthy (barely a sniffle in the past year), that my body seems to be coping well with the lower count.

She also said that I won’t have any more CT scans of my chest since the nodule they were monitoring has not changed AT ALL in the 2+ years of testing. The radiologist did not recommend anything further. I was glad to hear that since I really dislike all the testing radiation, knowing how much I’ve already had.

I have a fairly open medical schedule for the next couple months. I see my surgeon in late April, will have an MRI in May, see my onc/gyn in May, and I think that is it for now. Oh.. and I am having an ultrasound of my liver just for caution’s sake. My doc said no one has looked at my liver so maybe its time for a look-see. I told her, sure! I’ll do what I’m told and I’m glad no radiation is involved.

So now I suppose I should get on with life, right? Why do I sometimes feel that we’re just waiting for the other shoe to drop? I worry now about every weird little feeling I get. Is it the cancer coming back? I make myself crazy.

Question for those with AC: should I expect all the muscles in my girl parts to keep tightening and shrinking? I really hate reading “vaginal stenosis” on my medical reports. Can’t we just block that out so the world doesn’t have to read it? “See her? She’s got VS”. seriously. And I really am wondering about this. My last visit with my onc/gyn (and sorry for TMI here) revealed that the speculum couldn’t be inserted as far. hmm… my incredible shrinking vagina.

And another note… when the med asst took my height, she then asked me how tall I am. I said 5’8”. She said I measured 5’ 7.5”! Did I shrink .5” already??? I’ve only been off the hormones since August!

So I am puzzled, somewhat alarmed, and also concerned about what may continue to happen to my body as time goes on. I think about bone loss, weight gain, night sweats (ugh!). So not fun.

On a positive note, I signed myself up for a “training challenge” at our gym and have been working with a trainer 1 day/week since the New Year. I’ll find out next week if I’ve gained any muscle since that was my goal.

And as another weird cancer thing, one of the trainers, when watching me do one of the exercises, pointed out that my body is tilting left or right as if I have instability in my hips. LIGHT FLASH! yes, I DO have instability in my hips, thank you CANCER, you F-er! I find all exercises that require leg strength and balance (lunges off a set, single leg dead lifts, etc) are very hard! Will that get better? I wanted to work on my hip strength and flexibility since I know its a problem area.

Anyway, 2 years and I should be celebrating. And I am. But I’m still cautious. I think once you hear that word, how can you be anything but? Wishing all my fellow bloggers good health and a great day!

Posted on February 15, 2012 at 11:10:15 AM by Ruth (2 years out, 18 comments, 893 views)

Hi Ruth,

Happy 2nd anniversary! Sounds like you’re doing great and I hope you continue to improve.

I’m now almost 10 months post treatment and like you, experience the hip instability. Despite lots of stretching, I’ve lost about 60% of my flexibility..can barely give myself a pedicure. My right groin (which had the heavy lymph node involvement) is always sore. My right side is not as strong and when I do lunges on that side I usually topple.

I am now just getting ready for a few Gatorade/Miralax cocktails (about a gallon) for a dreaded sigmoidoscopy tomorrow. :-o

Mari

Posted on February 15, 2012 at 11:22:24 AM by Private User

Good luck tomorrow. Blech that stuff is God awful.

And YES, the hip stuff is crazy. I also have a hard time with the pedi! Its terrible! I keep wondering if this will improve slowly or if this IS IT for the rest of my life?? I certainly love having someone else give me a pedi, BUT really??? What if I just need a trim? I can’t bend my leg! And I was ALWAYS very flexible so this is frustrating. :(

again, best wishes for your test. and have a nice ice cream after. Always makes me feel better. hugs!

Posted on February 15, 2012 at 11:26:08 AM by Ruth

Thoughts on Cancer Awareness Month

Hi all,
I’ve been reading your blogs with interest regarding the Pinking of October. Many have expressed concern that its seems only breast cancer gets recognition and there are so many other cancers, all determined to kill their victims if given the chance. I hear you. As a rare cancer survivor, I have seen the reaction of well meaning folks who would ask “what cancer do you have? breast cancer?” My answer was “no, anal cancer.” Then the shocked look and response “oh”.

Oh, indeed.

I think our culture has come a long way in accepting breast cancer as a enemy that needs to be confronted head on… not one that is silently dealt with by doctors and the patient. Do a google search for Betty Ford and breast cancer and you’ll find she was an unwitting advocate for this disease, giving it a face for the first time in a public arena. My mother told me that before Betty Ford, NO ONE talked about breast cancer in public, as if it was something to be ashamed of. Whispers at ladies’ gatherings “you know, she has cancer”.

Seriously. My own grandmother (who lived to be 95 and died of heart failure) was TERRIFIED of cancer. I am sure this is due to the stigma that ALL cancers had in her generation. Imagine her reaction today to see a t-shirt glibly saying “Save the Ta-ta’s”. (I saw one of those in Vegas and had a good chuckle…over CANCER! Imagine that?)

I guess my point is that even breast cancer, which now gets walks and pink feather boas, was once an impolite subject in polite company.

Changing ideals in changing times always. Our lovely 7 year old boy will celebrate an important date in the next 2 weeks. 5 years since his last open heart surgery to correct a severe and rare heart defect present at his birth. 4 open heart surgeries before age 3. Amazing doctors and surgeons saved his life.

And my point? Back in 1944, a group of brave surgeons and cardiologists at Johns Hopkins University Hospital performed the first pediatric cardiac surgery to save a “blue baby.” In 1944, if your child was born with a severe birth defect of any kind, no surgery was done to correct it. It was “God’s will” that your child was born this way and should also die as a result. “God’s Will.” There was no neonatal intensive care unit, no pediatric surgeons, and certainly no pediatric CARDIAC surgeons.

there is a great HBO movie that recreates this historic surgery. “Something The Lord Made.” Fabulous. I wept when the baby survived and then pinked up as a result of her corrected circulation.

But these surgeons defied this cultural opinion and went ahead, even facing protests from religious leaders that they were defying God by tampering with a human heart.

And here we are today with those surgeries considered part of ROUTINE TREATMENT for our son’s defect and many other severe defects like his. Treatment is still full of risk and very scary, but these surgeries are performed all over the country and the world routinely today.

Changing times and changing opinions.

I like to think that we are very close to a time when ALL CANCERS will be placed in the same genre of diseases that MUST BE CURED.

And while I do think that groups like Komen who encourage other greedy companies to make donations through purchases (you know what I’m refering to), at least raise awareness and get the word CANCER out there in the population. I think there are many people who would NEVER donate to ANY charity directly, but at least they are hearing the word “cancer” repeated over and over and it may help to take a little of the negative emotional power that word has, away from it…just a little. At least I can HOPE that is what is happening.

I DO

Wishing you all a happy Cancer AWARENESS Month (there! I just renamed it!).

Hi Ruth. A very strong statement. Thanks.

I believe that one of the impediments to understanding and preventing cancer in our culture is the environmental dimension. Think how hard it was to get the fight against smoking underway, how powerful that industry is. Decades went by while even cancer organizations tried to focus on making cigarettes safer rather than trying to get people to stop smoking! We live now in a sea of chemicals that human bodies never experienced before the industrial chemical age. We cannot know that they are safe. Some, such as benzene, we absolutely know are not. But most are completely unregulated; the industries are powerful and have the money to prevent any real oversight, despite all the rhetoric about excess regulation. Each of us has to do our individual best to live healthy lives, especially after treatment – but it’s not easy to avoid carcinogens!

Being upfront and telling people about your cancer is very important. Thank you for doing it. I remember Betty Ford’s “coming out” (tells you how old I am!) and how important that was. We have to speak up and out!

XOXO

Posted on October 10, 2011 at 8:57:54 AM by Private User