By the grace of God, we survived those first days, and, somehow, things have now become familiar here at the hospital and days can even be almost comfortable. Devos has become our second home. We know our nurses' names, we depend on them, and think of them as part of our family. They represent security and feelings of safety for us. Likewise, names on the doors of the 9th floor rooms belong to faces of patients we know and who are traveling a similar journey that MacKale is traveling. We hold them in our prayers each night and root for good levels and clear scans. The doctors . . . well, you know we adore Dr. Mitchell, but really, all the docs are familiar and marvelous each in their own way. Of course, the doctors joke and tease MacKale, which he loves, but, let's face it, he is often the master jokester himself. He's clearly very comfortable with them.
The security folks recognize our name when we check in for our badges. Child Life volunteers know that Mac is a card shark, and we have met all the therapy dogs and have learned to request our favorite one when they visit.
We have our favorite patient rooms, we know which ones have the hottest showers, which are the biggest and which ones have the most comfortable pull out beds for parents! (Yea, that would be NONE!)
I personally have developed a keen sense of knowing what time there isn't a line at Starbucks, I greet my baristas by name and they know my order without my telling them " . . . venti vanilla chai latte for Marsha (that's with a 'sh' not a 'cia')--extra hot!" It's not my hometown Java, but it works in a pinch!
We know where they hide the big Styrofoam cups in the nutrition room, how many laps around the 9th floor it takes to travel a mile, how to ask for the best chap stick and we know when the best time it is to try and do a load of laundry.
We've also developed a keen understanding of medications and 'levels' . . . white blood count, hemoglobin, platelets, magnesium, phosphates potassium and ANC.
We know which meds work best for which chemo in deterring nausea for MacKale, and we have a highly sophisticated routine for working Methotrexate out of his body that involves massive amounts of liquids, walking (or crutching) and music.
Even when those walks last late into the evening when everyone else is sleeping.
These are all highly valuable bits of information, I assure you. And while all this familiarity and intimate knowledge of the workings at Devos has made things infinitely easier at times . . . I could, quite honestly, do without it. It's really information I could have gone my entire life without mastering, and I would be ok with that.
I would much rather go back to the way things were when I lived in my little 'cancer ignorant' bubble. When juggling, work, home, boys and boys activities were our greatest challenges. When Mac was healthy and mobile and whole.
But this is our life now and this our journey and we continue to put one good foot in front of the other . . .
. . . but I will tell you, though, as 'familiar' as we have become with cancer . . . there are days . . . many days when we are simply weary!
There are days that we are still flying 'blind' and when I wonder if 'all this' will be too much for me, for Mike, for MaGill and McCoy and most importantly . . . will it be too much for MacKale? Will all 'this' effect him in such a way that it makes him, not 'him' or us not 'us' anymore. . .
Today, is a day when we are weary! Our last two rounds of methotrexate, our easy chemo, have left us weary. We are typically rock stars at this chemo. We know what we need to do. Mac sleeps as soon as he gets his chemo, then he walks and drinks for two days straight and then we knock out our levels and go home in record time. But these last two treatments, despite our regular routine, have taken longer . . . it's been more work . . . more time away from home and we are weary.
On top of that, at some point in the middle of the night last night, MacKale's body decided to spike a fever . . . then it didn't . . . and then it did . . . again. When you're in the middle of 'the fight,' there is absolutely nothing worse than being blind-sided. Fevers are frustrating enough. They mean disrupted sleep and extended stays and extra pokes. We were both exhausted and frustrated and emotional last night and yet, when they came to do an extra peripheral poke on MacKale in the wee hours of the morning to rule out infections, Mac was compliant and polite and helpful and sat right up and chatted it up with the tech. He was 'Mac.'
"Here use this arm. This vein is a good one, see? Now, you tell me when you're ready, and I'll hold my breath and close my eyes. When you see that, then you go, ok? My Grandma Shirley taught me this when I was really little . . . like when I was 3 I think . . if I just sit on my other hand, close my eyes tight and count to ten, it's over before I can count to 3 or 4." "You ready? Ok!" "You did really good. I hardly felt that at all. Nice!"
He's still in there! Despite exhaustion, frustration and feeling down . . . he is still 'him' . . .
Yes! We are weary and we might not exactly ever be exactly 'us' again and MacKale might never be exactly the 'Mac' he used to be, but perhaps, all "this" is God's plan to make a better . . . a stronger 'us' and make Mac a stronger, more amazing 'MacKale.'
"He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." -Isaiah 40:29-31
As for prayers . . .
Your prayers are precious to us. Please continue to keep us in your prayers. Pray that we will find strength during these days of treatment, that the chemo kills all the cancer in MacKale's body, pray that he will soon be able to be mobile and continue to heal. I can only continue to believe that God will turn all of this into something good. Thank you all for being our rock and strength when we get weary!