Treatment success

Just so you know I passed my blood test today and successfully received the second chemotherapy treatment in my fourth 21 day cycle of treatments. I decided to post a piece about this success to keep you informed about the treatment ups and downs on that big cancer roller coaster we are riding. You are with me in the front seat and screaming as loud as I am!

Treatment today was definitely a 'high' and the journey to next Monday's appointment will be filled with surprises I am certain. So this is the afternoon after treatment. Let me educate you on what can be perks of a successful treatment. 

First, one IV bag is filled with steroids. The benefits are several. The stye I have been annoyingly entertaining on my left eye for almost two months improves with steroids. Hallelujah! Also, the afternoon of treatment has a 50/50 chance of being a 'stand up' afternoon, and that means no need for a nap. I have enough energy to multitask between sewing, laundry, mopping the floor, and even pattern writing. I feel the most like 'me' and realize that hope does exist.  Double hallelujah!

Second, I had an opportunity to talk with the nurses about what I experienced during the previous week. They listened and with their expertise, they addressed my bone pain issues with the doctor. They also suggested a change I can make to help another matter. Like we added Miralax (which I have already used) to the bathroom cupboard, and it sits in a place of honor. Sigh! Relief! Celebration! If you need to know what Miralax does, text me or ask your mom!

Now remember I said that each afternoon after treatment has a 50/50 chance of being a 'stand up' afternoon? Often - especially after the first treatment in my 21 day cycle - I come home from the clinic and head immediately for the recliner. On those foggy afternoons, I sleep for hours. And then I get up and go to bed and sleep for 8-10 hours again. 

To explain: Benadryl is one of the IV bags in my treatments and Benadryl on any normal day knocks me flat. There must be more of the drug in the first long treatment. The second and third treatments are adjusted drug recipes given within fewer hours.  

I did sleep at the clinic this morning - they had to wake me up to go home - and I must have slept off the Benadryl because by 1:00 p.m., I was raring to go. The steroids kicked in. Woot! Woot!

Summing this up in few words: the roller coaster crawled to a 'high' today with a good second treatment and a wonderful 'stand up' afternoon. Thank you doctors and nurses. Thank you God for this gift of an energy filled good humor day. I will take whatever I can get and be grateful. 

My prayer now is that I have the strength and courage to handle whatever comes during the coming week. Trust me there will be days when I am definitely in a zone that is nowhere on this planet, but I manage and I nap. The roller coaster eases itself into low twists and turns before heading up again and my heart is in my mouth. So I end with this:  God,  please, please, please keep organizing those white blood cells so that maybe, just maybe I could pass next Monday's blood test and have a successful third treatment...without needing another shot.

Optimistically, The quilting cancer girl

P.S. I had a terrific long afternoon and evening in the sewing room!

Claritin and bone marrow

This week I received two shots - on Thursday and Friday - that play a specific role. They are designed to make my bone marrow produce white blood cells. Each time I receive a shot the well-trained nurses say, "Now take a Claritin because we have learned Claritin relieves the bone ache from this shot."

When the shots first started way back in November, I forgot to take Claritin and had no problem. There were no bone aches. I decided the shot did not affect me that way. I was fortunate. I was immune. That was not a side affect from the shot that touched me. Never assume anything.

The last time I had two shots in a row, I did feel some strange body aches, and I did take Claritin, and miraculously, the aches disappeared. Hmmm, I thought. That was easy. I took the Claritin for three or four days as the nurses had indicated and was fine.

Well...and we know that's a deep subject...for anyone who believes they are immune, never take anything for granted. This week after receiving my two shots, I was levelled, and that was with the added help of Claritin. 

You have heard the cliché about being pulled through a knothole. On Friday afternoon it was as if someone was literally pulling me through a knothole and I wouldn't fit so they just kept on pulling until I finally did. And that's no kidding.

The inside of my bones hurt. The inside of my bones ached. The inside of my bones pained me until the outside of my bones were sore and they throbbed and pulsed worse than any aches I ever felt from a flu. For three or four hours, I was flat out and for the first time in my life understood what people mean when they talk about pain. I kept wishing the knothole was bigger so I could fit through it faster.

And then as quickly as it started, it stopped. The aching, throbbing pain was done, and I was depleted. I wondered for a moment if this is the way one feels when experiencing a time warp. Hmm. Not sure I want to try that now.

Yesterday - Saturday - was a do nothing day. I literally could not do anything save manage the bathroom and sleep off and on in my trusty recliner. My husband was a gem. He seemed to understand my physical exhaustion and so we watched movies, three or four of them, and I slept off and on, and he filled me in on the gaps in each movie's story. How blessed I am.

Here we are at Sunday and at breakfast I announced that I was feeling much better so my husband could go about his normal day. Sometimes I just have to do that. I can move around better today even as I realize that too much standing weakens me. So I am doing my devotions, attending church online, and then trying a bit of sewing to keep up my strength. Praise God for my sewing.

Tomorrow - Monday - is a treatment day. I sure do hope my lab tests reveal a proper white blood count because I fear a third shot. I literally do not want to scare my bone marrow or me a third time. Yikes! Meanwhile, with my focus on staying upbeat for the day, I will pop another Claritin and go to church virtually. The sun is coming out!

Steadfastly, The quilting cancer girl

Managing sadness and moving forward

Today is a discouraging day. I have been so 'up' and feeling as though there is an end in sight to this cancer journey. With the changes made to my drug recipe and the news of my clean MRI, I began to exhale and believed my 'normal' life might resume. Just let me be me...and with hair!

Yesterday I went to the clinic. I was psyched for my treatment and...my blood did not pass. There were not enough white blood cells. AGAIN! So home I came. Sigh. Returned to the clinic today for my treatment and once again, my blood did not pass. Double sigh. This time I cried all the way home.

The hardest part is knowing that I went all week and did not get a treatment. You see, each time they pass me on a treatment that puts the length of my chemotherapy up another week. Instead of finishing chemo mid March, now I am looking at the end of March. Give me a Kleenex please!

Am I feeling sorry for myself? Is this my pity party? Yup!!!! This is a struggle that all of us doing cancer treatments must manage. The reality is: we are not in control of anything.

Then I remember that whole thing about perspective and faith and strength. I can move forward and mark this in my journal as another learning experience in the cancer adventure. There are ups and downs...and I'm on a down that feels heavy.

Then I look at the positives. First, my treatments are now moved to the beginning of the week. I so prefer Mondays to Thursdays and am actually happy to be back to Mondays. That's something I celebrate! Woot! 

Second, I am having 'stand up' days where I can think and sew in my sewing room. Thank goodness for sewing and thinking! Today my Indiana sister and I have decided to sew on Zoom and that will get my head back in the game. She's one special motivator. 

And third, my geraniums are blooming!!!! That's a sign that spring is around the corner because they start blooming just as the energy for growth starts flowing once again. Soon we can pot new cuttings for plants in the summer. Hallelujah!

Strange as it may seem, I learn from my geraniums. They are another motivator, keeping me focused on growth and energy. In their own way, they message me to keep on keeping on...just as they do across the dormant months so as to grace us with their sturdy beauty come spring. 

I never thought a simple geranium would pull me out of the doldrums, and yet anything is possible in my life. I prefer growth and energy to sadness and pity parties. So onward, Eileen. Share an encouraging hug with God, and then let's get sewing! 

Hoping to sew some beauties today, this is me signing off: The quilting cancer girl

Perspective

Perspective is a long word, one that keeps popping up in my mindset these days. I have always equated 'perspective' with 'a point of view', and it seems a way of shedding light on approaches or frames of reference that are different from my normal way of seeing things. Dealing with cancer, my perspective is continuously changing. 

There are those trying days when I understand how someone might crawl under the covers and withdraw from the world, leaving life and living to those who have more strength. Day after day, it feels like nothing will improve. No matter what, I am sick. My patience feels depleted, and if it were not for my strong faith, I could give up. 

Then a few 'stand up days' grace me with their presence and time is joyful. I can do puzzles. I can spend time in my sewing room, actually feeling progress happening. I can work around the house. Cleaning feels so normal and routine and good. I do laundry. I empty the dishwasher. I put supper together for my honey. I value those days!

Going to the cancer clinic has become very routine. Every week. I have talked with you about that often. What I want to toss out here today is how the clinic alters my perspective.

This last week, feeling upbeat about stopping that one cancer drug, I looked around at others reclined and receiving treatment. Quietly, I wondered how different their story is from mine. So many appear weak and frail, patiently struggling to be strong in their cancer fight.

I watched one young couple. The husband was fussing over his wife as she received bags of IVs. This couple looks to be in their twenties and could be focused on starting a family. Instead, they are dealing with cancer and its influence over their newlywed bliss. My heart aches for them and yet they maintain a sense of humor and willingness to accept what comes their way. They are strong together.

Next to me sat a woman in her fifties. I had not met her before and, in an effort to reach out in friendship, asked if she was just starting out. I opened the conversation that way because she was doing counted cross-stitch. Many of us at the start bring handwork, and then we learn how the Benadryl puts us to sleep. So, we leave the handwork at home.

Well, her response genuinely opened me to how different her perspective is from mine.  "No I'm not new," she said warmly. "I've been coming every week for six years. I'll do anything I can to stay alive." Talk about strength and patience and faith. How can I possibly complain?

Cancer challenges us in ways we never imagined. It comes to us, overtaking our 'normal' way of doing things and scares us into wondering whether we will survive. 

Fact is, I believe cancer introduces us to a personal internal strength that is deep within our soul. It forces us to look hard at who we are and how we are tapping into that strength as we write our own story. Cancer levels us, humbles us, and teaches us to trust that our Lord will be by our side always.  

Those of us who have known cancer - as patient or caretaker - hold tight to a common bond: cancer cannot destroy our determination to fight the good fight and stay strong...together...no matter the journey or the outcome.  Daily we are here surrounding each other with love, and that makes all the difference. Just remember...I'll do anything I can to stay alive.

Loving you and staying strong, The quilting cancer girl

My oncologist is the best!

Since you've all been in this cancer journey with me from the start, I am happy to share what I call REALLY good news. This is the first time I am actually in the mood to celebrate! Woot! Woot! 

I met at 8 a.m. this morning with the oncologist who was visibly ecstatic that the MRI was clean. When I realized his joy, I was caught up in the moment, tickled to share his openly expressed glee. Like a schoolboy, he was beaming ear to ear!

Then he went forward in conversation to explain that my chemo drugs are a combination of four drugs: T, C, H, P...each standing for a medication with an extremely lengthy name. And, he detailed clearly how they build up in my system over time. It's what he calls the cumulative effect. 

The C drug has been depleting my white blood cells. It has now reached a level in me where it is sabotaging my white platelets and that is not good. My oncologist shared his concern over the situation, frowning and looking very serious. 

Then, as if in celebration, he smiled and announced that with a clean MRI, he would eliminate the C drug and I should be better able to tolerate the rest of the treatments. I couldn't believe my ears! "You shouldn't feel so sick all the time and you won't need any more shots," he explained.

From now on, I repeated, I will receive three basic drugs in my treatments: T, H, and P. Just three! And the drug that has been creating such havoc will be stopped. I almost jumped up and down like a school girl at a football game but chose instead to act my age. He nodded and smiled a cheerful, victorious grin.

Following today's appointment, I got my routine shot for my white blood cells, in order to receive tomorrow's treatment but then no more shots. The white blood cell killer will be left on the shelf to benefit someone else, somewhere, someday, somehow.

I left the clinic office for the long walk down that long hall out to the car, crying the whole way. Good thing I was wearing a mask. God is definitely taking care of me. Such relief to be done with feeling so sick and without energy all the time. What joy to think that I will be more able to tolerate the months ahead! Thank you, God, for helping me find a way back to strength again. I've really missed it and I celebrate our partnership. Now give me a Kleenex so I can clear my head! Talk about a roller coaster ride! 

Ecstatically signed, The I-could-never-tolerate-roller-coasters quilting cancer girl

This is my reality

On Wednesday, January 12th, it was my turn for a follow-up breast MRI, and on Thursday, January 13th, I received a call from the MRI clinician telling me that they could see no signs of cancer. Of course, anyone who hears this is ecstatic and ready to celebrate the end of my journey. I wish I could.

Immediately, I felt very guarded. I needed to hear the doctors take on this positive news. Well, today I talked with the surgeon. She is glad to see that the lump has disappeared and the aggressive cancer I have has retreated. But there are more steps in this process that still need to be considered. While she is cautious, she continues to be reassuring that this cancer is curable.

Despite the retreating cancer, surgery is still necessary.  A lumpectomy will in fact be done to test the tissues in the area where the cancer initially lived. At the same time, two lymph nodes will be removed and biopsied to make absolutely certain they are clean. The surgery will take about an hour.

Before decisions about surgery, we must hear from the oncologist. That appointment is this Wednesday. He will talk about treatment protocols.  I am supposed to start yet another 21 days of chemotherapy on Thursday. How exciting! He will also communicate with my surgeon on Thursday and she will give me a call on Friday about when the surgery may happen.

Now after surgery, there may be radiation. That has not been ruled out yet. And also, every three weeks after the planned chemotherapy and surgery, I will continue with infusions of a maintenance drug every three weeks until next September. 

You can see that this journey is not over. While there are high points along the way - like hearing they can find no cancer - there is still a process to insure that my aggressive kind of cancer lives nowhere in my body. Both my surgeon and oncologist are united in their commitment to make certain I have no recurrences, ever.

So celebrate this good news from the MRI but know that I continue to fight a very aggressive cancer that can hide someplace in me and make a comeback if it is not handled correctly. I must trust that the good Lord continues to work through these marvelous people. They have my back. They want me to live and so do I. Please keep me in your prayers.

Committed to forever, The quilting cancer girl

  

Relationships transform the Infusion Room

I did it! I passed my blood test! They kept me at the clinic today! Did I jump for joy? No. I really couldn't with cancer patients needing quiet but the nurses were pulling for me, and that felt really good. Quietly, I heard verbal celebrations like "you did it" and "congratulations" and "you can stay" and "we have really good news"! I enjoyed the spark of mixed hope and enthusiasm among us. It was really special.

So, while I am announcing that I succeeded at getting my treatment today, I am also sharing how important it is to build relationships with your nurses. They have names: Holly, Sloane, Karen, Kathy, Sara, Stephanie, Penny....the list is long. And it is obvious they appreciate being acknowledged. Often I use their name when I say 'good morning' or 'thank you' or 'goodbye'. Best is they remember me and I am Eileen. I think we're bonding!

Wonderfully, they have their own stories to tell, and they are often willing to share. I pose a question: "how was your holiday", "are you pregnant", "did you watch the game", or "do you like your job"? And while my blood is being drawn or they are hooking up my IV bags, they offer quick answers because as professionals with a schedule to keep, they must keep moving.  I love their  personal input. It feels like we're becoming friends.

I've also learned how much these nurses appreciate a sense of humor. Because of that I sometimes sing a few lines from camp songs after my treatment like "I'm alive, awake, alert, enthusiastic", and I notice these wonderful ladies smile. Then of course, there's my famous  'hallelujah' when something goes really right. That works every time, even in a quiet way.

Stop and think for a moment. When we cancer patients enter these infusion rooms at first, we are afraid, scared, even panicked about what lies ahead. Am I going to live or die? What does it mean to dump all these bags of chemicals into my body? Can I handle this? And the room itself - because of our scare - feels cold and uninviting. 

Take today when I checked in for my blood test and Kathy took my blood pressure, it was high. But she was both reassuring and calming, saying that everyone is anxious and uptight about what is going to happen. "Everyone starts the day with high blood pressure," says Kathy. "Not to worry. It will be lower when you leave." Bless you, Kathy.

What I am saying in this post is that by nurturing relationships with the very professional nursing staff, the infusion room transforms into a warm, friendly, supportive space even while I confront life and death cancer issues. For me, this is a home away from home, translating the cancer world into something I can comprehend. This is the place and these are the people who enable my personal growth through cancer.  Thank you God for the connections I am making and the guides who hold my hand. Thank you. Thank you.