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.