Missing my spontaneity

but…Ever since my cancer diagnosis, I find myself having a hard time planning too far ahead. I’ve lost a sense of spontaneity and often have to check my calendar for any upcoming doctor’s appts. before making plans. That didn’t use to be an issue for me because I always thought I was a young, healthy woman. So timing didn’t matter. I am not saying I am not healthy today but once you’re a citizen of cancer-land you feel less confident. At least I do.

Also, priorities change.

Let’s talk about vacations, for example. I schedule all my doctors’ appts. before I go on vacation, because I don’t want to think about them while I am trying to enjoy myself. I even postpone making travel decisions until after my appointments.

When I originally found my breast lump, I saw my GYN right away. I had already booked a trip to go visit my family in the Dominican Republic for Christmas. Three days before my flight, the doctor told me I needed a biopsy because my lump was a solid mass. Of course there were no appointments available for me before my trip. I did not know what else I could have done. I went on my vacation trying to believe that what they had found was a fibroadenoma — my GYN suspected that’s what it was.

But something didn’t feel right. I knew it was something more serious. What prompted me to feel this way was the look on the sonogram technician’s face. She did not say a word to me about what she thought the breast lump could be, since technicians aren’t supposed to give patients a diagnosis. But the look on her face gave it away — it wasn’t a look of fear but a look of “this has to be cancer.” She looked like she was very familiar with cases like mine. And those clicks! She didn’t stop taking pictures of the lump. And after all the weird dreams I was having prior to me finding my lump — yes, I take dreams seriously — I just felt something was about to change about my life. I knew I had cancer.

I had a terrible time while I was away. I didn’t sleep. I had the ocean a few steps away from me and didn’t even go in. The resort was so beautiful and peaceful but that didn’t matter. I had no peace of mind. I couldn’t even smile because I was worried about the biopsy. And of course, I spent countless hours in my room reaching out to Dr. Google about breast biopsies. It was awful. I felt a sense of desperation — a loss of control.

I refuse to experience that feeling ever again while on vacation. So now my travels depend on when those doctor’s appointments are. I also make sure I get the results before going anywhere.

My daydreams about relocating have also been affected by my lack of spontaneity. The thought of experiencing life someplace else, like living on a farm, has always turned me on. Now, because my doctors are here, I find it hard to envision myself ever living outside of NYC and I can’t stand it. I fear losing my medical team at MSKCC. I am aware there are good doctors everywhere, but I am still feeling like a baby bird who doesn’t want to leave her nest — reason why I continue to see my Onco 2x a year despite her telling me this is not necessary.

Another thing that has been affected by my lack of spontaneity is when and how late I stay out. I used to spend late night hours with friends. I hardly ever felt tired. But I don’t do that anymore. By 10PM I am sleepy. Now my joints are starting to hurt from Tamoxifen too. Some friends call me “old lady” but I know they mean well. Cancer treatments can make you feel older.

One of the expectations people have of cancer patients is that, once you’ve done cancer, you have to live life to the fullest; otherwise you’re doing survivorship the wrong way. I find myself attacking these expectations because it’s the wrong perception. We are regular people and only we know how to handle our challenges the best way we can for us. I am not ashamed to admit I am not a people’s pleaser. I like to stay true to myself especially when it’s related to my health.

But here’s one thing I’ve discovered about me: I am who I am. Recently, when I was at my GYN’s office the doctor said to me, “no matter what I tell you, you will always worry. And I guess that’s OK because it’s who you are.”

To think of it, I remember my student chapter advisor repeatedly telling me during college, “poor mother of yours! You are such a big worrier!” Others have said this to me too.

I’ve realized that the way I handle my cancer has a lot to do with the kind of person that I am. I like to have control over situations — and who doesn’t? Knowing about my health before making plans has nothing to do with “giving power” to cancer, as some people say. It has to do with the fact that I am a worrier and I’ve always been. Peace of mind is extremely important to me.

In a way I wish I could plan my vacations without having to think about my oncology appts. I also wish life circumstances hadn’t drastically change the way I function but I’ve adjusted as best as I can. Although I’ve lost my sense of spontaneity, I didn’t lose my desire to continue living. And that has to count for something.

Do you have a hard time planning too far ahead ever since your cancer diagnosis?
Do you find yourself making more plans than you used to because of your cancer diagnosis?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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22 Responses to Missing my spontaneity

  1. scottx5 says:

    I do hesitate to plan though I am breaking myself of it. Rebecca Hogue’s talks about this staying in place thing too. Also fear leaving my care team and losing what little history of me the medical system actually knows of. For me, it’s probably safer to move as I literally don’t exist to them anyway–disappearing as soon as I walk out the door.
    My favourite test experience was an echo cardiogram of my atrial valve before the first surgery. The kid doing the imaging shouted to the rest of the staff in the room, “Holy Shit come look at this!” Not knowing what the normal valve looked like I didn’t realize mine had exploded.
    Took me calling the clinic for months to find out the cardiologist had called me back in for surgery only a few days after echo cardiogram because they had lost the cardio’s message. Now I do my own bookings directly with the specialists. I’m not supposed to but being nice to their receptionists is way safer than trusting my doctor’s office. On the other hand I do know how the system here works.
    For a look into the reality that your worrying is not a deficit I think you should read the link I left on Facebook: Loss of self: a fundamental form of suffering in the chronically ill
    Cathy Charmaz
    http://www.aleciashepherd.com/writings/articles/other/Loss%20of%20self%20A%20fundamental%20form%20of%20suffering.pdf
    I feel destabilized and untrusting of things I thought backed me up. The world has failed to be as safe and supporting as it used to be. So worrying seems justified though not to the point of destabilizing.
    Worry and fatigue are unfortunate and natural side effects. My wife, Leslie, worries and sometimes seems like a control freak but before I met she’d been abandoned by a guy she was very much in love with and it just comes out. It’s a natural response to her experience to worry.
    Right now I’m reading “The Untethered Soul, the journey beyond yourself” by Michael A. Singer. Not very far into it but find myself arguing with the author over a few things but it has caused me to release some resentments my inner voice loves to remind me of. Feels a bit like clearing out the Museum of Hurtful things I spend way too much time curating. Maybe you can move some of your worries into the extra space I’m making? I’ll even do the dusting:-)
    Scott

    • thesmallc says:

      Scott, the things your medical team has put you through amaze me. You def. have a good reason to walk away and never look back. These are the people who are supposed to care for you at all times — what ever happened to the Hippocratic Oath? Be sure to keep copies of all your medical records so you bring them to your future doctors.
      I think most women worry…but I am not sure. Your wife Lesley has good love for you.
      Thank you for sharing that article with me. I’ll be sure to read it. I already can relate to the title (“loss of self”). Your second read doesn’t sound too bad either. Let me know how you like it.
      I wouldn’t mind moving all my worries into your museum — thanks for the offer!

  2. Erica Ramos says:

    I know what you mean!! A week before my diagnosis, we planned a fun trip with our surrogate as a last hurrah before trying to get her pregnant. I didn’t wanna postpone the fun for everyone and I really had no idea exactly what kind of cancer I had and or how serious it was at the time. My oncologist was really absentm, and it was super stressful for me getting correct info. I ended up getting really sick going to Disneyland on drugs and alcohol to subside my illnesses. Christmas and thanksgiving came right in the middle of my chemo. I ended up canceling my annual Hawaii trip, and that depressed me nearly as much as my digniosis but I would have been miserable. I also worked as much as I possibly could because financially it was a super tight time. The whole time was super crazy and I don’t know how I was able to take care of a surrogate and all the planning and stress of getting her pregnant at that time. No one really could understand our position at this time, some friends really disagreed with so much of what we were trying to do. I’m so glad I made it though. Still doctor are amazed, I am too. Life is one challenge on top of another, it never ends. Keep fighting and I’m super stubborn, that’s what I am;)!!

    • thesmallc says:

      Erica, I am sorry you had all of those things happen to you at once and that you also had to cancel your Hawaii trip. Not knowing what’s going on is frustrating. I remember the hardest part for me was not knowing how advance my cancer was. I have really bad cancer associations, including holidays and the winter (not a winter person here!). I hope you’re able to enjoy your holidays without thinking too much about what you went through.

      Somehow you made it work and now you have a beautiful baby. 🙂

  3. I totally get your sense of having lost the spontaneity … I wait until the last minute to decide to go on a trip, but then I need to plan out every detail. Where I used to be able to just fly someplace and figure it out when I got there, now I feel the need to have things planned out, and yet a desire to not have them planned out. I seem to have a three month event horizon. As much as I want to, I cannot seem to plan anything more than three months out. I’m trying to see my life further than that … I’m trying to tell myself “you are cancer free” it is time to move on, but alas, the side effects from tamoxifen are killing me … and I feel like I have prematurely aged … need more time to heal and pick up the pieces and figure out what to do next …

    • thesmallc says:

      Rebecca, I am sorry this is happening to you as well. I sort of have a limit to how far in advance I can plan too. Mine goes up to 5 months because I count between the two major appointments I have yearly: my mammo and MRI. I try to combine appts. around the same time as those two to allow myself this much time to plan. Personally, I don’t put too much pressure on myself to move on — still can’t figure out what that even means — but I do pamper myself. I say you continue to go at your own pace — know you are doing the best you can.

  4. scottx5 says:

    Maybe because I actually AM old I don’t notice the aging thing. What I’ve missed is the resilience and though I do take some things really seriously have never struggled with authority as much as in the cancer experience. As the chemo wears off it’s becoming clearer that I’ve transferred too much power to people who are disrespectful of what a person is. They are either stupid and thoughtless or have been awarded the role (by me) as someone I need.

    So still muddled by chemo-brain of not I’m reassigning support roles and forcing myself to take things back. We necessarily transfer needs for others to do for us and it’s made me weak and in-confident. So making mistakes and bad decisions are my next project. I used to be able to get in and out of shit without over thinking it and mostly it was about turning the volume on hesitation down. It also means working around people who don’t affirm my life and I’ve already set a plan in place that removes unhelpful people from key places in my life.

    That means my doctor’s clinic can’t screw up as much as they usually do with messages from my specialists because I’m building back-channels directly to the people who send those messages. Same with other’s who make things difficult–no longer putting up with them means first, no more confrontations, just work around them until they become irrelevant. Sounds like a cliche but taking my life back is really improving my outlook.

    • thesmallc says:

      Scott, when we feel vulnerable we tend to depend on others because we want to be helped. You gave permission/power to those whose only responsibility was to care for you as a patient and they failed you. You did not fail as a patient.
      You are entitled to take your life back — looks like you have a good plan in place. You deserve a better situation.

      • scottx5 says:

        Thanks Rebecca, I was vulnerable by being very sick and unable to explain myself which made me frustrated and I walked out of the interview. This was turned into my being “abusive” and ran on a month until I gave up. This is a rough place and you get what you get here so I’m not entirely surprised on how I was treated. I’ve had worse.

        If there’s a next time with these people I’ll just disengage. No sense investing effort in a lost cause. Really, it’s up to me to keep me alive so if it gets dangerous I’ll get out of there.

  5. Amanda says:

    I make no plans at all but that is all due to the illness I suffer from my chemo. I never know when I am going to feel good or bad or inbetween. I will only ‘go with the flow’ and advise anyone inviting me to a party or such, I’ll be there if I am having a good day. Even a trip to the supermarket can’t be planned.

    • thesmallc says:

      Amanda, I was the same way during my chemo treatments, especially with my diet (constipation was no joke!). It’s best to go with the flow. You also need to be extra careful as your body becomes weaker and cannot be exposed too much.
      You’re half way there!

  6. I think this way too. Not just vacation fun stuff. Some of my clients want to schedule my sitting services a year in advance, and at times I get frightened by that—how can I be sure my next scans will be clean? How can I be sure I won’t have to rearrange my carefully constructed schedules and impact clients, lose business? Sucks.

    • thesmallc says:

      Wendi, I totally understand about your sitting services. It’s unfortunate that most of the decisions we make are now based on our medical history. True there are no guarantees but most of us feel safer being prepared, and that includes not planning too far ahead.
      I bet those animals love you!

  7. bethgainer says:

    Rebecca, I’m so sorry you have had cancer happen to you. I can totally understand why you were miserable on your vacation. Boy, could I relate to this post. I feel the same way you do about being away from my doctors. Like you, I know there are great doctors in so many places, but I cling to my doctors and am afraid to be away from them. Cancer sure does a number on one’s sense of control. Like you (and probably most people), I really need control over my life. It seems you have regained some control by deciding when you go on vacations and deciding how to coordinate your vacations with doctor visits. Good for you.

    • thesmallc says:

      Beth, I am sorry you are in this mess too. One of my biggest losses has been losing some level of control over my life. It doesn’t feel natural to me and I am not used to it. I’ve adjusted as best as I can but it still feels as if I lost a sense of self. I am not completely free. But I am treating my body like a spoiled brat because it’s the only one I have, even if it hurts itself (can I get an awww?)
      I hope you’re doing well.

  8. Rebecca, I also had a vacation scheduled right after my ultrasound, but before the biopsy. The only saving grace for me, and it made a huge difference, was the ultrasound technician was certain that it was benign. He gave me such a false sense of peace, I actually didn’t worry about it on vacation. Of course, he was wrong, but to this day I’m grateful for a technician who didn’t know what the hell he was talking about.

    Personally, I’ve long been afflicted with feeling like I can’t make plans too far into the future because you never know what changes may disrupt your life. When I realized it was stopping me from enjoying life, I bought tickets for a play I wanted to see several months in advance, believing my circumstances would allow me to go. Sure enough, I saw the play in early July and was glad I didn’t listen to those nagging fears. Surviving is tough.

    Oh, also, please don’t ever be ashamed for not being a people pleaser, but being true to yourself. That is exactly the way to be. It’s a good thing.

    • Ah,. I see I read that people pleaser thing wrong. You’re good with it and I’m glad. xo

    • thesmallc says:

      Eileen, I am glad you were able to enjoy your vacation. I am sorry the technician’s diagnosis wasn’t correct.
      Good for you on buying those tickets!! I am glad you saw your play and enjoyed it and that there was no reason for you to feel anxious.

      I didn’t mention in this post that Denial came over last month and spent the night. Well, a couple of weeks. I have never gotten bad Pap test results in my life so I made plans — a trip to Montreal for 10 days — thinking I would be OK. Right before I went away the doctor told me I may need a biopsy of my cervix because they found abnormal cells. I didn’t enjoy my trip. Again. So now that I got the biopsies out of the way and I seem to be OK for now, I went ahead and planned another trip to Montreal. Now I see my Onco next month and she usually does markers. I ask myself, do I get the blood test done before my trip or after? Knowing myself I may just go and get the test done because I am stubborn.

      I find myself being less of a people pleaser after my diagnosis and my only regret is not being that way before. But we live and learn.

      Thank you for reading and commenting.

  9. Carrie says:

    I think because I’m still in the thick of things, I can’t plan too far ahead. I still have weekly PT appointments, my clinical trial appointments, therapy, studies….it’s so hard to plan when there’s also work and a child. I think I want to be the person who plans to do all of the things I haven’t had a chance to do yet; visit India, learn the ukulele, take a sushi making class…but time doesn’t allow it. Nor does finances. I still have a life to live. A normal life. Or at least, that’s the life I’m trying to live. A normal one. I’ve never wanted normalcy more in my life!!!!

    • thesmallc says:

      Carrie, I wouldn’t mind going to India or learning how to make sushi which I enjoy eating a lot (when we meet up, we should plan to eat sushi). I miss school and was planning to eventually go back, but I can’t even consider it at this point. My priorities have drastically changed and I wish the reason wasn’t because of my health.

      Your days will get better and you will gain some level of freedom. I am not sure things would ever be the same but they weren’t the way before I was dx either, just wish the circumstances were different.

      We do our best.

  10. The Accidental Amazon says:

    Oy. I was okay with plans for a while initially, and then the fatigue wouldn’t go away, and I stopped being able to plan anything. When I finally did make a plan — I forget for what, except it was fun — a few years later, it felt like a monumental act of bravery. I’ve gotten a bit better, but I pick and choose my plans very carefully. Because you never know, do you? xoxo, Kathi

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