Offering hope to those on the path behind me

Tag: 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.

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

I WILL find a reason to Smile

2016 was going to be all smiles and celebrations. My oldest daughter turned 21, my youngest daughter graduated from high school, and I celebrated half a century on this earth – 13 of them as a cancer thriver.

Last summer my girls and I plotted to talk my husband into taking a family cruise. You see, my husband had promised me for 20+ years that he was going to take me on a cruise one day. We were supposed to go on one for our honeymoon but other factors prevented that trip. Ever since I have waited for my cruise. 2016 sounded like a great year to celebrate all of the milestones in our family.

January was an optimistic month. My husband received good news at MD Anderson. The tests showed that the trial he was participating in was working and his cancer had slowed down. In fact the doctor was extremely optimistic about his status. The cancer was not growing and had become stable.

February that door was slammed. We were not able to continue going to MD Anderson for him to receive treatment. That’s a whole other story, but the long and short is the insurance company no longer contracted with MD Anderson so now we had to pursue options elsewhere.

March came and we found ourselves at the hospital at the end of the month. There was fluid in his lungs and he was having pains in his back. We found out the cancer had spread to his brain and his spine. I thought those were the longest 2 weeks of my life. I was wrong.

He stayed in the hospital almost 2 weeks, and after much dialogue with the doctors and the hospital staff, we were able to go home.

May came and we celebrated my nephew’s graduation from college. It was such a great feeling that we were able to travel together. We spent a lot of special time with family. Things were looking up again. His spine was feeling better and he got a short break from brain radiation. He was enjoying life a little.

By the middle of May he was back in the hospital. His lung capacity could not keep up and when we left the hospital we had oxygen tanks that would be his new lifeline. Every time a new diagnosis was shared with us, the wind in our sails would slow down just a little. Leaving the hospital with oxygen 24/7 was scary, and he set a goal to live to see our youngest graduate from high school on May 27th.

May 27th arrived. We had a pre-party at our house for family and friends. The 2 of us, the oxygen tank, and many friends and family watched my daughter walk across the stage and receive her diploma. It was so good to seem him out on the field hugging her and celebrating her accomplishment.Kaci graduation 2016

June rolled in and we were back to hoping things were turning to the positive. We were talking about goals. Setting new goals. Even writing a book together.

Before I knew it July had arrived. On the 4th my daughter turned 21. On the 7th I turned 50. We celebrated both birthdays by going to a baseball game and having a beer. Unfortunately, the heat was too much and my husband decided he did not feel he could go. We celebrated those milestones without him.

July 17th. He had a restless night. Early that morning I suggested we go to the emergency room. He agreed. Unfortunately he was too weak to get to the car on his own. We had to call for an ambulance. We spent the next few days at the hospital and learned that his latest scans showed more progression of the ugly cancer. The doctors suggested that we make arrangements with Hospice.

We came home on July 19th. I believed we would be making friends with the hospice nurse. I believed I would see them regularly over the next weeks. I have heard many great stories about people living for months on hospice or even better “graduating” from hospice and finding a new goal to look forward to.

Unfortunately, none of that came to fruition. Saturday night it became obvious that I would not be developing that long-standing relationship with the hospice nurse. My best friend and husband passed away on July 24th.

It has been one month. Life for the rest of us continues on. It is not the life I envisioned. It is not the life I wanted. But it is the life I have. He sent me a last love letter, with the help of his beautiful cousin, In it he said “I hope you find a reason to smile.” Everyday I try to find a reason to smile. and when I do I know he is smiling too.

Now we have the opportunity to make the rest of 2016 a good year. While I know everyday will not be good, I can find some good in every day.

And yes, I am going on a cruise before the end of the year!

Hip Hip Hooray – Time to get a new Hip

I had a new deck, now it was time to get a new hip.

Now that I had the hysterectomy, it was time to move forward…again.

The hysterectomy was done so I could take Arimidex, another hormone blocker for ER+ breast cancer. This was going to be easy. All I had to do was take 1 pill a day for the rest of my life. Easy.

Oh, but wait, there’s more. Since I had bone metastasis, I also got to have monthly infusions of Aredia. It’s purpose is to strengthen bones in an effort to keep the cancer from attacking them and to keep from having any bad breaks.

In the meantime, now that the hysterectomy was behind me, I was taking the hormone blocker, and getting the monthly Aredia infusion, it was time to find out if I would ever be able to walk on my own again. In December, my radiation oncologist and my regular oncologist recommended the same local hip surgeon. With glowing recommendations I was able to get an appointment with one of the best hip surgeons in the area.

My husband and I had hope based on all of the positive recommendations. Unfortunately, when we met the doctor, the air was knocked out of us – Again.

I need to give credit to the surgeon. He was very nice and completely honest about his abilities. After looking at my scans and reading the reports he told me “I’m sorry. I can’t help you. There is too much damage.”

You could have knocked me over with a feather. The wind was gone from my sails and with only one hip, I wasn’t very stable (ha ha).

As I was still trying to catch my breath, he followed up by saying “There are only 4 or 5 surgeons who can help with this. One of them happens to be in San Antonio. I’m going to send your records to him.” In fact, it was better than that, he was actually friends with the doctor and called his office before we left.

In 2011 we met my orthopedic oncologist. He was amazing. He looked at the scans, reports and x-rays and started talking about options. My head was spinning. I don’t think I really understood anything he said. Thankfully, my husband was there and understood the language (he majored in kinesiology in college). What I remember most is the equipment he wanted to use was not available in the US yet. It was stuck in a government approval process.

I was excited he was talking about options, and then, just like that, the air was out of the sails again.

We made a follow-up appointment and drove home. Over the next few months, we drove to San Antonio several times to meet with the doctor. Each time he would talk about options. I was beginning to get a little frustrated, wondering if I would be using a walker the rest of my life. Finally, during our trip in July, my husband and I were wondering aloud in the car ‘Why do we continue to drive two hours to see this doctor if there isn’t anything he can do?’

When he walked in, it was as if all of those other appointments had been his way of processing everything. Instead of us asking why we kept driving to San Antonio he shocked us by saying “It’s time. When do you want to have surgery?” What? Did that just happen?

After the shock wore off, my surgery was scheduled for August 3, 2011. It was time to get a new hip!

 

 

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