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.