January 12th, 2025 to June 8th, 2025 - It's Been an Interesting Five Months - Part 3 - Things Are Looking Up

 

May and June

I was released from the hospital on April 10th. My sister, Karen, stayed with me that first week. I was still very weak and we worked every day for me to become more independent. April was a month of steady improvement. I had a visit from the Palliative Care nurse who explained that, as a rule of thumb, patients generally take seven days for each day in the hospital to recover. In my case, that would have been 35 days -- and that proved to be pretty accurate. Improvement was gradual but significant.

What changed:

• I gradually was able to take more steps and accomplish simple tasks such as preparing breakfast, climbing stairs, etc.
• My pulmonologist had put me on a C-PAP, designed to keep my airways open during the night. My breathing improved to the point that I could now walk without gasping for air.
• In discussing my case with my doctors at the Cleveland Clinic, I found out that their committee had decided that I was not an appropriate candidate to undergo robotic brancheoplasty. Their main concern was scar tissue and adhesions from my chest reconstruction surgery. To quote the surgeon, this would make a "tricky" surgery even "trickier". I was in agreement with their decision as I felt I could no longer recover from such a difficult surgery.

Meeting with My Oncologist

As I got stronger, a decision was going to have to be made as to whether or not I would restart my cancer medications. During my recovery, I had monthly blood tests that indicated a gradual and significant improvement over time. For the first time in over two years, all of my results fell within the normal range. I no longer was anemic. Even my "cancer marker" test results fell in the normal range.

My cancer treatments, Ibrance and fulvestrant shots, are known to lower immunity, increasing the likelihood of infection. My red and white blood cells were reduced as well as my platelet count. I've always know of these side effects, but in balance, my cancer had been held in check for nearly five years. Taking the drugs was clearly worth it. So what to do?

Dr. Specht and I met, and the decision was made to hold off on restarting the cancer drugs for at least another six weeks. At that time, I will have a CT of my chest to see if there are any changes. We can then revisit this topic.

My Current Status

This month I celebrated five years since my initial diagnosis. Here is one of my favorite pictures.

Liz, me, Bill and Adie

It was taken the day after my lumpectomy June 30, 2020. This was an outpatient procedure and I obviously recovered quite easily. Unfortunately, they discovered during this procedure that there was much more cancer in my chest wall. This meant that a future surgery would need to be scheduled. I wrote about it earlier in this blog.

BUT I'VE NOW SURVIVED FIVE YEARS!!! Bill and I have been able to travel extensively during this time and I've been able to watch my grandsons grow. I have so many things to be thankful for -- and I am. Who knows, I may get well enough to travel again and, dare I say, ride my bike. And I have all of you who have read this blog and offered me encouragement. Thank you.

Kathy

January 12th, 2025 to June 8th, 2025 - It's Been an Interesting Five Months - Part 2

 

March and April

As March began, I had no reason to expect any changes in my health. Boy, was I wrong. I had settled into a "normal for me" situation where I got tired easily, had difficulty breathing with any kind of exertion, with some level of weakness. Around March 16th, I stood up to get out of bed and slowly fell to the floor. Bill had to contact two of our neighbors, Don and Georgia, to help him get me up off of the floor. I really didn't think much of it as I did not experience any pain.

Bill kept telling me my back looked awful, but I didn't pay attention as I felt no different and was not in pain. A couple of days later, I finally looked at my back and knew I had to call my doctor. They got me in with the PA the next day. She conveyed to my oncologist just how bad it looked andd I was told I needed to go to the ER immediately.

It looked like I had been abused. The black patch in the lower left-hand corner was not a birthmark. This was taken five days after I fell.

In the ER, they spent several hours running multiple tests including CT scans in search of clots, numerous blood tests, etc. The doctor barely looked at my back. Test results indicated that my kidney function was slightly impaired. After being told that I could be admitted under "observation" we agreed that I would go home because of the possibility of picking up an infection in the hospital. I had to promise to get a repeat kidney function test two days later. 

I returned to my oncologist two days later to get the repeat kidney function test. An observant nurse told Dr. Specht that I looked very weak. She was told to take me to an exam room. Dr. Specht took one look at me and told me that I had cellulitis with an infection and needed to go back to the ER.  She asked me what I thought was going on. I told her I thought I was dying, and she agreed. Back to the ER I went. She called the ER on my behalf and told the doctor she didn't want me in the waiting room. Yet I ended up waiting for three hours.

Once they examined me, I was admitted. It was determined that I did have cellulitis and a blood draw proved that I had a Staph G infection. Apparently, the fall enabled bacteria that is normally on your skin to get into your bloodstream. Things were getting serious. After a four-night stay, they could no longer grow Staph in the petri dish. I had been on massive IV antibiotics. They inserted a pic line and scheduled an Home Care Nurse to come to my home and teach me how to administer antibiotics at home. I was feeling better.

Then the Other Shoe Dropped

Over the next couple of days, I became increasingly weak. By Friday of that week, I slept in my recliner the whole day and felt too weak to even call my doctor to say things were not going well. I managed to get up to bed that evening, but slept in my clothes. The next morning, I got up and threw my clothes down the clothes shoot. Then I collapsed, without memory, onto the bathroom floor. When I came to, I called to my husband and asked him to bring me two pillows. I'm glad I couldn't see his face. He brought the pillows, I thanked him, and he asked if I thought I needed to sit up. Hadn't occured to me. Bill called the life squad and back to the hospital I went.

This time I was admitted without delay. Not only was I weak, but I couldn't control my body temperature, alternating between running a fever and having chills. Here was my initial assessment:

    1. Sepsis. present on admission. Meets SIRS criteria (temp 103.1 degrees, HR 124), favor viral sepsis

    2. Bacteremia due to Streptococcus

    3. Generalized weakness

    4. Metastic breast cancer, stage IV, stable disease

        Ibrance (oral cancer drug) on hold due to recent infection/bacteremia            

I was definitely sick.

Pro Tip - How to Know the Hospital Suspects You Might Die

In the morning of my second day, the "Hospice Doctor" came to my room followed almost immediately by the Chaplain. I had not requested either one. My lovely daughter, Liz, was in the room. We discussedthe options after discharge from the hospital, including hospic. Liz said to the doctor, "AI understand that to qualify for hospice, a doctor has to sign off that they believe you have less than six months to live. Are you willing to sign that you think my mother will die within six months?" He said, "Yes." That was a shock. Two women associated with hospice came in and went over the details and I had to initial my agreement. 

I started feeling better and my gatekeepers, Liz and Karen, told the rest of the family that I was good enough to have visitors. Ted and Rian came first followed by several others later.

Ted, Rian and Harrison (abs)                                  Dan, Karen, Carol, Bill, me, Tim, Dusty

During my first hospitalization, I was worried that I would not live to see two of my goals come to fruition. On April 1st, I was going to be 76 years old. My daughter, Liz, had asked me to live to see her receive her Executive MBA on April 11th. Well, I wasn't well enough to attend Liz's graduation, but I made that 76th birthday. 

Under treatment with IV antibiotics once again, I began to improve. As no bacteria could be cultured,  the cause of this hospitalization is still a mystery. Eventually I was informed that I did not yet "meet the criteria" for hospice care. This was due largely to the fact that my scans for breast cancer showed "no sign of active disease." How ironic. After five nights, they sent me home instead on Palliative Care. So what would happen next? Read about it in Part 3. Thanks for following along.

Kathy

January 12th, 2025 to June 8th, 2025 - It's Been an Interesting Five Months - Part 1

 

January and February

It's hard to believe all I've experienced in the past five months. In the latter part of 2024, my inability to breathe with any kind of exertion was becoming a real issue. I was diagnosed with EDAC (Excessive Dyanmic Airway Collapse) which means that my airways are "floppy" and do not stay as open as they should when I exhale. I was referred to the University of Cincinnati Pulmonary Lab but was hesitant to accept their recommendation for surgery because it could not be done robotically there.

I made an appointment with the Cleveland Clinic. They had a different approach and required a substantial amount of testing -- some of it was a repeat of tests I'd already done. Bill and I traveled to Cleveland mid-January and met with doctors who put together a care plan. A dynamic CT concluded that my collapse was significant and scheduled me for a return trip in February.

My sister, Karen, came to Cincinnati and was with me when I returned to Cleveland to have followup, including a bronchoscopy. 

Overall, the severity was ranked as S4: expiratory airway collapse of >90%

Problem identified. My difficulty breathing with any kind of exertion had a reason. I was not crazy.

The "Torture Tour"

As I mentioned earlier, my sister, Karen, accompanied me to Cleveland. She lives in Mt. Dora, FL and is no longer used to cold temperatures. They open "cold shelters" when the temperature gets below 40 in her community. To say we didn't have the best weather for her visit was an understatement. You can see Lake Erie frozen over in the backgroundl. Here was the forecast.

Karen had the job of driving us back. The first half was pretty harrowing as we drove though snow, slush and freezing rain. We passed several cars in the median of I-71. Fortunately, it became all rain by the time we reached Columbus. Just wanted to give Karen an adventure.

Tessa and Brandon's Wedding

We were planning on traveling to Colorado on February 21st to celebrate Tessa and Brandon's wedding. Unfortunately, Bill and I had to cancel because of concerns about my breathing and difficulty walking. Pictures and videos were shared with us and we know we missed a great time. Tessa gave me permission to share a couple of pictures.

So now onto March. Since I've already lived through it, I know I'm going to be in for an adventure. More to follow.

Kathy

August 12th, 2024 to January 11th, 2025 - It's a New Year

Another five months have gone by without a post. A lot of things have become much clearer. The election is over and Donald Trump will soon be inaugurated as our 47th president. This past week the funeral for President Jimmy Carter was held. I finally know what's been responsible for my "neverending" shortness of breath. But before I get into that, I want to talk about my family.

This past week we got about 11 inches of snow over a two-day period. Compare this to last year's total of 0.9 inches. We have a driveway that has a fairly steep grade. One of our neighbors helped shovel us out, but we left the lower half of the driveway and my car pretty much buried. In addition, the bottom inch or so turned to ice.

My cousin, Patty, just wrote a facebook post on how hard it is to ask for help. It must be a "Jones" thing. Luckily, my brother, Don, offered to help. In addition, he contacted brothers Tim and Dan to see if they were willing to assist. Yesterday, the "three amigos" showed up with shovels, leaf blowers and rope in hand.

It's a good thing that Tim had some of our Dad's rope in his truck because shoveling was not enough to get my car up the driveway. They had to connect it to Tim's truck and give it a good pull. It made me feel so grateful to know that when I need help, they are just a phone call away. 

Health Update

On September 2nd, Bill had to take me to the ER. I was short-of-breath just sitting in my chair. They ran multiple tests including a CT scan, blood tests, etc. I was diagnosed with NSTEMI, a type of heart attack usually characterized by partial occlusion or temporary disruption of blood flow. My cardiologist ordered several tests, including a lung function test and angiogram, that were basically normal.

I asked for a referral to a pulmonologist because of ongoing shortness of breath. After several tests, he suggested a bronchoscopy. Imagine my surprise when he said, "We found something." I was diagnosed with EDAC (Excessive Dynamic Airway Collapse). My two mainstem bronchi collapse upon exhalation -- so I can breathe in oxygen but my airways collapse when exhaling. I have a predicted 91% blockage which falls into the "severe" category. That explains my ongoing shortness of breath.

Next Steps

I have an appointment with an interventional pulmonolgist at the Cleveland Clinic on Friday the 17th. These are the next steps: 

• Go to the Cleveland Clinic for a "dyanmic CT" which will confirm the EDAC diagnosis.
• Meet with their interventional pulmonogost.
• If diagnosis is confirmed, I will be scheduled for a "stent trial." Stents will be placed in my trachea and bronchi to see if my beathing improves.
• If the results are positive, they will determine if the next intervention will be a robotic surgery (tracheobronchoplasty) that will not be easy. Warning: If you want to know the specifics, click on this link:

https://consultqd.clevelandclinic.org/robotically-assisted-tracheobronchoplasty-a-case-study

The Bottom Line

I am feeling good but feel very limited in what I can do. I've hired someone to clean the house as it was becoming more and more difficult. I'm enjoying being warm and comfy in my house, especially if I can find a good series on a streaming service. We will make it through, thanks to the support of friends, neighbors and family when needed. I'm thankful.

Kathy

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.