Dear Mom, it’s 2024

It’s been about 4 ½ months since I saw you.

I still often think to myself “my mom would love this”, but I catch myself before I get the words out. I guess that is a start. I know you wouldn’t want any of us to be sad. But some days, it hits me from out of the blue.

I am sure you can see from Heaven, that Milo crossed the rainbow bridge a few months ago. That little guy LOVED his Grammie.

A month ago, we adopted a new kitty. The first thing I know you would have said is “look at those eyes!”

Marco Francisco!

He’s a skittish little guy, but he is making progress in the past month since he came home. “Kitten steps” haha. They said he was 1-2 years old but he is way too rambunctious to be 2. He is still growing up and a rowdy teenager.

Molly tolerates him most of the time, except when he tries to pounce her. You would be proud of your grandkitty sticking up for herself!! It’s funny because Marco backs down like a scolded puppy. But we did catch them laying near each other, and Molly groomed him this morning.

Another success!

It felt so amazing to rescue him from the animal control. He is very curious and very talkative. He also is silly and makes us smile.

You would enjoy talking about the weather we’ve been having. Every few days is a weird wind storm with deluges of rain and one real snowfall. It melted next day but it was pretty. I do miss sending you pics.

Marco napping after watching the snow fall

We missed you over the holidays. But we were able to all come together for Thanksgiving at S&D’s house, and brunch on Christmas Eve in Wallyworld.

Of course, we missed your stuffing, and Christmas cookie extravaganza!! Nobody makes them like you do.

Well it’s now 2024 and there are so many other things I want to tell you. I hope that somehow, you can hear me or my guardian angels can pass it along.

We love you and hope you are at peace and with the twins, daddy, and everyone else in Heaven. I love you and miss you. (And if you are able, I’d love to see you in my dreams!)

All my love, your youngest and coolest daughter❤️

Half of My Life = Our Life

Today is my 26th wedding anniversary. K and I have now been married for over half my life.

When we first met, it was on vacation. I was in Virginia Beach with my college roommate L, and K was visiting his cousin who was in the navy at that time.

It was absolute fate that we met. L and I were in a souvenir shop, looking at hoodies and such, and K walks in. We spent the next 20 minutes making excuses to stay in the shop. I ended up buying a pair of plaid boxer shorts with embroidered “Virginia Beach” on the leg, and finally walked out.

About 10 seconds later, K hurried out the door and caught up to us, inviting us to a corner outdoor restaurant for lunch. Although we had just eaten, I elbowed L not-so-discreetly and a little too enthusiastically said “sure!”.

In front of us was a cute outdoor pub called “Abbey Road” and we grabbed a table for three.

It was the beginning of a conversation during which we discovered a lot of coincidences.

* The fact that both of us were there in VA Beach by accident.

* The fact that we both originally were supposed to be in DC.

* When K offered to order drinks, he asked for Long Island Iced Teas, which at the time was my favorite cocktail.

…And so many more little things that collectively should have otherwise been a giant neon sign with arrows pointing to our table.

I can’t tell you how long we were sitting there. Long enough to have a few drinks and pretend to eat the nachos we ordered. It was March, and the sun was still setting earlier than later.

As dusk approached, L and I finally decided to take our leave. K asked for our hotel phone number. I gave it to him, and we met up with him and his friends the following couple of nights to hit up a comedy club and various social establishments.

From a Different World

K was so different from anyone I had ever met before. First, he was from the south. He had an accent, and was a true southern gentleman.

I was from southern New England, and had only dated people from pretty much the CT/NY/NJ tri-state area. K’s family lived in Arkansas, and at the time, he attended school in Missouri. He grew up moving frequently before he graduated high school, whereas I had never lived out of my home state.

The day we met

The Next Steps

After saying goodbye a few days after meeting and hanging out, my roommate and I drove the back up the coast to CT. Imagine my surprise when my phone rang that evening and K was calling from the plane.

“I just had to talk to you” he said.

That phone call was the first of nightly calls for the next 6 weeks. This was back when long distance calls cost extra, but you got a discount after 9 or 10 pm. We typically spent a good 3-4 hours on the phone nightly.

After the first month, we tried to cut back because we both got hit with massive phone bills, but we couldn’t stay away. In the meantime, K had sent me a care package with some fun stuff from Arkansas and also a special gift.

Though it didn’t seem logical, we were falling in love over the phone and letters. Oh, the letters! I’d write them during class, in between my school newspaper assignments, homework, etc. Practically every day, my mailbox would contain an envelope from Missouri.

Fast forward from the day we met to sometime in May – K was moving to CT. He had already been looking to transfer to a school with a good program for his major, and my school happened to be on the short list, amazingly.

Life Was Moving Quickly

That summer, K moved, transferred his credits, and found a job and apartment. With school, work, and dealingg with a major abdominal surgery (for me), life was busy.

K proposed to me on Christmas eve, almost exactly 9 months after the day we met. he had driving in a blizzard to meet up with my dad to get his permission first.

My prince and I on our wedding day

We got married on a crisp autumn day in mid-October. The changing leaves were still on the trees and cascaded over our day like cherry blossoms in the spring.

K knew about my Cystic Fibrosis, and yet he still pursued our relationship. Contrary to my lifelong fear that I’d share with my mom that “nobody would want me because of my illness”, here was an incredible man with talent, ambition, and above all, love, standing in front of me, pledging his devotion.

Half of My Life

I have now been married half my life to the living embodiment of my perfect half. We have been through a lot, and we always manage to find the joys behind even the toughest moments. Love like that is more than I could have ever expected, and I am truly humbled to be called his wife.

I love you!

I am so thankful for the love we share, and for every moment that has led to today.

It Takes a Village

So much has happened since my post.

If you read my previous post, you know that the the FDA approved the new CF medication for use in CF patients with at least on copy of a particular gene mutation. Known as “the triple combo” in CF circles and formally named “Trikafta”, it is designed to help up to 90% of CF patients.

The CF world has been waiting for this news, which was announced months before anyone expected. Since then, I have read dozens of stories by CF patients taking Trikafta that it is as close to a miracle as possible, without being a cure.

I began to read more and more social media posts using phrases like “life changing” and “second chance”. So my medical team submitted my prescription, and we were met with a swift “no”.

The insurance company was denying patients based on a “6 month wait period”, regardless of the patient’s need, or the medication’s presumed benefits.

Three Weeks Ago

I didn’t think much of it, because I had complete faith the decision would be overturned quickly.

As I was finishing my 3-week course of antibiotics, I was enjoying the most productive and energetic week I’ve experienced in at least a year. I achieved many small victories – I made it to all of my doctor and lab appointments, got to have a nice lunch out with Ken, had a movie date, and got my hair done (it had been 5 months). I also had begun Pilates again, achieving 4 days in a row.

That Saturday morning, I was up at 7am, cleaned the kitchen, ran laundry, and brewed a pot of coffee.

Ken had somewhere to go that afternoon, so I figured I would spend that time resting from all of my activity.

And then it hit me. Four days after finishing antibiotics, I spiked a fever and started going downhill. By the next morning, I needed 3 liters of Oxygen and had a 102.9 fever. i was becoming powerless over my lung infections, especially MRSA.

A few days later, I was admitted back into the hospital – only 6 weeks after my last hospitalization.

One Week Ago

Fast forward to last week. i spent 14 days on several antibiotics and very close observation. Doctors were stunned that I got so sick so frequently.

We had discussed Lung Transplant. My docs had told me “there is nothing else we can do for you”. So we had the official conversation even though they already knew of my decision. For reasons I won’t share, I have decided it is not for me.

We agreed on a basic plan, part of that including Trikafta.

I was discharged on my 48th birthday, just 2 days before my favorite holiday – Thanksgiving. I had been sent home to continue my antibiotics. We also scheduled sinus surgery for the beginning of the year, and a plan for suppressive therapy.

I was also neck-deep in appeals for my insurance to cover the new CF drug, Trikafta. My CF team and I had been fighting for five weeks to get insurance to cover it. Even my patient rep at Vertex, Trikafta’s manufacturer, was trying to push things through.

My Favorite Day of the Year

Amazingly, I was able to actually attend my sister’s Thanksgiving dinner – my first family holiday since last Thanksgiving.

I also have been able to cuddle with my babies while recovering from my hospitalization. It takes a while to regain strength after such a rigorous treatment regimen.

Meanwhile, I wondered how Tuesday’s fourth appeal would work out.

Six Days Ago

Imagine how dejected I was when the very next day, Friday, I received my fourth rejection letter.

Three Days Ago

And then everything changed.

Monday morning, my clinic called me to tell me that my insurance had changed their decision over the weekend, and that I was finally approved!

Tuesday, the specialty pharmacy called me to set up delivery, and on Wednesday afternoon, it arrived via Fedex.

The Start of a Second Chance

Today, I take my first dose of Trikafta. So many people played a role in this victory and literal second chance at life.

I am eternally grateful to God for guiding the minds and hearts of every person involved…

… on the clinical side, from scientists to researchers to doctors and nurses and pharmacists, my entire CF team, and my fellow CF patients who participated in clinical trials.

… on the personal side, from family and friends who encourage me, lift me up, and who know just what will lighten a heavy load (Snapple! Captains! Turkey!)

… and my forever love, Ken, who every day puts me first, who supports me and how I want to manage my CF, to working so hard and keeping us insured, for doing triple duty, to FaceTiming with him and my kitties every morning and bedtime when I am inpatient (63 days in the past 11 months).

There is also someone whose name I cannot share, but this very dedicated person will forever have my gratitude for the role they played behind the scenes.

Sometimes, miracles require a village – and I feel so incredibly loved and blessed to have mine.

Welcome Back to the Pink Perspective!

I’m back! I’ve updated TheraPink to reflect the changes I’ve gone through in the past couple of years.

For quite a while, I didn’t have any extra headspace to formulate sentences and paragraphs and cohesive content.

I’ve had a lot of time to think, however. Many nights in the hospital, sleepless yet exhausted, determined but drained, searching for motivation and the strength to do the things I needed to do.

I realized that life falls into three categories: Survive, Live, and Thrive.

It’s been years and years since I felt I was thriving. Our last real vacation was 12 years ago. I was still attending weddings and kids’ games and every holiday. I wasn’t the best housekeeper, but things were okay. Stable messy, is what I’d call it.

Then my body started going downhill. The emergence of Pancreatitis – now Chronic Pancreatitis – was causing a lot of pain, nausea, and some weight loss. I somewhere contracted MRSA  in my lungs and sinuses, that seemed to blow up after my second sinus surgery. We started to miss important friend and family events. Commitments became very hard to hold onto, because it seemed that every date we’d saved and event we planned to attend was ruined because I’d become sick and actually end up in the hospital. Instead of celebrating weddings, holidays, trips, and concerts, I’d wrestle with myself and torment my soul trying to make the right decision.

It seemed that when I did push too far, when I was sick but “sucked it up” and attended, I’d always pay the price. Getting sicker more quickly. Ending up in the hospital only days later. I had distress that I made the wrong decision. The enormity of how poorly I felt physically often overshadowed the experience itself.

I was still living. I still cooked, cleaned haphazardly, and kept trying to be “normal”. But I needed more and more help from Ken. I was on more medications. I was sick every 4-6 weeks, and my gut issues (Pancreas, especially), became more persistent.

Then came survival. When you are forced to think or exist minute by minute. at first it is the only way to cope. Can’t do a day? Try an hour. Can’t do an hour? Try one minute. You can do anything for one minute. This became my mantra, my way of existing.

I was so far from thriving, and certainly didn’t even feel like I was living. I went to some scary places, physically and emotionally.

Ken and I became obsessed with finding our way up. We had to seriously advocate for me with my doctors and the hospital. It is easy to fall in the cracks these days, with so many people needing care and health resources at their limits. But we made the choice not to roll over. I was NOT going to give up.

So here we are right now. Trying to get back to the world of the living.

Surviving is not enough. Not for our souls.

So begins a new phase of our lives. Thankful for the opportunity and time we have been given, we owe it to ourselves and to God. We are taking back control. What the rest of our journey looks like, I have no idea. Where we’re going?  No clue. But we’re ready to do more than just survive.

Waving the White Flag

Tomorrow, Tuesday, my doctors are admitting me for severe lung infections due to my cystic fibrosis.

Interestingly, it has been eight months since my last admission. I have been taking oral antibiotics to treat my MRSA infections, but after three months and several courses of these antibiotics, my lung function continues to drop and I continue to be actively sick. Aside from the MRSA, I have a handful of other bacterial strains that often Colonize CF lungs.

What stinks is that every time I go on antibiotics, I would start to feel a bit better, but within a week of finishing my 2 to 3 week course, I get sick again. I have to say it’s really hard to know when to wave the white flag and admit to my doctors that yes, I do need their intervention.

I will get a PICC line IV (long term, semi permanent) inserted into my arm or chest, which allows medication to go into my bigger veins were they won’t irritate the smaller veins closer to the surface.

The PICC line is usually a double lumen kind, which means that there are two tubes entering my vein so that I can have two medications or fluids running at the same time.

I will likely be taking a cocktail of three IV antibiotics, each with their own schedule.

Considering one of my medications runs for 12 hours a day, there are two other medications that have to run on their own schedules, and I usually receive IV fluids 24 hours a day to protect my kidneys, both IV lines are close to constantly being used.

Hence is the typical process of the 2 to 3 week hospitalization for a CF lung exacerbation.

It’s uncomfortable on so many levels, it can be painful, I get a lot of undesirable side effects, and I become sleepless and invariably stressed out. I feel bad for my nurses and my physician team because I get very emotional when I’m inpatient.

Depression and anxiety make things worse, as it does for many CF patients. Imagine being stuck in a 10 x 10 room, being allowed to leave the room only when scheduled for a test, having to eat, sleep, and do everything else from a lumpy bed in a tiny room with a window that often faces a bleak city scape. Oh, and going no longer than 10-20 minutes without someone walking into my room.

Despite all of the things I can and often do go wrong, however, I know that I am going inpatient to get better and to slow down the progression of the past few months. I am to the point where even getting up to shower by myself is a huge challenge, let alone being able to do do anything like cooking or cleaning or the basic stuff that people do when they live their lives.

So for the next few weeks, I will be doing everything in my power to stay calm and sane. I still have this option in my arsenal, so I am thankful. Not ready to think ahead to a point when no more antibiotics work for my bugs. Until then, I continue to fight.