Valerie

Yes, it’s really me! I haven’t given up on you all but life has a way of interfering with the best of intentions and i know, I know, I’ve kind of drifted away. I promise you the blog is always in the back of my mind somewhere amongst the debris.

How are you? I’m ………kinda mixed. It’s been an interesting year on a lot of fronts and it’s early into this one. On the day to day life stuff all is good. My kids, who are always here and about me, are well and the star of the whole production, Baby Jack, is well, becoming not so much a baby as a force of nature. He is more and more a boss baby everyday, but his cuteness is off the charts. Head coconut is slowly moving away from ER nursing and more towards aesthetic nursing. Come the end of the month she will be returning to full time work in that capacity, which is definitely a passion, and Jack will officially be in day care. Lots of changes for that little family. The downside? Well of course, less babysitting, but also head coconut’s intense focus on my face and her desire to fix it. I keep telling her I earned this mess and I’m not interested in a lip flip, whatever that is, or a filler here and there. If she had her way, I would look entirely different. So no, not happening but I love her enthusiasm.

Little coconut is a full time real estate agent in Southie or South Boston. It is hard to break into the market but she is dogged in her efforts and she is a hustler. She has moved into a grander apartment with her love, Sadie the dog, and a child hood friend. She has been incredibly helpful with the family and settling our dog. She is here most weekends and is very attentive to the baby and us.

How about me? Well personally things are good. We have added a new addition to the mix, because we didn’t have enough chaos. We adopted Daisy, our now beloved Golden Doodle and she is the sweetest, most gentle soul. Today she is 7 months old. Secretly I think she loves Tim more but more on that later.

Also on a personal level I have been thinking a lot about the metastatic breast cancer community. I feel a duty to give back on many levels for the incredible luck I have had and to that end, a desire to branch out a bit from Metavivor, my first love. I am of course, still all about Metavivor and raising money for desperately needed research, but this past year I became more visible about that. Last Spring, I was the Keynote Speaker at the Pittsburgh Metsquerade, a pretty thrilling experience. We raised a lot of money, and the coconuts accompanied me and Blanket.

Also last Spring I was asked to speak at the meeting of the Society of Nuclear Medicine in DC about a new GE Health product and tell my story, beyond fun. The room full of radiologists really hadn’t had much exposure to the patient experience before and it seemed to ignite them. Weirdly I find myself more and more comfortable with unscripted public speaking, go figure.

The Runway for Recovery here in Boston invited me and the coconuts to walk the runway this year! Probably the highlight of the year for us to be able to walk togerther. Runway for Recovery raises money to provide grants to families affected by breast cancer, especially kids. It is a monster organization, but they managed to send all 140 of us to individual stylists to choose our runway look and the day of the show provided lots of pampering with hair and makeup stylists before the show. There were only about 5 of with us Metastatic disease, but I think our presence is an important reminder. It was followed by a massive cocktail party, all at the swanky Westin Hotel in the Boston Seaport. It was a high, believe me. We will be back next year!

We took our annual trip to Aruba with my brother and sister-in-law which was heaven, followed immediately by a trip to NYC for a glamorous photo shoot and interview with New Beauty magazine regarding reconstructive choices after breast surgery— more glamour and pampering. I could get used to this! Not really, it was a long day of focusing and being present. Remember, I am 65 years old. Modeling in lingerie was not something I would have predicted, and I imagine my Irish mother is rolling in her grave. (That was probably sacrilegious?)

Halloween with Jack was a blast featuring a Main Street Trick or Treat with me and Nana. Jack’s so much more into the process and before you ask, he was dressed as Baby Shark. We lugged him around in a beach wagon and he had a ball. More Jack high jinks ensued at Christmas when the whole family took him to the North Pole to see Santa on the Polar Express. I live for this stuff and never in a million years thought I would get to experience being a grandmother with my terminal diagnosis.

Tim/Blanket and I ended the year of advocacy in San Antonio at SABCS. It was exhilarating and educational, I know, 2 words that don’t often occur in the same sentence, but it was. Lots of networking and meeting new people as well as getting to commune with other board members in person which does not happen nearly enough. We actually spent a lot of time chatting with other organizations committed to helping people with breast cancer and less time with pharmaceutical companies. I participated in a focus group and attended the GRASP reception. I recently became a GRASP Mentor (see—branching out) and followed San Antonio week with GRASP meetings to discuss the new research.

So….I have told you about the year in review highlights, supported largely by my family, so it’s time for the medical stuff which is always going on behind the scenes. I have had dizziness and balance issues due to adrenal insufficiency that has been ongoing since my hospitalization almost 7 years ago. The immunotherapy did more damage than we even knew. I have a lovely endocrinologist at Dana Farber who monitors me closely and is always on the hunt to calibrate my medications. Anyway, I had a not great reaction to the COVID vaccination, but I was determined to get the new bivalent booster before Aruba so off I went. That evening I became progressively sicker, with unrelenting vomiting, fever, chills, etc. By dawn I called it and off I went in an ambulance to the local hospital and was admitted. Much to my great surprise I had to stay because I was in Afib. I have never had heart issues, so this was new. I was started on a medication to address my heart rate and blood thinners. I converted to a normal rhythm eventually and off to a cardiologist I went. Yay, another doctor! He ordered a heart monitor that attached to my chest for 30 days of 24/7 monitoring. Such fun. They called me in NYC (remember the photo shoot?) to tell me I was in Afib while I was sleeping. WTH? I did not see this problem coming.

Consequently, my endocrinologist ordered a nuclear scan of my thyroid. The results indicated I had a large nodule on my right thyroid that was over producing thyroid hormone. This was likely to be driving the afib triggered by the vaccine. Following? Me neither, the solution was to have surgery to remove half my thyroid because the risk of stroke from the afib was too high. Okay I thought, I’ll do this after Christmas when I’m less busy.

Well, that plan did not work out too great when I was walking the dog the week before Christmas. We were both standing outside in the cold night air with Daisy and for some inexplicable reason, I fell, hard. Off to the ER again for X-rays. I had fractured the head of the humerous ( the top of my right arm) and was sent off to find an orthopedic doctor to follow up. I did, and he was a colossal jerk. Let’s face it, I interact with a lot of physicians and this one was unbelievably condescending. Without knowing my history, he said he didn’t see any fracture, and did I want narcotics? What the fuck? I was pissed. He took a few X-rays and still said I didn’t have a fracture (so why was I bothering him?). He ordered an MRI to shut me up and off we went. Of course, the MRI showed the fracture and worse, significant rotator cuff damage. I collected the report and the CD and cancelled my follow up with the jerk. I’m awaiting my new ortho appt. at Brigham next week. Remember people, ADVOCATE for yourself always!

Since I am unable to care for Daisy in the way I had before, I think she is changing her allegiance to Tim! That makes me mad, she is my dog! (Kidding).

While all this fun stuff was happening, onward we go. A quiet New Year ‘s eve at home with Bill and Carla and then surgery last Friday. They gave me the choice to wait with my arm and all, but I said no. I am writing this from bed as I recover from the not so fun surgery. My arm is feeling better, my throat is slit, what next? I do not know but I will always have the support of the people around me to help me find a way.

I am totally enjoying the FB request for people to recommend 12 books to me for the New Year. I ordered most of them after a little cherry picking from other people’s lists and am already on my third book.

My song choice, which I couldn’t copy into this, is Valerie by Amy Winehouse. Why? I loved Amy and was beside myself when she died. I saw her life documentary shortly before everything went south for me 7 years ago. I dreamt of her in my coma, trying to find her and help her in my altered state. I feel a personal connection to her as a result, and to Prince who died while I was asleep.

Full circle? I don’t know but I do know the only way forward is onward. Here is to less time in physician’s offices and more time out there advocating for those who can’t. I know I am one of the fortunate ones who has a loud voice, but I worry about the ones who don’t. Maybe some good will come out of my messy life.

Happy New Year from the circus. Xxx

6 comments

  1. So basically same old same old 😱 with your usual side of grace, humility and concern for others.
    So grateful for you my remarkable friend 💕💕

    Liked by 1 person

  2. Thank you for your update. Think of you often. Love to hear of your happy times and so impressed by the strength you have to fight for others. I had to laugh when I heard about your golden doodle as I just rescued a 3 yr old from a breeding factory in Oklahoma. She is nervous, sweet dog and quickly bonding with both Jeff and I and our older black lab rescue, but seems to be leaning toward Jeff! What the heck? I rescued you. 🤣🤣

    Take care, enjoy your family and keep us updated as we all wish you peace and joy! You are a very strong and special person. I remember our superintendent being very excited when he hired you!

    Nancy
    Past payroll mgr…EPS

    Liked by 2 people

  3. Thank you Barbara for advocate for us who can’t and using your loud voice for us how don’t. Your my inspiration and I’m a terminal cancer patient fallow all you can do for us who live with this devastated deases gives me a lots of courage to go on with this painful life!

    Liked by 2 people

  4. Holy crap Barbara! You have had one crazy thing after another. Hope you have a speedy recovery. That Jack is so beautiful!

    Like

  5. Glad to hear more of the details of your situation…speedy recovery! What a wonderful (and not so wonderful) whirlwind this past year has been for you! Love to see you out there doing you! ❤️

    Like

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