Same ole' song & dance......with a twist

Well, the time has come. I'm starting another round of treatment. I'm actually on the chemo throne right now. My port is accessed, and a concoction of toxins are being administered as I type. A horrible feeling is surrounding me from head to toe. It's a feeling of disbelief and disappointment. I can't really understand why I'm still here. Why I'm still on this journey. My anxiety is on another level!  But I guess it is what it is. I just have to stay strong to get through it once again. 

 

This morning the nurse asked if this was my first time getting treatment. I said "no, actually I've been doing this for awhile. Going on five and a half years. Three years of chemo and a two year break, now back at it."

She looked at me with a very sad face, because she couldn't believe everything I've been through while being so young. Everyone around me is over 50 at least. Some tell me, "you shouldn't be here. You don't look sick. You're too young!" I know! I feel the same way! Haha! But there's got to be a reason. I'm holding on to that. 

My son screamed as I left him with his grandma today, and I of course started crying. I don't want to be away from him. He's my everything. I have to live for him! I'm praying this treatment gets me in remission fast so I can move on to my Allogeneic transplant! Which I have found out that I will need an unrelated donor. My brother was tested and he was a 0 out of 10 match. My sister was also tested and she was a 1 out of 10. So they cannot use either as my donor. The good news is, the database holds 5,000 10 out of 10 matches for me! That is incredible! Hopefully they will find the perfect person to help me beat this once and for all!

But for now I'm doing two days a week, every three weeks with this chemotherapy. Praying so hard this is it!!

I'm back, it's been so long!

It's been so long since I've posted a blog, I don't really know where to start! My last post in 2014 I was dealing with some residual disease still invading my chest. I had a mediastinoscopy of my chest and all the lymph nodes that were recovered and tested turned out be non-cancerous. I was so relieved!!! That was in June.
So going back in time..... after transplant I went through a lot! I was told I would never have children, and I was going through medically induced menopause. It was the worst feeling. But I kept praying, my fiancé at the time kept his faith about the situation, and my church prayed for us. In October a miracle happened! I was pregnant! All my doctors were shocked!! "This wasn't supposed to happen" they said! But it did! I was the happiest I ever had been in my whole life! So was my family!
Ricky and I got married on 3/14/15 and I was six months pregnant. It was beautiful in every way!
Life was great! I got my port out because I thought I wouldn't need it anymore. I was done with all things cancer related! DONE! Then on July 18th I had my miracle baby boy, Abel! He was perfect in every way! He is still perfect! He's my light and strength! I'm so blessed to have him! Sometimes I still can't believe I'm a mom!! It's all I ever wanted! A dream come true! And I love it!

 

  
So I had been in remission since July of 2013. I was 

just living life, getting stronger and better every day. Spending precious time with my son. 

In August 2016 I felt a small lump in my neck. I immediately thought it was back. The beast was back! NO! Please no, ran through my thoughts constantly!
I then had a CT scan that revealed a mass in my chest, nothing came back active in my neck. If it wasn't for me feeling anything in my neck I probably wouldn't have known I had cancer again, until it got bad. So after three years of remission I'm back on the cancer saddle again! Somewhere I don't want to be. I'm going to be starting chemo again soon and most likely will be needing an Allogenic transplant, one with a donor this time. My brother will be first to be checked to see if he's a perfect match. And if not they'll search the national database for my perfect donor! Another long road I'm walking down at the moment. There's some really scary dark turns I'm about to face. But there's also this light guiding my way! I firmly believe God has all my plans in his hands!

Picking up the pieces

Last Wednesday, on June 25th, I received a pet scan, one year after SCT, and the results were shocking.

 My oncologist revealed that I have two spots in my chest that are lighting up pet scan positive, meaning cancer. 

I can't believe that this is happening again! Just when I'm feeling better, I'm getting my life back together again, it hit me like a ton of bricks!

The image that is constantly in my mind is this ultra intense green. The cancer in my chest resembles this toxic green waste. I can't get it out! It's like a demon possessed twin, that thrives on making me miserable!! I have dreams that I rip open my chest and literally pull this creature out! I want it gone!

It's so hard to know that something foreign is in your body and you can't do much about it. I really do not want to do more treatment. It has taken it's toll on me! I'm going through menopause because of my stem cell transplant. I have intense headaches a lot. Dreams have been shattered. My lungs are shot, they are not what they used to be. It's hard for me to breathe at times, and I know I'm really susceptible to getting sick after chemo now. 

I'm going to try to do everything in my power to stop the growth of these tumors in my chest. I'm praying to God every day that he stops this. That he relieves my anxiety and the fear, that I'm going to have to go through another battle. I hope to just continue with my life and move forward. 

I'm now waiting on a pulmonary doctor to see if the tumor is large enough to get a biopsy off of. The doctor wants to make sure it's still Hodgkins  lymphoma. If it's not large enough to be biopsied I will have to wait a few months to see if it has grown or not. I'm praying so hard that it will not grow any larger! 

I know God has a plan for me and this just might be part of it but I'm so done with cancer!

I'm not going to give up! I'm going to put together my shattered pieces and keep going. I'm going to continue to live my life. I'm going to continue to fight this. I'm going to continue to be the person that I am now. I'm going to continue to trust that I am worthy of being healthy!

My Testimony

A year ago, on April 20th, I was feeling defeated and lost. All the chemo, and different regimens that I had had for the last year and a half weren't working. I felt like I didn't have any hope left. The feeling of a dark cloud that followed me everywhere was very overwhelming! I was home alone all day and was crying endlessly. All of a sudden I got on my knees and cried out loud. 

"If there is a God, please help me! Give me a sign that I will be ok!"

I had never begged like that before. And I didn't even consider myself a believer at all. My whole life I thought I knew that there was no God. I'm not even certain why I cried out for him. I calmed down and put my broken pieces back together as best I could. 

Literally hours later, that sign I asked for happened! I wept at the occurrence and the fact that WOW I can't believe that just happened! From that moment on I prayed. My chemo actually started working! And miracles have happened! 

I know I'm only living and here because of my faith in God! 

If it weren't for my trials of cancer I'm not sure if I would be where I am today. So I'm actually grateful that I had to go through that journey so that I can have a relationship with The Lord!

He has been answering prayers ever since! And I sincerely love my life and all the people He has brought into it!

Update Day +260

I haven't blogged in a while. I guess because I've been at a loss for words these past few months. Or maybe I just don't have the right definitive words to describe how I've been feeling. Ill try my best to explain. 

From being hit by pneumonia twice, (the first time being so incredibly scary) my breathing was very short and I hardly could walk down the block without feeling like I just ran a marathon! This was the most difficult thing because all I wanted to do was to just get in shape and be active! It took me months and months to finally get my breathing somewhat normal and under control. I still get pain in my lungs if I push myself hard, but I also feel that's why I've been getting better, because I have been pushing myself harder than before. It feels great to finally see some results! 

I still need lots of rest! I feel like some days I could sleep all day, and sometimes I do! Haha! But my body is still pretty weak from all it has been through! I think back at what my body has endured, and it's just crazy to think that I survived that! Amazing! 

It is so hard for me to talk about cancer now. It used to be easy for me to share my thoughts about it. But i guess now i suffer from a litlle PTSD. I get anxiety when I have to go back to the hospital where I had many traumatic things happen. And when I'm asked questions about my experience or start talking about cancer in other people, I get sick to my stomach and that "metallic", nasty taste overwhelms my mouth. I hope this will one day subdue. 

I thank my creator every day that he gave me the strength and endurance and the will to keep going! I know deep inside if it weren't for him I would be a lot worse, or possibly dead. I definitely wouldn't have been as happy as I am now! I thank my lucky stars for all my family and my fiancé who has been there for me through thick and thin! My fiancé and I have only been together 7 years, but we've gone through more trials than a normal couple will in their lifetime! I'm glad we got it out of the way now rather than later anyway! 

I do have some rather annoying side effects, other than the restricted breathing and fatigue, I now get headaches all the time! Everyday I wake up with a slight headache and sometimes they turn into horrible migraines! I lose my vision, puke, and sometimes my left arm goes numb. It's a horrible experience. I also have become intolerant of avocado. It triggers a migraine right away. I have always loved avocado, so this was awful to find out I can't eat it anymore. 

Other than the headaches and fatigue I feel pretty good! I'm totally off all medications, and now take a lot of different types of vitamins and supplements, which help a lot. I try to exercise as much as I can, and I'm even attempting a 5k in May! I also will be going rock climbing in Colorado soon too! Life is great! 

My hair is growing back with these intense curls! Totally opposite of what I used to have! It's out of control!

This June will be my 1year Re-birthday! That's one year since transplant! The time is flying by! I will also get a scan around that time and I know I still will be cancer FREE! 

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!

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

Re-Birthday

My sister and I celebrating