Positive Progression

Today, while I was running I thought a lot about how I have progressed after my transplant. In +133 days I have almost regained my weekly mileage from before I became ill. Not running at the same pace I used to, that is a little frustrating, but I am running.  I talked to myself about being more consistent with my running. I have a theory that if I keep running and adding miles, I will remove those leftover chemotherapy poisons quicker. This really may not be the case, but it still makes me feel better. In reality, it is the running that makes me feel better.

Sunday is day +136 post transplant and I will run my second 5K race since. I am hoping to run a little faster than last month. I did not feel I could push myself on my first return race, a little nervous about it all, but this time I am excited.  A race a month, building up to a half marathon on my 1 year anniversary.

Today, I also think about my oldest daughter. Her father passed away a few days ago at the age of only 52. He was an alcoholic and his body could not manage the constant abuse any longer. She was young when we divorced. It comforts me, as well as her, to think about the good memories. He was not able to escape his demons but he did provide some good memories.  I don't think I will ever understand the struggles of those that cannot over come. But I do have compassion for what they are going through.

The unconditional love for my family and will to live keeps a fire burning in my soul. I use that flame to push myself through days when I really don't want to do anything. On days that I am reminded of the cancer journey I have completed and still must travel as a survivor.  My memory still plays tricks on me and exhaustion will decide I need to be reminded I am still healing. I give into the exhaustion and sleep. Sleep helps you heal. But the memory, the memory I fight. Our brains are amazing organs with the ability to heal and repair many things. I couldn't will myself to cure cancer, but I can will myself to recover as quickly as possible.

I have said before, don't let an illness be the reason you BEGIN to do better, begin NOW. Enjoy your family and friends more, enjoy life more, exercise and eat well.

Wow, how time flies . . . . .

Wow, how time flies. I reviewed my past post and remember that dark place I was at on July 6, 2015. That was just 25 days post transplant. There have been some ups and downs since then. I am so thankful I have had more ups than downs.

My husband and I were talking one evening about this miracle we have experienced. The miracle that medical research has enabled so many sufferers to experience. How thankful we were that I am still here. We confided in each other a fear that neither of us had talked about before.

I was so very scared having massive chemotherapy and a stem cell transplant. But not scared of the actual process or recovery. I was terrified my treatment would cause me to lose me, the me that my husband fell in love with, the me that my children so unconditionally loved and after that I was terrified of what I might become. Thankfully, those fears did not become reality. Today, I am still the same stubborn, tenacious, impatient, goal oriented, never good enough for myself person I was when this all started.

You may think that one cannot experience the journey of a transplant and not have some kind of change? That is probably true. I cry a little easier, feel a little deeper, appreciate my friends and family more. I was a clean eater before but have become an even healthier eater now. I push myself more when feel a little left over side effect try to creep in. My personality does not give way to dwelling on what has happened. It pushes me to not forget, but to file away the horrible experiences in the very dark files of my memory.  

A paragraph from a book I read in May. It explains a lot.

Cancer cannot and will not define the rest of my life. I refuse to be paralyzed by what-if's or to live in anticipation of my inevitable demise. It will, for some period, occupy a rather prominent place in my consciousness, but I will not permit it to consume me or the members of my family, who must also cope and adapt. It will be given it's due priority, no more, no less.

I am so very grateful I have been able to begin having my normal again. I was released from Stanford on Monday June 22, 2015, one day earlier than expected. On Tuesday I began my new routine. I walked everyday, even when I was exhausted and by July 20th I was again running. I pushed myself carefully, protecting my weakened muscles but I became stronger everyday. I had a goal to run a 5K on my +100 days post transplant. On Saturday Sept 19, 2015 I accomplished my first goal and ran that 5K with a time just over 34 minutes.

Today, I have registered for a race per month leading up to a half marathon on my one year anniversary. Your mind and body are amazing machines. For me, I survive but letting go, not forgetting but letting go, of the portion of my life that Hodgkin's Lymphoma as occupied. Cancer cannot and will not define the rest of my life.


I finish today's post with my ending paragraph from May. I like what I was thinking then.

Cancer is an amazing disease, really it is. It is a true competitor, it has only one goal and that is to destroy, to take over, to ultimately be the WINNER. What it cannot do is understand the strength of the human body or the strength of the person it is trying to invade. Our bodies are made up of so many incredible defenses. At first cancer thinks it is winning. Confusing all of our cells, having them attack it's foreign existence. It knows that the body alone will not conquer the violence it has ensued upon our cells. It is arrogant and immature. Cancer does not know there are outside forces waiting to stop the violence that has begun. The body it has chosen to invade has many allies. There will be casualties, millions of white blood cells will die as this war begins. Small battles are fought and many small battles are lost. But this is not the end. The generals have seen this enemy we call cancer many times. Cancer has educated our defenses. And the army of doctors, nurses, friends, family and the all important YOU will win the war.

You can have black days

This morning as I think about updating my blog I refer back to an entry in my journal. It was not a happy entry and I usually do not share some of my thoughts or feelings when I find myself in this little black place. But, today I think it is important.

It has been just over a year of non-stop treatment for Hodgkin's Lymphoma. I finished my first six months of the chemo cocktail ABVD, the standard treatment for HL and usually a cure. We were very optimistic. I had handled treatment very well and even ran a 5K race with my children to celebrate.  Little did we know I would only get a few weeks of feeling done before finding I still had HL and my next treatment path would be a new cocktail of ICE followed by a stem cell transplant. I am now on the recovery side of this craziness and as I have said before, starting my new marathon.

There are so many good days but, occasionally I have to allow myself to feel some of the anger. Earlier in June I wrote in my journal about a morning I was feeling sorry for myself and impatient about everything. I reread a quote several times to try and bring me out of my funk. "Always remember that your present situation is not your final destination. The best is yet to come." On this morning I just did not feel it yet. My days at that moment we spent walking just enough that I was not too tired. Searching for food that might taste good. Needing a four hour nap and then waiting for Robert to get home and spend time with him.

That day in June I was mad and lonely. Nothing will be the same again and I am afraid of the new normal. The pages of my journal vary greatly. All the many feelings that cancer causes. Mostly, I am positive and write so that I do not forget. I remind myself that I am surviving this not just for me but for my family and especially for Robert. For US.

Today, Monday July 6 2015, I am in a much better place and I have made so much progress in such a short period of time. My goals continue to improve and change, sometimes daily. I am still impatient about many things. But happy for so many more. This is the last week of real confinement. Saturday ends the need for a mask every time I leave the house. Walking daily with a mask on is bothersome. I have been able to quickly increase my walking distance with out being overly tired. My daily naps rarely go longer than an hour. Food has finally begun to have taste again. In general, I feel good.

This leads to more frustrations. I still cannot clean my own house, no gardening and crowded public places are still dangerous for another 30days. There is so much to look forward to and I have set myself some goals. These goals get me back to me, the me that keeps me the happiest. This isn't the old me, because she is unable to exist any longer.

1. Continue to walk daily and increase distance as my body allows.
2. Begin 5K training July 20. New me, new program. Still walk on off days
3. Run 5K race September 19th. This date is also my 100 day mark. An important celebration of my life.
4. Continue running and work to compete in half marathon June 2016. One year post transplant. 

These are MY immediate make me feel good goals. Writing them down gives me renewed energy. I have many things that will change and have changed due to my experiences. I will spend more time with my friends. They bring a different kind of happiness outside of my marriage happiness. Do more with my husband and see more. Play with my grand-babies. Watch, listen and enjoy the small things. 

As you read this I hope to pass on a simple message. One that will inspire you to take action sooner. Don't wait for a serious illness, that in your mind you think won't happen to you or a loved one. Don't wait for the tragedy. Take action now and enjoy you more, your partner more, your family and your friends.

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.