Lessons learned at year's end

Cancer does not shut down for holidays. Darn. There's no free ride or festive break. Christmas was rough. In fact, I can honestly say there's not much I remember from Christmas because I pretty much slept for four or five days, waking only to watch a movie here and there. I do remember parts of 'The Shack' and 'Sweet Home Alabama'. Merry Christmas!

Standing up was nearly impossible. It felt very much like having a bad flu where you about crawl to the bathroom and then back into bed. I at least made myself stay in the recliner, but even that was the pits. Only other time I felt so overwhelmed with 'sick' was years ago when I had a ten day bout with vertigo.

My husband was my gift. He waited on me, guided me, hugged me, and managed to enjoy his Christmas even with me being so out of it. How lucky can a girl be!  I even discovered he makes the best toasted cheese sandwiches and does the dishes with a smile.

Now there was another curve thrown our way. My twelve year old black and white cat - named JIB for Jack in the Box - long story - decided this was the week for him to die. While we were trying to manage my strange physical and emotional state, JIB was deteriorating rapidly. Again my wonderful husband stepped up to the plate and got JIB into the SPCA for a ceremonial ending. We both felt sad and yet were very aware - along with our dog, Claire - that all was not right with the world.

I went for my treatment this week on Tuesday and Wednesday. Both days, I was given a shot for those white platelets and sent home. Now I go back again tomorrow - Thursday -  hopefully for an actual chemo infusion. Apparently, over Christmas my platelets hit rock bottom and needed a holiday boost. 

Let me tell you what else I have learned. WATER IS MORE THAN IMPORTANT. If I am not drinking enough water - and this is true for anyone in chemotherapy - the drugs coat the inside of your internal organs - kidneys, lungs, liver and more - and they can build up. Flushing them is vital to surviving chemotherapy in style. I have learned that I must drink much more than I originally thought necessary so I do not get into a stupor like my long Christmas nap.

And I have to share that in my doctor's appointment today, I was told that the doctor can no longer feel the tumor. He said my examination felt like a normal breast exam. Do you think I am celebrating? You better believe it! Color me dancing!!! Woot! Woot! Still, I was not told that chemotherapy could be curtailed. It seems to be continuing until March unless something dramatically changes. We do not want this cancer coming back to haunt me forever and ever!

So as the New Year approaches us, I am waving goodbye to 2021 and looking ahead with positive thoughts and prayers that in 2022 there may be beautiful sunrises and sunsets, good health news, lots of  my beloved quilts, and eventually, maybe hair! Happy New Year to you all, and remember to drink water, even as your health is good.

Drinking 60 ounces of water minimum each day, The quilting cancer girl

Cheering for strong white platelets

Seems like the past few days have been spent in a car. Weird, but true. Monday we went for my treatment and of course they gave me a shot in my arm and sent me home. I didn't pass the lab test again. My husband is so patient. Apparently, my ongoing side affect from one chemo drug is that it continuously fights against my white platelets and wins. That drug sure is trying awfully hard to eliminate them! Not fair. Just not fair.

Went back to the clinic Tuesday and passed the lab test so I stayed for 9 bags of drugs. Woot! Woot! Then came home like a zombie and spent the afternoon in the recliner sleeping like a zombie and snoring loudly. Thank goodness for the Meal Train.

Then today I was pretty shaky but managed to tap the energy from that shot and the steroids they inject into me. Drove myself - successfully I will add - to a dental appointment in Tonawanda. There I learned that I must have a tooth pulled and go through the implant process. Now I'm thinking, how does one do that with no white platelets and not get an infection. The answer: get the implant specialist talking to the oncologist. Makes sense, me thinks. The specialist and I will discuss that on Friday.

During my lunch break, I had a marvelous conversation with my Chicago sister and then piled back into the car to take my little Claire for a Christmas haircut so she looks pretty to meet her cousin, Indy, from Indianapolis at the end of next week. 

Blissfully let myself veg in the car while I waited for Claire to become Miss Cleopatra. Hated to go to sleep and make the groomer's neighbors think there was a dead person in the front seat. So, I wrote in my journal and texted people with whom I needed to reconnect. 

Now I'm home and happy to be home. No car stuff till Friday.  Amazing how wonderful it is to have those little white platelet guys active inside my body. Gives me life, liberty and the pursuit of happiness. That shot they give me  miraculously gives me that energy I used to take for granted everyday. 

Interestingly, now, the oncology team have set up my future appointments differently so the first day I go for the shot and the second day I return for the actual treatment. Hey! I could have a worse side affect. And I learned this week, that I'm not unique to this dilemma. It haunts many other cancer patients as well. 

So if you are in treatment and reading this, you are not alone. It doesn't have to get you down like it did me in the beginning. Enjoy the upside when you have a little energy and plan your week accordingly. You'll get a lot done in those first 48 hours! And I guarantee you will thank me for sharing this information. It gives us all a reason to sing 'Hallelujah' and celebrate those little white platelet fellas!

Keeping my chin up and praying lots, The quilting cancer girl

Receiving is hard for me

I have a hard time receiving. There. It's 'out there'. I have always been a giving person, trying to help the other guy or gal. I want to make a difference. I write cards and letters. I make phone calls. I send email. I teach and help people understand a concept so they can pull it off in their own lives. I lift spirits. I sew for others. 

Fact is, when I am in a situation like cancer, and others are doing for me, it's very difficult to know just how to respond. Your caring is priceless as you offer rides to medical appointments. Meals keep us afloat, especially as I lack energy many days to cook anything. Monetary contributions help us with outstanding unplanned medical bills. Your cards are beautiful, I keep them all to read and reread on my down days. They help me know you better.

And then there are these remarkable, very thoughtful gifts that you pass on to me with your cards: a special quartz stone, a worry angel, a quilted hug, a crocheted angora shawl, a painting of a beautiful horse, a bookmark with very unique meaning, gift cards, a bracelet that says 'Anything is Possible', lavender soap, flowers, Aquaphor lip balm, warm socks, even water from Lourdes in France. I am touched beyond words at how you love me. 

What happens, however, is that I almost feel guilty at having cancer and receiving these thoughtful gifts from you. I know you think that's totally weird but something in me wants to say, "No I am healthy. Give these gifts to someone who can use them." 

And then there is this dawning where I realize I really am sick and you are reaching out to me with God's love. You become my most avid cheerleaders. My husband keeps reminding me, "You are so loved by so many."

Believe me, I am eternally grateful. You are not only sharing love, you are teaching me how to receive graciously, and there's a life lesson in that. I am learning to say 'thank you' every way possible because I want you to know that you are making a difference to me - a huge difference - and I am wanting to take you all into a huge hug that just lets us 'be' together. 

No words. No conversation. Just a big 'love hug' that is my simple thanks for being there for me.  I feel you holding my hand so I am not terribly alone inside a cancer wasteland. You help me survive when I am overwhelmed. Bless you all. Bless you.

Grateful you are in my life, The quilting cancer girl

Depressed? Who me?

The past couple of days I decided maybe I was depressed. Like many of my fellow cancer friends, all I wanted to do was sleep. I was down in the dumps, maybe pulling off a kind of pity party on my end. And so I decided I had to do something, anything, to feel like I was moving forward. My goal is to stay upbeat. 'Cmon Eileen. Get your act together! 

I am just not a person that easily gets depressed. Most of the time I focus on the joy of living and the wonderful people who watch out for me, especially these days. I have awesome friends, and equally fabulous family. How could I possibly be so miserable? Why was I not interested in doing much of anything? Of course, I never know if it is the effects of the chemo making me so tired or if I'm just challenged from trying to be so brave and strong.

Well, I took matters into my own hands and hopped on Facebook. In defense of Facebook, sometimes it actually puts humor into my life and keeps me sane. On Wednesday, I found this marvelous little terrier that was very enthusiastic - to say the least- about pulling a branch out of a very tall snowman. The branch was the snowman's hand or arm, and watching that little dog tug and pull on the well-planted branch made me laugh like I haven't laughed in weeks, maybe months. It was glorious! And I shared the humor with a variety of other folks, who also thought it was too funny. 

So thank you, Facebook, for the giggles and the human connection. You helped me snap out of my funk because people I know are readily available. Yesterday I needed to sleep but today was much more productive. In fact, this afternoon, I sewed with one of my favorite sewing sisters who is creating the phenomenal wreath you see here. We chatted as we sewed, and life quite simply felt good. Sigh!

Off to keep my spirits up, The Quilting Cancer Girl

The light is on today

So I slept the day away yesterday. In fact, I'm not sure where the day went. We drove to the clinic at 8 a.m. and I was tested right away to see if I could stay for chemotherapy. I passed, thankfully, and my husband got to go home for a while. 

When they gave me my bag of Benadryl, I was out like a light and later woke myself snoring. That's always so embarassing! But then I listen to others who are sleeping and realize I am just one part of a wide orchestra of snorers from all across Western New York. Some of us are bass, others soprano, a few are whistlers, and some rumble on like the tuba or drums. I swear, the nurses must talk and giggle about their daily entertainment.

Anyway, Tom drove me home about 11:30 (It was a short treatment today.) When we walked in, I apologized for appearing drunk and settled into the recliner for a long afternoon nap. Woke up around 3:00 and went right back to sleep again...a deep, delicious sleep that could only be healing.

On such days I realize that I can be grateful for true rest. It's not tossing and turning uncomfortable sleep. It's the kind of sleep you remember after building a snowman and then having hot chocolate before mom said it was time to catch some zzzz's. And you settled under grandma's quilt on the couch and slept like a kitten under the Christmas tree.

Today I am much more with it: getting into my sewing room and writing a pattern for the Block of the Month on Saturday. Also I am working on a PowerPoint and then a few of those Christmas projects that sat while I slept. 

This is a day when I feel like the light turned on. The past couple of days I was in the dark. So I celebrate my more regular routine - and add that I am now officially bald all the way! Best part is that on this day of light, my baldness is okay with me. Guess I've come a long way. It doesn't make me cry anymore...partly because I finally let my husband see me with no hair.

Signing off, the bald quilting cancer girl

Bombed Again

Part of my new reality is I have no control. My body has its own mentality and does what it wants whenever it decides to do it...or not. I hate it. I hate that I can't do my hair anymore. I can't depend on whether I am going to have bathroom issues in public. I have no control over fatigue, even after I have slept for twelve hours. My digestion is not the same. My nose bleeds at least twice a day. I get sores on my skin and pimples on my face. My one foot has decided to hurt, and my white blood cells just won't behave themselves.

That's right. They sent me home from my infusion again yesterday. My white blood cells bombed and so I got another shot. Why? Why? I am told it is one of the chemo drugs that kills my white blood cells, that it is a side effect of chemotherapy which not everyone has. Just me, at the moment. Just me. Darn.

I had to call Tom again because he in good faith said I was fine and left me off at the clinic. So I sat by the door of the clinic, watched the ground breaking for a new oncology building, and greeted everyone who entered the existing clinic with, "Good morning. Nice to see you." And, "Have a wonderful holiday!" Interesting reactions from the folks who entered and exited. Some muttered something. Others were talkative and helped my time pass. Then there were those that stormed out the door because I was a bother. No problem. I tried.

Back at home, I knuckled down and finished a t-shirt quilt, then got busy on a few Christmas projects. My company was Christmas movies. They were okay, but my real company was tears. I felt so sad all day yesterday. I was frustrated, angry, and disappointed. I talked with God and asked stupid questions like "Why can't this be easier?"  I shared that I was trying so hard to do everything right by cancer. My patience was being tested, and I just cried.

Tom was the awesome, understanding husband. He knew there was nothing he could do except hug me and hold me. That he did, several times, and I cried more.  Sure. I am still grieving for the healthier me. The little kid in me wants to be like all my family and friends who are 'out there' having fun with Christmas. I also don't want these pauses with my infusions because that means I have to struggle with chemotherapy longer in the spring.

I know I trust my God. I believe he is leading me through this. The path I am following is His and it seems I need more time to get a hold on my journey. This is not easy. And, who knows, maybe it was meant to be that I was to greet all those folks coming in and out of the clinic yesterday. If I made a difference to one newly diagnosed cancer patient, then all my tears were worth it. Lord knows, I would have loved someone to greet me at the start of my long trip down that long hall to the oncology suite. Acknowledgement of our very existence is somehow an affirmation that we are not alone in cancer...and that affirmation is golden.

Off to try for my infusion again today. It's Tuesday and I am signing off...The quilting cancer girl

My Little Secret

Looking forward to something wonderful every single day is a must. Sounds like an Eileen rule, doesn't it? This was a mantra I grew up with. My grandparents used to emphasize the importance of living with things to anticipate; my parents were big into making sure that our family had things to look forward to as we moved through a year. In fact, as senior citizens they were always scheduling a date night out at the movies, dinner at a restaurant, or even a trip to see their daughters or Alaska or Las Vegas. My mom said travelling gave them hope.

For me, scheduling something to look forward to takes on a slightly different meaning. It's a favorite class that I am teaching at the end of a week. Maybe it's ice cream at the end of a long day, laying in the summer hammock to read a book, or sleeping in the recliner after a particularly hard morning. I figure ways to reward myself that makes any of my current struggles worthwhile. 

Many of my cancer friends keep their focus on events unique to their family. They want to be present at their granddaughter's graduation or their niece's wedding or the family reunion next fourth of July. They make that 'look forward to time' and literally live to enjoy their family moments together, then take on a whole new family focus.

One girl at the clinic, Christine, learned she had stage four breast cancer when her daughters were 13 months and four years old. She talks about living from one holiday and one birthday to the next, always wondering if she will make it. Still, she looks forward to their growing up, and with family support during all these years of chemotherapy, is doing well. Her daughters are now four and seven.

I have a bigger tendency to establish goals for myself that are grounded in my daily living. Perhaps it is a deadline for a quilt to be finished or a class to be planned. Sometimes it is how many steps I can take in a week as I walk the neighborhood, or a book I want to finish by the end of the weekend. They are goals that give me purpose and joy and they stretch me to learn, use my skills, and exercise. I feel really good from those accomplishments, and yes, they do give me hope.

Today is my Monday infusion. At least, I am praying it happens. My 'self' is feeling pretty good so I am assuming my white blood cells will be in tact enough to be accepted for treatment. What am I looking forward to afterwards? What is my reward? Do I have a goal? Yuppers!

I have a t-shirt quilt to bind so that I can notify a woman that it's ready for pickup. I also have a few Christmas projects to complete. They will keep me focused across the morning and when I return home, hopefully, I will be energized enough to enjoy my sewing room. 

The beauty of such goals is that they are my little secret. While I struggle with the day-to-day of my cancer, they let me go to a positive place that gives me light and keeps me whole. It is so like looking forward to the birth of Jesus. No matter my struggle, I can mentally and emotionally go to a positive place full of peace where a little child lies in a manager, giving light and hope to the people witnessing his existence. I need that hope these days...and so I trudge on, always looking forward to something wonderful.

Hopefully, the quilting cancer girl