Thursday, July 31, 2014

Onward,

So, my cancer is stable. While that is great news, it's not great what has happenned to my kidneys and bone marrow. For awhile my oncologist thought I may have a secondary cancer. He did biopsy my bone marrow. That came back negative. That was good but what wasn't was my blood counts are so low I'm fighting fatigue. During this period which was started in may of 2013-until now, I'm struggling with my blood counts. I have very dark urine, that is full of foam. I had to go in for the kidney biopsy so I was transfused then. I did not notice a difference. I also came down with pneumonia in March, got a transfusion then, and it did feel better after. My getting sick was a good thing. That stay in the hospital, really jumped me into feeling better. I think, my port was infected and I had mass infections elsewhere. I was very sick. The doctor told me later, I was sicker then she realized and sicker then we understood, her words, she was scared for me. The care I received there was amazing. I felt and could sense they were on it. They communicated with my oncologist. I never thought I was in danger but I knew I was very ill. It's funny how fast you get sick with cancer. I had been to the oncologist that day, got good news, my blood count finally jumped from the 7's to the 8's, we were skipping home. I get home, 2 hours later I'm struggling to breathe, shortly after I'm admitted with pneumonia. My port never looked good, but it looked awful. I believe the antibiotics they gave me,knocked everything out. My body was feeling much better. I went home and worked on getting stronger. Every illness you get with cancer just takes you to your knees. Coming back is tough. I felt very very good though.  This summer I'm stronger then last summer. However my blood counts continue to be in the low 8's. My kidneys I was told were done improving. After a year, they expect no more recovery. I'm somewhat depressed about that as it's very very difficult living with such bad anemia. I'm rarely rested. I rarely feel energetic. I've Been  struggling with pain in my kidney area this summer.  Twice I've gone to the er. Nothing shows up. I'm thinking it's muscular-skeletal. It's very painful at times, to the point I cannot walk. I'm using scooters more now when I go to stores. One of trips to the er, I learned my kidney count jumped. Despite being in pain I got excited. That's huge. After a year and coming to terms that I will not improve, I learn I have.  My most recent appt. my counts showed even more improvement. I believe if I remain where I'm at, I will be out of the danger zone as far as my kidney function. I'm hoping that if my kidneys showed improvement, perhaps my bone marrow will also. I cannot stress to you, how hard it is living with this anemic condition. I have now forced myself to do things, I force myself to get up, get dressed, get out in the community, go to lunch, take a ride, because dammit if I'm not going  to get better, and this is my best, I cannot die in a bed or on a couch.   That is where I'm at today. I'm fighting to live my life. I don't talk about it much on fb or even in person, as there is no point.  Yes I'm stable with the cancer, but I'm suffering the continuation of effects from avastin. I've also recently had port surgery to remove it. I'm not on iv treatment, it's never healed, I was tired of open holes, so it's gone.  I know, I will have another one day, for I will never be out of treatment. I'm just enjoying the break. I continue to get these ugly huge sores,just not very often. They heal, but they leave huge scars. I no longer anquished over those,  I'm becoming adjusted to a body full of battle wounds. What I'm not adjusting to is,,,,,, cancer. I cry at the drop of a hat, if I meet someone, if the word comes up, I cry. I never tell my story. I listen to theirs. I have come across many that tell me their story, I just don't share to, that I have it. I don't know why. Maybe it's easier to write about it, then do it physically.  It's a word that paralyzes you. It halts you, stops you. I visited my therapist this week and told her I now know I will die never coming to grips with this. I simply cannot. I have seen so much death, I no longer can cry. I've cut myself off of every cancer online group but one. The death, suffering and even the bullshit got to me. I've learned if you were an ass before cancer, most likely you'll remain. I've learned a good majority who quote scripture and flaunt their faith, are the most messed up of all. Women tend to get into cliches, they seem to be drawn to certain things. Most cannot just love and accept and embrace all. My fault is I'm to honest, I'm not into bullshit, I'm not into cliches, I'm not into fake ness. I'm to dam real.  Being terminally ill, I have learned even more how precious it is to be more like Jesus. Every day I ask him to help me be better. If I say I love you, I do, I really do. It's not just an empty phrase. If I say I'm praying, I am, and I'm thinking of that person all the time. I ache over the suffering I see. I despise what cancer takes from us. I despise the losses. But,,,, I'm still here. In order to function well, I have to avoid all the suffering. I had to walk away from the game players. I cannot support women that cannot support me. No ones journey is more important than any other, we all should lift each other. That does not happen. I'm in a good place right now. I have several ladies that are real, they lift me up, as I do them. We support each other not just with cancer but with everyday struggles. Despite living with a deadly disease, life goes on. So, yes, it's good to be able to share other things in our lives. We are more then cancer. We are mothers, grandmothers, workers, friends, wives, singles, we are women trying to live while dying. I'm current with my cancer journey but I have more to share. I will blog next on some big things I've done thruout my journey that I believe only god understands how huge these were for me. I want to share my two trips. I still have bucket list items I'd like to do so I'm in the process of praying for financial means to allow that. One, I'd like to go somewhere with just baldy. Just us two. No schedule, no destination, just go. We never have and we need it. Financially it's a burden so god will have to help. I will begin selling my breast cancer candles soon to help with this. We did great 2 summers ago, so hopefully that goes well again. I also use a portion of my breast cancer candle sales to help other stage 4 ladies or causes. I'm ending this, I'm stable, my kidneys showed improvement, my bone marrow has not, I'm severely anemic, and I'm working on doing something with just my husband alone. I will blog next about my experiences with little pink house of hope, my spa retreat, and a huge decision I recently made. This decision showed me, I'm focusing more on living, less on dying. While some don't get it, I don't care. I get it, god gets it, some with stage 4 totally got it. I have to stress, I don't share much on fb, that is why I began blogging again. I may print this out to leave for my children. I want them to hopefully see a woman, who wanted to live with hope, who still had dreams, who despised cancer yet embraced every breath of life. I want them to see cancer may claim my body one day, but it will not claim my soul, my spirit my zest for living. I know, god will restore my body, my ugly sores will be gone, my scars will be gone, I will not have scans anymore, I will not have all these doctor appts, I will be cancer free, I will be in heaven, I will be ok!  I want rejoicing at my leaving, I want grate fullness for every gift god gave me. I was able to raise my children, I was able to see many grandchildren, I was able to see some things of our world. Never can I complain.  I look forward to sharing the wonderful experiences I've had. I hope anyone reading this is enjoying my journey.

1 Thanks for your comments!:

Ginger said...

I'm so glad you are documenting your feelings. I hope you are printing each post out, so you can put it in a notebook for your children and grandchildren to read one day. I write in a journal a little bit, but it doesn't come out good. I don't go into enough detail I guess.