Mind Over Matter

6/20/19
The end of chemo is not the end, it’s just the beginning of the next phase of your cancer diagnosis. While I was going through chemo, I was too sick to even think very much about what came next. When I did think about it, I would put it out of my mind. But, now that chemo is over my mind has gone into overdrive, worrying, studying about my cancer, reading about the long term and late effects that going through chemo does to your body. It is way too much information! In preparation for my doctor’s visit this week I wanted to be prepared so as I studied, I made a list of questions I wanted to ask him. A long list. After a few days of this insanity and many sleepless nights, I woke up one morning and picked up my 365 day devotional book “Jesus Calling.” I can’t say that I read the entries for every day of the year, but on those days that I pick up the book there is always something that applies to what is going on in my life and this day was no different. The word of the day from Jesus was “Relax and know that I am God with you…Stop trying to monitor MY responsibilities – things that are beyond your control. Find freedom by accepting the boundaries of your domain.”

When the “word” speaks to my heart it is as if it is dancing off the page and coming right towards me in all caps with the preface that screams, “Hey, this is specifically for you!” Of course, it is often something I know in my heart already, but I need reminders, especially when I get obsessive about something. God is so good to me, always leading me where I need to go to get enlightened and comforted when I need His wisdom. That’s all I needed to stop the madness, to chill, to let go and let God. The truth is, worrying will not help because this cancer is out of my control, whatever may happen in the future cannot be predicted by me or even by my doctor. It is the unknown variable. I hate the unknown, it has always scared me. But, I have to live with it because I have no choice. I can either let fear define me or I can live my life being grateful for each day, and making the most of the time I have left on this earth. No one really knows how much time there is left in life, so I chose to live without fear! And, when I forget that, I trust that God will find a way to remind me that He is the one who is in control. “Don’t be afraid; just believe” (Luke 8:50).

The doctor ordered my Pet Scan which will happen sometime in the next week or two. I’m praying that it will be free of cancer so I don’t have to have any radiation – we shall see. In answer to my question of when I will begin to get my strength back, he told me that the chemo was an assault on my body, big time, and that it would take at least 6 months for me to feel like my old self – though there may be some lingering side effects. Well, that was something I didn’t want to hear. I want to be well, like NOW.

6/24/19
Each morning I wake up, expecting to feel a little better, a little more energized and sometimes, I do. But, it never lasts. Getting dressed, a short walk, picking up around the house, watering the flowers, driving the car, going to church – those small efforts leave me exhausted and in the need of rest. I have no choice. This past weekend, nearly 3 weeks since chemo, I was expecting to feel a lot better. Instead, I was still confined to the sofa most of day with low blood pressure because of dehydration. I had gone out just for about 30 minutes to work in my garden but it was too much for me. Dehydration causes me to feel so awful, almost as if I am too drugged to move my body, while at the same time my head feels weird, foggy, and aching. I really should have gone in for fluids. The doctor had told me to listen to my body. Well, that was good advice, though I don’t like it. This body is such a nag, it won’t let me do anything I want to do, and it won’t take “no” for an answer. It pretty much downright refuses to listen to me when I try to tell it what to do. So, I rest a lot, nap a lot, and bemoan my weakened state a lot. My husband keeps telling me, “it’s temporary,” but that doesn’t make me feel any better.

Even though most of the hair on my body is gone, there are a few broken stubs of hair here and there. But, with each chemo round there were fewer and fewer stubs left. After this past chemo my body is pretty much like a cue ball, smooth and devoid of all hair. My scalp gets really tender about two weeks after chemo which, I’ve learned from experience, is a sign that it is destroying hair follicles. I’ve read that my hair will start to grow, though sporadically, about two months after my last chemo, though it may look “different.” Apparently the chemo damages the follicles so that the hair doesn’t grow back normal and full until about 6 months after chemo. Now THAT gives me the blues because I cannot take wearing hot chemo caps or my wig. I only wear those when I have to go out in public. My neighbors have gotten used to seeing my bald head. The only reason I wear it in public is because I don’t want to make people feel uncomfortable around me. I can tell they are because even just seeing the chemo cap makes them turn their head away; they don’t know what to say to me. I cannot wait until I have at least a few stubs growing so that I can go out in public without any headgear.

BALD IS BEAUTIFUL

Tomorrow is the day I get my Pet Scan. Yes, I am a little anxious, but also full of hope. I’ve come a long way these past few months and gone through a lot of pain and suffering, but it has made me stronger and, I hope, wiser. Life is precious. Each day is a blessing from God, and each person who loves us a gift that must be treasured. I worry that I may have been a “Debbie Downer” during those times when I have complained on this blog about all my issues. I certainly didn’t mean to make anyone sad on my account. My desire is to be a light that always reflects my faith and love for Jesus, whether I’m on the mountaintop or in the dark valleys of life.

I WILL SURVIVE!

Hope Takes Flight

A mother’s love

I don’t believe in luck or coincidence, flukes or karma. I believe in Divine Providence. I believe in a God who is not a spectator in our lives, but one who is intimately involved in each and every moment that we live and breathe. God has plans for us, plans for our good (Jeremiah 29:11). This God who loves us with a love that our puny, human minds cannot even imagine or perceive, is constantly using opportunities in our everyday life to enter into our minds and hearts, in order to make us aware of His presence and love.

This morning, I was feeling pretty good as I grabbed a cup of coffee and my prayer materials, looking forward to what God may have to say to me while I relaxed and, hopefully, found some peace in His holy presence. As I read through the scriptures of the day, I was a little distracted by the concerns of family and friends, and couldn’t stop myself from interspersing prayers for them in the midst of my contemplation. It was all good; I felt God understood and was listening attentively to my intercession for their needs.

As I sat, quiet and still on this lovely morning, in company with the Creator, watching my English bull dog chase the shadows of the birds at the feeders, and petting my sweet rescue, Rosie, who was lying by my side, I heard the sound of the Purple Martins calling to one another and glanced up to see a group of about 12 of them soaring and gliding high above the tall trees near my Gazebo. I manage 26 nesting gourds for the Martins who return every year to raise their young. The month of June is the time when all of the fledglings from the gourds are at different stages of learning to fly and hunt from their doting parents. It is so wonderful to witness new life unfolding in the natural world.

Joy filled my heart as I watched the parents place the fledglings in the tallest tree tops, where they would be safe. The fledglings watched mom and dad soaring and gliding, coming back to them every now and then with a tasty tidbit to share. All the while, as they watched, the babies were being trained in the art of how to hunt for bugs, (Martins only eat on the fly-no seeds for them), and the proper way to fly. Gratitude filled my heart as I watched the show, knowing that it was presented by a loving God, just for me. No, I don’t believe that it was luck that the Martins chose the two trees within my personal viewing area from the patio, out of all the trees on my 14 acres and the 80 acres of forest behind me, to feed their young. This extraordinary occasion was an embrace, an invisible kiss, an “I love you,” from my personal savior. Hope and love soared in my heart and I felt as if I was flying just as high as the birds in the sky. That is the way the touch of Heaven, a special moment of recognition of God’s love for me, always makes me feel.

At long last I am beginning to feel better, and with the end of chemo for now, the expectation is that brighter days are on the horizon. It’s amazing the change that feeling better does for one’s psyche and outlook on life. Looking back, I don’t know how I maneuvered through the challenges of the last five and a half months and still remain relatively sane and whole in body and spirit. No, that’s not true, it was my faith and the support of loving friends and family that gave me the strength to power through the most difficult of times.

My frame of mind is righting itself. As my body heals from the onslaught of poisons it has endured, so my outlook on the future is improving. I think it began yesterday as I wearily drove to get my weekly blood test at the cancer center. I was listening to the country gospel hymns station on Pandora when “Tomorrow” came on the playlist. What?! I’ve listened to this station for years and NEVER heard this song on it before. Grumpy and miserable from a week and a half of chemo trauma, it was just what I needed to hear. Yep, I think you may have guessed what I was thinking – it was a God-send. Singing along with the song, hope took flight!

TOMORROW

I am blessed to have had many God moments in my life. Remembering those moments bolsters my lagging faith when the going gets rough. They are undeniable testaments to a loving God whose existence, companionship, and omnipresence is a certainty to me – no matter my circumstances.

My first encounters with God sparked a need within me to try to put to words how they made me feel. This is a poem I wrote after a moonlit walk with my now deceased basset hound on a freezing winter night when the sight of the star-studded night sky touched my soul.

THE TOUCH OF HEAVEN
The touch of Heaven comes to us in silence
So fleeting that we may not notice it
But it’s there despite our imperception
That feeling of complete and utter bliss

It comes upon us in a millisecond
When we kiss our precious ones hello
And other times when Heaven seems to beckon
The sun and sky put on a dazzling show

In the moment, we may hardly notice
Our spirit’s grasping for the world unseen
Its reaching and its yearning and its hoping
To be touched by that great Godly Being

When recognition slowly dawns upon us
Our eyes are opened to the one above
The knowledge that we’ve always been together
And that feeling of completeness is His love

Waiting for the Light

It seems ironic that when I am so close to the finish line my strength and determination have weakened, just like my body. This last chemo has done a number on me for sure. Each chemo, with all the issues I’ve had, has been worse than the one before so it should have been no surprise that this last one was going to test me beyond my endurance. Maybe I’m just tired of fighting to stay strong, to stay positive, to keep hope in my heart. But, when you feel so horrible that living is like slogging through a quicksand mine field with a hundred pound back pack on your back, it saps your desire to fight, even though you know you WILL feel better, eventually. But, eventually is not now, I want to feel well now. I cannot even begin to describe how I felt yesterday, but, I’ll try. The weekend after I finish taking prednisone is always awful. Each part of my body feels as if its weighted down with thousand pound weights. My head and brain are the heaviest, I cannot seem to think straight and I have no desire to think about anything. The weight of my head makes it difficult to keep it from listing on my shoulders when I stand up. The only thing I can do is lie down. It’s either lie down or fall down – that’s my choice.

The fluid is pouring out of my body so I must gather enough strength to get up to go to the bathroom. I drag myself back and forth. I’m stubborn so every now and then on my bathroom walk, I force myself to walk out to the patio and sit there for a few minutes, hoping to cheer myself up. I can’t sit for long and instead of cheering me it depresses me – I want to walk around my yard! Back to the sofa where nothing interests me whatsoever. Everything on TV seems so silly and shallow, or nasty, or hate-filled, or just a waste of time to even contemplate. Books take brain power in order to keep up with the story line – so reading frustrates me. Though I do try to read – but nothing too heavy. I have a few cancer books and articles people have given me, and I’m sure they are filled with great information but I cannot even coerce myself into opening the first page of those books. Maybe I’m not ready yet? I don’t know when I will be.

Last night, as on many nights when I’m in the shower, feeling drained and depleted, weeping in despair, I spoke to my God as I let the hot water pour over me, praying for relief of my bodily ills, praying for courage, strength, and a deeper faith that cannot be shaken by the physical, mental, and emotional challenges I’m experiencing. God is with me during those times, I sense His presence and His love for me, even when He doesn’t seem to be communicating to me. And, that is enough, it’s enough. It’s all I have to hold onto that gives me strength to carry on when I just want to lie down and never get up again.

These are the real moments of the cancer journey. They can’t be sugarcoated or glossed over. They come and they go. They come when I’m weak and tired or sad and lonely, or irritable or mad. When you feel bad or your emotions are twisted up in knots, the world seems gray, as does everything and everyone in it.

Trying to think positive is sometimes elusive. There is so much that is unknown about my future. There are no guarantees in life and certainly not with this disease. Taking it one day at a time is the only way to survive it. When I get too far ahead of myself, fear and worry set in.

It’s been a downer week for me and I’m not going to put a happy face on it. Sometimes, you just have to admit what IS.

But, I won’t be down for long I hope. Soon as I start feeling better and begin getting out and about more, all will be well. I hope, I pray, I cling to Jesus, I surrender to His holy will.

So Close and Yet So Far

The anxiety of getting through my last chemo was tempered by the knowledge that this was going to be my last chemo! Yay! Gearing up for chemo day is always so stressful but I was eager to get it over with, and sort of excited about “ringing the bell.” On two of my other infusion days, I had heard the claps and cheers when some lucky cancer patient got to “ring the bell” which signaled their last day of chemo. So, I started out in a good mood and I was ready: lidocaine numbing my port – check, port not flipped over – check, mom’s lucky blanket covering me – check, hubby by my side – check; all systems GO. After I was settled in, I sent a picture of myself in the chemo chair to all my supporters who lovingly texted me best wishes and words of encouragement.

Reaching out to others during cancer treatment is the most important thing a person can do for themselves. Actually, whenever someone is going through any kind of crisis it is crucial to reach out to others. There is no need to go it alone. People want to be there for you, but sometimes, they are hesitant to “intrude” or “bother” you, thinking you may need space, or they just don’t know what to say. Reach out. Reach out when you feel low, or lonely, or sad, or hurting. Talk it out with a friend. Let them love you, let them make you laugh, let them tell you their troubles, let them console you, ask them to listen without fixing you, ask them to listen to you cry and rant and rave. Then, thank them for being there for you and for being your friend. And, if you don’t have a friend, go out and make a new friend. I find that most people are naturally kind. When I can go out and about, I meet the nicest people everywhere I go. I smile a lot and talk about my bald head (which is the elephant in the room) and my chemo brain which usually breaks the ice and starts some very interesting conversations, some of which very often lead to some deep sharing by complete strangers. The point is that being around others is healing to both body and soul. Don’t try to go it alone. People do have their own lives, so as your treatment goes on they may seem to have forgotten about you. Don’t let it hurt your feelings – they may have a busy life and concerns of their own. But, don’t let it stop you from reaching out to them – it’s a win-win for everyone.

Back to chemo day, which unfortunately, did not go well. I had my usual reaction to the Rituxan and all that comes with it – you’ve heard it all before. But, my friends were there for me, which made all the difference. I texted them all my woes and they commiserated with me. Their presence, even by phone, lifted me up and gave me strength. One of them even made me chuckle. I was texting our group, complaining that the Ativan had not kicked in to mellow me out when one of my friends texted me, “Laughing out loud at your writings.” I looked back at my texts and they were jibberish. I was so “out of it” I didn’t even know it. Then, I had to laugh at myself. Having people you can count on – priceless! My only disappointment that day – I didn’t get to ring the darn bell. By the time I was ready to leave, after all the drama I gave the poor nurse, I suppose she forgot about me ringing the bell. I remembered on my way out the door, and for just a second I thought about going back in, but I was so ready to get out of there, I told my husband, “Oh, let’s just forget it!” It had been a rough day.

It seems like forever, but it’s only been four days since chemo. This is the week the Prednisone does crazy things to me. Monday was chemo day, by Wednesday I was truly manic. Having gotten very little sleep on Monday and Tuesday night, I woke up like a house afire on Wednesday morning, feeling mad as hell. Why? I have no clue! I was mad because I couldn’t sleep, because I have cancer, because I haven’t been able to clean my house like I want, or take a walk, or work in my garden, or play Pickleball with my friends, or sing at church, etc. I hated my puffy, steroid, moon face; my eyebrows and eyelashes which are non-existent, my bald head with it’s few broken hairs sticking out here and there that make me look like a sickly cancer patient – which I am! I looked at my husband who was sitting at the counter, calmly drinking his coffee and scrolling on his Ipad and I didn’t like him either. I made a very firm statement to him that I was going to eat an egg and then take the hated Prednisone pills – along with the 8 other pills I despised having to take. Sensing my mood, he quickly finished up his coffee and retreated to the barn for the rest of the day, which was probably a very good idea on his part.

Downing the egg and the pills my irritability level was at its peak. Looking around, I noticed all the things in my house that I hadn’t been able to do these past few months and decided I HAD to clean it – ALL of it!  I cleaned from 9 a.m. until nearly 7:30 pm.  The entire time I was cleaning, I was furious.  Looking back on it, I was a little crazed if I must say so myself.  It was as if the dirt was my enemy.   In the three bathrooms, I used a toothbrush on the grout and got on my hands and knees to scrub the floors, I vacuumed all the carpets and spot cleaned where it was needed, dusted all the furniture in the house including the fans and light fixtures, cleaned all the floor moldings before I mopped the tile floors, then wiped down all the doors in the house. 

I did stop for 30 minutes around lunch time, in the middle of my house cleaning – to join the online Lymphoma midday chat group. I was hoping the other cancer patients in the group could calm me down.  But, the chat only made me more nervous.  Most of them have the same cancer I have and they talked about relapses and how the chemo didn’t work for them and how they were on new trials – then I started stressing about my upcoming pet scan and what was in MY future.  I left the chatroom early and got back to my cleaning. They were NOT helping.

Every now and then when I was working I just wanted to scream and cry, thinking about my cancer and what was to come next. The doctor had told me I may have to have radiation if my Pet Scan still showed cancer, and that regardless, I would have to have two years of chemo every two months for maintenance with Rituxan – the very same immunotherapy drug that I am allergic to. I managed to pray my way through those worrisome thoughts and gather myself together, using physical labor to block out the negativity. It felt almost like I was having a nervous breakdown at times!  Maybe I was. Praying as I worked calmed me down and got me through whatever that manic “episode” was.  Praise God for that!  Still wired at 2 a.m. I finally had to take a Valium to get to sleep. That was yesterday.

I slept for 6 hours which is a good night’s sleep for Prednisone week. Thank God I woke up feeling pretty normal. I took the dreaded pills again, then waited for the impact. Nothing happened. In fact I was tired. I did manage to play fetch with Rosie for about 10 minutes which made her very happy, then we sat on the sofa together for prayer time. I felt so weak and tired I could not keep my eyes open. Thinking I would rest for just a few minutes I closed my eyes and woke up six hours later. I suppose the mania of the day before had taken a toll on me. Truth is, I just never know how I am going to feel from day to day. The medicines can’t always be counted on to have a certain effect on my body, mind or emotions – I have no clue why this is. You just never know what each day will bring, which infuriates me. I like to have all my ducks in a row. I do not like surprises. I wonder, “What is God teaching me in this experience?” “What am I supposed to learn from all this uncertainty?”

As I sit here and ponder those questions, I realize that actually, my situation does have a lot of clarity. After all, I know that I have cancer, and that there is a plan in motion to stop its progress. Most people in the busyness of their lives never think about or plan for the tragedies of life that can happen unexpectedly. But, I have a diagnosis, I have time to think and plan and make changes in life for the better. First, I have to trust my doctor, follow his advice and go with the flow of this disease, wherever it takes me, for however long I have. I’ll keep living, looking for the blessings in life; I’ll keep fighting, even though it’s often painful; I’ll keep planning, enjoying my family, friends, and ministry; I’ll keep praying, trusting in God’s love and mercy; I’ll keep trying to be a better person, following in the ways of Jesus so that one day, I will meet Him face to face in all His glory and be with Him forever.

At this moment in time, I feel blessed to be in the Potter’s hand, waiting to be molded and melded into something new. There is comfort in knowing that loving hands are shaping me. I’m looking forward to a new beginning, wherever this journey takes me. I am ready to downsize the stuff in my life and increase those moments of tending to nature, giving of myself, sharing the things I have, and loving to the fullest.

Down with negativity!

It’s a marathon, not a sprint

This trek through cancer treatment is like a nightmare expedition that won’t end, filled with unwelcome surprises and unexpected pitfalls. I have to keep reminding myself that I am almost at the finish line, at least for this leg of the journey. But, I can’t help looking back at all I’ve gone through, and looking forward to the obstacles that stand between me and the elusive beginnings of better health and wellness. The downward spiral I have experienced over the last few months has debilitated me in mind, body, and spirit. At the beginning of my cancer treatment I was able to push myself beyond my limits by sheer determination and will. But, as time has gone on, my body has steadily grown weaker and it refuses to obey my commands, overruling me on all accounts when I try to force it to do what it doesn’t want to. I’ve gotten so used to losing this battle of wills that it frightens me.

This morning, for the first time in over six weeks, I decided that enough was enough and I was going to take my dog for a walk to the end of our road, even if it killed me. Walking Rosie down the road, taking in the sights and sounds and nature, has always been the highlight of my day. Well, it didn’t quite kill me; but, I only made it halfway down the road before I came to my senses and turned around. I wasn’t even able to enjoy the walk because I was too focused on putting one foot in front of the other, convincing myself with each step not to give up, that I could make it to the end. I couldn’t – my body said, “No!”. When I turned around and started home, Rosie looked at me as if to say, “What is wrong with you, you used to be so much fun?”

The frightening part is that I am losing the desire to do things because I have no energy. I am giving in to my body’s weakness and accepting its dictates all too often. I’ve learned from past experiences that when I try to overrule it, it doesn’t go well for me. I think I understand now why people give up on cancer treatment. If I had more than one more treatment to go, I don’t know how I would convince myself to do it. I suppose I could if I had to, but, only by the grace of God and His strength to uphold me. I tell myself this journey is a marathon, not a sprint. When my spirits flag, God speaks to my heart with words of scripture that give me courage, and help me to keep going.

This past week I had guests at Serenity House. Just knowing that they were staying there and seeing them every now and then walking in the gardens lifted my spirits. It brought to light how much I miss being around people. This forced isolation is another part of treatment that is difficult to endure. Especially if you are a people person like I am. People need people! Community is so important. Just the few times that I met up with my guests and talked and laughed was a healing experience for me. It makes me think of all the shut-ins, elderly, and people who are ill that have no one to visit them, no one who even calls them. The texts, calls, and visits I get from my family and friends mean so to me, especially on those days when I am sick, lonely, or depressed. When I get better, I am definitely going to make a special effort to reach out to those people, to volunteer my time to be there for those who need someone to listen to them, someone who cares.

After I came in from my failed walk this morning, I sat in my recliner, dejected and feeling sorry for myself. The window where I was sitting overlooks my back patio. There is an abundance of flowers I’ve managed to plant over the past few months. Just a few every now and then when I’ve felt well enough, and now, they are blooming profusely. Gazing out the window, I noticed a lizard scurrying from one potted plant to the next; then, it hoped off and ran all the way across the patio and up a post to reach the tall heights of the wisteria filled arbor. It seemed to be on a mission of sorts. I had to smile at its antics. My many colorful garden wind spinners were gaily twirling in the morning breeze. The long, delicate fronds of the hanging ferns were also swaying gently in the wind. Here and there bees and butterflies were sampling the nectar of the penta and lantana flowers; they seemed inclined to eat on the run, hopping from flower to flower. In the distance, I could see the blooming magnolias and Crape Myrtles, and the day lilies and fragrant gardenias in the gardens around the gazebo.

The garden setting soothed me, and as I sat there I felt a sense of peace wash over me, a calming of my spirit. Sitting in the silence and the stillness, looking out at the beauty of nature opened my heart to how blessed I am. Even cancer has, in some ways, been a blessing. It has certainly opened my eyes to what is most important to me in this life – my family, my friends, and my ministry. It has helped me to be thankful for the little things in life. Just the other day I was so happy that I was actually able to vacuum for 10 whole minutes without getting tired or my heart racing. Each chore is a victory when I can get it done! Planting one plant, pulling a couple of weeds, taking short walks, cooking a meal, changing the sheets on my bed – I’m so grateful when I can do these things. I’ll never see life the same again. I’ll never take my health or anything else for granted ever again.

It is in those quiet, still moments when God is able to reach into our heart and mind and help us to discern life in a new light, giving us insights that melt and mold us – transforming and creating us anew. That is why making time for prayer or just turning off the noise and opening our hearts to listen to God in the silence, even if just for a few minutes, is SO important. I’m reminded of a poem I wrote many, many years ago on my first directed retreat, when I was new to sitting in the silence with our Lord. It was a life-changing experience for me. This is the poem I wrote after one profound day with Him on that blessed retreat.

SANCTUARY
Time alone to sit and pray
To listen to what God will say
No words are whispered in my ear
Only words my heart can hear
I breathe in God and breathe out me
It isn’t something you can see
The comfort, the peace, I can’t explain
I feel uplifted to another plain
Where God is waiting to fulfill
My hopes, my dreams, if it’s His will
No matter what His answer may be
I know He wants the best for me
He lights my path with His Word and His Spirit
I hear His call as He urges me near it
Embraced by love, I have to go
God waits at the end
Where the path starts to glow

Waiting for the Light

I was so hopeful that round 5 of chemo would go better than the previous rounds. I thought I was prepared. I had met with my doctor the week before and told him of my concerns about a repeat of my allergic reactions to the Rituxan chemo drug and to the Benadryl. He assured me he would give instructions to the chemo nurse who he would make sure had the Ativan at the ready just in case I needed it. He was doubtful that I would have another reaction to the Rituxan – he claimed most people’s body got used to it after the first chemo. But, not my body, so far at least. I wanted to believe he was right and this time, I would sail through the chemo infusion. Alas, my hopes were dashed.

I settled into the chemo chair, feeling pretty good. They had put me in my favorite chair by the window, where I could look out at the sky or watch the cars go by on the busy street. It was a lovely sun-filled morning and I lifted up a prayer that all would go well. I gathered all my things about me as I waited for the nurse to come connect my port to deliver the chemo. Before leaving the house, I had slathered my port with Lidocaine gel and covered it with saran wrap – this numbs the skin above the port so that it doesn’t hurt as much when they puncture it to connect the tubes. When he arrived the nurse praised my liberal use of the gel saying most patients don’t use enough. “Are you kidding?” I chuckled, “I learned that lesson the first time I came in for infusion and I’ll not make that mistake twice.” He started feeling around my port and looked a little puzzled, I could see that there was something he needed to tell me but didn’t want to because he sort of hemmed and hawed and then he said, “This is really rare, but sometimes, the port can flip over and I’m afraid that is what has happened to your port, it’s flipped.” What!! My heart skipped a beat and my eyes nearly popped out of my head. What!! So much for my hopes of a good day. “Don’t worry,” he said, “I’ll call upstairs and see if one of the doctors can come down and try to flip it back over right side up.”

He left to go call the doctor and questions started running through my mind at lightening speed. Is this going to hurt? Are they going to numb the area? What if he can’t get it flipped? Will I be able to get my chemo and what happens if I can’t? I was frantic on the inside but trying to be calm on the outside. A few minutes later the nurse comes back with good news, my doctor’s partner, whom I have never seen before, will come down and flip the port; he assures me this doctor knows his stuff about flipping ports. This made me feel a little better.

The doctor’s assistant was the first to arrive, reassuring me that he would be along in just a minute. I had to do a double take when I saw the man walking up behind her, he had thick, long, dark hair that seemed to stand out around his head and a long beard that matched it, multi-colored print tennis shoes on his feet and fingernail polish on his nails. He looked like someone out of a movie scene that just might be the life of the party. But, he didn’t look like a doctor, which freaked me out! He WAS the doctor, though, and I remembered I had heard that he dressed in costumes to keep his patients at ease. “Okay then,” I thought to myself, “trust this doctor.” When he started poking around with the port I couldn’t even look, and I was sure that there would be a great deal of pain, but, within a minute or two he had flipped the port and gone on his merry way. Praise God for that!

At first, I was hoping against hope that I wouldn’t have a reaction to the Rituxan, but, I did and then when I was given the Benadryl, I had a reaction to that too. Thankfully, the doctor had instructed the nurse to give me Ativan as soon as it was needed, which he did, and I was able to rest comfortably for the rest of the hours of infusion. Five chemo sessions down and one more to go, whew!

With everything I’ve been obsessing about and everything my body has been going through during these chemo treatments, I haven’t even had time to think about my mortality or what happens next. I suppose that is a good thing. That will come after the treatments, I’m sure, beginning with the Pet Scan to see if the chemo has worked for me. God has given me the grace to learn to deal with one thing at a time, which lessens my worries about all those other things and people in my life that I was obsessing about before the cancer. Believe me, this has been a great blessing!

Speaking of blessings, my husband has stepped up to the plate big time. If you are reading my blog, you know that my garden is at the top of my list of my concerns since I can’t care for it like I normally do. Hubby has been working himself to a frazzle all month keeping up with not only his usual lawn work but with all those things that I used to do in the garden: pruning, weeding, spraying, trimming, etc It is way too much for one person but he is doing a good job. My son has also been helping when he comes on the weekends. They know how important my garden is to me, and their love for me shines through their work on my behalf. Having the love and support of family is so important when you are going through a debilitating illness. Their care and concern for me has bolstered my strength when it is flagging and lifted my spirits when I get depressed. I cannot imagine how difficult it must be for those individuals who do not have a network of supporters to help them. One of the things I will be taking away from my own experience with this journey is that I want to be an advocate and supporter for other cancer patients by volunteering at the cancer center when I am well again.

Even though I have only planted a portion of the flowers I usually plant in the spring, with all my husband has done and the flowers I’ve managed to plant, the gardens are flourishing. Those times I was out planting, even if it were just for an hour or two,were the happiest of times. The entire process of loosening the soil, mixing in the nutrients, tenderly moving the plant from its confinement of the small seed pot and placing it in a larger pot or in a spot in my garden bed is such a nurturing experience. I know I’ve said it before, but it makes me feel as if I’m helping God to make the world a more beautiful place. And, if I can feel such joy in the growing and nurturing of plants, how much more does God’s love for us unfold as He continues to create and uphold all the people and living things in our universe? I ponder these things as I plant and feel God’s presence in those moments; it gives me great comfort.

There is the beginning of anticipation stirring in my heart as the weeks move forward to the time when chemo treatment will be over. Nothing has changed, things haven’t gotten any better, but I’m learning to deal with my issues better. For the most part, at least now I can pretty much anticipate what will happen to my body and when it will happen during the 21 days between each chemo treatment. I know what medicines to take for each ailment and what they will do to me and for me. So, I am not quite as frantic all the time as I used to be. This is another blessing that has come my way. As I write this I realize I’m in a good mood this morning! Woo Hoo! That is amazing!

I woke up at 4:00 a.m. this morning. In the past five nights, I’ve slept a grand total of 18 hours. Thanks for nothing, Prednisone! But, I’m not tired, yet. That will happen today, along with dehydration and exhaustion that will last until just before the next chemo. But, right now, this moment, I’m good. Praise God! When I feel bad in the next coming weeks, I’m going to drag myself up off the sofa, go outside and sit in my beautiful garden, watch my dogs chase squirrels, take it all in, count my blessings – and open my mind and heart to what God has to say to me. Of course, this reminds me of my mom’s favorite song, In The Garden – enjoy!

High Hopes

Day 10 of chemo round 4

Lying in bed this morning, exhausted from another night of broken sleep caused by pain throughout my torso, I happened to glance out my bedroom window at the bird bath that is usually filed with fresh, clean water. Empty, it was empty! At first, I couldn’t believe my eyes; had I been so sick that I forgot to clean and fill the bird bath? For anyone who knows me, they would be as shocked by this fact as I was. My duty to what I consider to be my animals: not only my pets but also those native creatures who happen to live or visit my property, is always one of my top priorities – no matter how sick I feel. Watching the birds splashing around in the bird bath first thing in the morning is the way I like to start my day. Seeing it devoid of water or birds spoke volumes to me about how low I had sunk since chemo day. Lying there I reflected on the past two weeks or so.

A few days before it’s time for the next chemo treatment, I finally start to feel better. I’m able to somewhat taste the food I eat, and I feel good enough to do a few things around the house. This is also the time when the dread of having to go to chemo for the next round begins. I don’t want to feel bad again. I get so anxious thinking about chemo day and how things will go and the things my body goes through in the aftermath. My mind replays every trauma my body has had to deal with over the last few months – I call it chemo PTSD. All I want to do is get in my car and run away so I don’t have to take any more chemo. But, there is no running away from this cancer or from the chemo treatment that will, hopefully, cure it.

The night before chemo I’m always in a dark mood, and this time was no different. Many times during the night, I was awake, thinking of what the poison would do to my body and all the ills I would experience for weeks, wondering if there would be yet another “surprise” complication or side effect.  Praying for courage, I managed to drift on and off, awakening every hour, looking at the clock, counting the minutes till I must leave to go to the cancer center.  By 5:30 a.m. I decided I might as well get up because I was not going to get any sleep. After getting dressed and packing a bag with all the stuff I need to bring to spend the day at the infusion center, I grabbed a cup of coffee and sat in my recliner. Looking out at the dawning of a beautiful day, the bright green color of the dewy grass, the budding leaves on the trees, and the colorful flowers, all I could think was that I didn’t want to go, I wanted to stay home. Panic and apprehension about the coming day overwhelmed me. I didn’t want to go to go to the cancer center or get my chemo treatment, but I knew I had no choice in this matter.

Resigned to do what I had to do, I picked up my Give Us This Day book and began reading  the scriptures of the day.  The readings were from the Acts of the Apostles 2:14,22-23. They were so poignant for me, giving me the nudge towards hopefulness and the determination to conquer my fears of chemo that I needed.  Reading the words of King David, “I saw the Lord ever before me, with him at my right hand I shall not be disturbed.  Therefore my heart has been glad and my tongue has exulted; my flesh too, will dwell in hope…you fill me with joy in your presence.” I felt propelled towards standing in faith, with renewed hope for a future that would be free of cancer. But, I knew that I had to do my part and conquer my fears. There was a song that my mom used to sing to me when I would say I couldn’t do something that began to play in my head. Frank Sinatra sang it in an old movie. The name of the song was “High Hopes.” It went like this, “Just what makes that little old ant think he can move a rubber tree plant, anyone knows an ant can’t move a rubber tree plant, but he has high hopes, he has high hopes…” That’s what I was feeling after I read the scriptures, I had “high” hopes.

Walking outside with the dogs before I left, I stood in the midst of my flowers, the cool spring breeze chilled me a little but I reveled in it, the birds seemed to be everywhere, singing to me in boisterous abandon, flitting here and there between the trees and to and from the bird feeders.  It was a glorious morning and I was not going to let cancer make me sad on a day like today.  I thanked God for opening my eyes to the beauty that was all around me and for helping me to overcome my fears once again.

Unfortunately, chemo day was not good. Following the advice of the doctor’s assistant, I took Benadryl before I left home, because in the past, I had such a bad reaction to it when they gave it to me through my port. But, the chemo nurse had no choice but too give it to me intravenously when I had another reaction to the Rituxan, just like the last three times.  My teeth started hurting and my gums and throat felt as if they were on fire.  As soon as the nurse pushed in the Benadryl, I felt anxious and my heart started beating a hundred miles an hour and my body started twitching like electric shocks going through it.  It is an awful feeling when you can’t control your body.  It seemed like forever that it took the nurse to get the okay to give me Ativan to control the reaction to the Benadryl.  It took a while, but I finally got some relief and managed to rest for the remainder of the time I was at the cancer center.

I have been sick with one thing or another since the day of chemo. I’m exhausted from not sleeping. I feel unwell in too many ways to name. Every effort I make to do anything causes my heart to beat erratically.  Going outdoors has been, more often than not, out of the question, because I feel as if I might pass out if I walk for more than 5 or 10 minutes. Not being able to walk my dogs on a regular basis as they are used to makes me feel so guilty. When I can, I walk them for just a few minutes at a time and stay close to home. It takes every ounce of determination and energy I have to do it.  Though the effort gives me a bit of energy because just being outdoors in nature – the spring weather, the sounds and colors, the birds and butterflies, everything about it speaks to me of God’s love and care of me and I find peace in His presence. 

The ups and downs of this illness is depressing me.  I have to be so in tune to my body’s functions, to the medicines I need to take for each new problem: the constipation, exhaustion, dizziness,  inability to sleep, anxiety, stomach problems, problems swallowing,  queasiness, nausea, just all around feeling sick ALL the time – takes a toll on my psyche. The picture below says it all. This has been my position for the past two weeks. There is no sugar coating what cancer does to you. No use trying to make yourself look pretty because you truly look and feel haggard and depleted. In the beginning, I used to try to at least paint my naked eyebrows on and put a little color on my lips when I went for my weekly blood work at the cancer center. But, lately, I’m too sick to care about how I look, as are most of the people who are as naked headed as me from chemo. Covering my head with the chemo cap is like wearing an electric heater on my scalp – unbearably hot even on a mild day! I asked my husband if he thought I could start a trend at the cancer center by taking the cap off and just going “au naturale” with my bald head – like I do at home. He didn’t answer – poor guy was probably considering which answer would be the right one. I might have the courage to flaunt my bald head if other ladies at the cancer center would do it; but so far, I haven’t seen any brave souls. Cancer takes so much away from a person, especially their dignity, I suppose a tiny bit of pride in oneself is all that we cancer patients have to cling to.

My faithful friend and comforter never leaves my side

It has become hard to properly think clearly or stay focused long enough even to watch television or read a book.  I’ve lost interest in pretty much everything except obsessing about my garden and the weeds that are growing astronomically each and every day – marring my landscape.  The fact that I’m too sick to do anything about it keeps me so distressed.  I WANT to go out and work in my garden.  I try, but I’m so weak that I can’t even pull a few weeds without getting light-headed and weak-kneed.  It’s so frustrating!!!  Now, when I take a walk, I very often focus on those weeds and how fast they are growing and I yearn for some energy, I want to dig in the mud (which the nurse tells me I am not allowed to do because of germs).  It makes me want to wail as loud as I can!  I used to be so strong and I’m feeling weak and useless.  In the past, I was able to work for hours in the heat, pruning and trimming, planting and watering – loving every minute of it.  This inaction is like being in prison – sitting around in the house is torture for me. The emotional toll is beginning to get to me.  It is even hard for me to pray some days.  I read the scriptures every morning, and though they may talk to me in the moment, the effects do not last as they usually do. There is no lasting peace amidst the turmoil of my weakened state.  The doctor says there is such a thing as chemo brain, and that must be true, because my focus is not as it should be and my short term memory is slipping.  I feel like such a whiner!!! This is NOT me.  Where is the positive, hopeful, always joyful person I used to be?????

Cancer has taken so much from me, but I’m fighting with all I have to stay strong.  It makes me so angry to think that this did not have to be, that my love of gardening may have caused this cancer because of all the Round-Up I’ve sprayed over the years.  If anyone reading this is still using Round-Up, my advice would be to you what my doctor said to me, “stop using it!”

How ironic that the one place that soothes my soul, my garden, and my desire to keep it free of weeds and make it a place of beauty by spraying the weeds with Round-Up would ultimately be harmful to me. Ever since I was a child the natural world has been a place of solace for me. Then, when my husband and I moved to the country, God spoke to me in nature and I met him on a more personal, intimate, spiritual level.  My garden is more than pretty flowers and shrubs to me, it is a doorway into that spiritual realm where the divine meets humanity, where God and I connect and where I feel as if I am working alongside Him in creation. And, in so doing, I am creating a place not just for me, but a place where others can meet God as I have, where there is  beauty, solitude, quiet and peace.  My garden is like a portal into another world where God is always waiting to spark a conversation with someone, where every person who enters is better able to hear His voice clearly, and feel God’s love more deeply. I cannot wait for the day when I ring the bell at the infusion center after my last treatment is over and done. My garden awaits my tender loving care and my soul longs to be in the midst of it.