Cycles

 Just over a week ago, I was in the grip of intense pain. I finally called the triage nurse, who kindly reminded me to drink more fluids and take my pain medicine. I’m still asking myself how I could have completely forgotten about taking pain medicine when I was in such excruciating pain.

So, I followed her orders and found blessed relief from the pain if I took Tylenol #3 around the clock, which left me in a codeine haze. I dozed and slept, dozed and slept for the next few days, waking just enough to keep drinking water and protein drinks, and eating small meals.

I am grateful to have eased out of that cycle and hope to never repeat it.

Yesterday, I finished another cycle: completing the second of two physical therapy appointments that covered best practices to avoid lymphedema. I’m doing the daily stretches to help my lymphatic system keep up its good work. I know to do a daily visual check of my arms and hands to see if there are any changes, and I’ve learned how to measure my arms each month to keep track of any swelling that may occur.

And today, October 30, my hair started falling out as I shampooed it. Though I’ve been expecting to lose my hair any time now, the handful in the shower drain still shook me up. Within the hour, I went to Great Clips to have my head shaved. It was the first time I’ve driven in over a week. As I backed out of the driveway, I started to sing, and God buoyed me up with joy as I thanked him for feeling well enough to drive, joked with him, and praised him. “Give Me Jesus” is one of my favorite songs. Each short stanza ends with these words: “You can have all this world but give me Jesus.” I sang, “You can have all my hair but give me Jesus,” and laughed out loud.

Who would think of joy and laughter about getting my head shaved? That was God’s gift of joy in the moment. I got to share that joy when my friend Veloy called, and in interacting with the Great Clips staff. That’s the neat thing about God’s joy: uncontainable, it bubbles up and spills out to others.

Back at home, after a delicious lunch supplied by Hopestone Cancer Center, I’m ready for a nap and looking forward to grocery shopping later, covering my freshly shaved head with my pretty purple cap (also supplied by Hopestone).

 

 

 

 

Brutal

 Cytoxan and Taxotere are doing a number on me. Brutal beyond anything I ever imagined. My back feels knotted up in cramps with occasional knife stabs of pure pain. I hobble around with unsteady knees and achy hips. There is no comfortable position, even in my memory foam bed and recliner. The back of my neck is stretched. My shoulders hurt. All is pain.

Last night was endless. Sleep for an hour, wake up in terrible pain, ease out of bed to use the bathroom, lie down again to cramping and knife stabs, somehow sleep another hour.

The cramping and pain attacks started Saturday, were in full force yesterday and overnight, and continue this morning. It is 6 am and here I sit at my computer, which is another pain perspective. Headache, with occasional icepick stabs, my spine wearies from sitting up.

Yes, it is bad. My arms are dead weights, my legs are kind of floppy. And the pain does not stop.

Earlier, I put myself in the surround sound of my headphones listening to Give Me Jesus, a Fernando Ortega album. His soothing voice helps as does the praise, though I don’t know that I can praise when I’m in such pain.

When I attempted breakfast at four am, my cinnamon keto bagel was not so good as usual. I ate it for the high fiber content. Coffee was blah. I may need to give it up. I need to eat vegetables, but they sound too harsh and gross. Heartburn pressure resides in the center of my chest. My knuckles hurt as I type.

Yesterday I gave up on the range of motion exercises, though I did my stretches to prevent lymphedema.

Later I will call a triage nurse for suggestions. Heat? Ice? Distraction, if possible?

Just to let you know . . . usually, side effects get worse with each treatment. Please pray for me.

PS. Now it is close to 10 am and I’m trying to understand what has happened. After writing at 6 am, I retreated to my chair, slept for a while, and then got up to go rest some more in bed, eventually waking up around 9 am. Here’s what I don’t understand: during my sleep it was like a switch was turned off. I’m left feeling beat up, achy, and sore, but the pain attacks seem to be turned off for now. I hope this continues!

Balance

 Yesterday, I went to see my grandchildren. I didn’t realize how exhausted I was until I got there (a mere ten-minute drive). The normal course of action is for me to talk with my daughter a bit and then go back to the girls’ room to play pretend. I was too tired to do that yesterday, and poor little six-year-old Ava just didn’t understand. She began to cry. Dana explained that sometimes Grandma would not be able to play, and I offered to read Ava a book of her choice. That helped. But near the end of my hour plus visit, Ava had an idea. Could I be a mountain for her to drive a toy car on? “Why, yes!” I said. So, for a few more minutes I sat there comfortably on the couch while Ava drove her car up my arm to the top of my head, and Joelle quickly created a small house out of magnet shapes there. It was sweet. My granddaughters’ imaginations always amaze me.

I keep assuming that my reactions to chemo will be the same as eight years ago even though the drugs are not. This first go-round has been filled with surprises. I felt pretty good, though tired, on chemo day (Wednesday) and Thursday. Yesterday I became exhausted, and today the exhaustion increased with the addition of bone, muscle, and joint pain. I pretty much slept until noon and lounged around for the rest of the day. By early in the evening, I felt like I could get some needed supplies at the store if my son took me, so off we went. Now back at home, I have a headache and will probably go to bed soon.

You see, I expected to start feeling better by the weekend, and that did not happen. I don’t know what to expect. And that brings me to my point. As with the recovery from my mastectomy, each day brings the unexpected. I may feel better or worse than I thought I would. And things are always changing. Many of those changes are happy mini surprises, such as being able to extend my arm further or not needing some tiny habit I developed to compensate for discomfort.

My takeaways from yesterday and today are to be very intentional about my protein intake and keep up with drinking lots of water. The short trip to the store reminded me that walking around a little more than I think I can is also good. Balance is the key, and isn’t that true of most of life?

Chemo Day One

At just about every medical appointment I have, my blood pressure is quite high. I attribute that to anxiety. To my surprise, when one of my chemo nurses took my blood pressure this morning, it was close to a normal reading for me. Low anxiety for my first round of chemotherapy? That’s interesting.

After hearing that my mastectomy was just six weeks ago, she did not feel comfortable with subjecting my right arm to the chemo IV. So, to my surprise, she quickly found a vein near the top of my left wrist and successfully got the needle in on the first try. What an expert!

While I still remember the sequence, I’ll share it here. First infused is a saline solution, followed by a longer infusion of steroids. Then, after a 30-minute wait (I think) comes an injection of anti-nausea drugs in the belly that will slowly release for the next five days. It is a big needle, so I was given ice to apply so the shot wouldn’t hurt so much. I believe there was another wait before the first chemo infusion was started. That took an hour, followed by another wait, and then the other chemo drug took an hour as well. A short saline flush followed, the IV was removed, and I was free to go. Sylvia was waiting for me when I got out around 1:15 pm.

I brought more things to my appointment than I needed. Instead of reading the chemo notebook, I played solitaire on my Kindle, steadily drank my flavored water, and ate the snacks I brought: packaged peanut butter crackers and plain Greek yogurt with frozen berries. I asked for a warm blanket once the last infusion started. The IV entry point had started to feel more uncomfortable, and my nurse had the perfect solution: she wrapped a second warm blanket around my forearm. Instant relief!

I’ve been home for over three hours already. I had lunch (a Hopestone meal from last week) and relaxed in my recliner, which is more comfortable, I must admit, than the chemo room recliners. I’m tired and a little fuzzy in my thinking, but hey, neither of those are entirely new to me! Tomorrow afternoon will likely be worse after the injection to keep my white blood cell count up. At least, that’s how it was eight years ago.

Here is the comfort OCSRI offers for the next three weeks until my next treatment: I have the anti-nausea prescriptions on hand; there is a triage nurse on call 24/7 if I have a question or need; and I have the assurance from Mezha (the ARNP I saw yesterday) that she will meet me at the clinic during working hours if I need immediate attention.

Pretty soon I’ll eat the meal Sylvia prepared for me, and Rita will bring dinner tomorrow night. (This is Hopestone’s week off.) Do you see how blessed I am with so much care and support given me?

  

Tired and Grateful

 My brain is tired tonight. Let me tell you about today.

Bev drove me to Tulsa this morning to my appointment with Muse Intimates for a mastectomy bra fitting. There was much more to it than I had imagined—an hour and a half’s worth. The initial measurements were repeated for each bra and prosthetic she had me try. Let me make it clear: I was not picky; the professional bra fitter was. She was super nice and oh so patient, wanting to make sure I had exactly the right fit that was also comfortable. To my surprise, she told me that Medicare plus Medicare supplement (I have both) will cover six bras and one prosthetic for year one. She prefers to do four bras (plus prosthetic, of course) at the initial fitting, so that’s what I got. Within a year, I can go in for two more, and thereafter, Medicare pays for two bras every two years.

Because it was the store’s 17^th anniversary, I received a gift bag. The mesh bag for washing bras and the toiletry bag for traveling are nice. I do not want to divulge the other items, rated X, which were geared to young women with husbands or partners. Those I tossed.

We got back to Bartlesville two hours before my next appointment, so Bev and I enjoyed the yummy salad she had made along with wide-ranging conversation. She dropped me off for my 2:45 pm appointment at Bartlesville OCSRI (Oklahoma Cancer Specialists and Research Institute), where I had blood drawn and an educational visit with my ARNP, Mezha.

Because my surgeon, Dr. Flynn, had told me that recent research shows that there is no risk of having blood drawn from the arm on the same side as a lumpectomy or mastectomy, I gladly offered my right arm for the first time in eight years. You see, my left arm has lousy veins and usually requires multiple sticks before a suitable vein is found. The phlebotomist quickly located a vein and had the needle in before I knew it. I was so impressed!

Then came my appointment with Mezha, who is a delightful person. She shared LOTS of information with me and answered my questions clearly. Plus, I gladly received all of it in writing in a notebook that OCSRI gives patients. I guess I know what I will do during chemo tomorrow.

As lousy as it is facing chemo again (and I could lose my hair as soon as ten days from tomorrow), all the OCSRI staff make it less so because of their upbeat attitudes, kindness, and professionalism. After my appointment, I called Bev, and she got there within ten minutes. During that brief window of time, my chemo nurse for tomorrow came out to the front where I was waiting, introduced herself, and checked with me to make sure I took my steroid prescription today.

I think my brain is tired from change and new experiences, from appointments and new information, and from being away from home for eight hours today. I almost didn’t write, but then realized I would regret it later if I let this big day go by without writing.

I am grateful today to a friend who gave up her whole day to get me to my appointments; for the capable, friendly fitter at Muse; for bras to wear paid for by Medicare; and for the staff at OCSRI.  I am grateful that I have excellent medical care and support for my chemotherapy treatment. I am grateful for the free hats I picked up at Hopestone Cancer Support Center yesterday. I am grateful for the meals Hopestone provides weekly and for the meals my church supplies the occasional week when Hopestone does not. I am grateful for the weekly housekeeping from Elder Care. I am grateful for my family and friends who love me and pray for me. And, of course, I am grateful for my Lord and Savior, Jesus Christ.

On this night before chemotherapy begins, I am a bit anxious, knowing how hard the next few months will be from its side effects. I pray I will be able to sense the comfort of the Holy Spirit amid my days and nights, though I know by faith that God is seeing me through.

 

Blessings

One of the convenient things about having my chemotherapy in Bartlesville is that my son can drop me off at my morning appointments. Yesterday, I received the schedule and appointment times for the first two rounds of chemo, which gets me to the halfway point. Then OCSRI will schedule me for the last two rounds.

Getting treatment involves three separate appointments. Tuesday will be getting my labs done. Wednesday will be chemo day, which takes about four hours. Thursday will be injection day (a shot to help keep my white blood cell count up). Then I get three weeks off.  

The first round will be October 15-17. The second round will be November 5-7. Round three will be near the end of November, and round four will be completed before Christmas.

I’m enjoying doing various errands around town. Knowing that I will be “down” for at least a few days after each chemo session makes me appreciate the ability to get out now. Today I took my son to and from work, went to a few garage sales, went to the pharmacy, and browsed at a local clothing store.  Yesterday I went to WalMart, which normally isn’t on my list of fun things to do, but it is now. I’m reminded to thank God for all the little things that I normally take for granted.

Each day I gain a little more ground. It is a happy surprise when I reach for something with my right arm, and it doesn’t hurt. I’m thrilled to be sitting here typing instead of using speech to text. Yesterday I saw all five of my grandchildren, which was a real treat. It’s so nice to be able to do more things, even the twice a day stretching exercises to keep my lymphatic system in good shape and to improve my range of motion.

I couldn’t stand my shaggy hair another moment and got it trimmed this morning even though in 3-4 weeks it will all come out. I plan to have my head shaved before I start to shed, though. But I’m sure enjoying these last weeks of having hair!

All Things Considered

Considering my circumstances, the news yesterday couldn’t have been better. Not only will I have just four rounds of chemotherapy, but all of it can be done here locally in Bartlesville. Chemo will be once every three weeks, starting next week. I do not have the exact schedule yet, but I should be done before Christmas.

Here are a few more details to help you understand why this is such good news. First, I will not have a port. Chemo will be administered in my right arm, which should be able to handle four infusions. Plan B--if there is a problem with finding a good vein for the IV--is to have a pic line put in for the infusions. Second, three months of chemo is about half the length of the treatment I expected to have. And, of course, the huge plus is getting this done locally instead of having to go to Tulsa (an hour away).

I must admit that I did not feel happy after yesterday’s appointment, though. Once I was back at home, the reality of starting chemo settled in. Reading the information about the drugs I’ll be receiving, including the long lists of possible serious side effects with the worst one being death, was sobering. It brought back memories of just how sick I was last time. The “sick” is hard to describe: bodily pain, exhaustion but inability to sleep well due to the steroids that fight inflammation, nausea, difficulty eating and drinking, and the foggy “chemo” brain. There was also a strange sense of not feeling like myself.

It's sobering, depressing, and another reminder of my mortality. Without Jesus, I could not bear going through all that again. I never “fought” cancer the first-time round. All I could do was lean into Jesus—I don’t know how to describe that, but it was very real—and trust all possible outcomes to him. That is the only way I know to get through this.

October 3

 

On Saturday, October 3, 2009, my sister died from ovarian cancer, having survived just three years after her diagnosis. Thus ended my short trip to see her that turned into a 66-day bedside vigil. The first month was at UNC Women’s Hospital, a truly excellent facility in Chapel Hill, North Carolina. The last month was at a skilled nursing facility, Kindred, in Greensboro, North Carolina. Kindred was a god-awful place but the only one covered by her insurance.  (It was her medical insurance that forced her move.)

I never could have guessed that fifteen years later I would be in my second bout with breast cancer, receiving good news on October 3, a Thursday: Today I was given the green light to start using my right arm more and even drive again.

A nurse removed the steri-strips and did an ultrasound to check on the bit of fluid retention under my scar. I was relieved to learn that I would not need a needle poke to remove the fluid. Dr. Flynn gave me the good news, sent a referral to Muse Intimates for an appointment in the next week or two to be fitted for a mastectomy bra and prosthesis, and sent me on down to the fourth floor of the Mary K. Chapman Breast Center to see the physical therapist.

There, the physical therapist measured my right arm’s range of motion and spent the next hour giving me instructions on exercises to facilitate a healthy lymphatic system to prevent lymphedema. These fourteen exercises (all brief) I will do twice a day for the rest of my life. With my mastectomy, I only had four lymph nodes removed, but still, any time lymph nodes are surgically removed, there is a chance that the lymphatic system could get backed up, resulting in painful swelling that does not go away.

In a few weeks I will see her again for further instructions. She will teach me how to measure the circumference of my arm in three places, which I will do once a week to make sure there is no start of swelling. And I will get a prescription for an arm compression sleeve to use for travel (flying or going to the mountains) and just in case I experience any start of arm, hand, or finger swelling. The trick is to catch and treat the swelling right away.

Next Tuesday, October 8, I have an appointment with Dr. Moussa, my oncologist. I believe he will explain what my chemotherapy treatment will be, when it will start, and when it will end.

It seems to me that good news during cancer treatment is usually mixed with sobering realities. But ever since my sister died at age 56, I’ve felt that every year I get to live beyond that age is a bonus year. I’ve made it to 69 already, and I’m hoping for many more years to come.