Breast cancer comes with its own world of procedures and protocol and when you first start on the journey to getting cured (fingers and toes crossed) you do not know the map of what happens, when and how.
I found even asking other survivors was not clear and I think a lot of that is because you just try to forget as much as you can as fast as you can. I mean, there are some days that I forget I even have/had breast cancer (I prefer to say "had" but the timeline to being cured is 2-3 years post initial diagnosis, barring any findings). So, I will say "had" but really I still am in treatment and even post treatment, I am still in this in between world of cancer-free and cancer-NOT-free.
At the end of May, I had my oncology follow up after finishing chemo and I was worried about what it would entail. This month, I had my follow up with my surgeon and I was remarkably less nervous. I was calm going in for this follow up even though I had no idea what would happen.
For the oncology follow up post-chemo, you do blood work and it is a lot of blood not like the usual finger squeeze this is the full vein set up and they check you for everything. The blood work though was done at the end of the appointment and you are called about the results. The actual follow up is similar to your during chemo appointments - you are asked about symptoms and checked to make sure your breast(s) and/or chest area are clear with physical exam. Also if you are on medication of any kind to cease your hormones (if you are estrogen/progesterone positive you will be put into medically induced menopause as the hormones drove your cancer).
As I am on the "young" side (ha) and my cancer was hormone driven, I get 3-month oncologist meetings to administer medication via needle to stop my ovaries from producing eggs. I also take the daily pill to suppress my hormones, too. Even though without this medically induced menopause, most women find their fertility demolished by cancer treatments in general. I am thankful my family planning was done but I still need to be very careful and maintain the menopause as my body would not be able to handle a pregnancy.
For the first surgeon follow up, you are just physically checked out and set up for your next appointment in 6 more months. At the one year post surgery visit, you have mammography, ultrasound and/or physical exam of the chest area to make sure you are still clear.
I realized today that it has been 6+ months since my surgery. Time definitely does fly and like I said you just want to get to that point where it is all in your review mirror and a distant memory. You cannot rehash it everyday and/or think about it obsessively. It is what it is. You might never know why you got cancer, but you got it. At least now you know what happens at those 6 month visits.
I am assuming my visits with the oncologist will continue to just be blood work and exam but I will update once I get to the next visit.
I spend about 90% of my time convinced I will beat this and be cured - actually if I am being honest, I kind of spend that 90% of my time thinking I already beat this and am cured.
But there is always that tiny bit of doubt - that little bit of fear - if I am not going to be cured or (God forbid) worse.
I do my best to focus on the positives in life - always have and most people who have been with my on this journey either friends, nurses, doctors or radiation techs all comment on my smiling ways and how much I laugh about this process. The loss of the breast, the ultimate decision not to divorce my husband in a few years, the baldness - it has all been something for me to make jokes about to make people laugh even down to the guess what I got for my 40th birthday? (Punchline - cancer!)
I never liked to read the news before because all the tidbits of death and destruction made me anxious but now it has the opposite effect - it forces me to understand that life really is unpredictable and if I spend too much of my time panicking about cancer ending my life then my life is already over.
So I allot just a few minutes every couple of days to think about the "what if..." worst case scenarios but I try to counteract that immediately with my faith, my belief in my doctors and my general all around wonderful family history of health and my own, too - despite this breast cancer issue I have always been healthy as a horse and an early to bed early to rise type of person.
But now I want more than that. I don't want to miss out on things that I used to cower away from either due to anxious thoughts or other silliness - I want to be a real friend again and do social things, I want to stay up late and not always be so dang responsible all the time. I have been responsible forever - always the first one home from the bars or the designated drivers and before that helping care for my brothers and managing my parents divorce etc etc.
Today was an off day, though. I read about Joe Biden's work for cancer and the article mentioned how cancer is so tricky and hides and attacks and all that jazz and it made me feel defeated. I started to think if this is all known about this disease will my body be smart enough to cure itself with the doctors cures and all the other things I will also do once radiation is over?
And then I remembered, this is no way to think. I have to just enjoy my life and forget all about the disease. My oncologist told me at one of my last visits to do just that. She said, "Once your chemo and radiation is over, just forget about this and continue that way unless I tell you otherwise." And I am taking that to heart.
That is what I will do in addition to some other tweaks and changes I am making to diet and exercise once I am totally done with treatments. I have 9 radiations left so that time is coming soon.
What do you do to keep the bad thoughts at bay? Any ideas on diet and exercise to keep the cancer away?
I am so lucky - no really, I am. Even with the Stage 3 Breast Cancer, I am always smiling, joking and laughing - maybe I am just crazy but I think that humor really can be the best medicine. I am always joking about my one-boob, bald head and basic "luck" of having a mammography and sonogram done in April 2016 that showed 99% chance of remaining "benign" growth that by December 2016 was 5.6cm of cancer AND in 5/25 lymph nodes -- with those stats, I started immediately to play the lottery :).
I am most lucky in friends and family, though and this weekend cemented that fact. My best friend and I, who had our first joint birthday party back in 1990, held a joint 40th birthday / fundraiser for St Jude on Saturday night.
For the first time in a long time, I danced the whole night with my girls and my kids - in fact, my son and his friends and cousins really warmed up the dance floor and danced for almost the whole 4 hours! They love to whip and nae nae!
My mom really worked hard on helping us throw this party especially since I was undergoing chemotherapy for the months of planning and was really unable to do much of planning or anything besides work, sleep and repeat every day. We had food donated for the event from Arrochar Food Services and Joe's Lobster House and a candy cart from A Precious Party Rental and a dessert table from Laura Ruiz.
Chris, the DJ from Sound Explosion, was awesome. We had 25 raffle baskets with donated fare such as gift certificates to Jet Set Hair Design, This Is It Hair, Paco's and Michael's Meatballs and Martinis restaurants. Our birthday banner was donated by Ida Art Vinly Graphics and we had knit angels with the breast cancer ribbon knitted by Elaine's Creations.
We also had a number board and a 50/50 and our invites asked for all gifts to be donation to St Jude's Children's Hospital, which I mentioned in a previous post thetimebetweenis.weebly.com/blog/category/doing-good. Thanks to the generosity of our 100 guests, we ultimately raised $4475 for St Jude!
I am truly blessed to have a friend like my co-party host. She and I met back in 1990 as freshman at St John Villa Academy and have been there for each other, one way or another, ever since. She is the kind of friend that years can go by and yet when we get together, it is like we just saw each other at lunch in the Villa cafeteria the day before. As soon as I mentioned to her during a visit she paid me while I was recovering from my mastectomy if she wanted to throw a party with me in June, she was 100% on board and willing to do it! That right there is amazing because I never would have done it on my own.
I am lucky and blessed to have people in my life that are just always there for me- even though I have spent the last decade hyper focused on my children - now I know that you need to live each day and embrace those you love - and I look forward to having the energy to go out dancing more and more in the future! And the "best" part is by having the party 6 months after our actual birthdays, we just made ourselves 6 months younger, too!
Also, if I do say so myself, we looked awesome! For me, this is no small feat as for the last 6+ months, I have been not at all focused on looking or feeling glam. For the party, I got a new wig with hair down to my butt and wore heels for the first time in years (cannot blame the cancer for that, I never liked heels). My feet still hurt from all the dancing!
Special thanks to all who attended and to the local businesses that donated to the party and of course to my mom and best friend who have truly been my rock through all of this and helped me have something BIG to look forward to besides just kicking cancer's ass!
This is what I do in the time between...
When I was a child, I was a worrier. I was born an "old soul" and at times I was the most mature person in my house, no joke. My parents were young parents with 3 children and like all of us, bills, bills, bills. So the way to manage that with childcare was for one parent to work days (dad) and one parent to work nights (mom).
When my mom left to work at night, I would often lay awake worried about her - would she get to work without having a car accident, would she come home in the morning. I guess being a kid and needing ones mom is just ingrained in you and night time is always when the boogeyman comes out - for me the boogeyman was this fear that it was nighttime and she was not home. I was under 10 years old and I see it with my own kids - at nighttime, they need to know I am home to reassure them.
One November night when I was almost 15 years old, we got a phone call at home from the police telling us that she had been in a car accident. Being a teenager and the aforementioned old soul, I immediately jumped in the car with my dad to go see what was going on. My grandparents were at this time living with us and they stayed with my younger brothers. In my mind, I imagined she was laughing and going to scoff at us for rushing to the hospital. I guess it did not connect if that would be the case that she would have called us ourselves (or not as she and my dad were estranged at this point).
When we got to the hospital, I was able to sneak in to the Emergency Room on my own while my dad spoke to doctors and what I saw was just the culmination of those fears from years ago - my mom was mangled and bloody and unconscious (spoiler alert - she survives the accident but with broken bones and internal bleeding that led to the loss of an unimportant organ). It was the shock of being faced with what was just a bad nighttime dream but it was real.
Fast forward 25 years and on a day in November, I as a mom of young children am diagnosed with breast cancer. I could not help but see the connection of what it feels like as a child to see your parent incapacitated or, in your mind, near death and how my children would handle knowing I had a disease that could potentially (God forbid) lead to death.
Life does not always go the way you expect - you think, as a parent, I will not make the mistakes my parents made and then you get hid with something beyond your control which in a way makes you realize you could wind up with a similar result. There is more to my story from childhood but I am not willing to put it all here in a blog but even with the broad strokes of the story, you can paint a picture.
I was the uber mom - the one who was 150% on top of everything, managing the children and making sure they knew they had me for anything they needed. And now, I have had to pull back and not be uber mom but just basic mom. I have had to focus on myself and surviving surgery, chemo and now even with the relative "ease" of daily radiation, I am still not 100% myself.
I still have to hang back and hold on to my energy. I also have recognized that my children can bloom more without me hanging all over them all the time and that I, too, need to have some me time -something I never ever would have admitted before for fear it would make me a "bad mom".
There is no such thing as a "bad mom" - there are sucky life circumstances like car accidents and cancer diagnoses that make people have to rethink how they are raising their children and how to then make the children feel secure again. It is like when you break a vase and repair it no matter how good the glue is and how expert your hands are at putting the pieces back together, you can still see the cracks. As a child, once you realize your parents are not immortal, it is shocking even if you are older when you first realize it.
I am hoping that this experience will lead to my children to be resilient and strong much like my childhood left me being resilient and strong. I do wish they never had to see me so weak and "ill" as I was during chemo and that they did not have to wrap their head around how much they hear about cancer killing people so that they too could have extended their childhood bliss for more years but that was not to be the case.
Instead, they know that I am 100% human and also a strong, bad ass, kick ass woman who survived a mastectomy, 8 rounds of chemotherapy (while working full time) and now daily radiation all to defeat cancer. I hope and pray that years from now, they realize that we are all superheroes - them for dealing with this at such a young age, me for being strong enough to fight with a smile on my face and everyone around us for stepping up and being there for us during this time, including those two little brothers of mine who I always helped and protected as a kid, well, when I was not yelling at them.
This is what I think about during the time between and wanted to post it to share how life throws you curve balls and you need to be able to catch it and throw it back.
The big party is in one day; without a doubt, this came quickly. From sitting on the couch and planning it back post-mastectomy in December to this point, even going through chemotherapy it did kind of fly.
We have so many people to thank for helping us throw this party celebrating life and to give back to the fight for those who are young. Children should not have to get chemotherapy, they should not have to understand the thin line between health and the lack thereof.
The vendors and businesses we would like to thank and single out for helping with this event are in the photo below.
The baskets and raffle information is here:
Raffle Basket TIckets: $20 for Ticket Pack; all sales benefit St Jude’s
Number Board: $10/box and 2 winners for $250/each; $500 to St Jude’s
50/50: $20 for 10 tickets; ½ to the winner and the rest to St Jude’s
Bernie & LiLi’s 40th Birthday Basket Raffle for St Jude Children’s Hospital
1- Martial Arts Basket- gift certificate, CDs, clothing
2- Teenage Mutant Ninja Turtles toy, water guns and octonauts figure
3- Movie Tickets gift certificates and decorative garden supplies
4- $25 Jet Set Hair Design Gift Certificate and decorative garden supplies
5- $30 Spa Certificate and bath and body supplies
6-$35 Wine & Design Gift Certificate and Painting
7-Girl Toys - Diary and Fashion Maker & Makeup
8- Coconut Cups & Lemonade / Ice Container
9- Tequila & Glasses
10- Liquor Basket
11- $50 Gift Certificate to Michael’s Meatballs and Martini’s Restaurant
12- $50 Gift Certificate to Paco’s Restaurant
13- $25 Scratch Off Lotto Basket
14-Summer Fun Basket
15-Summer Fun Basket
16- Summer Toys Water Slide and more
17- Candles Basket
18- Pyrex 10-piece
19-Christman Basket Candles and More
20- $25 Lotto Scratch Off Tickets Basket
21- $25 Lotto Scratch Off Tickets Basket
22- $25 Lotto Scratch Off Tickets Basket
23-$25 Lotto Scratch Off Tickets Basket
24- $50 Lotto Scratch Off Tickets Basket
25-$50 Lotto Scratch Off Tickets Basket
The party is almost here and I cannot wait to report back on how much we have raised. Already, we have $575 raised and the party did not happen yet.
I am looking forward to celebrating life and enjoying the company of my friends and family as we work on helping children with cancer. I also want to enjoy the fact that I am going to beat this - anyway I can but always with a smile on my face.
As a child of divorce, I always had a tainted view of marriage and am still surprised that I took the plunge and said yes to the dress in 2005.
Marriage came with ups and downs and you really do not think about the sickness and in health bit until shit hits the fan.
Through most of the marriage, I was the caretaker of all and sundry including helping my husband manage some major health crises and of course caring for the children and the house oh and working on and off throughout, too.
When I was diagnosed, I had no clue how anything would play out in terms of my appointment scheduling, surgery recovery, chemo, radiation etc etc. It is not just oh I have two weeks where I will be out of commission; it is more like a year of being unable to function at a normal level.
At one of my chemo appointments, the nurses were telling us about someone who had just stopped coming to treatment and it had turned out that the husband left her during the process and she could no longer get to treatment. Once the hospital found out, they arranged for her to have transportation and help but it was a jarring example of this whole "burnout" that can happen to the caregiver spouse.
And I get it because for many years, I was the caregiver and it does lead to an issue with having a "normal" marriage; although no married couple I know has a "normal" marriage - no one really knows what that means even, I guess.
Shortly after I began chemo, I had to let my husband know that I now could no longer divorce him; that for many years, my plan had been to be alone and single and now I realize that he is someone that is a true partner and a wonderful human being. See, being married makes you forget all that.
Marriage is just built in gender roles and resentment - it was not until I needed him more than I ever did before that he was able to step up and be a true partner to me and I am not the sappy type but yet I find myself near tears thinking about how much he has done to just be there and help me through this. If I even think for a second that I will not make it, he gently taps my cheek and reminds me that the surgery removed the cancer and the treatments will make it stay away (God willing).
I do not know the impact of breast cancer on all marriages but I can say that all things considered when I think about the before diagnosis picture of my marriage I can say that the after picture is much better.
I am not someone who is sappy or over romantic but I know that having my husband step up and be there for me has been an amazing wake up call to the reality of my marriage vows and makes me want not want to be alone and single in the future.
He takes time every day to tell me I am beautiful and desirable - despite the fact that I am bald and missing a boob. This is what I do in the time between - realize how important relationships are and how lucky I am that I have someone in sickness and in health despite the fact that I never ever appreciated being married before.
I hope your partner is there for you and if not a partner then friends or other relatives. No one should go through this alone; if you need someone, I am here for you!
The "secret" of life is just simply not to think too much, not to plan too much and just to enjoy each day.
The stories of those who survived and beat cancer are inspiration; the stories of the other outcome are things that you try to avoid hearing about. It seems part of people's interaction with you knowing you are fighting cancer is to tell you either of someone who beat it (I do not mind hearing those stories) or they want to tell you about someone who lost their battle (I do not want to hear these stories).
I think most people have no clue what it is like to be facing a life threatening illness and the radical treatments to eradicate the disease from your body. I think these people who have never dealt with such a diagnosis cannot be expected to know what to say or do for those who are fighting.
I try to just go day by day and deal with the issues at hand instead of making myself crazy with plans and back up plans for the future. I do not know what tomorrow holds but truly none of us do - we just have to enjoy today.
My goal each day is just to do that - to enjoy the fact that I do not need to go to sleep at 3pm due to chemotherapy, to enjoy the sunburn from my daily radiation treatments and to stay focused on the fact that my body is that of a warrior. My one boob and my hair growing in (slowly but growing nonetheless) is just proof of the war I have fought to stay here to beat this disease and make it never show its face here again.
I am already dreaming of my tattoo that will say, "Cancer picked a fight with the wrong bitch!" but in Italian so it will be more "classy" - it will be more like "Cancro ha scelto un lotto con la donna (troia) sbagliato" - though troia is really a more derogatory term than bitch it is hard to translate "bitch"... it will have to do.
This is what I do during the time between.
Cancer comes with its own world and vocabulary. When you find out it is inside you, you just want it out as soon as possible. You cannot see past getting it out. Before you can get it out though, doctors need to be sure of what you actually have and what surgery you need (if you can even get surgery).
Depending on what you have and where, you have your surgery. Depending on the surgery, you are given a follow up treatment plan. The treatment plan might include chemotherapy and radiation like mine did.
When I began chemo, I was most concerned with my immune system and having to potentially go to the hospital with any temperature over 100.4. With two school-age children who often get sick in the winter, I was very concerned about this temperature cut off. I also wanted the chemotherapy to finish as quickly as possible. When you first sit down with an oncologist, be prepared for a lot of negativity. I think it is because they worry you will say "no" to the chemo. Trust me, if I thought for a second that I did not need chemotherapy, I would have run away immediately after hearing just SOME of the side effects.
For my cancer, I was prescribed 8 rounds of chemotherapy in 2 week intervals across a total of 16 weeks. Do you know how many days that is - I did - I kept a running count in notebooks, on calendars and any notebook in my reach. I remember sitting on my couch before my first round wishing there was like a live in camp where my children could move and live during the 16 weeks. I knew it would be very hard on them to see me broken and tired and I just knew I would be broken and tired. You rarely hear of chemotherapy patients who are not...
I do not google my stuff - I know the danger of falling down the WEBMD hole and diagnosing myself with imminent death so I stay away from any thing that resembles web searches. I went in for my first round and watched in awe as the chemo nurses (who are all amazing) covered themselves head to toe just to sit and inject me with the red devil - the "A" in the "AC" combo chemo that I was going to get for the first 4 rounds; the second 4 rounds were Taxol.
Here are my quick tricks on getting through the interminable rounds of chemo:
I was lucky enough to get all of these rules in advance by someone who is my Guardian Angel - someone who went through it and was linked up to me by my treating hospital. She explained everything to me and even started texting me to get me to start drinking the water 3 days before my first treatment. I would not have survived chemo without her advice.
Do you have any hints or tips for chemotherapy?
Oh and after my first one, my 6 year old cried because he could not handle seeing me so tired and in bed early in the day. I worked full time through the full 16 weeks and only missed a few days due to complications. I did not have to spend any time in the hospital with fever, because I followed the rules, particularly rule number 6. I made my countdown with sticky notes on my wall when I had 68 days left until my last treatment and each morning would pull off a number. When your number gets small enough for you to see it visually, do the same if you would like - it helps you realize time is passing when you are in the fog of chemotherapy.
Cancer sucks. Everyone agrees with that - I do not think anyone would disagree. I have had people in my life who have fought and/or lost their fight to cancer (different types, though, as I mentioned previously I am one of the first people I know with breast cancer - or I was when I was first diagnosed, anyway).
When I was recovering from my mastectomy and lymph node removal surgery, my best friend from high school came to visit. She is definitely on my team. She and I have been celebrating our birthdays together since 1990; this past year was the big 4-0. On my birthday, I got a PETSCAN. It was fun. NOT. However, the results were fun because they were clear, which is all anyone who gets a PETSCAN wants.
I asked her when she was over if she wanted to throw a joint 4-0 birthday party a little later than normal - I ballparked it for June knowing I still had to go through chemotherapy. Just like always, she was in! She and I have been on one another's sides through high school and beyond - we took different paths in life but we never ever forgot one another.
Think about your life - do you still have someone who has been there for you since you were 13? If yes, you are very lucky. My crazy friend was even willing to have a big party with me and not get any birthday gifts from it.
We decided while hatching our scheme to celebrate turning 40 six months late to do it as a fundraiser for St Jude Children's Hospital. My best friend's dad lost a battle with lung cancer and I was feeling the shock of having a diagnosis (as my time between diagnosis and surgery was 17 days - though it felt like an eternity).
The party is coming soon but today, I got to go to a luncheon and accept a donation of $500 for St Jude in my name and as I was introduced (by my mom as she is an active member of this group), I was at first uncomfortable that everyone in attendance would know I had been diagnosed with breast cancer because people do treat you differently knowing you are or have been "sick" but it passed quickly because I realized that without this diagnosis, I would not be there collecting to donate to a hospital that has always tugged on my heartstrings.
I can say first hand that cancer sucks but no matter how much cancer sucks for an adult (and it really, truly sucks) it must be 1 million times worse for a child. To be a child and to have to undergo chemotherapy or surgery and to battle this disease is just absolutely the worst thing, in my opinion.
I have learned a lot through this diagnosis and living with the treatment for the disease - my priorities have changed, my perspective has changed. I went from being very focused on my children, career and self-promotion to just wanting to be healthy again. For me, today, being almost embarrassed by my body's failing has at the same time allowed me to do something small that is good.
I will continue to do small things for good as much as I can - I consider this blog a small way to share with others who are going through this fight or know someone fighting. I hope it helps in the time between...
**If you are interested in donating to St Jude, please do so by going to their website.
As someone who has been self-sufficient since (almost) birth - an oldest child who helped raise younger siblings from a young age and who has always been an "old soul" being in the position of needing help is akin to torture.
Unfortunately for me, though, being diagnosed with cancer meant help is needed. There are appointments and decisions to be made that young ears should not be privy to until they need to be told. Then there is surgery and treatment plans that need to be handled and trying to care for anyone other than yourself during chemotherapy is a joke.
Someone told me shortly after I was diagnosed that this would be the "year of you" meaning that I would now, for the first time in almost my whole life, have to put myself first and take care of ME.
As a mom for the past decade and a caretaker for others my whole life, this is not something I thought I could do and it was oddly freeing in a lot of ways. I went from being a helicopter parent to looking for people to take my kids out without me hovering nearby.
I learned to let go and just try to stay as well as possible, which is kind of a trick when you are getting poisons pumped into your body every two weeks. I would love to tell you the 16 weeks of chemotherapy "flew by" but that would be a lie (sorry but more on that soon on how to survive chemo).
There are people in your life that would surprise you - both pleasantly and unpleasantly and I know you would be as surprised as I was about who steps up and who runs away. There were the people who told me, "I will be there with you every step of the way." who then disappeared for months. There were those who told me straight out to just call them when I was done with treatment (and not before).
Then there were the people who just stayed - who if I did not answer my phone were at my door to make sure I was alive. I had a lot of pleasant surprises during my time as a newly christened "sick" person -this is just it, you go from being healthy your whole life and running everything to boom being broken down and unable to function or look in a way you recognize as you.
There are the people who stepped up from far away and who never let a day go by without just checking in on me - which means so much still.
Having those constants - the people who stand by you and just treat you like you and not like some weird infected alien is a blessing and it makes you realize how lucky you are - cancer or not, you are lucky. You have a team, people to help in any way you need.
The "in between" people are those who say, whenever they see you, "Anything you need, just call me." - those are hard to place and handle and not to diminish their words because I assume that is what I would have done if my acquaintance Sally (for instance) was the one who was diagnosed and not me. Sometimes I felt bad for not calling on them but I do believe as a "strong" person, I did not want to bother anyone.
So in the time between, I think about how I formulate my next life - because being super focused on family and raising my children is not enough to support my identity as friend, wife, business owner, teacher and more - I know I need to expand my horizons and figure out what will make me most balanced now.
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