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