Al about how I found my "tribe" through social media and I hope to help you do the same. If you need any help navigating Twitter or Instagram, email me at firstname.lastname@example.org. Also, I am offering FREE resume help for other cancer patients to be "work ready" - check out my post on my other blog at www.thenextstep1234.com/blog/how-i-want-to-help-other-cancer-survivors. Thanks!
Some pics from a recent meet up :)
Instagram Stories are fast becoming my favorite thing to do and post - if you are not already following me on Instagram, please do I am @thetimebetweenis.
I have been living on the edge since cancer. I was someone who experienced things on an extreme level for many years. I lived in fear and anxiety. I would imagine myself in a situation and feel such fear that I would not be able to actually even consider being in said situation.
I had a phobia of traffic - of being stuck in traffic or being away from home too long. It was a lot for me to work around but I would force myself to do certain things and force myself NOT to do a lot of things. I definitely was experiencing the world of mental illness. I let me world shrink - it did not happen overnight. One day, I was flying around the world for work and fun and then all of a sudden, I did less and less. I stayed closer and closer to home when I was always meant to fly.
Sharing this is hard. It is embarrassing to think about all of the opportunities I missed, of all of the things I was not comfortable doing. Of how much I was not happy and comfortable in my skin, with my life and now I realize damn, I had it all. I did not have "cancer", I was truly free but in the disease of my own mind so not that free.
Now, I have no such fears. I refuse them, I refute them. I laugh at them. This week alone I have driven myself into the city for two different things. I have been focused on maybe being an entrepreneur again and building something exclusively mine. It is a lot to handle. In the midst, I have had meet ups with folks who I never would have met if not for this big c word.
It is hard to believe that I am still so close to my BD time (before diagnosis). It has only been a year and 2 months since I was diagnosed. In this time I have had to learn quickly how to retrain my brain, how to let go and be me, how to deal with the fear in a constructive way that maybe some day I could die from this disease. Instead, I refute that possibility and instead focus on LIFE on what I can do right now, here, today instead of worrying about my tomorrows.
It is one hell of a way to live and maybe someday I will forgive myself for not living this way BD -- ah, frig it, I already have.
This is what I do in the time between...
There comes a time when even the most people pleasers of people pleasers (me , I am their queen, hi nice to meet you) realize it must stop. That giving and giving to people who don’t appreciate it and would only give once to you no matter who they are must be turned down.
It’s hard. Really hard. I learned though that I need to focus on me, my husband and my kids. I need to stay healthy, in fighting form and I can’t do that when I’m bogged down by other stuff.
Some of that other stuff in addition to people pleasing is the run of the mill fear of dying and not keeping my promises.
I promised myself during chemo last year that I would change my ways. That I wouldn’t be a crazy helicopter nah shirt-mom. I wasn’t in the helicopter, I was like in the children’s shirts and not allowing them to be on their own or with others. I promised I would be more focused on what I need in my life. That I would take risks. That I wouldn’t settle for what I thought was being a “good mom” and putting myself last anymore.
And you know, so far, I am doing it little by little. I have learned to let go and let God in ways I never ever thought I could. I am like chill af now as the young kids might say... I do not get ruffled often. I do not panic anymore. I have a routine and a plan for managing most of these types of issues. As someone who always worried about everything I don’t worry anymore. Occasionally I get scared and spooked but I just roll with it by acknowledging the fear letting it sit with me for a few minutes and then dtmf down after the 5 minute mark.
I listen to a hypnosis by Seth Deborah called “victory over cancer” and it’s a great visualization technique to see my body healing or to help my body heal.
I also do mindfulness meditation, a novena every night before bed and exercise or at least walk 10k steps every day.
I eat well and have found that taking 3ml of melantonin helps me sleep like really sleep... like life before kids sleep. I found post surgery, chemo and being put in immediate menopause almost one year ago meant that sleep was now a challenge a real big challenge. I would lay awake for hours, despite being so tired. I wouldn’t dream much. I would wake up too early and not be able to rest again. I was taking 1-2 .5 milligram anxiety pills (have to check the name) from my oncologist every night to try to get sleep. Now, after a half hour of laying down, I am out cold. I get up at like 330 to pee and then boom right back to sleep til 6.
It’s amazing. I was born tired so getting to rest is huge for me.
This weekend, I worked on doing something really new. Both kids slept out and my husband and I took a surprise drive to Atlantic City w place we spent lots of time at before kids. We had a fancy dinner and also met up with an old friend of mine from grammar and high school!
I got home at 2am friends!!! And woke up at 7am because I had to get to my sons basketball game at 9! I am finding it’s ok to balance the different parts of me. I got some good news about some exciting opportunities for me to maybe just maybe be able to use my writing and social media skills as an income generator - more on that soon.
I volunteered to be part of the planning committee for the Making Strides Against Breast Cancer walk for Staten Island and there’s more to that tooo coming soon! And I’m stepping wayyy out of my comfort zone again soon in February a few times - can’t wait to tell you all about that too!! You got to keep reading ;).
I continue to try to exceed expectations on this new normal. I have so many ideas and plans to help others adjust to this “new normal”. I am here and I plan on making the most out of whatever time I have left and I hope it’s a long ass time- what about you?
I have been writing a bit about my clinical trial here but have not updated in a while. I decided, after careful thought and prayer, to sign up for the Pallas clinical trial back in August. I had just completed all of my "treatment" and was now down to going to see doctors once every 6 months but with surgeon and oncologist, that wound up to be every 4 visits a year as I would go in May and November to oncology and June and December to surgeon. Oh and in between those dates, I go in for my Lupron shot every 3 months, too so that is usually February, May, August, November.
I completed chemotherapy in May 2017 and my last radiation was July of 2017. I saw my oncologist once after chemotherapy only. She recommended at that visit that I consider joining the clinical trial for IMBRANCE (called the Pallas trial). I wrote all about my decision process and how the trial works regarding if you get the pills or not here --> lets-get-clinical-clinical.html and also here --> integrative-medicine-clinical-trials.html.
Getting cancer is almost like a part time job, really. There is so much to do but for many people, there is a "post treatment" funk that is common to all cancer patients, in my opinion. We go from seeing doctors and medical teams every 2 weeks for treatment and bloodwork and then we see everyone much much less. For me, this is not the case but it could have been if I decided not to do the clinical trial.
Yesterday, was my visit to get bloodwork and the next 3 cycles of drugs for the trial. Originally, I was going in every 2 weeks to do bloodwork and then at the 4 week visit picking up the month's pills (see more about that here - going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html). I last was with oncology in October to do the bloodwork and then I was given the 3 cycles of pills. I am now on the 6th "cylce" or month of Pallas. I have been lucky in that I have not had any noticeable side effects. I do have low blood counts, which is normal for this class of drug.
The trial lasts a total of 24 months. I am happy to be doing my small part in helping test a new class of drug for breast cancer patients. It is an already FDA approved drug for those with stage 4 breast cancer. It is being studied to see if the same effects of cancer killing can be proven in earlier stages. I do this trial in addition to my hormone inhibitor and Lupron ovary shot.
I will update again on how it is going. Did you take part in a clinical trial? How did you find it? This is what I do in the time between.
A year ago today was my first meeting with my oncologist at Sloan. Before that, on December 29 2016, I had the meeting with my surgical team to go over the results of my pathology. It was overwhelming and although I already knew I had lymph node involvement (we were told as soon as I woke up from my mastectomy on December 16), it did not really compute, you know? I mean, I knew that meant I needed "chemotherapy" but I had not a clue what that meant at all.
Ah, ignorance really is bliss. I knew it was big and I knew it was something I had never ever envisioned myself doing...like ever. I think, though, this is true of all of us no matter our family histories or our backgrounds, "risk factors" or lack thereof, etc. No one expects to be told they have cancer and no one WANTS to get chemotherapy. No one.
I felt my oncologist's pain as she sat with us a year ago today for almost 2 hours (or more maybe) going over all of the ins and outs of what chemotherapy I would be getting, why I was getting it and about the side effects and how to help/manage said side effects. She wrote everything down for me in amazing handwriting, filling pages of information for me. It was an amazing appointment and one that without the written notes she wrote down for me, none of it would have sunk in.
At this point, I was working full time as a teacher, I even went back to work early after my surgery to be back to "normal" as soon as possible. It was a relief to have the cancer out of my body and I knew deep down that this whole chemotherapy thing was going to stop me from being "normal" and I was scared shitless. I had no one really to commiserate with other than my angel, my sherpa, who Sloan connected me with who quite frankly saved my life with these --> tricks-for-treatment.html for chemo.
You see, chemotherapy breaks you down. It strips away your hair, your dignity, your brain, your ability to "do anything" so that your body can ironically heal. It is quite confusing and I know there are a lot of people who are pressured from family and friends to forego chemo and instead to lick a unicorn but really, chemotherapy is one of the best tools out there to hopefully kill cancer cells.
When I began chemo a week after my first meeting with my oncologist, I was prepared and yet totally unprepared. You see, no one knows how their body will respond to these drugs. As someone who rarely took an advil, who didn't drink, who never took drugs, well, this was all uncharted territory for me. (And yes, I know I'm a square... I don't even drink coffee... what a dweeb. I mean, if I knew I was going to spend the big 4-0 getting pumped full of all kinds of shit, I would have imbibed a hell of a lot more.. .or period lol).
I survived chemotherapy and I worked full time during it but I could not do much else. I was not able to care for my children, to cook, to clean, to really move beyond that school bell at 3pm when I went home from work and just became a vegetable.
It was hard as shit. I was told I would have support, that everyone would be there for me but the thing about chemotherapy is that it strips you down to nothing. No matter who is "there" or not, you can barely notice. You are just functioning at the barest minimum. Still, I worked. I got up each morning, put on my wig, my lipstick and went to work. As a teacher, I was exposed to germs, the flu and more. Luckily, I did not run a fever during chemotherapy. I did learn how people can be nasty and heartless. I let it go here --> an-open-letter-to-me.html.
If you are here, at your first oncology meeting where I was a year ago today, you got this. Trust in your self, in your body. Do what you need in order to survive this process. God willing, you will never need to do it again ever. Remember, though, our sisters and brothers for whom chemotherapy is an endless routine to keep them alive. Pray for them. Pray for us, all of us, that a cure will be found. In the meantime, drink lots of water. Rest. Listen to your body and read and share my post about treatment tricks (link below). This is what I do in the time between...
I am pathetically positive. What does this mean? It means that despite my life experiences and recent foray into the world of BREAST CANCER, I am still really really sure I will NOT die of cancer. If this isn't positive thinking, I do not know what is. I was always on the outside a positive person but on the inside, I was the person who prepared for the worst and hoped for the best. This is not positive. This is planning for the inevitable BAD thing and maybe, just maybe manifesting said bad thing with all of the posturing, worrying and planning.
Now, I find myself to more often than not be on the side of expecting the best and planning for the best. This is a radical change for me. I was the person who got Straight A's in college but still knew I failed every test as soon as I put down my pen and handed it in. I was pathetic period.
At this point in my life, I am more informed and more well read on all things "cancer" related and adjacent. I understand, in some ways, my risk for becoming dead from cancer and yet I am incredulous thinking of it. In my heart of hearts, I am convinced that I will not die of cancer. It is quite shocking for me to be in this mindset after a lifetime of being convinced of doom and gloom without even a scratch on my health record. I am the person who got a million dollar life insurance policy for $69/month after all. Health has been my currency, it has been who I am inside. Just always healthy BUT not always happy.
Every night, I pray for me and my children to be "happy, healthy and safe" and I have been doing this for over a decade now. It is funny how I always prayed for health but never appreciated it. Despite my glowing health, I was a bundle of anxiety and nerves on a daily basis - nah on a minute to minute basis. Now my health is (I guess) "shit" but yet I am more confident, more comfortable and more focused than ever in my life on the GOOD.
Does this mean I do not worry? Ha, no not at all. I do still worry and it creeps up behind my shoulders whenever I am not looking, this fear, this panic, this feeling of "why does my side hurt - is it cancer?" but when it does show up and hit me, I hit back with this sense of peace, this internal calmness that I have never had before in my life. I credit my faith for this feeling of peace as well as my ability to numb myself with meditation, hypnosis, prayer and good thoughts.
I am treated at the number 2 cancer hospital in the world. I am surrounded by a support system that rocks. My children appear to be "normal" despite the fact that I was at one point not quite sure I would live, however briefly I thought that a child picks up on these thoughts more than you can know. I am back to fighting form and feel (knock on wood) OK. I mean, I am not perfect and never was but all things considered especially when you think about and read the side effects of just a handful of the medication I am currently on NOT to mention the surgery, chemotherapy and radiation I did just this past year, well, I am really lucky.
Being put into menopause and given tons of steroids and chemotherapy led to an immense weight gain. Having a radical mastectomy means that my right side is always a little off and sensitive to pain and pressure as when my son accidentally bumps into my right chest area and I see stars for hours (sometimes days).
The chemotherapy I started a year ago this month leads to tons of side effects that I deal with as best I can. There is chemobrain (this is so real; there are times I feel so off but then times I feel so "normal" but all in all, I lost a bunch of brain cells and it is what it is) and neuropathy (pain and tingling in hands, feet, legs, etc) but it is all manageable because I am still alive.
Every 3 months, I get an injection to stop my ovaries from working as I had a hormone driven type of breast cancer. I have been in medically induced menopause though since after my second chemotherapy in February 2017 so almost one full year without having that monthly reminder of being a woman. My mom did not go into menopause until she was late 50's and I abruptly changed over at 40. I take a daily anti hormone pill that also strips my body of hormones. There are so many side effects to these things on their own and together and yet, knock on wood, I am surviving it.
When I go in for check ups and mammograms or other medical tests, I get PTSD and worry hard. But I survive it. When I hear about my friends losing their battles, I get a feeling of the flu over my body, pain in my extremities and more. My ability to feel emotions and sadness now impact me from my head to my toes whereas before it stayed in my chest and my brain. I worry for my friends who are still dealing with scans and spots and nodules with the overarching fear that the goal of all of our treatment is really not to cure us but to stop disease progression. Cancer wants to progress, it wants to kill, it is its function. Stopping it is what I focus on doing for me and to hopefully help others figure out their plan to do the same.
Despite all of that, I am still sure in my body's ability to heal. Confident in my own jagged, broken down body that it is inherently curing itself along with the doctors' help. I cannot live any other way. To me, this makes me a new and improved version of me but also, deep down, I like to call myself "pathetically positive" or "stupid positive". As a former financial services professional who worked during the subprime mortgage explosion, I derided the big push of all financial services firms hiring "risk managers" or "risk compliance officers" or "chief risk officers" because I knew that people cannot adequately quantify or understand risk. If we did, none of us would get married or have kids. I feel I hired myself to be my own "chief risk officer" with the blinders on to navigate me through this world of broken down health, to get me back to fighting form - like a government bailout but for my own cells and shit.
This is what I do in the time between.
I have lost people to breast cancer a few times already since being diagnosed myself. Most of the folks I have lost, despite never having met in person, are still mourned by me -- I wrote about it here --> on-mourning-forbeth.html. Unfortunately, since Beth's death, a few more women in my social network sphere have died from this beast of breast cancer.
And now, I lost someone I knew in real life, too. I have known Marie D for years. She was the woman who always answered the phone at my mom's job and when she picked up, we would chat for 5-10 minutes about life and stuff. She was always so sweet and really interested in how I was doing, in general, with life, work, kids and stuff. Whenever she saw me, she hugged me and was genuinely happy to see me. She loved seeing my kids and how they grew and grew.
She was diagnosed right before I was or right after - my memory is murky. My mom was so sad because Marie was diagnosed with Stage 4 de novo and we knew already that was not good.
Life circumstances can really suck sometimes and Marie had a tough time dealing with the diagnosis and managing her treatment. She stayed local due to reasons that suck - financial and other. You see, even for me, with my husband and family all helping, getting to Sloan multiple times a month for treatment and appointments costs a lot of money. Plus, there are other bills and requirements to get the "best treatment". It is not a level playing field at all and really even with the "best treatment", stage 4 sucks balls and kills left and right.
The last time I spoke to Marie, she called me to talk about her upcoming mastectomy. She had done chemotherapy for months and then was going to go in for the surgery despite the doctors knowing she had spots all over her liver, bones and a few other spots. She and I spoke and I cried and told her I loved her. She was afraid of the surgery and I told her that she already had done the hard part - chemotherapy is so harsh and she had been doing it continually for months and months. I told her all about my surgery and what it was like during and after.
Shortly after her surgery, she took a turn for the worse and then just this week, she died. I feel gutted and also unable to help. I mean, I could not even see her in the hospital - I just could not do it. My mom went and visited and sent her my love but I just could not physically see her so ill and not freak out.
I did freak out anyway. Today was the wake and I just could not go. I woke up feeling off and confused. I dreamt that I was at work again and someone was trying to kill me with a person-hunting dragon and I was climbing high up to get away from it. Subtle, huh? I guess the dragon was cancer and the job thing was due to the issues I had at work an-open-letter-to-me.html before I was terminated...
I am not proud of myself but this is how I had to exercise self care. I get that breast cancer kills. I have seen it from a distance and now more closely, though with a self imposed distance. I am still trying to squint at it from afar and deal with it as a (God forbid) potential outcome for me, my friends, and others who have walked this road as the 1 in 8 but it sucks balls. It really does. I am forever hopeful that it will not end in my untimely demise and that even more so a cure will be developed and work for the 1/3 of us who become stage 4 after having breast cancer.
Bravery is only possible in the face of this because I truly try to stay as positive as possible. I pray for Marie D and her family and friends and I hope they understand why I had to stay away. Cancer sucks.
This is what I do in the time between. Rest in peace, Marie D.
We made it, friends! It is 2018. Many of us are still actively fighting cancer, some of us are done with treatment, some of us are stage 0, stage 1-3, stage 4 but all of us are praying and hoping or wishing for a cure to this disease.
No matter our stage, diagnosis, age, life issues, we all are aware that our life is potentially in trouble or could be lost based on the state of our cells. It is tough to understand and even tougher to get straight answers from medical teams as the fact remains that no one knows. The future is not clear but TODAY is. We are cultivating a life of living in the moment - or at least trying to do it.
I try and fail on a daily basis to keep my thoughts in today, to let things flow off my back and off my mind to stay present in the RIGHT NOW and not the "what if" or "what can". This is not easy for someone who used to be such a control freak, type A personality that everything was planned and then re-planned, everything said to me or about me was taken to heart or caused me to lose sleep or lose my sense of peace.
I have come a long way from this old me but I am still in need of improvement. I am doing all I can to stay as healthy as possible all the while knowing that the future is not promised to anyone. I am focused on doing everything I can to stay healthy while understanding that I have to only think of today. Thinking of tomorrow, a year from now, two years from now, etc is not something I can do without fear. I do not think anyone who has / had cancer can think long term without the constant "what if?" but I want to try to make it much less constant.
When I was filing my paperwork to be a non profit to help cancer patients get back to work, I was thinking about what would happen "what if" and it was making me crazy. I find when I am stressed or perturbed, these thoughts hit me more. When my kids look at me and ask, "Is the cancer gone?" it hits me right in the gut. Of course, I tell them yes but the truth is we just do not know.
I want to manifest for myself this word peace - a life where I live in today and do not ruminate over yesterday nor think about tomorrow. I am focused on finding a job which means I am thinking of the future in terms of being an employee again but I think after all I have been through, I can do this day by day.
What do you do to help yourself live in the moment?
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