Thursday, June 2, 2022

April 12th to June 2nd - Catching Up

 


          "Do what you can with what you have where you are."                                                                  Theodore Roosevelt

I've written this post in my mind at least three times. I considered writing a tribute to my husband, who has so lovingly and patiently helped me deal with my ups and downs. I thought I might discuss my health, but there really isn't much to say. I'm scheduled for a bone scan and a CT scan in the next two weeks and may have something to add then. In keeping with my theme of "dying or going on vacation", I could discuss our accomplishments and future plans. I think I'll go with option #3.

At my April oncology appointment, I asked my doctor how long she thought I could safely plan a trip -- in other words, feeling well enough to do the basics. I was surprised at her answer. She said if I didn't hold her to it, she thought I'd have six months. She then added the caveat that one of the variables is "what I'm willing to do do treat it." She knows that I've repeatedly emphasized that I value quality of life over quantity of life. As good as I've felt, however, I expected her to think I could safely plan a trip in the next year. 

I'm at the stage where you have to schedule everything around doctor appointments and tests. We already knew we were going to take a bike trip on May 19th to ride about 70 miles of the Great Allegheny Passage (GAP Trail) from Ohiopyle, PA to Cumberland, MD. 

Reality

We drove to Ohiopyle, PA which has a great state park famous for white water rafting in the rapids of the Youghiogheny (Yug) River. The GAP Trail is 124 miles from Pittsburgh to Cumberland, MD. Here the path connects to the C&O Canal Trail enabling the ambitious rider to ride from Pittsburgh to Washington, D.C. Bill and I both find it difficult to walk any distance, but we didn't anticipate some of these difficulties:

  • At our first BnB, we were required to climb a rock stairway of about 20 steps with a rise of about 10 inches for each step -- almost impossible for us.
  • The second night, we stayed on the second floor of a BnB with a very low toilet and no grab bars. I struggled to get off the toilet.
  • On our first day out, we rode 33 miles with over two hours in a severe thunderstorm. This made the path muddy and more difficult to navigate. The entire path had a small uphill grade of 1% to 2% as we were traveling up to the Eastern Continental Divide. On any other day, I think I could have done it, but we were both so exhausted that we didn't have the strength to go to dinner. We settled for instant oatmeal cereal at the BnB.
  • I was aware of the "cancer" in my chest and had pain in my underarm where the lymph nodes had been removed.
  • All of the above made me aware that my future could include physical challenges I am not yet ready to accept.  

 So How Was the Trip?

I knew once we'd been home for a week, all of the memories would be good. On the first day, we rode through a major thunderstorm. My phone signalled a tornado watch, but when we arrived in the next town, the sirens were a call to the volunteer fire department to clear downed trees and power lines. It was not fun. However, we met several cyclists at a local lunch stop. Two were riding from D.C. to the state of Oregon. I was impressed.


Day 2 was beautiful. We traveled up to the Eastern Continental Divide. From there we had a beautiful view. However, as soon as we went through the tunnel, I came in too "hot" and managed to fall. I insisted that Bill take a picture of me looking like a beached whale. From this point on, the trail gradually descended. We stopped in a town called Frostburg for the night.


I managed to short out my bike battery by touching the key to the "wrong side." This forced us to shuttle the last 16 miles to Cumberland, MD where we played tourist and rode a diesel train through the exact section we would have ridden on our bikes. It was very relaxing.

We stayed at the Fairfield Inn in Cumberland which is on the bike trail and caters to bikers. It was wonderful. It was so unusual to have breakfast with an ever-changing cast of bikers with their bikes. Most were picking up the trail and riding on to D.C. We caught a shutte with our bikes back to Ohiopyle, picked up our car and decided to head home a day early. Rain was forecast for the rest of the day.

Bottom Line

The trip was a success. We "upped our game" by taking all of our clothing, etc. on our bike and traveling straight through. I think my days of traveling 33 miles in one day are over, but 15 miles would be very doable. Every time I mention problems we may encounter to my husband, his standard answer is "we'll figure it out." And "figure it out" we did. So what's next?

We listened to my oncologist's advice and planned a trip we thought we could handle. On June 23rd, we are flying to Seattle for a couple of days, then traveling to Vancouver, CA and taking a trip on the "Rocky Mountaineer." This train only travels during daylight to Kamloops, Lake Louise and Banff. From there we will be bussed to Calgary. We will fly home from there via Toronto. It's all planned with comfy hotels and luxury train travel. We can't wait. We got our second COVID booster in hopes that COVID won't prevent us from going.

I'll let you know how the scans go. Meanwhile, we're going to do "what we can with what we have." Blessings to all reading this.

Kathy 

Monday, April 11, 2022

February 21st to April 11th - What's Next?


 What's Next?

This seems to be the question I ask myself every day -- several times a day. Should I plan a trip? What will I be able to do? When will this cancer begin to take its toll? Why do I keep putting on weight? Will these Cincinnati gray and rainy days ever end?

My Health Update -- or at least as I understand it.

In late February, I had CT scans of my chest, abdomen and pelvis. This was followed up by a whole body bone scan in mid-March. A visit to my oncologist was pretty encouraging. The CT scan was "stable." When the area of concern in the bone scan was compared to the same area on the CT, my oncolgist said that she "would not specifically call this progression." I've included a picture of the bone scan.



The part in the red box seems to show cancer in the area of my collar bone (clavicle) and sternum, the same area where I had surgery August 19th, 2020. My oncologist did not suggest that I change anything in my treatment plan, which includes a monthly injection of fulvestrant to control estrogen production in my body. My tumor, like Mom's, is ER+ or "feeds" on estrogen.

I continue to feel great. I told her I like to "pretend" that I don't have cancer. She told me, that in her professional opinion, I do. This is what she put in my notes:


The last couple of days, I feel like there has been a "lot" of activity in my chest. I have no idea if this is indicative of anything, but I won't have long to wait. My next appointment is in 11 days. Apparently, I'll have scans every three months. 

My mood always improves as the weather warms up and there is more sun in the sky. I also celebrated my 73rd birthday on April Fool's Day, a date I wasn't sure I'd make a year ago. So I guess all I have to do is see "what's next." Thanks for reading along with me.

Kath



Sunday, February 20, 2022

January 3rd - February 20th - What helps me cope?


The Health Summary

During the past seven weeks, I've generally felt great. My breathing is a little better, and other than back pain following my fulvestrant injection, I've been able to do anything I've wanted. A small lump has appeared in the area where I've had multiple biopsies. I've got an appointment tomorrow to see if I need to be concerned.

Coping

I'm often ask how I cope with this. The short answer is that sometimes I cope better than others. These are some of the things I know work for me:

  • minimizing stress
  • getting enough sleep 
  • riding my bike
  • a clean house (this is one I struggle with)
  • a fire in the fireplace
  • blue skies
  • online friends and family
  • writing
  • our coffee group
  • acceptance of my situation
  • and, of course, vacation!!!
Last week, we had the pleasure of visiting my sister, Karen, in Mt. Dora, Florida. Following her retirement, she relocated from Miami to Mt. Dora and had been asking us to visit her in her new home. We loaded up the car, bikes and dog and headed 900 miles south on the heels of a bad ice storm/snow combination here in Cincinnati.

We stayed for eight nights. The Super Bowl fell in the middle of our visit. My brother, Tom, and sister-in-law, Linda, came to Karen's so we could cheer for the Bengals in their first appearance in the Super Bowl in 31 years. Although we didn't win, it was a great game.

Mt. Dora is a beautiful small town in central Florida in Lake County. Nearby Lake Dora is part of a chain of seven lakes that eventually connect to the Atlantic Ocean. When Karen asked what we would like to do, I told her that anything with bikes or boats would be top of my list.

We researched bike trails in the area and rode on five separate days. On our last day, we rode the Wildlife Wilderness Trail that is closed to cars weekdays. We came face to face with numerous alligators and a wide diversity of birds that had migrated to the area for the winter. We also took a ride in a float plane for an overview of the Harris chain of lakes. All of us had difficulty getting our old, arthritic bodies into the plane.

Karen showed us some of the local sites, including a trip to Blue Springs State Park to see the manatees. We tried to see a rocket launch (a small rocket that failed at stage separation). We drove to New Smyrna Beach where Mom and Dick used to stay each November and up to Daytona. Bill and I took a side trip to Clearwater to take his daughter, Julie, and her friend to lunch. 

Karen loves to capture sunsets over Lake Dora, so we scheduled a sunset cruise on a pontoon boat the one night that was cloudy. Twice we had dinner at a restaurant called "Pisces Rising" on the lake's shore. On those nights, the sunsets and the food did not disappoint.

I put together a few collages to give you a taste of our wonderful week. Karen is already trying to schedule a visit for next year, since she is convinced I'll "still be around." I hope she is right.




Sunday, January 2, 2022

October 25th to January 2, 2022 - A New Year and New Optimism

 


Happy 2022! I can't believe I haven't posted for more than two months. There were many times I considered posting, but it was always delayed because there was a new test or new medication around the corner and things seemed to always be in flux.

Since my last post, I have had 19 separate doctor appointments. On October 25th, I had a "Guardant" blood test. The results proved that I have circulating cancer cells within my blood stream, although the originating location was not identified. Coupling this result with the fact that the last biopsy found "mucin" in one of the samples (I have mucinous carcinoma), my oncologist recommended that I start monthly fulvestrant injections along with Verzenio, an oral medication for metastatic breast cancer taken twice a day. 

In addition to three appointments with my oncologist, I had three counseling sessions, three sessions for IV fluids for dehydration, one appointment with my family physician, one with my radiologist (on the one-year anniversary of completing radiation), two with a critical care nurse, a CAT scan, Echocardiogram, and numerous blood draws. I also had my routine visits with my opthamologist and dentist. 

After six weeks on Verzenio, I pulled the plug. I was constantly dehydrated, fatigued and suffering from diarrhea. Blood tests showed that several of my levels were either too high or too low. My immune system was being compromised and my kidney function was taking a turn for the worse. Since stopping the Verzenio three weeks ago, my blood levels have improved. I've been able to ride my bike again and feel much better. I guess that is why I am finally able to write this post.

We just got through the Christmas season and New Year's Day. We had a wonderful dinner at the Kenwood Country Club on Christmas Eve thanks to my brother Don and his wife Frani. We had plans to join my daughter and family on Christmas Day, but that got cancelled. Both she and one of my granddsons had "bad colds." As it ended up, my daughter tested positive for Covid on the 29th.

This made it impossible for us to join in the celebation of Andrew's 10th birthday. I drove to Columbus to drop off his birthday present.



Nathan, Roland, Ian and Andrew


 

Unfortunately, Liz was in isolation and could only wave to me from her bedroom window.




 










The year 2022 is already looking good. Bill and I celebrated our 35th Wedding Anniversary on New Year's Day -- something neither of us thought we would ever see. Because of the new Omicron variant of Covid, we were unwilling to go out, so we ordered a great dinner for pickup from one of our favorite restaurants -- Cooper's Hawk. Of course, we ordered salmon.

After stopping the medication, I was able to put 54 miles on my bike on December days when it got warm enough to ride. I am looking forward to many more miles depending on the weather.

Once again, I feel blessed. It's a new year with new opportunities. I hope to take advantage of them. Wishing all of my relatives and friends all the best as the days begin to get longer.

Kath

Sunday, October 24, 2021

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 1st. 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


Tuesday, September 28, 2021

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


Saturday, August 14, 2021

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

Tuesday, July 6, 2021

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.

Friday, June 11, 2021

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.


Saturday, May 8, 2021

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.