Disclaimer: I am backing up in time a little here to catch you up on my doctor visits and how I felt at the time. Since then, things have been looking brighter but I want to share with you the uncertainty and anxiety that NF2 patients face on their regular followup visits (occurring typically every 3-6 months).
On October 25th I had my 3 month followup MRI which I became anxious about a week after my last. Why? Because a week after my last MRI in July I had a headache behind my left eye which is the opposite the side of the tumor I had treated. Thus, one becomes paranoid about every little symptom or ache in fear of the other tumors growing. It is similar to the feeling a cancer survivor experiences once in remission.
How would I know what a cancer patient feels like you ask? I have lived through both. I remember that within a month of being in my remission I started having chest pains due to the scar tissue left behind and the weakening of my bronchials from radiation post chemotherapy. I remember internally freaking out as I would have a conscious nightmare that I was having a relapse with each pain. This lasted for years.
Likewise, people with NF2 experience a similar effect.....fear of the unknown but knowing what could possibly happen having lived through part of it. Prior, an MRI never bothered me really because my tumors started small and only grew about 1-2 mm every 6 months. It was not until I had an unwelcome surprise of a rapid growth of one over 6 months that MRIs became an anxious reminder of the tumors residing up there. It would not be so bad if I just had one, but I have several potential bombs just waiting to explode.
For the most part, even now I do not fear the MRI machine as do people who suffer from claustrophobia. In fact I routinely fall asleep in the machine. Back when I could hear it I used to pretend that I was an underwater welder. But drats! It it that dang needle that I have never been able to befriend after all these years!
Before you roll your eyes at my phobia, let me first elaborate on why the needle is not my friend.
a) my veins are small and hard to find
b) if my hands are cold, I appear to have no veins at all
c) once in, it takes a skilled person to be able to actually insert the needle correctly in the vein (from what I have been told, the veins either roll or the needle pierces through them)
Put it this way....I would have made the world's worst heroin addict because I would have never gotten any drugs in the vein! LOL All over the country at many different facilities there have been problems. Sometimes people who should have been skilled even make a literal bloody mess (meaning blood spurting out.....happens if the wrist is attempted). For past MRIs I have had facilities call in anesthesiologists to insert an IV for contrast dye or I have been sent to the chemo nurses beforehand.
I won't go into details of why I did not go to the chemo ward this time .....my own irresponsibility. Anyhow I was there and realized that it was a rainy cold day. No matter how warm you dress it does not make a difference because you are given scrubs to wear during the MRI. That is fine in the summer when it is warm but in the winter my arms and hands get cool and the veins shrink oe hide.
I hopped on the table and hesitated for a brief moment realizing this. But then I thought "Well surely they remember me as I have been here every 3 months for over the past year and I would highly doubt anybody else has as many tumors as I have in my head." As a matter of fact in August 2004 I was so sick that I do not even recall getting the injection and friends had to drive me to Seattle for the procedure. The ladies in the office remember me and had told me a few months back that I was looking much better (than when my head was inflated like a melon). Therefore, I thought the techs would remember about my challenging veins. (How foolish and naive of me eh?)
First, they do the scan without the dye. Then they pull me out of the machine and give me the injection (or rather they insert an IV because of my small weak veins). Keep in mind that I am completely deaf and have my head enclosed in some kind of cage to keep it lined up correctly. Thus not only can I not hear, but I can't see what is going on or when the needle is going in or if it is working or what. I just have my arm and hand out there waiting for that part to be over with.
I think I do recall reminding the tech that only the hands work and that they may have to put some hot towels or a pad on them. Last time he got my vein in one or two tries. I cannot remember. He was very gentle so it was not so bad. However, my right hand was a no go. I knew my hands were probably not warmed up enough. I think in the past at other places they have left hot towels on for about 10 minutes.
I was hoping he got the vein but I did not feel the cold rush of contrast fluid pumping in my hand and up my arm. "Dang!" I thought. "Okay just be calm. He is being gentle and will get it on the next try." Unfortunately the next time he chose the side of my wrist which made me very uneasy. Visions of wrist nightmares in the past filled my head (not to mention that it did hurt in my wrist in the past). I felt the anxiety building but tried to remain calm.
Again he was not able to get the vein. I knew once I felt the cold alcohol wipe on my wrist that we had to start over. I could see his face and when I inquired he shook his head no.
Suddenly the other tech came into the room and both of them began to investigate my arms and hands while I lied deaf in my lonely contraption. It reminded me of my record of enduring 7 pokes after chemo had finished years ago and I needed a CAT scan. Back then my veins had been badly abused from chemo injections and it was difficult to find a healthy vein. I recall feeling like a lab animal sprawled out on the table while medical staff (literally 5-8 people) pawed at my hands, arms, legs, and feet desperate to find a useful vein. In fact, thinking back on the vision now reminds me of a vampire movie where the poor victim is sprawled on his back with the beasts feeding off every blood rushing appendage.
I tried to draw myself back to the here and now. "Ok. That part of life is over. I am just here to have an MRI and you have got to work with these veins to get this scan done", I was speaking in my head.
I think I told the techs that the record was 7 pokes for in order for them to realize the gravity of the situation and that it really can be challenging to get a vein on me. Then I felt this sharp jab into my thumb. I was clenching the cage with my free hand and I could not help but outburst "Dammit! Ow!" That was the other tech. Unfortunately he was unsuccessful.
Then he began looking up my arms and I told him that it was not going to work. I was pretty upset by now but tried to hold it back. I just just could not help the last outburst. What in the heck did he poke the top of my thumb near the joint? Nobody has even done that!
Despite my warning he decided to try the arm on that hand anyway. The other tech (the gentle one) held my hand and I think I squeezed the crap out of it and embedded my fingernails into his nail beds (not purposely). This one hurt too! I also remember having a fit and moving my legs and fit around. Again I cussed beyond my control. Then something totally uncontrollable happened.
I was so upset that I began to hyperventilate! If you have been reading my blog for awhile you will remember back to the time I was at a beach with friends and this happened. I could not believe it! The only thing I can figure is that the ordeal triggered a memory or flashback of going through cancer that was emotionally overcoming. I felt like I had no control and I had to close my eyes and focus really hard to get my breathing back to normal.
I probably really freaked the techs out. Lying there with my eyes closed they could not communicate with me. I had to think of something to try to calm down and breath normally again (like a meditation). In my mind I envisioned my friend Laura at the beach telling me to slow my breathing and watching her lips expel slow inhalations and exhalations. I kept that image in my mind until I could breath again and feel the warm sun and cool breeze from the water in my memory. Then I opened my eyes.
The techs wrote to me inquiring if I was ok and looked a little worried. Unbelievably I was able to crack a joke then and remark that it was too bad I could not drink the dye instead. After that episode the tech I swore at did not attempt to poke me again, LOL It probably was just as traumatic for him as it was for me as he looked kind of terror stricken when it happened and he asked again afterward if I was ok.
In all it took 6 pokes to get a successful injection (using only a butterfly needle). After my hyperventilating act I was VERY specific of only using the hands and leaving the hot pads on for longer. The right hand just would not go that day so what eventually worked was the left hand.
When I was thinking about this sometime over the last week I remember the courage of the little boy with leukemia. I think he was about 5 years old and I found out months after my remission that he passed away. One time back in the cancer days, I went for my blood test (which they took out of my IV). An older lady and I were there waiting and this bright beautiful beaming boy hopped up on the chair and braved the needle. We were so impressed because we were such ninnies about the whole needle thing but this boy was unfazed and brimming with life. I wish I could remember his name. Now that I remember I would like to think of him and the perserverance he showed despite all the pain I am certain he succumbed to.
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