January 7th to August 11th, 2024 - On the Record

It's been more than six months since I posted to my "Breast Cancer Journey." So what is the explanation? Truthfully, I've been struggling with a mild depression. It's been hard for me to define much less explain it to myself. It wasn't like I didn't try to understand it -- it seemed like I couldn't think of much else. So here is what I know:

• I worry about my health (although most of the time it's for no identifiable reason).
• I worry about my lack of motivation. I'm coming up on four years since my major chest reconstruction and sometimes feel like I'm not taking full advantage of the additional life I've been given.
• I worry about my husband. In May, Bill celebrated his 88th birthday. He is amazing but is coping with depression himself and some physical and mental limitations.
• We had to put Adie down in May when she was becoming increasingly disabled with Cushing's disease. It was becoming very difficult for her to walk and she seemed to have some pain. We both miss her so much and wonder if we let her go too soon. It's so hard.

So what has given me joy?

• I truly value all of my family. On the 4th of July, my brother, Dan, and his wife, Carol invited everyone who was available to a picnic at their house. Their son and daughter-in-law, Chris and Sarah, were going to be in town. With few exceptions, we were able to make it. Here is a picture of the group.

Credit: Mark Jones

• My daughter, Liz, son-in-law, Roland, and grandsons, Ian, Andrew and Nathan are a constant source of joy. I am so proud of all of their accomplishments. I don't know how they do all that they do. My daughter, against my initial concerns, is more than half-way through an Executive MBA program at Ohio State, in addition to keeping up with her full-time job and schedules of her three sons. Roland, too, has risen to the challenge despite all of his job responsibilities. Ian, now 16, is driving. It is a whirlwind.

• I have really enjoyed reading. My Kindle is my life. I have read so many books from so many genres over the last six months. They've truly expanded my world.

Part of the reason I write this blog is so that my grandchildren will have a clue as to who I was. Anyone who knows me knows that I am somewhat of a "political junkie" and openly admit that I consume way too much news. I know it impacts my mood, and not in a good way. My friends and family know my political views. I try to respect and listen to those whose views differ from mine. But I recently had a revelation. You may choose to stop reading now, but I want my grandchildren to know my authentic self. So if you continue reading, you've been warned.

My Latest Revelation

We are 85 days away from the Presidential Election. I have been a supporter of President Biden and his administration. However, living through the aging process myself, I was becoming increasingly concerned about Biden's ability to serve four more years. Then the whole country was subjected to about three weeks of uncertainty as politician after politician tried to convince Joe Biden to drop out of the race. Behind the scenes, other politicians were trying to figure out who could run in his place. Several were personally trying to "go around" Kamala Harris because, as we all know, it's difficult for any woman, much less a woman of color, to break through in this society. But Joe came out in support of his Vice-President, Kamala Harris, as his successor.

Within a couple of days, she had garnered so much support that no one would dare challenge her. Her first task was to choose a running mate. She chose a little known Governor of Minnesota, Tim Walz. Tim is SOOO middle class. In addition to being a high school teacher and coach, he and his teacher wife had to resort to using IVF to become parents of a boy and a girl. He also served in the Army Reserve for 24 years, got elected to Congress serving for 10 years before running for Governor. The bottom line is, the two of them have brought "joy" back into politics.

Within a few short days, I realized that was what was missing -- JOY!!! And it seems as if the whole world was in a funk and didn't know why. Now we do. And now we have HOPE that we won't have to live through another four years of Trump. 

I don't know what's going to happen, but I'm going to pray for our country and do everything I can to be hopeful for peace and recovery within our country.

Sincerely,

Kathy Reed

Grandma

Robert Joseph Hellmann - Obit

 

September 21st to December 17th - My Ex-Husband Died This Morning - Of Cancer, Of Course

 

In Remembrance of Robert Joseph Hellmann

March 31, 1943 - December 17, 2023

Robert (Bob to me) is my ex-husband and father of my beautiful daughter, Liz. He was diagnosed with bladder cancer and had surgery to remove a tumor in 2018. He was in remission for five years. When it reoccurred, he had surgery to remove a large tumor. Scans indicated that the tumor had invaded the muscle wall. He chose not to treat it aggressively, as treatment would not result in much increased longevity.

As both of us value quality of life, our main prayers were for a peaceful transition. Bob experienced the very definition of a "good death." They signed up for home hospice services, and his wife, Janet, was faithfully at his side. During this past week, it was clear his days were limited. My daughter has given me permission to share some of her Facebook posts from the week.

Bob suffered from severe anemia in his final days.

 

Bob and I "FaceTiming" two days before his death.

Liz and Ian visiting with Grandpa yesterday.

Shortly after Liz and Ian left, Bob suffered a mini-stroke. For the first time, the hospice nurse helped him to his bed where he remained. He experienced some pain this morning but was still able to converse with Janet. By 9:00 am, he had died. I know from our converstation (based on his beliefs) he was looking forward to the trip.

I want to recognize his wife, Janet, who has dealt with every aspect of his care over the past few months. I know Liz is suffering, but also consoled by his relatively pain-free and quick death. All of us will find consolation in this in the days to come.

When the funeral home came for his body, they draped him in the American flag as he had served in Viet Nam in the Infantry. I'm glad for the honor, as the war experience affected him throughout his life.

When my time comes, I'm hoping for an equally peaceful transition. Meanwhile, Bill and I are going to celebrate life and head to Texas by train in the next few days. Hoping for a blessed Christmas for all of us who remain.

Kathy

August 18th - September 20th - Riding My Bike

 

Riding My Bike

Everyone who knows me knows that I REALLY enjoy riding my bike. This has been true since I was a kid. It's not been a problem-free preoccupation as I've fallen a few times. Anyone who rides knows how this is just a fact of life. I try to be as careful as I can wearing a helmet with a flashing light, a "safety-green" vest, and an e-bike with 4" wheels for greater stability. I know I'm riding "against medical advice" but it truly wards off depression and makes me feel "normal." As I have repeatedly said, any day I ride my bike is a day I'm not going to die of cancer.

The weather has been beautiful the last couple of weeks and I've been able to ride almost every day. I was patting myself on the back yesterday as I rode to my podiatry appointment. The rehab staff ask frequently, "What are you doing for exercise the days you are not here." So I had a smug little feeling that I could once again say that I rode my bike.  

Until this happened (copied from my daughter's Facebook post):

So I'm happy -- and nothing's going to get me down today. Five weeks from today, we get to leave for our riverboat cruise on the St. Lawrence River. See previous post. And I'll be riding my bike in the morning. Thinking of all of you who take the time to read my posts. You are appreciated.

Kathy

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