God has a plan...



I apologize for another copy/paste update.

Hi Friends,

I've been trying to figure out how to share my latest news and finally decided just to do it. There is no good way to share the latest. This is not a good bye, but I do want to let you know since it looks like God is thinking my time is coming sooner than we had prayed. 

On Tuesday, it was confirmed that the cancer in my brain is in my cerebrospinal fluid (CSF). It is also in the CSF of my lumbar & thoracic spine. This is not good. For you medical types, it is called leptomeningeal disease, a very rare complication of cancer. Without treatment, prognosis was 4-6 weeks. I am doing the radiation, which hopefully puts me looking at 2-4 months. I serve a wonderful and powerful God. I have asked my doctors to not give up on me and they have all agreed to do everything they can to help me. I understand this would be a miracle to survive, but i ask that you continue to pray for that miracle. I've heard the possibility of a year if they can find an effective chemo agent (this is a long shot) and I'm praying for that, as long as it is a year of mostly good, comfortable days. Dana-Farber is setting me up with a neuro oncologist for when radiation is complete. Please pray that this is my solution. I do believe in miracles and pray that this is mine. 
 

So at this point, my brain is still the focus. I don't have symptoms that are bothering my spine, so they are not currently treating it. That could change if I become symptomatic, but I've been told spinal radiation is rough and not something I want to go through at the same time as whole brain radiation. My spine has always been my Achilles heel - scoliosis, pain, it prevented me from seeing Owen's birth, it was where the cancer originally spread; it only makes sense this is where the cancer will be unattackable. The steroids I am on are keeping headaches & vision problems away, but they come with their own side effects. I have a hard time sleeping. I am irritable because I'm so tired, not to mention the fact that my heart is broken. Other than that, I am experiencing some weakness, but am hopeful that is due to the radiation. I am still reading to Owen and able to write, which is so important to me. All things considered, I am doing ok most of the time.

This is not the news I expected to be sharing. But, in keeping with my positive nature, I am choosing to look at this past year as my "bonus" year. I did things many never thought I would do again. I was able to spend extra time with Owen, putting family first. I spent extra time with Jason, Laura, my mom & dad. It doesn't feel like enough time, but it was time I never would have had otherwise. I was able to go back to work and do the job I have always loved to do. I became a Christian, diving deep into what lessons God has been teaching me throughout this process. I hope you have learned something from my journey, too. I am so incredibly grateful that i had the opportunity to live this past year and I hope that I showed you a thing or two about courage and living in the moment. Not everyone gets a bonus year.

With whatever time I have left, I hope that it can be filled with love & light. I ask for prayers of healing, because i know that miracles can happen. But I also ask for prayers of comfort and relief. I don't want to suffer and know that my doctors will medicate me appropriately so that I do not. However, I am incredibly worried about my family watching this process. When I cross over, I know that my pain and sadness will be gone forever (Rev. 21:4). My family will still be on the beginning of the sadness journey, though. Please be with them as the life that they have come to know changes. Help them to remember me and honor me, but help them to continue moving forward. So many of you have reached out to me with offers of love and support. Thank you. I have tried to relay those messages to Jason, but please make sure he knows as well. It takes a village to raise a child and I will rest easy knowing how large Owen's village is.

Now comes the hard... you may want to visit me, but I need to tell you I am not ready for the good bye talks. I would love to reminisce, but I'm not fully ready to say the good byes because I'm still so hopeful this is not the end. I know this may mean that I run out of time. I hope that over my life, I have shown you how much you mean to me and a formal good bye is not needed. Please know that I feel incredibly loved by all of you and you do not need to feel obligated to say anything. Grief is a unique process for everyone and I respect that 100%. Through your actions, you have shown me what is in your heart. ❤

Through all of this, I will continue to praise the Lord. He has a plan and is by my side through it all. Though we will never understand the why, I am thankful for every moment he has provided me. 

I am still hoping to give you many more positive updates, but if this is the last, please know how much your love and support has meant to me. I would not have made it this long without your love & encouragement. I pray everyone of you feels this loved. ❤ And, in keeping with positivity, hold on to this post so that in 10 years, we are laughing about the time I told you all I was dying. 😂


Comments

Post a Comment

Popular posts from this blog

Life is tough but so am I...

Image
My hair started to fall out in large clumps after my second chemo treatment.  I had so much hair and it was so thick.   It was so painful to watch it all happen.  I cried with every clump that fell and it just was not healthy to do so anymore.  After crying a lot Saturday evening and into the morning on Sunday, I asked Jason to call his mom to bring her clippers over and shave it off. She cried with me, prayed with me, and shaved it all off without saying a word.  Surprisingly, once the decision had been made, there were very few tears.  Yes, I miss it.  But I'm determined that I'll get better and have long, thick hair once again.  So the next time you see me, I'll be wearing a beanie or head scarf. As hard as that was... I have been reminded several times this week of something really important.  I look healthy again.  I've had several people comment that they wouldn't know I was sick just by looking at me (except for that pesky beanie I wear...). This means that
Read more

Round 2

Image
May 28... Round 2, here I come!  I was feeling much better going into this round and was hopeful that was a sign that the chemo did its job for Round 1.  I was pleasantly surprised during vitals to find that I had not lost any more weight (yay for stability!) and my pulse was down from over 100 beats per minute to 84!  I was getting tired of everyone asking if I was okay since my pulse was so high... No, I wasn't okay.  Why would they ask that?! My appointment with Dr. Sinclair before chemo was very encouraging and brought me a lot of hope. She was very impressed with my reaction to the first dose of chemo.  With inflammatory breast cancer, you develop a rash, swelling, and hardness in the breast.  The rash is receding, the swelling has gone down, and the breast is not as hard as it was two weeks ago.  I also have a lot less bone pain and I feel like my lymph nodes are not as swollen.  The fevers have also disappeared.  I have had so many symptoms go away or lessen.  It kind of m
Read more

Round #6... Sunny Skies Ahead!

Image
I had my final round of red sunshine today. 🌞  My oncologist was on vacation so I saw a different oncologist.  He was very amazed by how well I am doing and said I could be a poster child for the toughest chemo treatment there is.  I'm feeling very blessed that I have responded to and tolerated this treatment so well.  I also met with palliative care.  Apparently I was referred back in May when I was in a lot of pain and the referral got lost in the system.  They insisted I meet with them, but the doctor quickly realized there was no need to meet because I am not in any pain and I am experiencing very few side effects.  My 60 minute appointment turned into a 15 minute visit. Forever thankful for my beautiful sister. In the next few weeks I will have a PET scan and MRI to look at how much progress has been made. I'm excited for these results.  We are still waiting to hear what the next treatment will be.  The tumor tissue is still being analyzed.  Hopefully we will
Read more