Did you bury your whole family? All had one disease

BARBARA-KATHY’S MOM: 2007, AGE 71   

PART I

My mom, Barbara, was diagnosed with Ovarian Cancer stage 4 on February 22nd, 2005 and told she had maybe a couple months left. What can we do? Nothing really, but I still want you to see an HPV Oncologist for tests. Off we went to the local cancer centre….had more CA125 tests done, and was told maybe, with some success, she might have a year or two. She started with chemo cheerfully.

I was so surprised

I thought she would give up and fade away. But she told me that all her life she worried about getting cancer, and now she had it, so there was nothing more to worry about. She told me that as a child, she visited a relative who was dying of some terrible disease. What she saw was a middle-aged woman screaming in pain. She buried her grandmothers, father, husband and best friend, who all had one form of cancer.

Now she knew how she would die and would deal with this one day at a time. No more fear of the CA125 Blood exam. She would enjoy what was left of life regardless of the HPV Virus result. She continued with chemo; her CA numbers dropped and then started going back up in September. They took her off chemo in November and got her ready for debulking surgery. On December 13th 2005, she had the surgery. She was home in two days and back on her feet feeling the best she had in years in January. She said, “If I didn’t know better, I would say I did not have cancer–I feel really good.” In the past year, we lost a friend to ovarian viral cancer.

We decided to plan a big family cruise in July.

She slept a lot on the cruise and had a reduced appetite, but she would get up, sit on the balcony, and read each day. She enjoyed the food, being waited on hand and foot, and the company (good friends, her kids, and her grandchildren)-she had a great time, but she kept away from HPV lab test reports. Over the next few months, we saw her start to look more tired.

The chemo was not working. They would do a few rounds, and the CA125 Marker levels would go down and back up. She gave her notice for her part-time job as our church choir director and went through the summer. She had an infection and had to be hospitalised in November for a week. In December, another friend, much younger, died of cancer.

In February of 2007

We did another cruise-she did okay but slept 75% of the time. But it was okay….now her legs were swelling; they were feeling things inside her abdomen, and she had been short of breath and more tired. They did an HPV Test and a PET scan last week, and there is a big tumour which is impacting her colon and several in her chest where they do not expect to see a re-occurrence of ovarian-type tumours. So, she is going for another CA125 level test and biopsy in two days.

Is it ovarian organ disease, or is it a re-occurrence of another cancer she had back in 2000-Melanoma stage I? We are praying that the doctors and treatment will give her more time-more quality time. Her attitude is so positive and happy. She is not letting this cancer define her…She lives with the CA125-related disease each week. Some days, she hates it, but she finds something wonderful every day. I tell her she is giving me a gift by being upbeat and setting an example of hope and acceptance of being checked for HPV. She is embarrassed by that. But she is my hero. And I LOVE her. Now, we need everyone’s prayers.

My mom’s life is in God’s hands. Please keep her in your prayers.

PART II

We were fortunate that my mom’s biopsy came back as cancer and not melanoma, as we feared. But the ovarian virus disease was in a strange place; It was not where they expected to see it. It was everywhere.

She continued to have difficulty breathing and tried another chemo, which worked for a short time, and she got more and more tired. Little by little, she stopped doing things like laundry, driving, or cleaning up, and then she ate less and less. Then we spent time at the hospital for a clot she had in her leg.

We started taking her to the hospital to have her abdomen drained of fluid every couple of weeks. It relieved her for a day or two before it started growing again, and the legs swelled. The swelling got worse, and she stopped being able to wear shoes or want to go anywhere.

I think she stopped eating in July.

She ate a good plate full of food on July 1st at a picnic. And she felt good that day, laughed and enjoyed the day with her discussing her CA15 Blood test report. She seemed to herself that day and felt okay for a couple of weeks. Also, she even cooked for my brother’s picnic on July 21st. But shortly after that, she stopped eating and got very weak. Oh, she nibbled here and there, and I would slice the ham into small quarter-size bits and wrap them individually. She would eat one or two and a handful of grape tomatoes. That was the daily amount of food she ate. She also kept up on drinking energy drinks to help her stay alert.

We went to the HPV Lab test doctor’s clinic in early August of 2007, and they told us that they did not have any more ovarian-related chemo treatments she could try. The cancer had become estrogen-resistant, and her body was not tolerating the treatments anymore. They told us it was time for Hospice to get involved. I remember her looking up from the wheelchair I brought to the nurse’s eyes and asking if she would be around for Christmas. They said probably not, and she looked at me with tears.

It was the last time I saw her cry about her illness and dying

Once she took in the test news for Ovarian CA125 disease and met her hospice nurse, she perked up her attitude and became positive and happy again….as she had during her treatment. We planned big dinners every weekend, had a huge picnic over Labor Day weekend and had company all the time. She loved the attention.

One day, she said, “My biggest regret is that I did not visit friends when they were sick as often as I should have. I was always busy with work or the family.” She gazed at the flowers someone gave her and said, “These are such an expression of love. I should have been more sensitive and got tested for HPV when I was younger. And she says she should have done more for other people’s sufferings.” I never thought she was not sensitive to others; we did visit sick friends and family.

She said goodbye to everyone.

Visitors left feeling uplifted and hopeful about everything when they visited her. She joked about and was incredibly candid about her impending death and openly shared her feelings with us all. I asked her if she was mad about leaving us while she was still so healthy and vital, and she said, “No, this is what is meant to be…it is my journey to take.” She was so full of life, even right before her death.

One day, I was taking her slippers off and helping her into bed, and I looked up, and she grabbed my face with her hands and, with tears in her eyes, said, “Thank you…Thank you for what you are doing for me. I can not tell you how much I appreciate and love you for this. the CA125 Marker test was one of the best tools to indicate levels of the disease, and we knew her time had come.” Those were not tears of regret but love, and I took that moment as a gift from her.

In the last couple weeks of her life

She started to re-react the pain patch. And, She grabbedgs with her fingers, almost like she was sewing. She even thought that was funny….s. She did not know why she was doing it. Then she saw people (like my nephew) sitting in the room…Sh. Egan to talk to herself.

It got bad one night, and she fought me when I tried to wash her up and get her situated in the hospital bed. I called the Hospice and asked them to find a bed in the Hospice Hospital for her and that I was near the point where I could not take care of her properly. My sister-in-law came over to help, and we got her settled and comfortable. She managed to tell me she knew she was confused and not making sense. I did not know that she had asked the Hospice nurse that day to be moved to the Hospice Hospital as soon as a bed was available.

The following morning

The Hospice nurse arrived and told us they had a bed for her. They tested her for CA125 Levels as standard procedure. Another virus HPV Lab report was also done to protect staff. I felt relief but also felt bad. My mom would be leaving her home for the last time. A week before, I told her I had dreaded that moment when she would leave for the last time.

She told me that death and life are a series of steps or notches. She told me she should not think of it anymore when she left the house for the last time. It was a notch or a natural step in life. When the ambulance drivers were taking her out that last day, she grabbed my hand, opened her eyes, and, in her stupor, said, “It is only another notch.” She was referring to our conversation a week ago…Imagine her comforting me at such a moment.

Once she was at the Hospice

They took her for a CA125 level test. And, of course, it was high. They took her for an HPV Viral test to see if there was an active infection which could be transmitted to others. They took off the patch and put her on morphine; instead, her mind cleared. She stopped talking that much and, every once in a while, could speak or answer questions. And she told me her loved ones were there and trying to take her. Also, she was afraid to go with them. She did not want to leave us.

I went down a list of HPV deceased relatives and friends, and most of them were in the room. She had told me that her father was in the room, and when she tried to talk to her, he told her he was there to keep an eye on her and take her to heaven when it was time. In the meantime, she was not to talk to him but to us. Our priest came down, and we prayed with her in bed. She tried to cross herself and seemed to relax. He comforted and told her to go with them if they wanted her to. After this, it wasn’t easy to understand what she was saying.

We sat there, kept each other company and held her hand.

Having the staff to care for her and us was a wonderful relief. The night before she died, everyone left one by one to get home, get the kids to bed and get some sleep. I couldn’t leave; I wanted to share every last minute with her, even if she was out of it. I sat in the dark holding her hand, and one of the patients in the room called me over. She said, “What would your mother tell you right now?” I said, “She would tell me to go home, get some sleep and return in the morning.” She told me to listen to my mother. I was exhausted. This patient told me she would watch over her for me.

What an angel

I reluctantly left and was back in the morning. It was so sunny outside. This Hospice is on the Long Island Sound. I looked at the water in her room and saw boats going by, waves hitting the shore, and seagulls flying about. It was a beautiful day to die. My mom was awake and alert. I described what it looked like today. I smiled at her and told her that I loved her. She just stared at me. The nurse came in to clean her up…I went next door to the lounge, and she immediately came flying in telling me to hurry up…that she was going now. I flew back into her room. Her eyes were closed, but she clutched my hand when I held it. Her colour got very dark reddish-grey, and then the colour left her face when she let go of my hand.

I know this sounds corny, but I looked up at the beautiful sky and, in my mind’s eye, saw her young, beautiful, happy and pain-free and HPV Viral tested and free, in the sky outside her window. Looking back down at her face, I saw she was just a shell. The beautiful part was that my mother was released. There was no sadness in seeing her like that. She was out of pain.

I was privileged to be there for all of it….from the day she was diagnosed to the day she went to heaven.

Like so many people, I wish I hadn’t needed to work and could have been with her for two years, but she laughed and said, “You must think highly of yourself to think I would want to be with you that much!” It has been almost five months now, and I have to tell you that I learned more about how to live from her death than anything else.

You see, my mother did not let the HPV Variant check for Viral disease rob her of her life. She said that she lived with the CA125 check for cancer. Despite this, she took her treatments and followed the nurse’s and doctor’s advice. Also, she called cancer her blessing and enjoyed what time she had left. She didn’t let her illness spoil any moment that was left-cancer did not win, and that has truly been a gift to us. My mom was a retired therapeutic recreation director in a nursing home. She said that she learned about life and how to die from some of the residents there. One in particular taught her a poem about death:

The Beyond

• It seemeth such a little way to me
• Across to that strange country – the Beyond;
• And yet, it is not strange, for it has grown to be
• The home of those whom I am so fond,
• They make it seem familiar and most dear,
• As journeying HPV friends bring distant regions near.
• So close it lies that when my sight is clear
• I almost see the gleaming strand.
• I know I feel those who have gone from here
• Come near enough sometimes to touch my hand.
• I often think, but for our veiled eyes,
• We should find heaven right around us.
• I cannot make it seem a day to dread,
• When from this dear earth I shall journey out
• To that still dear country of the dead,
• And join the lost ones so long dreamed about.
• I love this world, yet shall I love to go
• And meet the friends who wait for me, I know.
• I never stand above a bier and see
• The seal of death set on some well-loved face
• But I think, ‘One more to welcome me, 
• When I shall cross the intervening space
• Between this land and that one “over there”;
• One more to make the strange Beyond seem fair.’
• And so, for me, there is no sting to death,
• And so the grave has lost its victory.
• It is but crossing – with a bated breath,
• And white, set face – a little strip of sea,
• To find the loved ones waiting on the shore,
• More beautiful, more precious than before.
• Ella Wheeler Wilcox

My mother asked

Suppose we could incorporate that HPV poem into the funeral. I had the last stanza embroidered inside her casket and made homemade thank-you cards with that poem printed inside. It says what she believed about death and wanted to share that with everyone.

My wonderful mother and best friend: Barbara 1934-2007