Now we wait.

Well, now I just wait. All my scans are completed and I say my prayers that I hear those two words that I long to hear with all my heart and soul…All Clear.

As you know I had my bone scan last week, I haven’t picked up the results from that scan yet, but I believe that the results will be positive. Today I set my alarm for 8am so that I could start drinking that lovely berry flavored contrast liquid. So from 8-10:30 I prepared for the CT scan that will help decide my future.

Last night was a late night, I got home about 9:30 from work, the meeting went well and I enjoyed being there and seeing everyone. I had blood work yesterday and despite my high white and ANC counts last week, they have fallen drastically and I am neutropenic again, so I had to get a shot of neupogen after I got home. The neupogen really takes its toll on my body and I get so incredibly achy. So in addition to being up late, I had to get a shot and then start with my contrast this morning. I woke up feeling pretty puny and this morning was fairly rough but by this afternoon I had enough medication in me that I started feeling a little bit better.

I plan on working a few hours tomorrow to get ready for the next few weeks off. The last few rounds I planned on taking just the week after chemo off, but the way I have been feeling and the impact that this chemo has on me for many weeks following, I am going to play working the second week after chemo by ear and only go in if I absolutely feel like my body can handle it. Last week I worked two days in a row and ended up sick for three days and that is just not worth it. I’m better off to stay home and get healthy. Especially since this is possibly my last chemo…well…I want to do all I can to start healing!!!

So pray for all clear. That is all I want. Please God, grant me my fervent prayer.

A New Week

So the week begins. I am feeling pretty good, considering everything my body is going through, and am ready to face the next few days with vigor and enthusiasm before I get hit again on Thursday. I woke up this morning and my legs were aching pretty badly; so I took a handful of pills (pain, anti-nausea) and lay in bed for another hour waiting for the pain to subside. I am now up and around, relatively pain free, enjoying a cuppa coffee in front of the fireplace, my every faithful puppy Sophie asleep on my feet. (Yes, remember ON not AT). The sun is shining through my windows and it looks beautiful outside. I am looking forward to taking a walk with my parents and our loyal puppies about 10:30 to further stretch my legs and fill my cancer free lungs with fresh air.

Peyton has already texted me and she is on her way home from Canada, returning from her adventure, with a successful Americans win under their belt. The first series is done, and they came out triumphant with their devoted fans following them all the way to Canada and back. Peyton told me that they ended up with their faces on the Jumbotron, but they looked liked idiots because they weren’t even paying attention to the game at the time. She quickly received texts from Mason’s (her boyfriends) mom and his billet saying that they saw her on TV! Her illustrious Canadian TV debut.

I am going to take it pretty easy today because I am working tonight and I want to make sure to not overdo it and be able to enjoy these next few days. The meeting is at 5:30 and I am not going to go to work until 4pm, the meeting will probably last until 7:30 and then I have to finish the minutes for a meeting tomorrow morning. So I should be home by 9pm. A few more hours than I want to work, but I think I’ll be fine. I’m not going to go in the office tomorrow; I have my CT at 11am, so I’ll be home drinking contrast liquid every hour in preparation for the CT. Oh joy. I want to try to work a few hours on Wednesday, getting stuff ready for my next few weeks off with this next round of chemo.

I am praying this CT comes out clear. They will be looking at everything below my lungs, my liver, kidneys, bladder, etc. and we are praying that there has been no further spreading of the cancer into those areas. I am SO ready to be done with this. I still don’t know if we have to do chemo until the spots on my back are completely gone, but I have a suspicion that they never go away completely, they are sort of like scar tissue, remaining there forever as a reminder of what has been.

There are lots of reminders from this journey, numerous things that will forever remind me of where I have been and where I need to go. If I ever begin to doubt the love of my friends, the strength of the human spirit or the incredible value of this life, I need only to look back on this path that I have walked and reflect on all those who have walked with me, and all doubt will vanish. This cancer has taught me valuable lessons about life and longing, about what is truly important in this world. I know this disease will never leave me, so I will live with it and allow it to continue to give me a unique perspective on the incredible value and fragility of life. I will doubt less and trust more, I will not waste my time on toxic emotions like hate and spite, but fill my world with love. I will ease away from the chaos that surrounds this culture and find a place where peace prevails. I will release grudges and practice forgiveness towards myself and others.

I may not live longer, this disease may come back in a month, a year, 10 years or hopefully never, but I will live better with the knowledge that this cancer has bestowed upon me. I will take it to heart and live the lessons, a better person than I was before. Making every effort to take the lemons and make a perfect and sweet lemonade of life.

The Shoes

I have found the shoes. The perfect pair of shoes for what I hope to be my final dance with chemo. And what better shoes to do the chemo dance in than Naughty Monkey. The ultimate dancing shoes when you are ready to bring down the house. This round of chemotherapy doesn’t hold a candle to me once I place my feet in those shoes and step on to the dance floor. The party will begin; a dance party of epic proportions! If I only got one more dance to do, let’s do it right, we’ll do a little mamba, some two step, perhaps a little country swing leaving me happy and healthy enough to do a dance for lovers, the tango, with my man, Mike.

Get ready Mr. Mike, you are going to owe me a Tango when my chemo dance is done. And I got the shoes.

You ready chemo? Bring it. Cuz I'm bringing the shoes.

A Grand Adventure for Peyton

I am finally starting to feel better. Thank goodness. I was beginning to think that this chemo was going to make me sick until the next dose, and finally I woke up Saturday morning and thought…I feel okay, not great, but okay. I wanted to get up and around to make sure it wasn’t an illusion and I wasn’t going to recede back into sickness once I got moving. So I carefully arose and tentatively entered into my day. Peyton and I hit Starbucks on her way to work and I actually enjoyed the first cup of coffee in the last few weeks. Mike and I had a cup of coffee earlier in the week, but it didn’t agree with my stomach very well, but the coffee Saturday morning, it was, well, nirvana. Simply delightful.

Peyton is off on a fabulous adventure to our great Northern neighbor, Canada. She sprung it on me when I picked her up from work yesterday; that she and her friend and co-Ams-Fan, Katie, wanted to head up to the big city of Chillawack to see the Ams play. Who am I to stand in the way of an adventure? Not me, I promote adventure. So after a few hours filled with finding Peyton’s passport, searching for a decent affordable hotel, buying tickets to the game, changing the oil in the car, and slipping Peyton a little extra spending money, they were off, headed to the lands of the north, in search of a hockey game, preferably an Americans win. My latest correspondence with Peyton is as follows: This, dear mom is a top notch hotel were in. The guy at the front desk wears a very nice turban. Continental breakfast...oh yes. Turn the corner and it's hard mini bagels and muffins. No cream cheese by the way! No orange juice left and bran flakes for cereal. But over all were having fun. Laying in bed eating toast watching Canadian tv. I guess what can you expect for $78 per night? I am not sure what adventures they have planned for the day, but whatever they do, I’m sure they will have a wonderful time. I miss her when she is gone but it makes me smile that she is off in another country with a friend just being a young adult and having fun. Do you remember what it what like being young like that, no responsibilities, no cares? If you want to take off and head cross country for a few days, you have the freedom to do so. What a gift that freedom is and I hope my daughter takes advantage of her youth and her freedom and experiences everything that life has to offer. As we get older we get stifled and our spontaneity leaves us. We would never leave the country on a whim, but a young adult, oh yes, and I hope there are lots more whimsical trips in her future. And I support and encourage every one of them!

I have found myself a little weak today, my legs are aching and don’t have much strength. The nausea is mostly gone, and I am enjoying another cup of coffee, so far so good! I know me well enough to know that once I start feeling better at all, I start overdoing it so I have committed to take it easy and just enjoy the day. Do little minor activities, take a walk, but mostly rest and read and enjoy emails from my daughter. I plan on working tomorrow night, so I want to be as healthy as possible to cover that evening meeting.

Enjoy the spring that has sprung all around us out there. The sun is peeking out from behind the mild cloud cover and is just screaming to illuminate our day. Get outside and soak in the sunshine. Most of us are vitamin D deficient and just 30 minutes in the beautiful sunshine can fill us up with all the D we need for the day. Plant some flowers, rake the leaves, sit in a chair and let the sun rays embrace you. It is simply the most beautiful time of the year. Enjoy!

Prayers Answered!

Well the good news just keeps on coming. I contacted a friend of mine at Lourdes to see if they had any isotopes to do bone scans and less than two hours later I was sitting in nuclear medicine getting an injection of Tech-99 for my bone scan! Mike and I looked at the scan when it was done and all we could see were four of the original lesions, our untrained eyes could find no additional lesions! Now, it needs to be read by the radiologist, but best we can tell, the cancer has not spread any further in my bones. I will breathe completely when I get the final result from the radiologist, but I’m feeling pretty hopeful. I don’t know if those original spots will ever go away completely, so that is one of our questions…do I have to continue with chemo until the lesions are completely gone. God, I hope not.

I am slowly starting to feel better, but it is a gradual and arduous process. Some days I wonder if I’ll ever feel good again, but I know that the end is in sight. I am definitely not rebounding very quickly between treatments, I continue to feel just crummy, weak, nauseous and achy. I try to get up and around a do a few things, but find after the most minor tasks I am completely exhausted. I just cleaned up my kitchen and the simple tasks of emptying the dishwasher and washing a few dishes left me sweating and out of breath. I had to sit down to rest and catch my breath. It’s awful. I am hoping that once this is all done I will rebound quickly, but I have the sneaking suspicion that it will take me awhile to get my strength back. And I will have to be patient with myself. By the time this is all done (if April 1st is my last treatment) I will have been in treatment for 10 months. That is a hard road to walk and it will take a while for me to recover. So, when I get frustrated, remind me to be patient with this body that has been through so much and has triumphed.

I will continue to let my body rest for the weekend, no big plans. Mike and I are going to try to go to Camerata tomorrow night at Battelle, always a great concert. Other than that, I’m going to take it easy and get ready for this upcoming next round. I am praying that it is my last round of Ixempra. I really hate this chemo. But, God willing, there is an end in sight.

Quick Update

Just a quick update to let all of you know how I am doing. I worked on Monday and Tuesday, which was wonderful, but I think I worked too long on Tuesday and left about an hour after I should have. By the time I got home I was exhausted and barely made it to the couch to sleep for a few hours before taking Peyton to the dentist. Tuesday night I was sound asleep on the couch by 7pm and then went to bed at 9pm. Wednesday I woke up and took Peyton to school and just felt awful. I was weak, nauseas, achy and generally miserable. I spent most of the day either sleeping on the couch or in bed, except for Peyton’s student led conference. I set the alarm for noon to make sure I got up and made it to the conference on time, and thought that once I was up and around I would feel better. Nope. Didn’t feel better, in fact felt worse, so after her conference, came home and went to bed for a few hours. I was able to stay awake enough to watch a little TV last night and got caught up on a few of my recorded TV shows and back to bed early.

Today I feel slightly better, but I don’t want to go back to miserable anytime soon, so I’m going to stay home today and maybe go for a walk if the wind dies down a little. But take it real easy to make sure that I don’t go backwards again. Tomorrow, if I continue to feel better, I will go to work for a few hours to make sure I’m set for a meeting I am covering on Monday night. But only a few hours, I am not going to overdo it again.

Right now we are waiting on isotopes. There was concern that if we waited to do my bone scan there wouldn’t be isotopes and guess what, that became a reality and there is a nationwide shortage and no isotopes to do my bone scan. I am sort of frustrated and feel like I should have taken the one two weeks ago rather than waiting. I thought about pushing back and doing the scan, but trusted the doctor that it was better to wait and take our chances. So, I am on a list at the hospital that if they get isotopes they will call me and get it scheduled. But there is no way to know if the cancer has continued to spread in my bones without that scan…so if I can’t get it then what do we do? I have no clue. I don’t want to continue this chemo unless I have to, but if there is a chance it is still in my bones, then I think we have to keep going until we know for sure. I’d rather be safe than sorry. We see Dr. Rado on Thursday before my chemo, so I guess if I don’t get my bone scan by then, we will talk about what the next steps are going to be until I can get the scan. And since it is a nationwide shortage, it’s not like I can go elsewhere. No one has the isotopes. It really sucks.

On to happier matters. Peyton found a dentist that she really likes and hopefully her dental experiences will improve with this new dentist. She has serious dentist phobia thanks to the inept dentists over at Willamette Dental and their poor dental techniques. She needed a cleaning and wanted to go to Caldwell Dental since they have a retail store in their dental office. She figured that the retail store fit with her personality and it must be a good dentist if he has a store that sells cute clothes. Whatever, it works in her mind. So we went to Caldwell Dental and she really liked him. It is a beautiful office, and Dr. Calwell is, well, beautiful too. Very easy on the eyes, Peyton thought he was gorgeous and awesome, so she has found a dentist she likes. She has to have a little cavity filled next week, and she said she can do it, no problem, so I am hoping for a simple and easy appointment with no drama. I can’t take her, but she said that is okay, she’ll be fine. I sure hope so…

So pray for isotopes. That is my next great need. And once we get those isotopes, pray for a clear scan!!

Halfway Through

Mike, his family, my parents and I all did the Ribbon River Walk yesterday to benefit the Tri-Cities Cancer Center. There was a one mile and a 5k. I attempted the one mile, but didn’t make it all the way and turned around quite a ways before the ½ mile mark and lumbered on back to the start line. I didn’t feel right even taking the “participant” ribbon that they handed me at the finish line since I couldn’t even make it a mile. But, oh well, at least I participated. By the time I got home I was exhausted and slept most of the afternoon. When I got up I tried to eat a little, but I just was feeling so crummy that food didn’t sit with me well. So I laid on the couch for a while watching TV hoping I would feel better. I never did.

Last night Mike and I were supposed so join some friends to celebrate the Persian New Year and I was really looking forward to the gathering. Needless to say, I didn’t make it. I called and reluctantly bailed, wishing her a “Aid-eh Sho-mah Mo-bar-ak” and begging for leftovers today, she is an incredible cook and was making a lot of traditional Iranian dishes that I am sure are absolutely amazing. Maybe today I’ll be able to sample some of the leftovers! I’m still feeling pretty puny, my stomach is upset, I am extremely weak and feel like I have a mild version of the flu. Even my hands are achy. I am hoping I didn’t catch anything being around all those people yesterday. I live my life pretty normal, but forget that I really don’t have much of an immune system, so anything that is floating about out there could really put me down. I try to practice good hygiene, hand sanitizer and vigorous hand washing, not touching my face, but sometimes no matter what you do, you catch the crud. I’m not sure if I am coming down with something or if this is still just the chemo doing its job. I have felt so much better this round that I just expect to continue to feel better, so when I start going backwards like this I’m not sure what do to!

I’ll take it easy today. Jessie is coming over, but Houston will be here so if I need to rest, I can just go lay down and rest. The day isn’t looking too wonderful out there, cloudy and a little rainy, so I hope that Jessie is able to get outside and play, that is his favorite thing to do, play outside!! Either way, I get the joy of spending time with him today without all the responsibility. Houston is the primary caregiver, I’m just providing the house and yard!

I hope to be able to go to work for a few hours tomorrow. I promised I would be in to help with a few things. I could do them from home if I have to, but I’d rather try to hit the office for a few hours, it would be nice to see everyone and to feel useful for a change. It’s hard to feel useful when you are vertical on a couch or bed for more than a week.

Its day 11, so I am more than halfway through this cycle and I have blood work tomorrow. I have to be on the homeward stretch. I sure do hope so. Send good energy that I get to feeling better soon!!

Hopes and Dreams

I love spring. Walking around the neighborhood and seeing the bushes bursting with color, the trees budding, crocus popping their heads above the grass, daffodils shining brilliantly in the sun. My mothers has more than 300 daffodils in her front yard and it looks incredible. Peyton and I love tulips and this fall we are going to plant as many tulips bulbs as we can afford to enjoy next year. One of my neighbors has tulips in their front yard of every color, it is a cacophony of bright colors lining the sidewalk, I love enjoying it everyday. In spring the air smells fresh, the sky seems brighter and bluer. The world seems full of optimism.

Mike and I enjoyed a wonderful jazz guitarist concert last night, Martin Taylor, out at Battelle Auditorium. What an incredible artist. For a small community I am so impressed with the quality of the musical talent that comes our way. I am doubly lucky to have a wonderful man in my life who shares my enthusiasm for artistic events. We love music, theatre, museums and even the occasional hockey game with my parents. Not to mention we like to experience the great outdoors, hiking and camping (although not too rustic for me) and traveling. I look forward to our future together exploring new towns and cities, discovering museums, stopping to read every single exhibit display word by word. Uncovering random and obscure plays and bands and enjoying every minute together as we immerse ourselves into new places and a new cultures. Mike and I are good together, and my future with him feels very optimistic too. I am hopeful that these dreams will come true and I will get to grow to old age with my best friend experiencing all that life has to offer. What more could anyone ask?

Sure I’m scared that my dreams won’t come true and this disease will take me before I’m ready, but I can’t and won’t let go of all that I imagine for my life, all that I want it to be. For Valentines Day I made a “hopes and dreams” jar filled with the hopes and dreams I have for our life together. And I plan on sticking around long enough to accomplish every single dream, fulfill every hope.

And isn’t that what we all want, to live long enough to accomplish our hopes and dreams, and to live out the fantasy that we have for our lives. To come to the end at the top of the mountain and to look back on a long and winding road full of pitfalls and accomplishments and smile.

The Losses

As there have been gifts as a result of this disease, so have there been losses. And some days those losses just seem too overwhelming to bear. As much as I want to be strong and persevere through, I have my moments where it would be easier to just lie down and give up. But I know that is not an option, I have too much to live for, too much to keep on striving for. I try to remember that these setbacks are only temporary and that things happen for a reason, but when I am in the moment, all reasoning disappears and the loss takes on a life of its own. It bears down on me with its crushing weight and I feel I would collapse under the pressure were it not for the sheer will to survive. So I crawl out from under the mountain, dust myself off and regain my footing again so I can keep on going until the next disappointment falls upon me, then we play out the scenario again. I don’t know how Mike sometimes can persist in putting up with me, the ongoing sickness, the tears of desperation that he seems to be continually wiping away. But he stands by me, solid as ever, my rock and many days, my salvation as he rescues me from the darkness, never letting me slide too far into the abyss that threatens to engulf me.

It has been said that to the world you are just one person, but to one person you might be the world. There is so much truth to that statement and the reality of it has become evident as my sickness has progressed. Mike and I mean the world to each other, together we are formidable opponents. Solitarily, we are each one tiny person in a vast and uncompromising world, but together we can stand against the mightiest foe, a fortress that cannot be broken. To say that Mike is my strength would be a great understatement, for he is so much more than that, my power, my positive attitude, my bright light, my angel.

He has kept me afloat again this round as the chemo beats down my body and the circumstances pummel at my spirit. Disability is an unfair system and at every turn it feels as if I am discovering some new aspect that I didn’t realize before. Just when you need your benefits the most, they are taken away, just when you need your income the most, it is delayed. And so I struggle through each day determined to make all the ends meet, determined to take care of my family, but knowing that Mike is by my side and that most likely, he will end up taking care of us as I fail at this endeavor no matter how hard I try. The system is not designed for single parents who have no one to lean on, no one to pick up the slack. And so I thank God for giving me Mike who is the Oz behind the curtain, making my world a reality I can survive in.

This round has not been as bad as last, I’m able to get around better and have even been outside enjoying the sunshine. I planted some pansies a few days ago in pots on my deck and in my front yard but being out there makes me realize how much works needs to be done and I’m just not sure how I am going to have the strength to do it all. Sophie has been very destructive to my once beautiful yard and flower gardens, so the work has doubled as I must clean up from the winter and fix all of Sophie’s damage with new plantings and secure fencing to keep her out of each bed until she can be broken of this terrible digging habit. I want so much to work in my yard, it is one of my favorite things in life, but I fear I lack the strength needed to engage in such physical activity. Maybe by next week or the week after. Before I get hit again April 1st with another round of chemo. Then all bets are off again during such a critical spring planting time. I hate this disease.

So I have made it to day 9 without major incidence and am hoping for good blood work on Monday. Hopefully, my white count will be up and I’ll be able to stop the shots of neupogen and start to feel better again.

Finding the Gold

I spoke yesterday of my box of cards. I spent some time last night reading the cards that line the walkway of this journey and was humbled by the words of love and support, by the sheer number of people who have reached out to me, who have shared of themselves and given of their hearts. Words of encouragement, gifts of prayer, personal statements of faith and friends offering up their inner selves in an effort to connect with me and lift me up. And connect with me they have. And as I trace this journey back to the beginning I realize that I had no idea how many friends I have, how many people who love and support me. What an incredible gift that knowledge has been, to know with certainty that there is a tangled web of support comprised of outstretched hands and loving arms which have held me up and carried me through when I was no longer able to walk myself. You, my friends, have been the messengers of God, acting as His hands and His feet, carrying His words from His mouth to my ears. What an honor it has been to be the recipient of that gift, to witness the actions of the Father through the deeds of my friends. I stand before you, humbled and grateful for allowing yourselves to be the tools of God. My heart has been peeled open and the layers ripped away revealing nothing but pure love, for you, my friends, my family, the network that helps sustain me.

This is one of the gifts of cancer. There are so many things that have been negatively impacted, so many pieces of my life that have been taken away, its hard to believe that there could be any positive aspects to this disease. But anyone can find a silver lining behind the darkest cloud if they just have the patience to wait for the storm to pass. I may find that I am simply in the eye and there is another tempest coming, but in this time, the light comes out and the truth of the voyage becomes evident, the reality of all that I’ve been through appears, and I can see the light and the dark intertwined together, creating a blueprint of life. For life is the intermingling of day and night, good and evil, peaks and valleys.

So although not everyone will experience a life threatening illness, and thank goodness for that, everyone experiences all the ups and downs that life has to offer. The goal is to find the gold amidst the dross and to fashion it into something beautiful.

Still Plugging Along

I have a shoe box, Naughty Monkey of course, that is full of cards that I have received since I started this journey. The box is filled to overflowing, and I am going to have to start a second box. Whenever I start to feel down, I’ll open the box and just start reading the well wishes that people have sent me. Each card is in the envelope in which it was received and dated the day I received it. So, like Hansel and Gretel, I have a trail that leads me back to the beginning of this journey. If I follow the cards, I’ll go back to where it all started. This has not been an easy journey, and each word that has been spoken in loving support or written from a heart that cares has been cherished. Not only have those words encouraged me at the time they were received, they have continued to support me when the times got dark and cheer my heart when the heaviness seemed overwhelming. These small treasures have helped to carry me through.

I continue to plug along through this round of chemo. The nausea is still minimal and I am able to eat small simple meals. But if its not one thing, its, the pain is taking its toll on me this round. My legs and particularly my hips hurt terribly. I have to find just the right combination of pain medication in the right dosage to bring it down to a dull ache from the raging roar of pain as it screams at me. I have tried both heat and cold to dull the pain and I don’t think either really helps, but heat seems to be more soothing, so I apply a heating pad to my hips while I am waiting for the pain medication to kick in. Once I get it under control, I can usually keep it under wraps for quite a few hours before all the sudden it rears its ugly head and the roar of pain is back. And then we start the cycle again.

I working my way through Season 5 of The Gilmore Girls and enjoying the romance between Lorelei and Luke. Too bad she screws it up in a future season, but for now, ah, the beauty of a budding romance. I think I have seen all the episodes at some point in time, but it is so enjoyable to be able to watch them all sequentially and see the story develop. As before, I am too tired to really spend much time on the computer writing or with my nose in a good book reading, the pain medication has dulled my senses, so TV seems like a good alternative.

I still haven’t heard when my bone scan is going to be. The CT is already scheduled for the end of the month, but the bone scan is all contingent on availability of the isotopes. Christy is supposed to call me near the end of the week and let me know if I got scheduled, so I’m keeping my fingers crossed. Get these last two scans out of the way and move on with my life.

For now, its one step at a time. One day at a time. That’s the best I can do.

Plugging Along and Doing OK

I am finally back in the land of the awake and coherent. After sleeping the better part of the weekend, I realized that it was my new pain medicine that was turning me into a zombie. Plus, it didn’t even work that well. The pain in my hip started yesterday and was bad enough to put me to the ground. I hadn’t had hip pain like that for months. It is caused by the shots to boost my blood counts but I just couldn’t get the pain under control. I finally switched up the pain medicine this morning and the pain is now down to a dull ache, thank God. I am going to switch back to my old pain pills, and although I have to take them more frequently, they seem to work better and don’t make me so sleepy.

The new kytril anti-nausea patch is working great. I have experienced some mild nausea, but nothing compared to the previous rounds of Ixempra. I am not eating full meals or anything, but am able to eat toast, cereal, fruit and mild things like that. It is so nice to not be sick to my stomach all the time like I was previously. I talked to the nurse today and I’ll switch to a new kytril patch on Thursday, so hopefully I will sail through this entire round with minimal nausea. Could I be that lucky?

All things considered, this is the easiest round of Ixempra so far. It is still worse than the carbo/gemzar combination, but nothing compared to that first round and a marked improvement over the second round. I am achy, weak and tired, but have felt good enough to catch up on Season 4 of the Gilmore Girls and am moving on to Season 5 today. I haven’t had the energy to do much of anything other than sleep and watch TV. Reading requires more concentration than my tired mind is able to give, so I’m really glad I have some good TV to watch. Thanks to Peyton for giving me the entire Gilmore Girls for Christmas.

I wanted to catch you up and let you know I am still in the land of the living. This small amount of activity has left me exhausted, so its time to go rest for awhile. I’ll check in with you again later. But so far, so good.

Sleeping

Day four and still kicking.

Ok, maybe not kicking, but I am slowing moving from one piece of furniture to the other. This round has left me exhausted. All I want to do is sleep and so that is what I have been doing, sleeping.

Friday I felt okay, just a little tired but was able to get around pretty easily. Yesterday the exhaustion set in, I went to bed and that is where I have stayed ever since. I slept almost the entire day yesterday and all night last night. I am forcing myself to stay awake now, even though I am completely ready to go back to sleep again. I figure I need to stay up at least long enough to get my shot, then I can go back to bed.

The achiness and flu-like symptoms have been pretty constant. I wake up regularly to take my pain medications to stay on top of the pain. If it gets ahead of me, I’m going to have a hard time catching back up. I am on the anti-nausea patch but have still had quite a lot of breakthrough nausea that requires me to take medication. Then I get too much anti-nausea medication and it gives me a headache. So, be nauseas or have a headache? Quite a choice.

This round feels different than the previous. I don’t feel as sick, but am completely, overwhelmingly, exhausted. I don’t have the energy to do anything. The effort it takes to do this blog is almost more than I can handle. All I want to do is go back to bed and sleep the day away.

So I think I will.

GREAT, no AMAZING news!!

Do I have great news, or what? Hold your breath and hold on to your hats…

THEY ARE CONSIDERING MY LUNGS OFFICIALLY IN REMISSION.

Yes, that is what I said. REMISSION. Want to hear it again??? I want to say it again, scream it at the top of my fully remissioned lungs, MY LUNGS ARE IN REMISSION!!!! AMEN, HALLELUAH, PRAISE BE TO GOD ALMIGHTY!!!

Wow. I am so overwhelmed that I am still not believing it. So let me back up and tell you the story. I saw Marlene, ARNP, today and had a list of items to discuss. I started with better pain management, moved on to enhanced anti-nausea drugs, then covered the recurrence of the lymphedema. Stalling for the arrival of the question; the 800 pound gorilla sitting in the room…wanting to know, but afraid of what the answer might be. I had a lung CT a few weeks ago and although they were looking for pulmonary embolism, of which they found none, thank God, the radiologist also indicated “no evidence of nodules or tumors.” So we have been wondering…does that mean clear or does that mean, compared to last time no new nodules or tumors? Marlene joyfully gave me the great news, what I have wanted to hear with all my heart, the latest CT gives me an ALL CLEAR on my lungs. She declared my lungs officially in remission.

So, what next? There are still the bones metastases to consider and, since all they scanned was the lungs, we still need to look at the liver, abdomen and pelvis for tumors or metastases. The current plan is to do another CT at the end of the month to allow this dose the maximum time to work; but only scan the unscanned portions of my body and also complete a bone scan. We need to pray that we are able to do a bone scan, because apparently there is a shortage of the isotopes that are used for the bone scan, so Kadlec is only doing bone scans on Saturday’s and they are only scheduling one week in advance. The medical assistant will call Kadlec late next week and hope they are able to get me in for a scan. WHEN all those scans come back clear, yes I said WHEN not IF they come back clear, then I will do one more dose of Ixempra and be DONE. Yes, I said DONE. And DONE signifies that I am able to go back to work and get on with my life. I can’t say thank you God enough. I want to fall prostate on the floor and cry sobs of grateful relief for His mercy.

What all this means is that I am potentially a few months away from the end of chemotherapy. I would still continue with the bisphosphonate drugs every four weeks to strengthen my bones and prevent additional bone metastases. But that I can handle, piece of cake. One 20 minute infusion that might cause some mild achiness for a few days. Compared to the hell I have endured, this will be a walk in the park.

I can’t believe it might almost be over, its too good to think about, too amazing, too overwhelmingly wonderful for words. I wish it could have been in February before my benefits ran out, before my group life insurance was lost, before I had to go per diem. But, everything happens for a reason and I have to think that there is a reason for the timing of this cancer and if I was meant to be done last month, then I would have been done. For some reason, I needed this sabbatical, this dose of reality, this reminder of what is important in my life. I have to reflect on what this cancer has bequeathed upon me, what obstacles has it removed, what lessons has it given, what doors has it opened and where is my heart now compared to over eight months ago when this all began. For cancer is a journey, I have climbed mountains, scaled vertical rock walls, walked through valleys, forged rivers, fought rapids and waded through streams. I have been broken, victorious, defeated, exhausted and overwhelmed but I remain courageous and triumphant. I am making it. One step at a time; grasping hands and hearts of those who have pushed, pulled, carried and dragged me through. For this is not a solitary expedition, but a trek through unknown territories filled with fear and uncertainty but bathed in the warm glow of the love of my friends and family. It is a united and collective effort. And for that, I am eternally grateful. I know with unfailing certainty that I am loved. Not only by my Father in heaven, but by multitudes of people here on this planet we call home. My heart is filled to overflowing.

I still need your strength. For this journey is not completed, however I see the finish line looming on the horizon. Let’s cross it together, our heads held high and our hearts joined as one.

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.