Style, Swimming, and Surgery

Once again it feels as though it has been too long since I last touched base. A lot has happened since I posted last; good and bad. In case you haven't noticed, my blog has undergone a major revamp. (I will let you decide if that is good or bad!) As for the rest of things, I will start with the good:

After weeks of leaving my port un-accessed (no gripper needle in it); going for gentle massage; and not having IV fluids pumping through it, the pain on the right side of my chest decreased slightly. Since it wasn’t accessed, I was able to partake in Matthew’s birthday festivities, at The West Edmonton Mall Waterpark! For those of you who don’t know, my husband and son go swimming together at the local pool, often  more than once a week. I had only recently been given the go-ahead to join them (my immune system and body were just too weak before). It was a family activity we could finally all do together— and I was so excited! It was so much fun, and I not only got to play with my godsons and nieces in the kiddie pool, but I even got to go on a few slides! The worst part was the number of stairs I had to climb to get to each one (and boy did I ever feel it the next day!) but words can’t express how grateful I was that I got to go. It wasn’t as carefree an experience as I imagined, with all of the pain I was in, but none of that mattered when I got to see my son put his head underwater for the first time as he "swam"! 

It came time to try to access my port again, and not only was it super painful having the needle go through (it usually isn’t very bad), having fluid flushed into it hurt as well (usually don’t even feel it). We came home to attempt using it at a lower infusion rate (pumping slower than usual), but quickly noticed the pain was back, much to our disappointment.

All of this time I have been praying, worrying, and asking for the intercession of others so that I might avoid surgery and the additional pending scar I was sure would come with it. There are lots of positive ways to look at scars, and granted, they could definitely be bigger than this, but none of that mattered to me at the time. In what sounds like good news, my prayers to keep the scarring to one side of my chest were answered.  I say, “sounds like,” because to me, it is not.

You see, my prayers not to need a new port were answered; however, a surgery is still required. Apparently, a port is not the best device for my medical needs. The amount of times I get it accessed (read: poked); combined with the fact that I have it pretty much permanently accessed (but for a few hours on the day of a dressing change); not to mention the quantity and frequency of fluids I am pumping through it; is all way more than what the device was created to handle. Did they not know how often I would need it accessed before putting not one, but TWO in?! Don’t worry, I asked. As for an answer, it wasn’t a clear one. Basically, the ideal use for a port would be, for example, chemo. It would get accessed approximately once a month, used once a day for about a week, and then removed for the remaining 3 until the next round starts again*; and it isn’t needed for months and months on end. (*Note: please forgive any ignorance of the ins-and-outs of chemotherapy on my part, and any false impressions I may have given about it.)

If a PICC line was an option again (on their side of things, not mine—I detest the things!), it was not mentioned.  I was worried that it would be brought up again, and was ready with my laundry list of why I dislike them so strongly. Little did I know that list would come in handy anyway. You see, they don’t want me to get a PICC line again: they want me to get a Hickman catheter. I thought the emotion I previously held for PICC lines was hate. The Hickman has had me redefining my feelings. A PICC line? A PICC line I despise. A Hickman? A Hickman I HATE.

The Anatomy of a Hickman Catheter 

What is a Hickman? A Hickman is similar to a PICC line, in that it is a free-flowing tube from the inside of a vein, to the outside of one’s body. Only this time, instead of my bicep, it will be in my chest. Vanity? Ha! Vanity... I thought parallel scars would be bad, but this?! The thought of this— of me looking like this—it makes me want to throw up. For some of the few that I have spoken to about this, I am sure it has been difficult to understand why I feel so strongly against it. A port isn’t exactly the epitome of beauty either—far from it. But it is concealed; what is inside stays inside, and what is outside is purely medical device. With a Hickman, there is, although small, a permanently open wound. Nothing to keep me separated from the vulgarity of what exists; nothing to keep me from feeling somewhat “normal,” at least on occasion. 

Warning: photograph of a Hickman below

The news came in the form of an e-mail. It was unexpected, and to-the-point. For the first three days after reading the change of plans, I was engulfed in depression; a fog that permeated my being, and left me unable to think of, or see, anything else. Was there no other choice? Surely this couldn’t be the only option! I slept, researched, cried, and slept some more. Finally, I was granted a phone call with my doctor. If nothing else, I could gain a better understanding; prepare myself. And so it went, that there was no alternative; and what I am sure she thought to be the (small) consolations of, “it [being] a less invasive surgery” with the following option of, “[covering] the wound with clothing” to hide all that I find distasteful (from everyone, that is, but me). All I had read about it limiting me by putting restrictions on the amount of weight I could lift, and on some of the activities I would do as I continue to gain health, were apparently false. The one truth in what I read was somewhat obvious to me: my newly acquired freedom to swim (when my gripper is removed) was being snatched back; leaving me devastated.

While having a Hickman line inserted is less invasive than having a port insertion done, I will be getting my port removed at the same time, so we aren’t quite sure what to expect in terms of recovery. The new catheter will follow the same path as each of my port catheters did, so I am not sure if that works in my favor or not (in terms of pain and healing). I am hoping that they will be able to reduce my current scar from my port(s) when they take it out for good this time. I’m no surgeon, but I have seen some fantastic plastic surgery on TV, and while my doctors aren’t trained professionals in that field, I am fairly confident that they have some type of scar reduction techniques up their sleeves.  Though to be honest, that is the least of my worries. As long as I am getting better, this scar is a battle wound; and a positive one at that.

The date is set for Monday, March 17^th. At least with my heritage, I will have a little Irish luck on my side ;) I have been trying to pack in as much as possible before the big day; and despite an extremely painful chest from a slipped rib on one side, and port issues on the other— I had a few very successful days! Of course, now I am recovering from them with a lovely ol’ Herx reaction, but each moment was worth it. I even got a little driving in— for the first time since October!

I am slowly coming to accept that this is happening (being okay with it is a whole new ball game!) So if you could all continue to keep me in your prayers, they are what keep me going. You can be assured of my prayers as well; and as always, requests are welcome!

Blessings and love,

Kate

“When we shall see Him in Heaven, then we shall understand the price of suffering and trial. Like Jesus we shall say ‘it was truly necessary for suffering to try us, and bring us to glory.”

–St. Thérèse of Lisieux

“Hear my prayer, O Lord;
    give ear to my supplications in your faithfulness;
    answer me in your righteousness...
For the enemy has pursued me,
    crushing my life to the ground,
    making me sit in darkness like those long dead.
 Therefore my spirit faints within me;
       my heart within me is appalled.

I remember the days of old,
    I think about all your deeds,
    I meditate on the works of your hands.
 I stretch out my hands to you;
    my soul thirsts for you like a parched land.”

Psalm 143: 1, 3-6