My New Marathon

My New Marathon

Sunday June 21, 2015 7:30pm

The marathon before the marathon. Sitting in my hospital bed on the eve on my discharge. So many different emotions I am feeling. Excited, relieved, over joyed, scared and even sad. Why sad? Maybe because I am beginning a brand new chapter. A chapter I do not yet completely understand. I leave behind the old me and in many ways that makes me sad. I leave behind this very small room with my bike, my garden below and the familiar routine that for so many days has been a little bit of a comfort. A relationship with each of my nurses, who have all been amazing. The attention from the brilliant doctors making their rounds every morning. What has changed since the day before, what is new today and what can I expect maybe tomorrow. This time the tomorrow is to say good by and I hope to never see you again. Never see you again - and that makes us all happy.

Scared of what is to come and excited at the same time. In the many pages of my journal I have archived my daily adventures. Mostly to help with my memory loss that has plagued me during my many months of treatment. These past weeks have been the hardest part of this journey. Now it's time for the marathon. A marathon of healing. Unlike other races a marathon must be attacked with a slow and steady pace.

I run a 5k race with intensity, always pushing to increase my personal record by the slightest tenth of a second. I am running a new marathon, the marathon of life, this requires a slow and steady pace. Healing comes daily but slowly. You win your marathon with patience. My marathon of life pushes me to improve my physical need to run a footed marathon. I will record each small step I take as a victory over my last step. The hours I sleep are strengthening my new immunity. Today I will walk the block and every day after. Adding steps as my body allows.

Patience will allow me to win my marathon of life and RUN my marathon on foot.

The Garden Below

Deanna Perich

Outside my window in the garden below

I look for the gnome that must live in this beautiful garden below

Keepers of the shrubbery and foliage below

Mischievously encouraging the frolicking fairies

Hiding beneath the mushrooms below

Can you find the gnome that lives in my garden below?

Side Affects - - The GUTS

Tuesday, June 16, 2015

Side Affects . . . . .

I have read a few good books and blogs that talk about a person's journey through their cancer treatment. They write about the exhaustion, the nausea, and many other side affects of cancer. They also explain how important a positive attitude is and having a good support system. This is all very important. What I have not found is a real life, in the middle of my journey, guts of their treatment. Now, I may have skipped over a few and some have described an individual unpleasant affect, but that is not what I am talking about here.

I have been on this cancer journey for over a year now. 1 year and 14 days to be exact. If you would like to be more precise, I have been ill for 1 year, 8 months and 20 days. After my diagnosis with Classic Hodgkin's Lymphoma I immediately turned into a fighter, a survivor, a warrior and the list goes on. The list has many positive words and many negative words, because fighting for your life is a really ugly thing to go through.

Today I am going to talk about the guts of my journey, the Side Affects.

Nothing can prepare you for the side affects. You are warned about mouth sores, neuropathy, and sensitive skin. For me, I have spent a year without side affects plaguing most of my treatment.

Let's get some of the easy ones out of the way
.
Hair Loss - I was a typical girl upset about losing my hair. And to be honest, I am still upset.

Nausea - I knew there would be lots and lots of nausea no way to get away from this one. But staying ahead with medication made it bearable.

Insomnia - my beautiful enemy. Many a night we have shared and many more to come. My insomnia is not victim-less. Robert awakes with caution, wondering what crazy project I may request he help me with or what mess I have left in the family room. Pinterest has become my midnight friend.

My little Stanford calendar is full of moments taking up space in time. We entered the BMT Unit, eleven days ago and so much has happened. The side affects have been far more difficult than anyone could imagine. I was given three days of intense high dose chemotherapy before receiving my transplant. It took about three days for the chemotherapy to raise its very ugly head and provide me with everything and more I had previously missed.

Mucositis (mouth sores) started first. I cannot even put into words how painful this is. By definition it is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. My lips, tongue and esophagus are swollen and covered in small ulcers. When your care team reminds you to maintain your saline rinses please do so and then do them again and again. I have a constant medication drip with an added self dosing button. The medication helps with most of the pain, but only time will be able to heal.

Yesterday, I finally began dealing with neuropathy in my feet. On top of that my skin has broken out with folliculitis. What are these two big words?

Neuropathy - the burning and tingling of my hands and feet at the nerve endings. I have this fun tingling feeling on the soles of my feet.

Folliculitis - the hair follicles on my back, chest and head are freaking out. Kind of like having acne everywhere. It is itchy and blotchy.

My day goes pretty much like this. Take a shower to be fresh and ready for the day. Even my shower entails some kind of special routine. Cover my catheter so it doesn't get wet and use my special microbial pink soap on my extremities to be just a little extra clean. Apply special foot cream to feet and put on socks to help it soak in. Have nurse apply a different prescription cream to my back, chest and head. Take all morning meds. Eat breakfast, but wait you can't eat so you try to swallow yogurt or warm tea or jello. Love my menu selections. Begin mouth care. Rinse with saline solution and use sponge toothbrush to gently brush your teeth. This feels like I am scrubbing road rash, but inside my mouth. Look at self in mirror. OMG what a mess. Ride my bike for at least 15 minutes. Dr's arrive for rounds. Sometimes there are 4-6 doctors, sometimes just two. Lots of questions, lots of answers, OK see you tomorrow. Take my vitals and what is for lunch. Protein drink or soup and tea. Tea helps my mouth feel better. Oh can't forget to rinse my mouth again and again and again. At least 5-8 times a day. No more, just keep rinsing your mouth. Enjoy visitors, ride your bike again, try to eat some dinner. Evening meds and binge watch some show on Netflix. Forgot about all the restroom breaks in between my busy days. Everything needs to be measured and accounted for.

I leave you with the GUTS of my cancer journey. Stay tuned for the GLORY. Because without the GUTS there is no GLORY.

Day one down

I read a book by Jim Davis "My Cancer My Faith" he wrote about the transplant process. It gave me a simple understanding of what is happening inside.

After receiving several days of high dose chemo you receive your stem cell transplant. This is very quick after your last chemo treatment. Why doesn't the chemo attack your new cells? --- Answer -- The chemo itself attaches to the fasting growing cells within 24hrs after being infused. After that period their is very little "active" chemo left in the system, most have already attached to cells and the active destruction takes place over the next 1-5 days. So when the stem cells are reintroduced into the blood stream they are relatively safe and can begin their migration into the the bone to begin the rebuilding process.

While the rebuilding begins slowly, the destruction is in high gear, so for a short period of time the body cannot replace cells as fast as they are being destructed and the count falls.

Your body is a very interesting and amazing thing. During this journey I have learned new limits and expanded some.

I am on day two in the hospital and it is a rest day. Chemo last night was difficult, but the nurses gave me good drugs to help the horrible side effects. I have always tried to do any chemo without the steroids, I hate them. But with the side effects of high dose chemo they are a welcomed necessity. So, today is a better day. Waiting for the doctor's to do their rounds. Stanford is a teaching hospital, that means rounds include a small entourage of interns. Think of Grey's Anatomy but with interns at a higher level of training already achieved. So, hurry up with the rounds, I need a walk and to explore the outside surroundings before it is isolation time.

Winston Churchill asked "What is your aim?" . . . . Victory, victory at all costs, victory inspite of all terror; victory however long and hard the road may be; for without victory there is no survival.