AQ vs. BC

Since it’s breast cancer awareness month, here is my PSA.

This photo was taken of me almost two years ago. I remember this day. I was happy because I had almost finished with radiation, surgery and chemotherapy were behind me, and my hair was growing back in. I was diagnosed with breast cancer at age 34. I felt a lump (which turned out to be a benign cyst) and my doc ordered a sonogram and a baseline mammogram. While cancer treatment was rough, it could have been a lot worse. That baseline mammogram saved my life.

Get your check ups, early detection is a good thing.

Much gratitude to the wonderful doctors and nurses who treated me.

My grandmother was the strongest woman I have ever met. I knew she wouldn’t live forever, but I thought she was going to easily make it to 100. This year when she was diagnosed with melanoma on her hand at age 91, I didn’t think too much of it, they removed it, and it looked like everything was going to be fine. Unfortunately it wasn’t fine, it returned in her lymph nodes. They did surgery followed by radiation. She powered through, driving herself to radiation every day. We talked 3 weekends ago, and she asked me if I had experienced extreme fatigue with radiation, she said she could barely keep her eyes open and she seemed concerned about it. I actually did experience exhaustion and I assured her it was a normal side effect. On that call she told me she was thinking about me all the time. She said that she was fine going through the radiation but when she thought about me going through it she told me “Al, it just frosts my tail, you are too young and I wish you didn’t have to do that baby.” Some people don’t know this about Mimi, but she was a very compassionate person. She was tough and could be abrasive, but she had a big heart and really wanted you to be the best you could be. If you fell and scraped your knee, Mimi would tell you to suck it up and move on, “toughen up” she’d say, but when you were really down for the count, she’d be there nursing you back to health or cheering you on.

I got the call from my Mom that I had been dreading. She told me if we wanted to get up to spend some time with Mimi, we should book a flight immediately. The radiation wasn’t working and the cancer had spread everywhere. They moved Mimi into a hospice facility in Falmouth, MA on Wednesday, May 15, and on Friday, me and my Dad and my brother were on a plane up to Boston after work. We arrived at JML Care Center on Saturday afternoon. My heart raced as I entered the building. I floated along the hallways until I arrived at Mimi’s room. I paused for a minute at the door and then went in. There she was, lying there with the sun shining on her face looking lifeless. I immediately started crying uncontrollably. I had never seen Mimi like this before. She roused herself up from sleep, pointed at me and said “None of that! No tears! Let me see those beautiful teeth.” I laughed and collected myself gripping her hand and gave her a big smile. “Good, you are here” she said. Her body looked weak, but when she took my hand she still had that same strong grip she’s always had. “My Al” she said. She kissed my hand and then I kissed her hand and a really sweet smile washed over her face. She kissed my hand again and I returned the kiss. “Oh Al” she said “We are going to have to call this thing off, or we are just going to go too far” her eyes welled up with tears for a brief moment “..well OK, one more” she said, and she tightened her grip on my hand and kissed it again. She was still Mimi, strong and sharp as a tack even on a morphine drip.

We spent the whole day there with Mimi. There were 12 family members all crammed into her room and friends streamed in and out all day. Mimi loved hearing all the activity around her, and she’d drift in and out of sleep looking so content and happy. People took turns holding both of her hands, she didn’t want to be left alone for too long. At one point I went outside to play frisbee with my cousins. Mimi yelled out the window asking us to slide over so that we were in view from her window. We were playing and laughing and I knew she was listening, I knew this is what she really wanted, for us to connect with each other and to be outside enjoying the beautiful day together. At one point the frisbee landed right below her window, I went to grab it and yelled “Hi Mim” through the window, she opened her eyes, smiled and gave me a little wink. We spent the day like this. It was a nice day, filled with love and light and laughter. As I looked around the room full of people with Mimi, I thought to myself, she really earned this, she spent her whole life connecting with people and giving of herself and it was all coming back to her, how nice!

As Mimi faded in and out of consciousness, she’d ask who was in the room, she was keeping track of everyone. We all took turns sitting right beside her and holding her hands. I sat back down with her, taking both of her hands and she opened one eye and complimented me on my earrings, this made me smile. I told her I knew she’d notice, so I tried to look fashionable. She looked at me with a big grin “You know me well babe” she said patting my hand. I told Mimi I was wearing her mother’s ring and her face lite up, she said “Oh I wanted to see that on you so badly” she grabbed my hand and looked at the ring on my finger “It’s right where it belongs” she said. She closed her eyes and grasped my hands, tears streamed down my face, but this time she didn’t order me to stop. I held onto her hands and let the tears drip onto my shirt.

Towards the end of the day the whole family got together and sang Edelweiss to Mimi, it was one of her favorite songs. Mimi actually sang along with us, she was smiling with the sweetest expression on her face, my brother was holding her hands and singing and he said she was right on pitch even though her voice was very faint. We did an encore and then said good night to Mimi.

The next morning we were waking up to get ready for another visit and my Mom got a call from my Uncle that Mimi had died at 7:55am on Sunday, May 19, 2013 (by the way, I have to say “died” because Mimi did not like the expression “passed away.” Say “died” or “croaked” or “kicked the bucket!” she ordered). I had been sleeping in Mimi’s cottage in Osterville with my Mom. I scanned her cozy little pad after learning she had died. Light was pouring in the windows. I walked around the place and noticed that the sun was shining right on her chair. My mom and I cried and hugged each other. I am so glad we were together.

The next few days became a bit of a treasure hunt as we found poems and readings that Mimi had tucked away in different spots with notes on them like “Love this. Use for me.” or “Please read.” We were looking for photos to create big collages and stumbled across a binder called “MY LIFE” filled with every wonderful picture of Mimi from the time she was a baby until the present.

We also found a letter addressed to all of us that read:

“To all my beloved children, grandchildren, great grandchildren and the wonderful persons they married- with all my thanks for the fabulous people you all are. How proud I am of all of you- each one of you is very special. Never have I accepted my angels Anne and Debbie leaving us so early- but I guess we all must be strong- Ted, Amy, Todd & Jillian- my heart breaks for you because I know how much they were a part of your lives. All of you my beautiful family- may your lives unfold with ease and grace- may you find joy and serenity and love and may all the opportunities you dream of be yours. I wish you happy endings, happily ever after- If you are all blessed with a family like mine, you will indeed be as happy and fulfilled as my life has been. I love you all so so very much. You have all made my life.”
-Mimi

People poured into the visitation on Wednesday, over 300 people must have come through. Flags were at half mast on the Cape. Mimi was loved. The funeral was the same, my aunt Lisa delivered an amazing eulogy and at the reception my mom delivered a lighter funny collection of “Mimi-isms” that had us all laughing. The surprise for me came from my cousin Kiley who fought back tears to deliver a heartfelt speech about Mimi. I felt overwhelmed by emotions. I knew Mimi would have been so proud of her for getting up and doing that, Kiley also said some of the things I wanted to say about Mimi, but most of all, I could see some of Mimi’s best characteristics in Kiley and it made me happy to see Mimi living on in my wonderful family. Get it Ki- you rock and PS. I think you are going to have to carry the Hannah Screecham torch, who else could do it!! 😉

I had actually prayed the night before Mimi died. I prayed for a lot of things, but I also asked Mimi to give me a sign after she died. If anyone could, I thought Mimi could. I don’t really believe in an afterlife or signs. I actually wish I had more faith, but I just have a big question mark in my head. Well something pretty incredible happened, we started noticing all kinds of signs all day long. First a sun halo appeared, it was so amazing and rare that it actually made front page news in the Cape Cod Times. Then we decided to walk down to the beach on Oyster Harbors where my Grandmother was a member and my brother and I spent many happy summers. My brother noticed that a clam had dug a perfect circle in the sand on the beach, also very rare and unusual! The last sign was pretty funny. My mom was with Mimi when the priest came to give her her last rights and Mimi made a bet with him that she had a son older than he was. She lost the bet, but didn’t have any money. She asked my mom to spot her a dollar and told her she’d pay her back. My mom only had a five and the priest took the money. My Mom and brother pulled up to the Oyster Harbors club to check out some logistics for the reception following the funeral and as they approached, Ty saw something blowing in the street, he opened his door and a five dollar bill blew over. Now, maybe we were looking for things, but I like to think Mimi’s energy was at work and she was surrounding us with love and light.

Mimi you continue to amaze me. I love you with all my heart.

I got a lot of notes from people with regard to #8 on my lists of twelve things I am noticing post BC treatment:

“8. I feel sad sometimes that I won’t ever be able to breast feed. I don’t have any immediate plans to have kids, but it still pops into my head at times.”

I have thought about it a bit more, and I think the underlying issue is that I am mourning the loss of a functioning part of my body that no longer functions the way it was intended to. I actually don’t believe that I wouldn’t be able to bond with a baby (if I have a baby that is). I feel like a part of my youth and vitality has been stripped away and it makes me angry/sad, but I am working on accepting things as they are. I can’t change it, so I’ve just got to be OK with it.

My mom is a wonderful person. Anyone who knows her, knows this is true. Everytime I write a blog post, my Mom sends me a really sweet, thoughtful, motivational, supportive, caring email. I thought I would share this note she sent me in response to my last post.

Knew you had posted, my girl – funny how I always do.  I guess because if I were in your shoes, today seems like the perfect day to reflect.  You’re not alone, Honey.  I hope you know that.  Some of these things you’ve mentioned to me, but some not.  As for the breast feeding, I completely understand how you feel.  In thinking of both my babies, Ty who I couldn’t breastfeed, and you, who I could, it’s funny, in looking back, I could not have felt a closer bond with either of you. The biggest feeding memory was of holding each of you close, stroking your little faces, playing with your hands and feet, singing or talking to you, rocking you, and just loving you.  Breast feeding vs. bottle feeding isn’t the real issue.  You just love, and if you and Jim decide to have a baby, you both will be wonderful loving parents, and if you don’t decide to do that, you are a beautiful loving couple!  I love you both so much.

I know you feel tired, Hon.  Physical therapy is really a great idea, and of course, your walks with Tiggy are the best.  I think increasing strength, flexibility, balance, and relaxation through an exercise program would be wonderful.  I should talk!  Here I’m paying a monthly charge at 24-hour gym and haven’t been in forever.  But I know it’s the right thing – I have no excuse. Finding the time for you and working around Mr. T is tricky. If there’s anything we can do, we’d be happy to.  Like for example if there were a couple of days you wanted to stay and exercise after work, DOD and I could go together or take turns coming over and walking and feeding Mr. T.  Of course, now that we have our shoes, there’s no better exercise than dancing!!!!  Let’s dance!!!!!

Somehow I do feel that Debbie and Anne are hugging you, Honey, and me too!  I feel like they are kindred spirits in the real sense of that word but sure wish they were here in the flesh. Unfortunately, Anne was never a cancer survivor, and honestly, Debbie really wasn’t either. They would be jumping for joy that you are, and cheering all the way for you!  Go, go, go!!!!

You know I mean every word of what I said, but there are just lots of emotions that I just can’t put into words but that I guess just come under the LOVE heading, and I do love you- ever so much!  How wonderful for us that we have such a loving mother-daughter relationship.  I wish so much that were a universal thing.

I love you with all my heart Ma.

Shell Collecting with my Ma on Craigville Beach. The best.

Griffin Girls. Love.

More Griffin Girls. More Love.

Ma and Deb. Sisterly Love. So sweet.

My last official day of active treatment for breast cancer was radiation on January 19, 2012. Almost a year later on December 11, 2012, I had final reconstructive surgery to replace the tissue expanders with silcone breast implants (I had to wait that long for the skin/tissue to heal from radiation before having surgery).

Here are some things I am noticing post treatment:

1. I still have lots of Dr. apt.’s and am being monitored by my medical oncologist, radiation oncologist, surgeon, plastic surgeon and gynecologist.
2. When something feels off (like when I was having stomach pains for about 4 months) they usually order tests. So I had my first endoscopy and colonoscopy in Feb. “Nothing remarkable to report” (aka. good news).
3. I am tired a lot. I have never been a morning person, but it’s worse now. I have really weird dreams and night sweats and I am super tired in the morning.
4. My radiated side is really tight and my arm mobility kinda sucks now. I have a script for physical therapy and need to make that appointment.
5. My left armpit is totally numb and it gives me the creeps when I shave it (oh and there is no hair on the bottom half of my left armpit).
6. I am now comfortable calling myself a “breast cancer survivor.” That sounded weird to me before, wait, it still sounds a little weird.
7. My self esteem is fine, but I do feel a little bit like a cyborg.
8. I feel sad sometimes that I won’t ever be able to breast feed. I don’t have any immediate plans to have kids, but it still pops into my head at times.
9. Recently I have found myself really missing my two aunts who passed. I can really relate to what they went through and I wish we could all give each other a hug and talk.
10. Breast cancer support is amazing and the connections you make with other women are incredible.
11. I am still not sweating the small stuff. It really doesn’t matter.
12. Good health, happiness and friendship are the most valuable things to me.

I have a card from my aunt Lisa on my bedside table that I look at every night, it says “Slow down, calm down, don’t worry, don’t hurry, trust the process.” This is a good reminder for me.

Random pic with some great girls.

I got in to see my medical oncologist Dr. Isaacs at Georgetown this morning to get the results of my follow up CT scan. Drum roll… the liver lesions are benign! One is a cyst, one is a hemangioma. Phew!

My parents came with me for moral support (it’s good not to go to these things alone, you may not even know how emotional it is). My mom and I were in the back with the doctor for a loooong time, leaving my dad in the waiting room to wait, and wait, and wait, and worry and start to hyperventilate (just kidding, he wasn’t hyperventilating, he was just pacing and imagining the worst). I sent my mom out to let him know things were clear and the relief just washed over all of us. Honestly, I could tell Dr. Isaacs was relieved too.

I also had my 3 month check up and elected to participate in a study that will help set up researchers to cure diseases (breast cancer and a host of other things), so I feel good about that. I did learn that the drug I have to take for 5 years (tamoxifen) is causing some weight gain, so I’ll be focusing on eating smaller lighter meals and getting out for more walks in 2013. I am not going to worry too much about the scale, instead I am going to focus on doing things that make me feel energized and healthy.

The scan also showed the fluid build up in my left breast and the radiologist noted that the scan indicates hemorrhage within the fluid. This condition is still being monitored and I am going to continue to wear a compression wrap to try to bring the swelling down. The good news is that the giant boob has gotten smaller since I started wrapping it on Monday. I went in for a second opinion with my plastic surgeon’s colleague and he told me, he’s “not impressed” with what he sees. Have you ever taken off your top in front of a man and had him say “I’m really not impressed with what I see here?” In this case the man was a surgeon and he was referring to the severity of the swelling. I knew what he meant, but it was a funny thing to hear.

Let the healing continue. Happy Friday.

Well damn. I was hoping I’d be rolling into 2013 with a new pair of boobs and all my major health problems behind me, and instead I am on antibiotics in a compression wrap monitoring a giant swollen boob.

Things were going well after my Dec. 11 surgery to exchange my tissue expanders for silicone implants and then all of a sudden, three weeks later, I went out to dinner with friends with a normal looking pair of boobs and returned from dinner with one normal boob and one huge boob. Seriously the left boob is twice the size of the right one. C’mon!

I won’t lie, I had a complete melt down. I am ready to just get to the end of this medical odyssey. I think I heaped on that New Year pressure too, New Year, new health problem free beginning.

So on New Years I got in to see the doc. She admitted that this was weird and she worried about an infection. So now here I sit in a giant pink compression wrap around my chest taking a 2 week course of doxycycline. The doc is hoping the compression will help the body to absorb the fluid that’s built up. Sonofa.

Since I am on a roll with complaints and worries, I’ll just go ahead and pile on that I have to go back for a follow up CT scan tomorrow morning to see what’s going on 3 months later with the 2 spots they found on my liver. I really had pushed this out of my mind, but now that it’s upon me I am letting those “what if” thoughts creep in and freak me out.

OK, one step at a time. Deal with this giant boob, get that CT scan.

My grandmother “Mimi” started taking special notice of Anna Quindlen once I became a Quindlen in 2007 (my father-in law is Anna’s cousin).

My grandmother called wanting me to read the January 2013, Reader’s Digest “Optimism Issue,” and in particular to look at Anna Quindlen’s piece called “Our Great Gift” taken from “A Short Guide to a Happy Life.”

I think I am going to have to grab more Anna Quindlen books to read. The short passage from Readers Digest is really beautiful. Anna describes what emerged for her after her mother’s untimely passing from ovarian cancer. She explains that “the lights came on, for the darkest possible reason.”

I can relate to this. Profound appreciation for life emerging from the jolt and shock of facing death.

For me, after the shock of the cancer diagnosis settled in, it was like everything unnecessary just fell away. It was nice. I felt that same calm feeling I get walking on a quiet snowy day. I started to allow myself to feel whatever I feel without judgement. Some moments terrified, some moments depressed, some moments peaceful.  I am learning that all these moments are OK, they are all just moments, the bad ones pass and there are plenty of sparking moments of wonder and beauty and laughter and friends and nature to appreciate. I am learning to cherish and cultivate these bright moments.

It’s easy to get caught up in the stress of our hectic lives, but we have to snap out of it. Go to a yoga class, inspect an anthill,  help someone in need, take a walk, doodle. Let go of things you can’t change or worry about things that haven’t happened, deal with things as they come and let that light flow in.

Anna says “I never think of my life, or my world, in any big cosmic way. I think of it in all its small component parts: the snowdrops; the daffodils; the feeling of one of my kids sitting close beside me on the couch…Life is made up of moments, small pieces of glittering mica in a long stretch of grey cement.”

That is nice. Thanks Mimi.

I had surgery a week ago, to exchange the tissue expanders I have had in place since my bi-lateral mastectomy was performed on June 15, 2011, with silicone breast implants.

The results. Good. Really good. Dr. Kathy Huang, of the Plastic Surgery Institute of Washington, is quite an artist, I highly recommend her. When they were cutting the dressings away I felt a little dizzy and scared, but I was very pleasantly surprised to see a nice looking pair of boobs! Of course, I think I have adjusted to the fact that I don’t have nipples yet (nipple reconstruction and nipple tattoos are the next phase of my medical odyssey), so the effect is a little more mannequin like, but that’s OK with me.

Over the course of the last year and a half the left hand side tissue expander had experienced a condition called capsular contraction. One of the side effects that can occur from having breast implants is a “capsular contracture” when an implant (or any foreign device for that matter) is inserted in the body, a tissue lining is formed. This lining is commonly known as a “capsule” or “tissue capsule.” It’s your body’s natural response to a foreign object. When the surgery is first done, a pocket is made for the implant, and during the healing process after the surgery, the fibrous tissue forms the capsule. Your body is genetically programmed to shrink this scar tissue somewhat, and in normal cases, the pocket stays open allowing the implant to look and feel natural.

In some cases (unfortunately in my case), the capsule will tighten and squeeze the implant, making it feel hard and distorting the appearance. Later on, the implant can feel very firm and can become painful. You are more prone to experiencing this condition if you have had radiation (which I did).

SO, given the tightened pocket on the left side and the risk for continued tightening on that side, Dr. Huang did some extensive work to open that pocket up. She cleared out a much larger area and was able to achieve symmetry between the breasts again.

What does all that mean? Well it means that my left side is sore, stiff, bruised and pretty uncomfortable, BUT, the boobs are symmetrical. (It’s better to look good than to feel good right?!! 😉

My hope is that the pocket is open enough now that I won’t get that capsular contraction on the left implant and that the movement in my left arm improves. Let the healing continue!

All in all, when I look at where I am now and where I was a year and a half ago, I am in a bit of shock. Did I really go through all that? Yea, I did, and I rocked it!

I think the key to getting through something big and traumatic is taking it day-by-day and enjoying the times when you feel good (yea of course there are bad times and you kinda go on auto-pilot and coast through it the best you can.) I really appreciated the little joys and accepted all the help and love that my friends and family showered on me. I feel lucky. I got to experience so much love and I now I appreciate beauty and pleasure in so many little places.

Here is a video that I look back on that makes me smile. Beware, you are about to watch some bad white people dancing (I swear I am actually a pretty good dancer- at least I think I am ;)), but it’s me and my dad enjoying the end of my last chemo session, before the fatigue set in. Go for it when you can!

I love you all. Peace.

Post Chemo Dancing

Here is a look at my complete hair chronicle, from shaving it all off, through chemo, and what it’s looked like growing back in.

I know there are a couple of people who have been stalking my posts on the hair regrowth to try to figure out how long it will take their hair to grow back. This will give you a general idea of what it looks like about a year out (but keep in mind I have cut it three times–yea it gets annoying and weird when it’s growing in and I am impatient). My hair is definitely thicker and maybe a little darker than before chemo.

Looking at these pics really reminds me what I have been through and how far I have come in a year…Damn.