Finally Passing It On

In my post of February 16, 2012, I shared about receiving from a long-time friend of mine, Carol,  a package that contained a letter from her, a small box with a bracelet, and a book (Savoring God).  The bracelet was silver and pink with a charm inscribed with the words "Love Heals."  The letter shared the story of the origins of the bracelet and how it had been passed on from one Christian woman dealing with breast cancer to another to another and then to me.  It was meant to be a visible encouragement to the person who had it at the time in her possession.

The final part of the letter said that Carol believed that there would come a time when I knew who to pass the bracelet to -- and I did . . . this past weekend. I live in a small rural community and am part of a small church. So, encountering someone I would know well enough to know if she would treasure this bracelet and the thoughts that went with it were minimal. Some individuals I knew did get cancer - - - and did pass away; but their cancer was not breast cancer.

Very recently a woman in my church, someone I have known many years, messaged me to say that she might have breast cancer.  Could we talk.  

The end of September I had been asked to share an abbreviated form of my cancer story and how God gave me peace, strength, and encouragement. This was for a group of ladies who enjoy crafting, many of whom are not believers. A few are, like Jeanne. It was because of that talk, Jeanne was motivated to get a mammogram . . . and then why she was moved to ask me to be someone she could talk to.  I was more than happy to say I would.  The main reason why I had chosen to be relatively open about my experience was to be someone approachable.  I didn't feel I had that in my church/community, as no one ever seemed willing to share their experiences, even if their problems were not as "major" as mine. It just would have been nice to have someone to talk things through with sometimes.  My sources ended up being ladies who were friends of some of my in-laws.  We never met -- still haven't -- but they were as close as a FB messager.  

Jeanne did get the report that she has cancer.  I do not know if she knows what stage it is or if two breasts are affected.  I know she is starting with radiation therapy.  

I knew she was the one who would get the bracelet. So, I worked on my letter, using Carol's for some of the information and then adding my own.  I also printed of a pdf version of a pamphlet. I included a copy of the book Savoring God.  I also printed off the blog entry I wrote here after I received the package. 

Monday morning I went down to Rural Services and put the gift bag in Jeanne's car.  Monday evening I saw her at choir practice -- all of it had soooo touched her. She asked if she could hug me . . . there were tears.  I really believe I made the right choice.  We will see what's ahead these next few months.

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My letter:

This letter includes some references from a letter I received from a long-time friend of mine in Maryland, Carol – actually my high school math teacher at the Christian school I attended. She sent a letter, along with a bracelet and book, on February 14, 2012 – about a week before I finally had my surgery. In fact, that week I received another small gift from another long-time friend and former teacher of mine, Renee, at the same school – a heart-shaped mastectomy pillow that was to help me feel more comfortable during healing.  Someone had made one for her, and she wanted to make one for me.  THEN, I received a note from Becky Totman, along with Val’s bear, the one that had become Val’s companion to appointments and treatments. I have since passed on the bear, as it was not something that was limited in how I could pass it on.

The enclosed bracelet predates 2004, when someone purchased it on Ebay as a gift for a friend of hers in Calvert County, MD, when diagnosed with cancer.  This lady wore it through her second cancer diagnosis in 2006. 

In early 2010, that lady passed the bracelet on to her son’s voice teacher, Robin, when she was newly diagnosed with breast cancer.  Robin wore the bracelet often during the various phases of her treatment.  She decided to share her journey using a “Caringbridge Blog” and went on to write a book based on her experience, Savoring God.

During Robin’s treatments, she chose several women from her church to help in her care. One of those women, in January 2011, was diagnosed with breast cancer, and this bracelet was passed to her with the comment that God would show her where to send the bracelet next.  This woman was blessed with a type of early stage cancer that did not require chemo. She had her initial diagnosis and surgery in Maryland before moving to North Carolina, where she had radiation treatments. This lady fully expected that God would put someone in her path in North Carolina that she could encourage by passing along that book and the silver bracelet; but she heard of my friend Carol’s diagnosis in October 2011. (Carol lives in Calvert County, MD.)

Four months later, after wearing that bracelet during the time she had her surgery and then recovery – she did not need chemo nor radiation – she wanted to pass the bracelet on to me.  

The bracelet says, “Love heals.”  I know that my friends Carol and Renee, as well as these other ladies, would echo my thoughts that it is God’s love, expressed through His redemptive work in our lives, that brings our ultimate healing!  It is also a reminder that He surrounds us with loving caregivers along the journey.  As believers, we have hope…. True hope.

Psalm 103 echoes in my mind:

Bless the Lord, O my soul,

    and all that is within me,

    bless his holy name!

Bless the Lord, O my soul,

    and forget not all his benefits,

who forgives all your iniquity,

    who heals all your diseases,

who redeems your life from the pit,

    who crowns you with steadfast love and mercy,

who satisfies you with good

    so that your youth is renewed like the eagle's.

I’m grateful that you have family, church family, and friends nearby who are already stepping in to demonstrate their care and concern for you.  You will learn, even more than you already do, how powerful the prayers of God’s people are!

When you have triumphantly finished your cancer journey, perhaps you will encounter the next recipient of the bracelet . . . someone who will be encouraged to know God will work through the hard times with her.  I have only known of two other people who have, since me, gone through this battle; but I didn’t feel I knew either well enough to share this message with them and pass the bracelet on. Obviously, God meant it for you. I am sure Carol will be encouraged to know that I have finally passed the bracelet on – not that she ever checked up on me.

With love and prayers,

=

Some added notes:

• It’s worth remembering that although two women may have the exact same diagnosis, they may not get the same exact treatment OR if they do, their bodies might not respond in the same way.  BUT, it’s helpful to know other people’s experiences, as often there are similarities. I didn’t seem to find someone here to share experiences, etc. with. Although I became aware, later on, that at least two or three ladies in our church had had single mastectomies with no radiation or chemo at some point in time, but they kept that to themselves (although two of them were drivers for me AND one had also brought in supper one afternoon because her usual Thursday supper guests weren’t coming.) One other had a single mastectomy, chemo, but no radiation.  My best go-to was a Christian woman – still haven’t met – who is a friend of my sister-in-law’s sister. We are still FB friends. There was a second Christian woman I also became FB friends with. She was a contact through Dennis’s sister Jackie. I don’t want that for you – I want you to have someone local . . . a Christian. I would not normally be one to talk about things like this; BUT, it seemed that if I did, maybe I could be a source of help and encouragement to someone – be the “someone” I didn’t seem to have here.

• It’s worth remembering that treatments improve and change over the years. Yes, it depends on what stage the DRs determine you have; but, I am sure things have improved even since I was at the start of all of this. Make smart choices.

• Like you, I was dealing with tests, “waits,” and plans. For me it was from December into February, with my surgery finally happening almost a month later than initially scheduled.  I went through that Christmas season with a lot of suspicions and a lot of unknowns AND I wasn’t saying a lot about it all until I knew more.  Some people knew what was going on (I was working with Lori Rice then, starting after Christmas break); but I did not put it out to the church as a whole until I knew for sure I had cancer and what was going to be done about it.  

• I am enclosing a copy of my blog entry I wrote about when I got the bracelet. You will see that I struggled for weeks and weeks with even saying the word CANCER. The one lady I shared about had a blog that she turned into a book – not sure I will do that. I do have it saved in an e-blog for two reasons:  (1) So I will remember what God brought me through and what He taught me; and (2) to share at least parts of it with others, which I have mostly done when I share the page(s) of verses. Maybe you will want to do the same, if not an online journal, then a hand-written one.

• In addition to the book by Robin, I am including the PDF copy of a pamphlet another long-time friend (and former teacher . . . same school) shared with me.  Someone had shared it with her when she was dealing with throat cancer.  My sister who has M.S. has also found its points applicable in her own situation and has shared the ideas with ladies’ groups in her church. I think it can also provide some good reading for John.

I already said that I am not a “smother-er” or a “hover-er” or any of that; but I am available to listen . . . to share, as I care – and I remember what I liked as well as what I missed AND what I really didn’t care too much for.  

I am sure I will see you wearing the bracelet occasionally. I didn’t wear it much, but I did keep it in a visible spot on my dresser.

Done! Done

Today was my last trip to Upstate Cancer Center to have a follow-up appointment with Dr. Benjamin. I reached the 10-year mark in taking tamoxifin, the last part of my treaatments, after surgery, chemo, and radiation therapy.  Initially, I was to take the drug for five years, but then research showed a benefit of taking it for seven AND THEN a benefit of taking it for ten years.  Dr. Benjamin teaches at Upstate, and so he definitely has to stay current on his research and studies.  

Initially, all I had to do was travel to the satellite office in Homer, where I went for chemo; but that office was shut down and turned over to Guthrie.  So, I had to go to Syracuse (south side).  I missed seeing my favorite NP, Patty -- although there was one time when she was the NP assigned tor the day in that department.  Aside from Patty, I did have one other NP who did a good job of checking to make sure things were good.  Then I would meet and chat for a few with Dr. B.  I'd leave there feeling confident.  

In 2020 when I went up for my appointment, hospitals and such still required masks in the buildings (from the Covid lockdowns, etc.) and limited where people came into the building.  I donned my trusty purple Aetna freebie mask and headed over to the building, looking for where I could go in.  I entered. A nurse took my temp, and then I had to take one of their masks.  It was a plain bluish disposable mask (never thought those really did anything . . .).  I stuck it on and headed off down the hallway to my wing.  Suddenly, there was a guard behind me. He stopped me and told me my mask was inside out -- not sure how he could tell, but he could.  So, I took it off and reverse it, put it on, and started out. BUT, he stopped me again... My mask was on upside-down.  With my masks I had been using, I never had to think of either of those situations. So, I never thought about how to put my mask on, other than to figure out how to get it affixed to my ears, an area already "full" because of my wearing glasses as well as hearing devices.  Once I took a look at the mask, I saw how he could tell.  There was a small metal-like bar near the top, which I found out eventually, was to help secure the mask a little better to my nose.  This time I got it all right and was on my way.  It was rather amusing, I must say.  One thing I never quite understood was that if they were SOOOOOO careful about germs, etc., why did someone not come over to wipe off the patient seats when a person left ---- OR why there were no spacers.  So many inconsistencies.

When I went back in 2021, the mask rule and limited entrance was still in effect; HOWEVER, this time the mask had the Upstate Cancer Center logo embroidered on the bottom.  Thus, no problems for my getting it on correctly.  

September 2022 has come, and NYS does not require these places to have all people masked.  I did not have to give blood.  I did not have to have screenings beforehand.  Not quite sure why that was . . . I think I could still ask.  Anyhow, because I had reached 10 years with no issues, I was officially released.  Now I am considered as NED -- no evidence of disease.  (It's not 100% accurate to say a cancer person is cured, as there is no guarantee.)  It was great to head out to the sign-out station and not have to schedule an appointment for 2024.  DONE      DONE     DONE

The Interview in the Cortland Standard

 If I can get them pulled up, here is the article written from the interview.  I had to take a picture of it in two parts so that the print might be large enough to read.

An Opportunity to Share

 One reason I kept a written record of my cancer journey was so I could maybe share my experience and encourage someone as a result.

Recently I had a call from my sister-in-law Lori. A features writer from the Cortland Standard was wanting to do a feature on the topic of hope as it relates to cancer survivors.  She asked Lori if she knew anyone who might be willing to be interviewed.  So, Lori called me to ask me if I would consider doing this.  I said that I was willing.  Although it's not me to be so public, I thought that this would be a good thing for me to do.  I had often wished that one of my friends had been more open in her dealing with cancer -- she ended up passing away before I started my battle.

Not too many days later, I received a call from Katie Keyser, the woman doing this feature.  We set up a time for her to come interview me and take some pictures.  

One thing I wanted to be sure to do was to give credit to God for His enabling me to get through my cancer battle as well as I did.  No guarantees, I know, as to what Mrs. Keyser would write afterwards; but at least she would hear about how God gave me peace and kept me from worry.  Actually, that was something that caught her attention. I had printed off the blog entry in which I had written many verses that I remembered and that were shared with me.  They were verses I had on index cards for ready reference  On the sheet I had printed, i had put a red circle beside ones that had been especially meaningful to me.  At the end, I asked her if she would be interested in taking that copy. She had mentioned how she struggled with worry and fear, and so I saw this as an opportunity to give her something to reflect on later. 

I had pulled out my box with my cards, notes, and other items from that year.  The box was one of those fancy ones that Gary and Marilyn had sent me with some treats in it.  The front of it had the Serenity Prayer on it, which Mrs. Keyser noticed.  So, I connected that to what we had been talking about peace . . . about fear . . . about worry.

Things in my box she found interesting -- and took pictures of -- were some of the notes/cards my second graders had made for me.  There also was a Bible study book written by a woman who had had breast cancer to encourage other women who had it.  There was a bracelet with the breast cancer symbol on it that my friend had sent, along with the book.  She took pictures of me as well.

I think the article, which will feature one other woman, will be out in early October.  October is "Breast Cancer Awareness Month."  It will be interesting to see what makes it into the article.

God's Goodness

These past few days I have been reminded of God's goodness to me when I was actively battling my cancer.  I doubt I am the only one who takes for granted good fortune.

Early Saturday morning, a young seven-year-old boy we know,  died due to surgical complications.  Last week this young boy was diagnosed with leukemia.  Friday's surgery was to put a port in him to use for needed treatments for his leukemia.  He ended up dying from internal bleeding that occurred after the surgery  It was a known risk at the outset; but like most who deal with cancer, it is a risk you take without a lot of thought. 

Initially I did not give this much thought.  But when my husband and I were talking about the events of Saturday -- I had been out of town for a few days and he was bringing me up to speed on thing here at home -- he made this comment, "You had a port put in, didn't you?"  I said that I had -- he had been there at the time.  I am not sure that he was familiar with what a port looked like and how it is put in, other than making an incision.  I said to him that I could understand a problem arising, as a port has a small tube that is inserted into a vein near the neck.  It works better in situations in which a person will get a lot of needle-jabbing over a period of time.  For me, it was for my chemo; but I also had the medical staff do blood draws there.  It is meant to save on the veins in the arms.

My port was inserted by a surgeon when I was sedated.  Before I was released to go home, my surgeon had a portable x-ray machine brought to the room.  He wanted to see that everything was looking right with that port before he let me go home.

Was there a risk to me in having a port put in?  Yes.  Did I know that?  Yes.  I had to sign off on the procedure.  Did I give any thought to the possibility that there would be complications?  No.  I think that most of us fall into that line of thinking -- unless we are, by nature, worrywarts. 

I look back at my surgery, implant of my port, chemo, radiation . . .  I really was fortunate to get through it all without any real complications.  I really ought not take that for granted.  God was good to me, and the past few days have been a good reminder of that.

Talan's dad and Dennis have been good friends for years, and so this has been a bit difficult for Dennis.  He can't begin to answer the questions TJ puts to him, as it related to life after death.  I am sure that this will be a point of discussion for weeks, even months, to come.

Milestones

Milestones are goals achieved as a cancer survivor gets farther and farther away from when the journey all began.

I remember thinking at the outset that it seemed all I was doing was adding doctors, having tests, and traveling to appointments.  There was the ob-gyn lady, the mammo lady, the ultrasound lady, the MRI guy, surgeon, the oncologist, the chemo people, the radiation people . . . you get the drift.  Week after week after week, that was all part of my life, starting the end of November 2011 and ending about the middle of October 2012.  The completion of radiation therapy was my first major milestone.  Aside from hormonal therapy (pills), I was done with my vigorous battle with this disease.  I had recovered from my surgery.  I had made it through chemo.  I had finished radiation.

So, what milestones have I reached?

By the end of 2012, I was seeing my surgeon only twice a year.  Getting my port out was the last "invasive" thing he did.  By 2013, I was switched to once a year.  Not sure if I will go back this year or just figure I am done.  My NP at the oncologist's office says that surgeons like to keep tabs on people like me for five years.  To me, it seems that all Dr. Bang checks for is lymphedema and how much I weigh.  Anything else he does, the NP does at the oncologist's office.

January 2013 I was told that if things were good January 2014, then I was done at the radiation oncologist's, since I had other medical people watching out for me.  Dr. Fallon was good.  I never felt hurried when he met with me.  I will always remember what a great waiting area there was:  Keurig machine, electric fireplace, tv, jigsaw puzzle, lots of space.  This office gave its patients $25 gas cards to help with travel expenses.

In the fall of 2014, I changed from every three months' appointments with my oncologist to every six.  My next goal is the yearly plan.  I know that as long as I am taking HT, then I will have to see my oncologist.  The "sad" thing, though is that this month, the Homer office closed.  To keep with Dr. Benjamin, I will have to travel to Syracuse.  Because I think he is very good AND because I like the NP (Patricia), I will travel up there.

Here's looking to the time when I will reach that last milestone -- no more oncologist appointments.

How Good Is God's Family!

 Last evening, Dennis and I went to calling hours for an older man in our church. Dennis knows more of his grown children than I do, and so he would introduce them to me as we went through the line. We came to the last son and wife. After Dennis introduced me, the wife said, "We prayed for you when you were dealing with cancer. You look so good!" Her daughter had dealt with leukemia several years ago, and we had done the same for her. The thing that the woman and I were sharing is that fact that during our difficult times, we experienced that "peace that passes understanding," a peace that is there and just can't be explained. She gave me a huge hug before we parted.

I have found myself amazed at the fact that there were people praying for me that I did/do not know. This is not the first time that I have had someone tell me that she prayed for me during those months three years ago. How good is God's family! 

My New Reality

It has been quite awhile since I last blogged here.  That would be because life has gotten more normal, now that I am almost two years in remission from my battle with breast cancer.  My three-month checks with my oncologist have been uneventful.  My checks with my surgeon have been uneventful, becoming annual checks as of my last visit.

So far, so good.  I am tolerating the side effects of the tamoxifen fairly well.  I figured out that about two hours after I take my doses, one in the morning and one in the evening, I have a time when I am warm and perspiring.  Once that is past, I am good for the rest of the day or night,  My stiffness in my joints I am not sure are a side effect, as it could be my age . . . it could be my genetics, as I have parents with arthritic issues.

Before my most recent oncologist appointment, August 25, I had noticed a small lump just below my scar and just off the center of my chest to the left -- the area where I had the nastier problems to deal with.  The small mass was soft.  I could not feel any hard areas.  I knew that I needed to be sure my oncologist was aware of this, as I seem to be a marvel at growing things -- some harmless and some not.

Both the NP as well as oncologist checked it out and thought that this was not anything serious; however, with my cancer issues in that area, they both thought that I should get it checked out further.  I agreed.  It made sense to be as sure as possible.

I really was not unduly concerned about this mass, and so I did not spend time fretting nor did I lose sleep over it.

Two days later, I had an ultrasound on that area.  That went well.  It seemed odd to be there in that place, as last time I had been there was when I was there in December 2011 for those images which first showed that I had a problem.  That time, the technician had come back in to get more images, as she was sure the radiologist would want more.  This time, there were no extra images taken.  I took that as a good sign.  I would hear the results from that test after Labor Day.

Later that day I received a phone call from my NP.  The radiologist was not ready to give me clearance.  He made several suggestions as to what to do next -- CT scan, MRI, and/or biopsy.  My oncologist chose biopsy.  Because of Labor Day and my not wanting to miss the first day of school, the biopsy was scheduled for September 4.

I did wonder if it would be the same type as last time.  Would it be a simple fine needle aspiration OR would it be one of those core needles (ultrasound guided)? That type was not at all comfy, as each time before when the doctor was going for samples, it felt as if I was being shot by a staple gun.  Multiple samples were taken.

This time I again found it all so surreal -- same nurses as before, same information, same room.   I was familiar with it all because I had had this done before.  My one saving feature was that I figured it would not be as painful this time because so much of the area around my scar is still numb.  So, although I might smart slightly in spots, I probably would not hurt afterwards like last time.

I had another preliminary ultrasound.  The doctor gave me a numbing shot -- not that I felt much of it.  Then he got to work and took three samples.  Because of the size of it, he was able to go through the same small hole each time.  So, patching was minimal.  I had taken the day off school because I knew that I needed to take it easy the rest of the day.

Yes, I did share my situation with some friends so they could join me in prayer about this.  No, I did not lose sleep over this.  I had remembered comments made at the biopsy that made me think things were well . . . . that they, too, thought this was more precautionary than anything else.

I had an appointment to hear the results September 8.  BUT, the results were not yet in.  I had to wait another day.

I came home from school Tuesday to a phone message from my NP that she had good news to share about my results.  I called -- benign mass.  YES!  

I realize that this is my new reality, though.  Anytime I develop some type of mass, no matter how small, it will be checked out to be sure no cancer is starting up again,  I am all right with that.  I realize that can happen.  I also realize that the sooner something cancerous is dealt with, the better the outcome.

The other good news I received was that I now was going to be on a six-month plan for my appointments rather than three.  YEA!!!!!

Summer 2014 -- Physical Therapy

I have had some problems with my left arm/shoulder for years.  When I was in my early 30s, I had crashed into a gym wall as I chased after a volleyball and dislocated my shoulder.  I remember seeing the x-ray of it:  the nob of my humerous was in my armpit.  For a month I was velcroed together to keep my shoulder in place.

I did some physical therapy (PT) for about a month, as I had already made plans to go to California for a few weeks to visit family.  At that time, the PT was rather minimal -- especially as I compare it to what I have done now, about 25 years later.  I never did recover complete use of my shoulder and various activities and positions would aggravate it.  But, I learned to cope with it.

My cancer surgery, followed by rads, had an effect on that same area, although it took time for that to become apparent.  My arm would ache, especially during the night, making it difficult at times to sleep.  I had increasing challenges in certain movements, noticeable when I was washing my hair or turning the steering wheel of my car to make a turn, noticeable when I would turn my head to look back over my shoulder . . .

I mentioned the challenges to my surgeon on my regular follow-up visit in December.  Since he is always concerned about lymphedema, he sent me to a orthopedist.  That visit dispelled the idea that lymphedema was my problem. Probably the problem was rooted in my past injury PLUS the scar tissue of my surgery and the affects of radiation.  I could first try PT, if I was interested in giving that a try.

I waited until spring to contact the orthopedist, as I was still having problems.  She had me get x-rays and set my up for PT.  The x-rays ruled out anything really serious.  What my shoulder was showing was signs of osteoarthritis, along with rotator cuff problems/encapsulitis.

From the last part of May to about the middle of August, I went one to two times a week for PT.  My therapist was Jodie, a woman almost the same age as I.  We clicked.  She had me do exercises there that I would not be able to do at home because of the equipment.  She also gave me some exercises I could do at home with what I have.  While I was there, she would work at trying to loosen up my upper arm/shoulder area.  Although parts of the process was painful, it was manageable -- I knew I needed to have that done so I could get improvement and relief in that area.

My goal was to at least be how I was before my surgery.  If I bettered that, fine.  

I did meet the smaller goals that made up that bigger goal by mid-August.  I also found I was able to do some things I had not been able to do since I dislocated my shoulder.  Wow!

Was it worth it to go to PT?  Yes.

Will I lose what I gained?  Depends on what I do at home with what I have.  I have some bands for stretching/resistance.  I also have two one-pound weights as well as two two-pound weights.  

Will I ever be rid of the discomfort I get at times when I make certain movements?  Probably not, since some of my problems are arthritic.  I am thankful, though, that the aching is gone.  I can sleep through the night.  

Compare the Hair

Like most chemo patients, I lost my hair.  It started to flee from my head just as I was getting my second infusion, two weeks after round one.  Once it started to go, I went ahead and had my friend Becky come over and give me a buzz cut, as I thought it would make the whole process of losing my hair a little less messy and less disheartening.

One question that seems to arise, though is this:  What will my hair be like when it grows back?

• Will it grow in splotches?
• Will it be really curly and frizzy?
• Will it be thinner?
• Will it be the same color?
• Will it have the same texture?

It seems to me that all I knew of were survivors whose hair grew in curlier and wavier than what they had had before.  For some, their hair grew splotchy, although evening out later.

My hair was salt/pepper in color.  My hair was coarse.  My hair had a natural wave to it.  My hair was thick.  I often had women tell me they wish they had hair like mine because the salt/pepper mix was evenly distributed and my hair had a nice wave to it.  I wore my hair somewhat short, and so all I did was "wash and wear."

When my hair began to grow back, it at first looked whiter/greyer than it had been.  I thought I would be all right with that, considering what I had endured.  That would be something to be expected because of the trauma to my body.  My hair did not come in in splotches, and so about 10 weeks after my final chemo infusion, I had enough hair to opt to no longer wear a wig or hat when I went out anywhere.  I did not mind that my hair was short.  I just was glad to be able to let go of the coverings.  About a month after that, I had my sister-in-law give me my first trim, primarily around my ears.  The hairs she cut were white and fine.  Anyone who rubbed my head -- and it was funny ones who were curious and did -- DIFFERENT!

The challenge has been how to style it.  I do not like to put stuff in my hair; but, it tends to hang straight.  My hair is still soft.  My hair is thick, but not in the same way it was because of the texture of my hair now.  The curls I would get at the ends of my hair in the back when my hair was getting longer no longer happened.  I could, in a sense, go longer between haircuts. 

Some think that my hair is more a brown/salt color than it was.

So, take a look here and see what it looks like.  The pictures are pre-chemo and post-chemo.

 

Thoughts That Come and Go

Although I am considered NED (no evidence of disease), I have to admit that reading or hearing that someone has died and cancer is the attributing factor can give me a quick jolt.  A dose of reality, I guess.

Why is it, then, that I am a bit unsettled?  Statistically, on this side of the initial battle, I am in the 67% - 80% of cancer survivors who should make it to the five-year mark and beyond.  My type of cancer has a better chance of being subdued for years, compared to some types.  That figure is for someone categorized at the stage at which I was categorized.  Those I read or hear about could have been at a riskier stage, or they may have survived their disease for many years.  Rarely do I know.

I sometimes wonder, then, what will be written about me and my life, should I succumb to this disease before the Lord returns.  Will my life have made a difference in the lives of my family and of others?   What would I want my memorial service to be like?  Where would I want it to be held?  What am I doing with the time that I currently have?

I do not dwell on these thoughts for long, mostly because I am reminded that not one of us has the guarantee of another minute, hour, day, month, or year.  It does not matter if we are dealing with a disease or not.  Our lives could be over in a flash.  What matters is whether or not we are ready for what lies beyond the grave.  I am.

I think that being jolted a little when confronted with the reality that is cancer is another part of life as a survivor.

-------

This part of November takes my thoughts to my friend Val, who lost her cancer battle three years ago this month. .. 

Sometimes

Sometimes I get weary of all of that is associated with being a cancer survivor.  I don't like October, with all the attention given to breast cancer.  Why?  Because it seems to me that other cancers deserve more attention than they do.  How did breast cancer become the popular cancer?

Sometimes I get weary of not being able to sleep in the positions I used to.  I just can't.  I know that it does affect how much sleep I get nights.  I rarely have a really good sleep because I have yet to find what works best for me, from new position to perhaps different pillows.  I get weary of the chore it is to get turned over from one side to the other or even from my back to either side.

Sometimes I forget what I have been through and its impact on my life and that fact that some things will never be the same.  Sometimes I want to think that life is back to normal -- but it's not.

Sometimes I do think about the possibility that the cancer could return, maybe some place else.  Sometimes I forget that I have a 67% chance of being here in 2017 and 33% of not -- not taking into account the fact that Jesus may come back before then.

Sometimes I wish that my joints and bones were not so stiff after a day at work.  Not sure if it is the floors at school or my age or my genes or side effects of my medicine.

Sometimes I wish I would quit talking about my "battle."  Is it because I need to?  Is it because I don't want others to forget what I have dealt with and am dealing with?  Is it because I have to remind myself of the reality of my life now?

Sometimes I think of the time when none of this will affect me anymore.  God has promised there will be no more sickness in Heaven.  Wow!

-------------------------

The timeless theme, Earth and Heaven will pass away

It's not a dream, God will make all things new that day

Gone is the curse from which I stumbled and fell

Evil is banished to eternal hell

No more night, no more pain

No more tears, never crying again

And praises to the great, "I am"

We will live in the light of the risen Lamb

See all around, now the nations bow down to sing

The only sound is the praises to Christ, our King

Slowly the names from the book are read

I know the King, so there's no need, no need to dread

No more night, no more pain

No more tears, never crying again

And praises to the great, "I am"

We will live in the light of the risen Lamb

See over there, there's a mansion

Oh, that's prepared just for me

Where I will live with my Savior eternally

And there will be no more night, no more pain

No more, no more tears, never crying again

And praises to the great, "I am"

We will live in the light of the risen Lamb

All praises to the great, "I am"

We're gonna live in the lights of the risen Lamb

Written by Walter S. Harrah • Copyright © Warner/Chappell Music, Inc

https://www.youtube.com/watch?v=4iPIi7sunEU

A Year Post-Chemo

July 16, 2012, was the day I finished chemo.  July 16, 2013, was the day I joined 11 others from my church to head to Juneau, Alaska, to help missionaries with the building of their place of worship.  What a difference a year makes! 

My husband helped with the building project.  I helped with the cooking and laundry.  We were gone for about two weeks.

I found my energy levels were not too lacking, although sleep posed a challenge because of the amount of daylight hours (about 20) there.  All of us ladies tended to take a breather afternoons.  I still find my left arm just does not work as well as it once would, but that is probably how it will be because of the amount of surgery and the scar tissue.  That challenge did not really hamper me, although I find that my arm muscles are sorer than usual -- even four or so days after getting home.

God is good.

Santa Beard

I think that I have had a "hair explosion."  It's not just because my head hair is growing quite well -- filling in well and evenly.  I look in the mirror and see what looks like the signs of a white beard on the sides of my face.  UGH!  It's not so much evident on the front part of my face as it is looking at the sides.  It is as if I have grown sideburns. 

I take my fingers to tweak the hair.  There is enough of it that I can do that.  UGH!

My questions have been these:

1)  Is this something new that will always be a visible part of me?  Will it eventually disappear?
2)  Can other people see this as well as I can?
3)  Should I try to trim it or should I just leave it?  I don't want to inadvertently create a more "whiskery" look.

The hair is soft and fine.  It appears that its visibility has a lot to do with the brightness of the lights where I am.

I have read up on this.  I have also asked my friends Carol and Andi about it.  Do I do anything about it or do I just leave it?  This is what I have learned:

Some women shave the area and then wish later that they had not.
Some women shave the area and the "Santa" hair does not return.
Some women just leave it to see what happens, as the thoughts are that this is like baby hair and will eventually disappear.

I can't say that I have heard of this hair being dark or thick.  It seems to grow in light and white.  It is sometimes called "Santa Beard" or some other Santa descriptor.

So, I'll have to see what happens.  I have asked some of my friends how well they see the "Santa Beard," and they will say that they do not notice it until I get up close to them and show them.  I would say, then, that I could deal with this, if it does not disappear over time.

I have decided not to shave it.  I did take some scissors and lightly trimmed the sides a teeny bit, but I think that will not be a problem.  I will just take my chances, believing that this will eventually calm down and not be noticeable, even to me.

De-ported!

Got my port out after having it implanted under my skin, up near my clavicle, 9½ months ago.

The purpose of the port was to make things easier for me and my veins during the period in which I had to do chemotherapy.  Infusions, as well as blood draws, were done through this port.

I remember the day I had it put in -- March 23, 2012.  I had been told the Monday before this by my oncologist that I was going to have to do chemotherapy after all.  We would start that the first week in April.  In the meantime, his office would contact my surgeon to make arrangements to have the port inserted.  As it so  happened, I had an appointment that Monday afternoon with the surgeon.  By the time of my appointment, he knew about my need for a port.  He had on hand a sample of one to show me and to tell me what he was going to be doing -- that Friday morning.

I showed up at the hospital early on March 23.  Although the insertion was to be an out-patient procedure, I was put under for the process.  When I came to, I initially wanted to sleep more, until I realized that if I wanted to leave the hospital, I needed to wake up.

I was patched.  The surgeon had a portable x-ray machine come to my room to get some images to be sure that everything looked good as far as the port was concerned.

My port had its first use the first week in April, when I went for blood work that was preceding my starting chemo.  The nurse had a gadget that was a needle made for use with ports.  She would insert that nasty needle into the "target" that was my port, a raised area that could easily be seen and felt.  The needle had some small tubes attached to it.  These were used to feed things into the port.  Always we would begin with a saline solution.  We knew things were good to go IF when we got a blood return.

Almost always, getting that blood return was not easy.  I would then have to stretch out flatter than I was.  If that did not work, I had to raise my arm.  If that did not work, then I had to turn to my side.  If that did not work, then I had to cough.  It seemed I just might have to stand on my head . . .  Eventually, though, we'd get it.

After I completed chemo, I still had my port.  One reason was that I was needing to have two more CT scans, one the end of July and another the end of November, to be sure some spots seen on an earlier CT scan were not a possible problem.  From the middle of July until the first part of December, I had to go get my port flushed every six weeks.  That would be the usual pattern until the time came when I could get it taken out.

I was excited when the oncologist told me that I could get my port out.  Arrangements were made with my surgeon, and the procedure was taken care of last Tuesday.  Again, it was at the hospital, early.  This time, though, I just had a local anesthetic.  I knew what was happening the entire time.

The gross part was when Dr. Bang was tugging at the port to free it.  He would also cut away the tissue that had grown around the port.  I heard him scraping it, also.  UGH!  Finally, it was free and out.  Pressure was put on my vein, up by my clavicle, to stop the bleeding where the tube from the port had been inserted in March.  I was patched up.  DONE!

I have said to several of my friends that I look at this past year as a time when I have been engaged in a battle.  I am battling a disease.  Getting my port out was an indication to me that for now, I am winning that battle.

To God be the glory.

December 5, 2012

Today marks a year since I received a call at work that my mammogram and ultrasound taken three days earlier showed suspicious areas.  The medical people wanted me to have an MRI to see what that would show.  This was the start of what would be a very challenging year for me.  Now that I am at "anniversaries," I can't help but stop and reflect on this past year.

I will say that at the outset, I did not like to say the word cancer.  Not sure why that was, because I was not in denial.  I think it was more of not liking to think about the seriousness of my situation.  Other people get cancer, not me.

Now, I have a rightful pride in saying that I have indeed battled cancer the past year.  It is an accomplishment to get through major surgery (mine about 7-8 hours), chemotherapy, and radiation therapy.  It is by God's grace that I got through those things as well as I did.  It seems that what I heard most from my colleagues and friends was that I still was able to smile in spite of things.  I attributed my calmness, my peace, to God.

I have commented to more than one person that I think it is wrong to give cancer survivors the idea that if they survive five years after their diagnosis, they are set.  They have won the battle.  Why do I think this is wrong?

1)  Cancer survivors will always be checked to see if cancer has returned.
2)  Cancer does return, even after a cancer survivor passes that five-year mark.

I read entries on the discussion boards the American Cancer Society has.  I see individuals devastated that the disease has returned.  I think these individuals are not Christians, whose trust is in God.  Reading what they share is sad.  They have no hope in what lies ahead for them, should they die; their hope was in medicine, and it has let them down.

I hope that lessons I have learned this past year I will be able to share with others in the future who find themselves in my situation.  God is faithful and He is good.

Yes! A Good Report

I remember the day I was to start chemo and didn't because of spots that had appeared on a CT scan done the end of March.  For a good part of that day, what the oncologist was going to do was not settled.  Should I go up to Syracuse for a PET scan?  Will chemo be a different mix of drugs?

Dr. Benjamin and the radiology doctor decided that the spots were too small for a PET scan to do any good in determining whether or not those spots were cancerous.  (If they were, then my stage would be dropped to IV, which is the first stage of the incurables.)  The radiologist believed that the spots were nothing unusual.  These things sometimes show up in a body after surgery. 

So, the decision was that I go ahead with chemo the following week.  In July, after I finished chemo, I would have a CT scan to see if those spots were still there.

When I went to Dr. Benjamin's office for my first follow-up appointment, he had the results from the newer CT scan.  He said that the spots were no larger.  There were no additional ones.  The fact that they had not disappeared as a result of the chemo was also positive.  He was not yet ready then to say that we are in the clear; I could get my port out.  I would have one more CT scan before my December appointment.  If the spots had not grown, then he would no longer consider them a problem.  I could get my port out.

Today was that appointment.  The spots were gone!  I can get my port out next month -- something that has been a part of me since the end of March.  I am seeing another milestone about to be reached, and I am excited.

God is good.  The spots are gone!

Hm-m-m!

One thing I have found amusing throughout my ordeal in dealing with cancer is how often I have heard this:  "You look really good"

I heard that from people when I was recovering from my surgery.  I heard that when I was undergoing chemo and lost all of my hair.  I heard that while I was going through radiation therapy.  I still hear it from time to time.

This always makes me wonder how it is I am supposed to look.  What are the people's ideas of what people like me who are dealing with cancer should look like, whether it's surgery, chemo, or rads? 

I remember sharing this with a group of people, and I did put it out there to them, "What am I supposed to look like?"

Thinking of My Pal Val

Today marks the second anniversary of the death of one of my best friends, Valerie. We first met in 1984 after she and her husband moved back to the area from Michigan. I had moved here in 1983, and so I had not grown up with her. We got acquainted through our church and Christian school

Because her husband needed to take some classes to get his permanent NYS teacher certification, he went to classes two evenings a week.  At the time Val and I worked at our church’s Christian school – I was still single.  It was not uncommon for us to decide that we’d like to go out for supper occasionally.  Val was one to rarely want to choose.  It seemed that whenever we’d head out, I would ask where she wanted to and she usually would say, “Doesn’t matter to me.”  One time, for something a little different, we decided to go to the gym at church and shoot baskets from different spots.  What we would do is take turns calling out the name of a restaurant in Cortland, and then we would take our shots.  Missed.  Missed.  Missed.  It seemed like we’d run out of options before we got a basket made – not quite sure why we did not try a lay-up or foul shot . . .  I do not remember the final choice from that evening, but I remember the fun we had figuring out where we would go.

Another thing that Val and I did for a few years was to host what we called the "Almost Annual Almost Spring Thing."  The weekend our husbands were off to watch the NYS basketball finals, we'd invite our lady friends over for food and fellowship.  To not have to worry about having enough to eat, each guest was asked to bring a food item to share.  Val and I would take care of the paper products and beverages.  Initially, we thought the time would be spent in eating, playing games, and maybe watching a DVD (probably video back then); but all we ever did was eat and visit.

Val was a friend who, with Patty (now my sister-in-law), would often be a help to me when I was ailing big time.  I lived by myself here in town for twelve years, and there were times that I needed their help.  One time was the period of time in which I was recovering from major surgery that kept me house-bound for a number of weeks.  Another time was after I had “majorly” dislocated my shoulder playing volleyball at church – I was literally HEADED to a wall and put my arms up to protect my head.  Occasional meals as well as helpful rides for appointments she – and Patty – helped with.

When I began to spend time with Dennis, then Val and I would sometimes be joined by the guys, usually going out to eat somewhere.  We’d have the guys sit up front, as about all they would do is talk sports.  Val and I would do some chatting, but we also would poke a little fun at the guys.  Over time, Dennis and Brian became very good friends – and still are.

The Hulls and we two also worked together at church on different committees.  To us, we weren’t just friends, we were Christian friends.  We attended the same church, and we were involved in various ministries of the church.

Eventually Val left teaching and took a part-time job at the local library.  That was a job she enjoyed, as she loved to read.  It was a job that worked well – no pun intended – for what she was about to encounter.

In early 2002, Val was diagnosed with breast cancer.  I do not know all of the specifics because I never asked.  I remember her impending surgery in which the DRs were not sure how extensive it would be, as they would not be able to confirm their suspicions until then.  My father happened to be at the same hospital for hernia surgery in the same out-patient area where Val was that day.  Brian came by to see Dad while Dad was waiting to be discharged.  (Val was sleeping.)  I went over to where Val was, as I knew that she and Brian did not get the news they were hoping.  She had had a single mastectomy and would be staying overnight.

I remember Val’s going through chemo.  It made her nauseous, from the day of her infusion on into a few more days each time.  She dropped out of sight during that time.  Because she and Brian lived way out in the country, Val often would come into town and stay at her parents’ while Brian was at school.  She and Brian preferred no visitors, and so we stayed away, sending cards and notes from time to time to stay in touch.  Eventually she got through her chemo and settled into getting herself built back up.  Her doctor did not recommend radiation therapy, something her family now questions from time to time, especially Brian.  Hindsight is always 100%, but he is not convinced that the doctors did all they could at the start for Val.  Val did hormonal therapy – had a hysterectomy to do away with what could pose a risk to her with taking hormonal therapy.

Val also became very picky about what she ate.  She would go as far as she needed to to be able to purchase food that did not have hormones that would feed her problems.

Her energy returned.  She got involved in the church.  She resumed work at the library.

I remember when I heard, a few years after that, that Val’s cancer was back.   This time it was in her bones.  She had been struggling with being comfortable and sitting comfortable.  Finally, it was determined that she had cancer again.  This time the doctors again used chemo, but that was it.  I remember Val’s saying that in some ways, the chemo was easier; yet I recall the problems she had with her feet and the cracks on the bottoms of them, which were painful.  She’d wear soft, wide sandal shoes when she needed to wear shoes.  Again, she lost her hair.  She said to me, though, that this time she was not as paranoid about things as she had been the first time.  One, she knew more what to expect; two, progress had been made in the field of medicine.

The cancer got back into remission for awhile, but it was not too long before it returned.  It had spread into other areas of Val’s body.  She did what she could for treatment, but then she gave up when it seemed that nothing was going to work any more.

The last time that she and Brian went out with Dennis and me was about two months before she died.  Our tradition was to go to an ice cream stand that serves soft ice cream and get whatever we felt like getting.  We would do this Labor Day weekend.  We could tell that Val was not feeling all that great.  Tiredness seemed to be her constant companion, but she was game to go.

When Val decided that enough was enough, after one more trip to the hospital, hospice was set up and she came home.  It was not many days after she came home that she passed away.

Why do I think of Val?  It goes beyond all this that I have already shared.  Just a little more than 14 months after Val’s death from breast cancer, I was told I had breast cancer – it was not just in one breast, but it was showing signs of starting in the other.  I had noticed a lump in the fall and thought of putting off getting it checked out until spring, but I could hear Val’s voice in my head telling me that was foolish.  Don’t wait.  I didn’t.

Val’s parents have been faithful in their prayers for me.  They often sent notes, dropped by with cookies, or called me to see how I was doing.  Val’s mother said to me early in all of this not to second-guess my decisions.  It would be easy to do, but don’t.  Val’s sister-in-law, who helped often with Val during her illness, was a resource for me.  She also was one of my drivers from time to time.  She was the one who gave me my buzz cut when I knew my hair was starting to fall out.  Brian has also shared some things with me about Val that I did not know, to help me to know more what to expect.  He also was a great help to Dennis, since they were – still are – best buds.

I sometimes wonder when Val’s parents see me what runs through their minds.  Our treatments were different.  My situation, at least initially, was more widespread.  It seems that God’s people prayed me through surgery, chemo, and rads to the extent that I did not have as difficult of a time as Val did.  I think this is what has caused Brian to say to us that he, and the rest of the family, do not believe the doctors did as much as they could have at the start for Val.  I think that this also is what prompted Val’s mother to say to me, “Don’t second-guess yourself.”

It is a weird feeling to have the same disease a best friend had that ended her life.  It makes me think . . . Will my treatments make a difference in my outcome compared to hers?  If not, how soon will I know?  I think that our being best friends and our having this dreaded disease in common will keep Val forever in my mind.  That was a good thing in late 2011, as it motivated me then to get to the doctor.

I sometimes wonder if I did enough to know and understand Val's health issues as she was going through them; but then I remember how it seemed the family kept a lot of it to themselves.  That was how they were.  Sometimes I ask things now, and I think they more readily give me answers than they would have then -- why?  Because I have the same disease.