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 ( 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. ( 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!



Since I took my first professional job in 1981 when I moved 2 hours away from family to live by myself in a town where I knew no one, I have been a pretty independent soul. I can do most things for myself–with the possible exception of fixing the lawn sprinklers  because it requires the hand strength of a man. And moving furniture. Other than that, I’ve always had it covered.

Arriving home weakened after major surgery put me in an unfamiliar situation of having to depend on others for help. Although it was foreign to me, I knew there are times in life when the humility to depend on others for assistance is required. I didn’t have to ask my sister Mindy for help though, with her it was a given. She arrived from California just in time to accompany my brother in picking me up from the hospital. She immediately went about getting things I needed from the store, procuring a wheelchair loaner so I could get outside and go for longer distances than I could under my own power and most importantly just talking about everything I was going through. No filter needed in conversations with Mindy. The sisters from church had arranged to have dinner brought in for us for several days. I was hungry now that I was home, and some of that food we received was just over-the-top delicious. My daughter and granddaughter arrived about the time Mindy was going home and stayed for a week. There are no words to describe the gratitude I felt for all who contributed to my recovery phase. They were the actual hands working for God to answer my prayers.

Following major abdominal surgery there are bound to be changes to your body. I would soon learn what the “new normal” entailed, and how to adjust my life accordingly. This mostly involved my digestive system since I had part of my colon removed. In the first few weeks at home I would have periodic lower abdominal pain that would be intense for an hour or so and then go away. I’m not sure what caused it, but I could imagine in surgery the doctors cramming everything back into my body before suturing me up, and what that could do to me. I have no idea how that is done but this is what I pictured, and decided this was why I was having pain. Thankfully, after a couple of months this stopped. Worse, however, was the unpredictability of my bowels. I could go days without anything and then other times found myself running to the pot all day long. I was afraid to go out to eat or even to church. This complication has improved over time.

When you are discharged from the hospital following any abdominal surgery the doctor will prescribe a blood thinner (Lovenox) for you to take at home to avoid complications of blood clots that would lead to a stroke or pulmonary embolism. Much to my dismay, however, this is not a pill but an injection. The prescription is given in the form of a syringe. There is a reason I became a dietitian and not a nurse! I don’t mind getting shots but I don’t want to give them, especially to myself! This was one of the hardest things I had to do every day for about 3 weeks. I am confessing right here and now, I did not take that last shot–I just couldn’t do it any more and figured I’d be okay.  I was.

This recovery interval was also a time I was forced to confront my future and make decisions. Was I to go back to work or retire? Did I have enough money to retire? Could I work while going through chemotherapy? What were my chances of surviving? What about all of my dreams for an idyllic retirement? Was I a fighter or a “dier?” (I made up that last word).

I am not a fighter. I don’t take on causes because I never see myself as a victim. There is nothing in this life that has been withheld from me if I was willing to go after it. Bad things happen to good people, which is just part of this mortal experience. I related with a recent “Music And The Spoken Word” which described resilient people, or “survivors” as sharing certain traits: “They are optimistic, selfless, and spiritual, and they accept what can’t be changed.” (Music And The Spoken Word, September 9, 2018) So I may not be a fighter but I figured out I am more of a survivor.

I decided to retire since I was fairly well-positioned financially and didn’t want to work another 4 years only to have the cancer come back and not have any retirement. It would also allow my employer to hire someone to take my place and not leave them in limbo. I didn’t want to have to work through chemotherapy. I would stay put and not move to the Pacific Northwest where I didn’t know anyone except my daughter and her family. I had a good support system here. It felt good to make those decisions and move on.

I went to my first appointment with the oncologist two weeks after my discharge from the hospital. I was dreading this appointment. My daughter and granddaughter accompanied me which was comforting. He explained in great detail the treatment, the possible side effects and the odds of survival. He discussed drug trials I could get involved in during chemotherapy. I was initially all in with that, until right before beginning chemo treatments they said I had to have scans and blood tests, and wanted to put off the start of chemo until after that was done. Then I said forget it, I wanted to get this going.

A week or so before starting chemotherapy I was scheduled to have a “port” surgically placed in my chest which would facilitate easy access to my veins, thereby eliminating the agonizing process of trying to find a vein to poke each visit. This took the better part of a day in outpatient surgery but was well worth it. The port is just under the skin with no tube or anything hanging out. It was uncomfortable sometimes at night lying in bed on my side when it seemed to get scrunched a bit, but overall I did not feel it. With that taken care of, I was now ready to embark upon the next, and scariest phase of my treatment–chemotherapy.

The Longest 10 Days

As has been famously stated, “A hospital is no place for a sick person.” The goal for my anticipated discharge home was, of course, to recover enough from the surgery to be able to get around on my own. My doctor set another, more challenging, milestone. Due to the excision of my colon, I had to “void” before I could go home, and without the help of diet or enema so that there would be no danger of my stitches coming apart. This waiting game wore me down as the days dragged on. I was met with many challenges.

Two days following surgery it was time to have my urinary catheter removed. This meant that I would now have to get out of bed and walk to the bathroom, initially with help. Unfortunately it also signaled a new and humiliating problem that would last through my hospitalization, and for a couple of weeks beyond. When I stood up to go to the bathroom, it was as if someone left the spigot open on the dispenser, leaving gravity to do its thing. Not good. I figured the catheter had messed me up somehow, although my doctor was not very reassuring that this happened all the time, as I hoped to hear.

Normally, I consider myself to be one of the most emotionally stable people I know. This experience opened up a new world of loneliness and despair. I was in a bad place psychologically throughout my hospitalization–worry about my future life, my work, chemotherapy, and my new bladder problem among other things. I did many internet searches about ovarian cancer which didn’t help because nothing sounded hopeful. Early on, I looked for TV shows that would portray someone worse off than me.  I finally settled on “My 600-Pound Life” as the antidote for my pain. I thought this was my own warped sense of self-pity until I recently read in Susan Gubar’s book that she too, searched her mind for someone worse off that she was! I was surprised. I also found it hard to pray because I couldn’t concentrate on anything. So besides a few short pleadings to deliver me from this place, (I found it hard to pray for a BM even though I knew He would understand) I was also spiritually empty.

Food began to be a problem. I love food, and am known to devour food of any quality or quantity with dispatch. So this was a whole new world of disconnect between my brain and my stomach. Initially on liquids, I enjoyed the soups and juices they sent. I progressed quickly to a “soft” diet which is basically a regular diet with no roughage. The menu the hospital had was extensive because there was only one menu for the entire stay. As time passed, my appetite decreased until it was almost non-existent. I ordered some things that sounded good but when they arrived, they did not resemble what I thought that food should look like and couldn’t eat it.

Near the end of the week I was starting to go stir crazy. My hospital room window looked out on the massive parking complex and construction work in progress for a new parking structure. I could also see the dialysis facility across the street where I was working at the time my life was turned upside down. I missed the active and productive person I was just a week ago, and this daily scene was a constant reminder. I wanted more than anything at that time to be able to go outside and breathe the air and feel the sunshine.  I knew I couldn’t walk that far so I needed help. I asked a volunteer who came by offering books and such if they could take me in a wheelchair outside. Nope, couldn’t do that–maybe a nurse could do that they suggested. I knew darn well that nurses didn’t have the time to do such things. I asked a hospital volunteer from my church if they could take me. Nope, can’t do that. I cried that day. I am not a crier but I cried.

This brings me to some suggestions I have to anyone who is anticipating a hospital stay or is visiting family or friends in the hospital.

  1. Visitors can be a boon or a bust. First, let me be clear that I appreciated everyone who came to see me in the hospital because that meant they cared about me and I needed to feel that. I also enjoyed the text messages and calls on my cellphone, sometimes even more than actual visitors because of my appearance. My suggestion to visitors is to let the patient steer the conversation to where they want it to go. Stay in the moment–what does the patient need today, right now? Is there anything I can bring, anything I can do for you here or at your house? For the patient, don’t be shy about telling people what you need. I asked a friend from work to bring me nail clippers and she also brought me a smoothie which was the most delicious thing I had ever eaten and I will never forget her for that. Thanks Doina! My brother Kevin came to see me every day. He ended up being the one to take me outside in a wheelchair and pushed me around for probably half a mile in the heat. He also mowed my lawn for the rest of the summer. I saw a KFC commercial on TV and the chicken tenders looked appetizing to me, so I asked him if he could bring me some. He brought me that and a gigantic A & W root beer float too. It was more than I could eat but I ate a good amount of it. When he left the hospital that day (Saturday) I’m sure he wasn’t even out to his car before LIFT OFF happened in the bathroom! Glory Hallelujah–the slaves had just been freed!
  2. Take charge of managing your own care. This may seem like common sense, but it took me a few days to figure it out. When I was most vulnerable, right after the catheter came out, I was in the bathroom with a nurse who was telegraphing to me she would rather be anywhere else in the world than where she was. (Me too sister!) I was needing help and I was also dripping something from somewhere that looked like diluted blood. I couldn’t figure out where it was coming from. I soon learned that there was a drainage tube in my side (I didn’t even know it was there) that they had failed to empty that day. It was leaking all over everything. From then on, I had the technician check it and empty it every day. I made sure all supplies I needed, especially in the bathroom, were stocked and within reach. They were good employees for the most part, but they have a lot of people to tend to and can’t be expected to know everything you need. One day I wrote a special request on my menu–cottage cheese and fruit plate–that sounded good to me at the time.  They sent a nice one. I could have, and probably should have, requested to speak with a dietitian or diet tech about things I felt I could eat, but I never made that request.  As a dietitian myself, I was a bit disappointed that after a prolonged stay, and the fact I had written things in on the menu, that no one came to talk to me on their own.

Sunday was emancipation day. After the doctor came in and removed the drainage tube, I was up and dressed and ready to go. All I needed was the pharmacy to send up my prescriptions and I’d be on my way! I waited and waited and waited. Oh, one more thing to remember about hospitalizations–you will probably be waiting for something your entire stay!


After the Diagnosis

During my ER visit, I learned that the reason I couldn’t eat or sleep and I had been gaining weight while eating very little was that my abdominal cavity had been filling with fluid.  This is known as ascites.  Working in the medical profession, I knew what ascites was, but I had always associated it with end stage liver disease because that is usually when it appears.  But it can also be seen in tumor growth.  At it’s most severe, it can look like a pregnancy.  Mine didn’t look like that but I sure felt the full brunt of my organs being crowded into a tight space.  I looked forward to seeing the gynecological oncologist the following day in anticipation of ending my misery.  Actually, that day, I just wanted to be put OUT of my misery.  I didn’t want to have surgery, I didn’t want to have chemotherapy, I didn’t want to be “strong” and I didn’t want my life to be turned upside down.  But with this diagnosis it was.

I was 60 years old when diagnosed, and had the rest of my life planned out.  I had already been gleefully counting down the years to retirement–about 5 years to go at this point.  I would sell my house and move to the Pacific Northwest to be near my daughter and her family.  I would buy a condo on the seashore, enjoy early morning runs with exquisite views, watch whales breaching in the distance, kayak, volunteer in the community and take leisurely walks in the evening with the sun setting in all of it’s glorious splendor.  I would live a long and healthy life.  I had been healthy and active my entire life and there was no reason to believe this wasn’t going to continue.  But this is life, and bad stuff happens no matter what your plans are.  This is a formidable topic in and of itself and will be covered in a later blog.

A speaker at the 2018 Ovarian Cancer National Convention recommended that “the first thing a woman should do after receiving a diagnosis is nothing.”  Continue with your every day life, shop around for the doctors that fit you best and don’t make any immediate decisions, this female doctor encouraged.  Sounds like good advice if you’re shopping for a car or house, but when you are so miserable you can’t work or function at any serious level, forget it.  Gilda Radner of Saturday Night Live fame suffered through 10 months of symptoms, doctor’s appointments and misdiagnoses before finally discovering she had stage IV ovarian cancer.  By the experts own admission, ovarian cancer is most usually diagnosed in an advanced stage, and not until symptoms have become intolerable.  So, for most of us, you do what they tell you to do because there are not a lot of other options.

I prepared for my appointment with the doctor by searching “ovarian cancer” on the internet.  I remember 3 things I discovered: it is not very curable, there are better outcomes when treated by a gynecological oncologist (good!), and the chemotherapy drugs used to treat it are not as bad as some.  This gave me a false hope that I would not lose my hair, but at least it was a hope for awhile.

So the next day, Tuesday, I went to the appointment alone like I am used to doing.  I met my new doctor who I really liked.  She seemed young but aren’t they all nowadays? She was 7 months pregnant at the time, and I didn’t even notice.  She continued the charade that well, we’re not absolutely sure it’s malignant cancer and that they would first take a biopsy and then decide what to do.  Even I knew this was bunk and they were just trying to soften the blow.  She described the “debulking” surgery to me.  They would remove all of the female organs and any visible signs of cancer which may involve the diaphragm, mesentery and colon.  If the colon was involved my hospital stay would probably be longer than 4 days.  She said they had initially scheduled my surgery for the following day but the new charting program the hospital had been using was creating a problem and it might have to be postponed.  Her assistant was working feverishly at getting the problem fixed even as we spoke.  I knew about the new charting program which we had just started using at work and what a headache it was to the nurses.  It was not my favorite thing to begin with, and when I learned that it might just prolong my misery, I was getting ready to implode.  They worked on getting the problem fixed for quite a while, but ended up having to reschedule my surgery for FRIDAY! Now I am not a crying-type person, but the culmination of all I had been through the last month, the diagnosis and self pity I was going through finally hit it’s peak, and I broke down in tears.  Did I really have to suffer 3 more days with this just because of a freaking charting program? My doctor then said that the least they could do is remove the fluid in my abdomen so I could be more comfortable until the surgery.  So an appointment was made for Wednesday morning at one of our hospitals to have a paracentesis.  In this procedure a needle is inserted into the abdomen and the fluid is drained.  I knew many patients who had undergone this procedure so it was nothing new, but when it’s about to happen to you it sounds kind of scary.

The next day I reported to the appointment on time.  The wait seemed interminable. I finally got into the room and the nurse asked me bunches of questions, never taking her eyes off that damnable computer.  The computer program strikes again.  Finally, the P.A. arrived who was to perform the procedure–another woman provider, for which I was grateful.  She explained that they would use an ultrasound to find the biggest and most accessible pocket of fluid and find a target point for the needle.  I would receive some lidocaine in that area to deaden the pain.  I was nervous about this.  Before the procedure began, she and the nurse were joking and kidding around about some other employee and having a grand old time while I sat there fearful of the needles and devastated by my diagnosis.  It was like being at the grocery store and having the cashier and the bagger visiting with each other like the customer didn’t even exist.  Only worse.  And they knew my diagnosis.  That was a low point for me.  The P.A. did a wonderful job of completing the procedure in a mostly pain free manner, and successfully removed 2.5 liters of fluid from my abdomen.  On my way home I bought a hamburger to celebrate my hopefully renewed ability to eat something of substance.  I ate it, but didn’t eat much else the rest of the day.  I felt a little better but not how I hoped I would feel.

The healthcare system I both worked for and was receiving treatment through, has a great application that let’s you view your own lab results, doctor’s notes and summaries, and pathology.  When I was in the ER, I knew my lab results even before the doctor came in to discuss them.  So, the next day I looked up the pathology results of the paracentesis.  As I already knew, the pathologist determined it was “positive for malignancy.”  Nothing to do now but wait for Friday to come.


How It All Started

Although I am more than a year out from the start of what I used to call “a nightmare,” the time seems to be right to reach out to others.  When I was laying in a hospital bed following my surgery I searched the internet for anything I could find that might help me know what comes next, and what my chances were of surviving stage III ovarian cancer.  There are not a lot of personal stories out there from ovarian cancer survivors, especially ones that are encouraging.  I read comments of some women who were in various stages of recovery, but there was no follow up.  I figured they had all died.  So, for this reason I am starting this blog.  I have been through the diagnosis, the debulking surgery, 18 weeks of chemotherapy and 8 months of recovery and feel I have a handle on what you can expect during this time, although everyone’s experience will differ.  I’d love to hear how your own experience differs from mine.  As far as the chances of surviving this disease, we will make this journey together in real time, as I add to my blog.  But first, the beginning of my interrupted life.

The Diagnosis

Over the 4th of July holiday weekend in 2017, my brother and I flew to California to spend some time with our sister and brother-in-law.  As we are wont to do when we get together, we ate out a lot, and we ate a lot.  The first night we got there, we had a late dinner at “The Hat,” and I had a big pastrami burger and fries.  This was when my first symptom presented itself–acid reflux.  I just couldn’t lay down flat to sleep and tried to prop myself up with pillows. I chalked it up to the later-night eating that I wasn’t used to. We continued to eat great food throughout the four days I was there.  I loved it, but the reflux continued and another symptom popped up–constipation.  With all that eating I didn’t once have to go.  It continued when I got home even though I restarted my normal routine of drinking a fiber beverage each day.  At some point during the next two weeks I found myself unable to finish a meal.  I was just too stuffed even though I had returned to eating my regular, lower-calorie meals.  Red Flag! I love eating and usually can’t get enough! All of these things continued, and piled on top of each other. Even though I was eating much less than usual, my weight was going up.  When I started getting the chills and a low grade (99-100 degrees) fever, I searched my symptoms on the internet over and over again.  NOT ONCE did ovarian cancer come up.  Finally after about 3 weeks, I thought I would go to the store and buy a colon cleanser type drink to really flush out my system.  This was on a Saturday, planned that way so I could just sit at home and be ready to go.  It worked, but I still felt lousy.  Although I was not in pain, I was just miserable.  I stayed home from church the next day.  Sleeping was beginning to be a real challenge.  Late Sunday night, I woke up gasping for breath, and happened to have an oximeter on hand which my late husband had used.  I discovered that my oxygen level was below 90.  I finally came to the conclusion that something was seriously wrong with me, and knowing that I would not be able to go back to sleep, headed off for the ER at 2:00 AM on July 31, 2017.

When they asked me what the problem was, I said that it felt like I had a bowling ball in my belly.  Fortunately, there was only one other person in the ER and I got in right away.  They have a whiteboard in each room where they write down information about your caregivers, tests and such.  Under the diagnosis was written “rule out bad stuff.”  Blood tests were taken, I had a CT scan and then an ultrasound of my abdomen.  No waiting! A great time to go to the ER.  They figured it out pretty quickly.  I felt bad for the very nice lady ER doctor who had to tell me that it was “probably” ovarian cancer and they were setting up an appointment for me the following day with a great gynecological oncologist who would do the surgery.  Strangely enough, my initial reaction was not one of fear or crying.  Years prior, when I had a daughter at home and was called in for a repeat mammogram because of changes in the results, I completely freaked out.  The difference was that now, my daughter was grown and married, and my husband had passed away 6 months prior to my diagnosis.  There was no one depending upon me for survival.  One of my first thoughts was that after arriving in the next life, my husband petitioned the powers that be for my expedited return since he just can’t survive without a woman at his side.  Thanks a lot!

My next blog will focus on the appointment with the surgeon, my subsequent reactions and the waiting time before the surgery.  Thanks for joining me!