I don't know if I can get through this but will try.  You all have been so kind.  Wanted to tell you about Sharon and I.  We would have been together 30 yrs. this Dec.  Sharon was diagnosed with tongue cancer in Dec. 2011.  She went through surgery, chemo. and radiation. 3mos. of chemo 2 times a wk. and daily radiation for 3 mos.  We always had hope that she would be OK.  She was cancer free until Feb. 2013 and was diagnosed with cancer on the floor of the mouth under the tongue.  Both cancers were Stage 4 Squamous cell.  She started chemo again. 2 mos. of a heavy duty chemo using numerous poison once a wk. and was scheduled for 6 mos. of targeted chemo also once a wk.  Throughout her treatment she resisted having a port to administer the chemo.  When we would go to get treatment the only greeting we ever received from the nurses was "do you have a port"?  Finally, one nurse told us they could refuse to treat her unless she had a port.  No other way to describe it but this nurse was 'rude and mean". Actually yelled at Sharon.  I told the nurse you will never touch Sharon and asked to speak with the supervisor.  The supervisor spoke with us and tried to explain that the drugs Sharon was receiving were highly toxic and if one of them leaked into her blood it could be fatal.  Sharon told the supervisor she would think about it but also explained that she only had a few more treatments of the toxic chemos. so why change what had been working.  We talked about it and because the supervisor used the word fatal Sharon said she would get a port.  She was afraid with her luck something might happen. 

Sharon had the port inserted in April and shortly after that started complaining that she had back pain.  Apparently Sharon's feelings about not wanting a port because of a fear of infection (we had heard so many stories about ports getting infected) became a reality.  In May I took Sharon to the hospital, the port resulted in a staff infection.  The Drs. removed the port and she was in intensive care for 3 days.  Meanwhile she continued to complain about her back.  She was put on some strong antibiotics and discharged after about 7 days. 

We went back to the oncologist a couple of wks. later and asked if he could order a scan of her back because of the pain which was getting worse.  He said it was important that she proceed with chemo and the back pain was probably just a little arthritis.  Each time we saw the oncologist we talked about the back pain and each time he discounted it. Each visit also included blood tests and her WBC was always good, RBC at times was a little low but nothing to worry about the Dr. said.

Finally, the pain got so bad a chiropractor friend of mine took an x-ray of Sharon's back.  It showed she had a compression fracture of over 50% in the T7 and T8 area of her spine.  Once this report was sent to the oncologist he agreed to order a MRI.  The hospital had a long wait time so I found an outside facility that could see her sooner.  This facility is able to give the results of the test while you wait.  I was scared and so was she.  The nurse told us that she now had cancer in her spine.  After Sharon's oncologist reviewed those results with us he told us he wasn't sure it was cancer so he ordered a PET scan to check activity level.  The pet scan showed 6.0 activity which was considered minimal compared to the 14.5 activity on the floor of the mouth.  The Dr. explained that the cancer under the tongue was now 4.0 activity and was in remission but we had to start radiation for the back immediately every day for 2 wks.  After 3-4 treatments we met again with the oncologist and Sharon told him there was no improvement.  We asked if she could get this procedure done whereby cement is injected into the spine that helps cushion the fracture so she could just have some relief from the pain.  The Dr. said no, "you will have less pain because of radiation and the steroids I'm giving you".  Sharon and I pleaded with him about the procedure because of so much back pain and promised she would continue radiation after the procedure but there was no changing his mind, we were also concerned about the terrible side effects of radiation that she experienced previously.  Especially the sores in her mouth making it even more difficult for her to get any kind of soft foods and nourishment.

The back pain did not improve, it got worse.  The only nourishment she had was occasional yogurt or some Ensure and even that was difficult because there were sores all over her mouth, inside her mouth, and in her throat.  Finally a home health nurse talk us into her going into the hospital.  I told the nurse if you take her she will die, I just knew it.  No one could take better care of Sharon that me, Sharon knew this too but she could barely walk without extreme pain.

She was admitted July 25th, she was given heavy duty pain medication and nothing seemed to help.  After another scan and MRI an infectious disease Dr. came in the room and told us she did not have cancer in her back.  She had some type of pus bag located where the compression fracture was and it was a staff infection.  He said it would take a couple of days to identify the correct antibiotics but he thought she would be OK.  It took 4 days to get the right antibiotics, meanwhile the staff is spreading, the pain is worse, she had very little nourishment because sores in her mouth were not any better.  The damage was done, too little, too late. 

Too little, too late, for the antibiotics, too late to treat side effects of radiation, no nourishment, the staff was beyond treatment and pain was extreme. 

She didn't need radiation, she didn't have cancer in her back.  What she needed was more testing on her back pain and the proper treatment for that.  Perhaps the staff was in her back when she was hospitalized in May for the port staff infection.  Maybe it spread to her back at that time.  I don't know.

This is the first time I've been able to talk about Sharon's story in detail.  Two things, I feel extreme sadness and extreme anger.  Sharon didn't want to die, she didn't want to leave me but unfortunately she also wanted to try to do everything the Dr.'s told her to do.  The cancer under her tongue was in remission and her lungs, heart, etc. were good.  Nothing ever showed up in her WBC in regard to infection, I don't understand.

I brought her home on July 31st, she had visitors and talked and laughed a little telling everyone they finally found out what was wrong and she was going to get the right meds.  She never knew I signed her up for hospice so she could get more services just in case her faith in being healed came true.  She was sent home with automatic drips of morphine for pain.  The medical director told me it could be hours and also miracles do happen and maybe with Sharon they would.  The director also told me that treatment may be too late. 

I laid in the hospital bed with her that night as she talked about hope and getting better and starting over in the new house we had just bought 2 mos. before all of this.  I kept petting her head assuring her that we would.  She held my hand so tight that night it felt numb but it was OK.  We said our prayers and laid close. 

The next morning I could tell Sharon's breathing was more labored.  The hospice nurse came and she told me she was dying.  While I was crying I jumped up and gathered every picture of us, our parents, family members and friends that I could find and laid them in the bed with us. I grabbed my mom's cross and put our hands around it.  I kept telling Sharon how much I loved her, that I didn't want her to go but if she had to I would be OK.  I described every picture that surrounded us each with its own story.  I kept holding her praying and crying.  She finally took her last breath.  The nurse gave us a little time alone and I knew I lied.  I did not want her to go, I would not be OK.  I will never be the same, Sharon gave me purpose.

I'm certain I rambled at times, sorry.  But its like I don't want to forget anything and this is the first time I've been able to get through the whole thing without stopping.

Sharon died on Aug. 1st, my birthday was Aug. 5th.  Family got me a cake, I didn't want one but they did.  One good thing, they did not sing happy birthday.  Instead I asked them if we could all say the Our Father and we did.  That was dedicated to Sharon, the love of my life for 30 yrs. 

My prayers are for all of us and all of those we've loved and lost.  Thank you for listening. Geri

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Comment by Care Johnson on September 24, 2013 at 12:20pm

Geri, your words are very powerful in your descriptions of what happened with your beloved Sharon. I, too, lost my love of 35 years to cancer and experienced similar "mistakes" or "mis-actions" on behalf of the doctors, hospitals, techs, etc. It's a tough road to follow when you try so hard to keep them alive and their spirits high, knowing there is so very little you can do to help them besides being there for them. I know Sharon was happy with all you did for her and don't ever regret any moment of it because it is your life, too, and your experiences that make you stronger, wiser, and open to helping others eventually.

You will never forget anything about Sharon for as long as you live. Your love will transcend all barriers and eventually, you will have visits from her (or you may already be having them). Thank you for sharing your story. If there is anything I can do for you, please let me know. It's been 4 years since my BJ joined the angels, but there isn't a day that goes by when I don't miss her, think about her, and always wish she were still here in her physical body beside me.

Namaste,

Care Johnson

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