Into His Hands

Cancer sucks...Steroids suck...and the combination of the two suck big time!
       For about a month, I was on increasing doses of Dexamethasone. The good thing about this steroid is that it really helped control the tumor pain in my hip bone and general abdominal tumor pain.
The bad things about this steroid are: weight gain-I've literally gained 40 pounds in two months, that's ALOT! ; this steroid causes you to have what's called "moon face", however, it doesn't just attack your face, it also attacks your neck, the back of your neck and your abdomen. Your face swells to roughly the size of a basketball - then your neck and abdomen follow suit, finally, a large swollen hump forms on the back of your neck. So for the past couple of months, I've looked like a chubby,  pregnant Hunchback of Notre Dame. Nice. I could handle all of that until one day my neck and face were so swollen that I couldn't turn my head. My hands and feet swelled so badly it caused my neuropathy pain to increase and my face was so swollen it felt as though it would crack and split at any moment. I'd had enough (or so I thought). I spoke with my Doctor and began weaning off the steroids. Within a few weeks I was finally off of them. The swelling was really beginning to decrease and I thought I was feeling better. That quickly changed.
       The tumor bone pain became so bad that I walked with a noticeable limp, my energy level quickly dropped as did my oxygen levels. I developed a wicked rash over my face, neck and torso. My hospice nurse spoke with my Doctor. My doctor felt the cause was going off the steroids. Cancer cells produce a protein called cytokines. These nasty little buggers cause everything from nerve and joint pain to apparently rashes. This was being suppressed by the steroids and allowed to go crazy once I stopped them. 
       Yesterday, we met with my Doctor. She examined the rash and still felt it was due to the cytokines being let loose. So.....it's back to the steroids. We are going to do the lowest dose possible to control symptoms while managing the side effects.
       Jay and I have always said that my Doctor has a very keen insight into what is going on health, spiritually and emotionally with me.
 During my check up two weeks ago, she suddenly stopped, placed her hand on my shoulder, and said, "I just feel that I need to share something with you." She took a seat and showed us a chart. The chart is specific to advanced stage cancer patients under palliative/hospice care. The chart reviews the percentage of the patients activity level, evidence of disease, self care, appetite, level of consciousness, etc. Once that is assessed, an Estimated Median Survival in Days is given. She shared the chart information with us and shared the # of days (months) she feels I have remaining. Although it was difficult to see in black and white, it was information I had been praying about - I really wanted to know. It was as if the Holy Spirit told her soul what my soul needed to hear.  She also gave us a great explanation on how the trajectory of advanced cancer happens. She said that cancer patients have a lengthy time of level/baseline. They do treatments, they have good times of feeling healthy. Then very rapidly/suddenly, they experience a decline. No one can predict when it will happen. She asked me if I had everything ready. I told her that I told her there were several thing I still needed to do, however, I have been preparing mentally, spiritually and getting paperwork, etc prepared.
       During our visit with my Doctor yesterday, she asked again if I was ready. I told her that I was much closer, but still needed/wanted to complete a few things. She looked me right in the eyes and said "the trajectory (decline) is what frightens you the most, isn't it?" I told her it was. I told her that I am always hyper-vigilant and on-guard when new pains and symptoms appear - wondering is this it?
I don't want to be caught off guard. First, she told me "don't be hyper-on-guard. It's a waste of your energy and you do not want to waste one precious ounce." Second, she told me "ask God to give you a warning or make you aware. This is not an unreasonable request of Him." I totally agree! I've asked God to be merciful with me throughout this and I will now also be asking Him to give me a "heads-up'.
       I haven't written this blog earlier because we wanted to be sure we were able to have as many face-to-face talks with our families as possible about the timeline. So far, our families are in two camps: Camp Denial and Camp Reality. I have to say, there are many more people in Camp Denial. I personally bounce back and forth depending on the day & how I'm feeling on any given day. I've read several books that say denial is actually a healthy coping mechanism for most people so let them hang out in Camp Denial as long as they want to.
        My hospice nurse visited today. We had a nice long talk. She said that during their team meeting, they discussed that My Doctor went over the life expectancy timeline with me. She said they all just sat in silence for a while. She said they rarely have someone enter hospice early as we have chosen to do, and they rarely have someone so young in hospice. It's hard for them to grasp the timeline because I look healthy, I can still do some things like laundry, some cooking, etc around the house. She told me that she has joined Camp Denial. I discussed what my Doctor told me about asking God for a heads up; sign; warning...whatever you want to call it. She said that I will know. She said one day I will suddenly feel terrible, tired, and think to myself - yep, I'm dying.
       I do have a few milestones I want to happen before I go to heaven. I want to spend Thanksgiving with my families. My TX family will be here for Thanksgiving week, and we will have to work out early/late Thanksgivings with the rest of our family. 
My precious loves will be be making trips here in late October and early November. Their presence is a balm to my soul and having them all here gives us a wonderful sense of normalcy, if only for a while. Please pray that I will feel well while everyone is here.
I want to see snow - LOTS OF SNOW! I want to have a beautiful last Christmas that is white and lovely. I want to be able to help decorate my house and make cookies - the whole nine yards. I want to go on a Vegas trip with my Mom and Roger that we have planned for December. I want to celebrate New Years. I want to celebrate Jay's birthday.
       There are so many items on my bucket list that will have to remain unchecked. Most involve travel and things that I am simply unable to do physically.
I trust that heaven will make my bucket list look sadly pathetic.
       Jay asked me one day - with all the books I have read about heaven - do I anticipate being there? Yes, I do. I cannot wait to meet Jesus face-to-face. I cannot wait to praise Him and praise the Father in their ACTUAL PRESENCE!
I am excited about exploring heaven-what will it look like? What amazing things have been prepared for us? I'm delighted at the thought of being reunited with my PawPaw, Jay's Dad (My Turnip), Jay's Grandparents and friends that will be waiting to welcome me. I am thrilled at the idea of actually meeting so many people I admire and have only read about: Paul, John, Peter, Mary and Martha, CS Lewis, Corie Ten Boom, Kara Tippets, Joey Feek - my list could go on forever.So - yes - I do have an anticipation of heaven. I also have a sadness that leaves me heartbroken and undone when I think about who I am leaving behind:
The One Whom My Soul Loves - My Jay.
The First Man I Ever Loved - My Daddy.
My Mom - Sweet, Sassy, The Best Foot and Head Massager Ever.
Charla - Kind Hearted, Always Puts Others Before Herself. Loved by so many!
Roger - Gentle and Kind - a Gift to All Who Know Him.
Lois - My Second Mom From the Beginning - Always There No Matter What.
My Brothers and Sisters In-Love - They are so encouraging and loving. They are a blessing to us!
My Nieces and Nephews - They are all so sweet and lovable in so many different ways. They are sweet, they pray for us, ask about us and are just such a special gift to us.
My Girls - Friends like these ladies come along once in a lifetime. God sends them into your life for a reason- unconditional love.
       These are the ones that my heart longs to stay for, yet I know that I can't. So - I will give them all to God the one who created each of them knows the best way to care for them. Into His hands I will place them for the safest of keeping, just know that I love you all with a love that cannot be measured.

Blessings,
Mandy