It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.

I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.

I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.

Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.

Angels

Part of palliative care is a reiki program. It is part of the volunteer program. Volunteers give clients in palliative care and hospice reiki to calm them and make their passing more peaceful. Though I had met with Lisa over 2 weeks ago I had not yet heard about seeing a volunteer or receiving reiki. I called on Tuesday, before my surgery, inquiring as to what had happened  to the reiki. In preparation for my surgery. Lisa sent someone out. As Laura walked into my room, she said, “Do you know you are surrounded by angels? You have lots and lots of angels surrounding you and protecting you. Before that moment I had not been aware of their presence. My brain had not yet been tuned into knowing that they were there. But in that moment I could see them, feel them, hear them, knew they were there. Now I wonder how it is that I did not always sense them. How could I possibly not see them. There is Poppy, Great grandma, Great grandpa, whom I’ve never met, Aunt Bren, Grandma Hauser, and a little boy and girl. I do not know the little boy and girl, but they are young children with curly blond hair . The little boys hair with a darker brown tint than the girls. The girl with nearly sheer white hair. Poppy is not old, but a young man. He is slightly older than pictures of him getting married with grandma. I would say in his early 30’s, though in heaven there are no ages. They choose a body for me because I’m still a form. Great grandma and great grandpa are also much younger (similarly in early 30’2) both with full heads of colorful hair. And I feel them surrounding me. Protecting me. I feel their wings against my cheek. Like fatherly light touches – butterfly kisses. I feel the softness and comfort and protection. When I close my eyes I see them waiting for me, patiently waiting for me to be ready and finish what I need to. As I drifted off to sleep during surgery they were all in the OR waiting for me, waiting for me to come and play, to fly with them. Oh what glory. I did not have my wings yet. But to fly through the air and feel the glory, the warmth of the sun as I bask in its sunshine. How I cannot wait to close my eyes. To feel them close to me. Close enough to know they are waiting for me, to welcome me into their arms when I am ready. In the meantime, they walk with me, hand in hand, until I’m ready.