Offering hope to those on the path behind me

Tag: metastatic breast cancer (Page 1 of 5)

Finally a (somewhat) Positive Update

Update. In case you were wondering, I’m still here. I know it has been about a month since the last update. The good news is I am doing better than in March and April.

As I wrote in my last update, the Enhertu was not a good fit. So now I have moved on to a new treatment, weekly Taxol infusions. I had my first infusion last week.

I am happy to report I had no noticeable side effects from the first infusion. From what I understand, the lower dosage of weekly infusions may even mean I get to keep (what is left of) my hair. But only time will tell. And if that is the worst of it, then so be it. Could you send me all your hats to wear, just in case?

And in case you were wondering did the Enhertu at least do something helpful?

Last week, I had my 3-month scans. The doctor said “Well, if we had still been planning on Enhertu, we probably would change course” or at least something along those lines.

Honestly, they weren’t bad/ But they also didn’t show any improvement. The CT was still clear for any progression in the organs. The doctor even commented how he liked to share with other patients about how he had one patient that has been living with bone mets for 12 plus years (don’t worry, he doesn’t use my name or share any HIPPA information, just tries to be encouraging which is one reason I have trusted this man for 20 years). My lungs must have looked better, too, since he dialed back the steroids I’ve been taking for the paracentesis (caused by the Enhertu).

The bone scan, however, showed 2 more lesions in my spine (I feel like the incredible shrinking woman these days – gone are my days of saying I’m 5’6″). So this new May scan will become the baseline for the new treatment. The good news, I’m not feeling any pain with the new spots, so that is a win in my book right now.

How is my mental health?

I will be honest, March really took a toll. April I started to feel a little better. Now, while I feel like I am on the right path, it is hard to jump right back to where I was. I’m still a little anxious that another bone may spontaneously break. I’m definitely more cautious in my walking and I’m still building my strength back from the full month of not being able to do anything.

I have started back to Physical Therapy and am happy that the PTA I’ve been working with since 2017 has now moved to a location much closer to me and I don’t have to explain all of my history to someone new. She has been amazing to work with over the years and we work well together with “Can you do this?” and my response “I don’t know but let’s try!” Sometimes it works and sometimes it doesn’t. And then we try something else.

In a nutshell. I am back to driving (which if you know me is one of the best things for my mental health). I am no longer using a back brace. Pain medication is back in the medicine cabinet, not on the kitchen counter. Working on building my walking confidence back, slowly but surely. Getting weekly infusions, hopefully with minimal side effects as we move forward. And ready to get back to enjoying life again.

Grieving Widow is NOT my Identity

For J.R.s birthday this year, I planned a few fun things. I didn’t want to sit at home and brood, and I didn’t want it to go unacknowledged either.

The craziest thing I did was book a Discovery Flight with Genesis Aero in Georgetown. For me, it wasn’t just a flight to discover if I want to be a pilot (which would be AWESOME by the way), but it was also about rediscovering who Kim is before she puts on any other hats.

You know the hats I’m talking about: mom, daughter, sister, wife/widow, friend – but before I put on any of those hats I am KIM first.

Between cancer and grief, I have forgotten who Kim is as a person – not a cancer patient, not a wife or grieving widow, not a mom. What is it that makes Kim, well, Kim?

The Discovery Flight was about reclaiming my sense of adventure.

As I shared with friends about my discovery flight I began to notice a similar reaction from a lot of people (aside from the “are you really going to do that?”). Almost everyone asked if J.R. was a pilot or if that was HIS dream. Ummmm. NO! They did not understand that although I was doing this on his birthday, I was doing this for ME! And then they really thought I was crazy.

J.R. was not a pilot, although he liked playing simulation flying games, something most people didn’t know about him was he was terrified of heights. He was fine on a commercial flight, but I’m not sure how much he would have enjoyed the little Cessna I was co-piloting. This was NOT about him, but it was another way I continue to try to honor him – by rediscovering KIM.

Honestly, I was the one in the relationship that loved to do what he might have called “crazy” things. (If you know J.R. you can imagine how he probably did more crazy things before we met to last him a lifetime). I was the one who jumped off the cliffs in Italy. I am the one who wanted to try skydiving (although I never did get that done and I’m not sure the doctor would sign off on that now).

What’s next on the adventure horizon? I’m not sure yet but I wouldn’t be surprised if it includes scuba diving lessons or ziplining (don’t worry, you won’t be seeing any bungee jumping videos, I may be adventurous, but even I have my limits).

From Grief to Choosing Joy

It seems I’m seeing more and more posts and books about Grief these days. And not the Charlie Brown “Good Grief” kind.

I purchased Sheryl Sandberg’s recently published book called “Option B: Facing Adversity, Building Resilience, and Finding Joy” Although this is not a book review, so far I give the book two thumbs up. She speaks directly to me. However, I am a person who is still grieving, just like her.

Many Facebook posts I see about grief are titled something along the lines of “Things I wish people understood about losing _______”(you can fill in the blank with parent, child, spouse, even close friend).

Until I was thrown into the depths of grief, none of these books or blog posts would have hit me the way they do now.

While I think it is great to have a dialogue about grief, because keeping it bottled up is not the answer, people are never going to understand the depths of grief until they have found themselves swallowed by it.

It is not something that is easily explained, nor can you set a time limit on it. Someone who has never experienced grief will not understand that the hole in your heart will never be filled again. At some point, scar tissue will form over the hole, but as anyone with a scar will tell you, you will always remember the story of how you got that scar.

Have you ever had a scar that when you touch it the wrong way, or bump into something, your brain gets the pain signal? It is not the same pain signal you may have gotten when you were originally injured, but it is a reminder that the injury was there. The same can be said for grief. Over time, the scar tissue will form, the pain won’t be as intense as the original, but it is still there. And you never know what will be the trigger (like bumping into furniture in the middle of the night, especially after you have just rearranged, grief rearranges things in my path all the time).

Somewhere along the grief journey I discovered Emily McDowell greeting cards (even before they were mentioned in Sheryl’s book).  Her cards are funny and honest. I love them. My personal favorite is:

Funny But Honest

I have been blessed with some amazing friends and family in my life. While they may not understand the depth of my grief, they have been there for me and continue to be there for me when that scar tissue gets bumped and sends the pain signal.

It has been just over 9 months since my father (7/20/16) and my husband (7/24/16) passed away. And while the scar has begun to form over the hole in my heart, the only way that I can carry on is to Choose Joy daily. By choosing joy, I’m helping that scar to form so the hole does not feel like such a void.

Get up and Walk? Are you crazy?

Modern medicine still amazes me!  Here I was with a brand new rebuilt hip and the very next morning the physical therapist tells me it is time to get up and walk.  Just like that. Who did she think she was, Jesus? She might as well have said “Get up! Pick up your mat and walk” (John 5:8).

I looked at her like she was joking, the look she gave me said she wasn’t. Here I was less than 24 hours out of a major surgery and I’m wondering how in the world I’m supposed to get up and walk. I hadn’t been able to walk for the last 10 months.  It was a good thing for pain medications!

My first attempt to get up and walk I made it all the way to the bathroom door. All 5 steps. Wow. That was exhausting.

The next time I was able to get as far as the hospital room door. In other words, I added about 3 more steps.

The physical therapists kept coming back, it didn’t matter if it was the same one or not, they all made me get up and walk. Granted it was with a walker, and they were holding onto me. But those first steps were some of the most exhausting steps I’ve taken in my life.

Surgery was on Tuesday, and by Saturday the doctor was telling me it was time to go to rehab. I will tell you I was excited to get out of the hospital, but I was terrified of how much more they might expect of me at the rehab facility.

Sitting in a wheelchair after arriving at the Physical Therapy Rehab facility Sunday August, 8. 2011.

Sunday morning, it was time to head to rehab where they would teach me to walk again.

They transferred me via ambulance. Check that off the bucket list! Not sure that it was ever on my bucket list, and honestly it was the most painful ride ever. I think the driver managed to find EVERY single pot hole in San Antonio. There were not enough pain medications for that trip!

We finally arrived at my new home for the next few weeks. I was never so grateful to be out of a vehicle.

I guess the therapists at the new facility decided an ambulance ride through San Antonio was enough torture for one day. I met my nurses, got settled in my room and slept really well that night.

If you have never spent any time in a physical therapy rehab facility, let me just say I was significantly younger than 99% of the people staying there.

After being there for a few short days, it became obvious that many of the other patients were not happy about being there. When the nurses and nurses aides came to my room and looked worn out. My husband (J.R.) and I talked to them, asked them about their families, found out their stories. They became our family. I like to think they left my room feeling a little refreshed because we weren’t yelling at them. J.R. had brought a bag of silicone bracelets our church wore all summer they were red and said “God is Big Enough”), he gave one to each of the nurses/nurses aides that came in my room. Many of them wore the bracelet the entire time I was there.

I spent 10 days in the rehab facility, but the people I met there made a lasting impression on me. I hope we made a lasting impression on them.

Time to go HOME!

 

Enduring the Pinktober Fest

enduiring-pinktober

As you might have guessed, Pinktober is not my favorite month. Every year when October rolls around we are inundated with Pink Ribbons and Facebook posts asking us to do something silly like posting the color of our underwear or other such foolishness.

I will admit for the first 7 years after my original diagnosis I was sucked into believing that it was all a good thing. I have tons of breast cancer awareness shirts, cups, mugs, wristbands, etc that I purchased over the years, or that others purchased for me.

I fell into the trap of thinking I had done everything right and that because of that I was GOOD. After 7 years, I had been lulled into believing that I HAD BEAT CANCER.

If you have read any of the previous posts, you know I did not BEAT CANCER.

what-stage-4-looked-like

In August 2011 I had surgery to repair my hip destroyed by metastatic breast cancer. This photo is in the rehab hospital. Note I’m sporting the Pinktober shirt.

Just as I celebrated 7 years of being cancer free, I got the phone call.

My journey took the Stage 4 Exit onto a new cancer highway.

Last week was my cancerversary for my stage 3 diagnosis 13 years ago. This week I can celebrate my Stage 4 cancerversary. The celebration is that I am still here to share my story. But it is a bittersweet celebration. One that I wish no one would have to celebrate. Continue reading

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