Wrapping It Up

Today marks the third anniversary of my ovarian cancer diagnosis. I had my last CT scan about a month and a half ago, and it showed rapid growth of tumors, particularly on my liver and spleen. My CA-125 (tumor marker) 5 weeks ago was in the mid-600s which is where it was when I was first diagnosed. I also had an embolism in my left lung which is apparently common for cancer patients, but I have felt no symptoms from it.

I met with my oncologist a few weeks ago, and have decided to suspend any further treatment. The Avastin is no longer working for me–it usually will slow cancer growth down for about 6 months but I got about a year out of it. So I am officially on hospice now, even though I mostly feel okay and can still do things for myself, gradually with more and more effort it seems. I have been asking here and there throughout my treatments exactly how one dies from ovarian cancer but never got a straight answer. In my last meeting with the doctor he painted a grim picture of intestinal blockage and throwing up alot, so I was feeling some anxiety about that. When the hospice people met with me the first time and I told them his description, they looked at me like I was crazy. They countered with a peaceful, albeit drug-induced serenity at the end. I figure they know a heck of a lot more than he does about dying, so I’m going with their version.

I do want to share a few insights I’ve gained through this 3 year journey in an effort to “unmask” some realities of ovarian cancer. Here are some things I have learned:

  1. Don’t get your port taken out after your first round of chemo. I was foolishly hoping that if I removed it, the cancer would disappear too. My first scan was completely clean after chemo. Six months later it was back with a vengeance and I was sorry I had to go back and get a new port put in.
  2. When your platinum drugs start to fail, don’t rely on Avastin alone to keep the cancer under control. Parb inhibitors are the latest drugs, and there are more being developed all the time.
  3. I took the dewormer, Fenbendazole for about a year. It was impossible to tell if it helped or it was the Avastin alone that slowed down my cancer, but in all my reading and groups with ovarian cancer, I did not hear of anyone that was cured using it. I do believe some cancers respond to it, but I don’t think ovarian is one.

The worst I had to endure:

  1. The initial surgery I had in which they removed two small sections of my colon, forever ruined my digestive system. Without getting too graphic, let’s just say it all became very unpredictable and traveling or even leaving the house for any length of time was scary because I didn’t know what would happen, and there was no stopping whatever was coming.
  2. Although I have been told this is very rare, the carboplatin attacked my bladder to the point that I was having to urinate constantly. Even the oncologist finally acknowledged that it was the carboplatin because when we started the second round of chemo a year later, it happened again. And when we stopped it, it gradually went away. This was so bad, I can’t even stand to think about it! I’m sure my life would have been extended another year if this had not occurred.
  3. Losing my hair of course, and to think this is third on my list says alot about the other two! You’ve heard of chemo curl, in which your hair turns curly after having chemo treatments? Well, this I have never heard of–my hair went from very thick, naturally curly hair to limp, soft and straight. I learned to appreciate my curly hair.

The best part of the last three years:

  1. Having the gift of three years of life to do many things I needed and wanted to do. I got to retire! I did a ton of family history work! I took a few trips I’ve always wanted to take! I got to see my granddaughter growing up and spend some time with her! I did a blog to help others! I learned a little about drawing and water coloring! I’ve read some fantastic books! Lately I’m trying to see every good movie out there that I’ve never seen before. I cherish all that I’ve been able to do and accomplish.

My last thought is please don’t feel sorry for me–I don’t feel sorry for me! I have a strong faith in the next life and hope for a better world. 2020 has been a difficult year for all of us, and the worst for me, next to 2017 when I was diagnosed. I posted Mount Rushmore as my featured image, from the trip I took there last year. A reminder of the strength of our great country and hope for the future.

My love and thanks to all who have helped me and continue to make it all worthwhile.

Living With the Known and the Unknown

What is the first thing you think of when you wake up these days? If you’re anything like me, you can hear Sonny and Cher singing “I’ve Got You Babe” in your head, and begin to prepare yourself for another Groundhog Day. It is not a happy thought–just ask Bill Murray. Although some things are monotously the same, life has a way of throwing unexpected curveballs at you. Since the time I last updated this blog, my nearby aunt abruptly passed away and family members in another state experienced a tragic, life-altering automobile accident. My granddaughter is facing her next open heart surgery soon which effects all of us, particularly her loving and devoted parents. There is nothing “safe” about this life even when you are hunkered down at home.

In two months I have seen my tumor marker increase by 21, 40, and now 68 points, in 3 week increments. It is now up to 441 which means the tumors are growing faster. I was a bit shocked and discouraged at this last increase, but the every day challenges of those that I love, and even those I don’t know, put things into perspective for me. I don’t have any new recommendations for curing or slowing cancer, nor am I even looking for them at this point. I look only to live each day choosing JOY over cynicism. For those who know me well, you understand the mountain I have to climb but I am working on it.

May a recommend a few things that have helped me:

Although I usually plant a garden of both vegetables and flowers, I am limited in what I can do physically now so that is not happening this year. But each year I decorate the front porch with geraniums and potted flowers (see featured image above). They add color and joy to my life, and hopefully to the lives of people who walk or drive by the house.

I discovered a new TV show called “Grace Notes” on BYU-TV which is on Sundays but can be watched at any time at byutv.org. It features popular musicians and their stories of discouragement, faith and the uplifting influence of music in their lives. Twenty-five minutes of pure joy.

I watched the story of an angry, cynical journalist whose life was transformed after he was assigned to interview Mr. Rogers. It’s called “A Beautiful Day in the Neighborhood” with Tom Hanks as Mr. Rogers. It will uplift and bless your life, and you will love your family more.

And lastly, I read the story of Alice Marie Johnson in “After Life: My Journey From Incarceration To Freedom”. This is the woman who was convicted of drug charges and sentenced to life in prison for being a go-between for drug dealers. She freely admits she made a mistake, but rightfully submits that a life sentence without parole was too harsh. But the story wasn’t really about the rights and wrongs of the criminal justice system to me–it was about the incredible, beautiful way in which she faced her “hopeless” life in a physical prison. She took the Bible, her faith, love and prayers and turned them into action which uplifted all around her. She wrote and organized yearly Christmas and Easter pageants, casting her fellow inmates as angels, shepherds and wise men. She volunteered in a hospice wing, holding and listening to women who had been forgotten by society and their own families. It is a story of hope–that is, a hope rooted in trusting God and his promises.

“Happy is he,” said the Psalmist, “that hath the God of Jacob for his help, whose hope is in the Lord his God.” (Psalm 146:5)


Time Travel

As the year 2020 has opened to view, I was recently inspired by the first episode in the new year of “Music and the Spoken Word.” Narrator Lloyd Newell quotes the H.G. Wells classic novel The Time Machine: “We all have our time machines, don’t we? Those that take us back are memories, and those that carry us forward are dreams.”

He goes on to say that “Our memories, in a sense, allow us to revisit those moments in the past that have shaped us, taught us, and made us who we are. And our dreams point us forward and keep us focused and striving on what we want to become. Without memories, our lives have no foundation; without dreams, they have no direction. Memories and dreams give us stability in an unstable world.”

Last week I met with my oncologist to review the scan I had last month and to discuss the progress of my cancer. Here I was reminded of just how unstable my world is at this point in time. He did admit that I was doing better than he expected, but was unable or unwilling to say if he thought the Fenben (dewormer) was the reason, or the Avastin, or possibly a combination of both. I understand that when you are doing both, it is impossible to tell what is helping. I asked him if he had other patients that did as well on the Avastin alone, and he said yes. We looked at my labs, particularly the Ca-125 tumor marker throughout my treatments. He had a graph on his computer that showed it going up pretty consistently since last spring–about 20 to 30 points a month, to where it is up to 165 as of December. I asked at what point does one become concerned? “When it starts doubling” was his reply. He also pointed out that although the tumor growth in my body is slow, there is a rather large mass on my liver, indicating with his hands the actual size. It was somewhat shocking to see that, but I needed to see it. He said he thought I would start experiencing “symptoms” (abdominal pain) in about 6 months at this rate. We discussed other medication options, ultimately deciding to continue with the Avastin and the dewormer, but to add another pill to the mix. Tamoxifen, an anti-estrogen drug, is traditionally given to breast cancer patients, but they have had some good results with ovarian cancer as well. I should say mixed results because some it helps, some it does not help, but he thought it was worth a try now rather than later.

So I went home discouraged a bit, much less confident about my future. Which brings me back to the time travel. As I searched for a picture to post with this month’s blog I was reminded of what a great life I have had with so many exceptional memories in each phase of my journey. It was hard to choose just one. I picked a photo from the year 2000 of me after running a 5K race on the 4th of July. I was never a great runner but I loved it, and did it consistently for over 25 years, up until my diagnosis and surgery. There is one big takeaway, among many, that I learned as a result of running that keeps me “focused and striving” amidst my challenges. When you run, you will inevitably become injured, and I did have my fair share of injuries. Because I was unwilling to quit, and needed that physicality in my life, I would just examine myself and say, okay, what part of your body works? At that point I would rest the part that hurt, and go to the gym and use a machine that would let me exercise the parts of my body that still worked. I used the elliptical, or the rower, or the stair stepper, or just walked. It was a pattern that worked well for me. And as I look at my present and future and what I can do successfully with this body, I find there is plenty I can do every day to enrich not only my own life, but the lives of others, even if I never leave the house. I finished a needlepoint project that I’ve been working on for years; I picked up where I left off in an online drawing class I was doing in 2016; I’m learning to water paint, reading, researching my family history and writing this blog to hopefully help others that are going through the same thing I am.

I close with the concluding words of the broadcast I mentioned above. “Actual time travel exists only in science fiction, but memories and dreams can help us appreciate the past and embrace the future. If we hold on to those memories that strengthen us and to those dreams that empower us, the past and the future can give meaning to the present.”

Best wishes to all.

Thoughts About Miracles

When last I reported on my physical condition, I had been laid out by the chemo drug Carboplatin, which once again caused my bladder to become inflamed. After about 3 weeks of living in the bathroom, things slowly returned to normal. My doctor put me on a short break from chemo altogether, and from Carboplatin forever. According to him, he has never had a patient with this problem before! How special I felt! He advised me there are other forms of platinum that could be used. He recommended an older platinum drug that they used to use, CISplatin, which he remarked, caused more nausea, “but with the new anti-nausea drugs it shouldn’t be a problem.”

So two weeks ago (Tuesday) I received that drug (which takes twice as long to infuse), and my other two tumor suppressors. I was there from 11:30 to 5:30! The good news is my bladder tolerated it just fine. The bad news? I was pretty strung out with nausea and fatigue from Thursday to Monday. Not so bad that I had to throw up or anything, but bad enough that it kept me awake one night. So, a new challenge to face, but I’m feeling fine now, which makes you forget the bad. My tumor marker was at 41 that day which is just slightly high so my body is hanging in there despite missing alot of chemo treatments.

I’ve been thinking and studying about miracles, and pondering why couldn’t I be healed like the faith-filled woman with the blood issue that just touched Jesus’ garment and was instantly healed. As with most things in life, there is no easy answer. But there is alot of food for thought out there which calms my troubled heart. After reading Elder Donald Hallstrom’s conference talk ( https://www.lds.org/general-conference/2017/10/has-the-day-of-miracles-ceased?lang=eng) I had a different perspective on miracles. He asks, “Do we have the faith not to be healed from our earthly afflictions so we might be healed eternally? Is our faith focused on simply wanting to be relieved of pain and suffering, or is it firmly centered on God the Father and His holy plan and in Jesus Christ and His atonement?”

He suggests that we are “living a miracle”–that being a child of God, receiving a body in his image, the gift of a Savior and his atonement, and eternal life are all part of the miracle of this life. This got me thinking about other miracles I’ve experienced in my life. The biggest one is that angel sitting on my lap in the above picture. My granddaughter was born with several heart defects and had two open heart surgeries in the first 6 months of her life. Had she been born in an earlier generation these would have been lethal and we never would have experienced Abbey. She is a daily walking miracle and how grateful I am to know her!

I can think of at least two experiences in my life when I could have died if things had gone differently, but was “miraculously” saved. One occurred when I was home during summer break from college. We were at a family reunion at Laguna Beach, California. I went out into the surf to take a dip. I spent most of my growing up years frolicking in the waves of Huntington Beach to the north, where the beaches are wide open and the waves tamer and farther out. This little bay in Laguna had bigger waves and hit closer to shore. I tried my best to get inbetween the crashing waves but was caught flatfooted at just the wrong moment and received the full weight of a large wave which knocked me over and spun me around a few times. When I finally recovered enough to gather which way was up, and get a breath of air there was another one just like the last, breaking on top of me. I endured this bashing for another couple of rounds and knew I had to move toward shore quickly because I was running out of energy. By the time I finally made it to shore and collapsed onto my towel, I had never felt so drained in my life. I tried to tell my dad I almost died but it sounded a little over the top, even to me. But I have never forgotten that moment!

The other incident happened when me and my girlfriend were travelling by car to her hometown in Texas. We shared a ride with a couple of strangers and took turns at the wheel on the long trip. It was my turn, during the daylight, when I was driving on a lonely two-way road in the middle of nowhere and everyone else in the car was asleep. I noticed in the distance what appeared to be an 18-wheeler big rig traveling in my lane. It didn’t look like he was passing anyone, and it was far enough away that I wasn’t sure if I was imagining it or what. The closer he got, the more it seemed as if he certainly was in my lane, so I just slowly pulled off to the side of the road and stopped. Sure enough, zoom! he drove right by me in the wrong lane. This woke up the rest of the car, and we all marveled at the close call.

I think of some other high risk activities I did with strangers whom I trusted in my young adult years and also think of how bad they could have turned out. I have had 62 years of a miraculous and glorious life. God has a plan for us all. We are all going to die at some point, and it behooves us to trust in a higher power that knows the end from the beginning.

Contemplating the Whys

I’ve never been much of a “Why me?” type of thinker in my life. In fact, I most often lean in favor of Murphy’s law–that if anything can and will go wrong, it will happen to me. I must admit however, that this cancer thing took me by surprise. At the end of each year at work, we had been given the opportunity to change our insurance coverage, and lately they were offering “cancer insurance” as an option. In 2016 I gave it a fleeting thought and decided “Nah–I’m good.” The reason? I have lived a pretty healthy lifestyle the majority of my life. I never have smoked, drank alcohol, taken illicit drugs or lived dangerously in any way. Three years after my daughter was born, I started exercising, lost a bunch of weight and continued as a consistent runner for almost 25 years. The year before my diagnosis I ate more cucumbers (daily) than I had eaten in my entire 60 years previous. And we who follow social media know that cucumbers are cancer killers! So with all of that dangerous knowledge behind me I thought I was safe.

I did fit a higher-risk profile for ovarian cancer in that I was over 55 and had been a “poor reproductive performer” having had only one child. But darn it, so do a gazillion other women and they never got or get ovarian cancer! It is almost impossible to get cancer and not ask yourself what you did to cause it because we, as humans, want to attach blame to someone or something, including ourselves. We want answers. I could see right away the futility of such thinking because there are no concrete answers. My life ending sooner than most has little to do with talcum powder or risk percentages, but has everything to do with how I face it and who I become as a result. This is where my core being as a child of God and faith in a loving creator who has sent us to earth for a divine purpose comes in. To me, it is impossible to talk about the “whys” of life without it.

If you’ve searched the internet for ways of dealing with ovarian cancer, you’ve likely come across treatment plans, chemotherapy, diets, supplements and pills. This is probably the only place you’re going to find spiritual fodder to digest. So, stick with me.

My insights come from a Christian, Latter-day Saint perspective. (https://www.mormon.org) We come to earth to be tested, to learn to overcome our weaknesses and imperfections, to repent and to become more like our Savior, Jesus Christ. You can’t achieve that if your life is easy, so life was never meant to be easy or what we as humans deem to be “fair.” Cancer is never fair, especially when it involves a child. It is impossible to enumerate the number of injustices we will come across in our lifetime, but it is part and parcel of our earthly experience. Therefore, how we face such trials means everything. Will I trust in the Lord who knows everything or do I lean on my own pitiful understanding of eternity? Will I take this perceived injustice and turn it into anger and resentment or will I continue on the path of love and faith?

We are not left alone to fend for ourselves. Christ promises us that with faith he will be with us to provide strength and peace in our lives. He knows us individually. I delight in the scripture that tells us he knows even when a sparrow falls to the ground. (Matt 10:29) If he knows that, he knows my sufferings and that comforts me.

In my next blog I will look at miracles. If I’m such a believer, how come I haven’t been miraculously healed?