Day one.

It begins again. Day one.

I had someone ask me what I mean by the day of the cycle and I realized that not all of you reading this are chemo savvy and understand the language of chemotherapy.

My chemotherapy is on a 21 day cycle. Day one is the first day of the cycle, and for me on this Ixempra it is the day I get my entire dose of chemo. We talked about breaking it up into two doses on day one and day eight, but I decided I’d rather just be really sick all at once. So day one is today, the day I receive my chemo. I enter into this day with great trepidation but with determination that I will make it through. I have made it this far, I can certainly do it one more time. I am not looking forward to this chemo, it is such a brutal experience, but I have fabulous new shoes to fortify me. Then we just start counting the days, day two tomorrow, day three on Saturday and so on. Yesterday was day 21, the final day of the cycle. I don’t get chemotherapy on any day but day one, the rest is just survival. I start the Neupogen shots on day two and continue with those every day until my white count stabilizes and I am no longer neutropenic, usually about day 14-18. Other chemotherapies have other cycles; my chemo four years ago was on a 14 day cycle. So 21 days is not universal, it depends on the drug.

So…I mentioned the shoes. Have I talked about the shoes yet? I think I referred to them in a previous blog, but let’s review again, since this is probably the most important factor of the day. The shoes. The fabulous shoes. The crux on which the entire treatment rests. Peyton and I went shoe shopping a few weeks ago. We were unable to find that pair of shoes that screams my name and says “buy me, I am perfect for chemo!” The type of shoes I look for are unique, heeled and closed toed so I can wear them to work. Unfortunately, no opened toed shoes are allowed in my office. So, we searched, and while we found some amazing heeled opened toed or peep toed shoes, nothing with a closed toe, in my size, that fit the requirements. A quandary. What to do? Well, Buckle had some fabulous summer sandals. And I mean fabulous, gorgeous, amazing. Peyton was dying for these rhinestone sandals and I found some sparkly ones that made me smile and my heart sing. Could we mix it up for this round? Would it jinx it or bring in a whole new dimension that we had yet to explore? I had to make a decision. Me and my daughter together, we are a force to be reckoned with. Together, we are an amazing team, a team worthy of fighting and winning a battle against cancer. So together we would stand, on this last round before my CT in new shoes. In fabulous new sandals that will carry us into the healthy days of summer, into the sunshine, into a cancer free future. Together, we stand and together we fight in our new fabulous shoes

Today is the first day I have really enjoyed a cup of coffee and it saddens me to know that tomorrow, the taste will be gone. The nausea will be back, but at least I had today. Yesterday I was actually starting to feel like myself again and Mike and I went to the Quattrocelli concert which was wonderful. Four cellist from Germany, with beautiful music, wit and humor, it was a great way to spend the evening. We ran into Nancy Lyons and her husband DJ and all sat together enjoying the company and the music. Its moments like this on which a life is built. Those times with the people you love, enjoying the things you love and the sharing that time together.

I am ready. I have my shoes on my feet (they look magnificent!), a lapis necklace around my neck that was given to me by a friend to open my heart to possibilities and a smile on my face. I can take anything that comes my way. Bring it on.

My Arm is Swelling...

The lymphedema is back. And it is awful. My arm started swelling this weekend and I tried wrapping it as I was taught and wore my glove and the swelling still didn’t subside. So I called my friend and physical therapist, Sara, on Monday and was lucky to get in due to a short cancellation. She measured and my right arm is up 4cm and my left arm is up 2cm. While that may not seem like much, when you have 4cm worth of fluid in your arm pooling under the skin, it is quite painful. The left arm isn’t quite so bad; I never had surgery on my left so the disruption in lymph flow is probably due to the mediport on the left side.

So she worked on my arm for about 45 minutes and then she wrapped it, and wrapped it, and wrapped it. Three layers of wrap all the way down to the fingers, I felt like a mummy. But the theory is that it will push the fluid out. I was able to keep my arm wrapped until the middle of the night when I just couldn’t stand it anymore and took all the wrapping off about 1am. Ahhh, relief. My arm could breathe again and I could finally sleep.

Today, I’ve been really tired and I attribute it to the swelling and the poor night’s sleep I received last night because of my arm. I had PT at 10am and she worked some more to get the fluid out, it seems to be worse down by my elbow, which makes sense due to gravity, and she actually got it reduced by about 1cm. Then she wrapped it again. Ack! I feel like a one armed monster. It’s amazing how many things you need total use of your arm for! Typing, for instance, is very difficult and uncomfortable, which is why this will probably be a short blog! Cooking, doing dishes, writing…they all seem to take the full use of both arms. I won’t even talk about the bathroom…I’ll just let you use your imagination there…I’m right handed, no right hand usage…uncomfortable!

I am trying hard to keep my spirits up and stay positive for the next round. I am praying one more round clear CT one more round clear CT one more round. I can do it. Pray with me…one more round…clear CT…one more round…clear CT. We can get a chant going that will encircle the universe and make it reality. I’m ready!!

Prom is Coming!

I think I overdid it yesterday, because I am exhausted today, but I had a wonderful day with my daughter.

We started with lunch at Applebees when she got off work at noon and then drove to Sunnyside to Fashion Corner to look at prom dresses. Can you believe it, it’s almost prom season. We are so excited, her Senior Prom, last big dance, the big hurrah. Grandpa had volunteered to buy her dress, so she was on a mission to find the most gorgeous dress she could discover. And gorgeous she did find! They had it in blue but not in this purple color, so we had to order it in and it should be here in a few weeks. So then we’ll go back to Sunnyside for a few alterations and then back again to pick it up. But it was totally worth it! The shoes she picked are absolutely fabulous and I was looking for a picture on the internet and can’t find them and can’t get a good picture to share here, so I’ll attempt to describe. Silver. 3 in heels. Rhinestones across the toes up the center and around to the sides of the ankle. Gorgeous. She is going to look amazing.

We had such a great time, me, Peyton and Grandma. On our way home we stopped at JoAnns to buy some more scarf fabric and Peyton wanted some fleece to make a blanket for Jessie with Grandma’s assistance. After dropping Grandma off, Peyton and I went and got pedicures (our toes look fabulous) and then out to dinner.

It was a full day. But I was so grateful that I had the energy to make it through. By 9pm last night I was done for, in bed, sound asleep. And I slept very late this morning and am feeling pretty tired today. Perhaps I did too much on my first day of feeling well, but I don’t care. It is precious time with my lovely daughter. Time that I will always treasure.

Time is the most wonderful of gifts that we can give each other; that we can share. Every moment that I spend with those I love is a moment that should be cherished above all. I am grateful for each and every one I have.

Back to the Light

What a difference a day can make.

I have chronicled my descent into the darkness; now let me account to you my journey back into the light and the land of the living.

I finally started to feel better yesterday afternoon. The nausea wasn’t completely gone but it was significantly better. I was still very weepy and was having a hard time keeping it together. I wasn’t sure how well I was going to do at the Variete dinner last night but was determined to go.

Peyton helped me pick out what I was going to wear, including lots of sparkles, but we realized that I didn’t have a scarf which would match the ensemble. So we quickly ran to Joann’s Fabrics to find some material that would make a great scarf. We found lots of material, and about $50 later we were headed to my mother’s house with about seven 3x3 swatches of material. The one I wanted for last night was pure black with sequins. I mean, if I’m going out, I’m going to shine. I left mom with the fabric and went home to try to do something with my face.

I worked on my makeup, matching my outfit with browns and golds and expertly applied the false eyelashes (my real ones are getting to be few and far between). False eyelashes mean the tears must stop. The glue cannot sustain tears and if I cry, then I’m going to end up with a caterpillar on my eye, and possibly falling in my food. Gross. So that meant that at least for the night, my crying was done.

I ran Peyton out to Lippes to babysit and came home to finish getting ready. Mike came to pick me up and he said I looked beautiful, and you know what, I felt like I looked beautiful. I felt put together, confident and ready to face the world. My day had improved already.

When I hit the convention center, I was immediately faced with the smiles, the joy and the love of my friends who were so glad to see me. And I, of course, was ecstatic to see all of them. There was great music, auction items and nice wine (which I imbibed in one glass of) but the best part was the look on the face of each of my friends when they saw me, the love I felt when their arms embraced me, and the genuine joy of the reunion. The support I felt, the love, the authentic concern and the desire to have me back where I belong filled me to the brim with happiness. I realized it’s not one-sided. My friends want me back at Kadlec as bad as I want to be there.

One friend in particular, I won’t name her name, made my night with her enthusiasm regarding my certain return. You know who you are, and your words are permanently etched in my mind and on my heart. They meant so much to me.

My sweet dear Mike topped the evening off with a beautiful wrist corsage made with gorgeous roses and an Angel of Courage for Breast Cancer. I couldn’t read it until after I came home (lest my eye lashes come loose) but his love for me filled me completely. I felt like myself again. I felt like Patty was back.

Last night was just was the doctor ordered. Just what I needed. When I asked God to fill that hole that was left behind by my job, he sent me my friends from work, and they filled me to overflowing. God bless you for doing God’s bidding in my life. Each and every one of you is such a treasure to me, I hope you know that your love, your embrace, your words have helped to bring me back to where I belong. Back out of the darkness and into the light.

Sometimes, when you just can’t take another step, when all seems lost, you just need a few friends to carry you.

Thanks for carrying me back.

Filling the Hole with Light

Well I woke up today and didn’t feel rotten. Not great, but not rotten. So I would have to say that is an improvement. I am on day 15 of 21, so I would certainly hope that I would start to feel better. Yesterday was awful, probably the worst that I had felt all week. So maybe the sun is going to come out and I am finally going to move into the light.

As you are all acutely aware of if you read my blog, you all know I am struggling with depression. Reflecting on the last month I can see where my “turn for the worse” happened. It wasn’t one singular event, but a series of things that has brought me to the point I am at now, where I am struggling to see the light. Struggling to stay in the light. Struggling to keep the hope alive.

There were numerous events that occurred during the last month which have contributed, but there are two major things that have impacted me. It started with this new chemo. I have talked about it before; this chemo is so hard on me, physically and therefore emotionally. When you are so sick physically, it becomes harder and harder to keep a smile on your face. I know this chemo will end and I’ll feel better again, that is what gets me through. One day at a time.

But the most significant event that has impacted me more than anything is the loss of my job. I cannot think about it without crying, without my heart breaking. And I know that Rand has promised me that my job is there for me whenever I am well enough to come back, and for that I am eternally grateful. It helps get me through the day knowing that when I am well, I can go back to the job I love so much. What hurts is that right now, today, tomorrow and the next day, I can no longer do my job. I can come in occasionally and help where help is needed, but it’s no longer my job. It’s someone else’s and it breaks my heart beyond belief. I love my job. I love going to work, I love interacting with my co workers and board members, I love working my tail off all day and knowing at the end of the day I got so much accomplished and it was meaningful work. So for those of you who bemoan getting up every morning and going to work, say a prayer of thanks that you still can, for I can’t anymore. And I miss that more than words can say. I miss going to work everyday. I miss my job. And for those of you at Kadlec who read this…I miss you. Kadlec is like family to me, and I feel like I have lost part of my family. And I know you are all still there, praying for me, rooting me on, bringing me meals and sending me cards and emails, but the day to day interaction is gone. I was born and created to serve, and my job is a job of serving people all day long, and I miss that too. I want to be the one helping others instead of others helping me. I miss people stopping by to tell me the latest antics of their children or the newest sorrow in their heart. I miss the sharing and caring I developed with so many people. I miss it all more than I can say. So as I battle with this darkness, I know part of it is coming from the huge hole that was left when I could no longer work. It has taken away a huge part of who I am, a part that is so integral to my identity.

But, in order to survive, I must let go. So, that is what I am working on now, letting go of what I cannot control, and I cannot control my inability to work. It is no one’s fault; it’s just the way it is. This illness has progressed to the point where my focus must be on surviving each day the best I can and fighting the illness with all that I have inside me. And in order to fight, I must let go of the things that drag me down, and the hole that was left by my job must be filled with something else. And so I pray, and I ask God to fill that hole, to fill that blackness with His holy light. Because there is nothing else that can go there. Nothing can compare with the joy that I derive from working, so only God can fill me up and take away the awful pain. I know where my focus must be, and if I ever hope to be able to take Rand up on his offer to come back to my job someday, I must focus on my healing. I must focus on hope. I must focus on the great source of light within us all, the light that belongs to the Great Healer.

This sickness will pass. I have faith and I have hope that someday, hopefully soon, I will be well again. And I will step back into my life a better person, with a unique perspective into the indescribable beauty and joy that is called Life.

Snap out of it.

I keep thinking of that scene from “Moonstruck” where Cher slaps Nicolas Cage across the face and tells him emphatically to “snap out of it”. That’s what I want to do, just snap out of it. Snap out of the depression, the sickness, the negative thoughts. Snap out of the nausea, the pain, the fatigue. Just snap out of it.

I wish it was that easy. I try to respect my body’s needs, sleep when I am tired, take my medication on schedule, but this chemo, this disease, is taking everything out of me. I am finding it harder and harder to snap out of it.

I know that there is an end to feeling sick from this chemo. Eventually I’ll feel better; at least the odds are that eventually I’ll feel better. But the waiting is killer. Everyday I think, today is the day that the side effects subside and I’ll be okay, and today comes, and the side effects are still there, strong as ever, sometimes stronger than I would expect. I think I should feel better and actually I’ll feel worse. I’ll think I should be able to have a normal day, and I end up in bed all day sleeping.

So, snap out of it. That’s what I will work on doing. Snapping. Out. Of. It.

Congrats to Canada

Despite proudly displaying my flag, wearing my USA shirt and star earrings, the USA didn’t win, but it was a GREAT game. I think it ended up the way it was supposed to. I mean, if the US had won, we would have been really happy but we would not have had 40 million people coast to coast celebrating deep into the night. No, it was Canada’s game, Canada’s win and Canada’s night. I am happy for our northern friends. And that it was that sweet Sid Crosby who had the winning goal, well, that just makes it even more palatable. I sure enjoyed spending the afternoon with my parents watching the game, eating snacks and enjoying each others company. Always a good time.

I finally took my car over to the car wash yesterday right after the hockey game, before it had gotten too busy yet. It was in dire need of a car wash. It was absolutely disgusting, worse than I have ever let my car get. It wasn’t that I didn’t have the gift card to go over and clean it, it was just I never felt good enough to sit while the car was being washed. Yesterday was a nice day, and I had taken extra anti-nausea medicine because I was eating all my mother’s fabulous snacks so I was up to a few minutes of sitting in the sun waiting for my car.

It was a beautiful weekend, and I think the sunshine helped to chase away some of that darkness that continues to haunt me. I am feeling a little bit better, not a lot, but in small degrees. I am trying to manage my medications better to manage the symptoms better. I want to call Michelle and see if we can get something to manage my pain better, I hate taking all these pills. Something time released that I don’t have to take quite so often that will still manage the pain. My brother has a recommendation from when he had cancer, so I am hoping maybe what worked for him will work for me.

I continue the shots through Saturday night now. I have blood work again on Wednesday, and we’ll know then what my counts are and if we need to add more shots. I hope not. Mike and I are SO ready to be done with those shots.

Well I’m hoping to work a few hours this week; we’ll see how my body stands up and how my blood counts end up. If nothing else, I’ll continue to work a little bit from home. It’s always good to feel useful.

Keep me in your prayers that I keep getting better and am able to have my chemo on March 11th and then after that….clear CT. I long with all my heart to hear the words “all clear.” I dream about it, it is the one thing that gets me through each day. Those words are out there looming in the distance. I know they are there, rolling around the universe, just waiting to be spoken.