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.

Two more to go. .. . . . .

Friday October 17th, I had a PICC line placed in my upper arm. The experience was not as painful as I was anticipating. It was very interesting to watch the nurse use an ultra sound to first locate the vein she wanted and then watch as she used it to guide the PICC tube right where it needed to go. Of course, my veins wanted to shrink and hide, but she did a great job in keeping me comfortable.

Monday October 20th I had treatment without all the vomiting or nausea I was always working myself into. How wonderful to not have to worry about the many needle pokes. I really wanted to be able to complete all chemo with just an IV each time. I don't completely remember my reasoning, maybe just to say I did it? But why continue to suffer and make my nurses suffer trying to find a good vein?

I returned to the usual three plus days to recover. Today is Thursday and I am just fatigued and feeling "blah". I am so looking forward to having a good day tomorrow and begin to finally get my winter garden started. I am a little behind schedule but broccoli and cauliflower like the chilly weather we have coming very soon.

Well, two more treatments to go in this "Little Bump in the Road we call Life". I remind myself often that yes, I have Cancer, but Cancer does not have me.

Each day we are born again to start our life anew. What we do today is what matters most -- Buddha

What have I learned . . . . . . . ?

Sorry for the long delay on updates. It has been a busy couple of months.

Only Three Treatments left - YAY

What have I learned this far . . . . . . . . . .?

Chemo is no joke. I am not as strong as I thought I was going to be. I will recap a couple of my recent days in the infusion room.

Chemo Monday Sept 8th. The nurse hit a nerve while giving me an IV, I had stabbing, burning pain running up my hand. Screamed like a little girl. After that I was overly tense so they gave me an Ativan to calm down. A second attempt in my other hand was unsuccessful as well. Finally was able to get an IV in my arm and begin treatment. It took me all of five days to feel better. It is taking well over a month for the nerve pain to heal. :(

Chemo Monday Sept 22. What a horrible horrible day. I now begin to get ill on the ride to the hospital. I take anti-nausea medication prior to leaving the house, but that doesn't matter. We start the game of trying to find a good vein for my IV. Success after two attempts. I took my hospital medication and worked hard at keeping everything done for at least 20mins. Then the vomiting started.  I made it through three of my four medications. While receiving the fourth I began to have uncontrollable shaking and chills. My oldest tried rubbing my arms, helping me walk around, holding my vomit bag, etc. She is my rock star and has gone to most of my treatments with me. After more vomiting and the nurses wrapping me up like an Eskimo in warm blankets, I was discharged to a wheel chair and sent home.  I did nothing but sleep for three days.

My son supporting me. He is a sympathetic vomit-er, but held it together on Mom. :)

Chemo Monday Oct 6. Another tearful day. I requested a nurse with a large amount of IV experience, hoping I would be poked only once today. Well, he got the IV in but also caused a small bruise. This allowed for my first medication, A: doxorubicin (Adriamycin®), also called "The Red Devil" to leak a little into my tissue. I was not aware of how serious this is. They had to move my IV which took two more tries, administer cold packs to the infected hand, and give me an antidote to protect the area from tissue damage and dying. I returned yesterday to complete my chemo and receive the antidote again. I do not have any good veins left and it took four attempts to get an IV. I return again today for the last antidote and hope we have better success with an IV.  I am feeling ill already. UGH

The charge nurse has set me up to get a pic line. YAY for just one more stab and my last three treatments should be without all of this stress. Hopefully, I can even keep myself from getting so anxious and sick before these last sessions.

August and September have been busy months. Robert started a new job and is much closer to home. We traveled to Utah to pick up my daughter and grand-son to move home. The house is full of never ending activities having a 2 1/2 year old running around. Brytnee started a new job this week and Brandon started pre-school.  I can now get the rest during the day that is very needed. :)

The kids and I have signed up for a cancer 5K in November. Hoping I can still run the whole thing. Bryt is training with me so she can run as much as possible. So proud of her effects to create a healthy lifestyle for herself.  I don't anticipate any PR, just a finish will make me happy.

Hoping to keep you updated better as I am creeping to the finish line.



Remember: This is just a little bump in the road we call life. I need a 4WD to maneuver through the final dirt roads. But the end is near.

Let's Start with Chemo-Brain

Chemo-Brain
The American Cancer Society describes chemo brain as a mental fog; many doctors describe it as chemotherapy-induced cognitive dysfunction/impairment or cancer-therapy associated cognitive change. 

Cognition
... is the set of all mental abilities and processes related to knowledge: attention, memory & working memory, judgement & evaluation, reasoning & "computation", problem solving & decision making, comprehension & production of language. Cognition is by humans conscious and unconscious, concrete or abstract, as well as intuitive (like knowledge of a language) and conceptual (like a model of a language).

For me it feels like I have lost days or hours and can't remember sometimes details of the day before. I start a project and can be distracted easily just by walking into the house and seeing that something else needs to be done. I forget to turn off the garden water often. This leaves the back yard flooded. My excuse - The plants needed a deep feed. ;)~  Words, I can think of a word in my head but have a hard time making my voice create that word into sound.

I have a very patient and understanding husband. He repeats stories for me and we joke about my forgetfulness. I sometimes ask the same question over again. I start many conversations with "I'm sorry if I have already told you this." or "I'm sorry I forgot to tell you ......."  This is all a very frustrating process.

How about a better subject?  Last Friday my son and I took a day trip to Yosemite. We love to hike and the challenge of the experience. So......crazy me wanted to hike to the Upper Falls. This is a 3.5 mile hike with an incline of over 2000 ft. Let's add the temperature was over 90 degrees as we began our early afternoon adventure.

 Needless to say my chemo filled body would only allow me to make it half way. I was very frustrated and had a little bit of a temper tantrum when my son convinced me it was time to turn around. I am very stubborn. We quickly descended and easily walked over to the Lower Falls. 
 

The water level is very low this year (CA in a BIG drought) and we easily climbed over the large boulders to the bottom of the falls. The water is very cold but Cris still accepted the challenge of swimming across to get a picture directly under the falls. 
He has done this before during a camping trip we took with friends many years ago. Afterward, we had to take the most difficult route back to the trail. That is just the way we are, pushing the line to see what we can do.

Our adventure Friday was strenuous but left me with that sore all over feel good kind of sore. Makes me feel alive during this "little bump in the road we call life"