It’s all so broken.

Our “Democracy” is now bought and paid for by billionaires who want control for their interests and foreign actors with the same motives.

I’m sad to say but, I don’t believe it will be fixed in my lifetime. I’ve seen the results these people have had on what should be our great hope. The younger generations. Where we should have nurtured better critical thinking, it was treated as if it were a flaw.

History? What’s that quote about those who are doomed to repeat history? Well, this cult mentality simply decided to cease teaching our history. Remove and ban those books. After all, we wouldn’t want little Billy Bob to know what great granddad did during the time of lynchings.

Sex? Pregnancy?Abortion? Oh my! Those books must go too! We don’t want little Suzy to know that no, uncle Jack shouldn’t be having sex with her at age 12 or EVER! And that yes, she can have him arrested and god forbid she gets pregnant? She has options! Or at least in some states she does. But there was a time she did in all states! We most certainly don’t want her reading about that. Keep them young, dumb, pregnant and future republicans.

Civics? Do they even teach that anymore?! How our government is supposed to work? The constitution? Does anyone actually care?!

I know public health has died. Ironic. It was a raucous ceremony. Attended only by the conspiracy theorists.

Healthcare in general? I don’t even know where to begin. The insurance companies that pay executives HUGE salaries and bonuses yet, have actuaries decide what they will or will not cover. An algorithm or if you’re lucky, on appeal, a health care worker (not necessarily the specialty in question) will review your claim. You’re ill and now expending ridiculous energy (you don’t have) fighting with your insurance company. For a drug or procedure you absolutely need. Not want, need.

Then we have the healthcare workers who feel it beneath them to actually include their patients in their own care! Nothing is more egregious to me than an arrogant physician or nurse. Your patient asks you to mask? Put a mask on. Your patient asks for an explanation they can understand? Stop, take a breath and think about how you might explain whatever it is in simple, layman terms. And make sure you accomplished the task at hand. “Have I explained this in a way that helps you understand it better?” Don’t stop until you get a yes! Very few patients understand what “you have calcifications in the LAD.” (It’s a potential widowmaker depending on other clinical presentations but…..a cardiologist should take a look pretty quickly.)

If the patient has underlying conditions and is uncomfortable in a crowded environment, try to accommodate them given health care providers REFUSE to enforce mask requirements. A crowded ED waiting room or hallway (the new waiting room), full of coughing people with No masks is not a safe place for the immune compromised or immune suppressed. Unless of course, you’re trying to develop repeat business.

Given I don’t have any solutions, yet. I’ll leave you with this. There was a time we removed smoking from indoors because of the risks associated with second hand smoke. Christ, they even have signs prohibiting it from hospital parking lots. The first step was the “smoking section” in restaurants. So why not have “vaccinated/mask” sections in hospitals, restaurants etc. To me, Covid/RSV presents a far more immediate and significant threat than second hand smoke. So why not address it? As for second hand smoke? I’m not around it much at all but were I to encounter it outside? I’d simply put a mask on.

Oh, one more happy thought. It’s going to get worse come January. Buckle up Buttercup.😱

#Mask

#Covid

#Thedaydemocracydied

Friday will be the first treatment of my last cycle of chemotherapy. And let me tell you, it’s been a bitch.

When we began, I had a long conversation with my oncologist. I was fairly disappointed with the treatment options available for my type of cancer. And I let him know that I felt there was a failure in the oncology community regarding research for my type of cancer.

He apparently took that conversation to heart. I received a phone call from him that evening explaining that he wanted to change the treatment protocol. It would be pretty brutal but, he felt it would be more effective.

I had told him my goals were 1) LIVE 2) Save the hair if possible. But obviously, live was most important.

He hadn’t misled me. This has been absolutely brutal. The nausea and fatigue getting worse with each treatment. I’ve lost about 50%-60% of my hair. Thankfully, it’s just “thinned” so far and there are no blatant bald patches. I do have a wig if I feel I need it but, I’m just focused on getting through treatment right now.

Had it not been for the amazing care from my team at the Winchester Cancer Center, I think things would be very different. They thankfully, have remained keenly aware of my MS and treated me accordingly. Including hydrating me 3 times a week.

It became very clear right away that I couldn’t stay hydrated. And they responded beautifully. Proactively. The way medicine should be practiced.

I’m also so incredibly fortunate to have a best friend like Terri Maguire who basically just stepped in and took over managing all my care. Including driving me to most of my appointments and taking care of myself and the dogs every day. I honestly couldn’t have done this without her. The hours she’s had to sit in the hospital or the cancer center are ridiculous. As my healthcare proxy, she’s had a couple of scares. The worst being when they tore my sub-clavian artery. I, was blissfully asleep. And had no knowledge anything was wrong until I woke up and saw the look on the surgeon’s face. Terri, unfortunately was aware of what went wrong and what the possibilities were. I was thankful she had been there in that situation. I know she was frightened but she doesn’t panic. And that, is a trait you need in those situations.

Terri built her house next door to me about 24 years ago. Something she is so regretting right now. Thankfully, she loves that house.

And I have to also thank Katie McGinness who once was an adorable 3 year old who just wanted to hang out and play with my dogs and now is an amazing young woman who stepped up to help Terri when needed. All those years with the dogs paid off. She’s been able to fill in with the dogs when needed. She’s an amazing dog handler in her own right now.

Terri also recruited two of her sisters to help. Karen, who stayed with me in the hospital during and after my lung surgery as well driving me a couple of times for treatment and Linda, who despite being allergic to dogs drove me to treatment a couple of times.

It takes a village.

Through it all, I’ve been less than useless. On the verge of needing transfusions a few times. But as my neurologist said “We can deal with your MS later. Treat the cancer!” And we have.

Terri and I were both taken aback to hear my oncologist use the word “curative” when talking to us one day about how bad the treatment was. If true, it’s obviously worth it. But, there’s never a guarantee with cancer.

I’ll finish my treatment on May 11. I finish with the treatment that really wipes out my red blood cells. So, I don’t know how long it will take to start to feel like myself again.

I have so much I want to do. Start working out again, begin respiratory rehab, eat normally, drive! Just live my life again.

Do I know the cancer can come back? Yes. I will have PET scans and actually won’t have my port removed until after the first or second PET scan.

Do I worry? Somewhat. But, I can’t control it. I’ve done everything I could do. And I don’t believe in worrying about things I can’t control. If it does, I’ll deal with it then.

I just know I’m almost done with this chapter. The rest is still unwritten.

When I was diagnosed with lung cancer, I thought sure, this is going to really suck but, I had no idea.

What was an incidental finding turned out to be far more serious than anyone thought. Even after all the initial testing. And it wasn’t just lung cancer. Of course it wasn’t! Once they removed the actual lung, they found granulomas they still can’t explain. And I’ve now been tested for some pretty interesting diseases.

But here’s the thing, this experience has shown me just how deeply flawed our medical system is. A system I worked in for many, many years. Yet, something has changed. It is now failing in so many areas.

I began by having my surgery which was a left, lower lobectomy with a small wedge resection of the upper lobe.

When I initially awoke in the hospital, I actually was surprised by the fact that I was on room air, not oxygen and I was breathing fairly well. I was well medicated and comfortable.

The next day, Walker was brought in as planned and we settled in for the 3-5 day hospital stay.

I actually was doing okay until….the night nurse was called to assist me going to the bathroom. I had a chest tube, IV, and portable cardiac monitor.

The night nurse began yelling, flailing her arms and berating me about Walker. “That dog doesn’t belong here! He’s in the way!” My friend who was staying with me in the hospital pointed out to her that none of the other nurses had any issues with him getting tangled in any of the equipment. She continued yelling. This continued through the night until….during one trip to the bathroom she actually began to fall herself because she was so effusive in flailing her arms. Walker immediately swung around and blocked her fall. The look on her face was priceless as she said “Is that what he does?!” I just muttered “yes.”

The same thing happened the next night with a male nurse who also decided it was appropriate to berate a patient. Personally, I consider it abuse. And, I should note, arrangements for Walker were made well in advance of my being admitted. However, it turns out, they moved me post op to the wrong unit. They offered to move me to the correct unit on day 3 but, I knew I would be coming home and the damage was done.

But, what went wrong? Why was I moved to the wrong unit? Why wasn’t I told right away? Mistake one which led to the abuse by the night nurses which were mistakes 2 and 3.

I was discharged on a Thursday evening. I had made a plan with the surgeon regarding pain management based on my prior surgical history. I explained this to his fellow who was discharging me. I told him specifically what pain medication was to be prescribed.

A wheelchair was brought to the room, my friend made multiple trips to the car to pack all of Walker’s things and then finally we left. It was 7:30 pm. No pain medication was dispensed to take home and the pharmacy closed at 8:00. Meaning, I had no pain medication until the next morning. The night was absolutely brutal.

The next morning a friend went to pick up the prescription only to discover it was the wrong medication. It would have been great had I broken a toe. But, I just had half a lung removed. It was more than a tad painful. I cried. I called the surgeon’s office and because an ill informed pharmacist gave the PA false information, I was told they couldn’t correct the prescription. Mistakes number 3 and 4.

I spent 4 days in absolute agony and my condition deteriorated. What’s been lost in the discussion about the opioid epidemic is the importance of proper pain management in recovery. Especially when you’re recovering from something like lung surgery. Without proper pain management, you can’t move! You can’t breathe! You need to move and breathe to assist recovery.

Finally, the visiting nurse arrived and intervened. She called the surgeon on Monday and explained that proper pain management was required. Finally, I was able to obtain proper pain control. But, I had to return the other medication to the pharmacy. That’s fine and it should have been done 4 days ago!!!

So now, I was basically starting over in my recovery. I had just spent 4 days basically whimpering and nothing else.

Mistake 5? Telling the patient who can’t take NSAIDs to take Advil! Repeatedly! Read a chart!!! Listen to the patient!!

Thankfully, my friends rallied and set up a schedule to take care of me and the animals. Honestly, much of it is still a blur. The day of my surgery, my best friend who was going to be with me in the hospital tested positive for Covid. I damn near had a heart attack. But, she already had her sister who I love, on the way and ready to fill in. And she was coordinating the other issues that needed to be addressed. Thank God!

The recovery has been much more difficult than I anticipated. I actually ended up back in the hospital last week. (A different hospital) I had become extremely dehydrated and they had lowered my pain medication a bit too soon. During a snowstorm, the young man (who is like family to me) noticed I was not well. He thankfully reached out to my best friend and said “If you can’t take her to the hospital, I’m taking her now.” He was right. I was admitted. But, what you may be reading about our hospitals being overwhelmed? It’s true. Patients in the ED in the hallways waiting for rooms. Sick patients. Wait times are a minimum of 6 hours. To be seen! Then you get moved to the hallway. We even saw patients who arrived by ambulance triaged to the hallway. It’s abysmal. And it certainly isn’t how we should be practicing medicine in this country. We’re not a third world nation!

The one shining star was an ED nurse named Melinda. She was outstanding! She knew medicine and she knew how to navigate the system to get things done. We were so grateful for her.

The other shining light was my PCP. It is extremely rare for PCP’s to round on their patients anymore. Most simply leave inpatient care to the hospitalist. Not mine! I woke up and outside my door was my PCP gowning up to come in to see me. I wanted to cry. He said he had been seeing all these notes about me and was getting worried. He was going to call and then he saw I had been admitted. So, here he was. What did I need? How could he help? And that is why HE is my PCP.

I explained that I had been fighting to get my iron infusion and that the cancer center had ordered it and they too were trying to get it done. I asked if he could help. He said he’d look into it. And eventually it did get done but not without a snarky night nurse commenting “I don’t think she even needs this.” To which I replied “Interesting, I didn’t know they offered hematology fellowships online.” Dead silence. (She had received her BSN online)

After being tested and cleared for everything they were concerned about and getting everything under control, I had to fight to get discharged. Why? CMS billing. If you’re on Medicare, they need two after midnight stays to bill for an inpatient stay. Less, they can only bill for “observation.” Sucks for them. I signed the document that stated it was “observation” so I could be discharged. I honestly didn’t want to stay given all the people without masks and the rooms marked “Droplet Precautions.” I would prefer to avoid respiratory infections.

Once home, I still felt lousy but, better. I have had days where I’ve wondered about starting chemotherapy while feeling like crap. But then, I realize I do feel better every day.

I damn near died when I saw the surgeon’s PA for my post op last week and she said I was doing better than most of her patients. Dear God! What must they feel like!

I’ll be getting the port placed in a couple weeks for chemotherapy.

I had originally planned to “cold cap” to try and save my hair. It turns out, it’s incredibly uncomfortable and many people still lose much of their hair. So, I’m just going to go with it. It’s going to be a bald summer. I’m extremely upset about it but, I will get a wig and I’m sure I’ll find other clever options for head covering.

As for what happened in the first hospital with the nurses, I did file a complaint. The charge nurse for the unit reached out personally and we had a constructive conversation. I have received a written response from the hospital which I honestly haven’t read yet. I don’t want to stress myself if it’s simply a “form letter.” I’ll read it when I’m feeling stronger.

And I am starting to feel stronger every day. It’s just much slower than I expected. And I honestly couldn’t have done this without my friends. Especially my best friend Terri who has been taking care of the dogs and me.

Terri and I have known each other for over 35 years. 25 years ago she decided to build her house next door to me. Something she is so regretting right now.:) Thank God, she loves that house!

I don’t know what the future holds. The cancer was staged as stage 3 which surprised everyone. Nothing showed a year prior. They actually already changed the chemotherapy protocol to something more a bit more aggressive. I do know, I intend to do everything I can do to fight this.

If you ever smoked, ask your doctor for a low dose, screening CT scan. It’s now covered by insurance and could save your life. This is fairly new so you may need to push a bit but, it’s worth it. Much like breast cancer, screening and early detection are important.

Regarding our failing healthcare system? We need to address it. How? We need to be more vocal. We need to speak up when we encounter mistakes.

Every hospital has a patient advocate. Some are effective, some less so. But, it’s a good place to start. Every state has licensing boards for physicians and nurses. Complaints can be filed with both. Every hospital has administration that includes a CNO (Chief Nursing Officer) and usually a Chief Medical Officer. Write them directly with any concerns. If we don’t start speaking up, it’s not going to get better.

Am I aware of staffing issues? I am. But, that doesn’t give a practitioner an excuse for practicing poor medicine that impacts patient outcomes negatively. It’s medicine not auto repair.

I’ll keep everyone posted as I continue on this journey. Just don’t expect any bald pictures. That’s not happening. That’s the one aspect of this I’m still not okay with.

#LungCancer

#Badmedicine

I was just settling in to celebrate my 7th anniversary post double mastectomy. I’d received my annual breast MRI. It’s rather amusing, this breast MRI has lead to some interesting incidental findings in the past.

One year, a new lesion was noted on my liver. With a history of invasive breast cancer, that of course set off alarm bells. A scan was done and it showed to be cystic. However, in the course of that scan, a mass was noted in one of my kidneys. Good lord I thought, if we keep scanning, just how low can we go? That actually turned out to be something we follow.

This year, the report came in, I opened it, read it and was extremely happy that all was well with the breasts. And then……Those pesky other findings.

A 1.9 cm spiculated mass was noted in the left hilum. Meaning, a really not great type of mass in a former smoker was seen in the middle section of the left lung.

I swallowed hard. These were the times I wished for ignorance. My head swam. Why? You smoked, you idiot. Hadn’t I had enough? Such a myth. I went back and re-read the report. No lymphadenopathy seen. Well, that’s good. And it’s small. My surgical brain kicked in. Thoracotomy with a wedge resection and it should be fine. A CT was recommended to confirm the finding.

True to my nature, I made a plan. I’d need a CT and if positive a bronchoscopy. Being immune suppressed, there was no time to waste. Of course, it was Friday evening but, I began emailing my doctors. Let’s get the CT scheduled asap. And I informed my PCP and requested input for who he thought would be best for a bronch.

By Monday afternoon the CT was scheduled and my PCP had referred me to a pulmonologist who had already called me to schedule an appointment.

I then also spoke with the pulmonary oncology nurse at the cancer center who very graciously offered any help she could provide. Everyone at the cancer center where I already have been a “frequent flyer” was absolutely shocked by the news. But, they couldn’t have been more supportive and kind in offering any and all resources they could provide.

I’m incredibly fortunate to have such a fantastic team of physicians and nurses. And I recognize that. I recognize how fortunate I am as compared to most people who have to battle our failing health care system. To be honest, I too have had to fight a number of battles. And I often think about how people who have no medical knowledge can possibly do it. I’m keenly aware of the problems and the need to address those problems. But, that will have to wait for another time.

The CT was done. The report arrived literally as I went to look for it. The results were not good. But, I noted some glaring errors the radiologist made. It was sloppy. There’s no room for sloppy in medicine in my opinion. I would ask my surgeon to have it read by someone else and to let me see it myself.

When I met with my beloved breast surgeon, she was way ahead of me. Have I mentioned she’s an overachiever? Not only had she had it looked at again but, she had an interventional radiologist look at it with her. We discussed what they had concluded and then she and I looked at it. And she agreed, the first read was sloppy. She would request the report be amended.

What I saw and what she and the interventional radiologist saw was in fact, problematic. Given my history of being a former smoker, most likely lung cancer and not metastasis from my breast cancer. Let the fun begin.

I then asked the funniest question I think she’s heard in some time. “Does our cancer center have cooling caps? We have to save the hair.” She stopped, looked at me and said “Can you, for once, take this one step at a time?” I told her no. And she should know that. I may not be working anymore but, I’m still type A and I need a plan.

We agreed that given my immune suppression, time wasn’t on my side. We needed to act quickly. She assured me she would take care of it. I explained I’d already spoken with the thoracic oncology nurse and she was standing by to help as well. Coincidentally, my PCP called twice while I was in my appointment. Have I mentioned how fantastic my team is? They are rock stars.

Within 2 hours I had appointment with the interventional pulmonologist who was recommended for tomorrow morning. She will be performing the bronchoscopy. That’s when they’ll biopsy this pesky mass.

There are a few of lessons here. Surveillance and or screening saves lives. Were it not for that MRI, this wouldn’t have been found until who knows when. I’m not symptomatic. We need to do a better job of that.

Have a great team that you trust starting with your PCP. If you don’t like them or feel you can’t communicate well with them, find someone else. If you ever find yourself in a critical situation, you’ll be grateful you did.

Be your best advocate. Ask questions, take notes, ask for options. No, you may not have my background but, you can ask to have things explained in a manner you understand and communicate in a manner that works for you. If you feel you’re not getting the answers you need, ask again.

I’m going to be fine. Worse case, it’s going to be a really shitty winter. But I assure you, this isn’t my final chapter. I’m far too hard to kill. And I now have a legitimate excuse to not clean the house. “Sorry it’s dusty, I have cancer.”😎

Today is Wil’s 10th birthday. 10 years ago, this amazing girl came into the world. She came with a purpose. A mission. I sincerely believe she was destined for me, her job and our journey together. I believe she was mine from the moment she entered the world even if we hadn’t met yet.

Her early life wasn’t easy. It was said she had HOD. Looking at radiographs and what little clinical information I could get, I believe she actually had severe Panosteitis. Either way, she was lame for a significant portion of her puppyhood. And therefore rather discarded as a potential service dog.

When the agency she came from did try to work her, they said she was “timid”, fearful and generally not easy to work. She was also extremely under weight. All a result of her beginning.

When I happened upon her when visiting the agency during the matching process she was in her pen. I saw a gorgeous young mantle. With soulful eyes that spoke to me. I entered her pen and she immediately jumped on me. Pinning me to the fencing. She stared me down. And I knew. I just knew.

I told the trainers I wanted to try that mantle. They explained she had some “issues.” I was undeterred. I wanted to try working with HER. And so, we did.

Off to the mall. Harness on, leash on, into the mall. I told Wil’s “Heel” and she did. She walked confidently through the mall. Never missing a step. Never shying from anything or anyone. I turned and asked the head trainer “What exactly are her issues?” Both trainers were slack jawed. They said this was not the same dog they had been working with. I looked at Willow and I smiled. She had found her partner and I, mine.

It was decided that I would be paired with Willow. I was “warned” about her “HOD.” I did the requisite on-site training with her and then we were off. A paired team. Off to start our new life together. And what a life it became.

Willow came home and I learned immediately that she did in fact have some issues. But, not any of the issues they mentioned. She was confident, happy, eager but, she was not well trained. First thing out of the car? She decided to chase a squirrel! A mobility dog that chases things?! Not okay! And she had no recall. She had chased the squirrel across the street, into the neighbor’s yard and was now trying to get in their shed! Thank God, my neighbor was home. She grabbed Willow by the collar, brought her back and said “Missing something?” While it was amusing, I realized that significant training was in her future.

She settled in beautifully with all the other dogs, cats and birds. As if she had been raised with them. From the minute she walked in the door, she was home.

After obedience training and working with her on not chasing small, furry creatures, she blossomed into the most amazing service dog. She was smart, confident, reliable, friendly, and oh so clever. Too clever, at times. Which earned her the nickname Monkey Pants. As a service dog? She became unbelievable. Big, crowded theaters? No problem. Shotgun shooting? No problem. I was told “Great Danes aren’t gun dogs.” I beg to differ. Kids running up to her unexpectedly? Well, it turns out, kids are her kryptonite. She absolutely adores kids and puppies. A child approaches and the tail goes a mile a minute. The feet start the happy dance. So, I would always allow her to interact with children and use it as a time to educate the kids about service dogs. She was truly the best. And no dog will ever truly replace her.

Willow and I learned together about being disabled and the ability of service dogs to provide independence, safety and their ability to re-open the world that so often you close off when you become disabled. Willow caused me to become an advocate for disability and service dogs. To become an educator. Willow actually has an award for EMS educator of the year. Her name is on it. We took our first flight together as a team. Willow flew like she’d done it a million times before. Me? I was medicated. She pulled my wheelchair through the airport with pure joy. She loved it! She could go fast. And fast she went. TSA pat downs? Those are attention and an opportunity to give an unsuspecting TSA agent a big, Great Dane kiss. She got to hang out in the pit in a Las Vegas casino while I played cards. Again, she was just thrilled with the attention. Mommy who? She was adaptable. Except for grass. Turns out, she absolutely will not relieve herself on astroturf. Her other kryptonite? Chicken. If we ever spoke at an event serving chicken, I had to watch her like a hawk. I once caught her out of the corner of my eye, sneaking leftover chicken off a plate at a luncheon. In front of Maura Healey, I had to quietly stick my hand down her throat to extract it and slide it back on the plate. Hoping it wasn’t noticed. God help me! Monkey Pants! The then Chief of Police for Salem had noticed the entire incident. After, he laughed and said “That was the best thing I’ve seen in quite a while.” She certainly could entertain.

Because of Willow I also met one of my dearest friends, Renee. We met while I was in the matching process and she was visiting the agency with her service dog. Sitting behind her, I kept staring at her arms. These amazing, well muscled arms. I tapped her on the shoulder and asked “Where did you get those arms?” I had no idea the beautiful dog at her feet was her service dog or that she had Parkinson’s. But, an amazing friendship and partnership was formed that day. Renee and I went on to educate and speak together as a team. And I value her and her friendship beyond measure. Without Willow, that never would have happened.

So, Willow truly is the OG. The GOAT to me. With those soulful brown eyes, pinning me against the fence, she spoke to me that day. And she told me “I’ve got you and I’ve got this.” And she did.

Happy Birthday Wil’s! There are no words to adequately articulate the love I have for you.❤️❤️❤️

Forty five years ago today, I gave birth to a beautiful baby girl. 12 lbs. 11 1/2 ounces. A head full of stunning red hair and the most perfect ivory skin. She was simply gorgeous. No words can adequately describe the love I felt for her.

Forty five years ago, I gave up that beautiful baby girl for adoption. I did so to ensure that she had the best possible life. A life, I as a teenager, was ill equipped to provide. To this day, the most difficult and painful decision I’ve ever had to make. But, the best one. One that was not made in haste but, was made thoughtfully.

Today, I spoke to her mother. I have spoken with her mother every year on her birthday since the day that beautiful baby girl contacted me on her eighteenth birthday. We speak at other times, as we really do enjoy each other but, always on her birthday.

This conversation was different. Today I learned the sad news that her husband had passed away. After a long illness, he had lost his battle. They had been married for 56 years. 56 years. My heart broke. But, I immediately realized and told Sandy, the fact that they had been married for 56 years, reinforced my belief that I had made the right decision 45 years ago. They had provided the most wonderful and stable life for that beautiful baby girl. She had been surrounded by love. She never wanted for anything. And she was loved. And continues to be. It was exactly what I had wanted for her.

I thought about how fortunate Sandy was to have had a wonderful husband for 56 years. Who loved her dearly. How fortunate that baby girl was to have had such a wonderful father who thought the sun rose and set on her. And how fortunate I was to have had such a wonderful man become my baby girl’s father.

Rest peacefully Paul. Thank you for taking such good care of my baby girl and being such a wonderful father to her. Thank you for raising her so beautifully. And thank you for loving her so deeply.

You are and will always be missed.

There’s a saying in medicine that when considering a differential diagnosis, you should “think horses, not zebras.” Meaning, look for the most likely. The most common. Does a Zebra occasionally trot in? You bet. But, horses are more common.

I’ve often thought about this over last two years and how it applies to me and all immune suppressed patients. We’re NOT zebras. But, for some reason, during this pandemic we’ve been treated as if we’re actually not just zebras but the even more rare, black footed ferret.

We.Are.Horses. There are millions of us. Millions. And the medical community knew we existed when this pandemic began. Yet, we have been treated as an inconvenience. A “well, what ARE we going to do about THOSE patients?”

ONE major study was/is following these patients and their response to the vaccine. ONE institution. ONE!

ONE drug was FINALLY approved to treat these patients who, surprise, surprise, didn’t respond to the vaccine. Two years into the pandemic! Was there previous information to indicate these patients would not respond to the vaccine? Yes. Was there simply what I like to call “scientific common sense” indicating they wouldn’t respond? Yes. No immune system, no response to a vaccine. Particularly with B cell therapies.

All of that information and one drug receives EUA. And then, the Federal Government only orders 700,000 doses! For the nation! For millions of patients that need it! They estimated 7,000,000 patients need it. That’s 1% of patients being treated!

Today, it was announced that the FDA recommended doubling the dose of that drug. Now, you’ve cut the 1% in half. And those that have already been dosed (me) need to receive an additional dose as soon as possible. Will it be available?

I was thrilled when I received Evusheld. I felt relief, finally. I had my first dinner out with actual humans in two years. Now, I’m back in limbo. Now, I wait again to find out if I can receive the medication I need to protect me from this virus. And so do millions of others.

We are NOT zebras. We are horses. And much like the wild mustang, we have been failed by those who should have been protecting us.

It’s time for the medical community and the Federal Government to put us equally at the forefront of any public health crisis.

And for those who still don’t want to vaccinate? Who think public health initiatives are somehow infringement of your freedom? You’re petulant children. And I sincerely hope you never have to face a significant health crisis. But, if you do? You’ll find no sympathy here.

#TheForgotten #Evusheld #Vaccinate #Immunesuppressed

Two years. That’s how long I have served in solitary confinement. My crime? Being immune suppressed during a pandemic.

I didn’t choose this. I didn’t actually commit any crime. Dear God, I know of actual criminals who have received lighter sentences. But, because I need a very strong B cell suppressing drug to treat my MS, it left me extremely vulnerable at the worst possible time. And because the immune suppressed population is apparently not at the forefront of the minds of the medical community, we were forgotten. Left to wait, hope, wait, hope, wait and finally realize we would be the last to be addressed.

I still harbor many feelings about how the medical community have handled the immune suppressed patients during this pandemic and continue to do so. None of them very positive. We are NOT disposable. We should NOT be forgotten. And we certainly shouldn’t be last on the list of patients to address.

WHY are resources being spent (wasted) on those who refuse to vaccinate, mitigate and participate in public health policy? When in fact, those very resources (financial) could be funneled into finding and producing treatment for the immune suppressed patients? Patients who HAVE been vaccinated but, due to immune suppressant medications, the vaccine fails to work. WHY?!

Instead, immune suppressed patients are forced to continue to isolate. To remain “forgotten.” After TWO YEARS!

Approximately 6 weeks ago, a drug called Evusheld was finally released in Massachusetts. It’s a monoclonal antibody treatment that’s used to treat immune suppressed patients. It provides six months (maybe more) of protection against the virus for those that haven’t responded to the vaccine. Two injections, administered on the same day and by the next day, you’re good to go. The problem was, it was extremely limited.

I reached out to my doctor the day it was released in Massachusetts. Her response? The physicians had been directed to submit the names of their patients who were over 60, on B cell suppressing treatment and they would be notified as to who could receive the treatment. It was basically a lottery system. A lottery system for a medication that could finally free us from two years of isolation. Are you fucking kidding me?! How could this possibly be true?!

My anger seething, I began writing. I wrote to the Governor. He of course, never responded. I wrote to Astra Zeneca, the manufacturer of Evusheld, they never responded. I even tried to contact a couple of the researchers of the drug. I wanted answers. WHY were we an afterthought? WHY was this so difficult to manufacture? WHY was this NOT available for every patient that needed it?!

To this day, I have no answers. After all, I too, am one of the forgotten. And it’s reflected in their lack of so much as a reply. Or perhaps, it’s because they have no answers. Perhaps, they actually don’t know why they took so long or why they can’t make it more available. Perhaps, they’re just ashamed of themselves and they should be.

The good news is that yesterday I actually won the Evusheld lottery. I received my injections. It’s still difficult to articulate my feelings. I awoke to this weird sense of relief yet, I still have some trepidation. And I’m still filled with rage. Two years of rage.

When I was receiving my injections I was speaking to the PA who was injecting me. We were discussing the supply issue. I actually said “Well, now I can park my ass in person on the Governor’s desk until I get an answer.” He laughed. He doesn’t know me. Because I just may do that.

Yes, I finally got my “freedom” but, there’s still so many “forgotten” patients who we need to continue to fight for. We can’t allow them to be left in isolation when their only “crime” has been to be on an immune suppressant. To have a disease that required treatment.

If you or someone you know is immune suppressed and hasn’t responded to the vaccine, please ask your doctor about Evusheld. And don’t stop asking. This treatment needs to be available for every single patient that needs it. Change only occurs when you make it happen. Let’s make it happen.

#TheForgotten

#Evusheld

#Covid

#Vaccinate

It’s here. The precipice of the new year. A year I thought I would be celebrating with people. In person. Like we use to do. Complete with actual physical contact. Ahh, those foolish dreams. Or more correctly, those foolish people. The ones who have kept us in this nightmare. The anti-vaxxers. The science deniers. The selfish little people who simply couldn’t see past themselves.

January 19 marks the TWO YEAR anniversary of the day I purchased my first box of masks. I actually began locking down. Well before the rest of the country. My doctors and I had been following the data and knew what was coming. And we knew I was at high risk. It was decided that I needed to be prepared and safe.

In February 2020, I began lockdown more intensely. People were starting to pay attention but, it was getting comments such as “It’s just the flu.” Meanwhile in Europe, they already knew it wasn’t anything like “the flu.” China had actually provided the RNA of the virus to US in December/January and work on vaccines had begun. It wasn’t “the flu.” Yet, when the first cases were reported, our idiot in the WH proclaimed it would disappear. It didn’t. But, it set a dangerous precedent for those that believed whatever came out of that administration. It set us up for disaster. And that, is exactly what has occurred.

We all know the economic impact. Supply chain issues etc. But, there’s still the human element. I am an example of the human toll. And I’m not alone. Not by a long shot.

As an immune suppressed patient, I have developed no antibody response to the vaccine despite three full doses. Being immune compromised, that leaves me at extremely high risk. Therefore, my only option is lockdown. In the past 22 months, I haven’t stepped foot into a store, a restaurant, movie theater, nothing. The only places I can go are health care facilities and those are limited to essential in person visits only, such as infusions. I did recently attend a veterinary appointment with accommodations for my dog but, only because I knew every member of the veterinary hospital was vaccinated and masked. I also did not go through the lobby or interact with the public. Would I do it now? Probably not.

So what have I been doing? First, trying really hard not to form a group to rise up against those that got us here. Because yes, I DO blame them. Had people simply vaccinated, worn masks, distanced and prevented the spread, we wouldn’t be here. And that, is a fact. That, is science. And I wouldn’t still be locked down.

I’ve also been trying to remain sane. Living in isolation isn’t healthy. It isn’t. When you have physical issues and then you add the pleasure of trying to maintain mental health, things get interesting. Sour dough bread? Hard pass. I’ve set the oven on fire. Twice. Knitting? You can stab yourself with the knitting needles. Probably not the best idea. Sewing? Seriously?! I suture, I don’t sew. What am I going to make? A prairie dress? Now, if some deep skin lacerations appear, I’m in.

I did start out immersed in medical journals. Reading everything about Covid, designing a treatment plan should I contract it and following all the research. It was fascinating. Then it became depressing. I realized I couldn’t continue to do this.

I also purged my house. And I mean purged. I threw out and donated things I’ve since looked for only to remember, I’d donated it. But, I have no clutter and it was so cathartic. It was so extreme, at one point the dogs appeared worried. I think they feared they may be next.

My latest obsession is science and skin care. Not just slathering goop on your face but, what science is there to support making change in aging skin. Having access to medical journals, it’s become fascinating. I’ve experimented on myself and while some experiments have resulted in me looking like a trauma patient, it’s been interesting. Unfortunately, or fortunately, my face is hidden behind a mask.

I am still following the journals regarding Covid but, not as obsessively. What has encouraged me is the latest information regarding the newer treatments that hopefully will be available in the near future. Monoclonal antibodies to treat infection that actually are effective against Omicron and monoclonal antibodies to be used proactively in patients like me to protect us from infection. There’s even an oral treatment much like Tamiflu that’s been approved. Right now, access is an issue but hopefully, that will change Q1 2022.

So where do I go from here? Well, I actually have upgraded to a KN95 mask. I will continue to remain locked down until it’s considered safe. Which could be some time. I’m hoping to be able to access the monoclonal antibody treatment for patients like myself that developed no response to the vaccine but, thus far, we haven’t been able to obtain it.

Please understand that even with these treatments, we will still be living with a pandemic for probably two more years at which point we will transition to an endemic. That’s actually important. And you can impact that timeline. Vaccines, masks, distancing, anything that helps prevent spread.

I told my doctors when this began “I’ve survived Cancer multiple times, I have progressive MS, seizure disorder, AVMS, am anemic and god knows what else. I’m certainly not going to let this bullshit take me out.” And I stand by that. What I didn’t realize was the price I was going to pay to do so.

I look forward to the day I can safely hug my friends again. Safely step into a theater, a store, a casino. Until then, I will continue to try and remain sane. Try not to slap the idiot with their mask under their nose. Try not to haul off and just belt the selfish little twat who doesn’t believe in getting vaccinated. But if I do, thanks to my research into skincare, I’ll look fabulous in my mugshot.😉

Happy New Year!!

My dear friend Renee has prodded me for years to write a book. Renee is a “word nerd.” She’s actually written and published books. She has that creative brain. Me? I don’t have that gift. I have lived an extremely rich, interesting, challenging and sometimes excruciating life that yes, could fill multiple books but I haven’t been able to find a way to tell the story. How to start? What to say? How to make it meaningful?

Yesterday it hit me. I was watching The Today Show and someone was talking about breast cancer. She mentioned the one word that hit me like a lightning strike. Grief. Grief is a common thread.

We all experience grief. And for me, it’s been ever present in my life. I watched as my childhood friend, Sandy Sagoian was struck by a hit and run driver. Literally, having her hand pulled from mine. I was 6 years old. She survived only to be killed by a drunk driver a few years later. A guy on a motorcycle. It unfolded as I watched again. 30 feet away. Helpless to do anything. I was 10. Grief.

As a child, I watched as my mother struggled with health issues. I once returned home after babysitting to find her in a coma. She survived only to finally succumb to her disease when I was 14. Grief.

At 16 I gave birth to a beautiful baby girl. I had carried this child for nine months. Loved this child. Talked to this child every day. Seeing her when she was born, I was so taken by her beauty. But, I wanted the best for this child. A 16 year old was not equipped to provide that. So, I gave her up for adoption. To this day, it was the most painful decision I’ve ever made. It was also the best. But it came with grief.

I recently wrote about the murder of my friend Jane’s brother, Jimmy. While not my brother, I was deeply affected by that experience and the grief that surrounded me. And I experienced grief as I cared deeply for Jane and her parents.

In my late twenties I became pregnant again. An ectopic pregnancy that almost killed me when it ruptured. But worse? It robbed me of any ability to have children going forward. Grief.

Being diagnosed with cancer multiple times while frightening, didn’t really bring grief until I had to undergo the double mastectomy. Losing my breasts? Grief.

The reason I finally focused on this was because of a question I often am asked regarding my MS. And honestly, it took that moment of hearing the word to put it together. People often ask me how I was able to deal with my diagnosis. I explain that it was a grieving process. I literally went through a grieving process that took about two years. I had to grieve the loss of my career, my mobility, who I was before. And I had to learn to embrace who I was now. They often ask how I knew to do that. I didn’t really have a good answer before. I thought because of my career in medicine I had been exposed to chronic illness, death and dying and therefore understood grief and grieving.

What I now understand is my life prepared me for it. I had learned about grief. About grieving from a young age. I had learned through those difficult experiences how to grieve. How to take each step in the process, to put the pieces back together. And I’ve learned that we don’t embrace grief as we should.

Grief and grieving are extremely important if we’re to heal from trauma. To deal with the unimaginable losses we may encounter. We must learn to take the time to immerse ourselves in our feelings. Validate them. And then, we must learn how to use those feelings to help us accept our lives and move forward. Because grief is healthy. Grieving is healthy.

In closing, I do plan on trying to write the book. Because believe it or not, there’s actually a lot more to my story. I told you, it’s been an interesting life. And I wouldn’t trade it for the world. But, I’d like to encourage you all to grieve anything you perhaps never did. You may have been told “Just get through it” or “It’s going to be okay” as a way to minimize the loss or rush you through the grieving process. That’s not okay. I encourage you to take this time to go back and feel your loss, whatever it was. And work through it. It doesn’t mean it consumes you. It just means you give it the attention and significance it’s deserving of. When you get to the acceptance part of the process? You’ll find peace. And peace is something we all need.

As I tip my hat to Renee who always pushes me to be better, I say Namaste.🙏