Sunday, August 4, 2013

Trying to achieve the "new normal"

After a pretty traumatic experience at UCSF, both times being there for three weeks at a time, and having every side effect hit me like a ton of bricks, all I longed for was to be home and to start living my normal life again. I had such high expectations for myself. I guess that was my first let down. 
Departing June 26th from the hospital was bitter sweet. Definitely more sweet, but I couldn't help but to be bombarded by all the negative thoughts that came along with the huge ordeal I just went through. 
First, I still had to pretty much be secluded and taken care of at home for about a month. I really didn't like this idea. I just wanted to focus on taking care of myself, and I felt guilty somebody else would have to step up again. 
Second, the Dr.s said it would take lots of time to heal. And to not expect to do regular energy level things for months! I couldn't believe that! I usually bounce back really quick after every chemo I've ever had. But I should have listened. They were right. Fatigue is horrible, Hot flashes make me want to kill something, and I can't handle not being able to be "normal"!
Normalcy is going to be something I'm going to have to define on my own right now. For me a good normal day, is a day I don't feel like crying or puking for that matter. A day where maybe I can go for a short walk and not be upset that I couldn't go further! I can't let other people's fun filled day ruin my day, just because I'm so jealous that they can go out and do that activity right now while the weather is warm and perfect! It's all about my perspective at the moment. But it's really getting to me. I just want energy back. 
As if these little side effects couldn't play a big enough role right now in recovering, the more concerning side effects are now coming into play. 
I'm sitting in my local hospital right now suffering from pneumonia and BCNU lung poisoning. I can barely breathe without oxygen. I've already been here a week trying to get better to go home. I've never had to be on oxygen this whole time I've been going through this Cancer shit hole I've been living through. It scares me. Will my lungs clear up well enough so that hopefully one day I can start doing the activities I want to do in the future?! Right now I just don't know. 
I do know this: I'm over Cancer and everything it has touched and consumed in my life. I need a break! I'm so tired, of being tired. I feel so much older than that of what I am! I should be laying in some sand or by a pool right now, not in another hospital bed!! I'm praying every night, for one day this will be over. I know it will happen. But hopefully sooner than later. 
For now my "new normal" is organizing the crap load of vitamins and prescriptions I take everyday and choosing a name for the oxygen tank I will be lugging around for the next few weeks at home. And trying to cope with new side effects from the extremely high dose steroids I'm now on from lung damage. Yay cancer life!

Tuesday, June 25, 2013

New Life

On June 7th I was admitted again at UCSF hospital to start the transplant process. The first night they told me my port was not sufficient and that I would need a PICC line. They placed the line in my right arm. It was a little unsettling because I could actually feel the tube being fed in my vein which led to the center of my chest, near my heart. 
I started the CBV chemo regimen right away. This therapy was extremely difficult. I now know why the Dr. was calling it "the Bomb"! It literally wiped me out like I was hit with one. At a few different points while getting chemo, I felt like I was crawling out of my own skin. My head felt like exploding! I got sick almost every day. It was awful. For the first time they had to give me drugs through IV to stop the pain and help me sleep a little. My counts dropped to less than zero. I was then ready to receive the transplant. 
Having my new fresh cells being placed back into my body was a very odd experience. They warned me of the "tomato soup" smell, that ended up taking over the air in my room for a few days. The process tickled my throught and I coughed a lot while each tiny bag was defrosted and placed into my PICC line. Six tiny bags, hopefully cured me that day. I now have two birthdays! My Re-Birthday is June 14th 2013. A day I will never forget. 

Picc line placed
My room
Last day of Rough chemo!!
Frozen stem cells
Defrosted cells going in
My sister and I celebrating 

Monday, June 3, 2013

Pinch me, I must be dreaming! Remission?!!

Two weeks after being home from my first three week stint in the hospital, the Dr.s wanted to give me a PET scan to evaluate my status thus far. Throughout my cancer journey every time I got a scan I was so incredibly nervous. I always had a negative feeling lingering in my head, that I wouldn't get the greatest news. I guess it's because I was just so used to being disappointed, and I never received good news. This time I felt powerful! I had no doubt that the scan would come back great. I knew I put in so much hard work, emotionally and physically, and so much time, that this had to be IT!! 
The scan began and I felt at peace. I said my mantra, that I was cancer free, and this time I whole heartedly knew it was true! 
A few hours after the scan I met with the Dr. 
Nonchalantly he said, " So.... your scan came back good..."
"Good? What does that mean!?!" I said. 
"Oh... Complete remission."
WHAT?! I thought, did I just hear that right? I immediately broke down in tears. I asked "are you sure?!" He showed me proof on the computer, I searched for my name first on the report. I had to make sure it was truly me they were talking about!! It was me. I couldn't believe it! REMISSION!! I had been dying to hear that word for almost two years! The feeling was overwhelming! I have been on cloud nine knowing that this treatment is working. 
I am very nervous about going back to the hospital this Friday, June 7th, for another three weeks. The treatment is going to be more intense and when I get home I need to have somebody take care of me for 24hrs and for a month! It's going to be extremely difficult, but I'm going to do it! I can finally say that I am WINNING! It feels unbelievable!!
The day I found out the amazing news! Soo happy!!
Reflecting, at my favorite place

Wednesday, May 29, 2013

On To Transplant

On April 26th, I received the call that I had been waiting for, for quite some time now. There was a bed open at the UCSF hospital, and I needed to come down immediately to start the process of my stem cell transplant. The feeling was bitter sweet. I was so excited that it was happening, FINALLY! But I was very scared of the unknown. Three weeks in the hospital? How would I ever get through this?
When I arrived at the hospital, large orange suitcase in tow, I met my roommate who I would be sharing a room with initially, until my counts dropped from the chemo I'd be receiving, and my immune system would be compromised. She was a very pleasant young lady and her mom was by her side. We introduced ourselves. Her name was Christina. Come to find out, we had a lot in common! My birthday is December 17th, hers is the 22nd of the same year! Her last name is Hernandez, which will one day be mine once I get married! And then we found out we have the same cancer, we are receiving the same treatment and both getting a stem cell transplant! Amazing how life brings certain people into your life, just at the right moment! Her mother, Alba, was there with us everyday. She made the days a lot easier. Since myself and my family live almost three hours from the hospital, it wasn't as easy for them to be with me a lot of the time. My sister fortunately lives in Oakland, less than 30 minutes away, so she was able to be there with me almost every day! I was so lucky and happy to have her by my side because these three weeks in the hospital were pretty rough on me. 
I started treatment (Etopocide and Cytarabine) immediately when arriving. It was 24 hours of treatment for almost five days. I did get sick a couple times while receiving chemo but nothing too horrible. I was able to walk around the "11 Long" halls and meet some amazing individuals battling for their lives! It was quite humbling!
After chemo was over, it was then I started to feel the effects. Major diarrhea, vomiting, fever, and chills! It was the worst flu like symptoms you can imagine. It had been one week exactly since arriving, when I started to feel awful. On Saturday my mom came to visit. I hadn't taken a shower yet so decided to get up since my mom was there. I bent down to reach for my clothes. I immediately felt dizzy and light headed. It was a strange feeling. So I decided to sit on the bed awhile to get grounded again. When I felt better I walked to the bathroom to get into the shower. When I shut the door I felt the feeling again. This time worse! I started to sweat purfusely, I was extremely dizzy, then it all went black. I knew I was going to possibly faint, so I opened the door and laid myself on the ground before I could fall. Luckily there was a nurse in the room. All I remember is kind of waking up and there being 10 nurses surrounding me, drenching me with cool wash cloths, and asking me if I was okay. They took my blood pressure and temperature. My pressure was extremely low and I had a 102 temp. 
Since the blackout happened and I was still having stomach cramping and uncontrollable diarea, they decided to do a CT scan on me. The results came back that I had colitis, an infection in my colon and large intestine. The Dr.s decided that I needed to spend some time in ICU, so that they could monitor me more closely. 
Going to the ICU was the scariest thing ever! The place was so chaotic! Loud noises everywhere. The sounds of numerous heart monitors going off, frightening. The area I would sleep was like being in a operating room. No privacy at all. People next to me literally dying on life support. Then the worst thing imaginable for me, NO BATHROOM! Instead a portable commode. I thought, NO WAY! At this point I had to pee so bad, and tried using it but I just could not let it flow LOL! I threw a little diva tantrum, and freaked out a bit. Ok, I freaked out a lot! My mom finally had to calm me down. Then feeling like the biggest baby, I finally peed! It was a huge achievement for me. 
I was hooked up to several machines which monitored my heart, blood pressure and oxygen levels at all times. I couldn't move a foot without help due to all the wires and cables that trapt me. So, imagine having explosive diarea and having to wait on a nurse to help you, probably every half hour. I'm not going to lie, there were accidents. It was awful. My pride was thrown out the window! But almost two days later I got to go back to a private room! Thank god!
Because I had colitis I was put on a liquid diet, jello and broth for a week. I lost 10 lbs. 
A week later, I was put back on a normal diet by this time and my counts were high enough to start the stem cell collection! FINALLY, I had reached the goal, and I was at the home stretch!
I had to have a neck catheter placed so that they could  retreive the cells. It was the the most awkward thing I've ever had done. I could barely move my neck. I felt like an alien was attached and sucking my blood. But I knew it would be out soon so I dealt with it. They started my collection later in the day. It took four hours to retreive, what I thought was enough. Since it was later in the day, the dr.s weren't able to count how many cells I put out, so they informed me that I would need to collect in the morning again just to make sure they got enough. I was heartbroken. I for sure thought I was going home! That night was the worst. I did not sleep at all. The catheter was very uncomfortable. 6:30 the next morning I started collecting again. By this time, 20 days in the hospital, I reached a breaking point. I couldn't stop crying, I was just done with being there, I needed to go home. After a trying four hours, the nurse finally said "your done with the harvest and you got approximately 15 million stem cells!!" I only needed 5 million! " yay, you get to go home!" Those words never sounded so sweet! I went home on May 16th!!
Being home is great, yet difficult at the same time. Major anxiety set in, just knowing I have to go back. Plus all the side effects that have tagged along from the chemo, like blurry vision, fatigue, nausea, and blistered hands and feet. But I did it. And I am here. 
Neck catheter
Stem cells
The machine that seperates the cells
IV's and platelets I received numerous times. 
Blisters from chemo
Getting Neupogen shots to boost my counts
One of the nicer views I had

Friday, April 26, 2013

Opening My Heart

Wow! Is the only word I can describe how I feel at this very moment. Three weeks ago I was a scared child, that was consumed by intense anxiety and fearful of the unknown. Deep inside I was telling myself that this transplant coming up wasn't going to work. The negativity that was pouring from my tears was eventually going to drown me! So I let it out! The pain was too much. I needed help. I asked for help, strength, wisdom, and guidance. You know what the crazy part is? I actually received it! It was the most empowering moment of my life! Knowing that I can ask the universe, creator, God, whatever it might be that you believe in and actually get an answer back, was shocking and at times hard to comprehend. I never was a "believer". But something told me to let go of the fear I had and start to believe. Especially start to believe in MYSELF! Know that I can do anything I set my mind to. Know that I am not alone. Know that I hold my own fate. Not a dr. With a book of statistics!
I feel so free! Liberated! Clear of pain. I am CURED already!! My mind isn't consumed by negativity anymore. I have a clear conscience. I'm going to keep working on myself, knowing that all these lessons I've learned throughout this journey will never end. There will always be tests and lessons to be had and learned. But now I have guidance. Man, it feels wonderful! There are miracles in this world, but we have to have an open heart! Now I can go full steam away!! And finally beat this cancer!

Thursday, April 4, 2013

Scared Straight

This is the first time writing directly from my chemo chair. Right now I'm getting my last (hopefully) dose of GND treatment.
For the last almost four months I have felt like I've been on an everlasting roller coaster of emotions, anxiety, fatigue and pain. Thus far I've tried to withhold complaining as best I can, but right now I just want this to be over!! My anxiety is at an all time high! I've never felt like this ever throughout this journey of a year and a half. It starts immediately when I wake up and doesn't subdue until I go to sleep, only to repeat the cycle of shattered nerves all over again. I suppose I'm freaking out a little about what lies ahead. Finally I'm ready for my stem cell transplant. I mean, I've been ready for this for months! Why am I getting nervous or anxious?! Maybe because its finally here! I feel like a character in an epic story, finally reaching the monster towards the end that can either make you or break you. I know I will slay this beast, but the unknown of when and how, eat at me everyday.
It comes down to a simple: I'm Scared!
I've never been this frightened of something in my life!
21 days initially in the hospital, getting a high dose chemo then the extraction of my stem cells, is not the part I'm dwelling on. It's after I go home for three weeks trying to recover and going back to the hospital and receiving 'The Bomb', (that's how the bone marrow transplant coordinator described it as) an even stronger chemo ,for another month, that I'm stressing out about! I've heard nothing nice about this part. Intense mouth sores, fatigue to the max and other complications are in store. I can't stop thinking about all the negative things that are going to happen. Why? I've been so good with my thoughts so far. But this hurdle is overwhelming. I'm not the first person to go through this procedure. So many have been through it and have conquered, so I should do the same. I know I have to, there isn't any other choice. I have to fight stronger than ever! I'm trying to prepare myself for the next part of this journey, one day at a time.

Tuesday, March 26, 2013

Successful Donor Drive

On March 18th we held the Donor Drive! It was an absolutely amazing experience! We signed up 65 amazingly courageous people to the database! I felt so unbelievably supported and loved. It really meant so much to me that strangers, friends and family members came to the drive and signed up, to potentially save somebodies life!
Before The drive was held, I was interviewed for two local newspapers: The Ukiah Daily Journal, and The Willits News. It was scary for me to be "center of attention" but I knew I had to spread the word. Because of the efforts of my new friends through the Cancer Resource Center and myself papering the town with the flyer and spreading the word through Facebook and word of mouth, the Stem Cell/ Bone Marrow Drive was a huge success! Thank yous to everyone who came, and to for holding the drive in our home town! I appreciate everyone! Here is the link to my BeTheMatch Page. If you know anybody who would like to sign up, its easy and Free! Save a LIFE!!

Here's some pictures and a short video of the event!









Front Page of the newspaper

Here are the links to the articles written about the drive and myself:


Monday, March 11, 2013

From Cancer to Power

When you think of Cancer what comes to mind? I know for me before I was diagnosed, I would envision a frail, a somewhat emaciated person, hooked up to an oxygen mask, on a tiny hospital bed, swarmed with nurses and Dr.s logging their every heart beat, every minute breath. Death.
I guess I got this perception from movies and television. And in some cases we do see this in "real life". But hardly in my circumstance.
I'm HERE. I'm living. I am strong! I actually don't think I could have said these words honestly and out loud if it weren't for the 'C' word.
Before cancer I was lost. I felt unworthy, disregarded, ugly and just unloved. I never felt purpose. I always searched for what I should be doing. What was it that I was put here on earth for? That is the question that can haunt us for the rest of our lives. And it was haunting me, controlling all emotions. It never allowed me to be free, or to find myself, because I thought I would run out of time, like a character in a video game. And throughout this search I became bitter. Negativity sat on my shoulders like a talking parrot. It said whatever it wanted and didn't care about the repercussions. This negativity pushed me further away from the goal, of finding my purpose.
 I didn't know how to love whole heartily either. I thought nobody could love me with all this baggage, the turmoil I could not let down from my past and childhood. But it was me who kept digging my hole, larger and larger until my back seemed to give out! Then.....Cancer.
I really don't know how to explain it. It was the weirdest thing I can describe. Being diagnosed with cancer was the hugest blow that I have ever endured, and I have been hit with plenty that have left me shattered. If I were true to my past nature I would have let this shocker swallow me up in all the negativity surrounding it. But this was different. I cried, yes, but in a different way. I guess people describe it as an Epiphany, or the light in my brain flickering on. It took me a few days to realize I needed this. This is my chance! This is my time, my time to change. To change what I've previously only known (which is negativity), and be the person I know deep inside I am. To be the person I have always wondered about, and dreamed of being
I didn't know how many people out there in the world, yes the WORLD, that are here to support you.
 I barely had people to talk to before diagnosis. I was always afraid to meet new people. It was out of my comfort zone. I  felt I couldn't be myself, otherwise I would say something stupid and that would put them off. I gave up trying to make friends. I was horrible at conversation. I really had nothing positive to talk about so I wouldn't say much. I felt lonely. Not good enough.
Now that has changed! I have met (mostly electronically) the most inspirational people throughout this journey. I am part of an online support group for Lymphoma patients or caregivers. This forum has helped me gather strength when I needed it the most at times. I am so happy to have found them from the beginning of this journey! In the beginning I was the one asking questions and looking for advice. But now I feel I have taken on that role of advice giver and up lifter. It feels so great knowing I am helping somebody just by encouraging them and giving them some helpful tips.
Although I don't see many of my supporters face to face, it has been remarkable the out pour of support I get from individuals, friends that I haven't seen in years, or strangers that have heard about me! It makes me feel so loved. I have never felt important, but this is giving me a sense of being for the first time in my life!

Don't get me wrong 'C' ISN'T my best friend.
It has shattered my dreams of ever conceiving a child. Something I definitely thought was in my near future, but I now have had to come to grips that it's not. It was a very hard time for me to come to terms with this, but I am now at peace with it. I can see now, that there will be a plan for my future. But I'm not going to go back to old Cierra and try and figure it out. Not going to dwell and stress about it. Whatever happens, happens. Cancer has taught me patience.
'C' has left me heavier, 20 lbs., (AHHHH!), and has taken away my lovely hair (that I always complained about, and took for granted!). But I feel great! Surprisingly, I feel the most beautiful I have ever have! I guess a new sense of confidence is what Cancer so unselfishly gave me!
At times when I am going through treatment, I feel like a big ball of emotions. Sometimes I can't get my butt out of bed, as bad as I would like to, but I tell myself: One day this will be but a blur!
This disease has given me self worth. I am worthy of love, and success. Succeeding was always a nightmare of mine but now it seems like a pleasant dream I can fall asleep to every night!
I want to do more with my life now. Helping others is on the top of my list. Paying it forward. Being somebodies advocate, are just some things I can come up with right now.
I have hope. But the greatest thing I have gained is POWER! I have this power that is ready to be unleashed. I cant wait for my new journey to start and this one to be a memory of how strong I was.
The possibilities are endless for me after I beat this and rise to the TOP!

So now when you and even I, think of cancer, let's tune into the positive! Each person has their own journey but every one that I have encountered has changed into this remarkable person. We now have the tools and the strength to conquer whatever lies ahead!

Thank you to everyone who is a supporter of ME! Without each and every one of you I would not have changed into the amazing person I am becoming!

Thursday, February 14, 2013

My Chemo Tips

I thought it would be helpful if I shared with everyone some of the remedies and tips I use when going through chemotherapy. Hopefully some of these things will be beneficial to another person undergoing treatment!

Having cancer and going through chemo is scary and can cause anxiety. I get anxiety a lot, especially the day before my chemotherapy appointment. I mentioned this to my Dr. and he prescribed me an anti-anxiety medication. I took it, and to be honest it just made it worse! So I asked my friends if they had any suggestions on what I could to take to relieve some of the stress. They told me about this: Rescue Remedy.
The link above will give you the ingredients in Rescue Remedy. This has helped me tremendously with anxiety! I recommend putting it in a small amount of water when taking it in this form.

Breathing techniques also help! You can start by breathing in slowly 5-10 seconds, then exhaling slowly 5-10 seconds. Repeat this numerous times and your heart rate will slow, and relief will start to set in!

When I am receiving chemo and the nurses are accessing my port, they flush it with saline. The saline is hard for me to handle. I can immediately taste it in my mouth and I don't have a great reaction to the taste. Some people don't mind this process, but for me it's one of the things I don't look forward to when receiving chemo. I discovered that sucking on a hard candy such as a Jolly Rancher, or chewing minty gum, helps mask the taste enough to get through the procedure. My nurse also suggested a sucker called Queasy Pops. They come in a lot of different flavors such as Ginger, Lemon, and Peppermint! They are excellent for relieving nausea also!

After treatment I don't feel the best. I feel extremely fatigued. I don't want to eat much and would prefer to 
just go to sleep. Something that helps me a lot with my energy levels, especially after chemo, is juicing and wheat grass! Wheat grass is high in vitamins and has numerous health benefits!
I usually consume 2-3 ounces every time I drink wheat grass. I was told that fifteen pounds of wheat grass is equal in overall nutritional value to 350 pounds of ordinary garden vegetables!!
Juicing fresh fruits and vegetables helps also! There are endless possible combinations that you can juice. One combo I like, and that seems to help with energy and nausea is: Carrots, Lemon, Cucumber, Apples, and the key ingredient, Ginger!
Ginger will become your best friend in your cancer experience! It certainly is mine!
To help with nausea you can consume ginger in different forms. You can juice it, gingered infused tea, or buy ginger chews which will relieve and help with nausea during treatment. Another possibility is to eat ginger snap cookies! My favorite ginger snap cookies are called SusanSnaps! They are delicious! There's an amazing story behind them also! The family that makes these cookies had been struck with lymphoma cancer  three times! 50% of the donations goes towards cancer research – genetic studies
50% of donations goes towards cancer patient gifts
For every $2.00, a gift of gingersnaps is given to cancer patients. 


One thing that I dread the most when receiving treatment, is the taste it leaves in your mouth after! It's a taste that I can't really describe, it's just awful! Things that I do to relieve some of the discomfort of this taste consist of, brushing my teeth numerous times a day, rinsing with baking soda water, or mouthwash. Also I use a tongue scraper routinely when brushing. It helps rid some of the nasty residue chemo leaves on your tongue! Rinsing with salt water can also help with minimizing the chances of getting mouth sores that chemo can sometimes cause. 
Basic tips to feel a little better throughout chemotherapy can also be:
  • Try going for a short walk. Sometimes getting up and moving, even if you feel like you can't will make you feel better!
  • Try and keep your surroundings clean and tidy. Having a clean house will brighten your mood! When using cleaning products try and use scents that put you at peace. I use a lavender infused all purpose cleaner because lavender calms the nerves and relaxes you!

  • Watch a funny movie! Laughter is the BEST medicine!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Feel free to comment and add to this list! What helps you during Chemotherapy?