Approaching 10 years since initial dx...and "hello"

eihtak Member Posts: 1,473 Member
edited January 2021 in Anal Cancer #1

Friends (old and new)...

Its been a pretty long time since I've posted here yet still occasionally read through to stay in the know, and I suppose in a way still feel never alone in my boat! Thats such a BIG part of this support remind us we aren't alone and someone here has on some level shared the same experience and can relate better than anyone else.

Next week it'll be 10 years since I was diagnosed with Stage 3b anal cancer. After being treated with protocal chemo/radiation as well as surgery resulting in what turned out to be a permanent ostomy, I made it through! A year later I was dx with breast cancer and treated with a double mastectomy (honestly, after the pain and shock I suffered with the anal cancer, this was an easier pill to swallow at the time) Once healed I was doing well in both regards and adjusting to whatever life was at the time, and enjoying the fact that I could. A few years later a follow up scan revealed a large mass on my lung that turned out to be an anal cancer met. I had surgery (lobectomy) to remove the left lower lobe that contained the mass combined with an aggressive course of chemo. All good again, recovered, and loving life! Then, a couple years later on another follow up scan, again a small second anal met on my airway (hilum area)...this time treatment was SBRT radiation (extremely precise intense dose) This spring that will have been 3 years ago and as I write this I feel great and my most recent scan in August was good, yet I am all too aware of how quickly things can take a turn.

During my 10 year journey, my husband had been on his own, and one with even greater and harder to treat hills and valleys with Multiple Myeloma (a blood cancer) 2 transplants, multiple surgeries and radiation treatments and too many chemo regimens to even count. His most recent chemos were barely on the market and hopefully his participation will prove to help in the future. This past summer he was hospitalized several times (so hard for the family during covid with no visitation except for myself) and during one of his hospital stays in July...wait for it...our house burned down!!! It was determined electrical and a total loss, and as well as losing all the material things it held, it took his fight too!! Though it was likely unavoidable and a discussion we had visited over the summer anyhow, once discharged he had made the decision to quit all treatment and enter hospice. It was a tough time for us both between the loss of our home and these seemingly impossible health decisions, but the benefits felt, seemed to be far outweighed by the risks at this point and it was his wish to stop. We were blessed to have friends with a small house that was empty because they were fixing it up to sell or rent, but nearly done and they offered it to us to use for as long as needed. My husband was only in home hospice for a few weeks and in Setember he passed, but it was in many ways the best 3 weeks of our lives. Until we couldn't, (and then I did and he just listened) we talked non stop about life, past and present, future, family, and anything that came to mind. The kids were able to visit and all 5, spouses, and 9 grandkids showed up for a family picture...I am so grateful they made the effort and for their own sake, have good memories. Once able, I had to deal with matters of the house fire and recently bought a new small 2 bed home in town (we had been in the country) but for now have kept the property out there also (the remains of the home have been demolished). Its a nicely wooded 3 acre spot and there is a small garage that was uneffected so good storage space husband loved the area and now the kids and I love the way we feel his presence when were out there. 

Life is gradually moving forward, the usual daily things like car issues, phone issues, new house stuff, adult kid issues, grandkid visits (albeit virtual) balanced healthy eating and exercise with cheesecake and Netflix series on the couch are doing their best to enable me to say I'm doing pretty much good and at least riding the waves and holding my own for now. 

I know this was long and not so much about "anal cancer" as it was to say hello and welcome to new folks, hello and I'll never forget the people who have been so supportive to me in the past and to remind all to treasure the moments we have regardless of how small or insignificant, painful or happy they are, because our time is not infinite, yet the imprints we leave on others often lasts in ways we can never imagine. That is what I have gained here, from little tips on treating burns, how to feel okay about taking pain meds and weaning off, relieving nausea in the middle of the night, to as I said never ever feeling alone in this still sometimes taboo and hard to discuss diagnosis and feeling vibes of encouragement always!!

Thank you all (and I hope to pop in again, before the next decade)




  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    edited January 2021 #2
    Dear Katheryn,

    your post is giving me hope and certainty that human spirit is undestroyable-at least in some humans....and you are one of them.  Thank you for sharing your life story with us,it is upliflting,and I admire you.

    Virtual hug from


  • bink8
    bink8 Member Posts: 1
    edited January 2021 #3
    dear katheryn,

    Thank you for your information.  There is an abundant amount of life after treatment.  May you be blessed.

  • annie4145
    annie4145 Member Posts: 218 Member
    edited January 2021 #4
    Sorry to hear about your

    Sorry to hear about your husband, but I am glad that you are doing ok.  Your posts were helpful to me when going thru everything 2.5 year's ago now.  Best wishes



  • 7243
    7243 Member Posts: 249 Member

    You are an inspiration to me ... I too just rolled over 10 years.  Bless you and thank you for sharing your story.  ❤️

  • pializ
    pializ Member Posts: 508 Member
    edited February 2021 #6

    Hi Kathie! I am so sorry to hear of your loss of your dear husband! i can't begin to compre all your combined journey has led you to encounter. You both have had so much strength. Plus the impact this must have had on your children, their partners and grandchildren, they must also have inherited your ability to ride with the stormy waves. 
    I am glad to hear that your recent scan is all good and ? it stays that way. 
    Take care my friend, and thank you for updating us. Don't be a stranger & pop by when you can


  • Lucart
    Lucart Member Posts: 3
    edited February 2021 #7
    Hi everyone

    Hi everyone

  • technicolor
    technicolor Member Posts: 12 Member
    edited March 2021 #8

    Thank you for the  post.  It brought tears to my eyes but it is a remarkable story of strength and endurance and love!

    I had not been on here for some time but because of a call I received from someone else who has been recently diagnosed with this particular cancer I wanted to find the site so I could share it with her.  This site with all its many stories and questions and answers is just what we need during this time.  I hope it will also help this lady to see how others have been tested and endured.

    Many thanks to all who have shared their stories and helped others.

  • mp327
    mp327 Member Posts: 4,440 Member
    Hi Katheryn

    I have not been on this site for a long time either and yours was the first post I read.  Oh my goodness, I am so sorry to hear about your husband's passing.  The last time I checked in, I was aware that he was having health issues, but I am really sorry to hear that he lost his battle.  So glad you had some time to spend together discussing your life together.  And secondly, I am so sorry to hear about the loss of your home.  I just cannot imagine how traumatic that must have been, especially on top of everything else.  I am so glad that you have friends who generously offered you a place to live and that you are making all the adjustments necessary in life to cope with your losses.  I feel very bad for not checking in here for such a long time--lots going on, but certainly nothing like you've experienced.  I am so sorry and apologize for not keeping up better with you and everyone here. 

    Please know that I will be thinking of you as you begin a new chapter in your life.  I know you will handle everything just fine, as you always have in the past.  Please take good care!  Hugs!


  • Betteauroan
    Betteauroan Member Posts: 4
    edited April 2021 #10
    New to this site/Introducing myself

    Hi, I am new to this site and this is my first post. I have not met or spoken to anyone who has this type of cancer. It is such a relief to find a safe place to talk to people who have this gross type of cancer. My oncologist says this is a rare type. Mine was dx last May of stage iv squamous cell carcinoma. It spread to my liver and lymph nodes in my stomach. A new tiny one was just found near my trachea, but the liver one shrank substantially. So my last pet was kind of a mixed review. I am starting folfox and optiva on Monday. I had really bad anal pain for a few months. I couldn't stand or walk for very long at all. Keytruda put a stop to the pain, which I am ecstatic about. I feel physically very normal. I get a little pain but my dilaudid and morphine keep it at bay. My Drs have told me that this is incurable but treatable and they have no idea what my long term prognosis could be. There are no known studies going on that they know of, but they are checking into it. I am only 46 so I am terrified, quite honestly. I am a Christian and I believe that all of this is happening for a reason. My husband and I were blown away by the support we havve gotten from our community. I was able to raise enough money to pay for my final expenses and had more left over! So I did something crazy and started a non-profit. Our mission is to prepay and plan final expenses for female veterans with terminal cancer. Even though it's such a depressing topic, the response from our community has been overwhelming so far. This was started as a way to give back. A kind of pay it forward gesture. Our first big fundraiser kick off is on May 15th. I'm excited and nervous. Thank you for being here and for reading this.