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!