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.

The Rapids

You know those little games on Facebook that catches your attention every once in awhile? Who is your spirit musician? What's your tarot card name? Or any other little game such as that. Well I was given the tarot card name of Empress of Quiet Waters. Quiet Waters? Are you kidding me? I don't even understand the concept of quiet waters.

I tell myself to listen, listen for the quiet. Maybe I can make my rapids quiet? So, I sit listening, observing, trying to understand the quiet. I find a quote and reread it again and again -

"Allow us to be still, in the midst of what our minds cannot fully grasp, and what our lips cannot fully explain." -unknown

Nothing works. Winston Churchill said - "If you are going through hell - keep going."

I enjoy the rapids, the excitement they bring. The thrill of feeling alive as you are rushing up and over them. During this period of treatment I have struggled with the calm, the quiet, the slow down. This has been a very big lesson in letting go. I do not accept the tarot card name. I can never be Empress of Quiet Waters. I am a fierce grade 5 rapid ready to conquer. I am Spartacus preparing for my next great battle. The war is soon to begin.

A WARRIOR is not given that title because they fight just to fight.
A WARRIOR does not battle only when they know they can win.
A WARRIOR does not choose to fight merely for personal gain.
A WARRIOR fights even when the odds may be or seem insurmountable.
A WARRIOR Never Gives Up just because the rules have changed or the odds have turned.

A WARRIOR fights to not only attempt to win their own battle or battles, but to show future and current fighters that Life Is ALWAYS Worth Fighting For, even if it is just for an extra smile, hug, kiss, or one last chat to set our life's journey in order.

Kick That Cancer Song

Inside My Crazy Chemo Filled Mind

A few thoughts I have had over the past couple of days. I write them down so I do not forget. Losing time and days is still an issue right now. A cruel side effect of getting better. My thoughts here may not make sense as you read them, but they will hopefully make sense to me when I reread what I had been thinking at the moment I documented them.


Friday May 22, 2015

Cancer is a horrible horrible disease. Treatment is cruel and inhuman at times. But cancer can also be positive. You make every moment a little more important, you meet new life friends, you listen to advice with a different mind and actually take positive action on said advice. Your family becomes more important and you wonder why they were not before. You NEVER take anything for granted because every moment is special. Even the moments of treatment become special. They are special because you know that you are one step closer to the rest of your long life without fighting. Maybe you are put on this difficult journey because there was a few things that needed to be put into check? Is this a drastic journey you have been given? Well, yes it is. But we are all given only as much as we can handle, right? So, right now, today, I will thank cancer for giving me new life relationships, for bringing me closer to my family, for making my current friendships stronger, and for making me a stronger fighter.


A paragraph from a book I have been reading. 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 finish today's post with --

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.

Today before you think of saying an unkind word - 

Think of someone who cannot speak.

Before you complain about the taste of your food-

Think of someone who has nothing to eat.

Before you complain about your husband or wife-

Think of someone who is crying to to God for a companion.

Today before you complain about life-

Think of someone who went too early to heaven.

Before you complain about your children-

Think of someone who desires children but they're barren. 

Before you argue about your dirty house, someone didn't clean or sweep-

Think about the people who are living in the streets.

Before whining about the distance you drive-

Think of someone who walks the same distance with their feet. 

And when you are tired and complain about your job-

Think of the unemployed, the disabled and those who wish they had your job.

But before you think of pointing a finger or condemning another-

Remember that not one of us are without sin and we all answer to our maker.

And when depressing thoughts seem to get you down-

Put a smile on your face and thank God you are alive and still around.

Life is a gift - Live It! Enjoy it, Celebrate it! And Fulfill it. 

Author Unknown

Stem Cell Harvest and what not......

I sit looking at this page and for a long time I have no idea what to write. So many times this week my brain has been  on overload with a millions things I need to say. Then the day passes and I have not taken the time to record anything. I must make myself record every moment I can. You see, between the various evil drugs I must ingest and my mind protecting me from such a horrible experience; I lose days at a time. Days that as much as I try do not return.

May is the month of preparation. It started with having my port removed and replaced with a hicc catheter on Thursday April 30th.  Friday, May 1 is a day that my mind has almost completely erased. I received 50x the normal dose of Cytoxan, a very deadly chemotherapy drug.  I remember leaving the hotel, parking and entering the BMT unit at Stanford. I remember my nurse Victor, my sister-in-law taking some pictures, the amazingly comfortable bed. But then nothing. My husband came to get me early in the afternoon. I have no recollection of him entering my room, going to the car or reentering our hotel room. He said I vomited A LOT, I complained about not having a vomit bag and just a darn hospital pail. All of sudden it was Saturday. . . .  and I am back at Stanford. Disconnection of my IV fluids, I don't even remember having a rolling IV pump with me. A long drive home and I sleep. Sleep is such a wonderful thing. You have no pain, you don't have to feel any of the after shocks from the cruelness of chemotherapy. 

The weekend had disappeared and it was Monday. Robert gives me two shots of Neupogen every morning to help my bone marrow produce white blood cells. My white count is at zero and I am in isolation from the very scary outside world. No windows open as the house circulates air that has been filtered twice. I must wear my HEPA mask anytime I need to go somewhere or even to just walk into the garage. I remain isolated in a bedroom while Robert deep cleans the house twice a week. On the sixth day of shots I drive to the lab for blood tests. Stanford is watching for when my white cell count hits 3.0 or better. First day .2 and I begin to watch my platelets slowly drop. Each day I remain the same and my platelets continue to drop. Monday, May 11, my count moves to .3 but the platelets still drop. Tuesday, I finally have good progress white count is 1.3, and platelets are still dropping, UGH. That evening the lab calls to advise I will need a transfusion the next day when I arrive to do labs. Wednesday, transfusion of platelets was easy and my white count is finally at 3.4. YAY. Thursday is stem cell harvest day (apheresis). I am feeling good and drove myself to Stanford. It felt wonderful to have some independence and be outside. My mask was still a requirement, but right now I didn't care. I was in the company of many other transplant patients. We all had masks and would give each other that familiar look as we passed in the halls. I thought about each person, wondering at what stage in this process they were at?

Apheresis is much like dialysis; one line takes my blood through the machine and the other line returns my blood.  

As the machine spins your blood, each different type of cell separates into their little group. Once enough of your stem cells have accumulated the machine will pump them into a bag for storage.The process takes 4 hours. At the end of your 4 hours a small sample of your stem cells are sent to the lab to count the volume you have been able to supply. I need two million cells for transplant and another two million as a back up. It can take 1-5 days to accumulate the volume needed. All day my nurse told me she had a good feeling that I could do this in one day. I heard this over and over. I was not as confident. It took my fellow stem cell transplant friend, Mark, three days. 

I return to the little orange house. Orange house, you ask? Yes, our friend's house is orange and I was fortunate to live there for nine months. Returning there during this short visit brought me comfort while going through apheresis. I arrive at my little home away from home just in time to receive a phone call from the nurse at Stanford. She advised me that I did not produce the 4mil cells they needed. At this time I proceeded to tell her "OK, I thought I would need to return in the morning." She then replied "No you don't understand you didn't supply 4mil cells you supplied us with 10mil cells." What? I asked her not to joke with me. She reaffirmed the 10mil and I was free to eat normal food again and enjoy somewhat of a normal life until more chemo at the end of May. So here I am six days past harvest feeling as normal as a cancer patient can. I am still careful about what I eat and how often I am outside. The windows remain closed and my air circulated through double filters. My grandchildren are still off limits and that part hurts, but it won't belong until Nana can hold them again.

But wait, this is not the end of my post for the day. My stem cell harvest has not been the highlight of my month. Through the wonderful world of technology I met a fellow HL patient preparing for his stem cell transplant. He is a few weeks ahead of me in the process and we have quickly become very close friends. Mark lives across the ocean in England. We talk almost everyday and will usually Skype during my afternoon hours which is about 11:00 pm his time. Through him I have become a little stronger, braver and I think more prepared for what is to come. Our treatment varies slightly because of small differences between the USA and the UK but chemo is chemo and a transplant is a transplant. The pain is real. Mark has been honest throughout his journey and makes everyday as positive as the next. I am so thankful to have him and his wife Andie in my life. I have pasted Mark's blog below. Enjoy his positive energy as we both continue the journey of cancer survival.

https://fonzandcancer.wordpress.com 

And So It Begins . . . . .

April 8th, that is the last time I updated my blog and so many things have happened since then.


On April 13th my amazing sister in law passed away. She had spent her life fighting juvenile onset rheumatoid arthritis. She had such courage and strength. When I am feeling like I want to give up or thinking about "why me" I remember how strong she was. Her endless strength is why I can keep going on.

So anyway, this crazy crazy process called an Autologous Stem Cell Transplant? Overwhelming doesn't begin to describe it. I am so very thankful to be having this done at one of the best facilities in the nation, Stanford University Cancer Center in Palo Alto CA. There is an entire team dedicated to just this process. Giving each patient five star care is an understatement. Every detail is planned and discussed as you  move through each step. Your calendar is filled with dates, times, medications and when to take them. When to clean you catheter, how to shower and how often,  when to eat and what to eat. As I review everything it is overwhelming, but then at the same time it's not. Every step is detailed for you. You know what to do when and how the next step is to take place. The worst part is the waiting. Waiting for your body to react to that one chemotherapy drug so you can get the next drug. Waiting for your labs to show your are ready for that following step. Then you are terrified of that step. The feeling sick, the schedule of medications, the boredom as your day seems to drag.  And all of this is just the beginning of my journey.

May 1, 2015 I had my first round of chemotherapy in preparation of my ASCT. This is done as an outpatient. We go back to the hotel and return the next day for additional IV fluids and then go home.

Six bags of different fluids

Besides all of my medications, my husband gives me two shots of Neupogen each morning to stimulate my marrow. We will do this for about 10 days until my labs reflect I have enough stem cells to be collected. This is called apheresis. It is a simple process that takes about four hours each session. Much like giving blood, your cells are spun and the good stem cells are extracted while the remainder of your blood is put back into your body. If the Neupogen has done a really good job you may only have to do this one day, but it usually takes at least two days and sometimes up to 5 days. Then you go home and rest for a week. You can eat normal again and have a little bit of a life.

During the above process I have to be very careful to stay healthy, hahahaha that is funny since I am battling cancer and not really healthy at the moment. But I have this beautiful mask I must wear anytime I go outside. It keeps all those little micro-organisms from invading my body and causing any little upset of the chemical process that is going on inside my veins.

A few more days of out patient chemotherapy and then you are admitted for the big guns. I am not ready for that day. I have several different emotions when I think about it. As I have said before, you go through enough chemo to feel like you want to die (so I have been told) and then it's transplant day. A process that will take about 10mins. Your life is still so scheduled at this point you don't have to think much, just work on getting better. Three to four weeks in the hospital and a few more weeks at home being very careful you don't get sick. I imagine it becomes another waiting game? Waiting for your scan to reflect you are healthy again, waiting for your lab results, waiting for your doctor to let you return to work, waiting for . . . . what?


I am in the beginning of my stem cell journey and I will not lie, I cry A LOT. I pretend I am OK most of the time, but I'm mostly not. I do rest and I do all those things my long list tells me to do. I smile while getting chemo, I put on that happy face that helps my loved ones know that I will be OK.  But I just want this to be over and to enjoy my family and friends again. I would never wish this journey on anyone.

Stem Cell consultation. . . .

Thursday April 2, 2015 we visited Stanford University Cancer Center for my consultation with my doctor there.  What a plethora of over whelming information. Dr Miklos was amazing and gave us the chemistry lesson of our lives. the short of it. First phase, I go once a week for the first 2-3 weeks for a combination chemo and stem cell boosting session. I leave still hooked to an IV, spend the night at a near by hotel and return the next day to complete and released to go home. After they have been able to harvest enough stem cells, I will then return for the most intense portion of my treatment. Stem cells have been harvested and then the insane chemo begins. I will be given 50x the normal dosages of three chemotherapy drugs over 7-14 days, depending on how I respond. After all of my bone borrow has been completely killed, wiped out, I will then be given my stems cells back and they begin to reproduce my blood and immune system. You may be wondering how will I have enough blood circulating if they have killed all of my bone marrow? The white cells, red blood cells and platelets. Well, your red blood cells live for 100 days, your white blood cells live for 3-4 days and your platelets live 120 days. There may be a time that I need a blood transfusion during this period, but that is normal.

Before all of the above is to happen I will have another bone marrow biopsy preformed, a cardo test on my heart and a pulmonary test for my lungs. In addition, I need my current port replaced with a Hickman port line. The port I have is too small to ensure my blood can pass back and forth without damage. Just another small surgical procedure to add to my list of many.

At the point of stem cell transplant I will have already been in the hospital for at least 7 days. After transplant I will remain for another 14-21 days depending on how I respond to my new clean cells. Dr Miklos guaranteed I would be in extreme discomfort from mouth sores, fatigue, body aches and pains, vomiting, etc etc. They will make me very comfortable with a combination of drugs.

I was happy to hear that part of my team includes a physical therapist. I can have a bike or treadmill placed in my room for daily exercise, which they stress is a necessity during all of this process. Exercise has been my one escape during the past 18mths and what a relief I get to continue while under going a terrible treatment. Give me some time to just zone.

So that is the short story of it all. You know I will update with my real life experience as it happens. Right now I feel great. Have spent the last few days getting my daughter and grand-son into their first real apartment. That has used up lots of energy, but I haven't crashed like I thought I might. I am still enjoying a glass of wine almost every night. All alcohol has to be stopped just before I begin treatment and until at least 30days after I am able to return home. Living in the beautiful wine country in Lodi and not being able to enjoy it makes me sad. But I slap myself and remember this is all worth it. Spending two years of your life fighting for that said life is really a short time compared to what I have left to experience. Cheers to the rest of my very long life!!!

Bitching about it all , , , ,

March 19, 2015

What a very very bad day. I felt yucky, was finally coming off the steroids and had my first really emotional day. Oh, did I cry like a baby about everything. I think the steroids had something to do with my crazy emotions.

Robert and I had a wonderful anniversary weekend planned for May 14th to Sonoma and Fort Bragg. With the good news of my stem cell transplant moving up, we had to cancel everything. This set me off. I had all kinds of emotions. Happy to begin stem cell earlier and terrified of stem cell. Upset we are going through all of this. Pissed that my husband has to be so stressed about everything. Mad that I can't contribute like I used to. Scared of the unknown. Angry that I am unable to visit my very very ill SIL and I may never get to see her again. So mad that I was depressed and crying all day.

I finally got dressed for the day before Robert came home. He has so much to deal with at work and home that I won't let him see me like this. I feed off of his strength without him knowing. I tell him I had a bad day, just leave out the details. Him being home somehow makes the majority of it go away.

I made an awesome spinach salad and he grilled some chicken. A few relaxing minutes on our patio with a beer helped everything be OK.

So today is Friday. I have paid bills and organized our budget a little better. Adjusting to one income for us takes a little bit of practice. I feel good and it is time to clean the house. Music is up loud and if I hurry I can start another fun project before everyone gets home.

Robert and Brytnee are going the Kings game as an early birthday for her. That leaves me with Brandon. My SIL Carol will come over tonight so that Brandon can become more acquainted with her. Bryt will need every extra babysitter she can find in the coming months. Nana will be quarantined.

I am really frustrated right now. I started this post while in the hospital this past week and damn I was on a roll. I was getting down some funny shit. But somehow I lost it all; so let me see if I can recreate any part of my three day experience?

Wednesday March 11, 2015

I was finally given a bed at about 4pm and the waiting game between the pharmacy and the doctors orders began. Until then I was entertained by my neighbor two doors down. His name was Andy and he was a lonely old man. I never found out why he was in the hospital but his family did not want to take him home. Sad.  He was demanding in a sad senior citizen I am alone way. Yelling for everyone and then singing and then yelling again. This continued for my entire stay.  I had another neighbor that was far more disturbing. She had been in a very bad car accident, two broken legs, broken arm and some kind of neck injury. This woman cursed like a sailor, actually I think worse. So, over the top abusive with the nurses. No one ever visited her, she was an addict and there was security with her my last two days of chemo. There was some relief from both these noise makers. Either while they were eating or sleeping. I was very thankful that they slept almost all day on the third day. That woman was just horrible.

My three days of chemotherapy were about the same as I described before. Came home Saturday to a house full of family. Everyone wanting to wish me a happy birthday. It was very nice to see my gran-babies, even if it meant just a little hug after they each passed the hand washing, sanitizing routine.  I feel good my first day home because I am still pumped up on steroids. That first day I can eat everything and I did. Everything tasted like it was gourmet. Lucky taste-buds. The rest of the weekend proceeded as usual. I feel like crap but cannot sleep. It takes about a week for the steroids to finally not have any effect on me. I HATE steroids. Why someone would chose to take them willing is beyond me.

Last night I was not able to sleep for anything. So I set out to complete a project or two. By 4am I had completed my husband's new cork board for his office and made myself a little framed jewelry holder to go over my jewelry box. I even started on one of those darn Pinterest projects, converting a cardboard box into a beautiful fabric covered storage box. I think I might get that done tonight? 

Today has been filled with office stuff. Completing my Stanford University packet. Ensuring the my siblings are able to be tested as a donor if it happens that I can not be my own. Keeping busy while high on the stupid steroids helps my brain not think about everything that makes me sad.  

I am more sad today than normal, though. My sister-in-law is near her end of life. She has struggled with rheumatoid arthritis since she was five years old. This terrible disease has almost completely crippled her. I will most likely be in stem cell treatment when her life ends and I so wish I could be there to celebrate her life. I won't say much about losing her here. It is very painful and I just become a blubbering baby every time I think about it. Having to be sick and not able to see her just makes me angry and it is soooo unfair.

I hope this little blog is helpful to those that may not know me. I hope I am able to give some information or make someone else feel like they are not alone. I am not a fluffy girl that becomes depressed, overly sad, drama, etc. I have had to be a fighter my whole life. I think I have fought pretty well and will continue to kick some cancer ass! Being competitive has really helped me. I don't like to lose and this damn body of mine better understand it has no choice. This body better comprehend that I still have a whole lot of life to live and I will be damned if I won't make it cooperate. 

And this is what I say to cancer:

I have my stem cell consultation on April 2nd. I have a lot of information now but will update after we have met with Stanford. I know my brain is going to be on over load.

A BEAUTIFUL Sunday and the rest of my week

Sunday, March 1, 2015

It has taken a week to feel good after my first round of ICE. Today has been so beautiful. Started by watching my baby girl (23yo) play soccer, began to paint Brandon's thrift find loft bed while hubby was making new drawers to replace those missing. Funny thing, this bed cost $50 and the wood to make new drawers was over $80. Such an awesome find and he will have this bed for years. Made Giada's mixed berry and thyme jam. Can't wait for berry season to really have a punch of fresh picked berry taste. Finally, glued together my serving tray with the wine corks that have been sitting in it for more than a year and lastly have a chicken casserole in the oven. Thanks to the wonderful Patterson Mom's Club and the many freezer meals they provided to us.

Thursday March 5, 2015

I have been busy taking my Nuprogen shots again. As a reminder, this medicine kicks the crap out of my marrow to produce white blood cells. The doc has me taking one shot per day for seven days. The side effects have mostly been headaches, I really dislike headaches. These last couple of days I have felt terrible joint and muscle pain. How lovely to finally be able to escape the insomnia of chemo only to be replaced with horrible pain to keep me awake at night. Did my sarcasm come across in that last sentence? I hope so?

I'll take my labs later today and I can only imagine the insanely high number of white cells I will have. Dr appointment tomorrow. Hoping she can move my date with the hospital up by at least one day. Robert would really like to have me home by Sunday so he can spend at least one day with his sickly wife taking care of her.

Pinterest, whomever created this very addicting site was a genius. I have been able to stay away for a long time, but what else is there to do when you are sick, laying in bed? You got it, explore Pinterest and the never ending ideas posted daily. Today I found a bread machine recipe for Hawaiian sweet bread. What a great addition to tonight's dinner. Talapia, broccoli, salad and fresh made bread.

Well, it's lunch time and I still need to get some laundry done and hope to deep clean our shower.

One ICE down two to go . . . . . .

Let's talk about the chemotherapy -  ICE - Is what I am receiving for the next three months. ICE is the first step in preparing my body for an autologous (receiving my own cells) stem cell transplant in the summer. I am on my third day home from the hospital and still feeling sick. ABVD made me sick but not like this. I feel awful all over, that really blah awful, you can't get comfortable, you don't sleep well, even with medication, kind of awful. 

But back to my original statement in this post. "Let's talk about the chemotherapy." Not a very good subject but one that I can seem to never stop thinking about. Three days in the hospital go something like this:

On day 1  I get a one-hour infusion of etoposide. This wonderful drug causes your blood pressure to drop severely. I was monitored every hour after receiving.

On day 2  I get another one-hour infusion of etoposide and a one-hour infusion of carboplatin. Carboplatin actually stops the growth of cancer cells and causes them to die.  This drug is very harmful for your kidneys and bladder therefore I am also given 15 minutes of a drug called mesna to help protect them, followed by a 24-hour infusion of ifosfamide, another dangerous kidney and bladder durg, and mesna.

And finally on day 3 another one-hour infusion of etoposide. And, when the 24-hour infusion of ifosfamide and mesna from day 2 has finished, I am given a 12-hour infusion of mesna.

I receive mesna three times during all of this. Damn, that carboplatin and ifosfamide are some serious shit.

Three days in the hospital, OMG the food . . . . wait . . . .  I don't know if you can really call what I received food? Thank goodness for carton milk and packaged cereal. And now just the thought of food makes me ill. I am hungry and everything tastes like crap. Even water tastes gross. Yesterday, I had fresh picked cauliflower from our garden. I LOVE Cauliflower but not yesterday.  And a little not so little secret of mine, I use cannabis to help with nausea and all over pain. Well, not even the cannabis is helping food taste good. The frustration of having a refrigerate, freezer and pantry full of all things eatable and nothing tastes good.  AAARRRGGGHHHH!!!  So another sip of water, because it is required, another bite of whatever bland object is still sitting on my plate, because I must not fade away and to end this late night babble. . . . Remember I warned you that this may at times be a lot of blah blah blah.  I just reviewed Days 1-3 . . . .  This is some serious shit.

The bazillion things that go through my head.

Many times as I am sitting waiting for some little chore to be accomplished, oil changes, doctor appts, etc I will write in my little journal I keep in my purse. Below are some of my thoughts. Showing a little bit of what I am really feeling on the inside.

Thursday 2/12/2015

As I sit here getting my oil changed I can think about nothing but the shit I will be going through this year. I am not the type of person to ask "Why me?" There are no why me's - just lets get this done. I am very scared this time. First time I have actually thought about death and what that means. I am by no means even ready for anything that devastating, but who is? So I quickly push this thought aside and work on kicking ass.

I worry more about my amazing husband. Caretaker is the real work. I am sick and only need to concentrate on one thing - getting better. Robert has the stress of me, work, house, the little ups and downs that come with each of our children. There is always so much attention placed on the cancer patient and I don't mean to act as if that is not important, I am very important and my struggle with this crazy disease is serious. But after being a caretaker years ago and no being the patient; it was much harder to be the caretaker. At least this has been my experience.

My first round of chemotherapy consisting of 12 cycles of ABVD was relatively easy. I was very ill for one week and felt good the next. Just in time to start over again. I was able to remain very active and have a good quality of life considering what I was going through. This time I won't be able to do these same things.

Right now, today, this minute I just want to curl up in my bed and do nothing. I haven't ever felt like this before. This kind of depression just makes me angry. I fight the feeling to give in. I am scared of how close I will come to the edge. I am scared for my family and friends  to see me this way. I am even sometimes scared of not having enough strength. I am thankful to have Bryt and Brandon home. Brandon helps keep me going. I allow myself to take over with him a little more than usual so I can stay away from that awful feeling. I appreciate that Bryt let's me do this. I won't get to love on my gran-babies as much while going through this crap. We have to be very careful now. I CANNOT GET SICK!!

Children have this remarkable power to help you feel better. They have a sixth sense about illness and an endless supply of love and compassion. My gran-daughter Emma just amazes me with how much she understands Nana is very sick. Always having a gentle touch for me.

Tuesday 2/17/15

Today is a new day and I feel better than yesterday. I have that determination back and ready to kick some cancer ass. Thursday is the beginning of the next chapter.

We are getting the guest room set up and organized to be my room during those feel horrible days.

In all of this I will miss all of those gran-baby loves.

And the next chapter begins . . . . . . . .

Where to begin?

It was probably early December 2014 when I felt the first familiar twinge of pain in my spine. I thought to myself that I was imagining it; I was being overly sensitive. The rest of the month continued as it should. We were having a great Christmas and I was cancer free. New Year's Eve we went to a party with our friends. Awesome dinner, champagne, desserts, dancing, celebrating my new freedom and positive outlook for 2015.  Saturday, January 2, 2015 normal day for us. Lots of little chores around the house that we always enjoy. I don't remember what we made for dinner, but Robert loves to cook so I am sure he prepared something great. I made us our usual before dinner cocktail and then it happened. One swallow and minutes later I was having a painful attack in my spine again. I can't explain what I felt at that moment but I knew it was back. 

I emailed my primary doctor right away. His response was quick and an MRI was scheduled immediately. My primary doctor has been my greatest advocate. He has looked outside the box when I have become the most frustrated. He has ensured that I receive quick care every time something new comes along. This time was no different.

MRI showed that the mass on my spine had returned to almost the same size as when this all started. Another spinal biopsy was scheduled. Once again the initial results report indicated an infection. I met with an infectious disease (ID) doctor. Robert and I both expressed our disappoint and concern over what we felt was a bogus diagnosis.  The ID doctor referred most of our concern to my oncologist. I was given a huge supply of antibiotics again. The next day it was confirmed that my Hodgkin's Lymphoma was back. Just as we had suspected.

My oncologist was retiring and referred me to a new doctor closer to home. It was a welcomed relief when he called me and asked if I would mind switching to a Hodgkin's Lymphoma specialist. Well, of course I want a specialist. My new Onc is awesome. She has done trials and research with Stanford University, the #1 HL hospital in the nation. She is aggressive and doesn't hold anything back. Just how we like it. 

She explained I have recurrent HL, this is when the disease returns within a year. Mine is more serious because it really never went away. So onward to the next regimen. ICE followed by a transfer to Stanford for a stem cell transplant. 

ICE - 

Ifosfamide

Carboplatin

Etoposide

Three days in the hospital followed with 21days off. We will do this three times and take an eight week break. I will then be admitted to Stanford for my stem cell transplant. This is the part that scares me the most. They will take my blood to harvest my stem cells. I will then go through conditioning, this is intense chemotherapy to prepare my body for the transplant. What I mean by intense is killing everything in my body and taking me to the edge of death. After two weeks of this I will receive my stem cells and remain in the hospital for approximately another 2wks. The real work begins when I am released to come home. A long road of recovery to regain health and strength.

I think this is long enough for now. More to come soon.

Post Chemo . . . . .

I wrote the below entry in December 2014. I wish I would have taken the time to publish it then. So I am posting it now and will follow up very quickly with what the next chapter has developed. Not a cancer free life yet, but additional very scary hurdles to jump.

It is barely over one month since my my last chemo treatment. CT Scan and PET Scan done with my oncologist advising I won't need another scan until March 2015. But how do I feel?

I have become more emotional than during treatment. Is it the fact that I am now in full blown menopause in my mid-40's or the overwhelming feeling of beginning the next chapter?

I think constantly about what I have been through in the past year. What my family has had to endure in 2014. I don't remember if I had said I was once a full time care giver of a now cancer survivor. Having experienced both sides of this horrible disease I can honestly say, that for me it was harder being the care giver. Someone else may have a different view, but I just think about what my family and friends have been through. With that said, there is no denying how difficult the past six months have been. The exhaustion, nausea, frustrations of needing help, not being able to work (my children would tell you I have always been a workaholic), and now? Now I have to begin the next chapter.