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.

 

Speech to Text: Progress

 

Yesterday the drain was taken out! What a relief! The other piece of good news was that I could discontinue the antibiotics I have been taking since my surgery on September 4.

Before I got any crazy ideas of resuming a normal life, the nurse quickly informed me of remaining restrictions. I am still under the rest, eat, and self-care rule. By the way I am doing very well on the resting and eating part. Surprisingly, I have lost a little weight, despite the scrumptious meals that Hopestone Cancer Support Center provides for me. The self-care rule is that I may use my right arm just for personal hygiene. (That’s good, because I’ve never been successful at brushing my teeth left-handed.) There have been a few times I try to use my right arm without thinking—like reaching for something in the cupboard--but usually a sharp pang in my chest stops me. When I asked about taking a short walk down the block to enjoy the fall weather, she said, “no, but you can sit outside.”

The best good news of all, however, is that I get to take showers again, starting tonight. I wonder what my hair will look like with all the grease removed. Using no rinse shampoo like they do in hospitals or dry shampoo just doesn't cut it.

Next week I will see my surgeon. Besides taking the steri-strips off the surgical incision, hopefully she will clear me for more activity. I will also see the physical therapist to learn exercises for my arm.

It is nice to be making progress. This recovery from surgery is taking much longer than I had anticipated. Having so many restrictions has been hard, even though I know they are for my own good.

Many years ago, when I was suddenly faced with chronic illness that robbed me of my energy and heaped on what I called “traveling pain,” I wrote a brief poem that included the following line: “life narrows to the marrow.” I discovered then that the loss of stamina and energy as well as the presence of pain forced me to make choices every day about what I could and could not do. I also found out that when life became more restricted, I leaned on Jesus more. He is my hope and my strength.

Speech to text: Grief

 

On Sunday the 15th, Pastor Katrina came to visit. She brought prayer beads and a book. The Anglican prayer beads are in the form of a wristlet. But what I want to talk about is the book. Its title is Grief Undone: A Journey with God and Cancer, by Elizabeth W. D. Groves.

Katrina said that to her, the book seemed to have my name written all over it. However, she added that I may or may not wish to read it right now. I wasn't sure if I would or not.

But I did. A few days later when I opened it up, I wondered if I would get past the first page or two. I didn’t know if the topic of grieving for a spouse dying of cancer would be hurtful or helpful. Not that I ever had a spouse die of cancer, but I did sit bedside my sister for two months in 2009 as she died from ovarian cancer. And now, here I am with a recurrence of triple negative breast cancer, which has made me start to think more about my own mortality.

I finished the book last night. Reading it was a profound experience with God. The author’s faith resonated with me. She, her dying husband, and their family experienced so many moments of God's nearness, his beautiful mercies, and his glorious love. That was life affirming for me because I have experienced so much of the same. Like her, I have had people say I am so strong, but I am not. It is Jesus who is strong, my rock, my savior, and my Lord. I have found again, amid cancer, a closer, more precious relationship with Jesus.

The book brought me to tears a few times as I felt the author's profound grief mixed in with the hope of heaven. That doesn't say it strongly enough. Not just the hope of heaven but a glorious inner vision of the reality of believers’ eternal life with Jesus Christ.

The first tears I cried over having cancer again happened during Pastor Katrina’s visit. Those came about as I spoke with her about my grief over this cancer. I hope to live, of course, but if I do not my heart aches for my family. I want to see my grandchildren grow up. I want to be a supportive mom to my daughter and her husband. I want to see my son launched into independence with his own apartment and a stable full-time job.

Right now, I am looking forward to seeing my grandchildren in person again once I am sufficiently healed from my mastectomy. Facetime is nice but not enough. Oh, how I miss them!

Speech to Text: How I Became a Rebel

Last Sunday evening, I rebelled. I was so hot and uncomfortable that all at once I got up, went to my room, and took the compression bra off. That is what was bothering me: I get too warm easily, and the compression bra was just too much. I had two reactions: relief and dismay. It was the first time I had taken a close look at my missing breast. I had not expected my chest to be concave. Enough said.

The relief was so great that I spent the next 24 hours without compression. That gave me enough time to launder the bra. Reluctantly, I put it back on.

On Wednesday yeah it's my weekly appointment, I confessed to the nurse. She was not happy. Neither was I because my drain was still producing. The goal is for the drain to run dry and get it taken out So that I can take showers again. Taking off the compression bra increased the drain output. Hopefully, with my renewed determination to follow all the rules, The drain will be removed next week. However, I learned that I must still wear the compression bra 24/ 7 For a full month after the drain is removed. That deflated my sails.

Actually, I had two appointments yesterday. The first was with a radiation oncologist. It was a consultation about radiation. There I learned why radiation is not not given for a recurrent breast cancer: because the potential side effects are horrific. They include fracturing of the ribs, the affected skin becoming leather like, and lymphedema. However, he said, that a more focused radiation can be used if cancer recurs in the chest. He said that after chemo is finished, I should check the area on a weekly basis, running my fingers lightly across the area which should be smooth. If I would find a lump or a bump, then I would contact him and if that small area was malignant, then a focused radiation could be used to kill off that small area of cancer. I  fully intend to follow those instructions.

Today I am worn out from yesterday's appointments. I was away from my house for about four hours. No, make that 5. As I compose this blog, I am correcting some of the stranger's errors, but by using my left hand. By the way, the word stranger’s was supposed to be stranger.

There is a lovely new development that will help me keep my mind off the discomfort. My brain has decided I can read again. I am so thankful for the return of that ability, and I am thankful for friends and family who provide such wonderful support for me.

  

Speech to Text: Findings

 It was a relief yesterday to get the gauze bandages removed.

I was told that everything looked good. I am healing well. After the area was wiped down with an antiseptic, new gauze was placed.

The nurse went over the pathology report with me. A new section had been added. No mention was made of stage so I asked her if she knew what it was. Her best guess, since the final determination is made by the surgeon, was stage 2B. Later in the day, I decided to read the copy of the pathology report she gave me. It took a while because there were terms to look up.

Here is my summary:

Stage 2B, grade 3 invasive ductal carcinoma. Grade 3 indicates that the cancer is highly aggressive.

Skeletal muscle is present and involved. Carcinoma invades skeletal muscle. All regional lymph nodes negative for tumor.

The type of breast cancer present is triple negative, which is the same type I had eight years ago. Triple negative is considered to be one of the most aggressive forms of breast cancer.

The report gave my recurrence score estimate of 40.2. That is within the possible range from 9 up to 55. What does that mean? There is an increased likelihood of early systemic recurrence. That is the statement that really gets to me.

As all of that information sunk in yesterday evening, I became depressed. Is this what I'm facing for the rest of my life? Treating this local recurrence? And then facing at some point a systemic recurrence? Is the rest of my life going to be defined by cancer treatment? I went to bed depressed and woke up depressed this morning.

It did not help when I accidentally spilled the drainage poured into the little measuring cup. I empty the drain bulb two times a day. And I record the amount drawn to show the nurse at my next appointment. After cleaning up the mess, I had to guess how much had been in the cup. I guessed 15 ml.Hopefully, by next week's appointment, the drain will run dry so that I can have it removed and take showers again!

I was tempted to either try to sleep again or get lost in a solitaire game. Fortunately, I remembered that it was important 2 turn to Jesus for help. Before opening today's devotional from the book sailboat church, I asked God to please speak to me. What I did not expect was how perfect today's devotional would be for me.

This devotional is one that our church’s session is reading to seek God's will for our small church moving forward. The format is like this: a scripture is named, followed by the focus text, which is quoted. Then follows a brief paragraph titled listening to God. It is written in first person, like God is speaking directly to you. What is said relates to the text. Here it is, in quotation marks, and followed by my response.

“Your lack is never the end of the story.”

How I needed to hear that. With cancer treatment, I lack energy. I lack the ability to do much of anything. I wonder what will happen to the plans I have for my future.

“When your resources run out, if you are in the flow of my will, all the resources of heaven are available to you. It grieves me when you forget that I am your source of supply.”

Immediately start to pray. Forgive me for forgetting this so quickly. Thank you for reminding me that I've given my life to you and that you are in control. Open my eyes moment by moment to your will. Help me to fully rely on you, ohh God.

“Praying in the name of Jesus is not magic. It means that you surrender yourself to my will and are willing to be used for my purposes. Let me work through you to do miracles in the lives of others! Together, we can do more than you could ever ask or imagine.”

It seems that surrendering myself to God's will takes place day by day, and often moment by moment. I know that it is easy for me to slip into depression rather than to submit myself to God. Help me, God, to keep coming back to you, for in you alone is abundant life even for someone with cancer.

This morning's experience reminds me that Jesus is my lifeline. It reminds me that he is faithful. It reminds me to keep searching, to keep praying, to keep reading his word. I do not know what the future holds, but i know this: God loves me and God will use this time for his glory. And beyond that, he will keep blessing me with his love.

Speech to Text

 

September 10, 2024

Speech to Text

last Wednesday was long.. We arrived at St. John's at 10:00 AM for surgery at 1:30 PM. As it turned out, my surgery started at 3:30 PM or so. The high point in the day was getting to drink a 12 ounce bottle of apple juice yet 11:30 AM, a new protocol for surgery preparation.

Because it takes me so long to wake up after a general anesthetic, we we're not ready to head for home until 7:00 PM.

Since Wednesday, the days have blurred together. The first couple days I spent napping day and night, getting up 2 use the bathroom or take another pain pill. A couple days ago, I cut way back on the pain pills and started to stay awake for a good part of each day.

Several women from church provided meals. And oh have I eaten well! I've been trying to follow the doctor's orders, getting up to walk around the house every few hours and doing my best not to use my right arm. Not using that arm was very easy the first couple days because it hurt so much when I moved it. That is not the case now come on which I'm happy to announce. And I'm having less drainage in my drain pump every day.

My brain power is slowly returning. I have added scrolling Facebook or playing kindle games 2 just listening to music. I'm still not focusing very well, so reading, as in a book, is still out of the question. Morning get space delete. OK what I meant was

 

delete delete space delete

I'm having a few problems navigating speech to text, as you can see.

My son is handling details for my day each morning and evening. Things like filling glasses of water from the heavy water pitcher and preparing glasses of iced coffee. Plus, of course, doing dishes. End my laundry. You lying

I am choosing not to make corrections for two reasons. First, because I'm just learning speech to text and don't want to use my right hand to physically make corrections. Second, to let you see how this speech to text writing works for me. When you see something that does not make sense, it is simply what the computer typed instead of a command I tried to give. I will say that speech to text works way better than it did 20 years ago.

My daughter came by on Saturday morning, and it was so nice to see her. We keep in touch during the week through phone calls.

Many thanks to the ones who have provided meals this week, into hope stone for the meals they will provide again starting tomorrow. And sanks to those who have already given me rides to appointments and who will be giving me rides to appointments.

During July and August, I experienced so much joy and peace bubbling up from my soul. That definitely was the gift of the Holy Spirit. Since my surgery, I have not been feeling that joy and peace but I recognize that God is with me even when I do not sense his presence. I think that right now my body he is using all its energy to feel. End my mind and my heart are still digesting the information trauma the reality, that the road ahead will be long and hard. You see, last night I looked up my pathology report. I had to look up medical terminology to understand just about every single line of the report, and i'm not sure did I thought it all even then. What I do definitely understand though is that this cancer is a grade 3, meaning it is highly aggressive. A bit of it had already spread into my chest muscle. The report said that the surgeon removed 4 lymph nodes. From other things said in the report calm huh i am guessing that this is a stage 2A cancer. We will see tomorrow, when I see my surgeon again, if I am correct or not.

To say that God seeped joy and peace upon me to the overflow this summer to help me prepare for the journey I had. This fresh knowledge that God is always near is encouraging. I do not have to rely on feelings to know it. Please continue to pray for me, for my medical team, for my family and friends. Remember that God is good all the time, and all the time God is good!

 

 

Here We Go

September 3, 2024

Tomorrow’s the day: total right mastectomy at 1:30 pm. The next time I blog will be by dictation, hopefully within the next two weeks. I have no idea how soon the urge to write will hit me.

But today was filled with “last times.”  I’ll follow the day’s chronology.

I got in to work at my church at 11:30 am, following a home visit from Elder Care to initiate their weekly housekeeping service, which is funded by a grant. The two and a half hours I spent in the office today were the last ones for a while: I’ll be out of the office for a month or so for recovery from surgery and for an undetermined start and end date once my chemotherapy schedule is determined.

From there I went to pick up Tango, my cat, from the vet (where she boarded for the weekend and got her vaccinations up to date) to take to ARF (Animal Rescue Foundation). That was hard, to say the least. I’m glad that ARF is such a wonderful place. Tango gets her own room for a few days to acclimate before moving into the common space for cats. The side facing into the common space is clear glass; on the other side is a generous window facing out to a lawn with wooded area. The cat tree by the window gives her a clear view outside. Water, food, cat bed, and kitty litter box are all provided. The staff and volunteers clearly love cats, so she will get good attention. I pet her for at least ten minutes, telling her I was sorry to be letting her go. But by the time I left ARF, I was ready to start coughing from all the fur and cat smell.

After returning my neighbor’s cat carrier, it was time to go see the grandkids one last time before surgery. Because there are five of them, all rambunctious and totally in love with me, I will not be seeing them in person until I am well-healed from surgery. I sang songs to Benjamin a few times. What good is a grandma visit without “Wheels on the Bus” and “Patty Cake”? Eleven-year-old Joelle showed me educational videos on the iPad—one on Abraham Lincoln and the other on the Harvey homes of the 1850s (the original motels and restaurants every 100 miles on a westward bound train route). At one point, I had both Josiah (9) and Ava (6) cuddled up with me on the rocker recliner. Two-and-a-half-year-old Elijah proudly carried around one of the construction paper stars that Josiah brought home from school today, and when I gave him one of my business cards, he was over the moon with happiness.

Dana and Shawn prayed for me before I left. I feel both loved and bereft, thinking of the next weeks without my Tuesday and Friday visits. We will do Facetime, and Dana will visit me on the weekends when Shawn is home to care for the troop while she gets a little break.

A little while ago, Joseph and I went over two simple but very important tasks he will do each morning before leaving for college or work: filling big glasses of water from the pitcher water purifier to put in the refrigerator and making a couple glasses of the iced coffee I love. Sounds a little over the top? This falls under the category of not using my right arm and minimizing stretching and lifting of my left arm.

While being away from my part-time pastoring, giving away my cat, and not seeing my grandkids twice a week like I’m used to (yes, I know I’m spoiled) are what I’m grieving right now, I also have the sense that Jesus is preparing some sort of new beginning for me. My guess is that it involves getting closer to him. What I know is that I can trust Jesus for the present and for whatever the future will hold. That’s enough for me.