September 29th to October 24th - A Change in Direction

Update

My new oncologist ordered a Guardant Test, sometimes referred to as a "liquid biopsy." It is designed to pick up levels of circulating tumor DNA found within my bloodstream. It uncovered one mutation in the BCRA2 gene (meaningless) and a tumor burden that was too low to be meaningful. However, in light of the other scan evidence, she felt that I should begin a fulvestrant + verzenio treatment regimen so as not to regret not doing it in the future.

It’s hard for me to do this because I continue to feel good. I’ve been told that the side effects (hopefully) will be manageable and probably worse in the first month. As three oncologists have recommended this, I’m going to give it my best shot, knowing I can stop it if it messes too much with my quality of life.

My oncologist has also ordered a CT Scan to serve as a baseline. That happens November 1^st. I’ll let you know if there are any interesting results. I'm thankful for my many blessings.

As I mentioned in my last post, my husband and I had breakthrough Covid, as did about eight people in our circle of friends. In all cases but one, we received the monoclonal antibody infusion, and recovered quickly. One of our friends did not get it because he was unsure of when he was exposed and, though hospitalized, his doctors felt that it was too many days from exposure. After struggling for more than seven weeks, he died this past Friday. He had no underlying health conditions. We are heartbroken.So let this be a warning -- if you get breakthrough Covid, please insist on getting the antibody infusion. It could save your life.

I've made the decision to eliminate all of my genealogical commitments. I will no longer agree to be a speaker and have resigned from being a Board member on the Hamilton County Genealogical Society. I'm also giving up my DNA Interest Group and will be closing down a group on Gedmatch. I find that as much as genealogy has been a 20-year passion, I can no longer keep up with all of the advances in genetic genealogy and do not have the interest in getting up to speed in this ever-changing field. I am selfishly focusing on myself. 

Thanks for being a part of my journey.

Kathy

August 15th to September 28th - It's Been an Adventure

I haven't posted in a while because I was SURE I'd know something by now. Instead, the roller coaster has continued with a twist. Bill and I and two friends got breakthrough COVID! Bill was not doing well and went to the E.R. where he was able to get an infusion of covid antibodies. With the help of my daughter, I was also able to get the infusion by driving to Columbus after my Ohio State oncologist ordered it for me. My case was not bad. Bill improved a lot about 48 hours after receiving the antibodies. However, one of our friends has been in the hospital for the past month spending part of the time in the ICU on a ventilator and requiring additional time in the hospital to regain his strength. 

I switched oncologists as my very capable oncologist was a victim of his own success -- you often had to wait a couple of months to get in to see him and I was increasingly uncomfortable with that. The night before I was supposed to see my new oncologist, I "threw my back out" after walking my dog. When I arrived for an appointment the next day, I was still unable to stand up straight. That raised some red flags with my oncologist who feared that my cancer may have metastasized to my spine (a common secondary site for breast cancer). There was no use discussing "the plan" for my treatment without answering the question of spread, so my appointment was cut short while the staff tried to arrange an MRI.

The MRI proved that I have a really bad back, not news to me, but no sign of cancer. I guess I really didn't appreciate all that has happened in the past year until my daughter posted this on facebook.

So with this under my belt, it was time to "go on vacation." Bill and I wanted to ride the Greenbrier Bike Trail in White Sulphur Springs, West Virginia. In two days, we rode 60 miles. The second day it rained most of the day, but Bill was able to buy a couple of ponchos that made the last 11 miles tolerable. The final day of our getaway, we traveled 71 miles by car to ride on an authentic steam train.We also saw the largest steerable radio telescope in the world at the Green Bank Observatory. Unfortunately, the Science Center was closed on Wednesday, so we would like to return.

On the way home, we stopped by the New River Gorge National Park. The region became a National Park in 2020. The park ranger suggested that we get a good view of the bridge by taking a one-way 8 mile drive. He said to anticipate spending 45 minutes on the drive. Since we knew we had more than 300 miles ahead of us, we again decided to save it for another day.

If you've ever considered going to this part of our beautiful country, take the plunge. You will not be disappointed.

New River Gorge.West Virginia

July 7th to August 14th - Guest Poster Liz Varga (my lovely daughter)

 

During the last few weeks, I had two more biopsies -- one in Cincinnati and one in Columbus. I got a second opinion from a team at The James Center at Ohio State University. Their findings verified  everything that had been done for me in Cincinnati. They added a couple of additional tests.Yesterday we had a televisit with Dr. Stover to summarize the team's findings. Rather than write them up myself, I'm going to let my daughter explain. This is the posting she put on Facebook.

I learned that "sx" is a medical abbreviation for "symptoms."

So let me say that I am still feeling great. I rode my bike 71 miles this week. I guess it's time to plan another vacation. Thanks, Dad.

Kathy

June 12th to July 6th - What's the Plan?

Let me first say that I am feeling great! Since I last posted, I've not had one bad day. Bill and I were able to get away for a few days and take our bikes down to the Virginia Creeper Trail, a 34-mile trail that starts at the top of Whitetop in the Appalachian Mountains. They shuttle your bikes to the top and let you ride down the mountain for 17 miles. On Day 2, they shuttled us to the town of Abingdon. In contrast to Day 1, we rode through beautiful pastoral lands. In the two days, we crossed 47 trestles (bridges) on this former railroad line. 

Yesterday, I was able to ride 23 miles on the Little Miami Bike Trail. I truly believe this trail doesn't get the credit due in other parts of the country. We have this unbelievable gem, right in our back yard. I feel fortunate to feel so good.

I was scheduled to have a followup PET/CT Scan July 2nd to monitor any changes. There were a few.

Despite two negative needle biopsies, these results are still concerning. The results of the PET/CT Scan were summarized as follows: 

We met with Dr. Guitron this morning, the surgeon who performed surgery in my chest wall last August. The good news is that there doesn't seem to be any evidence of the cancer spreading beyond the local region. Dr. Guitron recommended a surgical biopsy done with a pathologist in the room so that they can be certain to sample the chest wall mass. They will then be able to analyze the sample and see if there are any targeted therapies that could control these masses. Out-patient surgery is scheduled for July 19th. 

So the saga continues. I'm just going to continue to enjoy feeling great. Stay tuned.

May 9th to June 11th 2021 - Cancer (or Not)?

 

It has been a GREAT month. Bill and I are fresh from our trip to Utah and several national parks. I spent a week putting together a book documenting the trip. You can page through some beautiful images by clicking on this link.

Upon my return, I had a couple of followup appointments with two of my surgeons. One had his nurse call telling me to contact my cardiologist immediately, as he was "more concerned about my heart than my lungs." The visit to the cardiologist proved to be so beneficial as one test showed that I had fluid on my pulmonary arteries. This is what has caused my months-long battle with continued shortness of breath. A prescription for Lasix cleared me up in 24 hours. For the first time in nine months, I am now able to ride my bike again without difficulty.

Both surgeons said they were encouraged by my two negative biospsies, especially since the second one targeted the skeletal muscle. As one of the surgeons put it, "You are innocent until proven guilty." In other words, there is no PROOF of cancer at this point. I am scheduled for a followup PET scan on July 2nd. All agree that if I do have cancer, it should show up on the next scan. They also did a followup echocardiogram of my heart, and my ejection fraction has improved from 30% in January to 45% now. I'm heading in the right direction.

So how has this news affected me? Right now, I don't even feel like I have (or had) cancer. On National Cancer Survivors Day, my daughter congratulated me on being a survivor. My first reaction was one of surprise that I even had cancer. It's amazing how our bodies (and minds) can recover from nine months of struggling to feeling like the whole thing never happened.

Since there is nothing I can't do that I want to do, I'm taking advantage of every day. In a couple of weeks, Bill and I will travel to Virginia to ride the Virginia Creeper bike trail. From the town of Damascus, VA, you take a shuttle with your bikes to the top of Whitetop Mountain and leisurely travel down 17 miles through a national forest. I've been wanting to do this ever since we got our bikes and can't wait.

Final Thoughts

A couple of days ago, I saw a performance on America's Got Talent by "Nightbirde." She did a song she had composed describing her battle with cancer. She is from Zanesville, OH, 30 years old, and currently having a recurrence. A year ago she was advised to see a "Death Counselor" to prepare for her inevitable death. Talk about inspiration!!! This should be the theme song for all cancer survivors. Here is a link to her performance. Enjoy.

In addition to her music, Nightbirde inspired me with this quote: "You can't wait until life isn't hard anymore before you decide to be happy." I'm going to try to remember that one.

Wishing all of you a life-filled summer.

April 6th to May 8th 2021 - Good news!

What a crazy month. On April 6th I had a second biopsy on my suspicious chest mass. This time the doctor who performed it had a "cytotechnologist" examine each core as she removed it to guarantee that there were viable cells. The results showed "NO MALIGNANT CELLS DETECTED." What ???!!!

I should have been jumping up and down with joy. I do not in anyway doubt the biopsy results -- it's just that this mass is huge -- and obviously, the biopsy was limited to a small area, although the area that was most concerning.

I had a visit with my oncologist who did a great job of helping me understand my situation. He felt the mass was due to inflammation, but made it clear that he did not eliminate the possibility of recurrence. He then discussed what would be next steps in either instance. If there is cancer, he said that it would require another surgery. To quote his notes:

    ". . . the only way to be 100% certain would be to resect the entire inflammatory mass, which would be a major undertaking, particularly in a patient who has a history of pulmonary emboli, cardiomyopathy, and some ongoing heart issues with congestive heart failure. . . . it would not be guaranteed to be a curative intervention and the majority of patients recur anyway . . . In Ms. Reed's case, she does have several comorbidities which I think would highly complicate the chances of successful treatment even if this was a proven recurrence."

Maybe it takes hearing it more than once, but I got it. There will be no additional surgery on the basis of findings so far. Also there will be no additional interventions required. I can live my life without wondering if I should "do more."

My Dad used to say that when he talked to his sister, she was either "dying or going on vacation." I love that line -- and it seems to fit me lately.

The day after the second biopsy, Bill and I went on vacation to the southwest, concentrating on the five national parks located in Utah. What a trip it was! The scenery was breathtaking. I recently saw this Snoopy cartoon that sums up my current situation. 

I think I'll go try to ride my bike.

January 21st to April 5th 2021 -- Not the update I wanted

Since the episode of pulmonary emboli in December and heart failure in January, I've recovered to an acceptable level. I'm still a little short of breath but feel and look good. I'm on some new medications that really seem to address my symptoms.

Following my pulmonary emboli, the radiologist who read my CT scan, recommended close monitoring and a PET scan three months out. On March 22nd, I had the PET Scan. Results were placed in MyChart within a couple of hours. Googling some of the terms, it looked to me as if it was a cancer recurrence. 

My oncologist didn't want to confirm it until he sees the results of the biopsy (performed tomorrow morning), but all three surgeons agree the findings suggest recurrence. My doctors suggest there may be ways to supplement the hormonal drug I am on to slow progression, and they will perform molecular testing on the tumor to see if I am eligible for targeted therapy.

I had to have a mammogram today -- ironically, it was clear. I no longer have breast cancer.The cancer is located in my chest wall, and it is a large mass. 

This view shows the mass measuring 8.8 cm vertically (9.2 cm on the CT scan). The mass is outlined in red.

This view looks from the top down. 

I am scheduled for a core biopsy early tomorrow morning. It will take a few days to get results and a few weeks for the sample to be sent away and analyzed. My doctor does not think I'm a candidate for repeat surgery (and neither do I). She said that perhaps they will be able to find a gene that can be targeted. The most I can hope for is that the progression will slow down.

Wednesday morning, my husband and I will leave for a road trip out to Utah and several of the National Parks in that region. My doctor wholeheartedly agrees with us taking this trip while I am still feeling reasonably good. 

I know I've had a lot of support among my family and friends. Know that I am OK. As my husband, Bill, always says, "We'll figure it out."

April 5, 2021

What Else Could Go Wrong? - December 19th to January 20th, 2021

In my last post, I told you about my side trip into the world of pulmonary embolisms. I was diagnosed with bilateral PEs in both lobes. I was put on Xarelto and sent home.

It was a relatively calm couple of weeks before my "shortness of breath" symptoms returned. On Thursday night, January 14th, I returned to the E.R. This time, much to my surprise, I was diagnosed with "congestive heart failure." Following an echocardiogram, I was informed that my "ejection fraction" had gone from 55% in June to 30-35%. This means that my heart is currently unable to pump enough oxygen throughout my body. They do not know if this is a permanent situation for me. I will have a repeat echo in a few months.

I stayed for four nights at The Christ Hospital. They gave me an angiogram which showed that I had "basically normal" arteries. In addition, a CT Scan showed that my pulmonary embolisms of a few weeks ago have "cleared." This is great news. They sent me home on several new medications designed to keep fluids from around my heart. The doctor explained to me that they may never be able to give me a definitive cause for why this happened. I have several followup appointments, including one for genetic testing.

For my grandchildren, please note that I am writing this as I watch the inauguation of President Joe Biden and Vice-President Kamala Harris. What a historic day.

Here's hoping that my health issues will improve over the next few weeks.

A Curve Ball - November 17th to December 28th

 A lot has happened. Just when I really thought I was recovering, I started experiencing increasing incidences of shortness of breath. I had mentioned to several of my doctors. As this could have been a symptom of my recovery, I got lulled into complacency -- until my daughter came to town. I wrote a lengthy explanation of what happened to share with my family. For many of you, I am sure this is too much information. However, for those of you who are curious about pulmoary emboli, blood clots in the lungs, you may be interested in reading farther. I include this as part of the documentation of my breast cancer journey. Looking forward to 2021.

**********************************************************************************

Dear Family,

Let me provide you with an update. Feel free to read as little or as much as you want.

Background

You may have seen on Facebook that Liz, Roland and the kids met Bill and me at Summit Park in Blue Ash on Saturday, the 19^th. We hadn’t seen the grandchildren in six months, so we agreed to meet outside, wearing masks, so we could at least see each other. After the visit, I was walking to the car with Roland and he was surprised at how short-of-breath I was. Meanwhile, Bill was walking with Liz, and he told her how bad my breathing was at night and that I was gasping for air after simply going to the bathroom and that I stopped breathing at times. It was scaring him.

Liz and Roland compared notes on the way home. Liz knew that I was complaining of shortness of breath and had told all my doctors about this, but it was getting worse. I was under the impression that some shortness of breath was not surprising, given the extensive surgery I had on August 19^th.

On Monday, my shortness of breath was not improving. I was on Day 4. Liz, who I joke “thinks she is my doctor”, contacted two of her hematologist doctor friends who suggested to her I probably needed to go to the ER and needed to “take this seriously.” My oxygen levels were also getting lower and lower unless I was sitting in my chair.

Liz called me and insisted that I get in touch with my family physician. She gave me until 5:00 PM to come up with an “action plan.” At 2:00 pm, she called to find out what steps I had taken. I set up a video visit with my family physician. She said I needed to go to the ER because I needed to get a diagnosis quickly, including blood tests that would be quickly turned around in the ER. I got to the Christ ER about 5:00 pm.

I have a history of heart arrythmias, and when they hooked me up to the monitors, they were on full display. You can see the results of a 12-lead EKG they gave me once admitted to the hospital. And this was an improvement.

The ER doc was convinced I had pulmonary emboli and scheduled me for a CAT scan. I had to wait a couple of hours for the machine. Tom knows what it is to have a DVT where the fear is that a clot can move to the lungs. These can be fatal. What’s strange is I had no evidence of DVT.

The CAT Scan showed that I had “bilateral pulmonary emboli involving both upper and lower lobes.” In English, I had blood clots in both lungs and in both lobes. I also had some “postoperative fluid” that will require follow up by my oncologist. They don’t know what the fluid represents, but “residual/recurrent malignancy cannot be excluded.” I have an appointment with him January 5^th.

I don’t pretend to be a radiologist, but if I understand this correctly, the two images from the scan show clots identified with arrows. They told me that when they add the contrast dye, the clot starts where the white contrast ends.

Once they admitted me, they treated me with a heparin drip (blood thinner). The next day, they switched me to Xarelto, an over-the-counter blood thinner that they say I will have to be on the rest of my life. They anticipate that my body on this medication will be able to dissolve the clots and that within a couple of weeks I could see an improvement of about 60%.

When I came to the ER, they assigned me a PESI score that put me in a Stage IV, high risk category. This is largely based on my age, the fact that I have had cancer and meet several criteria for blood clots (Factor V Leiden, obesity, history of arrythmias, and relatively recent surgery). This could have resulted in a very bad outcome for me, because I am now stable and on blood thinners, my odds have vastly improved.

So there you have it – probably more than you ever wanted or needed to know. I obviously have some things that will require follow up. Should I learn anything significant, I will be sure to let you know.

Love,

Kath

I DID IT!!! - October 20th to November 16th

On October 6th, I began 30 rounds of radiation. The first 25 focussed on my entire breast and the last five focussed internally on my chest wall where the tumor was trying to extend into my lung. To say I was concerned about radiation was an understatement. Based on my sister's experience (Karen), I was worried about the effects of radiation on my skin. My doctor, Dr. McCluskey, tried to assure me that with the proper mix of lotions, I would be OK.

On the day of my last treatment, the technician offered to take a picture (with the blanket pulled up) so I could try to share with you the monstrously large equipment that is involved. 

Try to imagine that this whole machine rotates all around your body. The two appendages on the right and the left open out and x-ray your body before the radiation starts to insure that you are in the right position. What appears to be a black pillow is actually a mold that was created to conform to your body so that your head and arms will always align exactly.

The radiation itself only lasts for a few minutes and is computer-driven. After the first couple of times, you know exactly the pattern the machine will take. In my case, the machine rotated completely around my body to the right and then to the left. This was followed up by the table moving to a new position for one specialized "hit." Your oncologist spends about a week coming up with your individualized procedure and then the plan is checked by a physicist.

Once a week my treatment was followed up by a visit with the radiation oncologist who would check the condition of my skin, answer questions and make recommendations.

Yesterday was my last treatment. I am so happy to have made it through. Hopefully, my skin will heal completely in the next couple of weeks. It's traditional to ring a bell at the completion of this phase of your treatment. All of the technicians and nurses were absolutely wonderful.

Since I don't need to have chemo (my tumor is not likely to respond to chemo), I have completed most of my treatment. In December I go back to the oncologist who would like me to start taking an estrogen blocker. This medication concerns me greatly. It can have very nasty side effects. I agreed to at least fill the prescription and try it.

November was a very challenging month as we are eight months into the Covid pandemic, and I am largely quarantined. I also had a crack in one of my molars, accompanied by a bacterial infection, that resulted in me having to get a root canal. Also, we just went through a presidential election that proved that our country is very divided politically. 

It is a stressful time for everyone as we all have "Covid fatigue." Bill and I will not be able to celebrate Thanksgiving with our grandchildren, as we are in the "high-risk" category and can't risk exposure to the virus. The good news is that it looks like there will be an effective vaccine available in the new year. I would so like to take a trip and have the opportunity to live this life that has been given to me.

Finally, yesterday I received many cards from friends and family congratulating me on getting through radiation. They were such a surprise and really uplifted my spirits. I know my daughter, Liz, had something to do with making this happen. 

One of my favorites arrived from my niece, Tessa. Knowing how much I love riding my bike, she hand-painted a bike. I actually felt good enough a couple of weeks ago to ride for the first time in nearly three months. It's starting to get much cooler, but this image will remind me of better days in the spring. Thanks to all of you who have shared my journey and have encouraged me to hang in there. I wish the best to all of you.