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.

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?

 

 

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…

Starting Chemotherapy

As with anything new, and especially dreaded, we all have our own preconceived perceptions about what an experience is going to be like. If you’ve never been or accompanied anyone to a chemotherapy unit, it’s likely you have a negative picture in your mind. I know I did. I pictured very ill people being tortured by this poison going into their system, and a lot of throwing up. Well, nothing could be further from the truth. Never once in 18 weeks did I ever see anyone throw up. Although in the picture I chose above, they do seem to be just a little too happy and put together for the chemo encounter.

Before picking the day of the week to start, my oncologist informed me that my “best days” would be five days after receiving the chemo. Since church was the only place I had to be every week, I chose Tuesday as my treatment day. The first time I walked into the unit was Tuesday, September 5, 2017, the day after Labor Day. It was quite crowded because all the Monday patients were there that had had a holiday the day before. I don’t care for crowds, so that made it a little more stressful. I was told to go sit anywhere but I think there was only one seat available. I wondered how the nurses would know who I was because I was new. Of course they have got these things figured out already as they have been doing it forever. So they knew who I was and I was warmly greeted eventually by a friendly and caring RN. Normally, the first thing they do is connect your chest port (as I mentioned in my last post) to an access tube. Although it is under the skin, and the skin must be punctured to connect the two parts, it usually requires a nanosecond of pain to endure before you are on your way. But, that is if everything goes as planned. As has seemed to be my lot in life lately, the nurse pushed through the access and nothing happened. “Well that’s strange–that never happens!” she exclaimed. She continued her pushing and apologizing for at least a half a dozen tries and by then it was quite painful. Add on top of that the anxiety I was feeling to begin with, the tears began to fall! I was embarrassed but my mind and body had reached the end point. She eventually got a connection after giving me a little rest. After that, blood is drawn from the tube for lab tests and you wait for the results. If your red blood cells and platelets are in good shape you are cleared to get your meds.

I was set to receive two drugs to kill cancer cells or keep them from reproducing: Taxol and Carboplatin. Taxol I would receive weekly and the latter, every three weeks.  My doctor called it six, three week cycles, or 18 weeks total. Taxol can cause some bad allergic-type reactions, so prior to getting the drug I would receive an infusion of diphenhydramine which is like Benadryl in order to avoid any trouble. After that, I received an anti-nausea drug infusion which worked great not only the day of treatment but for several days after. By this point I am getting a bit sleepy because of the Benadryl. I’ve now been there for an hour to hour and a half and have yet to receive the drugs I came to get! Those are the final drugs for the day and, in total, that can take another hour to an hour and a half to receive. I feel nothing while receiving them–they might as well have been saline. As I left the unit I thought that wasn’t too bad even though I was still sleepy from the Benadryl. I went home and took a nap.

Taxol is the drug that causes hair loss. It is not gradual. One day you have hair and you can pull on it and nothing happens; the next day you pull on it and it all comes out. It took 3 weeks and 2 days before that day occurred. I had already been to a fine wig shop in town and was ready for this day, if anyone is ever ready to have their hair fall out. Rather than try and hold on to it (and look rather sick and pathetic in the process–my own interpretation) I chose to just have my head shaved and get it over with. A good friend came over to do the deed–I was grateful I didn’t have to go out and have it done. I always found it easier to jump into a pool rather than enter inch by inch. The wig was okay but I looked different because there is no way to replicate my real hair. I wore it to church but I always felt a little phony, that’s just me. Out in the world I wore my self-described “cancer hat” which I bought at the wig shop (longer in the back) or a regular ball cap and felt much more comfortable about being seen.

My next blog post will be about complications I experienced, both expected and unexpected!