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.