Ohio to Erie Trail - Boston Mills to Massillon, OH - July 30th

This has always been one of my favorite quotes. It seems so appropriate now. Last Monday, Tuesday and Wednesday were spent with medical appointments. Looking at my calendar, I knew we were going to have a few days free, so Bill and I decided at the last minute to head north with our bicycles. Our plan was to take off from where we ended 11 days earlier. Riding the Ohio to Erie Trail, that transverses the state of Ohio from Cincinnati to Cleveland, has long been on Bill's bucket list. 

I've found on my breast cancer journey that there are two things that help me cope: 1) writing this blog, and 2) taking small trips that do not put me at risk of exposure to Covid 19. We headed up to Columbus to my daughter's house. (They were away on vacation, so no chance of exposure there). The next morning, we drove to Boston Mills in the Cuyahoga Valley National Park. Here we were able to start again. Bill rides the entire distance and I meet him with the car at the predetermined endpoint. As you can see, every precaution is taken.

I rode the first 12 miles with Bill and then returned to the car. The scenery was incredible.

Cuyahoga Valley National Park

I don't think I spent one minute thinking about cancer or surgery. The skies were a bit overcast with the high reaching about 80 degrees -- a perfect day for a bike ride.

                                                            

 

This Week in Cancer - July 26th to August 1st

This week began with the knowledge that I was going to need a second surgery. During the first surgery, a lumpectomy, it was discovered that the mucinous carcinoma had invaded the chest muscle. Further tests found that the invasion extended to my sternum and or rib. Not only were further tests going to be needed, but the second surgery would require three surgeons: my breast cancer surgeon, a plastic surgeon and a thoracic surgeon.

A CT scan was ordered for Monday. I visited the thoracic surgeon on Tuesday for the first time, and he let me photograph one of the scan views. In the image below, the part that is within the rectangle is the part of the cancer that has invaded the area near my sternum and rib. The good news is that they still think this cancer is localized and has not spread to other parts of my body. Until they literally are doing the surgery, they will not be able to determine if the cancer is just wrapped around my sternum and rib, with the possibility of just being scraped away, or if it has invaded the sternum and/or ribs.

On Wednesday, I visited the oncologist who has been assigned to me. He already had been given a "heads-up" that I was not a fan of chemotherapy or endocrine therapy. So here is how the conversation went:

Me: I value quality of life over quantity of life.

Him: You want to know what poor quality of life is? Bone cancer. Both chemotherapy and endocrine therapies can have bad side effects, but medicines can be changed and symptoms controlled. In no way do those issues compare with bone cancer.

He told me they were waiting for the results of an "oncotype" test. This test will tell them what the odds are of my individual cancer returning within a certain timeframe. It would also tell my doctors whether my cancer would be responsive to chemotherapy or endocrine therapy.

I told my daughter that I feel like I'm a fish who has been hooked and is now being reeled in slowly. I started this process with one set of assumptions that are constantly being challenged. Their arguments do make sense.

The thoracic surgeon mentioned the possibility of either a PET scan or bone scan to verify that, in fact, my cancer is localized. He also said a PET scan would give him additional information about the chest wall muscle before surgery.

So what to do as the final pieces fall into place -- my Dad always said that when he spoke with his sister that she was either dying or going on vacation. Taking a page from my aunt's playbook, Bill and I left from the oncology appointment and traveled north for a few days of biking the Ohio to Erie Canal. I'll discuss that in the next post. Thanks for sharing this ride with me.

Back to Reality - July 25, 2020

Note: This post discusses the latest developments re: my breast cancer diagnosis. I'm writing it for my family and because I personally find it therapeutic to write about my journey. You may choose to skip this post if it has the potential to make you uncomfortable. You've been warned.

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A Short Recap

I went to see a plastic surgeon. After the last surgery, my cancer surgeon knew that this next surgery would involve a much deeper incision requiring reconstructive surgery. When I went to see the plastic surgeon, she was looking through some of the MRI images on her computer and became concerned. You could tell that she wasn’t convinced that the radiologist had read the MRI correctly. If you recall, they were surprised when they did the surgery that there was cancer in the underlying chest wall. The radiologist had determined that "Enhancement posterior to this mass, anterior to the right pectoralis musculature corresponds with a vascular structure without invasion of the right pectoralis musculature identified."

In layman's terms, this means that the radiologist felt the MRI showed a vascular structure (blood vessel) and that there had been no invasion of the chest muscle by the mucinous carcinoma. During the original surgery, it was discovered that there was extensive invasion of the skeletal muscle.

At this point, the plastic surgeon suggested that we request a second review of the MRI results by radiology. Following that review, I got a phone call from my cancer surgeon who said that, in addition to the invasion of the chest wall muscle with the carcinoma, there may also have been an invasion of the underlying rib and/or sternum. She was going to refer me to a thoracic surgeon. I will meet with him on July 28th.

Friday’s Update

My surgeon called me Friday and said that my case had been discussed in their multidisciplinary team  meeting. The following recommendations came from this meeting:

      1) They are going to have my tumor “oncotyped.” This test is designed to predict recurrence and whether chemotherapy would be a beneficial treatment.

      2) They suggested I have a CT scan to get a better look at the vessels within the breast. This has been scheduled for Monday.

3    3)  She knew I had an appointment with the thoracic surgeon on Tuesday and said she will be very interested in what he has to say. I then asked if after their meeting that they suspected that the mucinous carcinoma had “invaded” my sternum and a rib. She said it was all part of the original carcinoma when I asked her about the possibility of metastasis.

      4) The team suggested that I see a medical oncologist. I’ve already got that appointment set up for Wednesday.

So her final comment was that after they get all the information, the three surgeons will meet and come up with a surgical plan. She is still hoping to have the surgery scheduled by mid-August. It should be an interesting week.

The Getaway that Wasn't

So Bill and I decided to leave town for a few days so I wouldn't "obsess" over my current cancer diagnosis. We decided to give Bill the opportunity to ride the Ohio to Erie Trail starting in Cleveland and heading south. We had purchased books and maps but had very little time to organize this trip. I was mainly going to play a supportive role, picking Bill up at the end of each days ride and perhaps riding up from the endpoint to meet him. 

As you can see from the map on the left, the route to the Tow Path Trail Head is a combination of paved paths, on-road connections and intermittently marked bike trails. If you look at the second map (what Bill actually rode), you can see at the mile 5 flag that he missed the turn, rode south, and the backtracked to an eastern connection. This path took him far east of where he needed to go, all the way over to the Cleveland Clinic and Case Western. After racking up about 20 miles, he called me and I came and picked him up. We drove to the Trail Head on Harvard to begin again.

# 1 and # 2  Starting out from Edgewater Park on Lake Erie after the traditional "tire dip" in Lake Erie.

# 4  View of downtown Cleveland from Edgewater Park.

# 3  Actual path Bill took from Edgewater Park to East Cleveland.

# 5  Actual path Bill traveled south from Trail Head.

# 6 Tow Path Trail Head with map on Harvard Ave.

By the end of the day, Bill had ridden more than 44 miles to Boston Mills in the Cuyahoga Valley National Park. I met him there and we traveled to the B&B I had booked in Akron for the night. We tried to find a place for dinner where we were comfortable with their social distancing policies and ended up eating at Chiplotle's because of their outdoor patio. We followed this up with a butterscotch sundae at an ice cream shop that had made every effort to keep customers protected. We went back to the B&B and settled in for the night. Tomorrow would be another day.

Update: The next morning it was raining and the temperature was forecast to get up to 90. Wednesday was going to be much the same. We decided to return to Cincinnati and continue our adventure at a later date.

 

How My Husband and I Differ on Car Repairs

Bill and I looked at our calendars and realized that we actually had a week with no doctor's appointments scheduled. We both felt it would be a good time for us to get away for a couple of days to keep me from constantly checking for journal articles related to my cancer diagnosis.

Unfortunately, there were additional issues in planning this particular getaway. Covid 19 cases were escalating in Ohio and many surrounding states. Given our health factors, we had to plan a getaway that would allow us to protect ourselves from contracting the virus.

After careful consideration, we decided to take our Rad electric bikes to Cleveland and ride the Ohio to Erie Trail toward Cincinnati. I should probably clarify that Bill would be riding the trail and I would be providing car support, picking him up at the end of each day. Bill has wanted to do this for quite awhile, and we felt we could do it safely.

We would leave on Sunday and spend the night with grandchildren in Columbus. We have not been able to be in their house since March. The next morning we would go to Cleveland and do the traditional "tire dip" in Lake Erie at Edgewater Park. He would wear a mask and the trail would not be very crowded on a weekday.

But first we had to get there. It wasn't long before my passenger husband had time to figure out that I had neglected minor repairs on my car. The first clue was when water started dripping on his leg and filling the well on his side of the car. He asked me how long I knew about this, and I sheepily had to say that I had known about it since June 2019 -- only 13 months ago. Then he noticed that his phone wouldn't charge. I finally made a list of our different approach to what I considered to be minor nuisances.

So I guess I've learned my lesson (hopefully). In the next post, I'll tell you about our getaway -- not exactly how we envisioned it.

Update - July 23, 2020

As I mentioned in the previous post, the next step was to visit with a plastic surgeon because it was felt that the "next" surgery would require some reconstruction. I visited with her with my daughter on facetime. The plastic surgeon began to review some of my MRI images. She came upon the one that clearly showed the cancer from the breast tumor had invaded the chest wall. The radiologist had determined that "Enhancement posterior to this mass, anterior to the right pectoralis musculature corresponds with a vascular structure without invasion of the right pectoralis musculature identified."

In layman's terms, this means that he felt the MRI showed a vascular stucture (blood vessel) and that there had been no invasion of the chest muscle by the mucinous carcinoma. During the original surgery, the skeletal muscle has extensive invasion of the skeletal muscle, as stated in the previous blog post.

She suggested that we request a second review of the MRI results by radiology. Following that review, I got a phone call from my cancer surgeon who said that, in addition to the invasion of the chest wall muscle with the carcinoma, there may also have been an invasion of the underlying rib and/or sternum. They referred me to a thoracic surgeon. I will meet with him on July 28th.

So I am told that all three surgeons will participate in the actual surgery. I was also told, just like the last time, they really won't know how extensive the surgery will be until they actually get into the breast and determine the extent of the invasion. It all sounds a bit elaborate to me.

In light of the above, my husband and I decided to get away for a few days before the doctor appointments started up again. I'll discuss that in my next post.

Update - July 14, 2020

Two weeks ago, I had a lumpectomy on my right breast with the hope (expectation?) that they would be able to remove my 2.5 cm mucinous carcinoma. We had every reason to hope that my surgeon would be able to get clear “margins.” The next step would be 16 rounds of radiation and I would be on my way. It didn’t work out that way. The lump was removed uneventfully, and I recovered quickly. Here is a picture of me the next day after the surgery. I felt great.

Liz, Kathy, Bill and Adie

On Tuesday, the surgeon called me with the results and let me know that they were not able to get “it” all. Apparently, the tumor “invaded” the chest muscle and they would need to do additional surgery. Because of a conflict, my post-op appt. had to be delayed. She allowed me to come and pick up my full pathology reports, and her staff set up an appointment with a plastic surgeon at Christ Hospital. 

Liz and I obsessively researched everything we could over the weekend. She passed the path reports on to a few of her doctor friends in Columbus. It was beginning to sound a little scary.

When I went to see the plastic surgeon, she brought up computer images from the MRI I had on May 21^st. She got a little concerned with one of the images, let me photograph it, and then gave me her opinion. First, because of the discrepancy between the MRI synopsis and the post-surgery pathology reports, she is going to ask the radiologists for a second review. Depending on their opinion, they may want to involve a thoracic surgeon. All of this is preliminary.

So I’m going to spare you the images – under the category of “too much information.” This is the current status. There are steps to go through before I can report back.

MRI Results (May 21st) Predicted	Pathology Report (June 30th) Actu
Enhancement posterior to this mass, anterior to the right pectoralis musculature corresponds with a vascular structure without invasion of the right pectoralis musculature identified.	Excision #1 – Mucinous carcinoma -The posterior-superior margin is positive where the tumor invades the skeletal muscle.
	Excision #2 – New superior posterior margin: Skeletal muscle extensively involved by mucinous carcinoma reaching the inked margin.
	Excision #3 - New lateral posterior margin: Benign skeletal muscle, uninvolved by carcinoma.
	Excision #4 – New medial posterior margin: Skeletal muscle extensively involved by mucinous carcinoma reaching the margin.

Summary:

Skeletal Muscle: Carcinoma invades skeletal muscle.

Invasive Carcinoma Margins: Positive for invasive carcinoma.

Positive Margins: Posterior (posterosuperior)

The next step will be to wait for my surgeon to give me a call with "the plan." I don't think I'm going to like it.

June 2020

I'm writing this on July 1st -- the 42nd anniversary of me becoming a mother to Elizabeth. June was a busy month with continued doctor's appointments. Included were two Covid 19 tests, two cardiac tests, an appointment with the radiologist, a genetic counseling appointment and a "clip" placement to mark the location of the papilloma scheduled to be removed during surgery. All of this culminated with the surgery to remove the "mucinous carcinoma" on June 30th.

I hope by the time my grandchildren read this at a later date that the Covid 19 virus, which is currently decimating our country, will not be a part of their lives. Over 128,000 Americans have died and 2.7 million people have been confirmed to have contracted the virus. We have no idea how this will end and the impact it will have on schools in the fall. There are huge unemployment numbers nationwide. It almost makes my problem seem miniscule by comparison.

So yesterday was surgery. The plan was to remove the lump and one benign papilloma. Dr. Manders removed the carcinoma, and in the process of removing additional tissue, discovered some cancerous areas in the muscle behind the turmor. It was localized and she felt like she "got it all." To prevent blood clots, I had taken a lovenox injection the night before surgery. This resulted in a hematoma near the sight of the surgery where blood pooled. This initially concerned the nurses in recovery as they placed a sand bag on the area in an attempt to reduce swelling. This worked, and by the time I left the hospital it appeared that the swelling could be reduced with some additional pressure and ice.

Amazingly, I've had practically no pain. I haven't had to take any medication post-surgery and honestly feel like I haven't had surgery at this point. I'm grateful. They expect full pathology reports by Friday. I know this will be followed up with some radiation treatments in a few weeks.

I was only allowed to have one person accompany me at the hospital. Bill graciously gave the "privilege" to Liz because of her medical background. The hospitals are taking every precaution to keep patients and visitors safe. At the entrance they take your temperature, check that you have an appointment and make sure you are properly masked.

Today we had a little time to be with Liz on her birthday before she returned to Columbus. Roland called to say that all three of their kids were sent home from their summer program. Ian was running a slight temperature, Andrew was suffering from allergies, and it was decided to send Nathan home as a precaution. Schools have to be very careful during this pandemic.

As a side note, I had genetic testing on 67genes that are known to be associated with breast cancers and other types of cancers. The good news was that they found "no pathogenic variants" or harmful genetic changes in any one of the genes tested. At my age (71), it is not uncommon to get a cancer that does not have a genetic link. That is good news, and my prognosis appears to be good.

So on with the next adventure. Here's hoping that the July report will be equally positive.

May 2020 - What a Month!

May 2020 did not start out like any other. I was looking forward to spring, a possible road trip with Bill and the opportunity to take our Rad Power Bikes to explore the Ohio to Erie bike trail. Little did we know that a virus was about to overtake the world. The first clue as to just how much our lives were going to change was when the Midterm Election scheduled for March 17th was cancelled by Governor DeWine the night before. Within a couple of days, the Covid19 virus was classified as a pandemic and it was about to take over the country. Ohio instituted a Stay at Home order. Since Bill and I both fell in the “high risk” category, due to both age and health history, we were careful to stay at home as much as possible. Outings included going to the grocery store about once a week and an occasional trip to Lowes or Home Depot.

We were proud of ourselves. We took advantage of our forced quarantine and systematically started doing all of the long-term projects we had put off. Cupboards were cleaned, clothes sorted, attic unloaded, workshop, basement and garage cleaned out and organized. We upgraded the insulation in the attic, replaced our dying furnace and air conditioner and waterproofed and installed a sump pump in our garage.

All was going great until -- I felt a lump in my right breast. I have breasts with dense tissue and when I was young had a few benign cysts removed. My mother was diagnosed with breast cancer at about the age of 54 and eventually died from it (although blessedly lived for 17 years with the aid of radiation and chemotherapy). My sister was diagnosed a couple of years ago with a very early breast cancer and has a good prognosis post-lumpectomy. As we are a "cancer family" my siblings and I are very vigilant about early detection.

So I really wasn't very surprised when the lump was identified as a mucinous carcinoma, a rather uncommon cancer that often has a good prognosis depending on type. Since May 5th, I've had to have several followup appointments in preparation for surgery. This is my May calendar for doctor appointments, including one routine dental appointment and one followup to cataract surgery.

Date	Procedure	Location
5-5-2020	Mammogram and ultrasound	Christ
5-8-2020	Covid19 Test	Christ
5-11-2020	Lump biopsy	Christ
5-14-2020	Routine dental checkup	Byerly
5-18-2020	Meet with Dr. Manders - surgeon	Christ Montgomery
5-21-2020	MRI	Christ Montgomery
5-26-2020	Surgery Pre-Certification - Dr. Dillon	Mercy Eastgate
5-27-2020	Second biopsy based on MRI	Christ Montgomery
5-28-2020	Followup from cataract surgery	CEI
5-28-2020	Surgery Pre-Certification - Dr. Saha	Middletown Cardio

So it's Friday afternoon, May 29th. Yesterday my cardiologist, Dr. Saha would not certify me for surgery without a more recent Echocardiogram and Stress Test. It had been three years. They did an EKG in the office and everything was fine. I spent about 45 minutes on the phone setting up three additional appointments for next week: 1) another Covid19 test on Monday (because the results are only good for seven days), 2) an Echocardiogram at University Hospital for Wednesday at 7:30 and 3) a Stress Test at U.C. West Chester for Thursday at 9:30. I already had an appointment with Dr. McCluskey at Christ Hospital for Wednesday at 9:30 to discuss radiation options. 

Yesterday, I totally "lost" it at my cardiologist's office. I had to drive to Middletown for an appointment because all of their satellite offices are closed during the pandemic. They messed up so many things, including not letting my doctor know the purpose of the visit. The pressure finally got to me. I truly displayed my "Jones" heritage by "Jonesing" it as Tom would say. Up until then, I think I had really handled the stress well, but I guess everyone has a breaking point -- and this was mine.

The second biopsy results are not yet complete. The nurse told me that the pathologist had asked for a review of the results by other pathologists. The good news is that the one lymph node they worried about was fine and the papilloma is not cancerous. However, they may want to remove it as a precaution, because they can "turn." Hopefully, I'll get a final opinion from my surgeon on Monday and still only require a lumpectomy.

To quote Mr. Rogers, "It is a beautiful day in the neighborhood." Temperatures should reach the mid-seventies with blue skies and low humidity. Bill and I hope to ride our bikes. The world, on the other hand, is still chaotic. Covid19 is still a big issue with the country slowly reopening. People differ on what precautions still need to be taken. Add to this that an African-American man died in Minneapolis while handcuffed and in police custody. A policeman placed his knee on the man's neck while he slowly suffocated. This has led to nationwide protests and, unfortunately, rioting in several cities.

I am adding this to my somewhat dormant blog so that my grandsons may at some future date follow along the path I am undertaking. I'm sure there will be ups and downs. I've always found it therapeutic to write, and just the process of writing this has helped me calm down and get a grip. Love to all of my friends and family.

Kath

May 30, 2020

Photo Credit: breast-cancerjourney.com