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!

8 thoughts on “So Close and Yet So Far

  1. Prays God that you gave completed the first step in your recovery. Each step gets you closer to a normal life with family and friends. Love and prayers that you continue to move forward in this journey.

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    1. So true Pat. I know when I begin to feel better and get used to the new normal, I will find a more lasting peace. One day at a time. Love you back!

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      1. Thank you Sr. Luisa. Just heading out to get fluids at cancer center and realized my port has flipped again. Keep praying, please.

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  2. Jeanne, Thanks for your latest update. What a journey you are on! I’m praying with you and holding up your weary arms!

    Sr. Luisa ________________________________

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  3. Thankful for the grout !! Even on my best days I have never cleaned like that , you are one amazing woman !!
    My prayers always
    Love you still laughing with you

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    1. I can always count on you to point things out for me and bring on the positivity. I need that, my friend. Thank you! ❤️

      Sent from my iPhone

      >

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  4. Dear Jeanne,

    I am a little late in reading your blog. We had a baptism of our great grandchild and he was precious. I am always amazed how you can do all your housework even when you feel terrible. You give glory to God by your willingness to keep pushing. How wonderful that you kept on going until you could do something useful.

    Can’t even imagine how you have such courage but I see that you did reach out to the sharing group even though it may not have given you hope that particular day. Again, I have to say thank you for being so honest and up front. It helps to give me some perspective. I don’t know if I could be as courageous as you but I would like to hope so.

    We pray for you everyday. I know God has some special plans for you and you will be doing your thing again before long. Will now pray that your PET scan comes out good.

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    1. It’s a struggle. I don’t feel very courageous because I have no choice but to do what has to be done to get through this. Taking one day at a time- plowing through the bad days and celebrating the good ones.

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