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.

💋🤘🏻