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!

Next Step: Drug Trials

My last chemotherapy treatment was March 26. I again received the old platinum drug, Cisplatin plus my other two tumor shrinkers. I was to return a week later for one drug, but was still feeling sick from the week before, so I cancelled. I decided during that miserable week that I would rather die than be that sick for that long again, and so I was not going to take anymore platinum drugs. My symptoms included nausea for more than a week, exhaustion, headache, acid reflux, decreased appetite and increased hiccups.

By last week I felt well enough to take a trip to Texas (this time by plane) to visit my sister again. The above picture is of the bluebonnets that bloom in the spring in Texas. They were growing all over by the side of the roads and in fields, along with Red Indian Paintbrush flowers. Spring has a way of making a person feel new and hopeful again, and that it did. Plus seeing my sister and brother-in-law brought much joy and renewal to my heart. The day I returned home I was scheduled for a CT scan to see what, if any, difference my six cycles of chemotherapy made to my burgeoning metastatic cancer. CT scans have a way of bringing you back to the untoward reality of life no matter what season of the year it is.

If you’ve never had a CT scan, let me describe the process to you. The technician brings out a jug of “lemonade”, only it’s not lemonade, it is a yucky-tasting solution that you are instructed to drink every 20 minutes for about an hour. This time it was red, and the technician informed me it was raspberry lemonade and tasted much better. That turned out not to be true, as I found myself involuntarily shuddering with each gulp I took. I was then led into a dressing room and instructed to put on a gown and a pair of no metal scrubs-type bottoms. Why don’t they ever tell you which way the gown goes on, and if the ties go in the back how on earth you are to tie them by yourself?

Next stop is the freezing scan room where they must access a vein. This time I have my chemo port so they don’t have to poke me numerous times in an attempt to find a working vein. Or so I thought! The nurse was anxious to tell me how experienced she was with accessing ports but all it took was one painful jab which missed the mark to know she was talking like that to convince herself. She tried again and missed again. So now we must move on to finding a vein in my arm. I told her last time they needed to use the ultrasound machine to identify a useable vein, and she assured me she would do that. This attempt showed more of where her expertise lay, as it was a perfect, no pain stick of success!

Now they are ready to do the scan. They send the dye, or “contrast” through the IV which you can actually feel go throughout your body because it feels warm. I had two views done–the chest area, and the abdomen. The machine tells you when to hold your breath and be still, then when to exhale. Your arms are placed over your head and the platter you are on is moved through the machine. Maybe everybody else is used to that position, but I’m not, and it is painful to me to be in that position for long.

Although I had never had post-scan diarrhea before, this time it hit me hard about the time I got home and continued for two days. So, yes, the joys of CT scans are just innumerable!

The reports were actually available on line in just a couple of hours. The chest report indicated “numerous low-attenuation lesions in liver and abdominal peritoneum with significant increase compared to previous scan” done in October 2018. Well, that didn’t sound too good. The abdominal scan measured specific tumors identified on the previous scan, and all of them were smaller than they were before. So I was a little bit confused as one seemed to indicate improvement, and the other sounded worse.

I met with my oncologist yesterday, and was anxious to hear what he had to say about this contradiction. Well, the reports, he pointed out, were done by two different doctors. Okay but why are they seeing different things? He said he trusted the abdominal report more because of the measurements, and it generally gives a more accurate look at the tumors. At any rate, he was not thrilled with the results after 6 rounds of chemo. I think he called them “disappointing.” But, of course, he has more tricks up his sleeve. The next step is to look at some clinical trials they are doing right now with drugs to treat ovarian cancer. The first one we talked about was only for patients that have a specific protein in their tumors. That involves getting a biopsy of a tumor and testing it. And that is before you even begin to think about what is involved in the actual trial. Sigh. I do know one thing about the trial–it requires frequent scans. Double sigh and eye roll.