MRI

I Put the Christmas Tree Away (thoughts on normalcy & moving forward)

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Christmas Tree circa 2009

I took the Christmas Tree down yesterday. I know, you’re saying, “You took the Christmas Tree down in May? What were you waiting for?”

Well actually, I normally keep our tree up all year long and decorate it for each season. Unfortunately, for the last 2 years I haven’t felt up to changing the decorations with each season so it has sat there with only its Christmas lights on it looking sad and neglected with half of the lights burned out, but I’d faithfully turn it on every night. In a way it became a security blanket for me. To me it represented normalcy even if it wasn’t what it once quite was.

I took it down yesterday. I talked about taking it down for months but yesterday was the day. I don’t know why yesterday was the day I finally got the gumption to take it down, but it was. The poor tree was covered in dust and filthy. It had sat there for 2 years unattended to but loved so very much. It was my comfort item. In a way I’m sad that it’s gone but then I look around the living room and I love the space it being gone frees up. It feels like letting go.

I suppose I should also tell you that I spent the other part of yesterday making my next round of medical appointments; blood work and 2 MRIs in June, follow-up appointments with the oncologist, neurosurgeon, and plastic surgeon in July. I’m coming toward the end of my 6 weeks of physical therapy and I am feeling good. As I’ve noted in my many late National Photo Month posts I am sleeping through the night, which is incredible. I’ve had epic runs of insomnia over the past 2 years with patches of less than fitful sleep in between. But now I’m sleeping soundly almost 8 hours every night and I feel great.

I’m feeling good. I feel like a fog has lifted, like I’ve come out of a coma or maybe a deep depression. The physical therapy has given me the use of my left arm back. I’m feeling stronger. I wish the doctors had prescribed physical therapy of some sort when I came out of the hospital in October 2010 if only to get me moving. The physical therapy is helping in so many other ways than just fixing my shoulder. I feel like I’m accomplishing something. I have a sense of purpose. I feel like I’m doing something to help make myself better.

1 biopsy, 4 CAT scans, 4 MRIs, 5 surgeries, 6 weeks of physical therapy, and 32 radiation treatments (not in chronological order) later I am starting to feel normal. But then a day like yesterday arises; a day when I vacuum and I do laundry and I take the not-quite-itself Christmas Tree down just hours after making my medical appointments and I wonder what is normal? For the next 2 years I will have to have MRIs every 3 months to check if the cancer has come back. It’s been a little over a month since my last follow-up with the oncologist and I’m feeling good so I have moments, days, weeks even when I can sort of forget and let go of the fear and the anxiety and then there are days like yesterday when I face forward, put my security blanket away and hope for the best.

I put the Christmas Tree away and for now that has to be enough.

365 Days of Carol Anne (MRI Tales Part II)

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Day 211


(Commentary added Sunday, July 31, 2011)

Hey kids! Sorry I’m adding words on the next day for the second time. I was so sleepy last night I couldn’t stay awake to compose a coherent post.

I had my MRI on Saturday morning. I woke up really anxious and so I decided to take the Xanax. I read that it takes 15 minutes to work so I took it in the parking lot before we went in. We went in, checked in, and took our seats while we waited for me to be called. The waiting room was empty (on a Saturday morning?) and I was called even before I’d finished filling out my form. The nice MRI technician went through the form with me and we were about to be off and running until *insert sound of needle scratching across record here* she said, “Did you already have the neck and soft tissue study or are you coming back for it?” (Here is where I fell apart at the seems) “No,” I said. “I’m here for both TODAY.” She said, “No, you’re only scheduled for a brain scan today, we don’t have time to do both. I have an appointment at 2:40pm on Monday.” Because, you know if I was able to have this done in the middle of the afternoon I’d be there at 9:30am on a Saturday morning. Come on. Be reasonable. *shakes head*

I ran out into the waiting room to freak out to Chuck. He’s used almost all of his time off at work running me to and from doctor appointments and radiation treatments and there are still 5 months of the year to go before his PTO time resets. He went up to the front desk and talked to the woman and she went back to talk to the MRI technician. It was decided that I would have the first half without the contrast (dye) right then and that I’d have to come back at noon to have the second half with the contrast (dye).

I should stop and tell you here that I decided to go to a new place this time around and it’s been a hot mess from the beginning. My problems started with them either throwing away or misplacing the order faxed over by my doctor’s office because I was not already in their system. It continued with having to call back to give my insurance company’s phone number and not being able to get back to the actual person who scheduled my appointment because she did not leave her last name.

I should also tell you that by far and away my actual MRI experience was much better here. Because I was so upset and freaking out, Pam, my MRI technician allowed Chuck to sit with me during the first MRI. She spoke to me through the whole test telling me how many minutes each scan would last and when the table would move and when the noises were going to be loud.

Now if only we could somehow merge the office efficiency of the first MRI place and the really good job the actual MRI folks did at the other we’d have the perfect MRI location.

I was so upset yesterday that I was unable to articulate what I was actually feeling. I wish that I’d have been calmer. I wish that I would have asked for a manager or supervisor so that I could have registered my complaint. Because there’s no point in having the doctors’ secretary spend her precious time faxing an order over to the MRI location if they’re not going to schedule the correct appointment. It’s not as though this was a verbal miscommunication, I saw the order, and the MRI technician saw the order and both of us were aware of the neck and soft tissue scan. So it bears asking, why was the person doing the scheduling not aware of it? Thank God they could accommodate me on Saturday.

I said on Twitter that it’s not the cancer that’s going to kill me but instead the constant miscommunication and scheduling snafus that are going to do me in. I think that is what the medical profession needs to work to improve. When my radiation treatments turned out to be 32 instead of 30 the reply pretty much was oh yeah the computer sometimes cuts off after 30. *looks astonished* I’m sorry but that’s not small thing. Not to me anyway. And I’m sure not for many other people as well. When I made my appointment and chose this location because they do have weekend appointments it was because Chuck just cannot exhaust his already depleted PTO time. There are 5 months remaining in 2011 and there are no guarantees in life. I could very well walk into Dr. Bussey’s office on Friday and find out that the cancer is not gone.

Chuck hasn’t had one day off that wasn’t to take me, or his father to a medical appointment since October 11, 2011. There hasn’t been one down day for him in almost 10 months and yet he’s almost completely out of time. Every minute he sits in a doctor’s office with me brings him another minute closer to having to take unpaid time, some of which he’s already used to get through the radiation treatments. Every minute a doctor keeps us waiting costs us money and time. I think that’s what the medical profession needs to fix on a grand scale. I had an 8:30am appointment and wasn’t even seen until an hour later. That hour was an hour of Chuck’s PTO time.

I can’t think of one person who isn’t at least a little anxious about having an MRI. The nonsense of not having the correct appointment scheduled only adds to the anxiety.

365 Days of Carol Anne (Learning to Love Myself)

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Day 36

Hola kiddies! I hope tonight’s post finds you all well and in good spirits. It was a quiet rainy day around here. We didn’t do much. We ended up driving around a bit and then stopped at Burger King for dinner and as it turns out it was a nice quiet casual time for to us to sit and talk about my coming radiation treatments. Nothing too deep or serious and it came in dribs and drabs but it was nice (if you can call talking about radiation treatments nice) to just talk.

This project is very important to me so I’ve asked the hubs to make sure it continues through the radiation treatments. I’ve asked him to snap a pic and post a bit on days if/when I’m feeling to sick or too weak. I’m hoping I won’t need him to but since this project is important to me I want to see it through. I want this to be someplace others with cancer or other illnesses can come to read and perhaps alleviate some of their fears. I’m sure no two cancer experiences are the same but I think having at least a vague idea of what’s to come is at least a little reassuring. I wish that I’d have thought to take pictures of the CAT scan and MRI machines when I had those tests done. I think part of the fear is not knowing what to expect. I was so terrified of the MRI and then once I got in there and actually saw the machine I was like Oh I can do this. I got this. Had I known ahead of time what the machine looked like I wouldn’t have worried so much beforehand. If I have any more CAT scans or MRIs I’ll ask the technicians if I can take photos of the machines. I’ll see what I can do about documenting the radiation process also.

It’s almost midnight so I better get this posted before I actually end up missing a day without actually missing a day. *laughs* Sleep easy my dear lil readers. (((hugs)))

Write, He Said (Major Surgery & the Road to Recovery) — MRI Tales & More

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Hola kiddies! It’s Monday, December 13. It is 1 week until my 38th birthday.

I’m back to tell you that I survived the nasty cold I caught over Thanksgiving weekend.

I also survived the pneumonia shot I received on Monday, December 6.

You can also add to the survival list an MRI, a cat scan and an ultrasound. The dye didn’t kill me nor did the fear of being sucked into a super magnetic tube. Yay me! I had Xanax to take in case I needed it but I opted to tough it out. As it turns out it wasn’t so bad. The tube wasn’t all that long and was open on both ends so it wasn’t like being encapsulated in a big closed in tube.

I was quite nervous about having dye injected into my veins twice in one day and I was none too thrilled at the prospect of being encapsulated in a big tube while magnets scanned and created a picture of my brain. I decided against taking the Xanax before the MRI because A. I’d never taken it before and B. I read one of the possible side effects is hallucinations, which sent me worrying that I’d hallucinate while trapped in the aforementioned magnetic tube. (see i told you. i worry in detail and i have a fabulous imagination.)

I suppose it was a good thing I was awake and alert and untranquilized for this visit as I had to answer quite a few questions and sign my life away before I ever made it into the room. Now to offer you a little back story. During the operation the neurosurgeon put a titanium plate in my head. For anyone who’s never had an MRI you have to remove all your jewelry and there is to be no metal of any sort in the room. This includes things implanted in your body i.e., stents, pace makers, insulin pumps, etc. I told the girl who made my appointment that I have a titanium plate in my head. Sure, no problem. I told the girl who was checking me in that I have a titanium plate in my head. Sure, no problem. I tell the doctor who walks me back and takes my information that I had a titanium plate in my head. Problem. He gets the MRI tech and I tell her the same info I just told the him including the bit about having a titanium plate in my head. She asks me, “Does it have screws in it?” Me: ~ blink ~ ~ blink ~ ‘”Ummm … I don’t know.” I tell her that I e-mailed Elizabeth, the nurse practitioner who works alongside Dr. Bussey, my neurosurgeon and that she said the MRI that they ordered was safe for me to do because the plate was made of titanium. I also told her that said e-mail was on my iPhone, which was out in the waiting room with the hubs and asked if she’d like to read it. She did and so we made our way out to the waiting room to retrieve my iPhone and Elizabeth’s (nurse practitioner) card so the MRI technician could call Elizabeth.

A decision was made to have me to do cat scan first so they would be able to see where the plate was before doing the MRI and allow the technician time to call Elizabeth. The cat can of my head took about 5 minutes. After I was finished the MRI technician came to get me. I asked did she talk to Elizabeth and she said, “No.” She said but that was okay because the e-mail pretty much spelled it out and that “If I was confident she was confident.” ^insert me looking alarmed here^ She went on to say that since it was my neurosurgeon ordering it she figured he knew what he was talking about and so she was okay with going ahead with the test. ^insert me looking alarmed here also^

I was here for the MRI and so I took a deep breath and walked into the MRI room all the while hoping that Elizabeth and the MRI tech knew what they were talking about. All I could think of while I was in there was that my head was going to be sucked up to the top of the machine. The MRI itself took about half an hour. The first part of the test was without the dye and the second part of the test was with the dye (more anxiety). I can happily tell you the machine didn’t swallow me, I didn’t die from the claustrophobia and the dye didn’t kill. All in all a positive experience. I won’t know anything about the MRI or the cat scan until Friday when I see Elizabeth and Dr. Bussey.

Earlier in the week I’d seen that Guitar Center was having a big sale so after the MRI we took a ride over to the Guitar Center in Cherry Hill so the hubs could buy himself a guitar stand for his acoustic guitar. The sky was a pretty mix of sun and clouds in anticipation of the next day’s rain. I used my iPhone to take a few photos. (i really need to remember to take my good camera with me everywhere.) This is the best of the few shots I took.

Tomorrow I should know the results of the ultrasound and find out if the Lovenox is causing the higher liver number or if I have gallstones or a fatty liver. I’m hoping it’s nothing. Who am I kidding? I’m praying it’s nothing while trying (and not doing a great job) not to obsess or worry too much about the outcome.

I’ll be back tomorrow with more Reverb 10 posts.

Love,

~ Carol Anne

Write, He Said (Major Surgery & the Road to Recovery) — Upcoming Doctors’ Appointments, Blood Tests, An MRI and Fear of the Unknown

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Hey! Good evening kids. It’s going to be a bit of this, that and the other thing tonight. It’s been a while since last we spoke. I caught a cold over Thanksgiving weekend and have been kind of miserable. I did manage to write one politically themed post but I just wasn’t up to writing about recovery this week. I’d say it was kind of nice to just have the common cold this week instead of having cancer and recovering from brain surgery but I spent most of the week monitoring my temperature making sure I didn’t spike a fever. 

I spent most of Monday morning making doctor appointments and scheduling blood tests, a Cat Scan, an MRI, a flu shot and a pneumonia shot. In about ten minutes I’ll have to finish drinking my soda and fast until my scheduled 9:30am blood test appointment. I was scheduled to get the flu shot directly thereafter but since I’ve been sick all week that had to be rescheduled until next Sunday, which is the day after I’m scheduled to have both the MRI and the Cat Scan. 

Hopefully I’ll be able to get my pneumonia shot on Monday. We’ll see what the doctor says. I get a break on Tuesday I have no doctor appointments scheduled. On Wednesday I head back to the plastic surgeon’s office to see if the two big scabs on my head are ready to come off *shudder*. I’m totally freaked out about this appointment. 

I wonder if other people worry about upcoming medical procedures like I do. I’m so consumed with worry that in removing the scabs from my head the doctor will make me bleed. I’m on blood thinners and I’m terrified I’ll bleed heavily and end up in the hospital. I realize that she’s a medical professional and I should put my trust in her but all I can focus (fixate?) on is things going terribly wrong. (I worry in technicolor and I have an amazing imagination) The same goes for the MRI, Cat Scan, flu shot and pneumonia shot. I’m worried I’ll have some horrifying allergic reaction to the dye/vaccine and end up dead or in the ER. I know I should have faith in God and in my wonderful doctors but I can’t seem to let myself relax and put it in their hands. It’s like I blogged about earlier this year in On Flying Planes & Treating Depression. I have no control over what happens. I can’t make the scabs come off cleanly. I can’t even watch because they’re in the back of my head. I can’t control what the dyes/vaccines are going to do to my body. I don’t know how to deal with that. I like being in charge. I like controlling my circumstances. I’m afraid and I can’t do anything to fix that. I have Xanax for the MRI, which they tell me should last about half an hour but I can’t exactly go around popping Xanax every time I have to have a shot or take a pill though I very well may request a full prescription and stay on it during radiation treatments. I’m not sure I’ll be able to tough those out on my own. I can’t bring myself to worry about these in detail just yet. 

Once the scabs come off and the plastic surgeon clears me for radiation the neurosurgeon and his tumor team (really, they couldn’t have come up with a better name?) will use the information from next Saturday’s MRI to plan my radiation treatment. No matter what happens I have an appointment with the neurosurgeon to check my progress and to see if the blood clot has shrunk any more on Dec. 17, which is 3 days before my 38th birthday and 8 days before Christmas. I’m hoping for all good news but I’m worried about that too. It’s not as if I can look in the mirror and see if the clot in my brain has continued to shrink. I can’t monitor whether or not the tumor is in there growing as we wait for my head to heal. The uncertainty, the inability to control any of this makes me feel powerless and out of control. I can’t do anything to make anything better. All I can do is wait and do as the doctors tell me to do, take my medicine and have faith in God and the doctors. 

I wish I could tell you that I have that kind of faith but I suppose I just don’t. I believe in God, I pray, I go to church. I have faith, I do. I believe that God loves us all and that he’s there at the very darkest moments holding our hands and helping us through. I believe he doesn’t send us more than we can handle but the worry wart in me can’t get past knowing that bad things happen to good people every day and no one gets through live without suffering. I don’t want to suffer. I don’t want to be sick and I hate this being powerless to do anything but trust. I don’t want to trust. I want to do. I’m scared and I have moments when I’m overwhelmed with anxiety. I can’t be the only person who feels this way, right? 

I read these blogs of people who are going through so much worse than I am and they write so eloquently about their trials and tribulations and how they’ve put their faith in God. I feel so much less faithful than they are. I feel like a coward reading these stories of people facing sickness and hardship head on. If it were up to me I’d run screaming as far away as possible. If you’re one of those people and you’re reading. How do you do it?