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.

Another Christmas

It’s Christmas again, my sixty-third to be exact. It’s fun to look back at the many Christmases I enjoyed in my life as a child, teen, as a young mother, and now as a grandmother. This picture is me, probably about 1959 in Southern California. The tree looks pretty sad compared to the trees of today, but I’m sure I thought it was the most beautiful thing I’d ever seen. Perspective is everything when it comes to the holidays. Christmas itself has taken on a new meaning for me now, as I know that my future is one of limited Christmases. How many, I don’t know, but that makes each one I do make it to, something to celebrate.

I know last year I was wondering if I’d be here this Christmas, and here I am, no worse for wear. I did hire someone to mow my lawn over the summer because I’m just not up to that any more. I have some painful, strange days occasionally where I’m sure things are spreading and getting worse, and then it just disappears. I had a day like that a couple of weeks ago and so approached my scheduled CT scan this month with some trepidation. I still despise having to go through the whole process of drinking that potion, and waiting, waiting, waiting to go in. They had an unexpected delay yesterday, so I had to sit there for two hours waiting to go in for the test. The results were posted online in a short amount of time (that part I like!) and it appears that there is some small tumor growth, but like last time, mostly stable from the last scan 3-1/2 months ago!

I am still taking the canine dewormer (see https://www.mycancerstory.rocks/) as described in a previous blog of mine. I have also been on Avastin every three weeks as a maintenance chemo drug. I came across another suggestion (https://www.holisticprimarycare.net/latest-articles/2041-delta-tocotrienol-improves-survival-in-advanced-ovarian-cancer.html) which involves taking delta-tocotrienol, a different form of vitamin E, in conjunction with Avastin to slow the progression of ovarian cancer. It took me a while to find the right kind and dose on the internet, and it is a bit pricey, but I have been taking 1 or 2 of those every day as well. Here is the link for what I bought: https://www.dailybenefit.com/products/annatto-e-300mg-delta-gamma-tocotrienols

You can look for cheaper but I don’t think you’ll find it. These are 300 mg and there are 60 softgels in a bottle, and if you get set up for regular shipments they are even cheaper. Anyway, I am going to show this article to my oncologist at my next appointment and see what he thinks. This is an appointment where we will figure out the next step and I am going to lobby to continue with the Avastin and the other things I am taking.

May your days be merry and bright, and may we observe Christmas not just as a season of “Greetings” or “Happy Holidays” but as a celebration of the birth of the Son of God and a time to remember His teachings and the eternal significance of his atonement. Love to all…

 

 

The Worth of a Soul

In September, after the last of the peaches had fallen to the ground, I got a crazy idea. Since I had been feeling relatively perky for someone living with cancer, I felt the time was right to cross off a “bucket list” item I have wanted to do for some time. Each year around 9/11 I watch a lot of the shows on TV looking back on that day, and this year I included a wonderfully-written book, Rise And Fall–The Story of 9/11 by Mitchel Zuckoff, in my remembrance of that day. All combined, and also never having been to New York City, I decided to plan a short trip to see the 9/11 Memorial and Museum and, of course, experience the “city that never sleeps”–given my insomnia, me and the city have something in common!

I am in between CT scans right now, the next coming probably after Christmas. My tumor marker (CA-125) which supposedly indicates tumor growth, has been slowly rising each time. I’m still going every 3 weeks for my Avastin infusion as a maintenance drug, and that’s when they take my blood samples. The tumor marker is up to 128 (<35 is the norm) which means it rises about 15 to 20 points per month. It’s not a definitive indication of what is actually happening in my body, but it is a clue. I am still taking the Fenben dog dewormer as I mentioned in previous blog posts, but it is getting harder to acquire, as my usual source was out of stock this time. I found and bought an alternative, but I can see it is being discovered by a lot more people and who knows what the drug maker or the government will do once they discover humans are taking it.

I planned my trip for early November and asked a long-time friend if she would accompany me and she agreed. That was last week and as you can see in the featured picture of me in front of the memorial waterfall pool and the new “Freedom Tower”, we made it! Physically, the trip was a bit of a challenge as there was a lot of walking involved and my new life with cancer has been a sedentary one. We spent half a day in the museum which was just a phenomenal experience. It is all underground in the exact location of where the two towers once stood. Inside the crumbled foundation of each tower, they have constructed a faux-building, one of which contains artifacts, pictures and stories from pre-9/11, to an accounting of the day in each location of attack, and the aftermath.

The other building, which I want to especially highlight today, was a tribute to each deceased victim of 9/11. Pictures of each one of them cover the walls. In the middle is a room with a lighted, see-through floor showing the rubble underneath and benches along the walls. As you sit there, you hear and see the name of each victim read slowly, some including a memory shared from a family member about that person. Outside the room is a display spotlighting some of their hobbies and interests with items donated from family. Overall what impressed me with this building and the names outside, carved in metal around the pools, was the focus on the individual. They are not treated like a group of fatalities, but as distinct, separate human beings who were loved and cherished by family and friends and had their own specific talents, abilities and personalities. They don’t allow pictures to be taken in this part of the museum. When we were outside, my friend momentarily put her purse down on the name plates surrounding the pool, and was immediately told to take it off of there. The names and the people are treated with the utmost respect and reverence. A white rose is placed in their name on their birthday and a red rose for their wedding anniversary.

This year, about 14,000 women will die from ovarian cancer; 607,000 people from all types of cancer. We are more than a statistic. I recently joined a Facebook group of cancer victims who are trying Fenben to treat their cancer. Each tells their story when they join the group, and they are all different, but each is battling this pernicious disease the best they know how. It has helped me see who those ugly numbers represent on a personal level and I am better for the experience.

 

 

 

Peachy Keen

I’m feeling pretty peachy today for a couple of reasons. First, our peach tree. My husband had tried for years to grow a fruit tree in the back yard. Every one we planted died as there apparently is not enough sunlight in that area to support a tree. So about 15 years ago he insisted we plant a peach tree in the front yard. I was against the idea because I thought the peaches would just get stolen (they haven’t been), but went along with the idea anyway. This little dwarf peach tree has done very well–so well in fact, that it is my main source of anxiety from spring to late summer each year trying to control the amount of peaches on it!

This year has been the peachiest ever. I started thinning the peaches as soon as they began to grow in early spring. Every time I went out to look at the tree this season, there were more new peaches growing and taking up every inch of the branches. I probably thinned the tree half a dozen times this year and must have removed 1,000 potential peaches in the process. They ripen late August to early September so the tree is now in full ripening mode. So far I have had 3 broken branches and have propped up two other branches to keep them from breaking. What does a single person do with a gazillion peaches? I give away a ton to the neighbors, but that still leaves me with a heck of a lot of peaches to deal with. This is when you start wishing people would steal your peaches. Normally I make jam, peach cobblers, or clean and cut them up for freezing to use in smoothies. Peaches are a high maintenance fruit because they need to be cleaned, peeled and sliced. With my illness, I just didn’t know if I would be up to it this year. Which brings me to the next reason I’m feeling peachy.

Last week I had my first CT scan since I started experimenting with the dewormer drug in early June. That gave me a good 3 months to gauge whether it was working or not. The results showed my tumors were stable! Two small tumors showed some minor growth but for the most part NO–NEW–GROWTH! This was a new experience for me. I saw my oncologist yesterday and he thought this was good news as well. He said the goal of our treatment right now is to stop the growth and that had been accomplished. He made no comment on whether he thought it was the dewormer and I didn’t push it. So we will continue with the same, including Avastin every 3 weeks, until the end of the year.

Physically I’ve had some ups and downs through the summer. About mid-July I went out in the morning to thin the peach tree, and got on a ladder to reach some of the higher ones. Later that day I started feeling kind of sick–my stomach hurt, my back was in a lot of pain and I felt completely physically exhausted. I couldn’t sleep that night I was in so much pain. I felt so rotten I thought, “This is it, the cancer is taking over my body and I’ll never feel good again.” Well, wrong. I don’t know what happened but I could have had the flu or something even though I never had a temperature. That was my low point.

Back to the peachy part of this post. A couple of weeks ago I attended 4 days of BYU Education Week which required driving 45 minutes every morning, walking in the heat to the classes, (until about 2:45) then driving home 45 minutes. I was so happy I did it, and did it well.  I’m feeling so good today that I made 4 peach cobblers, froze some peaches and look forward to making peach jam tomorrow! Life certainly is peachy right now and I’m going to enjoy it while it lasts!

Experimenting

As I approach the 2 year anniversary of my ovarian cancer diagnosis and surgery, I find myself experiencing mixed emotions. Vexation, of course, over the loss of my once good health and stamina, and gratitude for the extra time I have been given to learn and grow and accomplish many good things. Two weeks ago a lovely, gifted woman I know who was 39 years old and expecting the imminent birth of her fourth child suffered an amniotic fluid embolism. As I understand it, it is a rare complication of pregnancy in which the amniotic fluid somehow gets into the mother’s bloodstream. Both she and the baby passed away quickly. She left behind three small children and a grieving husband and family. In the grand scheme of life, that ranks up there among the most tragic heartbreaks one can endure. My disease at my age, and the time I’ve been granted to wrap things up, does not compare. Perspective is a great gift.

I left off my last post indicating that I was starting a new, unconventional drug that I had read about online. Here is the link to the post that got me started on it: https://www.mycancerstory.rocks

To summarize, this man Joe Tippins, about my age, was diagnosed with lung cancer in 2016. He did the traditional chemo and radiation treatments, but ultimately the cancer metastasized to other parts of his body and he was given 3 months to live. He was told by a veterinarian to try something called Fenbendazole, which is traditionally used to treat canine worms (this is why my dog Izzy takes top billing this post). Anyway, he started taking this drug along with a few other supplements and has been free from cancer ever since. He doesn’t sell it, so he is not making money off of this, just trying to share what happened to him in hopes that it might help others. I became interested in trying it because it has been tested on humans for other things, so it is safe, it is available online without a prescription and doesn’t cost that much. So, with all of that in mind, what have I got to lose?

I started taking it on June 3. I had an appointment with my oncologist shortly after this. We had discussed my current status and the fact that I had been rejected for the one study. He disagreed with my assessment that I had few options left, showing me a long printout of all of the drug trials for ovarian cancer I could get involved in, but thought we should just continue with the maintenance drug Avastin for now. My last tumor marker was in the 40s, so it wasn’t too bad. I saw this as my chance to tell him about the drug I was starting to take and see what he thought. He immediately did a search on his computer regarding the drug (he did not read the above link, which as a member of the medical profession I understood, and approved!) and found an article in a medical journal describing the anti-cancer mechanisms of the drug. He said it worked in the same way some of the traditional chemo drugs work. He was all for me trying it and said he had never heard of it before! Wow, a doctor with an open mind! He is always good about making a plan that we both agree on. The plan was to continue Avastin, and try the “fenben” through August, then have a new CT scan done. I asked if he would test my tumor marker every time I came in (every 3 weeks) so I could see if anything was happening and he agreed.

So it has been about 7 weeks now since I started the drug, but unfortunately I’m not seeing great results. My tumor marker on 6/11 was 53, 7/2 was 67 and the most recent on 7/23 was 79. It could be too early yet as they say it will take 10-20 weeks sometimes to see results. I think the original Joe saw results pretty quickly however. So it’s discouraging but I will continue on it for a while longer. My next scan will be the end of August.

Throughout this time I have been tracking my cancer symptoms in my bullet journal so I can get a better idea visually of what is happening physically to me. The two biggest symptoms are fatigue (although this could be due to the Avastin) and a stabbing pain I get in my side at times. Neither have changed much, but have probably gotten a little worse over the past 2 months. At any rate, I enjoy the things I’m able to do such as reading and doing family history work. I will report back again after my scan and meeting with the oncologist. Hope you are having a great summer!

Dwindling Options

Since I hadn’t had chemotherapy for several weeks (except for the maintenance drug Avastin) I was feeling pretty good and decided if I was going to do anything daring, this gap in time was the right time to go for it. So with much trepidation, I decided to take another road trip (just me and my dog Izzy) in my small motorhome and see some things I’ve never had the opportunity to see, but have always wanted to see. My fears stemmed mostly from an increased amount of pain in my bladder and the possibility that my bladder could implode again so far away from home. Well, to quash any suspense in that regard, I made the trip and I didn’t have any physical problems.

I drove across Wyoming on day 1, spending a snowy, freezing night in Cheyenne. By then I was beating myself up for going on this trip since I don’t like the snow, especially driving in it. The plan for day 2 was to drive across Nebraska. When I awoke early that morning and took the dog out to do her duty, it was freezing cold, snowing a little and the motorhome was essentially frozen with snow and a thin layer of ice covering the non-snowed over areas. Again, I was upset with myself but was determined to get out of Wyoming. It was white-knuckle driving for about an hour before the roads then cleared, along with the skies and the rest of the trip was uneventful weather-wise. I stayed in Omaha, Nebraska and spent the next day exploring what we in the Church of Jesus Christ of Latter-day Saints call “Winter Quarters.” This is where early church pioneers spent the winter when they were crossing the plains too late in the season to make it to Salt Lake City. I have an infant (distant) cousin buried in the cemetery there, next to the visitor’s center which I enjoyed exploring. The next day I drove to DeSmet, South Dakota where Laura Ingalls Wilder’s family lived for many years. Two of her “Little House” books took place in this town. I took tours of the schoolhouse, the surveyor’s house (which they lived in one winter) and “Pa”s house in town. I loved being in these actual places, and since coming home have read four of her books and a couple of biographies about her. How I wished I’d read them just BEFORE going on the trip! Anyway, I finished up my week-long adventure seeing the Badlands and Mount Rushmore on the other end of South Dakota. Then the last day I experienced Devil’s Tower, Wyoming (see above picture) close up. I loved all of it except for the snow and was glad I took the opportunity to see these amazing sites!

When I got back from my trip I made an appointment to meet with the people doing the drug study and to sign the consent forms. It turns out I did not have to do a biopsy after all; they could just test the tissue that had been saved from my original debulking surgery. That tissue would be studied to determine if I had high levels of a specific protein that the trial drug targets. I asked the girl what percentage of people tested were able to join the study. She said “So far, 100%.” Now I don’t know how many people that actually includes–I should have asked this question but I did not. Knowing that things had not exactly gone “normally” for me up to this point, I said, “Well, the way things have gone for me so far, it wouldn’t surprise me to be the one exception.” She told me they would be getting back to me once they find out the results. This morning I received the call telling me that I did NOT qualify to participate in the study. My premonition was right on. This tells me that yes, my tumors have not been the standard ovarian cancer tumors. My question is why don’t they test that right off the bat, and have treatments appropriate for what you have got? Maybe they just are not that sophisticated when it comes to ovarian cancer yet. It’s not a high priority cancer like breast cancer.

It just so happens that today I ran into a friend down the street and we talked for a while. She walked me back home and then left, and within two minutes was back with a son of hers who just came by. He told me about an alternative treatment and told me to go to a certain web site to read about it. This of course was not the first time someone has told me about an alternative cancer treatment. And I have read all that have been suggested. None sounded very promising, and/or they were expensive or just not anything I wanted to try. I also feel like most were “desperate” measures, and I just don’t feel desperate about my impending death. So anyway, I went and read about this one. It just seemed like there was a higher probability of success with little to invest and no side effects. So what have I got to lose? I have an appointment with my oncologist in a couple of weeks and I will see what options he’s got left for me, but I thought I would try this one. I’m keeping it secret for now, but will let you know at a later date how it works out for me.