A happy ending

Yesterday was the start of my second infusion cycle, the beginning of a three week segment where I get chemotherapy every Monday morning. This first of the three is a heavier load. However, on a good note, I only received 10 IV bags this time where the first time I received 13. 

And other news I learned in a meeting with the oncologist is (1) my chemo will last until about the first week in March and then they will assess the need for surgery, (2) after the surgery chemo will continue once every three weeks into the fall. I am realizing this is a one year adventure that in the happiest of endings may mean I will be cancer free.

There is a third positive piece of information. After examination, the tumor is decreasing. Lord, that was good news. To know these infusions and our prayers are making a positive difference is  right up my alley. I could have jumped up and given the doctor a hug. My husband would have labelled me crazy (because I am a little) and we would have had a good laugh!

I want to share one other thing. In the morning before I went to my chemo appointment, I took my vitals and then did my routine devotions. My blood pressure was up. That seems to be a given on chemo day because I become anxious. Then I read my morning prayer...and I want to share it with you.

It begins with "LET ME INFUSE MY PEACE into your innermost being..."  Wow! This got my attention immediately.  I have believed since day one that God's Love was flowing into me. I came to that myself, and here was a prayer suggesting I am on the right track.

My encouragement to every cancer patient is to accept the same image if you have a faithful belief system. There is nothing as powerful for me as God's Love. (Believe it or not, I think of the street where we go for the infusions as "Love Lane" rather than "Park Club Lane".)

"As you sit quietly in the Light of My Presence", the prayer continues, "you can sense Peace growing within you. This is not something that you accomplish through self-discipline and willpower; it is opening yourself to receive My blessing..."

The prayer ends ..."You have learned to thank Me for hard times and difficult journeys, trusting that through them I accomplish My best work. You have realized that needing Me is the key to knowing Me intimately, which is the gift above all gifts."

Okay. Confession. I cried. Here was my day's sobbing point. They were not tears about chemo. It was more a realization that God connected with me to give me the strength, courage and peace I needed so badly. And you know what? The cleansing and the gratefulness that I have faith was an important part of making this day tolerable. 

I had my infusion from 9-4:00 p.m., communicated with my Indianapolis sister throughout (it's like she sits in the chair beside me), and then I slept a drugged sleep that relaxed me till the end of the infusion. My honey picked me up and we had supper together. Walked my little Claire, and then slept in my recliner till bed at 8:30 p.m. All in all the day succeeded because God infused me with His peace and love and I accepted every drop of chemo knowing today would have a happy ending.

Signed affectionately, The quilting cancer girl

I am my own advocate

There are all kinds of side effects with cancer. There are all kinds of cancer, so the side effects vary from cancer to cancer, treatment to treatment and individual to individual. 

Each one of us is doctored differently. Me? Because I have an aggressive cancer, the oncologist and surgeon decided on chemotherapy first. The goal is to shrink the tumor before operating, arresting the cancer's ability to infiltrate healthy tissues. Sure makes sense to me. I will jump through whatever hoops are necessary to make sure this cancer eradication is complete and total. 

Yes. I have had side effects, albeit relatively minimal compared to some that  are 'out there'. I've had a few digestive issues that aren't so pretty or fun to talk about. I have a sore mouth and chapped lips. However, I've been spared nausea so far. Some mornings, I have been very shaky. It is a tremble that interrupts the journaling which I do on a daily basis. Someday I will read my writing and wonder what old person penned the words! 

My thinking has been foggy or muddy so that I cannot focus or remember where I put things or recall the details of a conversation. They call that chemo brain. Occasionally, it alters my balance, almost triggering vertigo, an affliction I detest. 

Then there is my new experience with reflux. It does not happen everyday, just certain nights, especially those nights when I had hoped to sleep for hours. It hits about 2:00 a.m. and means I am then up and sleeping in a recliner until close to 4 a.m. I hate interrupted sleep. I love to sleep!

Or there are times when the steroids I get on Monday make me fly high with energy for 48 hours. That is awesome because I have a priceless clarity of thinking. But then, I crash and burn on Wednesday, and wonder what Thursday will bring. 

There are days when I am not sleepy, but I am extremely fatigued. There are mornings when I am  desperate to feel normal and afternoons when I thoroughly enjoy normalcy. Contradictory? Yup. But it happens. During those afternoons, I am relatively productive and I can teach a class just fine. Weird.

Yes. My hair is about gone. I was losing it slowly until Thanksgiving. Then it accelerated and now I am almost without hair which means I need to own the fact that I am nearly bald. Sigh.

Worst of all are the nose bleeds. Almost everyday for the past three weeks, I have had spontaneous nose bleeds. The day after Thanksgiving I actually wondered if I was hemorrhaging and wondered if I should call 9-1-1. At that point, I decided to do some research and discovered that nose bleeds can be an indication of low blood platelets. 

Well, you know me, I cruised the internet to learn that if I ate certain foods, I might improve those platelets and cut down on the nose bleeds. So, yesterday and today, I have eaten eggs, broccoli, spinach salads, lentil soup, brussel sprouts, and even liver. Guess what? I have not had a bloody nose to speak of in these two days! Hallelujah! 

Tomorrow will tell. It is the start of another 21 day cycle, and my first in another series of infusions, three weeks in a row. As per the routine, nurses start the day by testing two vials of my blood.  It will be interesting to see what my platelet levels are. Somehow, I think they have improved because I am not so fatigued and my nose is behaving itself.

The point of all this: it is important to be my own advocate. I must assess what is going on and then figure out what can be done to ease the discomfort. That is the one place I feel I can take control. 

I either write on the patient portal asking questions about what I can do or I research possible solutions that are doable on my end. You know, when we cancer patients are at the mercy of drug therapies, we must speak up for ourselves. No one else knows how we feel or what we are experiencing. I take my vitals everyday. I make notes, keeping tabs on me and then I speak up. 

God can help me with the spiritual piece, but physical me needs to be managed so that I can exercise and emotionally stay grounded. In short, I guess it's fair to say: that's my plan and I am sticking to it. I am an advocate for me! Bring on the next infusion. I am ready.

Onward and upward! 

Over and out, this person here is the quilting cancer girl!

 

Blessings Abound

God gave me such a wonderful Thanksgiving. I started with my morning prayers and wondered where the day was headed after that because my hair was in free fall, my head was hurting internally, my nose was bleeding and I was just darn tired. All that within an hour of waking up. Go figure! What I wanted to do was sit in a recliner all day and do absolutely nothing. What a Thanksgiving party pooper!

But then I was energized. I was energized because my youngest son agreed to come in the morning to install a humidifier on our furnace. On Thanksgiving! He was taking his time to help me address the nose bleeds, putting more moisture into the air throughout the house. Come he did. Install he did. We talked and laughed and his presence infused the day with heaven sent love. He is such a dear.

Around noon, three ladies from my Block of the Month quilting class appeared at the door with baskets of Thanksgiving foods: cranberry sauce, pies, turkey, dressing, green bean casserole, muffins, salad, and even flowers. They stayed for a bit and toured my sewing room, getting ideas for their own studios, and when they were gone, I looked at my husband in amazement. 

How could a quilting girl like me be so lucky? How could we be so fortunate as to have a group like these ladies supporting our cancer journey?  Their caring is phenomenal. The bond and chemistry amongst the members of the group is a blessing to me AND to everyone within the group itself. We have each other's back no matter what.

Well, I spent the rest of the day in that recliner, sleeping, watching movies, chatting with family and friends in texts and over the phone. Watched three quarters of a winning Bills football game until bed called me to end my day. And as I settled under my handmade quilt and into my flannel sheets, I was content that Thanksgiving had been okay, despite my cancer and balding head. Thank you God for all our blessings. You sustain me, and for that I am forever grateful.

A New Adjustment

 Losing my hair has been rough. It has been an adjustment. I thought I was handling it well by having my hairdresser cut my hair short. Surely, then, I thought, it would be easier to lose because it would be much shorter. I am finding that it is not easier at all. 

There is a  literal attachment we have to our hair. No matter what we are going through, our hair is a constant. It is attached. It is steadfast. It sees us through anything: rain, snow, wind, growing up, falling down, graduating, getting married, having our children and grandchildren, parties, concerts and funerals. All of life happens and our hair is there. 

My hair was always an important part of my identity because it was red. I was the red head with temper tantrums that my mom did not know how to handle. I was the only red head in my brownie troop; and the only red head in high school English class. Not until college did I notice more red heads around, and that felt good, like I had common ground with more people. 

One of my grandsons has red hair. Because of that, I have always felt we had a special bond. We were red heads together. I've thoroughly enjoyed watching him make a name for himself as he directs his very own rock band. He has character, is passionate about sharing his music with others and builds a positive spirit with fellow band members. He gets noticed for his dedication, enthusiasm, talent and energy as he performs for crowds of people, walking his journey as an amazing drummer. I am so proud of him and the difference he makes to those around him .

Both of us have discovered that we are sensitive about our hair. Maybe that's part of being a red head. I don't know. What I do know is that I am losing my hair. This week I will be bald and, standing in front of the mirror, I face once again my cancer reality. It is an emotional adjustment. I cry as I sweep my hair away. This is the time I look at who I was and wonder who I will become. I'm saying goodbye to the red-headed me and with love, pass that torch to my grandson. 

This cancer journey is a true test of my faith. I have said that I trust God and he will lead me through this, hugging me and letting me know that he has my back - and my head - sheltering me always. So, for the time being, I give Him emotional me and pray for strength. The playing field is levelled and like all of my fellow cancer friends, we join hands in our baldness to tackle what we must, together, with courage and peace.

Signed with love, The quilting cancer girl
 

A 'So good' day!

This was an exceptional day! Hallelujah! I slept seven hours last night without any interruptions: no reflux, no potty breaks, no bad dreams. It felt so good and I was so rested when I woke that I just knew today was going to be awesome.

In fact, I was energized when I got the day started. Did my devotions and then headed for the sewing room to quilt two projects and bind them prior to the afternoon class I would teach. Got both done and totally forgot to take my vitals. Guess that was a sign that something felt better.

Had an appetite for breakfast which was quite different from the past several months. Dressed. Conversed with my wonderful hubby and then headed back to the sewing room to finish my PowerPoint for - yes - the afternoon class. Everything went together well and before I knew it, I was off to teach my class.

Class was enjoyable with lots of chatter about Thanksgiving and projects and plans for December. Had a chance to talk at length with a co-worker before class which again felt so good. On the way home, I called a friend on the car phone and talked my way home. Then the Meal Train delivered hot scalloped potatoes and ham which tasted - you've got it now - so good! How blessed we are.

Just did an evening walk with my Yorkshire terrier, Claire, in the very brisk air that is out there tonight. Chilly and invigorating enough to make me appreciate our  home that is both cozy and welcoming. And now, I'm anticipating a genuine night's sleep so that just maybe I might luck out and have another 'so good' day tomorrow. 

Signed, The very appreciative quilting cancer girl

The Bills, Chemo and Quick Tips

Yesterday was what some might call Silent Sunday. I skipped my entry because I was feeling pretty punk. While I went to church in the morning, I vegged the day away.  I was challenged with dizziness and, almost, vertigo issues. (I absolutely, positively hate vertigo. Just saying!) Couldn't even stand up in church to sing a hymn. Sigh.

My read on yesterday was that I was a walking, whining, premonition of the Bills Game! Knew right away in the morning hours that they were going to be off balance. Then I saw how Indy's Taylor ran through the Bills...a plane landing on a runway and skidding along the field into the end zone. What a mess! My armchair read is that the Bills are excellent when they get a chance to play football. Come up against a team that obliterates them in the running game, everything is one sided and it's not in the Bills favor. (Guess what? I still love the Bills!) Enough.

Today was my final session in the first three chemo treatments. Went well. Was 3 1/2 hours this time around. Wonderfully, this afternoon I am on a steroid high so I do have energy to write this and work on a much-needed PowerPoint for tomorrow's class. 

Made two new friends today: Pat and Beverly. Vanna was there (not from Wheel of Fortune but just as lovely).  The four of us talked a while, until the Benadryl kicked in and then we were sleeping zombies. Just before dozing off, I looked across the room and couldn't help but laugh when I saw yet another patient getting her treatment. Here is a photo. Hippa Laws dictate privacy. I don't think you will know who she is!

My photo above was a poor selfie taken just as my Benadryl bag was a-drippin' away and I was getting groggy. I still have my eyebrows. Woot! Woot!  

For cancer patients, I have a few quick tips. (Just as I do quick tips for quilting classes, I also share tips with you.) If you get sores in your mouth and on your tongue, 2 - 3 drops of Thieves Essential Oil in a 3 ounce glass of water is excellent as a mouth wash. My sores are dramatically better using this. Also, Aquaphor suave (I ordered both of these on Amazon.) is top notch for your parched, dry lips. It is protecting mine from water - like if I lick them - and helps them heal. At least when someone can see my smile, the smile doesn't hurt!!!!

I do take my own blanket to chemo. I've mentioned that before. Right now I am using the one my Indianapolis sister, Donna, made for me way back when. Today I had it turned so I could read her quotes, and saw one that drew me in. It reads, "Concentrating on this pattern reminds me of the love and care you pour into me." How appropriate a quote - although I'm guessing Donna never knew this would be a cancer quilt - because I could say this to God right now.

Every time we gals and guys get chemo infusions, it's like we have God's love pouring into our veins, accompanied by all the love and care of family and friends. This quote is just perfect for today! Thanks and I love you, Donna. This quilt is so warm...in every way. You hugged  me all across the morning.

Saturday Blessings

Saturday and Sunday are my best days. That's because I get chemo on Monday morning, and it runs the gambit of side effects through the week. On Saturday, I like to teach at the quilt shop because my head is clearer. I also work around the house and get my act together for the following week. It ends up a busy day and that feels good.

This morning I was very fortunate to have my son, Drew, blow the leaves off the front lawn. His job is Superintendent of the East Aurora Country Club so he is knowledgeable about outdoor challenges and has the equipment to tackle whatever. This weekend is his first 'off' weekend since the start of the season. So, I was honored to have him focus for a bit on our front lawn.

It is also entertaining to watch him work. He dresses like the ultimate 'ghostbuster of leaves' and in half an hour the job is done. When Tom and I do the deed, we work away at the project for an entire weekend, fighting the winds at every turn and moaning and groaning like old people. (We just don't like to thing of ourselves in those terms yet!) I know. I know. Our time is coming! LOL

Anyway, I want to highlight this 'clean the front lawn of leaves' event because we are so blessed to receive the help as we need it. I asked and there was no debate. Drew put it into his schedule. Best part, of course, is sitting and talking at the kitchen table afterwards. 

To catch up on each other makes my day. And to see my little Yorkshire terrier trying desperately to be polite and at the same time protect me from this 'big, bad leaf blower guy that is 6'4" and smells like black lab and bull dog' is hysterically funny. 

She sits on my lap and shows her teeth periodically like she's smiling. I call that grinning through her teeth. Then she gets all affectionate and asks for Drew to scratch her behind the ears. Makes both of us laugh. I always say, "Claire has the soul of a wolf!" At least she tries, and she is a blessing in her own little way.

So, this quilting cancer girl is off to teach this afternoon. I am blessed today with clarity, a clean front lawn, a wonderful son, and a chatty little Yorkshire terrier. How lucky am I! And the day has just begun.