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.

 

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.

 

Stressed AND Blessed

 My emotional capacity is overloaded.

·         My car has broken down three times in the past few weeks: two sensors and my battery failed, all at different times, of course, but fortunately all at home.

·         I’m giving my seven-year-old cat back to ARF (Animal Rescue Foundation), where I adopted her as a kitten: it was a hard decision, but for the best. I’ve become allergic to her fur; plus, I don’t want to take the chance of her hitting my incision when she jumps up on my lap.

·         In addition to a pre-op appointment, this past week I had a physical therapy appointment which went over post-surgery instructions. I need to do one breathing exercise plus a few leg exercises three times a day and walk around in my house every couple hours. These things will help prevent blood clots and make the amount of time I’m draining shorter.

Drain instructions and not using my right arm are the biggest concerns for me. The thought of emptying my drain twice a day worries me. Not using my right arm (and, of course, I am right-handed) is going to make for a dull couple weeks: no writing, no reaching, no lifting. Well, I am allowed to lift a maximum of five pounds with my left hand, but the less lifting the better. The point is that the more I use my right arm, the longer it will take for the drain to run dry, which is the goal. To prepare for being one-handed, I’ve cleaned and decluttered my bedroom and made changes: pajamas and outfits (must be button-up) are hanging in my closet; underwear and socks are in two containers on the bench at the end of my bed because my antique dresser is hard to open.

Before my son leaves for college or work each morning, he will need to pour my water for the day (I use a water purification pitcher and container with spigot.) and two cups of iced coffee from the cold brew pitcher. If I want to have my bed made, he will have to do it. In the evening, he will have to fill the water chamber for my CPAP machine. There are probably other details I’m forgetting, but I’m sure I will remember them after he leaves each day. Plus, of course, he will have to do grocery shopping, laundry, dishes, etc. while I lounge around in my bed or the new lift recliner.

And that leads to the many blessings that have come my way already, which include these:

·         My pastor made me a purple prayer shawl.

·         My brother and his wife sent me a soft throw and a Ninja air fryer.

·         My daughter and son-in-law’s church purchased a lift recliner for me since I will be unable to pull the handle on my regular recliner.

·         My daughter has taken care of phone calls and arrangements for my cat, Tango, and for setting me up for housekeeping services through Elder Care, a local nonprofit.

·         She and her girls gave me a lovely pink box filled with snacks, personal care supplies, a soft throw, and a panda bear. The next day she gave me some additional clothing for my post-surgery recovery.

·         People from my church have already provided rides for me and signed up last Sunday to take me to my four post-operative appointments. One couple is taking me to surgery this Wednesday. And another person has offered to pay a local errand and transportation service if I’m in a pinch to find a ride to a medical appointment.

·         Hopestone Cancer Support Center is providing gas cards and meals. I also received a large cloth bag filled with all kinds of useful things for this cancer journey.

I feel loved and taken care of by family and friends. And by God, of course. I keep getting reminders from him in daily devotional readings that he is near. For example, today’s reading included Isaiah 30:15, “in stillness and in staying quiet, there lies your strength.” That pretty much describes the next month to six weeks of my life.

Whether I blog or not for the next few weeks depends on if I am successful in using the speech to text feature in Microsoft Word. Thank you, friends, for your prayers and your encouraging words.

                               

The Scan and the Plan

Waiting for my connection in the Atlanta airport last Friday, I checked my email and excitedly opened the message from Oklahoma Cancer Specialists and Research Institute (OCSRI). A link led me to my PET scan results. Put into everyday English, they said no spread of cancer. It is confined to my right breast.

“Yes!” I whispered and set about to give the good news via Facebook. What a wonderful way to start a Kentucky weekend with my brother Bob and his family!

 And a grand weekend it was. But this is a cancer blog, so let’s go on to the next thing: today’s appointment with my surgeon. She is kind, professional, and explained things very well. My mind is still spinning several hours later with new information and what it all will mean for the month of September and beyond.

I have an aggressive invasive cancer, likely triple negative again. It is smaller than two centimeters, which means surgery first and then chemotherapy. I won’t know anything about the chemotherapy regimen until well after the surgery.

To prepare for the September 4^th outpatient surgery, I have a lymphedema education appointment on August 27. (That is just in case I develop lymphedema someday due to the removal of one or more lymph nodes.) I should receive a phone call soon to set the pre-op appointment in which various tests are done.

What follows the mastectomy is not what I expected: weekly appointments for the first month. That is the easy part. The harder part will be being laid up for an entire month. Dr. Flynn summed up the activities to which I should limit myself for optimal healing: rest, eating, and personal hygiene. (But no showers.)

There go my plans to work from home. “Typing?” I asked. “That’s not one of the three,” she answered with a smile. Talk about disappointment! But as I’ve thought about it, I will need lots and lots of rest without the pressure of accomplishing anything. Who knows? By the end of September, I might have the mental energy to do some reading.

Still harder is the thought of not seeing my grandchildren for an entire month. They are young enough and rambunctious enough to make visits unwise. No singing “The Wheels on the Bus” and “Patty Cake” complete with motions for 15-year-old Benjamin, who has Down Syndrome and autism. No pretend play with 11-year-old Joelle and 6-year-old Ava. No big hugs that almost knock me over from 9-year-old Josiah, who has autism. And no dancing with 2 ½ year-old Elijah.  I guess we will visit over FaceTime.

And I’m not thrilled by the idea of limiting my blog updates to rest my right arm and chest muscles. Pray for me during the possible silences. As you can see, the reality of giving up my regular routines is hard to bear.

But I must dwell on the positives, which include meals from Hopestone, our local cancer nonprofit. And light housekeeping from another nonprofit, ElderCare. And rides to medical appointments with various friends and acquaintances. And, best of all, the constant company of the Holy Spirit to comfort and encourage me. I’m quite sure there is plenty to learn in long recoveries.

 

               

Brief Update

 Tomorrow (August 14) I will get a whole-body PET scan at OCSRI, Tulsa.

Today

Today I received my diagnosis: high-grade ductal carcinoma in situ. Let me translate.

High-grade means aggressive/fast growing. Ductal carcinoma means cancer that has formed in the milk ducts. In situ means within the ducts.

Dr. Moussa gave me the starting plan: first, OCSRI will call to set up an appointment for a whole-body PET scan asap to determine if the cancer has metastasized (in other words, spread). If I’m all clear, then the next step is a mastectomy.

I’m somewhat shaken by this definitive diagnosis but also relieved to be back in Dr. Moussa’s care.

The drive to and from Tulsa OCSRI was no problem. I spent it praying and singing and praising God. I needed that time.

And I’m looking forward to a week from today when I’ll be on my way to see my brother Bob and his family in Kentucky for the weekend. 

Timeline

Friday, July 5, 2024

Lump discovered. Tried to schedule a mammogram myself but mentioned the lump, only to learn that I needed a doctor’s referral for a diagnostic mammogram. Appointment with my ARNP. Referral for mammogram sent. Received a scheduling call and found out the referral was incorrect: instead of diagnostic mammogram, it said screening mammogram. Called doctor’s office to ask for another referral.

Long weekend . . .

Monday, July 8, 2024

Received a scheduling call and asked for the soonest appointment possible. Result? 11 a.m. on July 16.

Long week . . .

Tuesday, July 16, 2024

The mammogram technician took multiple views. The radiologist requested an ultrasound. The ultrasound technician had difficulty locating the lump. In consult with radiologist, no one said the “C” word, but he recommended a biopsy and suggested I schedule with breast surgeon. Imaging sent to my primary care to do the referral. I left a note with information at the doctor’s office. Unfortunately, my note led them astray.

               

That week . . . (lost track of days)

A call from doctor’s office that referral was rejected by OCSRI (Oklahoma Cancer Specialists and Research Institute) because they do not perform biopsies. I gave the nurse what was listed online as the breast surgeon’s contact information (in Tulsa).

Call from imaging to schedule me for biopsy locally. Declined, determined to reach the breast surgeon.

Could not find breast surgeon’s office or even phone number despite multiple calls to Ascension St. John’s, Tulsa. Was eventually referred to hospital scheduler and found out that the breast surgeon rarely does biopsies, but he could schedule me for one with someone else at St. John’s in Tulsa. I said, “No thanks,” called the Bartlesville hospital and scheduled. (Why drive the hour to Tulsa when I could have the biopsy locally?) The soonest appointment was July 31^st at 1 p.m.

Gradually realized I had been given incorrect information from radiologist. Temper rose.

 

Wednesday, July 31, 2024

“Lesion” of about one centimeter at the 3 o’clock position very close to chest wall, requiring radiologist to perform biopsy from side instead of top. Learned during pre-biopsy conversation that the last time he had done a breast biopsy was in May. A little rattled, but I put up a good front. Second try was successful, but he forgot to leave the marker, so had to do a third entry. (Fortunately, the local anesthetic worked well.) Radiologist or technician said my doctor’s office would call me when they received the pathology lab report.

Long weekend . . .

Tuesday, August 6, 2024

Called doctor’s office to see if lab report was in. It was, but since my primary care person would not be in until Wednesday, it could not be given to me. (He had to see it first.)

 

Wednesday, August 7, 2024

Stopped by doctor’s office. Pathology report is not yet available to me. Received call in the late afternoon that it was in and I could pick it up in the morning.

 

Thursday, August 8, 2024

Picked up pathology report. Sat in car to read it. It didn’t seem right, only reporting that my estrogen and progesterone receptor classifications were negative. Drove into work and read through it again. Noticed it was titled “Addendum Report Surg.” Realized I must be missing the main report.

Finally did what I should have done (but never thought of) in the first place on July 5: called Tulsa OCSRI to schedule an appointment with my oncologist who treated me for breast cancer eight years ago. Received an appointment for tomorrow morning at 9 am!

Fear and Peace?

Fear slammed into my soul Sunday night with these words:  Recurrence of breast cancer is usually more aggressive and more likely to metastasize quickly.

I prefer knowing to not knowing when it comes to medical information, and this came from a reliable source. So, no; I do not regret learning this even though it frightens me.

On my drive to work Monday morning, I gave voice to my fear. Instead of feeling guilty about it, I told God all about it and asked him to help me remember that no matter my feelings—and no matter the outcome—he is always my loving Father. And then I realized that his peace was still with me.

In my office at Good Shepherd, the two things I’m working on are sermon preparation for August 11 and reading in Sailboat Church: Helping Your Church Rethink Its Mission and Practice for our August 6 Session (translated: Board) meeting.

I’ve never preached on 1 Kings 19:1-8 before, so I’ve been reading various commentaries on those verses. In The Communicator’s Commentary: 1-2 Kings, was this sentence: “Of course, being afraid is no sign of weakness; it is the response to fear that reveals character.” My response: Wow!

But God was not done underscoring his message to me yet. In Sailboat Church, there was an entire paragraph in chapter 3 that gob smacked me. I’ll quote most of it and add emphasis in places:

Through this Advocate [the Holy Spirit], Jesus also gives us peace beyond anything the world can give. The peace that the world gives is a fragile thing built on a foundation of favorable circumstances, plentiful resources, success, and good fortune. The peace that the Holy Spirit brings to believers, however, flourishes in the hardscrabble soil of struggle, danger, weakness, and lack. This peace is built on the foundation of trust and hope in God, who never forsakes the believer. . .. Peace comes not because we are strong but because the Holy Spirit enables us to believe that God is strong.

Today, almost a month since I discovered the lump, is my breast biopsy. And then will come more waiting for the lab results and diagnosis. I’m going to remember that even when (or maybe especially when) I’m afraid, God is strong.

 

The Beginning

      “That’s strange,” I thought to myself. “I don’t remember a crease there.”

                A couple weeks later, it occurred to me that the crease could be a warning sign. To my dismay, my fingertips landed on a small bump leading to a firm mass. I called the office and, to my surprise, got a same-hour appointment. I hurried off to get there in time.

                “I think I have a lump,” I told my new ARNP, and asked for a diagnostic mammogram referral. Then came the week of waiting until my appointment.

                Just like last time—eight years ago—I was quite sure. Sure enough that I told my daughter and son as well as my pastor and church about it and asked for their prayers.

                Just like last time, I pondered how this would affect my life. Immediately, the Author of peace was with me, and the prayer I had prayed for months was answered: “Help me love You more.” Even though I knew from experience the kind of physical suffering that is likely ahead, I found myself singing praises to God, so grateful for His Love, so amazed by his glory.

                Then came today, July 16, 2024. I went in to work as usual, though it was only an hour before I needed to head off for my appointment. What could I get done in an hour? That was easy to answer: continue to read the chapters in Ephesians that precede my sermon text for July 28^th. I marveled at the privilege to center my heart and mind on God’s Word as part of my vocation as a commissioned pastor.

                Having already decided to take the rest of the day off no matter what I would learn, I left the office.

                The mammogram was not as painful as I had predicted, and the technician was both kind and professional. I was not surprised when the radiologist wanted a follow-up ultrasound done. Down the hall I went, and my care was transferred to the ultrasound technician. She, too, was easy to talk to and thorough in her job. Then I sat and waited for the consultation with the radiologist. During the short waiting periods between mammogram and ultrasound and then ultrasound and the consultation, I silently praised God and asked for his continued presence no matter what I was about to learn.

                The radiologist asked the technician to bring up the clearest ultrasound image of the “new tissue.” It was strangely shaped, kind of reminding me of a rather square hourglass, except the perimeter was bumpy. I forgot to ask about its size and the BIRADs rating, but he did say a biopsy was the next step. He and the technician were almost apologetic. I was thankful for their expertise.                 

                The last time I had cancer was in 2016, and that is when I also experienced the “peace that passes understanding” during the grueling treatment that took almost a year. Thus, I know that this waiting time for the biopsy and then for the various imaging and tests that will likely follow before treatment is the easiest part. I can still work and still feel like myself. The chemotherapy will make me feel like I am not myself. There will be twinges of nausea and mind-numbing fatigue along with pain that is impossible to describe. I don’t know what the mastectomy will be like; my previous lumpectomy was pretty much a breeze. But probably the surgery will come first this time.

                After my appointment was over, I went out to my car. First, I called my daughter. Then I called my pastor. When I got home, I told my son. As the day continued, I let my brothers, my church congregation, and a couple local friends know by text, phone call, or email that I have cancer again, and I’ll notify my friends who are not on Facebook in the coming days. I still feel peace, though I know harder days are ahead. This diagnosis rocks my world and changes everything about the coming months, but no matter the outcome, God will be my strength.