Monday, May 20, 2013

Heads Above Water

How are you all? I'm sorry I haven't been updating in so long. Here's what we have been up to...

About two weeks ago Phil started to do very well. He was up and about, making his own snack, did some errands (yes driving!) and even went to the driving range for a bit. Best part was he walked to Safeway and bought me three magazines and a stuffed kitty that looks like Minou :) It melted my heart!

Photo: Phil WALKED to safeway and got some stuff including these as a gift for me. DYING

The next day or so he crashed, and it became evident that he really overdid it. I have heard that this is something cancer survivors must navigate through by trial and error. Unfortunately in his case, overdoing it meant he started to experience some intense heart pain again, which is the fluid around the heart flaring up. The drs have still been unable to pinpoint exactly why Phil's heart does this. My feeling is it's his body fighting something, and his immunity is having a hard time dealing with it.
It has always gone away on it's own so we chose not to go in to the hospital unless it got pretty painful. It never escalated too badly and now Phil is doing better. He really just needs to rest for a long time and it goes away.

This past week I got a bad cold, which felt much more serious by day 2, but when I called the advice nurse she said this weird cold is going around, and indeed it is. Really sore neck, headache, blurry, cough, runny nose, sore probably got it in the past month. I'm still coughing and pretty low on energy, fighting headaches but Tylenol has been helping as well as juicing. I am restraining any direct touch to Phil's skin, but will rub his feet, legs, cuddle his legs over top of the blankets where he lays. An all-too-reminiscent way of giving love to him, like I did in the hospital.

Somehow I am winging housework, cooking and getting groceries, and also supporting Phil emotionally and physically. Every week, every day is different with it's challenges. Emotions go up and way, way down for Phil. He is at the point where he is just crushed and fed up of being bound to the couch. While everyone his age is out and about living their lives, Phil is unable to even sit up for more then 5 minutes and he can barely walk to the bathroom without tripping because he is so weak. Although we don't like to use the word unfair because it is pointless when it comes to disease, sometimes I just tell him that I'm sorry that this happened to him and that it IS unfair that it's been as hard as it has been, and THIS long.

We like to watch the news at night, which gives us perspective and also reassurance of the time we are living in, and thus are strengthened spiritually. I try to read the text for us daily. We are listening in to meetings, but just keeping our heads above water. I have reached out to the elders this week for a visit, we need some spiritual encouragement and comfort. It is important to ask for help when you need it. Mom and dad are flying in Friday which will be amazing for all of our spirits. Dad will leave Monday, Mom will stay 2 weeks. I will enjoy her help! How could I ever thank them enough for how much they give.

Wednesday is Phil's pet scan. This is the test that shows us if there is any cancer left in his body. We are 99% positive it will be clear. We should know Thursday at least what the results are. If not, stem cell stuff will be discussed. But no need to go there yet. Hopefully by next week Phil can remove his picc line. If you aren't sure what that is, a picc line is a thin IV tube that goes into the outer top part of his arm and stays there with a sort of tape. Inside the body, the tube goes all the way up his arm veins into his main artery. On the outside it has 3 IV openings, which are used to hook up to chemo IV, to retrieve blood (sometimes), and another for saline. It is painless to him, but a constant annoyance to have something sticking out of your arm when you are lying down and such. He has a stretchy arm band that breathes but also keeps the 3 IVs tucked away. The picc line also makes it very hard for him to shower as we have to wrap the whole thing up with plastic and tape so no water gets in.

The day his picc line is removed will be a VERY big deal, as it's been in since probably October of last year or so. It will not only FEEL freeing, but will represent that he truly has been cured of cancer and has his body back to start again. However, I don't like to talk about these hopeful of things to him just yet. Until Wednesday, then I will. When I encourage him it is imperative that in my words I don't provide false hope and comfort, but rather encourage with honesty- respecting him as the husband I look up to. I would want that from him. Amazingly, Phil in his own ways has been encouraging me as well. Sometimes it just takes his glance or the certain way he says "I love you" with tears in his eyes.

There are a handful of things we used to do and have together before cancer. But being robbed of normalcy and finding comfort in just words, and a connection through sense of humor- this has been such a blessing. We both see each other at our worst almost every day, and yet we love more and more. There is something so special when you can both look like a wreck, be in a bad mood and be depressed and yet totally accept it and be okay with it. We try so hard to be positive most of the time, so when we are low it is not something we find hard to deal with. I could have never dreamed of feeling that way before I got married. I was so set on always looking beautiful, and forcing myself to be happy and holding back the reality of imperfection as much as I could. I hadn't a clue. How could I? People had joked about passionate love falling into a "comfortable" place after a few years. But the "in sickness and in health" part of the vows never really entered my mind, or anyone else's advice. You don't foresee disease this early on in marriage.

I am so thankful that now I have that advice if someone would ever want it. Society has is all wrong. Passionate, infatuated love is a wonderful phase, but fizzles out into a warm, butterfly-stomached-trust-love that can last for years and years. There will be times where the passion you experienced at first will come back and that makes your love exciting and special. But there is a whole other level of love that blossoms when the "passion" and even comfortableness is erased from the mix. It's a level where you don't have to speak to understand the depth of pain and emotion you feel.

Where you don't go on a date for months and months, but make laying beside each other on a couch special by making a favorite meal and watching a good comedy. Where you get up in the morning and don't recognize who you see looking back at you in the mirror and yet your Love still sees the beauty shining in you. Even better, they accept that you aren't the youthful, light-hearted and vibrant person they dated, but a more real and special version. And they are happy that you have changed, they are so happy to just be with you and hold you and know that no matter what, it will be okay.

Love is weird! And mysterious and all our parts are made up of it. We are all so blessed to have it.

I am going to try and arrange some visits for Phil, though he is having a hard time since he is constantly tearful. He does well with friends around. He is not gaining weight as his appetite is kind of low. Do you have any suggestions for things I can add to his smoothies for added calories, protein etc? I have to get some vanilla whey protein as I have some chocolate. I also have an all natural green mix I add. Also, if you have any ideas for high calorie snacks. I am at a loss. I'm living on these... also do you know of a good healing after cancer type book? I'm overwhelmed with how many there are. I hoping for all natural recipes, advice for exercise, emotional well-being, etc. I'd love suggestions.

Much love to you all and thanks for continuing to read this blog. Your support means the world!!!!