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.

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.

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.

Not Again!

Knowing already that the cancer had returned, I was unenthusiastic, but willing, to meet with my oncologist the end of October. He expressed his sorrow for my current plight but offered some hope for the future. When discussing the prognosis, he said that the worst case scenario would be 2 years, and the best case would be 5+ years. He likes to tell me about one of his patients who is going strong after 10 years. The next step was to get another CT scan to see exactly what the cancer was doing and then follow up with him the week after.

I had the scan and the results were online the next day. I’ll skip the details because they are hard for my family to hear, but “extensive metastatic disease” summarizes it pretty much. It was difficult to believe the extent of the growth after just 10 months off of chemo and only 6 months since my last good tumor marker. I was interested to hear from the doctor if this is what he expected with a CA-125 (tumor marker) of 81. After all, when I was first diagnosed it was 600-something!

Soon after, I met with my oncologist. Yes, he was surprised at the extent of the growth of the cancer but assured me that the prognosis was the same. The next step was to get another chemo port put in my chest. At this point, I wish I had kept the old one since I didn’t want to go in for another outpatient surgery. But I did. And the following week I started chemo treatments again. This would involve receiving one of the drugs I got in the first round, namely Carboplatin, a platinum drug that kills cancer cells. New drugs I would be receiving are Gemzar and Avastin which control the growth of tumors. I would receive the first two once every three weeks and the latter, the first and second week of the 3-week cycle. I felt improvement in my symptoms (pain and getting full quickly) soon after starting. I had two cycles of chemo before Christmas and was actually feeling almost normal. The oncologist granted me a break from chemo for two weeks so I would feel good over Christmas. I traveled to Washington to spend the holiday with family and it was a delightful pick-me-up as my daughter got me interested in bullet journaling. I came home filled with hope and a desire to be engaged in life and accomplishing my goals in whatever time frame the good Lord was willing to grant me.

I started my third cycle of chemo on December 31st and upon waking to a new year, I was hit by a ton of bricks. The horrendous bladder condition I suffered in the first round had made its glorious return–only worse. Pain, blood, leakage and having to go every 15 minutes greeted me in the new year. Not again! I really had not been too concerned about it returning since I was receiving different drugs (except for the carboplatin)  which were not to be as harsh. But return it did. I can’t explain what it is like to try and sleep and live under such circumstances. Hell rings a bell. I made an appointment with my oncologist to discuss this and make new plans. He is giving me a couple of weeks off of chemo and then will try an alternative drug to the carboplatin next time.

The good news is I have started to get some relief. The bleeding has stopped, the pain has lessened and I am able to hold it much longer, and sleep for up to 2 hours at a time. That may not sound great to some, but it is heavenly to me!

 

Life After Chemotherapy

One common misperception about chemo is that most people lose weight. Some do, I’m sure, but between the fatigue and inactivity, and my habit of eating to fend off mild nausea, I ended up gaining about 20 pounds. Prior to my diagnosis I was an avid runner for 23 years, year round, no breaks. It helped me keep my weight down, and my body got used to it. During my time on chemo I was lucky to walk the dog one mile a day. By December, when I was needing blood transfusions to keep going, I rarely walked at all. It doesn’t take much for me to gain weight.

My last day of chemo was January 2, 2018. I rang the bell loudly on my way out and received the cheers of everyone in the unit. I was scheduled for a CT scan a couple of weeks following that and an appointment with the oncologist. Everything looked good and my next appointment was made for April. He informed me that the first thing to improve would be my labs, which meant increased energy levels. The next thing to come back would be my hair, and finally, perhaps the neuropathy in my fingers and feet. We discussed my chemo port and in the spirit of optimism about my future, I was adamant about getting it taken out. He didn’t try to talk me out of it.

I thought about how best to spend my time initially in recovery before the chemicals slowly left my body. As a runner there are always times when you get injured and need to cope with that, and my philosophy was to ask myself, well, what CAN I do? That’s when I headed to the gym to exercise using body parts that weren’t hurting until the injury was healed. So, I figured I could do some things on the computer, and in the two to three months time I was sidelined, I accomplished an amazing amount of family history work in research and downloading pictures for future generations. I went through my recently departed husband’s files and shared hundreds of photographs online that he had stashed away.  So despite my physical deprivations, it turned out to be a marvelous and inspiring couple of months.

At the beginning of March I decided to start a new exercise program at the gym. I started slowly with a stationary bike and treadmill for walking and slowly increased the pace and distance. I was loving this new me and getting my mojo back, and losing weight too!

I saw my oncologist in April and my tumor markers were still in a good place. He said my hair growth was about 3 weeks behind most people at the same point. I was getting very frustrated with what I perceived as an exteremely slow growth of my hair, and this confirmed that it truly was not coming back as I had hoped.

Looking ahead to the summer and what I could do to grab hold of a good time in my life with an uncertain future, I perused the motorhome ads for a small, class B vehicle that would be just right for me and Izzy. I so enjoyed the time camping and RVing with my husband a few years ago that I wanted to recapture the magic and be able to go kayaking as well.

IMG_0797This is the motorhome I ended up purchasing in April. My first trip was to Waco, Texas to visit my sister and her husband who had just moved there from California. Although I don’t necessarily love long road trips I figured if I just drove 4-5 hours a day and camped in cities along the way I’d be fine. Most people thought I was crazy to be driving across the country by myself. When you are facing a cancer diagnosis like mine, there is not much to be afraid of. The featured picture above is me on this trip, eating at the Magnolia Table in Waco with my sister and brother-in-law. It was great to spend time with them and the motorhome performed splendidly over the hundreds of miles I drove.

Next time I’ll talk about some struggles through the rest of the summer and my follow up with the oncologist in October.

Chemo Complications

This is Izzy, my Shih Tzu, modeling what I referred to as my “cancer hat.” I bought it at the wig store. It went down farther in the back than a regular ball cap to cover more of my baldness. As I mentioned in my previous post, when I started losing my hair I just had it all shaved off which made wearing the wig easier. I much preferred wearing a hat out in public and really didn’t mind that much but more often than not, just wore a ball cap. The wig was fine, but some of my hair growth at the sides would show through at times, so I was always worried about trying to keep everything in place.  Remember that when purchasing a wig. I bought mine well before I lost my hair so I would be ready. When you lose your hair, you lose it all over your body. It made me feel like my entire body was wrapped in Saran Wrap–not a pleasant sensation. But it also meant I didn’t have to worry about shaving my legs or plucking my face for an extended period of time. Be grateful for what you can be grateful for at this time!

I always thought that losing my hair would be the worst of all the complications I could face, and it was close but not the winner. In early October 2017 after I had been on chemo for about a month, I started having frequent urges to urinate. I brought this up at my appointments and of course they figured it was a urinary tract infection (UTI) and did tests to pinpoint the suspected bacteria. Every test they did indicated there was no infection. This is one time you wish there WAS an infection because there would at least be a treatment and explanation for it! Not only did I constantly have the urge to go, I also lost the ability, again, to keep it from leaking out. I had some pain when going, but it felt more like pressure in my bladder. It was getting worse and worse. I was having the urge to go about every 30 minutes. Try to sleep with that constant wake up call! They sent me to a urologist and I saw the nurse practitioner who, without touching or examining me in any way diagnosed “overactive bladder.” You gotta be kidding me. I didn’t believe for a minute that is what it was because you don’t go from normal to ridiculous, overnight. He gave me some samples of a medication that so completely dried out my mouth that I couldn’t function. It didn’t work either. I searched the internet for some insight into what was going on, and nothing seem to fit my symptoms, although I eventually convinced myself I had a prolapsed bladder. I didn’t. So anyway, I suffered tremendously for several months. If this was how I had to live, I didn’t want to live. Mentally, it took it’s biggest toll on me, far more than even the cancer diagnosis. I couldn’t go anywhere without searching for a bathroom constantly. My oncologist just couldn’t believe it was caused by the chemo because it was such a rare thing to happen.

I was so angry about the trip to the urologist that I didn’t want to go back, but my tortured existence finally got to me and I called for another appointment–but not with the caretaker I had before! It would be another 8 weeks before I could get in. My next appointment (with a different nurse practitioner) went much better, and she got me in quickly for a real examination with the female doctor I requested. She went into my bladder with a camera (pretty much pain free thankfully) and did see an area of inflammation. She said it didn’t look like cancer but wanted to do an outpatient procedure to go in and scrape the area for a biopsy. This happened in January 2018. The biopsy showed no cancer, just inflammation. It was about this time that my symptoms seemed to be easing up a bit anyway. She had me taking samples of a newer medication for active bladder, Myrbetriq, which did not have the drying side effects of the first medication. It didn’t bother me, but it didn’t change my symptoms when I started taking it and when I stopped taking it.  So, overall, I just got better with time. Eventually, the oncologist had to admit that it was probably due to the chemotherapy given the timing of it. Again, this is very rare, and not to be expected with Taxol and Carboplatin, but you never know what can happen.

It wasn’t until the last month or two of chemo that I started experiencing the promised neuropathy in my feet and fingers. I described my symptoms as “hot fingers” because that is what it felt like. They were hot at the tips, losing feeling, and looked as if someone bashed them with a 2×4 with dried blood underneath the nails. I took a picture of them to send to somebody but deleted them off my phone. Too bad. A friend commented on how horrible they looked so to spare people the sight, I painted them over with some tan fingernail polish–something I don’t usually use. I recovered most of the feeling in my fingertips but not completely and the ugliness soon went away. My feet went numb in the last month of treatment. It is not painful, just annoying, and this has not gone away.

Next up, life after chemotherapy…