A Day In the Chemo Life

I have one chemotherapy treatment left and I thought it would be good for me to recount what a day and week of chemo have been like for me. Chemotherapy affects everyone differently and, of course, not everyone is on the same course of drugs, doses, or frequency. Hence, my story is just my story, and does not reflect what it is like for others. Still, if I had read a complete account beforehand I would have had a better idea of what to expect. Maybe.

The basic schedule of my chemotherapy regime was eighteen weeks long. Six rounds. Each round began with carbo-platin and taxol given on Day 1, a Thursday. This first Thursday of the round involves more extensive blood tests and an office visit with my doctor or nurse practioner. The following two Thursdays, days 8 and 15, were days I only received the taxol.  I felt good on Thursdays and Fridays. I would go to work for half a day on Fridays.  Saturdays and Sundays are my low days that I need more rest on and don’t have the energy to focus on things. Mondays I come out of the chemo fog, so I put in a half day of work. Tuesdays and Wednesdays have been good days, so I often put in full days. Every Thursday for the past five months I have spent the mornings and early afternoons at the Esther Marie Hatton Cancer Center at St. Elizabeth receiving my treatments.

Thursdays are days I’ve gotten to sleep in a bit. Usually my appointment would be at 8:30 am (sometimes as early as 8:00 am or late as 9:30 am . I get up at 7:00 am to give myself my blood thinner shot. I get ready, making sure to choose a top that makes it easy for the nurse to access my port. (The port-a-cell was inserted in early June for easy access for blood draws and administering medicines and chemotherapy.) I also put a bit of lidocaine on the port and cover it with plastic wrap so that it has an hour to work its magic. I use this to avoid a bit of annoying pain. When the nurse attaches my port to the drip line there is a decent pinch. The lidocaine masks that. It’s not a big deal, and I have forgotten to apply it once or twice so I endured the pain. But I figure any pain that doesn’t have to be felt shouldn’t. It helps save my strength for bearing other things. Plus, it has helped me to not fear that approach the nurse has when she comes at me with that contraption with the stick and tubes because I know it won’t hurt me.

Mom and Dad have gone with me to almost all of my treatments (they have selflessly given me their Thursdays and their time, home, and love throughout the past five months. They are my heroes.) We pile in Dad’s car with my bag of supplies. Fortunately for me, the cancer care center is about fifteen minutes from their house and in an area very familiar to all three of us. Some of the patients there have to travel a much longer distance to a place that doesn’t feel like home.

A warm welcome is always waiting for me at the front desk when I check in. After 18 weeks, they know me on sight.

Gina, the receptionist at the front desk, checks me in as soon as she sees. Mom and Dad scope out their seats in the waiting room by the coffee machine and the cookies. I like the soft chocolate chip cookies, so I take a few for the back room. Either Mom or Dad will go back with me, as there is space for only one person to accompany me to the actual treatment room.

My nurse for the day comes to get me, asking the now frequent question of my name and birthdate. The treatment room has actually two areas, a kind of figure eight with the nurses’ station and desk in the middle. One side is larger than the other. The outer edge of the room is rimmed with reasonably comfortable lounge chairs for the cancer patients. I usually choose one away from the television on the wall. While I get myself organized and Mom or Dad finds a chair next to mine, my nurse gathers her supplies to get me hooked up.

The treatment chairs at the cancer care center.

There is a tray that I pull over my lap for my supplies and later my meal. It might look a bit like a little old lady’s bingo table with all of her trinkets and lucky charms, but really it’s all my artillery. The chair is my battle station, and I need to keep my head in the right space. So I pull out of my bag several items. My Comfort Cross. My cell phone. A Pooh Bear. Coloring pens or pencils. An inspirational picture to color, often with scripture on it. A Sprite Zero, cup of ice, and two cranberry juice cups to make my “spritzer”. In my lap is a prayer blanket my cousin Jenni gave me. These items keep me from thinking dark thoughts, combining comfort from my faith, childhood, creative side, and my network of people who love me.

My nurse cleans up the port site, which is located above my right breast for easy and comfortable access, and prepares to hook me up. I don’t know the technical term for the stick and the line that she attaches to me. She feels around for the solid lump that is just below the surface of my skin. It’s about the size of a quarter and 75 cents thick. When she gets a good sense of where the placement is she counts to three and sticks it in. I don’t feel anything but pressure. A protective bandage goes over the area. First she pulls out the preservative liquid (I forget the name) that they put in at the end of my last one. Next she draws blood out. It’s weird to see my blood coming out of my chest into tubes but not feel it—I feel disconnected and can only briefly ponder what is happening. Then it rushes upon me and I have to look away from the connection and the flow.

Here I am with my line attached to my port. Trust me, it doesn't hurt.

After the blood draw is done (anywhere from one to four tubes depending on the week), she flushes out the line so that it is ready to receive next. I like this step. It puzzles my nurses, but no one else has my memories. The sense of smell triggers strong memories. When she flushes out the line she uses a sodium chloride solution that we patients can either taste or smell. I smell it, and happy memories of playing in the chemistry labs at Thomas More College rush upon me. In an instant I am spinning on the stools with Jeff or sporting Mom or Dad’s lab coat while we wash beakers and flasks. Happy family memories. It’s one of the best parts of my chemo day and the nurses think I’m nuts because no one else likes it.

A few of my coloring projects that have kept me focused on the right things.

Now we wait for the blood results. This can take anywhere from a half hour to two hours, depending on how busy the lab is. Last week’s took two hours because they have a new system in place with more checks. It’s during this time that Mom and I work on a daily word puzzle we found we like to do together. If Dad is with me he reads and I color. I really like the prayerful, therapeutic nature of coloring. It’s peaceful, creative, productive, and cheerful. It’s time for me to just be with Jesus while in the cancer center. And He is definitely there. Sometimes I forget He is with me, and I see Him sitting with someone else who has a situation much more dire than mine. He is there lending strength and reassurance in the family and friends sitting next to them and in the nurses who offer their wisdom and soothing touch.

Once the blood tests reveal that my counts are good and I am cleared for treatment, the nurse puts in the orders with the pharmacy. My pre-meds are delivered. These are anti-nausea medicines that help me to handle the chemo. Thankfully they have done their job well. Zofran and decadron take the first twenty minutes to drip through my port. Then the next twenty minutes are busy. Pepsid and Benadryl are the last pre-meds. By this time with all these new fluids, I have needed to make at least one trip to the restroom. I unplug the pump machine from the wall and take the IV pole with me.  It’s on a battery pack, so it continues to do it’s job. I try to go the closest restroom as Benadryl makes me very loopy and sleepy. I really shouldn’t have a license to drive the IV pole! Before Benadryl has finished dripping into me, lunch comes. I get a hot meal each time I am there. The fried chicken, mashed potatoes, mac n cheese and green beans hit the spot when chemo is up ahead.

I can usually tell when the Pepsid-Benadryl mix is done, as my eyelids are very heavy. Sometimes I miss when my nurse administers the chemo because I am in dreamland. But usually I am aware of her showing up in her plastic protective gown and mask. She protects herself from exposure to the chemo, hangs a bag labeled with the cautionary icons for chemotherapy, and hooks it up to my line. She sets the pump for one hour titration, and I drift off. An hour later I hear the loud beeping from the pump that signals we are done. Aside from still feeling sleepy I don’t feel any different.

The nurses' station in the cancer care center with a few mobile computers. They have individual computers on carts that they pull up to the patients to do the chart work. It is a busy but very organized place.

My nurse turns off the beeping and disconnects the line from my port. She disposes of the whole contraption of tubing in the sharps bio-hazard container. She prints out a report for me that summarizes the medicines and procedures done that day and the upcoming appointments. I’ve been tracking my numbers, so I like to take the report with me. Plus, it helps me to keep track of my appointments.

When I get home I lay low for the rest of the day. I will usually sleep for another hour or two. Once the Benadryl wears off, I feel good. I find it difficult to sleep on Thursday nights because one of the pre-meds is a steroid that keeps me up. For this reason I usually only work a half day on Fridays. I feel fine, but I need to catch up on my sleep. I’ve never really felt sick to the point that I might vomit. There were a few times that I felt nauseated, but I took some of the anti-nausea medicine and it backed off. Generally, I just don’t have the energy. But that will come back, as will my hair, eyebrows, and eyelashes.

My last treatment is scheduled for this Thursday. I’m excited. It’s like the finish line of a marathon is in my sight. Crossing it doesn’t mean running is over. It just means that this leg, this race is complete. There is more to do—CAT scan and doctor’s appointment about the follow up that I will have to do for the rest of my life, both of which are the following week. I am by no means done dealing with this topic of my cancer, but I should be done with the chemo.

Hiccups, Bumps and Bruises

“We have some unexpected developments, huh? You doing okay?” he asked.

I instinctively smiled; it’s not hard to smile at my straight-shooting, young doctor with a sparkle of the boy still left in him. In any other career he probably would not have already lost so much of that fun-loving nature, but I am sure that being a cancer doctor takes a toll and matures a man beyond his years.

It was unusual for Dr. Pavelka, my remarkable gynecological oncologist, to be in the cancer treatment area Thursday, August 24. I don’t think he popped in on “our” side of things just to see me, but he did have reason to stop and reassure me. I greeted him, hoping to get some answers from him. Like most doctors who specialize in certain cancers, I imagine he has way more patients than he should or wants. That alone accounts for him having two wonderful nurse practioners who help handle his appointments. I don’t get to see him for all of my doctors’ appointments, which happen on the first of three cycles in each round of chemo. I see him about every third one of those. (That means six scheduled doctors’ appointments, but only two or three with him. They do work well as a team- the whole place does.)

“We have hiccups,” I replied, with a smile. 

His eyebrow danced up. “Hiccups, too?”

“No, silly. Not literally.” I nodded to my right leg which was propped up in the chemo treatment chair.

Dr. Pavelka chuckled and then turned serious. “Don’t worry about this. These things happen with chemo patients. We’ve got a plan and the nurse is talking with your insurance right now. It’s all just a bump in the road.”

The main wall of the vascular area of St. Elizabeth. Something to think about...

On that Monday I had noticed a tightness in my left leg that resembled the after effects of the charlie horses I used to get. I didn’t remember getting one, but I thought maybe a cramp just had to work itself out. On Thursday it was still around and I mentioned it to my chemotherapy nurse. She said she didn’t think it was a cramp, but that she would bring it to the attention of my doctor. She reported back that my doctor had ordered a sonogram of my leg to rule out a blood clot. A visit with one of the nurse practioners calmed my nerves and I was taken to the vascular area of the hospital. The sonographer explained things to me as she took sonograms of both of my legs from the ankle to groin. She wouldn’t tell me what she saw, but she did tell my nurse who wheeled me back to the cancer care center for my scheduled chemotherapy.

The word was that two blood clots had developed in my right leg, one in my calf (where had I felt the tightness) and behind my knee. Back at the cancer care center, my dear friend Amy was sitting in my chair visiting with my dad. She had come to experience my chemo treatment with me and support me. Her presence gave me more peace. After a hug, I took back my chair, and the nurses resumed my chemo routine. I was surprised by this, but glad we were going ahead with the long day. Visiting with Amy kept my mind off things and I'm glad we could bond over this. I had thought I would be leaving by 2pm and Amy would take me home, but all these developments meant it would be more like 4pm. Amy stayed as long as she could and Dad would see that I got home. I was assured that Dr. Pavelka had a plan to address the clots and the nurse was already coordinating with my pharmacy and insurance the best course of action. I took the fact they were going to proceed with my chemo treatment to mean that things were going to be okay. 

The support and love of friends like Amy mean so much!

That’s when Dr. Pavelka. came in. It turns out that it was more difficult to get my insurance to cover the life-saving treatment than to diagnosis and prescribe the treatment. Finally all parties agreed upon a blood thinning regime of subcutaneous injections twice daily for six months. Seems like a long time to me, but it’s what needs to be done. So for the next six months I am injecting a blood thinner in the fatty area of my stomach (that’s about anywhere on my stomach) twice a day. I get a reminder on my phone at 7:00 am and 7:00 pm to the tune of “Ode to Joy.” Good thing bikini season is over; I’m covered in tiny bruises in various states of healing and will be for awhile. 

Two weeks later Dr. Pavelka and I were discussing bumps in the road again during a scheduled visit with him before the start of my second last round of treatment. (I receive weekly treatment every Thursday. Six rounds with three treatments each. I am about to begin round five.) I had visited the cancer care center briefly the day before for my blood draw. Evidently two of my counts were low, my white cell count and hemoglobin. I had noticed that things were trending that way, so I wasn’t completely surprised by this news.

Dr. Pavelka wasn’t surprised either. He says that the effect of chemo is cumulative and that I should expect it to be harder now than in the beginning. I had noticed that I was getting more lethargic and my resting pulse was higher. He says that both are directly tied to these lower counts brought on by my chemo therapy. His treatment plan was to postpone the start of round five one week to give my bone morrow a chance to recover and to put me on an iron supplement.

Despite the blood clots and the lower counts I am doing well. I get very tired quickly, but I donn't experience the sickness we imagine with chemotherapy. I am taking anti-nausea medicines that really work. Still I don't like these hiccups and bumps. Dr. Pavelka admonished me, “You can’t expect everything to go smoothly all the time.” 

Yes, I can, and I do. But I am learning to nod my head and be flexible. I’m adjusting my brain around these developments. I’m disappointed that I’ll have to postpone some vacation plans Dan and I had discussed. I’m trying to be kind to myself, but not be lazy. I’m working part-time (24-30 hours a week), working on some creative projects when my brain is working, and trying to be more helpful around the house. I am still largely staying with Mom and Dad, for which I am greatly thankful. They are a great reason for my peace of mind, and the fact that I get fed and have clean clothes to wear.

“These are just bumps in the road. We are on the right course,” assures Dr. Pavelka.

The Best Medicine

It is not surprising that this new chapter of life battling cancer began in the Mother Church of the Diocese of Covington and landed me in our Catholic hospital for ten days. St. Augustine of Hippo once said, “The Church is a hospital for sinners, not a museum for saints.” This took on new meaning for me in May. My hospital stay showed me a stronger connection between the Catholic Church and hospitals. I have to admit that I hadn’t really considered it before, but historically hospitals were founded by religious orders, and the whole concept of tending to the sick and infirm is at the heart of the ministry of the Church.

All of the hospitals in northern Kentucky are Catholic hospitals affiliated with St. Elizabeth Healthcare. Our bishop serves on the board of directors. Each facility is highly rated and committed to upholding the Catholic teachings regarding the sanctity of life. I have found that under the patronage of St. Elizabeth of Hungary the hospitals are a part of my spiritual home. God is doing great things there and Jesus is very present in all the rooms and departments.

If we were to gage our perception of medical care from television we would think that spiritual care is none existent. How often I have watched the medical staffs in the fictional St. Elsewheres of the television world thinking the kind of care most needed was spiritual care from a priest or minister referencing the Bible. Except for Fr. Francis Malcahy from the battle grounds of the M*A*S*H 4077, there have been very few instances of television patients receiving spiritual care while their medical needs are met.

Prayer is the Best Medicine

This is why Dr. Bernardon’s care of me in the Emergency Department was so surprising to me. He was the first person to convey to me the importance of my faith in my healing. He was the ED doctor who ordered the CAT scan that showed the large mass on my left ovary. I remember that he held my hand, prayed with me, and told me “prayer is the best medicine” as we discussed for my road ahead to discover the true nature of my illness. What a surprising comfort it was to have my spiritual care continued and encouraged by my doctor!

In the wee hours of the morning I was transported from the ED in Covington to the Medical Intensive Care Unit at St. Elizabeth in Edgewood. I spent the next ten days there (four in the MICU and six in the Transitional Care Unit.) There I experienced the same level of medical and spiritual care. Because I was anemic and there was a concern that I had a GI bleed, my gastroenterologist Dr. Gregory Salzman was called in. I love him. He has shared with me several times our common faith. He is a joyful soul who sings in the operating room and watches EWTN while on the treadmill. He ordered a colonoscopy, and it is a true testament to his character that I still like him after he put me through that.

My night nurse Deana was an angel. A young lady with a beautiful smile and an efficient bedside manner, Deana had to see me at my worst and help me through my difficult colonoscopy preparation (it took two failed GoLightly drinks, three to four enemas, and an ng tube to complete). I felt comfortable with her, comfortable enough that late at night, when all my visitors were gone, she was the one I expressed my fears and shortcomings to. She held my hand, wiped my tears, and encouraged me through those difficult nights. It was Deana who prayed over me before they wheeled me down the hallway for a D&C before my family and Dan had arrived.

The Great Physician

Throughout the hospital there is ample evidence of the Catholicity of the hospital without being off-putting to people of other faiths. The centerpiece of the main entrance is a large crucifix hanging from the ceiling. Each hospital room has a crucifix on the wall. There are posters and paintings with scripture passages and images of Jesus in various areas. I especially noticed the image of the Great Physician in the pre-op surgery room. The image of surgeons and nurses working on a patient with Jesus guiding the hands of the main surgeon hangs in the main walkway so that patients and medical personnel alike can be encouraged. I found inspiration from this when I was waiting during an unexpected delay before my

hysterectomy.

Every day begins and ends with prayer over the general intercom heard in the hallways. This is not a traditional prayer, but a general, spontaneous prayer for all those needing healing and those who care for them tailored to the time of day. The staff made sure that I received Holy Communion every day. Most days a priest stopped by after having said daily Mass in the chapel (which was I could view on the television). Outside each patient’s hospital room there is a placard that indicates the kind of food, visitors, care, etc. that he or she is to receive. It can also be marked “communion”. I like that they consider it just as important to note the Spiritual Food of our Lord as it is if the patient is restricted to clear liquids.

And I received visits from the clergy. My parish priest came to visit twice and offer his prayers and blessing. A former pastor who has retired stopped by.  I received the sacrament of the Anointing of the Sick again from the priest who gave me my first Holy Communion in second grade. That was a sweet memory.

Be Not Afraid

 

And the chaplains visited me. Deacon Tom Dushney came to see me three times. I had never met him before, but he regularly visits the patients at St. E. His last visit was the morning of my hysterectomy. He came early in the morning before anyone else arrived. He brought me a gift he called a “Comfort Cross”. It is shaped so that a person’s hand can easily wrap around it. He told me that he had asked God for a Bible passage to share with me.  He was given, “Be not afraid. I am always with you.” Tears streamed down my face. These were tears of joy, as I recognized those words. St John Paul the Great spoke those words to us upon his election as pope. I have long considered him to be my Holy Papa and those words, heard on the morn of my surgery to discover if I had cancer, were the most welcome balm. I clutched that cross. As I went into surgery, I told Mom to put that cross in my hand so I would be holding it when I woke. Every night I go to sleep holding my Comfort Cross. I know that the Lord is with me and I have not felt abandoned by my God.