The land of topsy-turvy

March 18th, 2013 § 25 comments

Metastatic cancer is an introduction to topsy-turvy world.

Things I once counted down to now I must cheer.

The first time I was diagnosed with breast cancer (stage 2, in December of 2006), I counted my chemo treatments down. “Only  2 more adriamycin/cytoxans to go,” I might say, or “Only 4 Taxols left.”

Now I’m forced to be glad for the chemo rounds.

I started my 12th round of chemo yesterday, on Sunday the 17th. After being sick with a bad cold and stomach virus this week I’m feeling not-quite-ready to start again. I haven’t had enough time to rebound and my side effects are not as reduced as they traditionally have been. My feet and especially my hands are not in great shape and I’m limited as to things I can do. For a few days I had trouble walking. Some days I can’t hold a coffee mug. Most days buttoning and unbuttoning are a lengthy challenge. Typing is sometimes painful as well.

Whereas before I could look forward to the time when chemo would be over, now I must be happy for each round. I must realize that it means another week alive, another week the drugs are working.

Another week to be a wife, mother, friend, daughter.
Another week to write, another week to love.
Another week to hope there is a new treatment brewing.

My milestones used to be measured in how much time I had invested to get through to the other side: putting cancer in the back seat. The goal was successfully completing surgeries and chemo so cancer would be more like background noise rather than an attention-greedy headliner in the spotlight.

But now all of that is backwards. I don’t count down until my treatments are over because they are going to be here for the rest of my life. That’s a hard one to accept some days. There is no “when I’m done with treatment.” Not taking chemo would mean I’ve run out of options or the treatment is worse than the disease. There is no after. There is no “looking forward to being done.” Being done now only means death to me.

This is the way it is.
Everything is upside down.
And that’s how life has felt every day since I was diagnosed with Stage 4 breast cancer.

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§ 25 Responses to The land of topsy-turvy"

  • Jennifer says:

    So tough Lisa…your writing is truly amazing…have been reading your blog for quite a while now and have felt your pain with you…you are one of life’s stellar human beings…and I send you warm wishes and hugs from south Africa… Jennifer

  • dedangelo says:

    Love from Arizona

  • Lore says:

    Beloved Lisa, that is all I can say. When I read your e-mails, I fall still and am with you for a few moments,without words, just holding you quietly in heart. May you find peace.

  • Kristin says:

    Oh Lisa this post really got me. For all of the petty times, I will think of you. For all of the days that seem endless, I will think of you. For the times when I lose my patience, I will think of you. For all of the beautiful sunny days, I will think of you.xo

  • Kate says:

    I’m not sure I could look that in the face. I wish you many, many days with as little pain as possible. Days with smiles and those without. Quiet days and boisterous days. Tenderness and silliness and breakfasts and spring times and

  • Sarah says:

    Lisa – you are in a unbelievably hard position! Yet, you keep going – I guess mainly because you don’t have any other treatment options or any other choices at this point! Are there any clinical trials you could look into?

    I was wanting to ask you a question: When you were told that your cancer had returned, and the only options were to again have Chemotherapy – did you ever think about NOT choosing to again put yourself through Chemo? Or, had you always known that you would go down this road no matter what?

    I only ask because, for now, my cancer is not active, thank the lord! However, being a very aggressive and Chemo resistant cancer, I 100% know it is going to return (only unknown for me is, dont know when – as per comment i posted on your pervious posting) and I have often pondered what exactly I will do, when this returns! Chemo totally destroyed who I was – I was basically a shell of the person I used to be, and I had many side effects that were horrific! No way I could continue to be a Nurse, icouod barely stand most days!
    This is where I wonder about the Quality versus Quantity! Please, don’t get me wrong, I have fought for my life – and wasn’t supposed to make it six months, let alone four years – but I know what Chemo did, and does to me – I am scared to knowingly put myself through that again without the motivation of hoping for a remission of sorts!

    That is why I am wondering if you ever had any doubts about heading back into the “lions den” so to speak, or had you never questioned yourself ?

    Thanks so much in advance,
    Sarah from New Zealand

    • I have many treatment options available which is why I never hesitated to start. There are standard chemos, both oral and IV, anti-hormonal agents (because I have estrogen receptor positive cancer), and potential targeted therapies to look at. Everyone always talks about clinicial trials but the reality is that you must start with the standard of care (usually a chemo and/or anti hormonal) to be eligible. Those must have been tried and deemed “failures” (cancer not responding) before they will enroll you in the clinical trial. It’s the trial protocol. The other option is that the experimental drug is given along with the standard of care in one group and just standard of care in the other… you have to be doing the things most likely to give you success first or alongside the experimental drug.

      The chemos for stage IV are often quite different than those you get the first time. So what you are facing if you are stage IV does not necessarily mean the same regimen you had before. There are many options and the issue of quality of life is a main focus if you have stage 4 since it’s “for the rest of your life” that you must deal with the side effects, not just a temporary situation.

      No, I have never questioned what I am doing treatment-wise. It’s working. It’s giving me time, and my quality of life is quite good. It’s the most I could hope for at this point, given the diagnosis. Of course you don’t have motivation of remission, but shrinking the cancer and getting stability for a while is my goal. Additionally, once it’s out of the breast and mestastasized, you will get bad side effects/pain/problems from having it in its new location. So it’s not like “doing nothing” will be pain-free or better in many cases.

      I know I should be able to get at least a year or two, or maybe more. I am 6 months in so far. I might be able to get quite a few years with my type. But no one knows, of course, how long I will respond to each drug they use, which group I will be in. There may come a day when the treatments are too hard, but that day is a ways away. I see what they can do to help us and having a doctor who will work with you to maximize your time, results, and comfort is key.

      I don’t know if you are triple negative and that’s why you say your prognosis is poor, but in my own case, there are many different treatment options available and more hopefully on the horizon. I hope that answers your questions. Thanks for reading and I do wish you the best in getting more time before dealing with this.

      • Rebecca says:

        Can I ask Lisa, while you are talking about options.. why do you have 2 oncologists? Do they ever differ in their opinions on what course of treatment you should follow? How do you handle that?

        • I’ve always had two, at the suggestion of my first one! The short answer is that when I was first diagnosed in ’06 it wasn’t clear if I’d need chemo. My local oncologist thought it was a good idea to go to Sloan Kettering to get a 2nd opinion. They actually have agreed on major decisions, with me being the third decision-maker. The bottom line is that the patient has the final say anyway. Sloan has clinical trials that are available and having access to those is good. I also was very fortunate to have a second pathologist look at my original slides because they found the cancer to be more extensive than the first pathologist had. I think a second opinion on pathology is very important.

          That said, there is also a practical reason for it. When I went through chemo the first time, both agreed on the regimen. There was no reason to be traveling an hour to receive the same drugs. It was much more convenient to get chemo 15 minutes away and deal with side effects and complications locally as opposed to travelling an hour to the city every time.

          With stage IV the treatment is not so cut and dry. There are many options. They don’t always have clear preferences because much of it is guessing which will work for you/trial&error. While some choices are obvious (based on HER2 status, hormone receptor status, etc.) once you get past that it’s a lot of educated guesswork.

          I like having both opinions. And in the end, I am the one who makes the final choice. But they have different strengths, so it works well for me. I’m always about learning more about the disease… hope this answers your question.

  • Despite the harshness of the treatment that lays you so low, hoping that you keep on getting one more week for a very long time.

  • Greg says:

    Also hoping for many, many, many one more week’s for you! At the same time, also hoping there is eventually more time between treatments.

  • Dear Lisa, I’m at the point of nearing my end of chemo treatments and I do find myself counting them down and waiting for the last one. This is where I am now, but when I read your words, I can only see your journey and I can imagine it. How painful the realization. I’m not sure I’d be so diligent about writing and helping others – as you are. Thank you for setting an example and for guiding the rest of us through this journey. Thank you for the insight and honesty. You’re a bright light in this world and I’m grateful that you’re here.
    Sending you warmth,

  • JoAnn says:

    Lisa, your writing is amazing to me. I feel like you express so many of the emotions I feel but have trouble verbalizing myself. I can really relate to everything you’re saying. You help so many people like myself by sharing your thoughts. Thank you for that. I also have mbc. I will be starting a new drug that was recently FDA approved called Kadcyla. We’ll see what happens – one day at a time.

    • I hope it will be helpful. That’s for HER2+ disease which I, unfortunately, do not have at this point. Hoping for conversion at some later point. Thanks for reading and let us know how you do with it. xo

  • Anonymous says:

    Lisa, your writing is riveting! Whenever I see your name, I immediately want to know more. Your writing captions my emotions and love for life. You are always in my prayers! I am curios to know why you mentioned: “That’s for HER2+ disease which I, unfortunately do not have at this point”? Is this a better bc to successful treatment? Can your mbc convert to this type? xoxo and lots of warmth and Love, Marla

    • Thank you for the compliments! Yes, HER2 Neu + disease used to be more difficult to treat. With Herceptin and other new targeted agents, HER2+ disease has some other options available if you qualify. In that sense, yes, it’s better to have the overexpressed form of that gene because there are other drugs to try. Yes, breast cancer can covert in type so if you have a new diagnosis (a new primary BC, or a new diagnosis of stage IV, or have been stage IV for a while) it’s always critical to have the tissue re-biopsied to see if it’s changed. Mine, for example was ER+, PR+, HER2- the first time. Now in stage 4 it’s showing ER+, PR-, HER2-. It was previously thought that once you had a certain “kind” of breast cancer it was always the same. But I believe it may be approximately 30% that “switch” types.

  • Susan says:

    Lisa your words resonate and I know it’s a different state of mind with type of treatment, treatment and the fact that the promise of some sort of end goal of finishing treatment is not on the horizon today. Of course we all hope for a miracle find, but you are realistic. In reference the the HER 2 neu status they are starting to do trials of using herceptin for people that aren’t her2neu. Yet we all know how long these trials take. On a very positive note I am pleased that you are hormone positive because that will give you much more options than those with MBC that is triple neg. Of course it comes with lovely side effects. Meanwhile I send you prayers of light and cyberhugs.

  • erikarobuck says:

    These posts remind me how every day that we are here with our loved ones is a gift. I know these years will not be easy, but I wish you many of them so that you can be with your husband and children for as long as possible. Sending thoughts of healing and peace. xo

  • Lee Newbold says:

    Dear Lisa
    Thank you for your honesty….strength and love to you and yours….

  • After my last surgery (On my ankle) I inexplicably lost all feeling in my hands. I couldn’t hold a pen and when I finally could, I couldn’t write. It looked like the handwriting of a doctor, or a two year old. I went online and found a Buttoner thingy. Simple to use. When I finally got the use of my hands back (the surgery was 5 years ago and parts of them are still numb) I ruefully tossed the Buttoner thingy into a drawer, thinking I would never use it again. WRONG. On occasion I’ve had to use it. It’s easier than doing it myself.

  • Sorry you aren’t feeling up to par. This always makes chemo harder. I am in the same boat. Chemo forever. It’s what we have to do until they come up with something better. The buttoning and dexterity probs are a definite challenge. I always give it a try first, concentrating as much as possible. Luckily my Mom is here to help but lately I’m doing better. Sometimes you just want to scream! I used to count down too. I did that with my recent radiation since I had to go every day. Keep up your spirits Lisa. Sending cancer sister strength your way.

  • jbaird says:

    Lisa, I am also in the same boat, so I can relate to every word you wrote. As to one of your comments, it is actually true that a patient can be enrolled in a clinical trial without having failed on something else for the same disease. I am one of those patients: I am now in a clinical trial at Stanford that is first-line treatment for HER-2 positive mbc. I also have two oncologists. I was very fortunate to get into this trial, and am thanking the Lord for every day I have been given. Living with side effects is hard, but I just keep keeping on. I hope you live a very long time with a good quality of life. xox

  • Denice says:

    Lisa, your posts are amazing and inspirational, as are the comments……Here’s hoping, for all of us with cancer/MBC.

  • Lisa, thank you for your honesty. Your writing is amazing and powerful. I send love.

  • My younger sister Lisa had rheumatoid arthritis and was waiting for hip replacement surgery. I went to live with her for three months to care for her following surgery, and one day was happily chatting with her about…”when you get better we can go shopping…”. She said :Susie, I’m not going to get better”. That matter-of-fact statement brought me up short and made me see her in a different, more deeply caring light. She died a year later, bless her, despite anything I or the medical world could do for her. This powerful entry of yours recalled that experience for me. I would do anything to help you, Lisa, but there is nothing I can do, save admire your courage, strength and will. God bless you.

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