The Story Continues – 2017

Haven’t posted for some time but have been doing life nonetheless.  Just to tie up some of the loose ends from previous stories.  Mom lived in assisted living at HCR till December of 2016.  She wanted to come home but the split-level house was not her friend.  So we converted a small closet on the first floor into a small restroom, put a bed in the family room and moved her home. She is much happier there and basically adjusted to her one-level-living.

I have told you about the herceptin treatments every three weeks and I originally though they would be finished in July or so.  When Dr. Miles told me we would be treating through September I cried.  After everything that I had been through who knew that taking a treatment every three weeks with zero side effects would be the thing that broke me.  Part of the reaction was due to the “magic five year” pill I am now taking complete with menopausal side effects – hence the mood swing which seemed to shock my oncologist.

Sylvia has had cataract surgery on both her eyes and my sister, Janis, has been diagnosed with Sarcoma since last we chatted here.  I went with her to many of her original appointments which began after she saw a doctor about her back hurting on our Route 66 Spring Break this year.  It took a while to actually get the results of the biopsy and KU sent it to Mayo for confirmation.  Seems like the source tumor is actually behind her knee with hot spots in her spine and one her ribs.  They enrolled her in a clinical trial but the first day of that treatment was traumatic.  She had a full blown reaction to the antibodies they were giving her and her vitals got down to 55/20 before the EMTS took her out of the infusion center and whisked her off the the ER.  She recovered fully but was obviously not a candidate for the trials.  She has now been through four rounds of chemo, lost her hair and is waiting for surgery on the tumor behind her knee after the first of the year.  She is one determined woman.

I have been back four my three month visits with everyone by my radiation doctor and everything seems to be going just fine.  The curl is gone from my hair and it is almost back to normal – just a slightly different texture so far.

Mom fell again in October and spent some time at Providence and then back to HCR for some rehab.  She wore a heart monitor to try to catch her beats going low as the cardiologist really thought we were headed for a pacemaker. He finally got the number he needed and the device was put in this past Monday.  She is home but with restricted movement for her left arm for a while.

It just keeps going…….and that is the good news!!!

So, if you have been following my story you know that my cancer fight took my hair away.  I never really thought of myself as vain but the loss of my hair was tough.  The gift of head coverings allowed me not to feel quite so obvious in public but the morning showers revealed not only the surgical scars but also the lack of hair.  There is a Facebook post going around now that says something like “When I look in the mirror in the morning I just have to say That Can’t Be Right” and this perfectly reflects my reflection. The hair is coming back but it is very curly and not like what I had before.  They say it will eventually get straighter but for now I am having a unique experience each day with these curls.

Late last week Sylvia and I went to the Corner Cafe for a late lunch/early dinner – you know, the blue hair special time of day.  And as we were getting out of the car a woman called to me from two parking spots over – “My husband wants me to tell you that your hair is beautiful”.  I was so struck that I walked over and said thank you and told her the story of cancer and hair loss.  Her husband kept saying “thank you, Jesus” to the story.  And I told them they had no idea how much their compliment meant to me as I work to accept this ‘new normal’.  The kindness of strangers should never be underestimated.  And we should never miss our chance to share that kindness with those we meet each day along our way.

What does it mean to be connected to “a Place”.  People talk about having roots; feeling at home; knowing their neighbors but what is the feeling that goes with these kinds of statements.

I am currently involved with the USD 500 School Academy. Modeled after the local police academy, those of us in the class with spend about about 30 hours of class time learning about USD 500 from the ground up. We have all been in a classroom at some point in time so we all feel like experts in the field of education.  This class will help us learn about learning in the 21st century.

I have seen this strong sense of place from the instructor in this class as well as from the USD 500 officials we have met so far not to mention from the community members enrolled in this adventure.  This is a school district that recently was rewarded by the community with the passing of a bond issue designed to bring all of the facilities in the district into the modern era.

The instructor was taking us through a discussion about mill levies and how taxes support schools.  And during her description it was obvious to all of us that she has this strong “sense of place” – she loves her community and her school district.

My own family is four generations deep in involvement with White Church Elementary and three generations deep with USD 500 High Schools.  Dad went to White Church as did his Father.  I went there and my niece and nephew both did as well.  We love that school. Mom went to Welborn Elementary.  Both Mom and Dad went to Washington Rural HighSchool where the first four of their daughters graduated as well.  That last daughter got access to Sumner Academy of Arts and Sciences as have both of her children but that is a story for another day.

The bond approval is great news for the district – not so much for the family.  Both White Church and Welborn will be torn down as they are both over 100 years old.  Progress is good but it will be hard to lose our “place” when those structures are demolished.  We love those schools as they are now and I feel sure we will love the new facilities that they become but our sense of “place” will be changed.

Sorry if the topic makes some uncomfortable but it is part of my post-cancer life and so I am continuing to share as I go.  When I was of the age to actually go through menopause, I had few to no symptoms.  I seem to remember the occasional hot flash, but nothing that left deep memories for me.

Now I have started a “magic” pill which I will be taking for the next five years to keep my hormones balanced.  The imbalance was actually part of the cancer-causing problem.

The first issue was how much these magic babies would cost since my commitment is five years long.  The good news – with some potassium included I paid $1.48 for a month’s supply. Hurdle one – crossed just fine.

The label on the bottle did say possible dizziness as a side effect and my oncologist had said that it may cause menopause symptoms.  So – you guessed it – I have been nauseous, dizzy and having all those menopause symptoms I missed the first time around – flushed face and chest, hot flashes, mood swings – it has been really fun.

Remembering that I am still fighting a blood clot in my jugular, you will understand that the flushing and dizzy side effects made me question what was causing what to happen.  So, I called my best friends at the doctor’s office and ask for some advice and permission to take vitamin B for the menopause symptoms.  They said not-to-worry and OK on the B.  I will keep you informed as to how this progresses from here because as you know by now – I do not suffer in silence or alone.

I was out in the car running an errand and something in the vehicle ahead of me caught my eye.  The driver actually turned to look at the passenger.  They were obviously having a discussion. Nothing heated. Just a conversation but instead of the usual car talk where neither party actually looks at the other, he turned to watch her as they talked.  I was struck by how often when we talk in the car we simply stare ahead or out the side windows at passing scenery.  But these folks were actually looking at one another.  I will have to try that sometime.

And, then today, I was standing in line at the Post Office to finish mailing more information to the IRS so my 87 year old Mom can get her money back from the government.  And it was brutal to watch the one clerk try to be helpful to the seven folks in front of me in line, each of them having a different need and some of them speaking different languages. The clerk had a little of the “robo pilot” to her service as she obviously had answered all of these questions many times. But she continued to do her best to prompt each customer to ask all of the necessary questions to make sure they each got done what they needed to do.  About 20 minutes into my wait the lady behind me in line complimented me on my hair.  I was so surprised that I confessed to having breast cancer and told her this was the only choice I had as it was growing back.  A few minutes later she asked me if it was coming back in the with the original color and I said yes.  The only change is that is is coming in curly for now.  I had recovered enough by then to actually thank her for the compliment and I told her how much it meant to me for her to comment.  It marked another point in my recovery to be seen as almost “normal” out in public now.  She hesitated and then asked how I was doing and seemed genuinely happy when I said that all seems right for now.

It is the little things.  Look as someone when you talk to them, even in the car.  And compliment someone when you notice a feature.  You never know what it might mean to the person on the receiving end of the conversation.

Well – I thought the only damage I had was a strip of siding on the NW corner of the front of the house.  I called the insurance agent to see about a contractor since I didn’t have a ladder tall enough to reach the damage.  After my discussion with her, I agreed to being placed in the catastrophe pool apologizing as I agreed because I knew some folks had lost their entire homes.

A series of phone calls and missed appointments began.  One contractor was waiting on the claims adjuster to come see the damage so he kept moving his appointment because of those delays.  Anyway – long story short – the claims adjuster came Thursday evening. I mentioned that two of my neighbors had roof damage so I wouldn’t mind if he climbed up there to have a look.  He found damage.  I got to spend about an hour out in the front yard with Apple which generated a few conversations with neighbors so that was a good thing. When he left he told me to expect an email in the next couple of days.

It came today and while I don’t need an entire new roof, the damage does total over $6000. Lucky I had him climb up there, huh.  So now I wait for the contractor person to reschedule and then see what needs to be done from there.  But, I have to say, I love these problems that have a definite solution.  Find the bad parts of the roof.  Get someone to fix them. Get the insurance company to pay for the damage. Done and Done.  Life should always be this simple.

Beginning in 2009, we have traveled for a few days at Spring Break time.  WE is me, Melissa, Janis, Ted and Laura.  We never do anything very exotic.  We started our tradition in Salina, Ks visiting the Eisenhower Presidential Library in Abilene on the way home.  We have done the Tall Grass Prairie Preserve, the Lincoln Library, the Oklahoma City Memorial, Nebraska City Arbor Day farms, Squaw Creek Wildlife Refuge, Bentonville and Eureka Springs, AK, Branson, Mo – you get the picture.  Small trips here in the Heartland.

Laura graduated from Baker in December and Ted will graduate from Sumner Academy in May but they still wanted to take a trip with their Mom and their Aunts so we planned something quickly – start in Lebanon, Missouri; find Route 66 and follow it to Miami, Oklahoma before heading home.  Seems simple enough, right?

Rooms in Lebanon were hard to come by but the Bennett Springs Inn could take five adults for one night so we stayed out on Hgwy 64 by the entrance to Bennett Springs Park. Slight scare when the motel owner said he had us coming one week later, but he had a room and all was well.  We got to meet his boy cat named Grace and we checked into our room and dropped off our stuff.  We went first down to Bennett Springs Park to see the fisher persons standing in the cold water to get their trout.  The area was rustic and pretty and not real busy yet so relaxing.

We went in to Lebanon to find food and coffee for the next morning.  We found the old Route 66 signs but the museums were closed – as in empty and closed.  We went looking for an old restaurant I used to frequent with women bowlers and we think we found it but their was a dumpster outside which Melissa thought might indicate it was under renovation – so we giggled and ate at Taco Johns.  Back to the motel and enjoyed the smell of grilled trout being cooked outside the rooms by our neighbors.

Up the next morning to a grey day but dry even though snow had been predicted.  Had a visit with one of our neighbors who told us everything about his life; grew up in Mexico, Mo, retired at the age of 52 when the brick factory owned by Kit Bond’s Dad closed, traveled every since, lost a son to a drunk driver in 2002, and loves to carve with the cedar scraps he finds on his trip.  He showed us one of his walking sticks made for the daughter of the owner of the park where he keeps his travel trailer.  It was quite the exchange.  Another neighbor told us why he kept one of his dogs on a leash but I honestly can’t bring myself to write the reason here. Got air in one of the tires with help from the motel owner and we were off to Miami, Ok.

Traveled through Joplin and found another Route 66 sign.  Decided to go ahead and get to Miami rather than wander on the slow-leaking tire.  Missed the first exit off the freeway but got back road directions from the toll clerk and found our way into town and into our room. Dropped off our bags and went looking for food.  Ate at the Buttered Buns Cafe at the suggestion of the hotel clerk and had great food at a very decent price.  Got to giggling about “one booth too far” and “leaky beans” – comments overheard during dinner.  We will write a song someday incorporating both of these lines.

Ask about Micky Mantle’s home and the waitress sent us around the corner to Commerce OK. where we found some Route 66 memorabilia in the shape of an old Conoco gas station and another gas station made into an ice cream stand.  Neither of them were open. Went back to the room and crashed which really worked well for me as I was a little anxious about my first trip away from my medical support team.

The next morning we followed some instructions from the Internet trying to find a piece of the original Route 66.  We went down gravel roads and muddy roads and finally found a monument that we had actually passed on the way into town the day before.  We could have found it by staying on paved roads all along but we would not have giggled as much. We took pictures of a Micky Mantle statue in Commerce, OK and found his childhood home so Janis could read us the Historical Marker on the door (a tradition we began in Salina back in 2009).

Drove back home via Hgwy 69 which took us through the remnants of the mining industry down in that part of Oklahoma and Kansas.  There were just huge piles of slag left behind when the industry of mining left the area.  Who says we don’t need the EPA.  Stopped at Fort Scott, Kansas on the way home and arrived back to see GMA and pick up Apple around 4 PM.

Short trips laughing our way through rural areas are exactly what the doctor ordered after cancer and assisted living for Mom and all of us still grieving Dad.  It is good to do these things together.

 

The whole time I was sick I could not focus on anything but getting well. I struggled to even read any thing because I could not focus and I love to read and learn.  I finally got a recommendation from friend Jennifer to read some wonderful mysteries by Louise Penny and got back into the pattern of reading nightly.  It was good to start with fiction and now I am working my way back to my true love of non-fiction; history, current events, behavioral psychology, marketing.

My Sunday mornings are spent watching my favorite TV show ever – Sunday Morning on CBS.  I have had a standing Sunday date with all three of the hosts for over 30 years.  I now allow myself to use the DVR so I can meet them at a time of my choosing (without advertisements, thank you) but I meet them still.  I even have the theme song as my cell phone ring tone.

I have also developed a healthy podcast listening habit.  I listen to tech guys, money advisors, RV travelers, online marketers and weekly shows about news of the future.  I love the ability to touch a button on my phone and have new ideas put into my head.

This morning I have listened to folks talk about mindfulness, future studies, the philosophy of frugality and then went on to watch the Sunday Show with the wide variety of stories followed by an interview with a young man helping to organize Black Lives Matter and a local panel of leaders discussing the death penalty.  And with each topic change and new idea expressed, I want to dive deeper and do more research and learn more about that topic.

I must be getting better.

Back in the day when I was working for the Court and traveling across the country to convince Judges and others to try using the Internet for filing pleadings with Court offices after paper having been the sacred material since the beginning of jurisprudence (1997-2009), I had a dental problem.  That problem made public speaking a bit on an adventure so I sought out dental help which took the form of every tooth in my mouth enduring a root canal with a cap then being applied and planted via a small spike into the remaining root. It took several all-day trips to the dentist office.  It took a lot of money. And the result was gorgeous and seemed very durable.

When I retired in 2009, one of the lower teeth decided to work loose and it needed to be replanted almost daily. And now, these many years later, it needs to be replanted multiple times a day.  And two weeks ago one of the top teeth decided to jump ship – twice.  So far it has remained planted after the second escape attempt but it is loose none the less.

Today I finally saw a Dentist who is more like a family friend having taken care of my sister and her two kids and having taken care of Mom after her second fall last year that planted her upper plate firmly into the roof of her mouth.  She worked Mom back to having a good plate in place and she is a good and kind dentist and person.

After listening to the stories about my last 10 months of cancer battle, and after taking multiple xrays she reviewed the pictures with me and recommended that dentures would be much more cost effective as a solution than trying to save these planted caps. Dentures!

We will wait until I am no longer on blood thinner to do the extraction work that will be required to do this work.  Dentures. And I finish the herceptin delivery in June and expect the port to be removed fairly soon after that. Dentures. Did all that I have been through contribute to this outcome – maybe – but come on, dentures?? Vanity should be the least of my vices now but this denotes something about aging that I am just not ready to feel fully.  Oh well, survival is the name of the game now – not vanity.

I thought I was going to see all three of my doctors in a two day span.  That was not to be. My first appointment was with my radiation doctor. I thought I was having labs drawn at 1:45 and seeing hi at 2.  The reminder call I received the day before said I was seeing him at 1:30 so the Infusion Center scheduler agreed to just take me for labs when that finished. Day two I arrived at 9:30 to see my surgeon thinking I had an 11 am appointment with my medical oncologist after that.  At 10:30 I was still in the waiting room.  I was furious. I quietly went to the receptionist and said “I thought a 9:45 appointment would allow me to keep my 11 appointment at the Cancer Center but I was wrong.  Please reschedule me.  She did. Sylvia and I went out to the elevators and I was still fuming.  The doors finally opened but the people getting off the elevator seemed to think we were in their way and after the hallway dance was finished the elevator was gone.  I assaulted the call button.  I mean I lost it big time.  But that, of course, did nothing to speed things up.  The elevator came when it came and we left in time to get to the Cancer Center for my 11 am appointment which – you guessed it – was not on the books.  They did take me in early for my herceptin treatment but no order for treatment was entered so we got to wait again.  The good news is my flash of temper was gone and I knew the nurse from previous visits so we played our way through the delay.  A normal treatment takes 30 minutes.  I left that day at 2 PM without having seen either my surgeon or my medical oncologist.  I told Sylvia I am so grateful that nothing like that had happened to me when I was really sick.

But enough about the logistics and on to the meat of the conversations.  My radiation doctor said my skin was healing on schedule and that the brown, flaky patches were actually looking good and right where I should be.  I asked him about my prognosis.  He started with a statement about why he doesn’t like the term “remission” as it has a specific medical definition involving blood cancers and it leaves folks expecting cancer to return. He preferred the term “no evidence of cancer”.  I told him my Court background made the word evidence resonate with me as well and then I asked if he was saying that about me and he said yes.  I heard the words but did not let them in fully at the time.  He described how his part of my care would continue for about a year and then he said the most interesting thing. He told me that the hard part was coming now.  After almost a year of having my daily activities dictated by doctors and techs, I would now be on my own to find my own way through daily activities and that some patients found that very disorienting.  I was charmed by this statement not expecting a radiation doc to be so attentive to my emotional reactions. I did repeat the phrase a couple of times outloud as the day progressed but I hadn’t felt it in my heart.

I kept the rescheduled appointment with my surgeon the Monday after all this activity.  She was pleased with the surgical site and gave me her long term care schedule for the next few years.  Everyone will be watching me carefully.  When I shared the “no evidence of cancer” statement she agreed.  When I asked her how they knew that she described scans (which I have not had) and blood work and her visual inspection of the area during surgery.  She also repeated that no lymph node involvement had been found during surgery.  She agreed with the statement.

So now I wait to hear it from my medical oncologist in a couple of weeks.  I have been trying the idea on for size emotionally.  I know I am feeling fairly good although my stamina needs rebuilding.  I still have the blood clot in my neck and am still doing belly shots twice a day of blood thinner for that.  My surgeon said that my medical oncologist will tell me how quickly after the herceptin stops in June we can remove the port.  She implied that the blood clot might reabsorb when that is gone.

I was told on May 13, 2016 that I had cancer.  It has been a long, tedious journey and I have been reliving some of the low spots and high spots.  I was very sick from the chemo. I had to have my port replaced. I developed a blood clot after surgery. Radiation went fairly smoothly was was 28 days of appointments.  It has been the organizing factor of my life for 10 months and I still have a few to go.  But, I am finally able to hear and feel the meaning of “no evidence of cancer”.  Sure hope my medical oncologist says the same thing.