5 Months Gone…

October 4, 2018:  5 months since my mother passed today and today would have been her mother’s (my grandmother’s) 94th birthday.  My mother was actually my age when her mother passed away from breast cancer. I was 5 and my brother was 3.  It’s really crazy to think about that and to then think that it has only been 5 months since she’s been gone.  On one hand it feels like forever, but then on the other hand it feels like just yesterday.  That probably isn’t going to make much sense to someone who hasn’t lost a loved one, but it is a very weird feeling.  Regardless, I miss her.

My mother had very specific wishes for when she passed.  She was always sort of planning her death. I know that sounds a bit morbid, but think about it from her side: both her parents and sister had died from cancer at young ages.  When she was diagnosed with multiple myeloma, although she was determined to fight, she knew what could be ahead of her and she wanted her family to be prepared and to know her wishes.  She wished to be cremated, which was the first in her and our family.  In addition, she wanted her urn to be buried next to her sister.  The gravestone below is in Connecticut and at a cemetery where their parents are also buried.

When I saw this gravestone I really didn’t have any feelings of sadness, believe it or not, but a rather peaceful feeling.  It’s something she wanted to happen and so it makes me happy to think she would be happy.  Each day I am trying to live like my mom did and be grateful for each moment I am experiencing. I’m also focusing on all of the happy times we had together and really focusing on creating new memories – just as my mother was always trying to do with everything she planned.

The picture below is one of many of my favorite pictures of my mom and me.  We were in Disney World and I was pregnant with my daughter, Kathryn.  This was in November of 2013 and a picture and memory that brings me such joy.  My mom had been through a stem cell transplant and was feeling really good.  She was looking great, feeling good, walking well and we were able to have such a nice time in Disney.

My hope is exactly what I know my mom hoped when she lost her mother and I was 5: to be my daughter’s best friend and experience life together.  I hope to one day have a picture of myself and Kathryn (who knows – maybe she will be pregnant with a little girl!) and we will be in Disney creating similar memories I will always have with my own mother.  Love you mom.

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More than a kid singing…

Words cannot describe how proud I am of my son, Mason. He just turned 6 and I’ve never heard him sing willingly for me because he’s normally very shy. I’ve always loved that he has been more quiet and shy and really introverted, but with that comes worrying that he may miss out on opportunities. I actually remember expressing this concern to his preschool teacher when he was only 3 years old. It’s amazing how in tune with our children we can be as mothers.

My mother in particular would have been crying tears of joy from this video because it’s so much more than just some kid singing. It is her grandson who she knows struggles with being shy and can be more sensitive than others, who is displaying a confidence in himself we have hoped he would develop at his school. I really hope that somehow she is able to see this because this would be exactly what we both hoped for for him and I know this is just the beginning!

Happy Birthday Mom …

My Mom would have been 65 today, September 26, 2018. Anyone that knew her knew that she LOVED her birthday and if you knew her you most definitely knew at the very least what month it was because she made sure everyone knew! And she really did love a party.

Many years we actually went to Disney World for my Mom’s birthday and to Mickey’s “Not so Scary Halloween Party” of course all dressing up and trick or treating through the Magic Kingdom (and this was PRIOR to having our own children 😂)! Being in Disney was my Mom’s favorite place and being with her family for her birthday was probably one of the most enjoyable times of my Mom’s life.

Here’s to you Mom! We remember you always, but today in particular we celebrate you remembering all those birthday trips to Disney and promising to get back there one September in the future for your birthday! Don’t forget to spoil each other silly especially on birthdays – that’s what Janet would do! Happy Birthday Mom ❤️.

Life is Different Now

After watching my Mother lose her life, obviously so many things change but one of them is how I view life in general.  Now, when I look out at the water or up at the sky I simply enjoy the beauty.  My Mother always lived her life this way and I assume it was because she lost both of her parents at a young age as well as her sister.  It is the way that we should all try and live our lives and we know this, but in our crazy lives it is hard – I know, trust me.

I don’t like to show the sadness I feel on a daily basis from losing my Mom especially in front of my kids, although I do talk to them and tell them it is OK to be sad.  I do, however, notice that they understand more than people would think.  They will hug me when they can tell I must be feeling sad or my daughter will put her arm around me and just let me take a moment like in the picture below.

I have a new found patience for my children and all I want is for them to enjoy life as much as possible just as my Mother always wanted me to do all my life.  Don’t get me wrong – my kids are 18 months apart and they test my patience like no one else has some days, but they no longer have their Grandma to run to and be comforted and spoiled by so I am choosing to step up my game.  Some may view that as me spoiling my kids or “babying” them, but in the grand scheme of things they are really only so young for such a short time.  My Mother ALWAYS would try and tell me this when I was stressed out with my kids and I would brush it off and say “I know, I know”, but now I feel I really know and understand.

Each day our children are growing up and changing.  Truly treasure the moments when they put their arms around you and hold onto you.  Take a deep breath and think “it doesn’t get any better than this” and remember that when they are driving you crazy!

Photo cred: @kateinthemix

More than just a first day of school drop off

Tuesday, September 4, 2018:

Mason started Kindergarten and Kathryn started Pre-K today. I know we always say this but especially today I felt it important to remind others that there is so much more to just a first day of school for a parent sometimes. Looking at this picture one might think today was just like all the other pictures parents are posting on social media and thinking how sweet. Behind that picture, there is so much more.

There I am at age 35 with my 2 little angels. Their first day back to school and the 4 month anniversary of my mother’s death. These kids have given me so much strength from before they were even born, but in particular on days like today. Last year during their school year, especially toward the end of my mother’s life we were trying the best we could as parents. Trying to get the kids to school on time, have laundry done, get them to birthday parties if possible. It was really hard. We were trying to juggle so much and keep things as normal as possible for the kids when really nothing was normal for us as we were watching my mother in her last weeks of life.

This year it’s now all about being able to be on top of things the way we wished we could have in previous years.

So today was a really big deal for us to have had all of our “to dos” checked off for the kids including getting them to school ON TIME. it felt weird to be honest because it actually felt easy (I know it’s only day 1 so I shouldn’t get ahead of myself!). The only focus was on the kids and not the kids and my Mom.

I was taken a bit off guard after drop off because I quickly realized that I didn’t have my mom anymore to call like I used to after I dropped the kids off. Every morning I would call her and tell her how drop off went. It’s what she lived for – hearing what her grandchild did or said. And then we would talk about what was on her agenda for the day, how she was feeling and when we would see each other which was most likely after school. It was something I always looked forward to and I never took for granted because I knew that one day in the future I would no longer have those conversations. I hadn’t done drop off for so many months that it really didn’t hit me until today how different it would feel afterwards.

I write about this because I feel like I’ve met other woman my age recently who have lost a parent not quickly but a sort of long and painful road and now they feel lost themselves. I don’t write to tell them it’s going to be OK because we know it will be and we know life goes on and as time passes, it will get easier. But I want them to know that they are not alone and I want to remind people that we all have our stories. Behind the pictures, there is always a story. Maybe it is a good and funny story but maybe there is also pain behind those smiles.

I smile while my heart aches, but I have made a promise to myself and to my mother that I will do everything I can to be the best mother I can be including getting my kids to school on time! I will also strive to live my life like my mother lived hers – as though each day could be her last.

Preparing for your surgery

1 Week Prior:

Obviously not all surgeons are the same and they will all have different preparations they will suggest.  I do not have a medical degree so follow your doctor’s suggestions, but this is what I did 1 week prior to my surgery:

  • Do not take any aspirin or ibuprofen. Tylenol is OK
  • Stop all supplements and do not eat or drink anything with ginger or garlic
  • Drink lots of water every day: 80-100 ounces
  • Get some comfortable clothes.  At least 2 pairs of comfortable pants that are not tight around your waist and underwear that are not too tight either. Personally, I made sure to have 3 loose fitting pants and underwear as well as looser tops. Your stomach will be larger due to the gas they put into your stomach in order to do this surgery.

Questions I had for my doctor were:

  • What if on an antibiotic? Stop or OK to keep taking? They said it was OK to keep taking
  • Can you still have your surgery if you get your period or must you postpone?  Yes you can! No worries there.

What to do the night before

Pack up

Shave (You don’t have to, but I definitely did)

Drink a TON of water to help with low bp if you have it and for hydration for your veins

Nothing to eat or drink after midnight

What to bring into the Hospital

Drivers License

Insurance card

Travel sized tissues

Notepad and pen for whoever is with you to write down what your dr says and for you to write down any questions

What to bring to the hospital but leave in the car:

I would just leave these items in the car you will be riding home in or bring them in with you if you will be leaving in a different car so that you have them accessible for the car ride home:

  • Slip On Shoes.  Just wear these to the hospital to make your life easier because it will not be so easy to bend over or pick up your legs to your stomach.
  • Throw up bag – This is for the car ride home in case you vomit.  Sometimes this happens to people with anesthesia.  
  • Advil – just in case anything were to happen like traffic and you couldn’t get your pain pills.  This happened to me 10 years ago – awful. 
  • Water bottle – nice and big water bottle for your car ride home. I was incredibly thirsty and so relieved I had thought of this beforehand
  • Tissues – it’s a very emotional day
  • Plastic bag for dirty tissues 😉
  • Pillow – you can leave this in your car in case the hospital doesn’t give you one of their own.  This is to have something soft for your stomach so the seat belt is not sitting directly on your incisions.
  • Heavy duty maxi pads. You will be bleeding afterward and the hospital will give you a pad but just in case

What to do afterward:

Begin a stool softener right away when you get home. Your body will be going though a lot of adjustments and add in pain pills to that and you could be dealing with constipation. Don’t add that to the list of things you have to deal with.

Rest when you get home but as soon as you start feeling “with it” a little, try and do some walking around your house. The gas they put into your stomach will cause you pain all the way up into your shoulders and walking and pooping helps to get rid of that. It can be really painful but please remember it will go away. A heating pad on the shoulders will help a lot.

Drink as much water as you can and make sure you are resting.

Excision surgery with an endo specialist is normally a much easier recovering than with a non- specialist but it is still uncomfortable. I personally didn’t take the pain pills because I know it contributes to the gas pain and causes constipation. I just took Advil around the clock but you do not need to do that.

Please contact me with any questions!!

Accepting the need for another surgery

Originally written October 4, 2017:

Mentally I was not ready to accept that I needed another surgery for my endometriosis.  I had my last deep excision surgery in 2007 which is just over 10 years ago, but I just kept hoping that the pain I was feeling was something else.  I had colonoscopies, went to Urologists, went to my regular OBGGYN and tried all different therapies – conventional and alternative.  It wasn’t until my Endometriosis Specialist told me that I needed to face my fears that I forced myself to look in the mirror and take a deep breath and decide to move forward with surgery.

I was going to wait until January or February because that is when it would be slower at my job and so I tried going on the birth control pill as a “band aid” until then.  For whatever reason, the pill created more problems but this time having to do with my bladder.  I had symptoms of a UTI but all of the cultures were negative.  I went to 2 different Urologists and they both felt it was hormonal and had to do with the pill and suggested it was endometriosis on my bladder.  I shared this with my specialist who told me that he sees many women with this kind of situation.  I didn’t know what to do because the symptoms were really interfering with my life.  Everywhere I went I had to make sure I knew right where the bathroom was, when I was driving I would get anxious if I got stuck in traffic because I could only go about 30 minutes and then would need to urinate again.

Unfortunately my mother has been fighting a cancer called Multiple Myeloma for many years and treatments have not been doing their job, so I decided I would ask one of my best girlfriends if she could take me to get my surgery in November rather than waiting until January/February. We worked it out around her schedule and mine with me thinking that at the time we were going to schedule it, my job would be slow enough where it would be OK for me to be out a week.  She was going to be able to help me recover and help my husband with the kids if he needed the help.

My mom underwent an intense chemotherapy treatment which did not work enough to give her much downtown and so she is going to go through a trial using immunotherapy (follow Team Janet Strong on FB to learn more about her journey if you’re interested).  If all were to go according to plan she would be admitted into the hospital in early November which meant that I had to decide whether or not I was going to cancel my surgery and wait until after my mom went through this trial, or schedule it sooner if there was a date available.

I called my Endometriosis Specialist, Dr. Masahide Kanayama at New York Endometriosis Center and I spoke to the amazing Medical Manager, Sabrina.  I let them know my situation and she let me know they had 2 dates in October available.  October 5 and October 12.  I was told this 6 days prior to October 5 and I wasn’t sure how I was going to make that work.  I would need to make sure it was OK with work, figure out childcare and figure out who was going to take me and take care of me for a couple of days afterward.

I texted my cousin and asked her if she could take me to the surgery in October. She immediately said yes.  She has always been there for me when I have needed her help.  I let my brother and sister-in-law know we would need their help with my parents should they need help – they said “we’re on it and will be wherever we need to be to help”.  And then there was my job.  I am beyond lucky – BEYOND – to be working for an amazing company where everyone let me know they were there to help in any way I needed.

I’m really lucky to have a family that has been through such ups and downs, but yet always comes together in times of need. My Aunt and cousin in particular were very blunt with me which is what I needed and said “you need this so that you can be out of pain and to be there for your mother.  Do it”. If they hadn’t just come out and said it like that I probably would have waited.

My life has been extremely challenging for quite a lot of years with a lot of unexpected “downs”, but all of those “downs” allow me to truly appreciate what is in my life today.  I don’t know if my family will ever truly know how thankful I am for their support.  I am a better person than I was 10 years ago with so much love and support in my life – I got this and will make sure to document how the surgery goes. I decided to go with December 12. At least it gave me a week to mentally prepare!