Week 3 Wasn’t So Bad

Gratitude is a practice that has helped me get through many things with what others refer to as “grace”. I’m not always “there”. Some situations still let me lose my cool. But I find that if I can find the things that make me smile a little or feel warm in the inside and be grateful for those feelings, then I can more easily let the hard shit go. 

These infusions and this part of the journey with cancer are definitely hard and finding gratitude is what can make or break the day. 

This was week 3 and holy hell was it so different! We got an IV in on the 2nd try. All my tools and tricks helped.

Today just a tiny list of the things I’m grateful for:

~ the best infusion to date. 

~ I have yet another emergency travel purchase that keeps me warm and has such a great memory attached to it. Love you, Alexis. 

~ Amazon rechargeable hand warmers 

~ having the strength and energy to enjoy a few minutes outside with Penny. 

~ Care team member Cooper for making sure Mommy is ok. 

We all know the saying about great days and great moments … Not every day is a great day, but some part of every day can be great.

Today was a great day to have a great day and to let that help me to LIVE A GREAT STORY! Persevere. Rock on. 💋🤘🏼

Week 2 Infusions - Done.

Hello friends! Thank you to everyone for checking in - whether it be directly via message or a comment on a post, none have gone unnoticed, and I’m grateful and appreciative for each and everyone of you.

I’m likely not going to be doing daily updates through this cancer journey. I’m keeping a lot more of my philosophical thoughts on life and personal growth to myself this go ‘round. Scleroderma has been a hard journey over the past 20 years, and I have shared every step of that process with my tips and tricks for what I think we should be getting from or giving to life. With a new “incurable” diagnosis that has a more tangible feel to the timeline than anything with scleroderma ever has life is just different now. I have new things to learn, and to give back to the community/in different ways. “Quieter” ways, so let’s see where that takes us on this journey.

Week one infusions were challenging to say the least. Scratch that, not challenging for the infusions, but the side effects in the after. I’m not doing chemo or radiation, but the cancer-fighter infusions hit very similarly - On top of what is just going on in this body, in general. Mouth sores. Those are new to me. They suck, but good teething gel has been a gift! The exhaustion has been some thing that I was not prepared for. Nor can you really prepare for it. Anyone that has lived with chronic fatigue and exhaustion knows that just when you think you’ve felt it as bad as it can feel. It somehow can manage to get worse and we can also somehow manage to get through that. Not going to lie and sugarcoat it and say that it’s easy and that I just always find the light at the end of the tunnel. Because I don’t. In the moment of things being harder than I expect them to feel, or harder than I think that I can get through - I cry. I cry a lot. And I say things like “I don’t know if I can do this.” Or even “I don’t want to do this anymore.” These are emotions and sentiments not lost on any of you, I am almost 100% rest assured in that. With that said, it was hard, I cried, I didn’t want to do it anymore,… 

And yet here I am. 

I just finished week two of infusions. Week two started out almost as badly as week one with fatigue, exhaustion, and the inability to get an IV. It took two separate days because after day ones numerous unsuccessful attempts, we decided that it was not going to continue for the day and we will try again the next day. Then i went home and I cried. I cried a lot. And I said things like “I don’t know if I can do this.” Or even “I don’t want to do this anymore. And we’re barely even started!!!!”Fortunately, we were successful on Day 2, Week 2 after just a couple of attempts. However, the infusion staff, and myself have always had it in our mind that we would probably move towards a port installation at some point. This is going to be a continuing process over who knows how long and this would just make life easier for everyone.

Today is “Week 2 - The Day After”. I actually woke up this morning a little energized, and for the first time been able to sit in the sunroom and reflect and watch the horses and be where I needed to be. It’s the first day I felt human/semi-normal since before Thanksgiving. So today I am enjoying the day of feeling alive and human and doing what I need to do to keep moving forward.

I see the primary care doctor tomorrow so that we can start coming up with a formula For this gaping hole that is in my hip. I have no idea what that is going to look like, and to be quite honest I’m a little scared. However, there’s no point in putting too much other emotion into it until I get there tomorrow and we are able to talk.

I will also be meeting with someone over the next week or so to discuss or even get started the process of getting the port placed so that going forward treatments are smoother and way less dramatic, and stressful.

Doing all we can to keep me persevering through this next thing. 

Rock on. 

💋🤘🏼

Not The Plan

I had scans in April and everything was great. No growth. No change. 

Sometime after that. May/June, maybe, I started having sciatica issues. Or so I thought. I’ve been through all the things. Yoga usually helps, to no avail. Saw my doctor. Had X-rays. But nothing was standing out. I was still in bad pain and very quickly moved into not moving well, at all. August was still a lot of fun and adventuring with my son while managing mild pain. I was traveling in September and by the end of the trip I was miserable. I can’t a cold in PA and fortunately fought that off like a champ, but the back/go only increased each day, it seemed. 

FF to October when my chiro ordered new X-rays. These showed some big changes in my lower spine and my hips. So, we started trying to work on that. 

Next up,  it was time for my 6 month cancer screening. That has shown that the lung tumor has grown. It’s no longer just on the surface, it’s now growing into my lung and has spread. To my thoracic spine, both of my hips, and my lumbar spine, at a minimum. Hence the continuing saga with my left hip and lower back pain … it’s actually a new tumor that is fast and aggressive. It has eaten the bone and is starting to eat muscle tissue. 

We’re doing all new PET, CTs, etc. To make sure we are on top of all the “new” things. 

I’m starting “targeted” therapy on the 28th. They are infusions that attack a specific cancer protein and try to turn it off to see if it will slow the growth. This is instead of chemo that kills healthy cells, too. This isn’t a cure. This cancer is aggressive. So, we’re shooting for as long of a good quality of life as possible. 

So, here’s where we’re at:

~ I’m NOT feeling ill or icky. 

~ Pain is my #1 struggle. It’s pretty intense at times. Definitely immobilizing. 

~ Scleroderma is quiet and causing no issues, but has decided to pass the baton on to lung cancer to see what IT can do. 

~ I’m breathing fine. My O2 sats haven’t dropped below 98%

~ Mobility. Or lack thereof. My #2 struggle. I walk with a cane now and this has been such drastic lifestyle change, virtually over night.

~  AND I've hit new exhaustion levels this weekend. I had no idea I could get MORE tired. I guess I was wrong. 

I could make work arounds and such, but you know what? No. Nope. Not this time around. I’m taking the help when I can, to make my life easier. My son lives here now and is taking care of horse feedings and all the heavy lifting around here. My daughter will be here soon and will take on whatever is the best fit for all of us. All my loved ones have offered to help as well. I really do have the best support system - now I just have to stay out of my head and be diligent about using it. 

Definitely NOT the news I was expecting. Yet, here we are. I’m still not sure where my feelings are other than the usual … “well. That didn’t go as planned. Guess this is what we’re doing now.”

Persevering and rocking on in the next leg of this journey - that’s what we’ll be doing over here!

💋🤘🏼

The Quiet Life

Hello, friends! It’s been awhile. A long while. I’ve been receiving PMs, DMs, emails, etc. for awhile now from a bunch of you lovelies - all checking in to make sure that I’m doing OK because it’s been so radio silent. Thank you for checking in - it means a lot!

Standard social conduct would be that I apologize for being gone. However, I’m not sorry, so I’m not apologizing. 

Say what!?

I’ve been radio silent because I’ve been deep in the throws of …. simply living my life. Quietly. With more intention. Enjoying the nature here on Pierce Place. More yoga. More meditation. Adventuring around Florida. Focusing on my health & wellness in new ways. Working on my 500hr Yoga Teacher Training. And more. So much more. 

The trip in April was life-changing in many ways. 6k miles alone gives a person a lot of time in their head! Coming home to the myriad of regular Scleroderma testing plus the new regular cancer monitoring were an added fuel to that fire. When I came out the other side of that, I inadvertently just dropped off from the social stuff. 

And it’s been lovely. Liberating in some ways. Definitely freeing. 

This fall will be 20 years living with Scleroderma and the wild rollercoaster ride that it can bring. 

In 2005, after surviving the chemo that saved my life; when we saw the lung progression slow; and feeling like I had my second chance at life, I all but immediately started doing advocacy work. Speaking at events, testifying in front of the Maryland State Senate, participating in task force work, running a support group in Baltimore, etc. I burned myself out. Moving to Florida was an easy way to transition into taking a break from all of that.  As I was experiencing a pretty significant flare, it was a much needed chance to focus on my health and well-being again. 

Fast-forward to 2017 when I started working with Yoga for Scleroderma. That single partnership kicked off my advocacy work again. For the past five years I’ve been back at that pretty hard. I’ve been an advocate. I’ve helped others advocate for themselves. I’ve documented and shared all the tips, tricks, and hacks I can so that folks can have the best quality of life possible. I love it all AND I have burned myself out. I’ve been trying to “do it all” AND capture/document it all at the same time to be sure to share it here. In all of that doing, documenting, and sharing, I wasn’t necessarily present or in the moment of my own life as much as I would like to think I was. 

Now. 2022. As I’m writing all of this, I’m seeing that it seems to be roughly a five(ish) year cycle that I go through this. I’m still doing all of the “work” and advocacy things. I’m just being more “here and now” for my personal part of this life-journey.  There’s so much more to my life than my illnesses. Yes, they are a part of my life and definitely affect my daily living.  After 20 years, though, I’ve really honed in most everything so that I’m not needing new hacks or new workarounds. I’m really just living my life. With nothing new to offer right now.

If THIS isn’t persevering and rocking on, I don’t know what is.

💋🤘🏻

Getting Through …

This week has been a lot more smooth. The follow-up with the Pulmonologist showed virtually no change in my lung function except that this year I had a positive response to the Albuterol they administer during the PFT, when in previous years I didn’t respond to it. Or, at least not enough that warranted being prescribed a “just in case” inhaler. So, that’s new. I’m not excited about it, but not upset either. As he said “you’re doing really well considering the level of lung compromise you have, so having this on hand can only help if you need it.” 

I don’t need to see him for six months and I’m back on track for yearly PFTs. Thank. Goodness. 

Through this whole cancer fiasco - yes, I’m calling it a fiasco because of the holy hell of ups and downs this past year has been - through it all my team has grown with some awesome additions that I LOVE! The heart failure specialist is amazing. His whole team and office have been wonderful. BUT. The new echo technician and I have VERY different definitions of what constitutes a gown. 🤣 Now. I’m not the most fashion forward person. Hell, without my fashionista guru Kelly, I’d be a hot mess. However, I DO know what a gown is and this paper bolero jacket she gave me for my echo this morning is not the gown she called it! 😂 

And, the six week nerve block administered for Neil’s eviction surgery? Yeah, we’re not twenty weeks post surgery and I didn’t feel the cold electrodes, the warm gel, or the wand during the echo. Other than knowing what she was doing and feel some extra pressure in the one spot, I didn’t feel a thing. Weird. That’s what I’m going with. 

Unless there is some weird result from today’s echo, which I’m guessing that’s not, unless my “Moves Like Jagger” during the car dance party from this morning’s commute “Funked It Up” and caused some anomaly, hopefully the follow-up next week will be “it” for awhile. I’m hoping I’m now back on track for my next cancer monitoring in six months and yearly Scleroderma testing after that. 

Please? 

The sign in the office this morning told me I’m amazing, and in general, I DO remember it. Y’all, I’ve been through some shit in the past twenty years AND I’M STILL HERE. Who’s that girl with the long hair? And a figure? And not a care in the world? And my pretty hair from the night I shaved it all off for chemo. I don’t even know her. Twenty years can change a LOT! So, through all that, I can confidently without ego say, I am amazing. I DO remember that. AND even though that’s the case, these months of new medical drama have tired my ass out and this girl needs a break. 

Nevertheless, I will Persevere. I. Will. Rock. On. 

💋🤘🏼

Ups & Downs. Highs & Lows

Last week I returned from a life-long bucket list road trip. 6567 miles. 22 states. 21 days. Driving alone. In my Jeep. 

When I was 10 I told my parents that one day I was going to drive alone, cross country, in my Jeep. 

I finally did! 

I turn 45 next month. This year is my 20th year with Scleroderma. In January when I learned that I still have a cancer “friend” sharing living space in my lung, I decided this was the year. Come hell or high water, I was going. I feel the most able and capable I’ve felt in a LONG time. I used to road-trip a LOT. I’ve missed that. For awhile they were too hard. There have been times I thought I’d never road-trip again. But, I DID IT. This wasn’t easy, but with the right practices for self-care, rest, and health maintenance in place, it was manageable. I stick to the same sleep schedule I maintain at home. I didn’t get up early. I didn’t travel late. I napped at rest stops when needed. I stopped at dinner each night. I did most all of the things I do at home, just on the road.  

What an adventure it was! I checked off a few bucket list items, fell back in love with my Jeep (but not enough for 6k mile road trips kind of love), spent time with some of my favorite humans, found a new love for Utah, went “home” to Montana, and SO much more! It was an amazing and life-changing trip. There are a lot of personal conversations and emotions to work with when you are doing nothing but driving. 

I’m so glad that I decided to make this trip happen. I hope to make it an annual trip (not in my Jeep, though 🤣) for as long as I am able. 

Today, we flip the script completely upside down. It’s the first quarterly scan day in this “new” life with managing cancer. As go-with-the-flow as I usually am, yesterday I discovered how much I was dreading this. Last night I messaged my friend and lamented that I just downright didn’t want to go today. Then, because I had to get up to an alarm this morning, I didn’t sleep well last night. That’s how I roll every time an alarm is involved. 

Regardless, I got through the morning with no hiccups and arrived to my appointment early. I was relaxed and the technician was a lovely woman. Unfortunately my veins were not cooperative. SHOCKING! (sarcasm) 

And for the first time (I think) in 20 years, I cried on the table. I was overwhelmed with feelings of “why can’t this ever be easy? Now I get to do THIS every four months?” and that’s just the tip of the iceberg. The poor technician. She thought she hurt me. I briefly explained to her what was going on. She was very empathetic and such a sweet soul. 

We got through the IV (3rd try) and the scan with no further issues and she sweetly saw me on my way. We agreed we’re going to have a great relationship going forward as she’s the only CT tech in this office. So, at least there’s that - another steady face in this journey. 

I say all of that to maintain transparency. Even with a positive outlook, the reality is that life is full of ups and downs, y’all. Each minute of each day can change in an instant. The best we can do is ride the waves. Most of April was amazing. This morning kind of sucks. Later will be better, I’m sure. 

Persevere. Rock on. 

💋🤘🏼

Be Your Own Best Friend

One of the things I hear time and time again from folks in the chronic illness community is that people feel alone.  How close friendships and sometimes romantic relationships struggle and even often times end. Leaving us angry at them. Feeling like they’ve wronged us. Maybe they have. Maybe they haven’t really wronged us so much as they just aren’t equipped to handle our situation with us. 

It hurts. A lot. Especially when a significant other or lifelong friend “don’t understand”; it feels like they don’t care or that they don’t believe you; or they offer toxic positivity that’s just not realistic. Maybe they don’t believe us, understand, or even care to. Maybe they can’t. Honestly, how could they? No one can know what it feels like unless they’ve been in the same situation. Sometimes, they’re also still in a phase in their lives where they can’t see past their own situation and their circumstances to have the ability to be there for us. Maybe, they never will. 

It hurts. A lot. I’ve learned that, in spite of chronic illness, friendships and relationships sometimes just need to end. We all grow (or don’t grow) at different rates. We all have different experiences that shape our own unique lens for viewing the world. All of these culminate to then set us on our paths in our journey and those paths are not always the same or in the same direction. 

It hurts. A lot. And that’s OK. It’s a loss worth grieving. Grieve it. Accept it. Move on. Find a way through. Your health and mental well-being will undoubtedly be better for it. 

You know who will ALWAYS be there for you?

You. 

If we’re lucky and life goes in the “natural order” of things, you are the only relationship you will have for your entire life. Make sure you’re building THAT relationship. Be proud of your accomplishments. Honor your failures. Celebrate even the smallest wins. Accept every setback. Treat yourself the way you treat your best friends. Be your own best friend. Rest when you must. Push yourself when you can. Cry when you need to. Laugh because it’s good medicine. 

Do whatever you must to take care of you. You’re the only one that really will.

Persevere. Rock on.

💋🤘🏻

“Settling” Doesn’t Have to Be a Bad Thing

“You can do anything you set your mind to.” 

That is toxic positivity. A phrase I used to use and will never again utter to anyone. The idea that if you work hard enough, study hard enough, plan well enough, you can do anything. That’s just not the case for everyone. Period. 

Yes, there are plenty of people that have pulled themselves out of the gutter to attain a career or lifestyle they wanted. There are individuals that have come through debilitating injuries in order to do a “thing”. Yes, it CAN happen. For some. Not for everyone. 

AND THAT’S OK! 

This is where radical acceptance comes into play.  “Radical acceptance is when you stop fighting reality, stop responding with impulsive or destructive behaviors when things aren't going the way you want them to, and let go of bitterness that may be keeping you trapped in a cycle of suffering” or “completely and totally accepting with our mind, body and spirit that we cannot currently change the present facts, even if we do not like them.”

Some see it as giving up or settling. The key here is the suffering portion. We’re going to have a certain amount of suffering in our lives, it’s inevitable. However, if I can lessen my suffering by accepting the fact that some things just aren’t going to happen because my body or my brain just don’t work in that way, then why wouldn’t I? Sure, it’s going to suck. There will be some grieving that “loss”, but there are a myriad of other things that can be done to find joy and happiness. Maybe even find adaptations of that “thing” that I want and still find happiness in it. It doesn’t always have to be all or nothing. 

Scleroderma has altered my body in ways that make some things impossible. There’s just no way around that. No matter how hard I try. Some things just aren’t functional. Some things aren’t safe. 

Though I never need to, in my yoga practice, I’m never going to do a hand stand or put my foot behind my head. It’s just not going to happen no matter how much I “put my mind to it”. No matter how many props I try or modifications I come up, neither of those forms work for this body. AND THAT’S OK! There’s so much more to yoga that I’m not missing out by not getting into those postures. My practice still brings so much to my life. 

Riding my horse is not safe for me with the severe osteoporosis. I “could” ride, but even the best riders have mishaps. Horses get spooked, riders make mistakes, etc. Having horses has become about the relationship, the love, the activity of their care, and riding is no longer important. 

Skydiving? No longer going to happen. Paragliding? Maybe. 

I would love to own a motorcycle. I’ve wanted one since I was a kid. It never happened and is not feasible. There’s just no way I can maneuver a motorcycle. So, I changed the perspective and added “riding a motorcycle” to the bucket list. Not the same as driving, but I imagined that the experience itself would get me the feeling I was looking for. 

I was right. Yesterday, I was able to check another item off the bucket list and spent the day riding a motorcycle with friends (one old, two new) around Daytona. During Bike Week. It was a wonderful day. Surrounded with people that helped me on and off (because that was a challenge!). They kept me safe. They made sure I was comfortable. All without me feeling like they were “trying too hard”. Their company was awesome. The weather was perfect. The bikes were beautiful. 

I wish days with this much joy, kindness, and friendship for you all.  

If Scleroderma (chronic illness, dis-ease, injury, etc) has changed your life and body to make some things no longer feasible, I’m sorry for that loss. It can be hard to let things go. I encourage you to grieve the loss, accept things for what they are, and shift your perspective to find new ways to enjoy this life to the fullest. I hope you can find that acceptance and “settling” can be beautiful and wonderful, too. 

Persevere. Rock on. 

💋🤘🏻

Self-Care Practices

Happy Twosday, my friends. 2/22/22. I love dates and times like this. I’m in the wonky sleep cycle these past few days, so, not  surprisingly I was awake at 2:22 this morning and I’ll be awake at 22:22 tonight. It’s how I roll.

I’m doing all of the things I can to manifest my own good health, wellness, and just a great life, in general, everyday. On special days like today, I try to be extra intentional in my thoughts to take full advantage - every little darn thing helps. It certainly doesn’t hurt!

With that in mind, I often get asked about all the self-care habits that I follow and how I came to them. 

Obviously, Scleroderma is the umbrella answer there. Living for eight years feeling like death more often than not was the catalyst that got me here. To be more specific, though, yoga is what has really lead me down the path I’m on. It’s not a cliche for me to say that yoga saved my life. Yoga is more than just pretty postures for the body. Actually, that’s one of the teeniest parts of yoga and far from the most important. Without going into a long dialogue that will bore many of you, the shortcut here is that yoga marries with Ayurveda, the “sister science” to yoga. Ayurveda and yoga have been around for thousands of years. We don’t typically do things for thousands of years if they don’t work. I’m not saying that in the “because it’s always been done that way” type of way, because I don’t blindly subscribe to that thought process. If something has been done for that length of time, it better be of benefit. Today there are plenty of scientific studies to validate the benefits of Ayurvedic practices. Additionally, for me, I’m apt to try things based in nature, that, again, at least do no harm. 

So that’s how I got here. I was tired of feeling like shit in my body and taking a bunch of drugs that might help, but, most caused more problems than they were helping. 

Now, what practices are part of this routine? Some are from Ayurveda, some are just little extra things that I know help the body function better. 

Here’s a list of activities I do daily …

Morning

-Tongue scraping

-dry brushing (face & arms)

-8 oz. lime water with the two meds I do take

-healthy tea (Mud/Wtr)

-yoga/eye exercises/breathwork/meditation

-spiritual/self-study reading

-journaling

Afternoon

-at least 30 minutes with the sun on my face & arms

-dance party

-I rest (usually napping) with my legs elevated for lymphatic drainage

Evening

-walk or cycle while I watch tv

-CBD

-sleepy tea

-oil pulling

-meditation

This is all, of course, in addition to a now vegan diet, cancer fighting supplements, and meal replacement shakes for extra calories.

Three days a week I also practice hyperthermia in the infrared sauna for almost 40 minutes at 131°. In the sauna there are chromotherapy lights (colored lights), 5 pounds of salt rocks for halotherapy, and essential oils diffusing. While in the sauna I Gua-sha my whole body with a rose quartz tool and I finish the last two minutes with “alternate nostril” breathwork. After the sauna when I’m done sweating, I dry brush my entire body before cleaning up/showering. 

Yep.  It’s a lot. Some days I don’t want to do “the things”. This is a time consuming process. It requires being intentional. Routine. Structure. Things I fought hard against for a period. I wanted to be carefree and spontaneous. I thought that’s what would make my life wonderful. Turns out though that feeling good in my body is what makes my life wonderful. Having a body that functions to allow me to do the things I love is the wonderful thing. 

This is how I get that. This is how I persevere and rock on.

💋🤘🏻

“Fighting” is Open to Interpretation

There are still a bunch of questions waiting to be answered, but this has been asked in the past month and multiple times in just the past week, so I feel compelled to offer some clarity. 

The question(s) have been related to the cancer diagnosis and/or treatment plan.  Basically, some folks have asked … “why aren’t you fighting?” or “why are you giving up now?”

At first these questions made me angry. So, I opted to sit with them for a bit to see why they angered me and so I could respond appropriately versus reacting through anger. 

Let me begin this answer by saying that “fighting” a disease or illness can be done in a variety of ways. “Fighting” is open to interpretation and THAT interpretation really lies within the person that actually has the disease or is doing the fighting. For one person fighting might mean trying every new drug or treatment offered by doctors. For another person fighting might mean utilizing Eastern medicine. For someone else fighting might be going all in on a diet and lifestyle change. For still another person fighting might mean creating a “toolbox” that pulls pieces from all of the above. 

Your version of fighting and my version of fighting might be two completely different methods. 

So, for those asking the above questions, the real question being asked is “why aren’t you doing surgery, radiation, chemo, etc. to fight this?” i.e., “why are you giving up?”

I am far from giving up, friends. 

Conventional methods to “fight” just aren’t going to work for me. Surgery isn’t an option because with the level of fibrosis in my lungs removing the lobe would obliterate my lung function. Radiation would compromise my lung function and my esophagus. Chemo would cause a litany of side effects, mostly affecting my diet and caloric intake. I’m already struggling to maintain 90 pounds, I don’t have muscle or fat reserves to sustain more weight loss. 

With that in mind, my tumor is Stage I and hasn’t grown in the three years since it was originally noted and mis-diagnosed. Last, though I’ve been diagnosed with cancer, I’m not sick. If nobody told me there was a tumor still attached to my lung, I wouldn’t know it was there. I live a really good life. A life that I manage by myself. The side-effects of the treatments would disrupt that. With no guarantee for success. 

There are plenty of folks living long, prosperous lives with cancer, even Stage IV. Like 19+ years. Some are now cancer free. Without surgery, radiation, and chemo. They’re still fighting. In different ways. 

So am I. I’ve spent countless hours reading research studies, books, personal accounts. I’ve been having heart-to-heart talks with myself. I’ve been sure to let go of some unhealthy habits that I was clinging to. I’ve overhauled my diet again and am now 95% vegan. I’ve spent hours figuring out how to tune in my nutrition and adding beneficial supplements. My yoga practice is more consistent and intentional. My meditation is more crucial. Journaling my emotions is a necessity. Adding in unconventional treatments that have shown promise even if they’re not mainstream yet. Planning life events is renewed. 

To be honest, this part, between the second diagnosis and now, has been exhausting. It’s been all-consuming. This is how it was when I did the diet and lifestyle change that got me through Scleroderma with more ease. Now, I’ve had to do it again. The plans that helped get me on track with that, interestingly, don’t all apply here. There have had to be some big shifts. Now that I have solid plans in place it should ease up a bit, but the “fighting” will continue. 

Many decisions, everyday for the past twelve years have been done from a fighting mode. Now the fight is just with an added opponent. I’ve not given up. I’m still fighting to persevere and rock on. All day. Every day. 

💋🤘🏻

I STILL Have Cancer

That didn’t go as planned. Not even close. 

I met with the oncologist Monday to discuss my PET scan results. While the surgery was successful in removing Neil, it appears that Neil was hiding his twin sister Nellie. Well, not only was Neil hiding her, but so was the fibrosis and calcinosis in/on/around my lungs. The surgery did exactly what it was intended to, with the information available and visible at the time. 

Even had Nellie not been hidden, she is actually in the pleural lining and would not have been able to be cut out like Neil. In order to surgically get rid of her, a lobectomy would be required. I’m not a candidate for that because of my lung function. At this stage in the game I’d also not entertain the idea of another surgery. While I’m recovering well, it was hard. My poor little body has been through SO much over the years. 

So. This is what we’re doing now. A treatment plan hasn’t been established yet. The appointment was late in the day, the oncologist wanted to consult with the pulmonologist, and I needed some time to process, research, and be ready to come back with the right questions. We meet again in a week.

I’ve cycled through the range of emotions that come with this. I’m exhausted from the rollercoaster of my health. Exhausted from rollercoaster of the last month, specifically. It has been a lot of sharp climbs and sudden drops and corkscrews. 

I’m on pretty even ground at the moment and just trying to educate myself and be ready to make the “right” decisions for the way forward. This is a Stage 1 tumor. I’m not in a place of “imminent danger” so there’s time to discuss ALL the possibilities.  There are some hard and fast “no’s” in regards to what I’ll subject this body to. Quality of life for the longest period of time is the ultimate goal. I really do Love This Life I live and strive to LIVE A GREAT STORY, so-to-speak, and that means actually LIVING my life, not sick from treatments and existing just to say I “fought”. 

This isn’t ideal, but it’s where I’m at. I can’t undo it, so I’ll just keep working to persevere and rock on. 

Now that I’ve shared all the details … I’m going ramble and take an opportunity make this a teaching moment. 

I’d like to talk a bit about the concept of “holding space” and “toxic positivity”. Holding space isn’t something that most of us are comfortable with. Holding space often leaves us feeling uncomfortable and fidgety. It’s a practice of real human growth. We’ve been taught to try to make everyone feel better, to offer solutions to any problem, to share our similar experiences, to do whatever it takes to bring about positivity - all examples of actual toxic positivity. 

I invite you to read over the attached graphics and consider these when offering support to anyone. I can almost guarantee it will be appreciated. 

Now, YOU go rock on.

Released by the Surgeon

My first autoimmune diagnosis was in 1997. Over the years I’ve had a variety of experiences with medical professionals. Mostly good, in the grand scheme of things. When push has come to shove and life-threatening situations have been handled, I’ve been beyond blessed to have doctors that I felt safe and comfortable putting my life in their hands. 

This cancer situation has been no exception. From Day 1 I have loved and felt very comfortable with the surgeon I was referred to. The man knows his stuff, is thorough, and has just the right mix of candor and wit perfect for my personality and approach to dealing with all of “this”.

Yesterday’s final appointment with him was no different. We had a more in depth conversation about the details of the surgery now that we’re “out the other side” and not still in the thick of it (in the hospital recovering and processing everything). We discussed how the original small incision turned into a bigger one. And a bigger one. And a bigger one. Three times bigger than he planned so he had room to navigate “all that scar tissue”. 

Then he told me how he removed part of my rib. … “hold up! Who-sie whatsit? You did WHAT?” …. “Don’t worry. It won’t affect how you’re held together.   It’s just that after all that cutting and knowing I needed to get into your body cavity, the rib spreaders would have broken your little ribs and that would be way more painful for you to heal from. I didn’t want to add to your struggles. So, now you’re missing this section of your rib” (pointing to the X-ray) … All I could do was laugh - “Ok. So THIS is what we’re doing now.”

He was very happy with my X-rays and how I’m healing. I expressed how I thought I’d be bouncing back faster than I have. While I’m doing GREAT, I still tire easily and my core gets exhausted and aches throughout the day. 

He was like … “you’re doing GREAT! I had to cut a three times larger hole in you than I expected. I took out part of your rib. I had my hands IN your body cavity. That’s MAJOR stuff for anyone. You’re this tiny thing. With other complications. Give yourself a break. … Now. I’m done with you. You’re released from my care and I hope to never see you again! *LOL*”

I’m good with that! One more down. ✔️

Oncologist is Monday. I likely won’t be as lucky there. Word is I have to have five years of clean scans before they consider me cured, so, I’m stuck with him for awhile. 

It’s all good. Life is good. Love this life. 

Persevere. Rock on.  💋🤘🏻

PET Scans & Emotions

Today, I headed to this appointment feeling confident, cocky, and a little cranky.  Ready to get this PET scan over and done with and move on with life. Definitely still cranky with all the shit I’ve allowed into my body in order to nip this whole cancer thing in the bud before it gets out of control, while knowing this was the least toxic route to go in that regards. With the thought process that my body will recover from surgery and I can detox from those medications more easily than the alternatives (radiation + chemo). I came in and sat in this chair with a clear head, full heart, and positivity abound that I’m almost across the finish line. This is the last test and I can up my detox regime and get things back on track. 

Then. Boom. Emotions. Tricky little buggers.  We’re all entitled to them. They’re all valid. They’re our own personal reactions to the things going on in our lives and around us. And sometimes they sneak up, out of nowhere and hit us like a f¥cking freight train. 

Here I am, once again sitting in the “toxic trailer”. I’ve been injected with the nasty juice and I’m sitting while it traverses through my veins and then I get to go take a nap while I’m in the tube. Not because they knock me out, but because I’m tired, and really, what else am I going to do for 30 minutes?

For whatever reason after the technician finished my injection and walked into the other room, an unexpected wave of emotions hit me. A flash of the big picture of what the last quarter of 2021 unfolded into for me. An acknowledgement, if you will, of ALL of it. And, a twinge of anxiety about the results of THIS PET scan. 

All unusual for me. Fool me once? Shame on …

Just a few months ago when I was sitting here I was cocky, confident, and cranky that the PET scan I was doing was unnecessary. Cocky that “I” knew better. Confident I “just” had Scleroderma scar tissue. Cranky that I was allowing myself to be filled with nasty things just to prove I was right. 

Well. We know how that turned out. So, I guess today, everything just hit and caused an unexpected cascade. I’m still optimistic and hopeful, but, I’d be lying if I didn’t admit that I’m not cocky or confident this go ‘round. 

AND I’ll STILL persevere and rock on while I wait for results. 

💋🤘🏼

Looking Forward

December 30, 2021

It’s been 15 days since Neil’s eviction. 

What a rollercoaster this year been. Especially the days surrounding the surgery. From “I should be able to do this with a scope - two small incisions. Worst case, because you are so small, maybe a three inch incision. You’ll get to leave the hospital on Day 4 - cancer free” to “I couldn’t get the tumor. I tried. The scar tissue was too bad.” to “pathology came back and what I took out WAS the tumor. It was just encapsulated in scar tissue, it didn’t present as the tumor initially AND the surrounding lymph nodes I took came back negative for cancer. WE GOT IT!” 

Four days? Nope. Nine. 

Two small incisions? Nope. 

A three inch incision? Nope. Seven inches and a “stab” wound, too. 

Shanked and shivved. You know - for that stint I did in prison. That’s what I’m going with. I’m tired of health stories. Let’s mix this one up. 

In all seriousness, it’s been an adventure. Once again, I’ve managed to kick ass. I’m home. I’m still healing. I’m healing well. AND I’m exhausted. Way more easily than I anticipated. I’m honoring what my body is telling me. I do what I can and rest the rest of the time. LOTS of chair yoga. Meditation. Journaling.  I’m surrounded with beautiful nature and the critters I love. 

One moment at a time. Persevering. Rocking on. Soft rock, maybe, but still doing this thing. 

Here’s to a quiet, yet well-lived 2022. 

💋🤘🏼

Neil IS Actually Dead.

December 22, 2021 - Good-bye Neil Hospital Log - Day 8

I’ve been sitting with some news since yesterday and didn’t want to post until I had a second confirmation from my pulmonologist. He came in earlier than normal this morning to tell me. So … 

NEIL IS DEAD!!! 

And the lymph nodes the surgeon removed around the tumor are all cancer free!!! 

Confused? I was. 

Here’s what happened…

During surgery, the surgeon took out a jawbreaker sized mass that he thought was the tumor, but it was hard to tell because of all the scar tissue. Everything was gnarled, entertwined, and nasty. Pathology inspected it on the spot and said “no it was just fibrous scar tissue.” 

The surgeon couldn’t find anything else except the huge golf-ball sized mass of scar tissue. Everyone then was assuming the tumor was encased in that.  He couldn’t remove that without removing the lobe of my lung. He tried. The scar tissue was just too thick. So, he closed up, feeling like he failed me.

 

He’s been depressed and sad because he felt horrible for cutting me open and having to put a tube in me - all for nothing. And that my future steps would be the dreaded radiation and chemo and I’ve already been through so much.  

 

Before coming to see me yesterday, he wanted to see what the real pathology tests showed. After further inspection and real testing, It turns out that the tumor WAS in the mass he removed AND that the lymph nodes he took out, came back negative for cancer. 

So, he got the tumor. I’ll need a PET scan to confirm. But 99.9% NEIL IS EVICTED AND DEAD. 

Read that again, if you need to. 

 

We cried. We hugged. He said he was celebrating with some wine last night. 

BEST CHRISTMAS PRESENT EVER!

Good-bye Neil, your free-loading days are over. You will not be missed. 

Today, I had an echo to see how my heart is holding up after surgery. 

The chest tube is scheduled to come out today and I should go home to my friend’s tomorrow for a few days before returning to my own home. 

*picture is my Cooper while playing at daycare today. I say he’s howling with joy.

Neil Wasn’t Evicted. I Still Have Cancer.

A little evening update for today. 

I’m still in the hospital. Likely to be here a few more days. Due to the scar tissue in my lung the surgical sight has not healed yet and I’m leaking a little air. Not ideal, but not a surprise, either. As a result they hooked Althea (yes, I named my suction box) back up to suction and here we are. I’ve also developed a little fluid in my lung. I probably didn’t help myself here - yesterday when they unhooked Althea from suction, I got lax in my breathing exercises. We’re both back on the job. Between Althea’s suction and my yogic breathing exercises, we’re going to get this squared away. 

My care continues to be top notch. Though this isn’t ideal, I’m in the best place to be for it to happen. My pain is well managed with meds every 8-9 hours. The nerve block has been a saving grace, for sure. 

I’ve been cycling through a whole myriad of emotions. As to be expected. I’m allowing myself time to sit with them all. Then it’s time to move on. 

At the end of each cycle I come back to Gratitude. I’m grateful for this body. This little body has been beaten, abused, and to hell and back from the list of autoimmune conditions she’s been saddled with AND the pharmaceuticals I’ve subjected her to. 

Through ALL of that, she continues to fight on. When in reality, she shouldn’t. In conversation with my pulmonologist yesterday, who’s very straight forward with zero bedside manner, I asked, “if my lungs are scarred SO badly AND I’m in congestive heart failure, how is that I still live the “active” life I do? How am I not on oxygen? Or worse?”

His answer, “I don’t say this often, but, luck. Something has been on your side to allow your lungs and heart to still keep you going in spite of everything going on. You’re an anomaly and I can’t logically answer that.”

Now. I’m not going to take all the glory here. Medicine has saved my life. There’s no doubt about that.  It has also caused some significant other side effects and complications.  At the end of the day, though, this little body has fought hard through diseases and poisons to get us to a point where I could change my perspective, and, in turn, my lifestyle, and recognize the force that she is and that I needed to make her a priority and that I needed to do all I could to help her, help me. Though she be tiny, she be fierce. She has persevered. 

So we’ve been doing this work. There are plenty of times she’s worked harder than me. I’ve not kept my priorities in check. We’ll get it right. We’ll get our shit together. I’m not delusional to think I will have an easy health journey and everything will be butterflies, rainbows and glitter-shitting unicorns, but I do believe we’ve got more chapters to write and more work to do. 

These bracelets came today and they’re perfect. 

We will continue to persevere and we’re going to rock the f¥ck on as long as we can. 

💋🤘🏼

Final Countdown

Just over 12 hours until Neil gets evicted. He received his final eviction notice today. Unless he miraculously is gone by tomorrow, we do this thing at 0845. 

As expected my emotions have been all over the map today. I’m in a “good” space now. Lots of intentional pauses, breath-work, and meditation for me through the day. 

And of course some laughter …

I’ve variations of this conversation over the years anytime there’s a procedure taking place. I had it twice in the last 48 hours. 

Nurse: Your last menstrual cycle was 2006?

Me: Yes. 

Nurse: you don’t have a period?

Me: No. 

Nurse: There’s no chance you’re pregnant?

Me:😳😳 Absolutely not. 

Nurse: Well we still have to do blood work because if your age. Just in case. 

Me: I get that you’re doing your job and following the guidelines, but if I’m pregnant, you can give your two weeks notice because I’m going to be making bank and I’ll cut you in. I had my tubes tied in 2003.  I went through chemo induced ovarian failure and menopause in 2006. I haven’t had sex since 2009. If I’m pregnant I’m going to be getting book deals, movie deals, you name it. But, I get it. You’re doing job. 

It makes me laugh. Every time. Seriously. I KNOW I’m not the only one. It’s not that uncommon these days for younger women to have lady bits that definitely are NOT making babies. 

Also, removing a nose ring with these nubbins took some creativity. Thank goodness I have just about every type of tweezers and forceps on the market to handle ALL the tasks not suited for nubbins. 😂🤣

Let’s do this!

Persevere. Rock on. 

💋🤘🏼

IT’S ON!

IT’S ON!

I had a final call with the surgeon’s coordinator to confirm that surgery is on for December 15th. Neil will be evicted. Good-bye, Neil. You have to die.

At this point I’m still just carrying on life as “normal” as much as possible.  I’m ready for this to be another part of my past. I’d be lying, though, if I didn’t admit that I am starting to have a little increased anxiety the past week or so as I’ve known the date is looming closer and closer. I’m not panic stricken, just very aware and in tune with all the complexities of my body in relation to surgery in general. 

Add on phrases like “I’ll deflate your lung” and “you’ll have a chest tube for three days”, neither of which are high on the list of things that sound fun to me. Lastly, while the plan is to go in and just remove the tumor via a “wedge resection”, there is also a possibility that it won’t be that simple. A lobectomy is actually what they would normally do in this instance, but because my lung function is already decreased due to fibrosis, the pulmonologist has requested this procedure because a lobectomy would decrease my function enough that I then would almost assuredly require daily oxygen use. 

THAT concern hovers in the back of mind most, I think. It wouldn’t be the end of the world and I would figure out how to make my life work even if that is the case, and yet, it’s just not an added complexity I’d like to add to my routine.

I’m very grateful and lucky to live in a day and age where I’ve survived Scleroderma for 19 years and now have a negative ANA and no Scl-70 markers. I’m grateful that the issues I deal with now, - ILD, heart failure, Raynaud’s, GERD, and the lingering fibrosis in my tendons and joints, are all manageable with lifestyle, diet and just a very few medications. I’m grateful for all of these things AND I’m still tired of managing my health. It’s still a full-time job. It’s manageable AND it’s a f¥cking LOT to manage. I’m not ready for oxygen. I’m not ready for “one more thing”. Cancer (though “easily resolved” in this case) is the last “one more thing” I want right now. We’ll, I absolutely don’t want this, but you get the idea. 

So, I will keep on keeping on. I’m putting my trust and faith that my surgeon will do everything in his power to keep this as minimally invasive as possible. I’m hoping that Neil has understood the eviction notice he’s been given and that he’ll go quietly. At the end of it all, it is what it is and I can’t do much else about it, so … as always, what do we do?

Persevere. Rock on.

💋🤘🏻

What is Healthy?

It’s a “funny” thing how my perspective has changed after 20+ years living with chronic illness. My measure of “healthy” for myself is vastly different than it was once-upon-a-time. 

These days, I feel “great”. Great is a word that can be different over time. Today’s great is in comparison to how shitty I have felt in the past. Today I feel great because I can get moving in the morning without tons of dread and tears. Today I feel great because my afternoon naps are down to thirty(ish) minutes most days. Today, I feel great because I can eat without nausea and vomiting at bedtime or 2 a.m.  Today I feel great because I can manage my day as long as I take the breaks I need between tasks. Today I feel great because my pain is not excruciating and debilitating. 

These feelings of “great” are all in comparison to a time when my life was completely the opposite. Getting out of bed was a challenge and some days almost impossible. Pain was pretty much all I knew. I would accomplish very little. My naps were long and sometimes many a day. Often times by bedtime I was completely nauseated and would frequently end up vomiting before I could fall asleep.

AND because of all of these wins in my current health journey allowing me to feel “great”, it’s sometimes easy to forget that I DO have Interstitial Lung Disease and I’m in Congestive Heart Failure. Let’s not forget I also have Neil the Neoplasm squatting in my chest and freeloading on my lung.

It’s easy to forget those things until the surgeon calls and reschedules Neil’s eviction date by two weeks because he wants me to see a heart failure specialist. Above and beyond the extra echocardiogram he has requested with my normal cardiologist. He’s erring on the side of caution to make sure my heart is strong enough to handle the stress of this surgery. 

For that I’m grateful. It has, however, been a less than cheerful reminder that I’m not as healthy as I kid myself into believing. Just another part of the journey. Making sure all of the ducks are in a row and that we can move forward. 

Fingers crossed everything can proceed and Neil will be evicted on December 15th. 

Until then, as always, what do we do?

Persevere. And rock on.

💋🤘🏻

Ain’t Nobody Got Time for Raynaud’s

This isn’t completely accurate, the sun was NOT shining when I did chores this morning, but it was 68°. 

I did morning chores in a long sleeve ”thermal” top with no gloves/mittens and I was completely comfortable.  My hands were cool to the touch, but no color change and no pain. 

Last year, I would have bundled up and still been crying by the time I finished. Last year,  anything below 80° and I was miserable. Miserable. I would rush through chores and then rush to sit in front of myinfrared light with tears in my eyes as I tried to warm back up. We won’t even go into the months of the most horrible ulcers I’ve EVER had - on my feet. Had it not been for the barn partner I had last year, I would have had to hire help. I couldn’t walk a lot of days. 

The difference? Over the summer I caved and started talking Sildenafil. We all know that I fight tooth and nail to manage my health with no pharmaceuticals when it’s possible. 

Raynaud’s and GERD are the two still ”active” Scleroderma issues that I continue to struggle with. They are the only issues that I’ve not been able to fully control with diet and lifestyle. The GERD issues I manage with natural treatments, but the Raynaud’s has continued to be the problem child and like I said, last year was the worst it has EVER been. And I live in FLORIDA!

Right now, as much I don’t like it, I’m also very grateful for the meds that are keeping me active and functional. 

Ain’t nobody got time for that. I’ve got shit to do! Like a tumor to evict and horses to gentle. 

Ain’t nobody got time for that.