I am encouraging all those following my journey to go to my blog and in the left hand corner enter your email address in the FOLLOW BY EMAIL box. By entering your email address, you will receive new blog postings automatically delivered to your email within 12 hours of a new posting. Due to the progression of this disease, my health condition may rapidly change and I want to insure all those praying, sending positive energy, and healing thoughts receive information as it is released.
I continue to have access to the medical care offered through hospice; this has been a gift. I rather fancy the idea of my medical team coming to me rather than needing to travel to clinics, it too adds an extra layer of care and compassionate delivery of medical care. Trying to get ahead of my pain has been quite tricky. I realize that my pain tolerance is rather high. I would say that my pre-hospice pain level was best measured at a 20 on a 1-10 scale. It wasn’t until hospice placed fentanyl patches on my body, that I fully realized the true extent of pain I have been enduring spanning 12 months’ time. My condition creates a moving target of sorts especially concerning proper pain control. For the moment I have settled into a semi-regular pain management schedule that is doing a good enough job. I am taking 150mcg of fentanyl – by way of patch that last 72 hours before needing to be changed. Break through pain is being controlled with morphine – typically 60mg every 5 hours. We have added 1000mg of Gabapentin taken daily. These three medications, in concert with each other, are able to positively reach different pain receptors and have brought my pain level into the 1-10 traditional tracking scale– I now rest with a pain level typically between 3-6. I am sharing at length regarding pain control for a couple reasons, first I was unaware of the heightened level of pain I was living with – unnecessarily and secondly, that with proper pain control, it makes life easier for not only my body but my mind.
Reducing pain has allowed me to have additional energy to spend time with my family and organize things to make the life transition easier for my family. While this journey sometimes brings tears, it too provides moments of levity that are priceless. Oh how I wish I would have been writing a couple sentences daily about my adventures as they are quite funny at times – the evenings are an adventure for my family to witness. I tend to start nodding off and I start having conversations with individuals that are not in the room with me. During these conversations, I recognize at a certain point that I am doing this and then begin to laugh. I often unknowingly insert myself into the TV program that is playing in the background. Due to the high levels of medication I am on, I am choosing not to drive, for certain I would be pulled over and cited straight away with a DUI! Recently, Cole and I traveled to the church in Salem, Oregon where my Celebration of Life will take place, we were checking out the venue and doing a run through of the amazing video/movie memoir he has put together; it looks amazing. On the drive home I began to nod out and Cole insisted that I take a video of myself, which of course I did – it was hilarious.
While there are funny moments, there too are difficult moments. Earlier in the week I was experiencing a tremendous amount of pain, which we now refer to as the “J situation”. I awoke around midnight to the most incredible pain that was exasperated when I would take in a breath. The pain trail mirrored that of the letter J, hence the event naming. I was bracing myself with one hand on the headboard of the bed, the other hand was poking around the J area trying to figure out what was happening. Curtis and I both confused and a bit stunned not knowing what was happening – I felt it had little to do with the open wound but rather something muscular or nerve related. Nevertheless, I kept saying aloud that I did not know what was happening and I needed help to figure it out. Curtis and I began working backwards removing KT tape, then removing the bandaging from the wound, we pressed around the J area searching for tender spots, and we too wanted to get a visual of what the heck was happening. We were unable to identify anything out of place or out of the ordinary. We then had to put me back together; Curtis applied some essential oils along the J and then reapplied the wound dressing. I was still in a tremendous amount of pain, so much so that the right side of my body seemed to be collapsing unable to stand. We then shifted to reviewing my medication for the day while identifying which medication I would take now to address the uncontrolled pain. After taking the decided on PRN medication, Curtis lovingly tucked me back into bed, placed an icepack on J, and I was able to fall asleep around 1:00am. After sleeping for a few hours I awoke about 5:00am to the same pain, in fact it was worse! – I did not wake Curtis, I immediately called the hospice line for assistance. I was pleased that the voice on the other end was an RN that had taken care of me before – she knew if I was calling I must really be having a situation and she was correct. I shared all the details of J; we discussed what I could do now to address the pain and came up with a plan – I followed through with her plan. She later contacted me after speaking with the MD and placed an order for some additional medication. Although we were not sure what was causing the J pain, my RN was committed to getting me out of pain, which we were able to slightly accomplish.
Later that morning, my acupuncturist Mandi came over – she has been making house calls whenever I need her – she is such a gift! When she arrived to the house I explained the traumatic J events from the early morning hours and she immediately said something about my 7th rib, in part, being the cause of this discomfort. Next thing I know, Mandi leapt onto my bed and manually did a couple maneuver’s on my stomach along J and just like that, I could breathe again without the harsh pain; and I felt even better. Mandi taught Curtis the special technique so he can now get me back into place too. The school of thought is that the mass is externally becoming smaller due to the rupture allowing fluid to drain. The mass, prior to ulceration had created such a change in the biomechanics of my shoulder area, with my shoulder rolling forward, that everything is a bit out of place including the muscles surrounding the area. Most easily put, things are trying to return to where they belong and there are some hang-ups along the way. Between Mandi’s magic and immediate pain medication adjustments, I was finally feeling pretty good. As I am typing right now, I am starting to experience pain along the J area – so I will stop for now and pick-up later.
I have been spending my good days working on pulling the pieces of my Celebration of Life together. My hope is that my husband and children will be surrounded by all those that love me – that they will feel an overwhelming sense of peace, love, joy, and happiness, despite my passing. I too am making the celebration into something special – I want everyone to know how important you are to me and to walk away from my service feeling inspired. I am making gift bags to hand out along with the Celebration of life program; in each bag there are personalized special things that I hope will inspire you and will create unique lasting forever memories. It may sound a bit silly I suppose, but I am excited to share this last memory of me that I believe captures the essence of who I am and the legacy I am leaving behind. I love that I am able to design the program for the Celebration of Life. I love that those who will be speaking or who have contributed, have asked me for an outline, guideline or framework for their particular part, and I am able to say – you write or say what is on your heart – there is no right or wrong it will be just perfect. I love that I continue to have moments where I am able to see myself through the eyes of others, it deeply impacts my spirit and humbles me.
My life right now is complicated and yet it is not. I am able to rest, text sometimes with others, occasionally have a visitor, and just be. It feels good. Curtis and I are blessed that our son Cole (20) has chosen to put his personal plans on hold for the next year and has moved back home to be an emotional support to the family, especially to our youngest son Jackson (17). It will be Jackson’s senior year of high school. This is a proud mama moment to know that my children are choosing family first, without hesitation and are transforming a difficult situation into something that is beautiful.
Many have asked how they can help our family. One of the easiest most helpful ways is to send gift cards to stores such as: Safeway, McDonalds, Subway, or Panda Express and mail to either my home address or to PO Box 192 Philomath, Oregon 97370. The gift cards make it easy for the kids to go grab a quick bite or pick-up groceries for the family. Thank you to everyone that continues to pray, send healing thoughts, and positive energy our direction. Although I am unable to respond to every email, text, phone message, FB message etc. please know that I am reading and listening to each one and appreciate the continued support.
I am not sure how much time I have left, yes my pain is better controlled which has increased my quality of life but we too must remember the other side. I have an external ulcerated mass that the RNs say will not heal it will continue to get worse – and avoiding infection is key. The systemic cancer disease process is rapid and aggressive. I mention this because when looking at me, on most days, I look as though everything is good. It can be a bit deceiving for us all. Curtis and I get a reality check when dressing the wound or when reviewing the medication log and the amount of pain medication I am taking.
Thank you for joining me on this journey, for all your encouragement, support, prayers, and love. Please know that I have made every effort to make arrangements for notifications of health updates, my passing, and details regarding my Celebration of Life to be posted and announced via multiple social media outlets. The best way to insure you have up to date information is too sign-up on my blog to receive new blog posts delivered to your email account. So when my journey here is over, I want there to be a true celebration of my life. I want you all come to my Celebration of Life, surround my family with your love and support – I hope my family will feel the extension of your love that I have experienced over the past five years.
Just know, I am still holding out for a healing miracle – I am open to receiving.
Today, I am hopeful~