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.

From Surgery Recovery to Radiation - September 22nd to October 19th

 

Today marks exactly two months since my major surgery to remove the mucinous carcinoma that had invaded my chest wall. Every day I feel better than the day before. Just as I began to feel like I had largely recovered from the effects of surgery, (fatigue, lack of motivation and shortness of breath), I had to face radiation. 

The first hurdle was getting my insurance company to agree to cover the 30 treatments suggested by my radiation oncologist, with 25 focussed on the breast and an additional five focussed on the chest wall. My radiation oncologist did everything she could to limit the possibility of radiation burn by prescribing lotions that are applied four times a day.

Today I go for my 10th treatment of 30. It's gone pretty smoothly so far. One side effect I did not anticipate was some degree of nausea. However, I'm optimistic about getting through radiation with minimal negative effects.

So what has helped? In addition to the support of my husband, who understands my need for additional sleep, I've received a lot of comfort from our rescue dog, Adie. 

We rescued Adie four years ago. I call her the "Toothless Wonder." She had been in a puppy mill where her only function was to give birth to multiple litters of puppies.

Bill thinks she seems to understand that something happened to me, and she will happily lay alongside my leg in my recliner as long as I want to be there. 

I think of her as my "Cancer Comfort Care Companion." I find it to be quite soothing to have her near me and truly wanting to be so close.

So here is to Adie, who along with my human companions, has helped me realize that I will recover. It's so important to have that support.

Recovery Mode - August 19th - September 21st, 2020

I have to admit that I thought I would be "fully recovered" now, 33 days post-surgery. Pain is not the issue. My biggest problem has been shortness of breath. This means that on most mornings, I wake up and feel very weak, until I'm able to eat breakfast including O.J. and a banana. I have low postassium levels.

Last week I ended up visiting the E.R. I was gasping for air for several hours. I was diagnosed with minor dehydration and low potassium levels. A bag of IV fluids and some potassium pills fixed me right up.

For the first time today, I actually woke up without breathing issues. It's amazing what being able to breathe can do for you. Not only did I feel good, but I suddenly started setting up appointments for the vet, tile and grout cleaning, etc. In addition, I am writing this. This makes me feel so optimistic that perhaps I've turned the corner.

Last Friday, I had an appointment with my radiation oncologist. I was disappointed to hear that she wanted me to have 30 radiation treatments vs. the 20 she had anticipated pre-surgery. When I asked why the change, she said that due to the extensive involvement of my chest wall, she felt more comfortable with extending the radiation. In addition, the last 10 will be more focused on the chest wall than the overall breast.

During that appointment, they made a mold of how they want me to be positioned on the table and used permanent marker to help them position me correctly. They will send the mold to a satellite office close to my home where I will have the actual treatments -- probably starting next Monday. So now I am pretreating the area with lotions and salves in an effort to spare any burning during treatment.

Just when you are starting to feel good, you have to prepare yourself for the next episode. At least I have the benefit of believing that I will be cancer free after this. Prayers for my friends who are also battling this disease under much less optimistic circumstances. 

Post-Surgery Report - September 5th, 2020

 "I want you to look around the room. You've got the A-Team."

These were the words spoken to me by my breast cancer surgeon as she held my hand just before they put me under for what was going to be a very big surgery.

Seven weeks earlier, I had a lumpectomy for my mucinous breast cancer. During the surgery, they were unable to get clear margins, leading to more tests and evaluations. A review of the MRI indicated that the cancer had "invaded" the chest wall muscle and possibly the ends of two ribs, the clavicle and the sternum. My breast cancer surgeon recruited a plastic surgeon and a thoracic surgeon to participate in the surgery. 

The surgery was scheduled for Wednesday, August 19th. I knew this was going to be a "big" surgery and I also knew that some aspects of it would not be known until they were literally "in there." I just wanted it to be over with.

The surgery was carried out in three phases. My breast cancer surgeon reopened the chest wall and removed a portion of the chest wall measuring 9.5 x 7.2 x 3.3 cm. The chest wall resection included a ill-defined tumor that was situated between the ribs and sternum (2.6 x 1.8 x 1.8 cm).

Following the removal of the chest wall resection, the thoracic surgeon removed the head of the clavicle, ends of the 1st and 2nd ribs, and a 2.6 cm part of the sternum. The lung was not involved and there was no bone invasion identified.

Finally, the plastic surgeon created a chest muscle flap to cover the defect created by the surgery. This reconstruction is difficult for me to try to comprehend, but the result is amazing.

I spent nine days in the hospital. This was longer than initially anticipated. This was due to the fact that I would have one complication (i.e. water on my lung) that would be fixed only to result in another complication (i.e. drop in potassium levels). It took a few days to get everything in sync. 

My doctors were all from The Christ Hospital. As this hospital is well-known as a "heart hospital", I was placed in the CardioVascular Step-Down Unit post-surgery. I received excellent care from a very talented and conscientious staff. 

The post-surgery pathology report stated that "the anterior soft tissue margin of resection is free of tumor" AKA they got it all. I have a few weeks to recover and then will have to have radiation as a hedge against any microscopic cells that may be present. I am grateful that it appears as if I have a decent chance of beating this breast cancer. 

Before I end this post, I want to thank the main members of the A-Team that made this all come together for me. In addition, there were at least 15 additional doctors, physician assistants, nurses, personal care assistants, therapists, meal preparers and deliverers and those tasked with keeping the room clean at this time of COVID. And those are just the people I saw -- I can't imagine the number of people behind the scenes. I'm grateful to them all.

I am so grateful to each of them.

Cancer Update - August 17, 2020

 

So here is the presurgical update on my cancer journey. Since my last surgery on June 30^th, it’s been a bit of a challenge. As discussed in an earlier post, they discovered that they did not get all the breast cancer. In fact, the radiologist had read the MRI incorrectly. The underlying chest wall muscle was affected as well as the sternum and possibly the ends of one or two ribs. This meant a series of meetings with additional surgeons, including a plastic surgeon and a thoracic surgeon. They also sent me to an oncologist.

I had a CT of the chest and the abdominal area. GOOD NEWS!  No additional cancer was discovered. I went to the Emergency Room last Saturday night with excruciating pain in my jaw. An abscess was ruled out, but they still suspected a possible dental issue. After following up with my dentist, trigeminal neuralgia was suspected. I had never heard of this condition, but it is caused by pressure on the trigeminal nerve that carries pain sensations from several parts of your head to the brain. Since I was already scheduled for a maxillofacial CT scan and a full bone scan the next day, he felt it best to see what those tests indicated.

Surprisingly, the CT scan showed that I had sinus disease with the most severe disease in the left maxillary sinus. There was also obstruction of the left ostiomeatal complex and mucosal thickening in both the left and right ostiomeatal complexes. In English, it sounds as if I had a bad sinus infection. I’m now on a course of antibiotics for this with a possible referral to an ENT post-surgery.

So having completed all of that, surgery is scheduled on Wednesday at Christ. I will have three surgeons: my breast cancer surgeon, a plastic surgeon, and a thoracic surgeon. I will be admitted into a cardiac step-down unit for one or two days. The thoracic surgeon will oversee my care because most of what needs to be done will be done by him. The plastic surgeon is responsible for any reconstruction that may be necessary. 

They still think my cancer is localized and there is no sign of metastasis to other areas. I will need radiation at some point, but there will be no need for chemotherapy as my specific cancer does not respond to chemotherapy.

So, as you can imagine, I just want this to be over with. Thank you for praying for me. As you know, due to Covid, I will not be able to have visitors during this time. We’ll talk on the other side.

Returning to Cleveland - The Encore - August 15, 2020

When we were compiling the blog posts to create this book, we had this feeling of unfinished business. For one thing, although Bill had done the ceremonial "wheel dip" in Lake Erie, we hadn't taken a picture of it. We had forgotten that Edgewater Park was also the home of the famous "Cleveland" sign that is a great foreground for Lake Erie and the city in the background. In addition, that was the first day out and we found the trail nearly impossible to navigate through the city of Cleveland.

So on a whim, we decided to return to Cleveland, ride from the trail head for the Towpath Trail and head north to the lake and see if we had better luck. The day was beautiful for August and not only would I be able to ride with Bill, but we would be able to take our dog, Adie. We knew it would be a long day, but we felt it would be worth it -- and it was.

Edgewater Park

Heading north, it was easy to follow the trail -- at least at first. A few miles up the path, it abruptly ended. This area of Cleveland is undergoing gentrification. Upscale condos were being constructed along the path which, when completed, should enable residents to make an easy commute into the city. Luckily for us, we met two locals who were riding to Lake Erie and they offered to let us travel with them. Little did we know that we would be riding through the city streets of downtown Cleveland, starting at the Rock and Roll Hall of Fame and passing two stadiums. 

We rode for about three miles on Detroit Ave. which was very bike-friendly with separate bike lanes in most places. We crossed a long bridge which had a separated path for bikes, making it feel very safe. In another 20 blocks, we turned right on 65th Street where eventually we hooked up with the path that ended write at Edgewater Park.

This time, we did not forget to take the picture of the bike at the lake's edge. Unlike the previous time we visited, the beach was crowded with swimmers who were doing everything they could to be socially-distanced during this pandemic. There were beautiful trails connecting one side of the beach to the other where the Cleveland sign was located. 

Since we were making this trip in one day, including the bike ride, it was time to try to find our way back to the trail head. Without our local guides, this was very difficult to do. I remember one case where I could stand at the end of the trail and look over where the road was torn up to the next section. You just couldn't get there.

Again, with help from some of the locals, we made it back. We had Adie with us for the whole 26-mile round trip, and I honestly think she enjoyed the whole thing. I'll let you be the judge.

Our toothless wonder, Adie, in her bike basket.

Round-trip from our house to Edgewater Park is 237 miles. By now it was time to reward ourselves with a milk shake and head home. We made it home by 11:00 pm having traveled nearly 500 miles by car and another 25 by bike -- 14 hours in all. But it was well worth it. Mission accomplished.

An Unexpected Ending - Thanks to the Cincinnati Police

When Don Buccheit and I arrived at the Public Landing for the obligatory "wheel dip" in the Ohio River, you were required to pay $5.00 to park your car on the landing. There was a police officer parked next to the entrance. I pulled up right behind him and asked if he would mind if we left the car there for five minutes while we took pictures. He told me that he would let me park in his spot while he parked on the opposite side of the street while we took pictures.

With our task completed, I introduced Bill to Sgt. D. Anderson. We shared the story of Bill's adventure and told him that we were heading over to Christian Moerlein for a beer and a toast. He told Bill that he had something he wanted to give him and to wait for him on the plaza outside of the restaurant.

Imagine our surprise when Officer Anderson showed up with two other police officers, including one who is in the bike patrol. (I wish I had written down their names).

They presented Bill with an official Cincinnati Police Department patch as well as two other items.  The key chain is for the "Pan Ohio Hope Ride," a four-day ride from Cleveland to Cincinnati sponsored by the American Cancer Society.  In addition, they gave him a medal. It is edged with a bike chain surrounding the "Cincinnati Police Department" which it says has been "Pedaling Since 1894." Who knew? The back of the medal is truly a work of art with the Cincinnati skyline in the background.

It must have felt similar to receiving a medal after running a marathon. And the best part was that these three officers were the icing on the cake for Bill's accomplishment.

As promised, we had a celebratory beer and lunch with our friend Don Buchheit. What a wonderful day!

The Erie to Ohio Trail - Lunken to the Ohio River - August 12, 2020

 

On this, the final day of our Erie to Ohio adventure, Bill returned to Lunken Airport where the trail links to the Ohio River Trail. As you can see from the map, not all of the trail is off-road. However, the city has added a bike lane from Kellogg Ave. along Riverside Dr. to downtown Cincinnati. 

We have ridden this road many times. The bike lane has really made this a safe route. It is special to me because it travels along the childhood home of my father and grandparents at 2424 Riverside Dr. It used to be Eastern Ave., but gentrification has led to renaming the road to one perceived to be more "upscale." Across the street from my Dad's home are million-dollar condominiums built on the site of what once had been my Dad's elementary school. You can't ride this stretch of road without feeling the presence of my Jones ancestors. You can read a lot more about my Dad's home by using this link to my blog about our Ohio River roots.

This last leg was a short seven miles. Our neighbor and good friend, Don Buchheit, accompanied us to the Public Landing for the obligatory wheel dip in the Ohio River.

Due to a couple of detours, Bill had ridden 352 miles over 9 days that began with a trip to Cleveland on July 20th. Mark one more item off of the Bucket List.

I do have one more incredible story to tell. That will be the subject of the next post. For now, it was off to Christian Moerlein for a celebratory toast.