Being the Grace... Being the Blessing...

Today my fervent prayer continues to be…"let me see the Grace and blessing in this situation…"  The response resounding in my head (and also a quote from Rocky Horror Picture Show) … is, “Don’t just dream it… BE IT!”  I thought it was tricky business just to SEE the grace and blessing… but BEING the grace and blessing… that’s where the going really gets tough.

We are venturing into unknown territory; the territory of Radiation and Chemotherapy; radiation 5 days a week; chemo 1 day a week.  Adding to this is Kevin’s seroma that continues to fill up where his drain used to be, and has filled up so much that radiation is post-phoned until it can be drained; coincidentally by the FIRST ENT that started us on this magical mystery tour of cancer.  His radiology staff was able to bump up his appointment with the ENT up to a day earlier; suggesting that he get on the ENT appointment schedule for weekly visits until the seroma goes away.  (Note:  I will definitely be asking serious questions about THIS little post-surgery gift when we go back up to U of M on the 24^th…)

So…. besides Kevin’s physical discomfort, and the disconcertion of so much unknown; what will radiation therapy be like for him, and what side effects will he experience, he has to put off the radiation for two days. 

Sunday, I spent the day cooking foods high in protein and calories that were also somewhat bland, yet nutritionally sound.  We’ve been warned; once the radiation kicks in, as well as the chemo, he won’t feel like eating, and yet has to consume about 3 times the normal amount of calories.  Like our beloved Camilla kitty (and apparently, all cats)… when he doesn’t feel like eating… he simply doesn’t.  Having had MUCH experience trying to convince Camilla that she has to eat, tempting her with every single sort of tasty treat I can think of, I do not relish going through this with Kevin.  (For example, I frequently pry open Camilla’s jaws and force tidbits into her mouth to get her taste buds up and running…I tremble at the thought of trying that on Kevin!!)

This morning, between running and bathing, I packed a “to go” bag for Kevin to take with him to chemo (6 hours.)  I packed 3 different kinds of cheese, sliced, with a variety of crackers, some turkey sticks, some cheddar cauliflower muffins, some high-protein, homemade oatmeal bars (made with applesauce, mashed bananas, almond milk, a mixture of sprouted pepitas, sunflower seeds, raisins, dried cranberries, and carob chips,) some chocolate tofu pudding, a small plate and flatware, and a napkin.  I reflected upon all of the things my sister used to do daily for her husband when he was stricken with ALS (9 years total) – with a MUCH different understanding today than I had then.  These tasks now seem like such a BLESSING for me to have the opportunity to do, now that it is MY precious husband who cannot do them (would not do them) for himself.

Some days, he breaks my heart when he expresses his view that I have “given up” so much to take care of him; or taken on so many “burdens” to take care of him… neither of those things are true.  I do not honestly believe I have “given up” anything.  I frequently make choices to stay home versus time with friends – because that is what my sense of self-care is directing me to do.  And, there are times I DO go to be with friends, for the same reason.  I am NOT a martyr (as anyone who knows me well knows!  I haven’t been called a “princess” most of my life for nothing!!) – but providing my husband with the elements of comfort I CAN – is definitely a gift I give to myself.  Seeing Kevin in discomfort is absolutely the hardest part of this journey.  Except when it’s the second hardest part.  (Conversely, while he breaks my heart giving me TOO much credit; there are moments, albeit very few, when I get NO credit, which also breaks my heart!)  (Obviously I have a contrary nature, I just can’t be pleased!!!)

I know in my head, that he and I have a very different approach to life.  I am a physical person; I LIVE in my body; I have great CONFIDENCE in my body and all of its amazing abilities.  I don’t get sick very much at all, and even when the random and odd physical ailments have led to surgeries, I have had every confidence that I would be up and running sooner rather than later. 

Kevin is a HEAD person; he can do quantum theories in his head; he loves to spend hours with his computer, loves solving issues and problems that require extreme mental concentration.  When his body is out of whack, he has no context to understanding how quickly one can and will heal.  So having a disease that is currently informing MOST of his life… is very far out of his comfort zone.  It is taking him away from doing the things he loves best; one of which is “taking care of” me/us.

If life were art... I would be painting abstract pictures of vivid colors and shapes and swirls and splotches; Kevin would be doing finely drawn pen and ink.

In the interest of full disclosure, I think there is a part of me (and possibly not a small part) that subconsciously hasn’t fully accepted that piece of his disease...that his focus and energy has to be on healing, and as an introvert, as my introverted friends have pointed out, that often means he needs to go deep within.  Scientific evidence says men’s corpus callosum is smaller than women’s, consequently, men can’t think and feel at the same time (distilling the difference to a simple form)… so…he is spending a great deal of time deeply inward and thinking it all through, which makes him appear less emotional accessible.

In MY head, I am super-woman; I can do it all – I can do all of the extra physical chores needing to be done (I can) and still carry the bulk of the emotional part of the relationship… until I can’t.  And that’s when my life feels off-kilter, and I start feeling like my world is out of control.  And I “MIGHT” be taking it out on him; and I MIGHT be trying to completely deny his need for going deep inside, to FOCUS ON ME… which may be what the message I opened with means.  Being the grace and being the blessing in this situation may simply mean allowing Kevin to go where he needs to go right now, deep inside where he can process what is happening to him in his own way and his own time; letting him be safe in doing that while I rely on my OWN resources; inner and outer.

Don’t just dream it… be it!