July 1st to August 17th - Happy News!!!

 

Happy News!!! 

I have many things to celebrate:

1) I'm almost two months post my TAVR procedure to replace my aortic valve due to aortic stenosis. Details in previous posts.

2) I've been fortunate to participate in cardiac rehab post TAVR and feel that I'm getting stronger. I've completed 16 of 36 sessions.

3) I had a visit with my oncologist today who told me that, due to my recent scan results, I will now only be scanned every six months vs. the current three.

4) My brother, Don, and his wife, Frani, have invited us to accompany them on a riverboat cruise on the St. Lawrence River between Canada and the Thousand Islands region in upstate New York. This is a relatively small boat with a capacity of 64 passengers. We are scheduled to leave from Kingston, Canada on October 18th at the end of the peak fall leaf season. Can't wait.

I've struggled over the past month with aging -- not cancer. My daughter, youngest grandson, and I took a trip to Michigan to pick up my middle grandson from camp. He attended a fantastic summer camp, Lake Minnewanca, for two weeks. In my mind, I expected to spend the weekend kayaking and cycling in this beautiful part of the country.

Closing Ceremony

Instead, I found myself staying back at the rental while my daughter and grandsons went kayaking, cycling, and visiting an amusement park. I had difficulty getting off the low toilet with no bars, getting up from the couch and walking any distance to local restaurants. It put me in a "funk", but I'm better now and counting my blessings. As they say, getting old is not for the faint of heart. The good news is that, despite challenges, I had an unforgettable time with my grandsons and daughter. 

It's officially back-to-school time (and I'm so glad I don't have to go back). Fall is one of my favorite times of the year. I look forward to cooler days, deep blue skies and fewer doctor appointments. I hope all is well with everyone who reads this.

Kathy

April 27th to June 30th, 2023 - My Third Anniversary

 

Three Years Later

Three years ago, I went to the hospital to have a malignant lump removed from my right breast. I started writing this blog so I could remember what happened -- the triumphs and challenges. It was a different time. You can read about it here.

It was a time when Covid was ravaging our country. They had very strict Covid protocols and I was only allowed to have one person accompany me to the hospital. Bill and Liz agreed that Liz would be the one. 

With my history of surgeries, I knew what to expect and wasn't anticipating any problems. The surgery actually went quite well. Unfortunately, they discovered that it wasn't just a "lump" that needed to be removed. It was apparent that the cancer had spread to my chest wall. An additional, and much more extensive surgery was going to have to be scheduled.

I came home the next morning feeling great. It was Liz's 42nd birthday, and with the rest of my support system in place (Bill and our dog, Adie), Liz was able to head home.

So it has been an "exciting" three years. Here is list of what I've experienced:

• A second surgery on my chest wall with three outstanding surgeons. Details
• 30 radiation treatments
• Hospitalized with multiple blood clots
• Hospitalized with heart failure
• Frequent visits with my cardiologist and oncologist.
• Innumerable scans
• Treated for the most part with fulvestrant (monthly shot) and Ibrance (a life-saver).
• Had a TAVR procedure for aortic stenosis to replace a defective heart valve. (May 22, 2023)

The TAVR procedure went incredibly smoothly. It's like getting a stent placed in your heart by way of a vein in your groin. You spend the night so they can monitor you carefully. If all is well, you are discharged in the morning.

Five weeks later I've had my followup with the surgeon, including an echo. It's amazing how much my shortness of breath has improved post TAVR. They suggested that I follow up with 12 weeks of cardiac rehab, which I just began. 

I've also been able to take my bike out for a couple of rides -- once on the Little Miami Bike Trail and once to our Saturday meet up at the Italianette. It was great to feel "normal" once again.

If someone told me that I'd still be here three years later, I don't think I would have believed it. I doubt my doctors would have believed it either. But here I am, feeling strong and grateful. We'll see how long we can stretch this out.

Oh, and by the way, my lovely daughter turns 45 tomorrow. I am so blessed.

Kathy

Update:

I'm suffering from a terrible cold. A few days ago, Cincinnati was enveloped in smoke from forest fires in Canada. The air quality was horrendous. See below. I developed difficulty breathing (no surprise there) that has progressed into a pretty bad cough. Thankfully, rain has come through and cleaned up the air to an acceptable level. Hopefully, my breathing will be back to normal soon.

March 6th to April 26th, 2023 - New Challenges

 

The Good News

In a few days, I will celebrate my three-year "cancerversary" -- a date I originally thought I would never see. I feel pretty good. My last three CT scans have shown that my cancer is "stable." But I've got complications.

The Not-So-Good News

I mentioned in my last post that I had been diagnosed with severe aortic stenosis. My cardio-oncologist referred he to a valve clinic to see if I would be a candidate for valve replacement. Both my cardiologist and oncologist did not think I would be a candidate for an open-heart valve replacement as I have a lot of scar tissue from my chest cancer surgery.

There is a procedure called (TAVR) where they send a replacement valve to your aortic valve by way of an artery in your groin -- similar to what happens with stents for clogged heart arteries. After undergoing a cardiac CT and visiting with their thoracic surgeon, I got the word that I've been approved. Surgery is scheduled for May 22nd. This should really help with shortness of breath.

My visit with my oncologist presented me with an additional concern. The cardiac CT showed that I had some "ground glass opacity" in my lungs. This just looks like a shadowy overlay in my lungs. She explained that this is caused by one of three things: 1) infection, 2) inflammation or 3) cancer. She quickly added that it didn't appear to be cancer. This condition is a rare (about 2%) complication of taking Ibrance, so I've had to stop taking it until further notice.

So I started on a round of antibiotics to take care of the possibility of infection. (I don't think that's the problem). On May 10th, I have to get another CT to see if there is improvement. I see my oncologist on the 11th. The goal is to get my lungs healthy before the valve replacement. At this point, I'm just glad that I'm still on the list. 

I also have a history of Afib, that may or may not be related to the aortic stenosis. I have a referral to an Afib clinic this Friday. I hope all of these developments keep me on track for replacement. I was told by both specialists that I have less than a year if the valve can't be replaced.

I Am Not Depressed

As the surgeon said, your treatments may have contributed to your complications, but you've had three good years -- and they are going to try to mitigate these issues as best they can. I can only hope for a few more good years. Enjoy what you've been given.

Kathy

December 7th to March 5th 2023 - New Year, New Challenges

 

At this stage of my life, I am excited about every extra six months I get. My oncologist, who is reluctant to offer a prognosis, is willing to say when she is confident I'll be around another six months. Such was the prognosis in December. I happily said that gives me a new year, an additional birthday and even a third anniversary of my cancer journey.

We immediately started making plans to visit my sister in Mt. Dora, FL in mid-February. We love visiting Karen because, in addition to her kids' company, we can leisurely decide what to do when. Even our dog, Adie, loves staying with her.

This year we decided to take the canal boat tour in Lake Dora. I can't recommend this enough. The flora and fauna were amazing. We were joined by cousins Barb and Jim Pharo, pictured below. We rode our bikes on the Wilderness Nature Trail where we encountered numerous bird species and alligators. We traveled to Clearwater to visit Julie and had a great lunch at an oceanside restaurant followed by a visit to a local state park. The weather was great for the 10 days we were there.

The Health Update

My most recent CT scan still described my cancer as "stable." The drug regimen I am on is working for now. The same CT scan, however, identified that my previously identified "moderate aortic stenosis" had progressed to "serious." I visited my onco-cardiologist who scheduled me for an echocardiogram so he could compare results to last year's echo. Not only did it also identify "serious" aortic stenosis, but I experienced atrial fibrillation (AFib) throughout the procedure.

If you are unaware, aortic stenosis, I've included an image and a link to an explanation:

What is aortic stenosis?

Atrial fibrillation is an irregular and at times very rapid rhythm (arrhythmia) that can lead to blood clots in the heart. This increases the risk of stroke, heart failure and other heart-related complications.

Next Steps

My doctor is referring me to a stuctural heart valve clinic and an Afib clinic. Their job will be to determine whether or not valve replacement is the best choice for me. There are many options to be considered.

So spring is in the air, I'm feeling pretty good and I plan to carry on -- at least in six-month increments. I hope this finds you well.

Kathy

September 2nd to December 6th - Answers, Answers and More Answers

 

It's been more than two months since I updated this blog. I felt like I had nothing to say. I've been feeling pretty good. Yet I was feeling "unsettled." When you have "comorbities" it's difficult to sort out what symptoms come from which health concern. Not only do I have cancer, but I have issues with my heart. These include afib, and significant calcifications in my aortic valve and root.

I'm now on my 5th round of Ibrance and tolerating it surprisingly well. This drug is designed to slow the progression of my type of cancer. It must be working. I want to thank those who convinced me to give this drug a shot. (You know who you are).

Since September I've had a mammogram, targeted ultrasound, total body bone scan and a CT scan. I had a clear mammogram and the findings for both the bone scan and and CT described my cancer as "stable.".

I met with my cardiologist last week and he scheduled me for an Echo in February so we can measure any changes in calcification in my aortic valve. I may eventually be a candidate for a valve replacement. But how does this square with Stage 4 cancer?

Today I met with my radiologist and got nothing but good news. Despite having radiation fibrosis, it, too, was described as "stable." She reviewed CT scan images with me and answered all of my questions. She said that my Stage 4 cancer is different from other Stage 4 cancers. The involvement of my sternum is indicative of a small progression from my chest wall. Typically, cancer spreads through blood vessels or lypmph nodes, which she said is not what has happened in my case. She claims I could live for years if my medications are able to keep my cancer "stable." I never knew what a wonderful word "stable" could be.

So I'm going to shift my focus to Christmas and other end-of-the-year celebrations instead of "waiting for the other shoe to drop." I realize how blessed I am to have such a wonderful team of doctors who treat me as an individual and not just my disease.

Decorating is hard for me, but I at least managed to get something together. Here is the outside of our house. Now all I need is a fire in the fireplace and the company of my husband and our dog.

I wish all of you who have shared this journey with me the best the holidays have to offer. Blessings to you, your families and all who are struggling with their own health battles. Love you.

Kathy

August 7th to September 1st - I Am So Happy!

 

I always look forward to September 1st. As a long-time teacher, September has always represented the excitement of a new school year. The days get a little cooler. My idea of "perfect" weather is one where you don't need air conditioning or heat. 

I'm also happy because I am now on my second round of treatment with Ibrance. This drug is designed to slow down cell growth. It impacts cell division in both healthy and cancerous cells. It does have known side effects, but I seem to be tolerating them fairly well (as opposed to my experience on Verzenio).

It costs a lot of money to keep me going. The list price for 21 Ibrance pills is $13,000 plus. Add to that the cost of my monthly injection of fulvestrant ($740). This does not include the cost of bi-weekly doctor visits and blood draws. Luckily for me, I "only" have to pay $297 a month for Ibrance and a $25 deductible for the fulvestrant. I really don't know how people with fewer resources do it.

I'm just grateful for these additional days with good quality of life. So celebrate with me. There are many beautiful fall days ahead.

Kathy

August 7th - A Time of Transition- Part II

 

The Tipping Point - Health Update

Last September, I had a discussion with one of my surgeons who had just done a surgical biopsy on my breast. Although all of my doctors agreed that I had cancer in my chest wall, the pathology report did not confirm that. (An additional biopsy at Ohio State did confirm "mucin" in one of their samples, but individual cells could not be stained). 

I asked my surgeon what I could expect. I had to laugh when he said "pain", because I had honestly kept the thought of pain off of my radar. So I write this post almost as a "marker" in my cancer journey. 

I started taking Ibrance a week ago Friday after much reluctance. Luckily, I haven't seemed to experience any of the negative side effects I did on Verzenio. Ibrance belongs to a class of drugs designed to inhibit cancer cell reproduction. 

I realized this morning that most of the pain I am currently experiencing is within my breasts/chest wall and not from the bruises from my recent bike fall. This is new and I don't know if the medication is playing any role at all. We'll just have to wait and see.

So this post is short and sweet. 

Kathy

July 17th to August 7th - A Time of Transition - Part I

 

The Tipping Point

I am approaching the two-year anniversary of my major chest reconstruction (August 19th). I have been truly blessed during the past two years. I've been able to travel (Utah and the Canadian Rockies), take a few bike trips (West Virginia, Virginia, and the GAP Trail in Pennsylvania), and have wonderful life experiences with my family and friends. All of this has happened with no pain, despite my acknowledgement that I do in fact have breast cancer that has also invaded my chest wall.

In an earlier post, I acknowledged that my oncologist advised me not to ride my bike any more. I was devastated as this is my "happy place." After I got over the shock, I spent a couple of weeks trying to find a bike that would enable me to ride more safely with fewer balance challenges. I considered a trike, but was surprised to read how often people tip those when riding around a corner at too great a speed. I settled on a Rad Enhance5 that has a lower center of gravity and fat tires -- the combination upping the chances that I would not fall. Here is a picture:

Bill and I put it together, taking care that the handlebars and seat height were comfortable for me. For two days, I rode it to the bakery with no problem. On the third day, I decided to ride it to my oncology appointment, a trip of 15 miles when combined with a bakery stop. Things were great -- I even told my doctor of my new purchase. BUT my luck was about to run out.

Shortly after leaving the doctor's office (luckily riding on a bike path vs the road), the handlebars slipped. Bill and I had forgotten to tighten down the handlebars once we agreed on positioning. They slipped forward, and when I tried to correct it, the handlebars actually rotated 180 degrees, making it impossible for me to grab the brakes. Down I went, and this fall was hard.

Two wonderful women stopped to try to help, as did a man with a pickup truck. They picked me up and the man put my bike in the back of his truck and drove me across the street to a picnic shelter so I wouldn't have to wait for my husband in the sun. Bill arrived and was more than a little irritated with me as he thought I was riding to the Christ Outpatient facility in Montgomery (four miles) and not all the way to Mason (15 miles on the road). I was bruised and the pain was pretty significant, but that is to be expected.

Unfortunately (or fortunately) I had to tell my lovely daughter, Liz, about the fall because we had tentatively planned to go to Columbus on Sunday. She called my oncologist's office to tell them of my fall. The next thing you know, I get a call advising me to go to an Urgent Care because I take blood thinners. The doctor at the Urgent Care wanted me to go to the ER because he felt a CT scan of my brain was in order. Otherwise, I could have an undetected brain bleed. (I was wearing a helmet). All tests came back negative. It was just going to take time for me to heal, and boy has this past week been a week of pain and healing.

Once again, I was advised NOT to ride my bike. So the question is, am I stubborn or stupid?

But wait -- there's more. Read Part II for an update on my cancer journey.

Note: I've mentioned before that writing this blog is therapeutic for me. I really appreciate all of you who are on this journey with me. Thank you. It means a lot to me.

Kathy

July 17th - The 100th Anniversary of My Mom's Birth

 

It's been a tough day!

I'll be honest. I've been on the verge of tears all day. It's my Mom's birthday anniversary. She would have been 100 years old. We were really close my whole life, and today I miss her. I wish I had been able to talk to her more about her cancer experience. She always seemed to take it in stride. 

In about September or October of the year before she died, my mother knew that her breast cancer had returned. She lost about 35 pounds in two months. Sixteen years before, her doctors had predicted that she had about nine months. Sixteen years and two husbands later (my Dad died at the young age of 57 of cancer), my mother was sure she was having a recurrence. Multiple scans and tests could not confirm it. Fun Fact: It takes about one billion cancer cells to form a 1 cm lump that can be detected by most of our technology. https://tinyurl.com/4hp4ntdj See paragraph 7. When she was finally diagnosed, it was in her brain, stomach and bones. One of my surgeons explained to me that I, too, could have cancer throughout my body that is not yet detectable. Who knew?

By December, there was no longer any doubt. My mother asked me to come to her house and help her label some of her things for distribution among my siblings following her death. I have five brothers, so you can imagine there weren't going to be a lot of things they would want. For instance, I doubted they wanted one of her many dolls. While we were working, I expressed my feeling that her husband would be reluctant to do "what she wanted" because he would want to her to hang in there and I knew she valued quality of life. She said he would respect her wishes. I won't go in to detail, but suffice it to say, that I think she was "tortured" her last few weeks of life.  As things progressed, she said she didn't want a feeding tube, but he overame her reluctance. (It is because of my first-hand observation of her quality of life post-feeding tube, that I've had it put in my medical record that I do not want one).

I remember one of the last real conversations we had. I was scheduled to go to Wyoming for a two-week science course in July and was debating whether or not I should withdraw. She asked me when it was. When I gave her the dates, she said there would be no problem "as it all will be over by then." She died on June 28th.

My stepfather tried to limit our visits. I think it was because we had accepted her eventual death and wanted it to be as comfortable as possible. He had lost his first wife to cancer and felt that perhaps he had not done everything possible to save her. He wasn't making that mistake again. If I'm honest, part of me was grateful because I really didn't want to be too involved in the every day dying process. But now I wish we could have a conversation. How did she maintain her overall positive attitude up to the end? How could she think of others needs (like my desire to take a course) when she KNEW she would die soon? 

Sometimes, it is the happy thoughts that bring tears to my eyes. About 8 months ago, my cousin Jim Ryan and his wife Karen, digitzed their old family movies. They shared one with me from 1948. It had been filmed by Mom's brother, Jim, who is featured at the end of the clip. My Mom and Dad were newlyweds. As I was born in April 1949 and the movie was shot in August, I was probably conceived that month. Here is a link to a one-minute movie of my Mom in front of their apartment, At that time, life was very exciting, with all of the possibilities of their lives before them. 

Click on this link for video: https://youtu.be/ReFMiGF-_Gg

Mom, thinking of you today. Hope you are thinking of me. I need some advice.

Kath

July 11th - The Dreaded Health Update

 

Background

In June I was scheduled for both a bone scan and a CT scan to assess if my treatment plan needed to be adjusted.

The bone scan did not appear to have significant changes. The major difference is that previous reports did not mention "faint uptake in the medial left clavicle."

Next up was the CT scan. This wasn't quite as optimistic.

In previous studies, the radiologists have mentioned how difficult it can be to measure the "soft tissue mass." However, the radiologist noted that the mass had increased in measurement by 3 mm. Of more concern to me was the second sentence which noted that the mass "appears to extend through the chest wall and into the pleural space and is suggestive of invasive neoplastic process." He also noted that there was "worsening of the underlying pleural" and "extensive intrathoracic involvement." Here is a comparison of the March and June images:

My daughter, Liz, accompanied me to the followup appointment. The weekend before, I had my 70-pound bike fall on me as I tried to dismount. I tried to break the fall with my arm and had experienced a fair amount of pain over the following couple of days. This, in combination with the falls I had on our bike trip led my doctor to suggest that I no longer ride. I felt like crying.

She also ordered up an immediate brain MRI to see if the cancer had metastasized to my brain. Thankfully, it had not. However, the report did note "moderate chronic small vessel ischemic white matter disease." My limited reasearch indicated that this can contribute to balance issues in older adults." If I'm honest with myself, I know my balance is not quite what it used to be.

After reviewing these results, my doctor suggested that I consider taking Ibrance at a lower dose. She had a nurse educator call me. Among the side effects she mentioned were impacts on white blood, hemoglobin and platelet counts. You are more susceptible to infection and I'm to call if my temperature exceeds 104. It can lead to increased fatigue and poorer liver function which they will monitor carefully. In rare cases, the medication can lead to interstitial lung disease.

I had previously refused this medication because it is similar to Verzenio which I stopped due to side effects. I am stressed about what to do, although I said I would "try" it and see. Now I'm second-guessing this.

So there you have it. I think I'll let my mind travel back to Canada. Here is one of my favorite pictures from that trip.

Peace to all who are sharing in my journey. I appreciate you.

Kathy