Watch Wendy kick Leukemia's ass!

The Journey Continues

 

The other day I realized that it has been many months since I wrote an entry for this blog. I have come to the conclusion that I no longer need this to keep others up to date or to journal my experiences. What started as a way to keep my family current on my health situation became a cathartic release and hopefully an educational tool for others, but now I feel it is time to continue on my journey privately.

Next month I celebrate three years cancer free. My family and I are still picking up the pieces of what’s left of us and still adjusting to a forever changing “new normal “. My health saga will never end but I am here to experience it and everything else. Thanks to my loved ones, friends, amazing medical professionals, and my donor I’m continually adjusting.

Thank you to everyone and anyone who took the time to read this blog. My hope is that I have touched or helped at least one person along the way. It’s positive to me to think that I turned the parasite, a force for evil, into something good if only for a moment.

I can not share everything that I have learned along this journey. Each of us has our own journey to follow. But I will say that I am not the same. In many ways, I’m happier than before my diagnosis. I’m bolder and more flexible, I discovered creative talents I didn’t know I had, and even I am surprised by how strong my spirit truly is. Im not saying this is why I survived. Through the course of this blog I have lost dear friends to the parasite. Their spirits were stronger than mine and they fought harder; I just got lucky. I’m just surprised by my own will and inner power. It’s amazing what the human spirit can endure.

In closing, I would like to dedicate this blog to my husband and daughter. My knight, my true love and best friend- I will love you forever and always. My shining girl- someday you will be old enough to read this. Then you will know how very much I love you and what I did to be with you every second I have been granted. Every sound, smell, sensation, and trial I endured was for you. I fought to be your mom and intend to keep doing it for as long as my luck lasts.

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Russian Roulette

It’s been awhile since I have written a post so I thought I would share some of my news.
On the medical front:
Ever feel like playing Russian Roulette? No? Me neither but as usual I don’t have a choice. I am at a critical juncture with my GVH from now until the next 6 weeks. I have weaned off two meds and infusions and we are waiting to see if a treaty has been signed. Recent tests show the Allies are still at 100% and chest X-rays show very little fluid. All good signs. But the pressure is on. I have pulled the trigger and I am waiting to see if the chamber is empty.

In the meantime, I am working hard to not just witness but experience life. I am working out an average 4x a week and have discovered a love for yoga. Who knew? I have made some amazing new friends and am practicing new knitting techniques. Wow! I’m a regular gal who works out and plays mah jongg If you don’t count the other stuff.

On an unhappy note, the parasite continues to plaque close friends and rear it’s ugly head. Insidious bastard. It injures me without even being in my home. I am trying to use my new knowledge for good and help where I can. Giving advice to a friend on how to navigate the Penn or wait anxiously for test results with people I care about is not on my fun list. Navigating the cancer universe is a skill not everyone has and nobody wants. All I can hope for is the ability to be supportive and maybe make my friends feel less alone; even if it’s just for a few minutes.

Yesterday my family lost a kind and generous man. William Deibler was nothing but a gentleman to me and always asked about me during my struggles. He was one of the most intelligent and interesting people I have ever had the pleasure to talk with and I will miss him. My thoughts and love are with his wife and children as they adjust to the new reality.

Wow! This is just the last two weeks! I hope your weeks have been slow and uneventful.

Want to help but don’t know how? Donate blood, swab your cheek, or call a friend who is living with the parasite and really listen. They need you.

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Happy Rebirthday?

October 28th is my rebirthday. Two years is a significant marker on my way to being free of the parasite. Drs report that there is a large jump in statistics at the 2 yr mark in my favor. Some days I feel like celebrating and other days I want to hide under the covers.

Before my SCT I was provided with a lengthy seminar, 3 ring binder, and counseling about what may or may not happen to me. My oncologist reported many of her patients lamented doing the transplant at all because of the state of their health and life after. Let me be clear. I am glad I had my transplant and thrilled to be living a version of the life I knew. But the state of my health and knowing I will forever be a medical experiment depresses me.

I am forever grateful to my beloved family, my incredible donor, and expert medical professionals. Without them I wouldn’t be here having mixed feelings. Their selfless acts and loving support have shown me how fortunate I am.

Sadly though I can’t negotiate a peace. The allies and rebels refuse to even speak and they fight on. I have symptoms or side effects drs have never seen and everyone just shrugs. My new normal is a day consumed with meds and taking care of my health. It’s more than a full time job. But I’m not just a patient now. I’m a mom, a wife, a daughter, a sister and a friend. There are many other things I need and want to do besides consuming more drugs a day than food.

I want to quit but 1 missed medicine or appointment and I’m off kilter. Everyone with a chronic illness experiences this but I hate it just the same. I especially hate it because I am adrift in a medical world with few options.

My rebirthday is bringing up feelings and memories I thought were long gone or would never be remembered. Flashes of horror sometimes appear; the tests, the therapies, the hospital stays and the looks on my loved ones faces. These memories will never disappear. I wish I could shut them off like the facebook memory feature. I have blocked the last two years online but there’s no feature for that inside my brain or those of my knight and kiddo.

But again I was rescued and at the right place and time. My sister in law suggested our family join Light the Night. The Leukemia and Lymphoma Society hold these fundraisers every fall around the country and she found one nearby. I think she has those mom psychic powers; I call it spidey sense. She arranged our team and I can make this rebirthday date more about family togetherness and less about my traumas.

Thank you to all who have helped and supported us during the most difficult of times and continue to be there. We are grateful beyond words. Please consider continuing to help others. Swab your cheek and join the registry, donate to an organization of your choice, give blood if you can, or call a friend that makes your spidey sense tingle.

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Dream a little dream

This week I marked a milestone in my slow journey to recovery. I walked on the beach at OC for the first time since the summer of 2013. I may be unable to stay long or get my arm wet, but the dream of a ocnj vacation still lingers. When I felt the ocean on my feet I cried tears of joy.

I know that I have a long way to go. The war is still raging on inside me and the Allies and Rebels are not interested in my pleas for peace. The drugs are not working and the new one they want me to try was denied by my insurance. Meanwhile, the drugs I’m on are making me sick in new and annoying ways. But the coolness of the water rushing over my feet was a slice of heaven. A reminder of a life I could live in the future. I am forever unplugged from the Matrix; but Neo can still go on vacation sometimes right?

For now, my knight, kiddo, and I are enjoying day trips. We have been exploring sites within a 2 hr drive and really enjoying ourselves. We have explored caverns, lighthouses, and new restaurants. We have been to flea markets, craft shows, and hope to see a few more sites before the summer ends. Not all of my suggestions are met with enthusiasm, but we are trying to make the best of our time together.

In other news, I had the privilege of meeting several conquerers this week and the owner of cancerbeglammed.com. Check out the site when you have the chance. It’s a directory for women going through cancer treatment and products to help them feel more comfortable and happier with themselves. I wish I had found it 2 years ago. There are great tips on the site of what to gift someone going through treatment as well. It’s an eye opener.

I hope you are all enjoying time with the people you love. Wherever you are, whether on vacation for a week or 1 day, make the moments memorable. If nothing, I have learned that it doesn’t matter what you are doing as long as you are together.

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The Matrix

On June 2 I will celebrate two years in remission. Take that parasite! I’m one bad chick and I’m not afraid to say it. I’m kicking leukemia’s ass! I am a conqueror!

Of course I wouldn’t be here celebrating without my knight, brave kiddo, generous donor, and intelligent amazing medical staff. They helped me banish those cells and I am forever grateful. If only I could banish what leukemia has left behind. It leaves an icky sticky residue.

You see, for the uninitiated, cancer cells may be removed but their effects linger forever. If not in the form of physical side effects from treatment, than in psychological ways. There is a mourning period after you survive. Weird right? But you and your loved ones mourn the life you had before cancer. The delusional life that permitted you to believe that tomorrow was certain; that even next week was guaranteed. All us conquerers know that we are different now. We are no longer plugged into the Matrix. We understand how fragile we and everyone around us really are.

We can easily recognize those that are still plugged in and sometimes I admit the urge to unplug them too. Of course I can’t and would never try. But being Neo gets lonely sometimes.

For now I will enjoy my 2 years in remission. The Allies and Rebels have not negotiated a peace yet. But I am hopeful that we will find a regimen I can maintain for however long it takes.

To help me celebrate, think about giving blood today, donate to LLS, or call a friend going through this and offer a listening ear. They need it. Even if you are still connected to the Matrix, you can make a difference.

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D-day- April 12, 2016

 

This is the anniversary of my diagnosis day. The worst day of my life. I can’t seem to shake it. All the memories, upset and the fear just keeps coming back. I feel surrounded by it and worry I’ll drown. You think that I would be grateful that I am celebrating another stinky anniversary but I dread this date just the same.

I look all around me and what it has done to my family my friends and my life. The parasite is no joke. It infiltrates everything around you. It tries to get into your soul and into the soul of the ones that you love. No matter what I say to myself it doesn’t seem to help. April 12th just sucks.

So I’m putting this message out there in the hopes that even one person will listen. Please take a moment on the 12th and donate blood, join a transplant registry or ask someone who can, or donate to a cancer fighting organization of your choice. Even better, help somebody going through this. Ask them if they need groceries, a ride to the store, the doctor, or play date for their child. Maybe on your lunch break, give them a call and ask them how they are and really listen. Please help me make April 12th a better day.

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Adrift no more

 

I will not play at tug o’ war
I’d rather play at hug o’ war…
And Everyone Wins
What a whirlwind! This GVH ride is no joke. But for the first time in 2 years I no longer feel adrift at sea. Floating randomly in any direction with danger at every turn. A solid medical plan can make a gal feel secure.

I am armed and ready with the team I trust the most in the world. The doctor reminded me when I fought against the current treatment that I am not fighting cancer anymore. Now I have a chronic disease and the disease, however uncharted, does have a protocol. This part is familiar territory for me. Years of fighting crohns and all the yucky blucky therapies I did to live a “normal” life are not much different than what I’m doing now. It’s just different yucky bluckies and truthfully scarier because they require an oncology team.

I met a patient while in the Penn who calls herself a cancer conquerer. I like that so much better than “survivor”. She changed me and I will be forever grateful. She reminded me that we are all fighting something; that there is a world out there we are trying to get to enjoy and it’s worth conquering our demons to get there. So move to your opposite sides Allies and Rebels. The ambassador has been sent to negotiate a peace. Then I hope we can all learn to just get along.

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A new boxing glove

 

The results are in and my veins stink. I’m caught in a civil war and I need to be armed to protect myself. After much thought, crying and cursing, I agreed to get a new boxing glove.

The medications for my gvhd sap the magnesium from my body daily. I can’t replace it orally so I have to get daily home infusions. That means I need a picc line. Now where did I put that cover? Good thing I kept it.

Bright side- no sticks or vein infections for awhile. Down side- I have a picc and need daily infusions. Guess Ricki the IV pump and I will be bed mates again. Move over shining knight because we are now a threesome.

Our hope is to get a peace treaty signed in a few months and I will have my arm back. Everyone please pray for armistice. I need to get ahead of this and figure out how to negotiate a peace.

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Got in the wrong line

 

Whoops! I did it again. I thought I was in the exit line for this amusement park but i got in line for another ride. Welcome ladies and gents to the whirlwind of the GvH!

First some definitions
Graft v host disease occurs when newly planted cells (heretofore known as Allies) recognize host cells (heretofore known as Rebels) as foreign. In other words, the cells declare a civil war.

Serositis is the inflammation of a membrane. In my case, my heart and lung tissue among other major organs.

Got that? Good. Please explain it to me because I’m lost on this ride and can’t find the stop lever.

After a transplant, some host cells always remain in some tissues, skin, gi tract, eyes, etc. My strong wonderful Allies are not comfy yet and found the Rebel base.
The Rebels (a fighting tribe of factions that have been aggravating me my whole life) are annoyed to find the Allies exist. Hence, a civil war has begun in my body. Gvh can take many forms but in my case it’s decided to appear in the rare form of serositis. I mean 2% rare. It results in pericarditis, pleural effusions, and an overall collection of fluid deep within my tissues otherwise known as third spacing.

Positive side- while the Allies are armed and dangerous the likelihood of them eradicating any errant cancer cells is high. If I can live through this war I am confident that the glorious Allies will triumph and plant their flag. Go Allies! FU Leukemia!

Meanwhile, I have to figure out how to survive the civil war. My form of gvh is not unseen but it’s barely researched and sparsely documented. It could also kill me. I’m fighting for my life all over again.

Drs are back to scratching their heads and giving me a cocktail of immunosuppressants to slow both factions. I’m back up on the dread pred and trying to put other more manageable meds in its place for when I start dropping the prednisone again. But Drs don’t know what works with serositis in the long term.

At least with leukemia there was a studied well researched protocol. Drs knew which drug to give me when and in what order. I did it all and kicked the parasite to the curb. But this gvh is all new terrain. All SCT and BMT patients are walking experiments but this is getting ridiculous.

I entered the hospital last week with a return of the civil war and was promptly placed on prednisone. I was given another immunosuppressant to help calm the factions and an antibody infusion. I was discharged and returned within a day and a half with hospital contracted infections. Never stay in the hospital when you are immunosuppressed. You are bound to catch something nasty.

So now my life is put on hold again. Next week my knight and I had planned a vow renewal in honor of our 15th wedding anniversary. I wanted the Allies to be committed to him under the chupah just like the Rebels were 15 years ago. Every cell inside me belongs to him. But alas, this civil war had other plans. Lucky for me my knight knows I am devoted to him in every way and no ceremony will enhance or prove that. It just would have been nice.

Meanwhile, life goes on around me. We lost a dear and beautiful cousin on Friday. A true mensch to everyone he met. Stann, you will be terribly missed. You were my friend and showed me nothing but kindness and love. It’s a great loss to my family and his dear wife and children.

I recognize now that Mindfulness is the only true path. I am brought back here again and again. Living in the moment I am in and stepping forward one step at a time. The moments are what truly matter. Whether you spend them in the hospital on FaceTime or in the arms of your loves, make them worthwhile.

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Nothing is routine

Today I had my annual mammogram. I have been checking on fibroadenomas for the last few years and I didn’t have to wait till age 40 to experience this lovely treat. For those of you avoiding it, make an appointment and stop being a wuss.

Anyway, for those who have, you know the drill. You have the test and then they show you to a waiting area while the Dr. reads your pictures. The tech comes by and tells you to go or they tell you something you don’t want to hear. Sometimes you need more tests or you need to retake an image in the vice or the dreaded referral to a surgeon.

I was fairly calm. I always get sent home. But not today. Today I needed an ultrasound of each fibroadenoma. When the tech came in and said “follow me” all I could think was “you are going in the wrong direction. The exit is the other way”.

During the ultrasound I calmly asked if the mammogram pictures had been ok. Even though my panic was rising I did my best. The tech said she didn’t know. Btw, they always know. They just aren’t allowed to answer most questions. This one wasn’t biting.

She finished the ultrasound and told me that the Dr. would soon be in after he took a look at it. Once she left, I lost it. I found myself rocking back and forth, crying, and batshit scared.

You see, once the parasite has invaded, it knows you. It can find its way back to you because the trail is already there. My chances of getting cancer again are higher than someone who has never fought the parasite. The drugs I took to kill it in the first place can bring it back in another form.

I managed to get a hold of myself right before the Dr. came in to tell me everything was fine. But once he left I started crying again. It was a mixture of relief and sadness.

Sadness because I will never be able to shake this fear. It might lessen over time but it will never truly leave me. I will forever be the patient who needs more tests, more specialists, and more referrals. Drs will continue to look for the parasite and I have to submit to this. Everything is suspect and I will never have another routine Dr. appointment again.

Other survivors tell me it gets easier. The more time that passes the less I will cry and assume the worst. It’s a price I am willing to pay for kicking the parasite to the curb but it’s rather high.

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