Update

First the sad news. My aunt Ria died on March 21. A few days before she died, she said “I will die when I am asleep surrounded by my loving family”. My sister said “like us?” She replied “You’ll Do” We were not there. But we believe that her mom, her aunts, my dad, Alexander and her cousin Peter (who died exactly one year before) were all there with her that night.
https://www.legacy.com/us/obituaries/name/maria-smith-obituary?id=54697254

Now for the good news. This week I met with the Medical Oncologist, and the Radiation Oncologist. They have both agreed that I do NOT need to have radiation! The main reason is that the area was so small, and they got it all during the lumpectomy. But, also, I have something called Neurofibromatosis type 1. (https://www.nfnortheast.org/what-is-nf/) (NF) Thankfully it has not affected me outside of some learning difficulties. The radiation oncologist that I met today, consulted with another doctor in Boston (a top radiation oncologist) and because of the NF, my chances of a secondary cancer from the radiation increases 10 fold! (it is about 0.02 percent in general) So because of that we are not going to go that route.

I will need to take a medication called Tamoxifen. I will be on that for 5 years. I am on two other medications – Welbutrin and Celexa. The Welbutrin can decrease the effects of the Tamoxifen, and the Celexa could have a side effect when mixed with the Tamoxifen. I sent a message to the doctor that prescribes them, but she is away for two weeks. Just as well as the Oncologist is away for one week. Really though, how RUDE of them to be away when I need them right now!! 😂😂

So back to the waiting game – or as we like to say “Hurry up and wait – then wait some more!”

Post-Surgery

My lumpectomy went well. They took 3 lymph nodes. They were NEGATIVE! That is great news! The first days after the surgery I was in some pain and very tired, which is all normal. Because I work in a school, I had the week after my surgery off, which was great for recovering. We had planned on going to visit my cousin in New Hampshire, however she was sick, so we had to cancel that. I did a lot of laying around and doing nothing. It was nice.

I had a follow up appointment with the surgeon this week. I am healing well. I have some pain, but it is mostly muscly pain. She gave me some exercises to do to help that. Later this month I will be meeting with the Oncologist and the Radiation Oncologist to discuss next steps. Because it had not spread to the lymph nodes, and it was so very small – 2mm – the surgeon said it would be considered a stage 1A.

I was talking to a friend about how unusual it was to find it this early and this small. I think that after the follow up mammogram, Alexander whispered into the Doctors ear “hey – why don’t you take a biopsy of this – just in case!” It is very good that they did, because it was so small. It is nice to have an angel looking over me. 😇

Nothing exciting

Nothing exciting to report. Surgery went well. The pain the first couple of days was bearable with medication. It is better now post op day 5. I am still feeling very tired though. No reports in yet from pathology. I have a follow up with the doctor next week.

Surgery Day

Going in for my lumpectomy in a little bit. Here is a link to some information about what is involved. https://www.mayoclinic.org/tests-procedures/lumpectomy/about/pac-20394650

I was suppose to have a “seed” planted on Tuesday. This is something that will help the doctor focus in on the area. However we were due to have a major storm! I called and they will able to arrange it so I would have something else done in the morning prior to the surgery. Well, it was the major storm that fizzled. We barely got a coating of snow that day! Sigh…oh well, the joys of global warming and living in New England!

Please send prayers, wishes, positive thoughts my way. Also send them for the Doctors and Nursing Staff who will be taking care of me.

Starting to sink in.

My uncle recently sent me this quote: Gilda Radner:  It’s always something. 

It is so true. The reality of my diagnosis is starting to sink in. Work has been rough this week. Trying to stay focused on the job, while thinking about the stupid cancer. In addition, there have been some changes, and I don’t always do well with changes, especially when they are (at least to me!) extreme. So I am butting heads with a co-worker (who doesn’t know what is going on yet). YAY fun!! 

I have been able to schedule my surgery for next week. It will be a lumpectomy. Prior to that I will have an MRI, they will plant a “seed” to help the doctor locate the spot, and blood work. The first week after my surgery, is school vacation week. Since I am working in a school, I will have that week off. I have sick leave I can take if needed. However, anyone who works as a teacher, nurse, caregiver, knows how it is. You care so much about the people you take care of, that you hate to leave them! But, as I told another teacher recently who had to take some time off “you have to put your own oxygen mask on first, then take care of those around you”

Prior to this diagnosis, I was planning on giving up Chocolate for Lent. I don’t think that will be happening now (especially since I have been eating my feelings the past two weeks!) But I do think God will understand. 

Fu*&* You Cancer!

Well – how do I start??? Right now my favorite aunt is dying from pancreatic cancer. She choose not to treat it, as there was no cure, and the side effects would be terrible. This is an aunt who I spent many weekends with as a child – going to Boston on the T, riding the Swan Boats. She came with my mom sister and I on a trip to California when I was a kid. Those of you local to the Boston area will remember the Rex Trailer/Sgt Billy commercials. https://youtu.be/Dj0ex5Wm5_o?si=JQpIwFLNtBoNtIBW

A few years later, I wanted to go again with one of their “chaperones” . I asked my parents, if I could save HALF the money if I could go. They said YES! I did somehow manage to save that money! They had stopped letting kids go without an adult, so my aunt volunteered to go with me! (She would later tell me it was for HER because she wanted to go back on the trip too!) We had a great time. We did two more trips on our own to California and several trips to Florida. She came with my family and my mom when we went in 2017. One night we sent my mom, husband and kids back to the hotel and she, my sister and I went wild at the park on our own! It was so much fun. Since Alexander died, she has made sure to send a Christmas gift for him every year. It is usually a special Christmas Ornament or a suncatcher of some type. We don’t know how much longer she has, but when she does die, there will be a big hole in our family. But I know Alexander and my Dad will greet her with open arms.

Now, if that wasn’t enough for our family…..A couple of weeks ago I went for my annual mammogram. I got called back for a “second look”. It has happened before to me, and it has been fine. Well, this time, it wasn’t fine. I had to go for a biopsy. If you think a mammogram is uncomfortable! I have always thought it would be better if they had you lay flat and have your breasts hang down. Well, that is what this test was, and it was NOT better!! A couple of days later, I got the call that no one wants. The biopsy WAS positive for cancer 😢😢 I was given a quick report on the phone, and then had an appointment yesterday. I asked the surgeon what “stage” it was. She said BARELY stage 1. It was caught VERY early – the MD said it isn’t often they find it this early as it is very small. The plan is to have a lumpectomy, and then radiation, then an oral medication for several years. 

I can’t say that my head is spinning – prob because of all we have been through with my dad, Alexander and now my aunt. It is more like it hasn’t hit me yet. I don’t plan on keeping a carepage or anything like that at this point. I do think I will update via this blog though. As for how often, I don’t know yet. My big thing is I don’t want a lot of sad eyes, oh poor you, God doesn’t give you any more than you can handle, blah blah blah. 

I am in between the “WTF stage” and “well, it was bound to happen at some point, but WHY NOW”!?!?! When I first met with the MD before the biopsy, I told her I don’t have time for cancer right now. A friend of mine was dx shortly after her son died from neuroblastoma. She said all she wanted to do was hide under a blanket and get it over with. That is kind of how I am feeling. I don’t want people in my face, but I don’t want people to ignore me either. I want people to reach out (but yet don’t ask what do I need) but I don’t want people ignoring me either. If you do reach out and don’t reply back right away, don’t get upset – I just probably don’t have the energy or brain space to deal with that in the moment. 

Until next time, ladies make your mammogram appointment, stop putting it off! And Fuck You STUPID fucking cancer. 

Holiday Season

These are two posts I have done in the past:

Have a Holly Jolly Christmas?

The Most “Wonderful” Time of the Year?

Holiday season is still really hard for me. It starts with Thanksgiving. We were in the hospital with Alexander. We thought he would have been home by then, but do to the major surgery he had we were still there. He was on a ventilator, and very sick. My mom had gone on a much needed break/visit to my sister in DC (although she did pop in for a quick hello as she went to the airport). A cousin came in for a quick hello as well. My husbands family were doing their own thing so we were alone. Being alone in the hospital on a normal day is hard, but being there on a holiday is just that much harder. We had one friend whose daughter was also in, but they were in a different unit and we couldn’t visit each other.  During Alexander time in the PICU he was very sick, his temp went up to 105 at one point and they couldn’t find out why. Even though it has been 13 years, that holiday still haunts me.

Christmas time is hard too. I remember the first Christmas we had two months after my dad had died. We were suppose to go to my Aunts house, but a snow storm kept us home. So me, my sister and my mom watched videos of my dad and cried. Alexander’s first Christmas was nice. He played the baby Jesus in the Christmas Pageant at Church that year. We had time at my moms house, then went to my husbands mom for family time there. Lots of smiles. He would be diagnosed with stupid cancer just 73 days after that. 

Christmas 2010 we were in the hospital. There was a Christmas party for the oncology children, my husband I did go over for a bit. But it was strange to be there without Alexander. Santa did make a visit and bring some toys for him.  On Christmas morning, the nurse knocked on my door and told me to not order breakfast, because a family had brought it for us. This was a family whose child had died a few years before. They knew how hard the holidays were, and wanted to bring us some cheer. Santa visited again that morning. Richard had to work the 3-11 shift, but we had a nice lunch with him and my mom and sister in the hospital. We made the best of what we were given. A couple of weeks before that someone knocked on our door. It was a neighbor who also worked at the hospital. She had taken up a collection for us and presented us with over $300 in gift cards as well as some presents for Alexander! I am usually on the giving side of such things, so to be the one receiving was very overwhelming!! The morning after that I went to check the mail or something, and found another pile of toys for Alexander on the front porch.

Christmas is a strange time for me. I want to be so happy for my other children, but I am always missing Alexander too. This year has been a particularly off year. My older daughter was very excited to put the tree up, but since then hasn’t seemed to excited about much. Usually we go and see Christmas lights a couple of times, and she hasn’t asked at all this year. This week she has been under the weather so that isn’t helping much either. I had a cold at the start of the week as well, so I lost a lot of motivation. As much as I dislike the snow, it just doesn’t seem like winter when the temperatures are in the 40/50’s up north! 

Many of my friends lost their children around this time of year, so my heart always hurts for them. This year, one friend lost their Dad just last week, and his wife lost her Mom 6 months ago. Hard to be happy at times like this.

For those of you who are struggling this holiday season, be kind to yourself Do what you can handle. If all you can handle is staying in bed all day long, then that is A-okay. 

Hugs and Love to all of you.

Age

Age is a funny thing. Older people often wish they were younger, kids want to be older. Is anyone ever happy with the age they are right now?

Age is a number – and a state of mine. I took care of a lady who was 104. The first time it snowed one winter, she was all giddy and happy! You would have thought she was 5 years old. When do we loose that joy? My husband has a distant relative who lived until 3 weeks before his 103 birthday! He was part of a group call The Wild Bunch. They were skiers who were “of advanced age” He skied into his 90’s! Now I am not saying I want to live to be 103- but if I can be as vibrant as he was, then it might not be so bad. I saw an interview with him once and he said “the secret to longevity is to always keep learning!!!” Not bad advice.

Often I hear friends say “oh why do the kids have to grow up so fast!” I think because Alexander died so young, I say “hurry up and grow up!!” I do enjoy each stage of their lives (although right now 11 and in middle school is tough on all of us! lol) But, really, every milestone they reach I rejoice! I am HAPPY they are turning the next age. I was HAPPY with J left elementary school to move on to middle school. They are GROWING UP like they are suppose to, and not stuck at Forever 21 months old like Alexander.

The Cookiegal is back!

It has been a LONG time since I have felt inspired to write anything – I will reflect on the past few years later. But for now, I will share this. The writing in blue is what my dear friend Pattie wrote to me in an email this week as we were talking about people we know who have cancer.

Yes, STUPID cancer is just that, STUPID and you know it all to well   I know the pain of losing Alexander never ends and at times likely even gets worse, but I am so grateful in so many ways that you have used your pain to help others.   You have taught me so much too from your cancer journey and I have used the lessons learned often and share them with others.  In fact just the other day.  I know of people who have lost loved ones or are in the midst of battling and others “ignore” them because they don’t know what to say or do.   Because of you, I DO know what to do…..be there, Whether I have words or not and I encourage others to do the same as I tell them about you. 

Alexander lives on in so many ways and still makes me smile when I see his little face on your page.    And you know what…..i just realized I thought of and brought you up just today!  I was at the post office and the clerk had a picture of Joey Middlemiss at her station.  I asked what was attached to his picture.  She said bubbles.   I laughed and said, yep, bubbles make everyone happy…..and told her about you and your blowing bubbles at stop lights LOL   Bubbles for Alexander always bring a smile  faces 

My reply:

Love this!!   While I HATE that I am able to “get it” with people, I am glad I am able to reach out to those who need it.  Last weekend we were at the Buddy Walk (DS fundraiser)  a large group had shirts on that said “In memory of Sebastian”.  I went over and asked who Sebastian was.  One woman said – he is my son who died this year.   I told her about Alexander – and let her know I was there if she needed to talk!  When we connected on FB, I noticed that I had written to her back when her son had died but she never saw the message.  ❤ 

When Alexander was sick, I followed a bunch of other kids.  When they all died I said “I won’t follow any more!”  Well, of course that didn’t happen!  They FIND me some how!   I now have a virtual friend in North Carolina whose son had NB.  I think I put him on the prayer list a few times – his name is Thomas.   He is doing well now (but has a TON of side effects from treatments and such)  She has messaged me several times, when things are tough and her friends just don’t understand!  

 She started posting about another family in Colorado -well, they actually LIVE in Wyoming but have to go to Colorado for treatment!    Her daughter also has NB (and I just now looked and her scans were CLEAR today!!!)  I have chatted with that mom a couple of times too.  

It was so scary and lonely when Alexander was diagnosed. When we first got there there was a little girl – I think 4/5, and a teenage. The parents of the little girl did say hello to us, but we didn’t talk much. The teenagers mom didn’t speak English, so we didn’t talk with her. We later found out that the cousin of one of my cousins wife, lost her daughter to NB.  She said she had thought about reaching out, but wasn’t sure since her daughter had died.  Oh how I wished she had!!!  Even though it was not a good outcome, I would have loved to have someone to share with!   I did make friends with other moms. And whenever a new kid was on the floor, I made sure I introduced myself to the parents. I remembered how lonely I was, and I didn’t want anyone to ever feel that way! Because we were ALWAYS there, I got to meet so many people. I say I have the best friends that I wish I never had, but I am so glad I did!

I am in the club no one wants to be in, and we can’t ever get out of!   I have heard of the “6th stage” of grief – finding meaning.  This is my way – I can’t change our lives, but I can help others now!

Have a Holly Jolly Christmas?

So the song goes, “have a Holly Jolly Christmas, it’s the best time of the year”.  Maybe for some….but as I talked about during our 1st Christmas with out Alexander it isn’t always easy to be jolly this time of year.

Alexander second and last Christmas was spent in the hospital.  He had been there since November 17th, and wouldn’t leave until December 31st.  We tried to make it nice. Samta visited.  We had a nice Christmas lunch.  But, really, how nice is a hospital room on Christmas?   Not too nice.

I was at a meeting of the Compassionate Friends last week and I was talking about how I was finding it very hard to be HAPPY and see the JOY of Christmas through the eyes of my two girls.   Julia especially is very excited this year.  She mailed off her first letter to Santa, and was so excited to help decorate the trees.  I bought this cute little thing for the tree. It is a Mouse holding a candle – you Blow on the candle and it turns all the lights on and off!  She is very happy about it.

I was saying to the group, that I think I am AFRAID to enjoy their joy.  I am afraid to smile too much.  Why?  Because, of the what if’s…..what if they get cancer and die too.  What if they get in an accident….what if and alien kidnaps them!  Okay, maybe not so much about the alien, but you get the point.

When you loose a child it changes you forever.  Part of your heart is broken in a way that can never be fixed.  I could have a dozen more children (YIKES!) and even then, I would still have that missing piece.  Nothing can repair that part of my heart.  Nothing.

This Christmas (and everyone for that matter!)  When you are getting stressed about wrapping presents, baking the cookies, and getting all your shopping done, please take a minute to just PAUSE and be thankful for all that you DO have.   If it gets too overwhelming, just STOP.  You don’t have to bake the cookies, or buy and wrap all the presents.  It will all just be okay.   Say a little prayer for for those in the hospital, those in the military who are far away from their families.  And say an extra special prayer for those of us who are brokenhearted.