Celebrating

Today I quietly celebrate. This morning I am not scheduled for my weekly infusion at the clinic. What a freeing feeling to know that my Monday is my own! In fact, I will not return for another infusion until April 18th. Yeah!!!! Now that is worthy of an hallelujah!!!!

Throughout this cancer journey, I have heard different ones of you say, "Now that's a reason to celebrate." Interesting. Because I was burdened with cancer fatigue, I did not equal your celebratory vibes until this morning. 

I woke up, looked at the clock, and immediately revisited that elementary school feeling on the first day of summer vacation, only my small vacation is from the cancer clinic. No treatment today! 

There is no need to prep for my infusion. No special treatment for my mediport. No dressing in my infusion friendly clothing. I enjoyed my devotions, expressing gratitude for this freedom on a sunshiny day. I could eat breakfast and do the crossword, listen to the news and chat with my honey. It's the simple things that make me gloriously happy.

Guess I need to take a moment here to explain that with the cessation of chemo drugs, my energy is returning, very slowly - with two hour naps most afternoons - but it is finding its way back and that makes me smile. 

I have been sewing non-stop, especially in the morning hours, and that feels so good because my brain is less foggy. I am not constantly re-educating myself about piecing and quarter inch seams. My mind is crawling out of the haze a day at a time. I am not as shaky. Obviously, I'm not all the way there yet, but I am improving, and that feels mighty good.

A shout out here to my Indianapolis sister who every single week was on her phone texting me during my infusion time. She might as well have been sitting in the chair next to me, holding my hand. We chatted about our respective weeks. She listened to me dealing with my side effects. We discussed things we could look forward to, and quilt projects on our sewing tables that occupied our minds with something other than cancer. 

I appreciate that this Indianapolis sister - her name is Donna - would dedicate that time to just be there. She patiently accepted my hardships and kept me upbeat. We prayed together and laughed at the fact I was only good - during the infusion - until the Benadryl kicked in and I totally submitted to sleep. Donna would say, "Good night". Then, I was off into a drug induced coma in my clinic recliner until the nurses roused me from my loud snores. It was time to walk a crooked line to the car where my husband awaited, ready to drive the coach home and tuck me into my home recliner for a long afternoon healing nap or escape from reality. Those were often hard days! I celebrate you, Donna.

My infusions will continue, a kind of maintenance infusion, until November, or so I am told. Minus the toxic drugs, these infusions are every three weeks, and consist of two good cancer fighting drugs to make certain the cancer is constantly confronted within my system. I'm thinking of these drugs as little Minions, busy within me, fighting my battles where I cannot.

So I celebrate for a variety of reasons: my reprieve from weekly infusions, my renewing energy, my patient sister, and my sewing room. By the way, it is looking like I may finish a quilt today, which is delightful. The picture above is what I have been working at, off and on, since my diagnosis last fall. Soon it will have a forever home. I will feel supremely joyful, and have yet another reason to celebrate! Hallelujah! I am so blessed.

Signed in 'let's finish this quilt today' mode, The quilting cancer girl

Healing and patience.

I know it has been a week since my last post. How am I doing, you ask. Well, I managed the week pretty well considering I was nursing that bad tooth.

Am happy to report that the tooth extraction went okay yesterday, although the dentist cut the tooth out in three sections. Not the most fun appointment. That tooth was not going to leave my body without a fight. In retrospect, I understand now why I was in a considerable amount of pain for all these past months. I am celebrating that the tooth is gone - they never even let me look at it to bid farewell - but now, with a very swollen right jaw, I am truly healing. 

On Monday, I received my first infusion of the next step in my adventure. While there are no more toxic chemicals soothing me with love, I am receiving two drugs that will make certain any remaining cancer is kept at bay, should there be any cancer left lurking in my organs or tissues. These infusions I receive now are every three weeks until November, unless something in my April surgery changes that.

Through all of this, I have decided a cancer adventure happens in stages. There is the beginning with diagnosis, education, a mediport, and tests. I call that the Anxiety Phase. For me, it was panic, scare, and an underlying apprehension that stayed with me throughout - my blood pressure was always sky high. And yet, that scare helped me become more faithful and more trusting of God. I prayed for courage and strength. I still meditate daily, looking forward to each day's God given peace and joy.

Then there is the Endurance Phase. This challenged my mental attitude as each week I confronted cancer fatigue and submitted to the twists and turns of what drug could make me most miserable and what side effects would either lift me up or give me a complete and total downer where sleep was my best friend.. Chemotherapy, folks, is hard. I will always have deep, deep respect for anyone receiving chemotherapy. Always and forever. Amen.

Now I am in my self defined third phase. This is what I am labelling the Patience Phase. So no more chemo. No more toxicity in my system. But since the process is cumulative, I have five months of drugs to wash out of my system. That takes time. Lots of time...and water.

My nails need to heal. Looks like I am going to lose them all. My gastrointestinal processes will hopefully return to normal someday. Patience. Patience. My skin needs to regroup and lose all its toxic red spots. My taste buds can come back anytime. Really. I so look forward to delicious food again...someday. My energy? Somewhere along the line my energy transformed into weak and foggy. I am told it will rebound.  And then, there's my hair. Hmmm. I wonder...?

I'm sure I will insert additional 'phases' into my process. I'm facing surgery in April, and the sentence then to radiation or not. Sigh. 

Still, with all that has happened to me, I believe the worst is over. Hope has returned. My geraniums are blooming again!!! Between now and November, I will gradually burst forth on the normalcy scene as a healed human being with energy and a sense of humor. Just you wait!

And you know what the best part is? I am done with that cranky old tooth and all it's pulsing in my jaw since last fall. That's an hallelujah. Let the celebration begin. I keep wondering if it was as painful to grow that tooth in my teen years as it was to see it through its dying days. No matter. I'm done with it and looking forward to the bright future of spring and summer.

Signed here with shout outs to all of you who continue as my cheerleaders, The quilting cancer girl

A report on last chemotherapy

 

Just a short post to say I  pulled off yesterday - my last official chemotherapy - in fine order. Met with the oncologist to talk about the future. It is looking much brighter. Like I am ready to feel human again.

Next week I come back to the clinic to start new infusions. These will be once every three weeks and they will not have any chemo drugs in them, only the healthy good stuff to continue attacking any remaining cancer. They have no bad side effects. I continue these infusions until next November. That's when I can hopefully ring my celebratory bell.  I've had my bell rung quite a bit this year. Time to ring theirs!!!!

I discovered my very sore fingernails and toenails should start improving next week after the toxic drugs clean out, and my energy should start returning along with my hair. How wonderful and grateful I am for these new pieces of information. It's the small things that make such a difference. So much I am thankful for these days. I am so blessed that God has been by my side through this whole process.

The oncologist also gave me permission to get an appointment for tooth removal next week. Will set that up today. I have never been so excited to have a tooth extracted! After that is done, I may just do some celebrating!!! I just pray it will not get infected. Since my blood work is better, it will hopefully heal well.

So that is my update. Just keeping you in the loop. Have a marvelous day today and everyday.

Signing off as I enjoy a standup sewing day, The quilting cancer girl

The hardest week

I look ahead, and the finish line for this intense chemotherapy event is on the horizon. You keep cheering me on; God continues to hold my hand. I am so grateful for every bit of support. Thank you for being there...because this past week was the hardest week so far, next to Christmas week. I am enjoying the birds at the feeder though. They give me hope for better days.

If you need a mental image of what I am feeling, ponder the cross country skiing in the Olympics. Each skier came over the hill above the finish line. With their ski poles digging into the snow, they kept on keeping on, one stroke at a time. The end was in sight. 

Huffing and puffing and pushing themselves to finish, each winning skier found a spark deep inside that inspired their 'never give up' determination. And once they crossed the finish line, they collapsed in the snow, having given their sport every bit of energy and muscle they could muster. They wanted a win and drove themselves to finish. What an accomplishment! Each one earned my admiration.

Well, I can see the chemotherapy finish line. My last treatment is tomorrow morning. Ta dah! But the true finish isn't really until maybe two or three weeks later when the drugs slowly begin to dissolve and disappear from my system. Then I will celebrate as I recover 'me' from the gray days of these past six months.

I have been feeling very weak. It is an effort to do almost anything. My breathing is labored. My fingers and toes still hurt. My eyes and nose run continuously; my appetite is so-so. I am totally fatigued. And I'm struggling with that voodoo doll feeling where someone 'out there' is stabbing 'my doll' with pins and making me twitch. Nurses tell me that is a side effect of the Benadryl. And I'm thinking no Olympic skier had to manage all that!

So as I tackle my last infusion tomorrow, pray with me that this coming week is not as difficult as last. And hang in there as I go through the 'withdrawal' to the toxic drugs in my system. It's not over yet. I focus on the daffodils, tulips, hyacinths and crocuses that are peeking through the ground. By the time they are in full bloom, perhaps I will be recovering my spark as well. 

One thing that will definitely help is having my bad tooth removed. Finally, I am on an antibiotic for that, but am told that I still have to wait a few more weeks for an extraction. 

That tooth makes my head hurt constantly. But I'm hopeful. I meet with the oncologist tomorrow morning before my last infusion, and I plan to plead with him that he give his permission for an earlier extraction. It could certainly help me cruise into that finish line...and then I will collapse in winner mode with grace and ease...ready to face the surgery and possible radiation ahead. One step at a time.

Signing out in Olympic style, The quilting cancer girl

The miracle of quilts

This morning I about crawled into the clinic for my infusion. Last week as you may remember I had my last heavy infusion, and it indeed leveled me. When the steroids wore off on Wednesday, I crashed and stayed crashed through Sunday, although I managed to teach Sewing Club, two classes and attend a staff meeting. Good for me! Family and friends reminded me: This will pass.

Tonight I am doing slightly better. I slept after my lighter infusion until almost four. Talked with a dear friend that cheered me. Had a t-shirt delivery and conversation with a client wanting a graduation quilt in May. Pulled soup out of the freezer. Cooked supper, and then walked Claire in a slow walk around the block. Not bad, if I say so myself.

I used my walk time to pray. In light of our world situation, I stayed in the moment, grateful for the freedom to walk our streets and feel safe. Thank you, God. Thank you. I took time to appreciate simple things like sidewalks and trees and quiet skies. I stopped while Claire did her duties and closed my eyes, grateful for the peace we have here. We are so fortunate.

Thought about a Ukraine story I heard this morning on the news. When bombs destroyed a home in the night and the windows were blown out, shards of glass killed all in the family except the mother. She stayed in bed, snuggled under thick quilts and blankets, and she lived. The shards of glass stuck into her quilts, leaving her untouched.. And, with that woman, I say thank you for the miracle of quilts. 

So today was a day of thanks and gratitude. I have a temporary reprieve from the lack of stand up days last week. Sleep has given my body what it needed...rest.  My taste buds are working again. Hallelujah! I learned that amber Listerine mixed with cider vinegar is a good soak for my fingernails. And because of the steroids, I have momentary energy. Best of all, I am beyond grateful that I live in the United States of America where health, safety, human beings, and quilts are a treasured part of our peace. I will enjoy every moment.

Signing off tonight with the hope of sewing tomorrow, The quilting cancer girl

Taxing my sense of humor

Throughout this adventure, I maintained how every week of chemotherapy is different. It is how my recipe of drugs affects my body. It is how my chemo drugs have accumulated in my system, and what reaction I have to that cumulative affect. This week has been one of my most difficult. 

First, I have made it all this way without neuropathy. This week - with only two weeks of chemo to go - I struggle with very sore fingers and toes. Accompanying that soreness, especially in the end of my fingers, I have been extremely tired and weak which means I have been sleeping twelve hours at a time. 

It was my privilege to present at the Aurora Sewing Center Sewing Club on Wednesday. We talked together about foundation paper piecing, and hopefully - in my virtual Batman shirt -  I was able to recruit new enthusiasts for paper piecing. Interesting, however, was how totally exhausted I was after that presentation, Batman shirt or not.  Once home, I crashed like I was vying for a gold medal in the Olympic event of sleeping!

Yesterday I taught two classes from home. Classes went well, but my fingers and toes reminded me how I was confronting a very real nerve challenge. And I was sooooo cold. Having bundled in layers for zero degree weather at my horse barn made no difference as I taught. My core was bone cold. 

My second frustrating side affect...I seem to have lost my taste buds again. They disappeared in December and have been active or not across this entire process. They were better for a while. Now I am back in the doldrums of what I call 'flat food'. It is so weird. Most everything tastes the same. Food just is not fun right now, and you know I love to eat!

And additionally, I continue to manage an aching tooth, one that cannot be pulled until two weeks after my chemo ends per the oncologist's dictate. My gastrointestinal system is less than enjoyable, and yet there is hope: I am growing baby fuzz on my bald head! That is something cheerful and noteworthy!!!

I keep reminding myself that last Monday was the last time I would receive the drug, Taxol. Hip hip hooray! But I do not know how long it will take to clean the Taxol out of my system. And my husband tells me I am crabby! I will confirm that. I am battle weary. I work hard at keeping my sense of humor. 

Thank goodness, I have my quilting, and I can walk the neighborhood. Both help me exercise and keep the neuropathy in check. My prayer about now is that the neuropathy retreats with the ended Taxol. My prayer is that I do not end up with permanent nerve damage. My prayer is that I can nurture that four year old spirit in a Batman shirt...and finish this chemo journey honorably.

Signing off with my chin up, The quilting cancer girl

Getting through Cancer Fog

It's celebration time. I celebrate that I have made it this far. As the sign in the clinic says, "So far you've survived 100 percent of your worst days. That's a 100% survival rate." 

I have just enjoyed the beginning of my sixth twenty one day cycle. My last cycle of weekly chemotherapy. Woot! Woot! It was a 9:00 a.m. heavy infusion; I slept till 5:00 p.m. after getting home at 2 p.m. That helped the Benadryl wear off. I am now feeling pretty good as the steroids kick in. Gotta love those steroids. 

In this post I am sharing half a dozen things that I have learned about getting through the fog of cancer. These few things may help cancer friends that are experiencing a similar journey. They may even encourage you to ask, "what have I learned today"?

1. Give yourself permission to make infusion day all about the infusion. Go through chemo in the morning with an upbeat attitude and sense of humor. Then climb into your recliner when you come home and let yourself sleep. It makes all the difference...and you feel so much better.

2. Build a genuine communication with the nurses who serve you. Because we talk, the nurses tell me what bag of drugs I am getting each time I am plugged in. When I got my Taxol bag today, they said it was the LAST time I would get Taxol. Hallelujah! Great news! 

Taxol is one of the 'bad' drugs, according to the oncologist, that helps 'deliver' the good cancer drugs to target the cancer cells. It also makes me feel pretty punk on occasion and is the reason for many side affects. Was awesome to learn, I am done with Taxol. Sigh. Double sigh.

3. Identify a project ahead of time that you can work on. I love working with my hands and head and heart. To accommodate those needs, I quilt. I also paper piece. So the project I picked to focus on this infusion week is paper pieced. I actually spent an hour after waking up on that project. 

The point: having a project lined up ahead of the infusion means you can make yourself focus afterwards. I use that hands-mind-heart combination to activate my focus and I begin thinking again. Boy oh boyo. What would I do without quilting?

4. Take a walk. I am serious. Even after infusions where I feel 'drunk' and can't easily manage a straight line, I walk through the neighborhood. I happen to have a dog, a scrappy little Yorkshire terrier, and she pulls me along and keeps me centered so I don't fall on my face. Sometimes I can hardly keep up with her. Slow down, Claire! 

Fact is walking helps me get coordinated again. Pick up your feet, Eileen Pick up your feet. I lift up my head and look where I am going. I breathe in the fresh air and clean my lungs. I love the connection with nature...and I pray or I cry. Those walks accomplish so much.

5. Make a plan for when the steroids energize you. Sleeping a normal night might be difficult. For that reason, I have a talk with my hubby preparing him that I may get up very early and not to worry. I take an extra strength Tylenol at bedtime and hope for sleep. 

Usually, I manage to sleep about four hours and then I wake up. It's like my childhood grandpa turns on the lights and says, "C'mon it's time to milk the cows. The milk goes to the dairy by 7:00 a.m. Hurry!"!!!!  Rather than fighting sleep with tossing and turning, I rise ready to milk the cows, except I sew...after devotions. 

6. Pray often, throughout the day, and especially at night. The best part is that a strong relationship with God helps me find the positive thoughts, strength, peace, and love I need to manage this cancer survival business.

Second best...I often fall asleep going through my prayer list. There's family and friends, my sisterhood of quilt ladies, a teenager named Ethan who fights brain lesions from Covid,  a friend whose husband committed suicide recently, and a young Ukrainian couple whose 18 month old was killed yesterday. The list goes on, especially as I watch Ukraine struggle. So sad it is. Anyway, I give my long list to God as I get drowsy, and before you know it I am asleep. Nothing like sweet sleep.

So I take my Tylenol and crawl into my flannel sheets. 

Good night all!   The Quilting Cancer Girl