In memoriam

I’ve really been missing my father the last few days.

In loving memory of

Ronald Lee Jones

Nov 27, 1936 – Dec 3, 2014

Screening update

With every focus on my father recently, I never posted an update regarding my last visit to my breast surgeon, in which she requested a follow up visit because she was concerned about several lumps in my left breast area.  I went back for that follow up and she re-examined and then she said she felt comfortable that it was likely scar tissue from surgery.  She wants to follow up with me again in six months.  That was a good thing, I think.  I recently also visited my oncologist, who agreed with my BSs assessment.  She also ordered for me to undergo another CT of my chest and abdomen as well as a trans-vaginal ultrasound.  All in line with conservative, follow up screening for my “unique” case history.  Cheers to me I guess!  Please wish me luck and good fortune–That I will receive only good results!  My CT and ultrasound are scheduled for December 29, 2014.

Damn my blood pressure!

I have one doctor’s office that operates fairly mindlessly. They are extremely overburdened with patients.  I feel like one of many cattle being herded every time I pay them a visit.  My own doctor there, who I’ve been seeing for five years now (granted I can only get in to see her about once a year, if that), doesn’t even remember who I am.  On my last visit with her she thought I was a new patient.  Seriously, I do understand she has a heavy flow of patients, but damn if I haven’t heard from enough doctors and surgeons how unique my medical history is.  And believe me, being told this by specialists who see unique cases all the time is not in the least bit reassuring.  My case seems to certainly be unique enough to definitely stand out a bit.

Anyway, my only shining light there is my doctor’s nurse practitioner, who I do see more frequently. She always remembers me and what is said in our visits.  She is the one, mindful eye in the whole practice, in my opinion.

Today I had my usual, follow up visit with her. My lack of focus recently with my father’s passing, etc. is clearly present, and lately, more often than not, I’ve overlooked something that I needed to stay mindful of.

You see, women who’ve had double-mastectomies such as me must be careful not to have our blood pressure taken via the arms. This is primarily due to the resection of lymph nodes from our chest area during surgery.  The pressure caused by blood pressure cuffs and other things can cause lymphedema in the arms and/or upper torso area.

Today the nurse mindlessly placed the cuff on my arm and I mindlessly conceded. With every quick squeeze of her hand on the little ball, it grew tighter and tighter.  It felt like my arm was being severed off.  I screamed, “No, you can’t do that, I’ve had double-mastectomies – Get it off, get it off!”  I then quickly pulled the velcroed cuff off my arm and yelled out “dammit!”  I was infuriated with myself, the nurse and their office in general.  At myself for not realizing it until it was already happening to me and with the nurse and practice for continually not noting in my chart this serious thing they needed to be alert about.  Right then I apologized to her, noting my father had just passed and therefore my ability to focus was askew.  I then asked her to boldly note my chart, to specifically add it in the computer while I was standing there, about this very important thing.  Also, as soon as I stepped in the nurse practitioner’s office, I promptly told her this can’t happen again.

Doctor’s offices, particularly nurses need to be more in tune to this. This is something I’m going to look at ways to promote better care of.  Yes, this is something I will work on!  I mean, what if I was taken to the hospital unconscious and no one knew to be careful of this.  My nurse practitioner suggested today that maybe I should think about one of those medical alert bracelets.  I’ll have to investigate this more to be sure that would make the difference.  Stay tuned on this one.

My father

My father passed away the morning of December 3, 2014.

  He had just turned 78 on Thanksgiving day.

He was on hospice care in a nursing home for several months.  In February 2014, while I was still recovering from my double mastectomies I received a call that he had fallen in his home and suffered a severe head injury.  After a couple of weeks in the hospital he had gotten better and we had him transferred to a nursing home to recover further.  His health only deteriorated from there.

The last thing I said to him was that I’d be back to see him later.  Days went by and then he died.  I received the call at work.  The nurse said he had asked for pain medication for stomach pains.  She went to get them and by the time she returned he had passed.

I felt such anguish over not being there; stating I was coming back but had not.  I rushed to the nursing home to find him still lying there propped up in his bed.  I sat with him for a short while crying and saying how sorry I was for not being there, for not coming back.  I held his cold hand and wept, knowing fully this was now only the shell of the person I knew to be my father, that “he” was gone.

The fact was not lost on me that the only other person whose hand I had held after they had passed was that of my mother when she died twenty-eight years ago.  I was only twelve at the time and wanted to touch her one last time.  It was at her funeral and, other than the pastor and his wife, I was the last one in the church.  I stood at her coffin and reached my hand in and placed it on top of hers.  I was taken back by both the way she looked, so unlike how she looked in life, and at just how cold and almost inorganic her lifeless hand felt.  You know without a shadow of a doubt that whatever energy that made up that person, their soul, was truly, long gone.  How anyone can believe we have no soul driving our bodies is beyond me.  As a child of only twelve, this was a shocking revelation to feel simply by touching a hand.  I am older now but it still hit me the exact same way.

I needed that, somehow, in both instances–To touch them one last time.  It was somehow oddly comforting, even with the knowledge they were no longer inhabiting those bodies.

When I was with my father, the chaplain came in and asked if I wanted her to cover him.  I said no, that I would do it.  I tried, but then couldn’t.  We went into another room to wait for my brother so we could decide what cremation service to use.  I was still crying, overwhelmed and shocked at the knowledge he was really gone.  My brother finally arrived and we made the decision on which service to use.  I asked him if he wanted to see him.  He said he would on our way out.  The chaplain said we were welcome to stay but that she would be there to see that his body would be picked up safely by the service.  I couldn’t bring myself to stay any longer and my brother was ready to leave also.  We walked back to the room where a curtain was drawn around my father’s bed.  I wasn’t thinking clearly in not realizing I should prepare my brother for the sight of my father’s body lying there as it was.  I could tell once he drew back the curtain a little that he wasn’t anticipating seeing him like that.  He gasped slightly and uncomfortably turned quickly as he grabbed my coat and scarf.  I still feel awful for that.

For days now I’ve felt haunted wondering if my father had been waiting for me.  Was he feeling lonely and sad?  Was he waiting for me to come back?  It has been almost unbearable, but I can’t keep punishing myself.  I’d told him so many times before that I loved him and have spent months and months visiting him regularly at the nursing home, sometimes three and four times a week.

Many friends have stated that guilt is the first step in the grieving process.  You wonder what you should have, could have, would have done differently to show that person what they meant to you when they were alive.

My father was a sweet man.  Everyone who met him said that.  He certainly had many faults.  My brother and I knew them all too well, but then all of us have our faults.

The fact that my father sat with me through the majority of my chemo treatments after going through the same thing with two wives and then losing them both to cancer.  A lot of men wouldn’t have been able to do that. On one of my visits to his bedside at the nursing home I tried to tell him that.  After saying to him how strong I thought he was for that, he sat quietly for a minute and then said, “did you say you joined the Freemasons?”

There are so many things I will miss about him.  He was a big giver, especially at Christmas time, and he loved being around kids.  He was truly happy being a grandpa.  He lit up being around my nephew.

He did the best he could and whenever I was sick, even if it was just a cold, he’d ask me if he can do anything for me, even stating he would drive an hour or so to bring me whatever I needed – medicine, soup, whatever it might be.  Looking back, I didn’t appreciate him enough for those little ways he showed his love.  Although I was grateful at those times, it was always with the mindset of, “no, I’m fine.  I’m an adult and completely capable of taking care of myself.”  But I know now how much I will miss that, even though it’s been a number of years since he was even capable of doing that.

Photo of my mother and father deep sea fishing (circa early 1970s):


 .                                                               .                        This past year has been primarily dedicated to my father.  Anything to do with my own health, breast cancer status or thoughts on the subject in general have taken a backseat, whether good or bad, to my father’s deterioration and subsequent passing.  It has been another long battle to which I’ve focused whatever energy I’ve had.  I keep remembering Robin Roberts’ words on the subject.  That you have to fight the battle that’s in front of you.  This year, my focus has been on my father, on many fronts.  So much so that it will take me a while to find a new normalcy in life, for whatever the hell that means.

I think that’s why I haven’t written here in months.  My focus was simply, and understandably elsewhere, and not on my continued struggles physically, emotionally, etc. after battling breast cancer.

While still grieving over my father’s passing, which I know will be an ongoing process, and in now stepping back from the steady focus on his care this past year, I hope to return to writing here regularly as I continue my journey on the long road to new boobs and a more resilient life.