Living with Stage 4 cancer in times of uncertainty / Corona Virus .

Well dear friends, here is my cancer story. . I found out a little over a year ago that I now have stage 4 metastatic Breast cancer. It is widespread in my liver. I thought now during the times of corona virus that it is time to write my story.

I actually found out before my trip to Scotland and Ireland. But, waited on some treatment till I got back. Was not going to give up that much planned trip. And Dr. said a few weeks would not make a huge difference.

Let me go back 23 years or even longer to talk about history. Many years ago my Aunt Pauline died of Breast cancer at 49 years old. A few years later my Aunt May died of Breast cancer at 55 years old . Then a few more years and my Mother got it. She lived another 25 or so years before it came back and took her life. So, as you can see I am not a stranger to cancer. 23 years ago I had my first round of Breast cancer. At 42 years old. My first thought was, I am going to die. Having watched my 2 aunts die from it. I had some treatment and went on for another 8 years. Then came the second round. More treatments and another 12 years before it reared its head. Now it is back and stage 4 which means in- curable. And treatments have been hard on the body. Many don’t realize that I have been living with cancer for 23 years !!

February of 2019 I had Pneumonia and that is when I found out that I had cancer in my liver. Biopsy showed breast cancer that had spread widely in my liver. No surgery as it is to widespread . No radiation for same reason. So now I have metastatic Breast cancer which is not curable because at this point it is in the lymph system and blood. I had not been feeling right for about 10 months . Getting worn out easy, having some intestinal issues, some pressure in my right side, pain in my rt side which is called referred pain because lucky for me this cancer is not so painful in itself but when the liver enlarges it can pinch nerves and cause right side pain, pressure, and pain in right arm and shoulder. As it gets worse I suppose there will be more pain and swelling from fluid . I had even mentioned to a friend right before I found out that I thought I had cancer again but did not know where and did not want to know. That was my mind set. But , I found out from X-rays for pneumonia in which a part of my liver showed up.

My prognosis now ? Unsure….. wait and see…. incurable… could be a year left of my life . Could be 10 years . No one knows as people are living longer with stage 4 cancer now. But, the death rate has not gone down much . In fact the amount of people getting cancer has gone up and the age has gone down. I am in a metastatic cancer group and am surprised at how many with stage 4 breast cancer are in their 30’s ! Also, living longer does not allways mean with quality of life. A stage 4 cancer patient is always struggling to hold it in check.

I am now already on my second line of treatment and will find out in early June if it is working or not. Scan anxiety is real and is coming up for me now as my next scan is June 5. My first treatments worked for about 8 months then the cancer grew. That is how it goes. There are a few treatment options and you go for one and it may work awhile but eventually stops as the cancer mutates. Then you go on to next treatment. How many? I am not sure. New ones coming out tho all the time . Then the last ditch effort if you still want to try the medical route is trial treatments which means going to a big clinic like Davis or UCLA or one of the others. But, what does it mean to be in constant treatment for cancer?? It means drugs with side affects. Side affects like loss of hair (which my current drug has not caused), stomach upsets, headaches, skin problems, fatigue (with most all cancer treatments this is the biggest side affect ! ), brain problems, mouth sores, heart palpitations, breathlessness, nausea, vomiting, diarrhea, and the list goes on…. and on…. And yes, I will be on treatment for the rest of my life or till I say no more. I am not going to die doing chemo. When treatment for me becomes to much that I have NO quality of life or very little quality of life then I will stop them and live without treatment for however long I have. Some people will go on and stay on treatment till it in itself kills them. Not me. I am looking for quality of life more then a few extra months.

Alternative treatments?? Well, let me just say that these are tossed out to me all the time by well meaning people. However, I do want say right now to all of these people , yes, I have done tons of research and I know about a lot of the so called cures. Does anyone ever cure stage 4 cancer??? Rarely and even then you can not really say it is cured but more like in Radical Remission. But, do you personally know someone who cured it by juicing, eating broccoli all day, doing coffee enemas, vitamin c injections, heat therapy, etc… IF you personally know some one then I might like to talk to them but believe me the cures are all over the internet and invariably lead to links to buy this , buy that, buy this series and you can learn all about how to cure your self. So, to those of you who think I am not trying hard enough , just know that I do incorporate some of these ideas into my routine, that all natural cures and clinics are very very expensive and hold no guarantees and that I personally have never known anyone cured of stage 4 cancer. Also, keep in mind that there are over 100 types and sub types of cancer and that each person is individual so one persons experience is not another’s . I get so tired of trying to explain this to people when they tell me about the auntie who got over colon cancer by drinking lemon juice, or the uncle who cured his prostrate cancer with garlic, etc… Get what I mean??? It is what we call cancer shaming. When people imply that you are not trying hard enough if you do not try all these alternative routes. Also, keep in mind that it is MY body and My DECISION to make on what I will do and what I will not do and what I feel is best for me. I want to live just as much as any of you so if you think I am not trying then get out of my life . I don’t need you harping on about what I should do. This is very important to me and I hope I am getting it across. I will never tell you what to do if this happens to you. I will only be there for you to give my love and support. If you ask my advice as someone who has gone thru it , I will give you whatever info I have but I will never say. Why don’t you do this or do that. So and so did and they got better. It is all a crap shoot . No guarantees!!

Last thing I want to touch on is living with stage 4 cancer in times of corona virus. For those of us with cancer who are in active treatment, we are very vulnerable to the corona virus.  Every day, we make ordinary decisions that could have extraordinary, detrimental results. According to an article by Statnews, researchers say that we’re 3.5 times more likely to contract the corona virus and 79% more likely to need hospitalization or to die from it.  Those statistics are sobering Staying within that range of uninfected people leaves cancer patients like myself with some difficult choices. How long can we self-quarantine? And what about our family members or friends who are going out and about, not adhering to the same strict self-imposed safety standards we are such as social distancing and rampant handwashing? How do we distance from them? How do you treat someone you love like a stranger with a touch of xenophobia?  And what about doctor’s appointments and treatments?  Do I forgo blood work and scans that’s keeping an eye on my progression in lieu of social distancing? How do I social distance in a clinic that has all kinds of virus exposure. Lucky for me my small town of Truckee,Ca. has had very few cases of the virus.

The one advantage cancer patients have going into this is being well aware that life comes at you fast, changing in a moment’s notice. When we’re first diagnosed, we think we’ll be the one to beat incurable cancer. And for a while, we do. Then it comes back and we redefine our win as being able to live alongside it as long as it’s not doing any damage. Then it does damage, and our definition changes again. Winning is living with pain that can be managed.  Winning is living with decreased lung capacity or slower brain functioning. We listen to people during this pandemic telling us it’s just a matter of time before life returns to normal and do our best not to smirk because we know it doesn’t return to the way it was. It evolves into something we call a “new normal,” a term many of us loathe.

In that respect, cancer patients are better prepared than most. We know the horrors that are on the horizon, the losses, the grief, the regrouping and the resiliency.  We know that there are some things, no matter how hard you try, no matter how many good decisions you make, you still can’t protect yourself from. We know how to live in a world that doesn’t have answers.

As a wise woman once told me, when there are no answers, there are choices. And your choices will be changed, just as you will  be changed by them.

So, I will carry on and continue to try the best I can . I am sometimes feeling overwhelmed as some of my friends may be starting to notice but I have not given up yet !!! I hope to travel more, hike more, camp more , and do the things I love . When I can no longer enjoy any of this then I will throw in the towel as in stop the treatments. I am not afraid to die. I have faith that I will be re united with my loved ones and my several furry babies that have already moved on. I have faith that a better world awaits.

Thank you to my friends and family who love me , understand, and continue to care.

17 thoughts on “Living with Stage 4 cancer in times of uncertainty / Corona Virus .

    1. Thank you V !! I hope I can travel some more. That was what I was going into doing full time when I found out about this. So many disappointments. But, I can still do some trips when I feel up to it.

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  1. Sue, you are an amazing person; strong and true to yourself and those you love. Your words are powerful. I am beyond blessed to have been your friend for over 20 years. I agree with all you have said. It’s your life. You know what is best for your body and you know what you want to do With your life. I miss you and love you and we will go camping!!!

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  2. Hi Sue, thank you for this post, sharing such personal feelings. So well written too! We are with you and think about you daily. We love you

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  3. I have been thinking of you! So grateful for your words today~
    I just wrote to a friend yesterday how surreal life feels against the backdrop of Covid 19—But on some days it has not really been the backdrop, more like the closing curtain as everything else seemed to fade into the background.
    There are still many days when I must quietly remind myself that life is still happening in all its fullness—with light & dark, joy & pain, and yes, with the courage & uncertainty for a friend battling cancer.
    On other days I feel more clarity. Perhaps it is that the pace of things has slowed so dramatically that there is more space for appreciation and understanding of all life’s happenings.
    Reading your story makes me think that’s what cancer might be like, too—I pray for you to have many days of clarity (amidst the foggy-brained ones!) and that you keep walking in beauty—as you have always done. Much love, Colleen

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    1. Thank you Colleen, Yes it is uncertain times as it already was for me. So, now I am struggling a bit with depression but still pushing myself to get outside !!! That is what makes me happy. Being outdoors, music, animals, friends and still seeing select friends for walks out doors but it is so hard not to hug them and be with them without fear.

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  4. You are unlike anyone else I have known! I have no doubts that you are going to continue to live your life on your terms and, hopefully, that will also include many more beautiful hikes, adventures, and your amazing photos! Hugs from afar….

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  5. Great post and we’re close to being neighbors- I live in north auburn off 49. We moved up here from the Bay Area to be “closer to nature” but farther from my doctors at Stanford- I have an oncologist at UC Davis now – but I’m unimpressed at best with their patent centered approach…it’s nothing more than a fiction that’s meant to attract more $$$. Anyway I’m glad I came upon your blog and hope you’ll take a peek at mine. I’m on my 7th line of treatment in my 7th year and have been writing my blog for over 6 years. MBC can take over life sometimes and my approach and philosophy is much like yours, find your tribe, find the best care you choose, and I won’t die in some Hail Mary chemo pass with no QoL quality of life. And you never know perhaps one day it would be great to talk to someone in person whose eyes won’t glaze over. There’s a language and a shorthand already in place and a lot of empathy rather than weird advice if friends and family (normies) stay around at all. Most of mine have ghosted me already. Or don’t believe I have terminal cancer because I “look great.” I don’t. I feel like crap and aged 10 years in 5, but I’m here and still doing relatively well. Love your writing and your voice and look forward to more.❤️ Ilene at https://cancerbus.com/

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    1. Hi Ilene, I am surprised to see you on my blog as I have not kept up with it at all. And I actually have done more wandering. ha ha. I wanted to re shape my blog but never got to it. I mostly post on Facebook . And I have just a group of people who I post my cancer battle to. Because I have so many Facebook friends and at first was not sharing it with very many people Anyways, good to hear from you and you are very near me if you are in Davis. I am in Truckee, ca. I love the cancer center here in Truckee !!! My Dr is amazing as are all the nurses, etc. We get free accupuncture, massage, biofeedback, therapy (love my therapist too), and I also have a Palliative dr and a naturopath. So, to update you on my story a bit in the cancer dept. I did 2 lines of treatment fairly quickly . Oral treatments. For about 1.5 year. Then they sent me to Davis to see about a trial but it was to intensive for me. So I said no. I also said no to I.V chemo here. My Dr still wanted to keep up with me , blood work, scans if I wanted, and just checking to see how I was doing. I try to eat super healthy but unfortunately I have been drifting from place to place to place without my own place. I now have an apartment coming up in July when they finish the building . So excited !!!! So, I had mets to liver (widespread) and a little in lungs. the lungs cleared up from the first 2 lines of treatment. Liver did not. Then I refused the chemo for 7 months. Went in after 7 months for scans and had a lot of spread. bits and pieces in my lungs, lymph nodes in chest, lymph nodes under original B.C arm, tumor in my ovary (thought to be cancer ) and a couple spots on bones. We radiated the one that was hurting me and then after much procrastination and stress I decided to try some chemo. I am now doing monthly infusion of Doxil. Its a little rough on me but tolerable for now. In July I will have scans after 3 treatments to see if it is working. So, that is were I am at now. Kept up feeling pretty good till a couple months ago and then way more tired which Is why I decided to have scans, now still getting out some and doing walking, short hikes, some travel. still meditating, keeping positive , and thinking when I get in my place I can step it up much more on natural stuff . It is so hard now as I move around a lot house sitting and my mind is spacey and I need my own place very badly !!!! Anyways, got to go. My email is sierrasue333@gmail.com . so, we can catch up with each other more on there. By the way this is my 3rd bout with cancer. Started at 42 (I am 67 next week ) , came back at 50 and then again 2.5 years ago as mets. Hope to connect !!! Susan P.s would love to hear more of your story too. Also look me up on Facebook. I think there is a link on my blog.

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      1. Will do! My email is iakaminsky@me.com and I’ll look you up on Facebook. If you go back on my blog my entire cancer experience is all there in black and white. I’m finally getting around to putting a book of poetry together to be published, a bit of work to gather, format and edit but I want to get done by the time I go to Ireland. I’m in auburn so actually closer to you than Davis. It would be great to take a ride to Truckee especially after this lockdown and we moved here just before Covid so if friends were to be made it wasn’t going to happen then but I hope to now!

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