Been too long since I've said "hello"
Oh my goodness...I can't believe its been months since I've posted here. I see so many (too many) new members and just wish this place was not so needed, but thank God it is here as it has been for me and so many others such a life line at times. I pray the New Year brings us all an abundance of health and healing together.
I was initially dx with Stage 3b anal cancer almost 9 years ago now. I do have a permanent ostomy (that quickly became easily managed) and was treated with protocal chemo/radiation in 2011. In 2012 I was dx with a rare unrelated breast cancer and had a double mastectomy. In 2015 a recurrance of anal cancer that had metastasized to my lung was treated with surgery to remove the lobe in which it was contained followed by an aggressive course of chemo. Feeling great, doing fine and loving my life and family (as well as going back to college in my mid 50's) brought me to 2018 when a follow-up scan revealed yet another anal cancer met to my hilum(the airway connected to the lung)...treatment was a precise targeted radiation. Aside from a dry chronic cough and what I imagine to be some stenosis in my throat, I again am feeling great. (Well, I live in Wisconsin and we are buried in snow so I am sore from shoveling and my one arm says I over did it recently) but other than that, I'm good.
Sure, over the years there have been some ups and downs some related to cancer and its treatment and some not. I so hope all the members from years past are managing as well, as we have no choice but to "keep moving forward" really, and for the new folks, you'll too have some hills to climb on this journey, but don't despair, eventually you'll get there too. I remember thinking I'd never feel good again (a few times, lol) but our bodies have been hit hard by both this disease and its treatment, and you'll need patience, lots of patience. In time, you'll be looking back also and go ahead and give yourself a hardy pat on the shoulder for hanging on.
Some of you know that my husband has been riding this train with me on his journey with Multiple Myeloma (blood cancer). He was initially dx in 2010 and too has had several recurrances. He has had transplants, chemo, surgery, radiation, more than his fair share over the years and and is struggling through once again. Over the holidays he caught such a bad cold that they had to alter his chemo schedule but should start up again next week. Hes a strong man, but he keeps saying hes just sick of being sick...please keep him in your prayers.
Well...anyone who read this whole long post, gosh, I'm impressed! Know that I'm thinking of you all and wishing you so much goodness to come.
katheryn
Comments
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same diagnosis
Hi,
I finished treatment on Sept 11 and got my 156 week MRI results yesterday. No active tumour left but 2 mesoractal nodes have not disappeard but shrunk to half their size. I'm meeting the doctor on Jan 7. I am hoping for other options before being told I have to havea the APR. Did you have any other options nefore the operation. I'm afraid of the colostomy and all that it entails.
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Hoping2bcured...Hoping2bcured said:same diagnosis
Hi,
I finished treatment on Sept 11 and got my 156 week MRI results yesterday. No active tumour left but 2 mesoractal nodes have not disappeard but shrunk to half their size. I'm meeting the doctor on Jan 7. I am hoping for other options before being told I have to havea the APR. Did you have any other options nefore the operation. I'm afraid of the colostomy and all that it entails.
Hi,
I am sorry you are facing all this...
My situation was a bit different. Because of size and location of my anal tumor, my doctor suggested a colostomy prior to even starting my chemo/rad treatment. There are several different types of ostomies and mine is called a loop ostomy which is most often done when there is a chance of reversal in the future. There was never a guarantee, but I was hopeful at the time, and, on the plus side, though an adjustment, I did not suffer with some of the painful bowel movements that others do during treatment. After the fact though, the radiation had caused enough damage to make a successful reversal unlikely and by then I had adjusted to life with such anyhow. Am I thrilled, no, but I am alive, and still do not suffer with those bathroom issues that so many post about. Yes, it takes some time to get used to, but it wasn't long before I learned the ropes, and if need be you will too. I joined an ostomy support group in my town that now I only rarely go to, but in the beginning they were a wealth of help. There was so much I learned. Like all the different manufacturers, supplies, ect. I will tell you with the help of a stoma nurse (a wound care nurse with specific ostomy training) you can find products and tips to truly let you leed a full active and free life with the dreaded bag. I swim, travel, chase grandkids, wear fashionable clothes (when I feel like it) and am really seldom walking around with a bag of poo on me as I had imagined. I go in the morning and usually late afternoon/evening but empty it right away and carry on. I'll help with tips IF and when you need.
In your case, there may be other options. My treatment was 9 years ago and things have come a long way. Was your cancer in your nodes to start with? Radiation is generally beamed at the tumor (anal) and it could be that the nodes are still sort of "in shock" doing their node thing and filtering your system. This treatment continues to work for a while after done, kind of like food taken out of a microwave will continue to cook for a while. Take a breath and think good things and don't cross any bridges until you are at them. I will have you in my thoughts and wait to hear what you learn next week.
katheryn
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Thanks for replying, Kathryn.eihtak said:Hoping2bcured...
Hi,
I am sorry you are facing all this...
My situation was a bit different. Because of size and location of my anal tumor, my doctor suggested a colostomy prior to even starting my chemo/rad treatment. There are several different types of ostomies and mine is called a loop ostomy which is most often done when there is a chance of reversal in the future. There was never a guarantee, but I was hopeful at the time, and, on the plus side, though an adjustment, I did not suffer with some of the painful bowel movements that others do during treatment. After the fact though, the radiation had caused enough damage to make a successful reversal unlikely and by then I had adjusted to life with such anyhow. Am I thrilled, no, but I am alive, and still do not suffer with those bathroom issues that so many post about. Yes, it takes some time to get used to, but it wasn't long before I learned the ropes, and if need be you will too. I joined an ostomy support group in my town that now I only rarely go to, but in the beginning they were a wealth of help. There was so much I learned. Like all the different manufacturers, supplies, ect. I will tell you with the help of a stoma nurse (a wound care nurse with specific ostomy training) you can find products and tips to truly let you leed a full active and free life with the dreaded bag. I swim, travel, chase grandkids, wear fashionable clothes (when I feel like it) and am really seldom walking around with a bag of poo on me as I had imagined. I go in the morning and usually late afternoon/evening but empty it right away and carry on. I'll help with tips IF and when you need.
In your case, there may be other options. My treatment was 9 years ago and things have come a long way. Was your cancer in your nodes to start with? Radiation is generally beamed at the tumor (anal) and it could be that the nodes are still sort of "in shock" doing their node thing and filtering your system. This treatment continues to work for a while after done, kind of like food taken out of a microwave will continue to cook for a while. Take a breath and think good things and don't cross any bridges until you are at them. I will have you in my thoughts and wait to hear what you learn next week.
katheryn
Thanks for replying, Kathryn. It's good to have someone to talk to. I'll keep you posted. I fell asleep after being on the computer so much. Now its 1:30 am and I have to try to get back to sleep.
Tough adjusting to the news that the treatment didn't take it all away.
Talk soon
Hilde
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Too long
Hi Kathie,
If anyone can inspire positivity, then it’s you! You & your husband’s journeys have been so complex, yet you still reach out to others. I hope that hubby gets through this next bout uneventfully, and that you can both gather some time without being or feeling sick.
Take care and I hope this new year brings you happiness
Kind regards
Liz
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Liz...pializ said:Too long
Hi Kathie,
If anyone can inspire positivity, then it’s you! You & your husband’s journeys have been so complex, yet you still reach out to others. I hope that hubby gets through this next bout uneventfully, and that you can both gather some time without being or feeling sick.
Take care and I hope this new year brings you happiness
Kind regards
Liz
Thank you, and much happiness wished back to you as well.
It looks like the next step for my husband will be radiation, he has a consult on Friday to discuss pros and cons. His cancer is so so complicated since this blood cancer grows out of the bone marrow and is everywhere. Sometimes it stays within that but it can also manifest in tumors outside of the bone. (Hes had them on his back and spine in the past) This recent bout involves a tumor on his arm causing a bad break above the elbow and in the collar bone. He had surgery to repair the arm followed by chemo (which he never completed) but it did not seem to have much effect on the size of tumor so they are considering radiation.
On one hand we feel so incredibly blessed to have had so much time since his initial dx (and mine for that matter) as the prognosis especially for him was not great. But now, he has maxed out most options for drugs and treatments and the cancer seems to be gaining strength so it is difficult. I don't know how he keeps going sometimes...
Thank you for your kind words!
katheryn
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Hi KathrynHoping2bcured said:Thanks for replying, Kathryn.
Thanks for replying, Kathryn. It's good to have someone to talk to. I'll keep you posted. I fell asleep after being on the computer so much. Now its 1:30 am and I have to try to get back to sleep.
Tough adjusting to the news that the treatment didn't take it all away.
Talk soon
Hilde
Hi Kathryn
I saw my radiation and oncology docs yesterday and they said that I am fine. The tumour is gone and not to worry about the nodes as they have shrunk to acceptable size. Nothing found during clinical examination either. So next visit is in 3 months and MRI in 6 months as for follow up protocol. Still in shock after reacting so badly to the MRI results which I obviously did not know how to interpret. Message to others- Wait until you see your doctors for results. Don't put yourslef through unnecessary worry and pain.
Hope you continue to be well, Kathryn. Thanks for contacting me and stay in touch.
Hilde
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Hi katheryn--
Hi katheryn--
I am so glad to see your post and update. Happy New Year! I'm glad you are doing well, but sorry to hear that your husband continues to struggle with his health issues. As tough as it is for us to deal with our own health issues, it's even tougher to watch our loved ones deal with poor health. I hope that your husband will continue to stay in the fight.
Like you, I have been quite absent from this site for some time. Long story short, we began working on our house in early October to get it ready to sell. Just as we were going right along on it and making good progress, I got a call on an early Friday morning that my mom had had an apparent stroke. She struggled to live for a week and passed away the following Friday. After the funeral, which was out of state, began the process of settling her estate, which is still ongoing. Admittedly, I haven't felt much like talking about cancer lately, thus my absence here.
You certainly have been a great friend to me and many others on this site and I am so glad you come back here now and then to update us. I wish you and your husband all the very best in 2020. Big hugs to you!
Martha
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Martha...
Oh Martha, I am so very sorry to hear of your mothers passing. I know you have spent time over the years traveling to be with and help care for her. Regardless of the circumstances, losing a parent is losing a part of our own identity. At some point in life we are referred to as "(name's) daughter" or we say, "shes my mother" etc. My mom died 15 years ago and after my dad died 2 years ago we too had that ongoing business of settling his estate. Some parts were so stressful, yet I found others to be really therapeutic for me as well. I'm sure its much more difficult considering the distance. My dads home was only a few hours away and I had a sister and brother to help. I sure hope you will be able to get through this task without too many bumps and back to your own work on your home. (We started that too a couple years ago, but now I like so many of the long unfinished projects that we have completed and I'm less motivated to move, lol)
Thank you so much for the kind words and well wishes for both myself and husband. I pray your New Year brings tons of happiness your way, and who knows, I may make my way through Georgia yet and we can actually meet for cheesecake and coffee one day!
katheryn
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Martha
Hi Martha! I had noticed your absence as you know, but then hubby had a heart attack so I kind of dipped out of here for a while too.
I am so sorry to hear about your mother’s passing. We are never prepared for it happening & takes our breath away. Then there are the complexities that follow such as her estate. Lots of mixed emotions that need to be processed and a time to take care of yourself.
Kind Regards
Liz
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Hoping2bcured...Hoping2bcured said:Hi Kathryn
Hi Kathryn
I saw my radiation and oncology docs yesterday and they said that I am fine. The tumour is gone and not to worry about the nodes as they have shrunk to acceptable size. Nothing found during clinical examination either. So next visit is in 3 months and MRI in 6 months as for follow up protocol. Still in shock after reacting so badly to the MRI results which I obviously did not know how to interpret. Message to others- Wait until you see your doctors for results. Don't put yourslef through unnecessary worry and pain.
Hope you continue to be well, Kathryn. Thanks for contacting me and stay in touch.
Hilde
This sounds like a great report from your doctors. I don't know if the worry of cancer returning ever gets easier (and for some, myself included, the fact that it has, only reinforces that)...Not long ago I had what turned out to be likely nothing more than an infected paper cut on my finger. My finger was warm, red, and looked like a sausage. Of course I googled the symptoms and have to admit that though on one hand, thats what I found, I also was not ruling out some cancer related lung, blood, bone, or God knows what issue. My doctor has always said not to search the internet for concerns better explained in person and that if I have them to come in or call him. (Btw, after a couple days and a warm soak, the puss drained from my finger and all was well) I guess in time we just learn to accept that anything is possible, but it is also probable that we'll get through it once again.
Congratulations again on the good news!
katheryn
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Liz...pializ said:Katheryn
I am sorry to hear of your husband’s struggles. I hope that the radiation is effective!
I will be thinking of you both
Liz
Thank you much! Also sorry to hear about your husbands recent heart attack. Hope he is recovering well.
katheryn
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Martha and Katheryn and Liz
Sorry to hear of your mom passing, Martha. And your husband's fight with multiple myelom, Katheryn. And your husband's heart attack, Liz. Life is good but can be a terrible struggle sometimes. It makes me realize I had no major crisis in the last year and count my blessings!
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Back at cha!
It's nice to see some familiar names like eihtak, mp327, and pializ. I hope I see more.
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It's been a long time since I've checked in here too!
My computer broke, got a new one, had to reload my saved pages and couldn't remember this one.....ugh....And, also, "life" just got crazy. But......so far all of my check ups have shown no sign of cancer. This site had brought me such comfort during my treatment and after. I was thankful to have found it. Learned a lot. Hope I can help others as they have helped me.
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Hi Everyone
One thing is for sure, we all have different paths through our journey. So many challenges both physically and emotionally. I miss seeing posts d
from people who have shared their journeys and given so much support on the way. I still pop on here from time to time, but as my treatment began almost 8 years ago in UK I am not sure how helpful I can be except to give hope to others. But it's good to see other others on here and still using this site!
Take care everyone in these COVID-19 timesLiz
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Hello everyone!
Long time since I posted and I haven't be hanging out here as much as I used to, but I should start again because it helped me so much when I was going through treatment. I am now 2 + years since diagnosis at stage 3a. Very fortunate to have found out about it when I did through colonoscopy. Best of wishes to everyone who is going through treatment now. 2 years ago I was feeling pretty bad right about this time of year. Very fortunate that I have fully recovered (except for some minor bowel issues which cause cramping occasionally.) I just want to tell everyone to just hang in there through treatment.
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