The last two days on my Facebook page, these two photos came up, from one year ago. We both are so happy and unaware. This led to tears yesterday, grieving for what has been lost. There is also happiness that Phil and I have had the wonderful adventures that we have had. So I guess I would say mixed emotions, always mixed emotions. In the first photo we are at the Pigeon Point lighthouse, one of our favorite spots to picnic in the van. I certainly grieve those times, I miss our van time. The next photo is Big Sur, we have loved Big Sur since we first became a couple. It is a very special place to us. Yes there is a hole in my heart, I'm trying to fill in minute by each precious minute with my husband, my love. I cry, I feel and I try to pull myself together before Phil gets up. I feel that being his caregiver part of my job is to pull him up from his grieving. To keep him up and fighting this without worry. It is hard enough for him to deal with what is going on with his body right now. Mentally and physically Phil is going through many feeling, much pain and I'm sure grieving of his own. I watch it, I know it and I own it. So by the time Phil gets up, I've pulled myself back together again.
It is a series of getting up and going back to sleep in the mornings for Phil. Meds start at 6:30, then at 8:00, then at 9:15, then at 10:30. He will drift in and out in the mornings until about 9:30 or 10, on a good morning. There is also an afternoon round and and evening round of meds before bed. I have to keep careful track of his meds, because he does become confused about what he has recently done. The injury done to the brain during surgery, plus the radiation, is noticeable in many ways. Short term memory is involved, there are some problem solving issues and there is weakness on the left side of his body. It is hard for him to move around, sit up in bed (because of loss of muscle tone) and his balance is off. There is also an emotional aspect to all of this and as I was explained to, it is like his brain can only take so much stimulus. To over excite right now causes problems, too much stimulus can lead to seizure. I let him guide me on what he feels like on any given day. I also encourage him to move and try to interact and get back into the world a little at a time. Sometimes he seems so much like himself and a moment later he is "different" having trouble understanding or just having a hard time dealing with it all. He does the same thing I do, he will pick himself up and appreciate that he is still here. At this moment we have been dealing with hair loss. It is falling out in an odd way due to the way radiation was applied. He has to be careful not to use anything that can cause agitation to the scalp, unscented everything, no shaving the head and no sunlight to the noggin.
We are still on a napping routine, this week there are two awake periods 11:00 to 2:00 and 4:30 to 9:30 in the evening. Mondays are both Noelle and Nicole's day off, my daughters have been a life source to me in many ways during this time. We picked Noelle up during the morning awake period, she ran errands with us. Everything that needs to be done is done during those two periods. So Noelle ran with us to the store, pick up prescriptions and have lunch. It's nice to have the company, its good for both Phil and I. I will run into the store or do laundry and she will visit with Phil. He has been going to the store with me to shop, it is hard on him, but I think we both know it is good for him. We get a couple of walks in, we drive and look for beauty and we talk for hours. I know this is what I am suppose to be doing now.
Darin my son in law celebrated his birthday May 22, Nicole texted and asked if we wanted them to drop by with cupcakes when Phil got up from his nap. Phil hates to have people over because our studio apartment is so small. We love our apartment and it is perfect for our needs right now, but it is very small and it feels cramped in when people visit. It is all so odd, how life falls together. Right before Phil had the first seizure in January we had decided to live the weekends traveling in the van and downsize our life into a studio apartment. We moved into this apartment 1 week after his first brain surgery. This apartment has been a blessing in more ways than one. It is perfect for us right now. That being said it is very small, a bedroom/kitchen and a bathroom. We decided on the second wake up session we would meet Darin and Nicole in a place where we usually have picnics together by the ocean. A place with a picnic table and wind blockage, so we could sit and eat our cupcake. When we arrived the picnic table was already taken. We found a bench that was close to our car where we could all sit and eat our treat. With Phil's balance the way it is, we are still walking on firm, stable ground. We are working towards beach walks as soon as we build his strength. Because of my size versus his, we choose to be safe at this point. We all sat down and enjoyed a cupcake and spent a half hour talking to each other. Darin and Nicole were on their way to have a birthday dinner on Cannery Row.
As we drove away I was feeling very good about everything, because this was another accomplishment, this having a cupcake by the sea. I enjoyed the company, Phil did very well and it was something we used to do and I felt like we are moving in the right direction. When I said this to Phil, I realized he was crying. The same tears I had shed earlier, the grief of not being able to have that beer and cookout, camping in Tahoe or going to dinner with Nicole and Darin. To run on the beach, to climb the rocks. I let him cry and told him I understood how he felt, but now we must acknowledge how far he has come. That we will go camping again, each day he is healing and it will get better again. He will run on the beach, he will feel the sand in his toes, soon very soon. We picked ourselves up again, hugged, kissed and went home and had a beautiful dinner together and enjoyed a little TV, a "Naked and Afraid" episode. Smiles.
Fear is something we tackle everyday, it is a part of this "journey with cancer". I still can't believe it......I'm dealing with it, we are living it and I still can't believe it. I have a woman that I am friends with on Facebook, she has been going through a similar circumstance with her husband, this battle against a disease. We chat online to each other and heave watched each others story unfold. She told me on Monday, her husband is not going to make it. My heart breaks for her and it opens that dark fear inside of me. The one I try to push down. I know that Phil is young and strong, I'm trying to make sure he is taken care of. Fed well, meds taken care of, we exercise everyday and love, he is loved so much. Just one day at a time.
We make a deliberate decision everyday to enjoy the day ahead of us. Phil loves the ocean, it seems to help motivate him to want to move. The sea is ever changing and the sound of the ocean is soothing. We look for great vintage cars, flowers and he puts up with me toting a crystal ball around with me. We intend on meeting this challenge head on and with love. Thank you for everything, we need you and we appreciate you, we would not being doing this without you. Thank you from the bottom of both of our hearts, for the love, the hope and keeping us going.
Cards to Phil have slowed down, mail box hasn't been as fun. I have all the cards hanging around the apartment. We check the box almost everyday on our drive, please help make it fun. You remember snail mail, Phil loves it.
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