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Vital Info


Lori (whyanyone)


April 10, 2009


Phoenix, Arizona


December 31,1969

Cancer Info


Anal Cancer


SCC


May 22,2008


Stage 1


02


Grade 1


No


yes


Don't get me started


Seriously..I hate to give cancer credit for anything. I lost my mother to it. We have lost friends and family. From loss I learned to appreciate every day. I knew that way before I got cancer. So I am loathe to comment on this. I am just not one of those cancer is a gift people.


Donate donate donate...Even if it is one dollar. Support this cancer blog and the ACS


Hmmm...well the treatment does kill the cells..so that is good. The side effects are certainly not pleasant.


Stay in the moment..trite but true.


Not a one. No symptoms.

No surgery as cancer was Stage 1.

30 treatments from 6-23-2008 through August 4, 2008
Burning, blistering..think Iwo Jima





Biography

“The World is full of People who will go Their whole Lives and not actually Live one day. She did not intend on being one of them” (a quote found on Curly Girl card)

A cautious optimist by nature I have always known that anything can happen to anyone. I was diagnosed with anal cancer just before my 50th birthday. No symptoms but went in for a colonscopy. This was my third one as my maternal uncle had colon cancer at age 50 so I have always been catious….Um oh yeah real cautious. I am also BRCA1 positive as my mother had breast cancer at age 46 and sister at age 34. So after having genetic testing at the age of 44 and coming back with a positive BRCA 1 test I did what any normal somewhat now fear driven woman would do. I underwent a hysterectomy and bilateral prophylectic mastectomy with reconstruction. Uh huh I did…and never looked back. I was back to work in 11 days …because I felt good enough to do so …those were the days!

So I then went on my merry way of life knowing that I probably would not get breast cancer or ovarian cancer. But anal cancer??? Come on??? What??? Huh???I never had so much as a yeast infection?? Just shoot me now I thought!

Well…here I am 9 months out of chemo and radiation. What a sleigh ride….........You know it is not so much having cancer it is getting through it and living with it. It is very tough…not for the feint of heart.

This blog I came upon right after I was diagnosed. I did not post on it as I was so shellshocked I just couldn’t. but it was so helpful. I was amazed at how everyone could pour out their hearts. It really helped me so much. Now I will post so others know they will get through this. I am not sure whatI can say that has not been said. But if anyone is in Arizona that wants to get in touch with me or needs any information, I can say that I am very educated about this cancer and continue to learn more all the time. I will do anything to help you. Send me a message via this site and I will contact you.

Thanks to all of you who have posted and offer such kind words of support. We must continue to educate people about this cancer.

Cancer Symptoms

Not a one. No symptoms.

Surgery Description, Dates & Side Effects

No surgery as cancer was Stage 1.

Radiation Description, Dates & Side Effects

30 treatments from 6-23-2008 through August 4, 2008
Burning, blistering..think Iwo Jima

Chemotherapy Description, Dates & Side Effects

June 23 to August 4. Two rounds of Mitomycin C and 5FU( I know why they call it that!!)......Fatigue, mouth sores, loss of all hair.




Comments:

Just to comment – I had no symptoms at all either, just felt something odd inside the anal opening and why I probed there I don’t know. My primary care physician had shifted me from annual OB/GYN visits to just getting mammograms – and she did not do physical exams = on the grounds that I never had a bad Pap smear. So no HPV test, no DRE, nada. Maybe it would have been found earlier..or maybe not. Life seems to be pretty random.

Thank you for your note of support….I have to say sometimes I ask myself what did I do wrong but that is a meaningless question…you just have to figure out how to make the most of the life we have.

Going to support the new effort to establish an anal cancer foundation. Time to get this one out of the shame and shadows.

Be well.

Hi Lori,
I just wanted to drop a note and say Hi. I just saw your post on my Blog. I don’t look at my own very often! I appreciate you good wishes and also hope things are going well for you. I do not get to Phoenix very often but would love to make may way up there sometime. Take care and
all the best to you!
Hugs
Anna

Thanks Lori for the post on my blog. I know you have compassion and God watches over the special people. I’ll pray for you too and hugs from FL. I heard the cancer I might have is a “silent killer”. I want to go on record that we should call it “ninja” cancer. It sneaks in the dark and kills with no warning. No fight, no heads up. Like an arrow traveling from the dark into your soul. My attitude is to turn on the lights and beat the crap out of anything that creeps in the dark. Sorry for the rant, but I have been doing the right things all my life and I want a fight. God bless you! Cheers and peace!

Hi Lori,
Wow, thank you for that powerful post in response to my blog. I love that we are all speaking out and being honest. You are so right .. the no BS is a biggie! Like you said, when you’ve kind of almost lost everything there is not longer any fear and we can be so honest and truthful. I find that what I’ve done is let go of relationships that don’t serve me so I don’t have to be around the BS and if I do (like with family or running into people in my small town)...I am honest with my feelings without reacting or taking it….just stating them. People are always surprised with that and they drop the BS immediately. At the same time, I try to have compassion because “lord, forgive them they do not know what they do.” or something like that I remember from catholic school days. I quote Tantric philosopher Douglas Brooks “You are as good as the company you keep, so keep great company!” Thanks for your post, Nova

Hi Lori—
Here’s hoping that your curls are only temporary! I will pray for no more brillo pad hair for you! There must be a prayer for that, right? LOL!

Love—
Martha

Thanks Lori,

I really need all the encouragement I can get. I am such a worrier that sometimes I just don’t think it is my luck that I will get to remain here. I hope I am wrong. I have so much to live for just like all of us. When I see survivors like you it gives me such hope….That is what I hang on to. Thank you for all your inspiration!

love

Nancy

Hi Lori—
Thanks for your comments on my kitties! I knew you would enjoy seeing how sweet they are.

I just wanted to say that I, too, will miss Kathy B. very much. She was a real inspiration to me when I first joined BFAC and she seemed like an incredibly strong person. But as we both know, sometimes the cancer just wins, period. My heart goes out to her family. I hope you will continue to be optimistic, as our outcomes will not mirror hers or Farrah’s. I think we’re both going to make it just fine! Take care.

Hugs—
Martha

Thank you so much for the beautiful words you put on my page! You are such a kind person. I am very sorry you were sick and I hope that you have over come the cancer. I love the picture you have posted. I a have always been nice to people around me as well but have always been a bit hard on my husband. But I am working on everything. Life has been hard but I am trying and all we can do is try.

I wish you the very best always and always be a fighter! Smile always no matter how hard it is. I know it is very hard for me to be happy but I wish for you to be happy! Let the sunshine warm your face and keep you warm. Run around and be happy…. I know it all sounds crazy but be happy….

Hi Lori, That TSH number does sound normal but you do have to look at the T3 and T4 numbers also. You are right about adrenal fatigue….are you taking any magnesium supplements? I think a good homeopath will head you in the right direction. We can’t really self diagnoise with this treatment. I know I had up and down periods for a long time … just when I thought I was doing better, I’d feel worse again .. back and forth. I thought I was doing pretty well but like I said aroudn 21/2 years I suddenly felt super fantastic…they same with 3 other women I know. And now at 3 years even better than that. I’m stronger than ever, have more energy than ever.

On top of working out, you also need to do some deep relaxation. Hot salt baths, legs up the wall, oil yourself….anything that nourishes you.

Hope you find an alternative doc and let me know how it goes.
many blessings,
nova

Lori,

Thanks for the simple, yet meaningful advice to “Breathe” and your prayers. The opening of your biography reminds me of one of my favorite lines from the movie Braveheart, “Every man dies, but not every man really lives.” I like your spirit and attitude…“So anyway as of this day which is all anyone has …it’s good and I am grateful…no matter what!”, and I detect a unique style of humor, “What a sleigh ride”, “Don’t get me started” and “I am just not one of those cancer is a gift people.” Thanks for posting on my blog Lori.

Lori—
Thanks for your update. I’m so glad to hear you are doing well, despite the fatigue, and that you have celebrated 1 year out of tx! I wish you all the very best and hope that you will update occasionally as time allows. It’s great hearing from you! Take care.

Martha

Lori—
Thank you so very much for your support of my friend Ed. The prayers obviously worked and meant so very much to me on his behalf. Thank you!

Martha

Lori—
Congratulations on your good news—that’s wonderful! I’m so happy for you and I know you are breathing a sigh of relief. Thanks for support—I appreciate it so very much! I am looking forward to the race tomorrow—not looking forward to getting up at 4 a.m.—but looking forward to the race! I will post a report and pics as soon as I can! Have a great 4th!

Martha

Lori—
Thanks for your response to my recent comments. I appreciate your support so very much! I am sorry to hear that you are having some forgetfulness associated with the chemo. I know that must be terribly frustrating, as I, too, experience that sometimes. I like to blame it on the chemo and not the fact that I’m just getting older! :) I hope your oncologist can give you some answers about that. As for the bone issues, I’m really not surprised that I may have insufficiency fractures. I’m very small-boned to begin with, then add the fact that I’ve had all this radiation to my pelvis and that’s a recipe for just this type of fracture. I had a bone density test which showed osteopenia, but my gyn did not prescribe anything for me. I am hopeful that the endocrinologist will be more helpful. I can certainly relate to the stiffness you also experience. My hips get so stiff sometimes after I’ve been sitting for awhile—I get up like an old woman! And I definitely can’t sit cross-legged like I used to either. I’ll definitely let you know what I find out from the doctor that may be of benefit to you as well.

It is heavy on my mind that cancer could strike again at any time. I’m trying to be very vigilent in my efforts to rule out any potential problems. If something comes up, I want to deal with it as soon as possible. I think at this point, that’s all any of us can do. Please let me know what you find out after you see your oncologist, and I’ll let you know how my appts. later today go (it’s 2 a.m. right now—I can’t sleep—another gift of cancer!).

Martha

Thanks Lori for letting me know that things will get back to normal. I would like them to be normal now (haha wouldn’t we all). This is the biggest nightmare I have ever gone through and I really hope that I never have to deal with it again. I am glad you are doing good. I can’t wait to go back to work. My boss has been awsome. He has paid me through the 3 1/2 months I have been off already and told me that I do not have to use my vacation time. There are wonderful people in the world more than I knew before cancer.

Anyway I will keep you in my thoughts and prayers and I hope everything continues to go well for you. Keep in touch through the website I would like to hear about your follow ups.

Take care

Nancy

Hi Lori—
Thanks for your most recent comment to my blog. I’m glad you found the UCSF website informative. Of all the ones I’ve checked out, I think that one has the best information.

My med onc and rad onc disagreed as to when to do my first post-tx PET scan. Med onc insisted I have it done 1 month post-tx, as he wanted to make sure there were no liver or lung mets. Rad onc wanted to wait. I went ahead and had it at 1 month—all was clear except for activity at the tumor site, which was thought to be radiation activity. Subsequent PET’s have shown no activity anywhere. I am scheduled for my next PET on June 11th. I am a little concerned about it only because I have recently had some fatigue, chest tightness and labored breathing. However, I recently had a cold, which has not completely resolved, so I’m hoping it’s all related to that. I will soon find out. I see my med onc on the 16th. to discuss the findings of the PET. Other than the above, I am doing very well.

Yes, I follow the HPV website as well as Rare Cancer Alliance (if you haven’t checked that one out, please do, as there is a group specifically for anal cancer). I have learned so much on all of these websites and it is great support.

I love the kitty picture on your blog. I’m a cat person too—I have two tabbies, a brown female and yellow male. They are my “kids.” Take care and keep in touch.

Martha

Lori—
Thank you for your comment on my blog. I am glad to know that you are doing well, and I hope that continues to be the case. I am feeling good, despite some low energy levels recently. I hope that is not an indication of anything bad.

I really think we all need to play a role in educating people about this cancer. It’s a hideous disease that few people have much information about—it’s time to bring it to the forefront!

Thanks for asking about me. I hope you will continue to let me know how you are doing. Take care.

Martha

Lori—
I just came across your blog while looking at all the other anal cancer bloggers on this site. I’m sorry I have missed yours up to this point and I am sorry that you have the occasion to join this group, as it’s never one we want to qualify for. However, I too, was diagnosed with anal cancer last year—6/18/08 to be exact. I had had symptoms just prior to that of bleeding, and symptoms way before that of bloating, constipation, a feeling of never getting completely emptied out after a BM, and painful BM’s. Thank God I finally bled, or I might still be putting up with all the other symptoms, unaware that I had cancer. My first appt. to have things checked out was with my internist, who quickly diagnosed me with bleeding hemorrhoids—ya, the old bleeding hemorrhoids dx. However, she did give me a referral to a colorectal doc for my overdue colonoscopy, who did anoscopy on my consult visit and told me that very day that I had cancer, even before biopsy. She was right, as I had colonoscopy 2 days later with the bad news the following week from the lab. I began chemo/rad—the same protocol you had—on July 28, 2008 and finished on Sept. 9th. I am now 8 months post-treatment and have resumed normal life, except for a few hiccups now and then—you know, the sudden bouts with diarrhea when you’ve eaten the wrong thing, the radiation proctitis, and stiffness in my hips. I lost some of my hair, but not all, and it is almost all grown back in. I am on the 3-month follow-up merry-go-round, with PET scan, med onc visit and colonoscopy coming up in June. So far, the news has all been good and I am hopeful that that continues. My emotions are still unpredictable and I am dreading the flood of tears that will come tomorrow evening, as I watch Farrah’s story. However, I am so glad she is brave enough to tell it, as I think it will get people’s attention and bring more awareness to this terrible disease.

I hope you are doing well. I’m sorry for all that you have endured, both with the anal cancer and prior to, but you sound like a very strong person and I am in awe! What an inspiration.

Please feel free to contact me anytime through the blog—I would really welcome an update from you as to how you are doing, coping, etc. We all need each other in this fight! Take care.

Martha



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