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.