The drive to the doctors office was the perfect opportunity to work on my tanning, while knitting, and listening to an audio book. Multi-tasking is the ultimate form of distraction. Yesterday we had our consultation with the surgeon, basically a preview of what happened today. I usually don’t want to know what they are planning on doing to me, because then my overactive imagination starts churning out the most gruesome picture, and I can feel my heart-rate start to beat faster.
|Twilight on the bluff
The condo is very comfortable, and feels like it stepped out of the “beach bungalow” set of a campy movie, classic down to the carpeting. A high cliff overlooks the beach across from the condo complex. There is an elevator down to the beach, but it doesn’t go all the way, so there is a incredibly steep ramp to get down to the sand. If we managed to get down and retain control, we’d never be able to get me back up it. We stopped in the parking lot of the beach/park to watch the sunset for a few minutes yesterday. Its always nice to end the day with the peaceful glow of a pink sky.
Most of today was spent inside the clinic. I had the CCSVI procedure, and a PICCline put in. It doesn’t hurt very much now, but I am not supposed to use my arm, which is what is most irritating! Its in my right arm, my dominant, which will make everything more annoying for the next however-long I have this line in. I can only hope it doesn’t last too, too long (whoops! did I say that?).
|Surgeon Dr. Arrata, explaining arm-choice
It was decided that versus making the incision for the angioplasty in my groin, that the hole in my arm that my PICCline would be fed up through, could work for both procedures. One less cut. The catch was they could only do the CCSVI treatment through my right arm, even though I really wanted my PICCline in my left arm. It wouldn’t have been the end of the world for me to have 2 incisions, but still, I am happy with one less.
A port-o-catheter looks like a wonderful idea, too, from a doctors perspective, although until they have had a needle poked into their chest, they can’t fully appreciate how serious a decision it is for a patient to agree to have one. Luckily, Mum understood that I would never have a port again, and that a PICCline would be just fine, thank you very much. We have been waiting for months to get this line put in, hoping to do both procedures at the same time. Finally after having no antibiotics for months, I will be able to start them again. Oh boy!
The clinic is very large, the kind of place where you might end up getting something else done if you went to the wrong operating theater. But they seem very organized, so this idea didn’t occur to me until just now, thankfully.
Some people have difficulty understanding that when I say I am in a lot of pain. I realize now that the tendency is to use words like ‘pain’ where often times one means ‘aching’ or ‘discomfort’ or ‘soreness’ or ‘tenderness’. Its kind of like the word love. The ancient Greeks had 5 distinct words for kinds of love; agápe, éros, epithumia, philía, and storgē. Selfless love (Christian), romance, attraction, friendship, and affection. Don’t you wish you had those awesome ancient designations when you want to tell someone “i love you”, just not that way :P. ~
Helping, reaching, holding, moving. People hands gripping me are hotwhitepain, and I can’t speak. Its like my brain has been shut off and all that’s left, all that I can think about, is the agony, that I can’t even shout out to tell them to stop. While I was in the operating theater, the nurses kept grasping my arms and legs, in an effort to move me, even though both my mum and I explained I would probably pass out from the pain of this and be disorientated upon awakening. I am fine to move by myself, if people let me move at my own speed (which isn’t that slow).
I blacked out before they had even started doing anything to me, so of course I was terrified when I woke up. To find yourself on an operating room full of blurry strangers who are prepping you for surgery is terrifying. I tried to explain to them that I didn’t understand what was going on, that I wanted them to stop. Below the surface I was hysterical, repeating over and over again, like a calming mantra “What’s going on?”, “What’s happening?”, “What are you doing?”. I was mostly ignored by the nurses who would occasionally throw out an ‘everythingisokstaycalm’. I was of course terrified to find my arm in the hands of strangers who were scrubscrubscrubbing with iodine in preparation for the surgery.
Apparently, most people who are having the CCSVI done, have an incision in their groin, and then the angioplasty tubes (is there a word for them?) are sent up to your neck through this whole. Luckily, because I was also having the PICCline inserted in my arm, they could use the same whole to do the CCSVI procedure through. One less cut = sign me up! The drawback was they could only do the CCSVI procedure from my right arm, meaning my PICCline had to go into my dominant arm. The line can bleed if you are doing activities with arm that has the line in it, and can be uncomfortable, which is why I would have preferred my LEFT arm. Alas…
The people in the operating room became a little confused, before the surgeons entry, and also prepped my groin area (they said ‘groin’ but it was more like hips). I of course was super confused by this point, as the nurse told me that I was having a PICCline put in (no mention of CCSVI in operating room), and that ‘everythingisok’. I was at a loss of why they would have to put an incision in my groin in order to place a PICCline?? Naturally, I felt like these nurses were mistaken, and perhaps that they even had the wrong patient, so I asked repeatedly if they could go chat with my Mum and the doctor again, because this didn’t seem right to me. It wasn’t right, based on the information just given to me. By this time, I was so panicked that I was starting to have difficulty breathing, even with the oxygen. Near hysterically yet silently crying, I just kept repeating my wish that they would a) tell me what was going on, and, b) double-check they were doing the right thing.
Just before the doctor began to do the procedure, I passed out again, this time for what I suppose was longer. I woke up to one of the nurses hitting me on the head and shoulders, causing terrible agony to resonate through me with each blow. I suppose she was tapping me hard on the head to see if I was awake or not (OMG some people are just a little insensitive. i can’t say the other word I’m thinking because young lymies might read this…). The nausea from the horrific pain almost bawled me over, although I was lying down by this point. I am a weak bunny strapped down to a table, overwhelmed by the field of sterile blue, with no idea what is happening.
The only thought that does not occur to me is the only one that might have had any chance of stopping the proceedings, which would have been to sit up. Although on reflection, they might have forcibly restrained me, or given me something to calm me. Neither would have been a great option.
Everything is prepared and in its place, except me. An injection of lidocaine to the arm, and this should be the last thing I feel touching my white-hot arm. I am on quite a heavy arsenal of analgesics; Fentanyl patch (50), hydro-morphone, and IM ketamine (80) at night. Even these things do not drown out most of the pain. Perhaps it was that my body is used to these sorts of pain meds, or the doctors misjudged my weight, but the shot of lidocaine in the arm didn’t cut out the pain of the incision, which was very sharp through all my terror. I was now beyond petrified thinking that they are cutting me without anesthetics as punishment for the trouble I have been causing in the operating theater. I tried to say out loud something like ‘I can feel that’ or ‘That hurts!’, but I am not sure my lips were obeying the edicts of my brain at this point. I assume they weren’t, because they didn’t stop, or ask me what was wrong, or tell me again that everything was OK – even though it wasn’t.
When I finally was returned to the recovery room, trembling from the emotional and physical exertion, plus the pain, I tried to explain to my mum what was going on. But by this point, the breathing problems that had started in the operating room (after the injection of contrast dye) were starting to make black spots appear amid all the sterile white of the curtained room I was in. This has happened to me before, although I forget to mention it, that the contrast dye given during MRI’s or x-rays has made me feel as though very strong hands are pushing downward on my chest, making it impossible to take a breath. I tried to convey this to the nurses, but I am not sure what I managed to say, because a few minutes later I was having some very strong pain meds put through my new PICCline. I was lost for a few minutes in the peace of strong medication, and by the time I resurfaced, my breathing difficulties had all but vanished, the dye pushed deeper into my system.
|normal colored hands
When I was about ready to go, I was touching my legs gingerly as I was slipping on my pants. I cannot explain what felt different about them, but there was an odd sensation in them, that it has taken awhile to find a word for. I suppose I noticed for the first time in along time that there was a feeling from my touch, that it wasn’t just the numbness I had known for so long. On closer inspection, and with prompting from Mum (who knew what the procedure could do), I also noticed that for the first time in years, my hands and feet were warm, not hot and clammy, nor ice cold and unmoving, but a regular ‘I’m-not-too-hot-nor-cold’ feeling. Lukewarm. And not purple/red/white/blue, but a fleshy peach color. This was so surprising!
I had no recollections of any of these proceeding at all, as I was discharged after a few hours, and was eating some bland foods in the car. It wasn’t until hours and hours later, with an emotionally unsettled feeling in the intervening time, that these memories, clear as anything, came back to me. I was lying in my darkened room, alone, and in pain, and I am not sure if it was because I had finally calmed down and was beginning to relax, or perhaps the fresh bouts of pain brought on the old memories. I just know I was crying hysterically again, and trying to tell my mum and Nancy that the nurses had hit me (which was what I remembered most vividly), then the rest of the ordeal following. Where did these thoughts come from? How come I can’t remember what I ate for dinner, or what we were talking about 3 minutes ago, but remembered all the traumas of the OR. It’s not fair. Perhaps the memory was seared into my mind because of the shock of the experience.
All in all, it was a very trying day, and I plan on relaxing the rest of this weekend.