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Category Archives: cancer

One year.

I love you, Mom.

Every moment, even the difficult ones, were a blessing for me because they were spent with you.

I mark this day in honor of a woman whose life mattered.

I mark this day in honor of a woman who loved her family beyond what words can express. It was immeasurable.

I mark this day in honor of a woman who is loved beyond her time on this earth.

I mark this day in honor of a woman who was generous, intelligent, compassionate, and downright amazing.

I mark this day in my heart and soul, like a tattoo that can never be removed.

2014-07-02-16-12-13

 

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On dogs and doctors and days (long)

It’s been a busy month. Today is the 18th, just FYI.

I got my eyes checked–for the first time in at least six years–only to find that my prescription has barely changed. In fact, the doctor wanted to roll back my prescription a smidge but I declined. I just picked up my new glasses about an hour ago and when I put them on, I felt weird. I think we ended up a tiny bit stronger, but the technician said it could also be the upgraded coating on the lenses that made me feel funky. I’ll have to ease into the new glasses, which is fine because I still have an old pair to use in the meantime. The new glasses have half-frames, so they should be lighter on my face. The second pair of “new” glasses I got are actually one of my old frames with new lenses. I would say it was cheaper to do it that way, but honestly by the time I picked the first set of new frames, I was so freaking tired of looking at frames that I just told her to put new lenses in my old frames. They were in fine condition and they were going to be my back-up pair anyway. Everyone I worked with at the optometrist kept repeating that I had single vision lenses (instead of bi-focals) and they all sounded surprised. Kind of annoying, but honestly the major reason I didn’t go back to get my eyes checked in the last six years is because at 39 years old, the optometrist told me at 40 I’d be needing bi-focals (because that’s “the age”) and I didn’t want bi-focals so I didn’t go back. And here I am, six years later, still no bi-focals. So poo on all of you. Meanwhile, I also hate getting my eyes dilated, but this optometrist had some new-fangled technology that let them take pictures of my eyes and I was able to put off dilation again.

Monday we took Le Moo for her annual “senior” check-up at the vet. We took Butthead, too, because we’d noticed her front two bottom teeth were disappearing. The vet assured me that it wasn’t likely to be the case when we talked in email, but we brought her anyway to make sure. Le Moo is healthy and has lost about 10% of her weight. She went from 94 pounds to 86 pounds, which we are doing on purpose because as she ages she seems to be more prone to limping after running or playing. She’s a big girl and we’ve always had trouble getting her to lose weight, so we gave up and she pretty much maintained a steady weight for all the years we had her. Then we saw the limping issue and we started getting really strict and we’ve noticed it paying off. We’ll keep up with it and try to keep her from injury. The vet looked at Butthead’s teeth and said they aren’t disappearing, the gum is growing up over them. Nothing to do unless it bothers her and so far she hasn’t complained. Unfortunately, the vet is 90 minutes away, so it kind of takes up several hours just going, doing the appointment, and coming home. So Hub’s MLK day off was pretty well used it by that. I’m glad Le Moo is doing well…she’s somewhere around eight years old, which is getting up there in big dog years. And ya’ll know I worry. We’re going to have to get her back to the vet to get her teeth cleaned (she’s got bad teeth, yo), so we’ll be making that trip again in the next month or so. Yay.

So Tuesday was my six month check-up with the gyn onc surgeon. Because of Hub’s status with his company (they got bought out and are in transition), I didn’t want him to have to take a day off to accompany me to an appointment that would likely last less than 15 minutes. So I sent him on his way to work and girded myself for the hour ride to the onc’s office. Under normal circumstances, I would have been nervous but okay to make the trip on my own. I made the appointment for after rush hour and I plotted my route to go on the mostly un-used toll road to avoid further traffic. But…it rained. I knew it was predicted to be “light showers” so I told Hub I’d be fine on my own. When I got on the road it was lightly showering. Ten minutes in, before I even reached the toll road, it was pouring. And I was sweating bullets, hands clutched on the steering wheel, talking myself into being OK. I don’t like driving in the rain and I hate driving on wet roads. I have been in a full 360 degree skid behind the wheel before and it’s not fun, so I try to avoid driving in weather. In addition, the toll road is 60mph, and the highway that I was supposed to be getting on at the other end is 60mph, with lots of traffic. So when I rolled onto the toll road, I basically planted myself three or four car lengths behind a dump truck and kept speed as comfortably as I could. Halfway along the toll road, the dump truck changed lanes and sped off. WTF. But I stayed steady and with the few cars on the road flying around me, I made it along the toll road. At the other end, I decided to exit early onto a main road that cuts through the city that I knew would have lots of traffic lights and lots of cars, but also slower moving. And I splashed my way along for half an hour until I got to my destination. It was a good thing I left early, and I made it with ten minutes to spare at the doctor’s office. The doctor was “only” 45 minutes late (we’ve actually waited for 2 hours for prior appointments!), he spent less than 10 minutes with me…several of those minutes were taken up when I told him my mother had passed and we talked about that. He said everything looked good for me and without any concerning symptoms he had no reason to run any tests. In July I’ll repeat a CT scan as part of my follow-up at my two year mark.

Luckily for the trip home it had stopped raining but the roads were all wet. Even so, I made my way along the major highway back to the toll road, and then meandered along the toll road toward my exit. Unfortunately again, the exit ramp I have to take from the toll road to the highway home is a HUGE flyover, which I don’t even like to drive on DRY pavement. Instead I took the exit for the opposite direction which is a normal exit and I turned around at the first traffic light. And I headed home on more regularly traveled roads, which meant I was more comfortable even though the streets were still wet.

In March I will go for my mammogram. It’s still hard for me to go to these appointments and to know when I get home that I don’t have my mother to talk to about what happened. I thought it would get easier, but so far it hasn’t.

Tomorrow I go for a “consultation” to get my hair did. The salon I selected (different from the one I used last year…partly because the stylist never answered my queries and now because I find out this new salon has more “organic” hair dye) wants me to come in to meet the stylist and to let the stylist see my hair and confirm what I want done. If all is well, I go in early on Saturday to get all the colors. ALL THE COLORS. When I was younger I used to box dye my hair all the time, mostly variations on reds because I didn’t like my plain brown hair. At some point I became too ill physically to dye my hair so I stopped. Then I did it a few more times when I was feeling better, but it was a pain in the ass and everything got all stained (including ME) and I didn’t really love the results, so I stopped again. One year I went and got my hair all chopped off and then I had the salon dye my hair but… well, I wasn’t really keen on how it looked and it seemed like the color washed out pretty quickly and I didn’t want to waste my money.

Only last year did I decide to get something done again and I wanted it to be a little funky to make my mother smile. I got a combo of auburn and violet done, but Mom never noticed and the final look wasn’t as pronounced as I had hoped. Over the past year I haven’t bothered to do anything except let my hair grow out. But after my breast MRI and my colonoscopy and my eye exam, and now my onc follow-up, I knew I wanted to do something fun to celebrate the positive news I’ve been getting. I’ve been stalking Instagram (which I don’t use) for different pictures of what I wanted and I am vacillating between something oil-slick color looking and something more jewel-toned, but there’s definitely gonna be blues and purples and maybe some teal and pink. We’ll see what the stylist says tomorrow. If I can get a picture of before and after, I’ll come back and post them.

I’ve also gone past my birthday. My father asked me three or four times if I wanted to go out to dinner for my birthday (he called around lunchtime) but I kept saying no. I felt bad because I know he likes to go out to dinner and I am sure he felt it was what he could do for me, but I didn’t want to go out. I stood my ground and I thanked him, but said I wanted to chill at home. Hub acquiesced and didn’t do anything special for dinner, but we were together so that was fine. The weather outside was crappy and icy so I was just as happy to stay inside and just BE. My aunt–who doesn’t do so good with the whole grief support thing–called and kept me on the phone for 45 minutes talking about stuff. Two of my three brothers emailed me to wish me happy birthday, and my very old dear friend did the same. But no call from my mom, which was the hardest part. Just knowing the whole day that she wouldn’t be calling and we wouldn’t be talking. It sucked. And now it’s over for another year.

Friday I will literally be in therapy while the inauguration is going on. Like I had planned it that way. The rest of the day I will be avoiding all manner of television and radio and social media. Bleh.

I am still in a pretty good amount of physical pain. The nausea is still around but it feels like less often, so that’s good. Sleep is still sucky. The imbalance is so-so. My jaw pain is still bad, though. Headaches are not quite as bad. I broke down and saw my massage therapist last week so she could work on the TMJ pain, which worked pretty well for about a day. Next week I go back to her for my regular body-work session. One day I’m going to schedule a woo-woo relaxing massage with her because she’s damn good at it (I had one shortly after my mother died as a gift to myself) and I really want it. I wish my insurance covered that shit because it is physically helpfully to me just like physical therapy was, but it’s not covered. And it’s pretty expensive for an appointment…not that I think it’s overpriced. My massage therapist is a boss and hella good at her job…and she works fucking hard to help me. I can’t even imagine how hard it is on HER body to do the work she does! I have no idea if she’s in line with other massage therapists, but I know she earns every damn dollar during our appointments.

I just realized how long this was. I’m gonna end it now. I should have broken this up into separate posts, but in my head it all felt related. Thanks for sticking with me.

 

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Post colonoscopy refresh

Well, here I am, back on my recliner trying to recover from the last two days. The last five days?

The prep, while not as bad as it was for my surgeries, still sucked. I would definitely use this prep again in the future because it was less liquid to drink, and most of the liquid required was plain water. Also, it was split into two days, so that made things easier all around.

The colonoscopy, as everyone said, was the easiest part of the whole thing. The anxiety before (and now some after), is harder. The prep is harder. The half hour before going in is harder. Screw that, the hour before going in is harder. I still feel woozy-ish from some of the drugs, but I also think some of that is the lack of nutrition I’ve had over the last five days. I’m trying to go slowly back into food, both last night and today, so my intake is still smaller than normal. So I’m tired, I’m woozy-ish, and I’m anxious a bit.

Why anxious?

Well, let’s talk about the second worst part of yesterday (the prep was pretty bad for TMI reasons)… We get to the procedure center a few minutes early and checked in. They took me back only a few minute later than I had expected but not bad, really. I go to the bathroom one last time and they take me into a curtained cube area. There are seriously like 12 or 14 beds in this whole pre- and post-procedure area. It started feeling a lot like a cattle call. Get ’em in and get ’em out. So I get into my designated cube area and I undress and pull on my lovely gown, open in the back of course. I tuck my bagged clothes under the gurney as instructed and I get onto the gurney. I’m there about ten seconds and I get an excruciating abdominal muscle spasm. I start gasping and I hear the nurse on the other side of the curtain “you okay, hon?” So I say “uh” and she comes in and I tell her what’s happening. She seems sympathetic but not entirely interested. Says it’s probably from the prep and could she please have my arm to get my blood pressure? I tell her my BP is going to be through the roof because I’m in terrible pain and she just takes my arm and hooks me up. Shortly after taking my BP (which was high, of course), I get another spasm, and then another, and then another. It’s so painful and I want to cry and go home and I want Hub but the nurse says I’m up next and there’s no time for Hub to come back. I’m clutching my stomach and there’s a huge hard baseball sized lump under my skin and she’s asking for my OTHER arm so she can get the IV in. She promises to tell the doctor about the spasm but doesn’t seem distressed. Finally, the spasm gives up and the IV is in and the anesthesiologist comes in to talk to me. Then the doctor comes in and I tell him about something else and then alert him to the spasm. “Probably from the prep” he tells me.

If it’s the prep, then why have I had them before? If it’s not the prep, was it dehydration? I don’t know, honestly, and I doubt I’ll ever know WTF they’re from. What I know is, they hurt like a motherfucker and having four in a row was so painful that I was actually GLAD to be getting anesthesia. (Maybe it was dehydration and being slumped over on the toilet for two days. Hmm…)

Even after the colonoscopy, last night, and today, my stomach is so sore from the spasm. Cramp? Maybe it’s a cramp. Stomach charlie horse? I have no idea. But moving at all is uncomfortable because that muscle is apparently involved in every-damn-thing I do. And of course the fear that it’s going to happen again, because it actually takes my breath away it’s so painful and so out-of-the-blue.

Meanwhile, post-colonoscopy, I’m told I was very nice to the nurses and kept thanking people. Literally, as they were putting anesthesia into my IV before the procedure I blurted out to the two nurses “thanks for taking care of me!” and then I was out. So when Hub assured me that I was nice to everyone even before I was really conscious afterward, I said, “Well my mother would be proud of me.” My stomach was really inflated with air from the test, so I was really uncomfortable. They made me go to the bathroom and drink, then Hub helped me get dressed and we left. Less than two hours from when they took me back to when we got out to the car. When we got home, I walked around the main floor of my house and passed air for half an hour. I know that I kept asking Hub questions about what the nurses and doctor said after I “woke up”, but I couldn’t seem to retain the answers at the time. Every time I lapped around near Hub, I would ask him another question that I KNEW I had already asked, but the answers just kept eluding me. After being on my feet for thirty  minutes straight, I was done, so I went upstairs and changed and got into bed with a small container of yogurt to get some probiotics into my system. I had some apple juice, a small omelet and some jello for dinner. After a couple of hours the air seemed to have left my system, so my intestines felt better but my abdomen still hurt from the muscle thing. I was still kind of woozy and out of it, but I managed for the evening.

I didn’t sleep great, but that’s not news. This morning I didn’t want to get out bed, but I did it because I knew I needed to be moving around. And I knew I needed to get eating again, and drinking.

The doctor said they found one small polyp, which they removed and will send for pathology (2 week wait for that). They also found internal hemorrhoids, which I can have treated at a later date if I decide to do so. “A few” external hemorrhoids, too. Otherwise, I’m told there was nothing else of note, and my prep was “good”. Once they get the pathology back, then I’ll hear if I have to go back for my next colonoscopy in five years or in ten. I’m assuming it’s not cancerous, but I don’t know if I’m being naive about that or not. Either way, won’t know for sure until the report comes back.

Onward to my next job for this week…help my dad go through his mortgage refinance on Thursday. It’s supposed to be hella cold, single digits…yay.

 

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Next up in our schedule

The ceremony yesterday went as I expected for the most part. Hub and I–and one of my brothers–stood right with my dad, in case he had an issue during the service. He really shook like a leaf the whole time, so I was grateful that Hub was there right behind me and Dad in case Dad fell or fainted or whatever. Our Rabbi was the only one who spoke, and he said very nice things about Mom…he’s known us for more than 45 years, and he was especially close with my parents for the last twenty or so since my mother served on his temple’s board for many years in several different capacities. In addition to her attending services weekly after my grandfather died. He also read a poem, which I think is kind of a standard poem for funerals, even though this technically wasn’t a funeral.

After the short service was over, I stood at the headstone for a few minutes. While I was there, my brother (the same as above) came back over and sat in one of the chairs that the cemetery provided us. I went over and sat with him (after asking if he wanted to be alone, which he said no), and after a few minutes my father came back, as did my other two brothers and my SIL. We kind of sat there quietly for a few minutes…some of us crying and some of us not.

After about another five minutes, we left Dad at the headstone for a moment and the rest of us moved a distance away. When he joined us, we left and went home to eat lunch with everyone.

The lunch was fine at Dad’s house. We mostly did a buffet style, so it was easy enough to just put stuff out and then congregate at the extended table in the dining room. When everyone but my siblings and SIL left, we hung out for a while until my father ended up falling asleep in his recliner. Then Hub and I went home for the rest of the afternoon. We went back last night to say good-bye to my out-of-town brother and SIL, as they were flying home early this morning.

I don’t feel any differently about my loss. The Rabbi kept telling me that with the passing of this ceremony, maybe my father would find some closure and his depression would lift and he’d be doing better. I don’t think that’s going to be the case for Dad. Mostly because I don’t see Mom’s passing any differently on the other side of the ceremony. It doesn’t change the day-to-day living without her. Not for me, anyway.

Now that we have passed that…milestone?…, I have to move on to things that are waiting for me. One of which is a colonoscopy. Next Monday. I was having some mild stomach issues–that mostly resolved after my PCP appointment–that my primary sent me onward to a gastro doctor. The gastro doctor talked to me about my cancer history, which puts me at higher risk for both breast and colon cancer (which I knew, which was why I went to my PCP right away), and he suggested a colonoscopy. He said it was better safe then sorry, and indicated that if all was well and I didn’t have issues, I could go ten years until my next one. Normally you get a colonoscopy starting at 50, but again because of my history, he wanted to go ahead and do it now. It’s probably nothing major going on, but I don’t want to let anything go, so I’m getting the test.

Sadly, the part that worries me the most is the prep. I hated the surgery prep that I had to do twice in three months for my hysterectomy and then oopharectomy last year. The gastro doctor prescribed a different type of prep–so no gatorade, thankfully–but surgery prep is still really uncomfortable and tiring and anxiety-inducing. The procedure itself will include propofol, so I shouldn’t remember anything. I had that with my other surgeries and they were right, I don’t remember shit after they said “count backwards from 10” and the last number I remember was 9.

I’m also worried about the recovery in the days following. With my physical issues and pain issues, I am sure I’ll be uncomfortable after. I only hope I’ll be recovered in time to go to my in-laws for the holidays.

Coming up after that are appointments for my 18-month follow-up with my oncologist, Le Moo’s yearly “senior” vet visit (and buying lots of dog pills for both dogs), and then my mammo. I also have to get in to get my eyes checked and see the dentist, but I’m saving those for after my mammo.

Life keeps going on…

 

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I don’t wanna (stomps foot)

This morning my brother and sister-in-law flew in. Tonight we had dinner at our house, with Hub and I cooking breakfast for dinner. My father came over, one of my brothers who lives locally came over, and the my SIL and brother from out of town. It was kind of a last minute get-together, but that’s fine. I didn’t want to go out to dinner again (Hub and I took Dad out last night), so we volunteered to cook for everyone tonight.

Tomorrow, we go to the cemetery to have a very small and short ceremony to reveal Mom’s headstone.

Everyone left an hour ago and since then, I’ve been feeling…not ready for tomorrow. There’s absolutely nothing I have to do for the ceremony. We’ve already bought and prepared some food for afterward at my parents’ house, and there’s nothing left to do tonight. I don’t even know if the phrase “not ready” is appropriate.

I don’t wanna go tomorrow. I just don’t wanna.

I’ve known for weeks this was coming up. And as this last week has approached, I’ve felt more and more pain in my body. And more and more angry. And more and more upset. And amazingly enough, I’ve been sleeping even less. No matter how I try to fall asleep, or stay asleep, or get comfortable, or turn out the lights early, or try to linger in bed longer…I’m even more tired.

I’ve talked to T about some of this. She gave me some insights on William Worden’s “grief tasks” which are a slightly different theory from the five stages of grief (1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance). The four grief tasks are:
1. Accept the reality of the loss
2. Work through the pain of grief
3. Adjust to an environment in which the deceased is missing
4. Find an enduring connection with the deceased while embarking on a new life

These tasks are supposed to be wrapped up in each other, so that even while you are working one, you are likely working others at the same time.

Right now, all I know is that I don’t want to go tomorrow. I don’t want to be wrapped up in sadness. I want to talk about Mom and about the good parts of her life. I don’t want to stand there and focus on the grief of it all.

No one really wants to talk about her. I want to remember her life, not languish in her sickness and her death. There was so much more to her than her last two  years. So much more to her than cancer. So much more to her than metastases. So much more to her than her death. She had a life! A long and amazing life. A life full of love and travel and learning and joy and … life.

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Tomorrow will come and go. Another day marked off our calendar, another task completed (the installation of the headstone and the “reveal”)…and still she is gone.

I used to write poetry, just like I used to write fiction books. I tried to write a poem for tomorrow but came up empty. The words don’t come anymore. There’s just this emptiness and the fervent wish to express myself somehow. And then the inability to do so.

 

 

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These days (on God and faith)

There are days I wake up feeling mad at God. And days I go to sleep feeling mad at God.

I’m not overly religious, but I was raised with religion. I follow many of our traditions but I do not attend services every week. I did not grow up attending services every week. My life now as an adult is pretty close to my life growing up. My family’s traditions and habits stayed with me through the years to now. When my grandfather died, my mother started taking my grandmother to weekly services because my grandmother found comfort in the ritual. And I think it gave my mother special time with her mother. When my grandmother passed away, my mother continued attending weekly services because I think it became comfort to her. She generally attended the services with my father, who only went because she did. Sometimes she went alone, but that was pretty rare.

I do not find comfort in weekly services, so I never got into that tradition. I found comfort in my family. That family is in chaos without my mother.

I’m angry at God for taking my mother away. I’m angry at God for not giving me the ability to heal her. I’m angry at God for leaving me with this emptiness, this pain, this loneliness. I’m angry at God for putting my father through his own personal hell.

I’ve had previous tiffs with God. When I first got sick, I was so involved with being sick that I didn’t have time to think about God’s part in it. When I got sick again–more on top of the first illness–I was tired and I wanted to just give up. I didn’t think about why I was sick, only that I was. But as the years went on and my chronic pain and other chronic issues continued, I got mad at God. Why was He letting me be in pain all the time? Why wasn’t He helping the doctors figure out what was wrong with me and how to help me?

Why did He give my grandfather leukemia? Why did He let my grandfather suffer? And why did He let my grandfather die at only 82 years old? Why did He give my grandmother an eye disease that left her mostly blind? And then the stroke? And the dementia? Why did He let her linger year after year, lost in her own mind, needing others to care for her physical body because she was no longer able? My uncle, my aunt…on and on.

Why the cancer released on my mother’s body? Why did it have to be so aggressive? Why so fast, so hard? Why did it have to ruin her body and her mind at the end? Why did He have to take her away from us?

I know a lot of people who find comfort in their faith. Some give all their problems to God and accept whatever the answer is. I don’t know how to do that. I don’t know how to get past the anger. I’m not saying I spend my days raging at God, because I don’t. But there are days when I sure want to rage and scream and ask WHY WHY WHY. How do I have trust in God and in a universe that has stolen my mother from me?

I watch commercials and I’m angry at kids with their mothers. When I’m out in stores I silently scream at kids with their mothers, wanting them to relish their time together because it won’t last. I’m jealous of Hub, who has his mother in his life. I’m so pissed off that my brothers had my mother in their lives longer than I did. I know these are petty things and don’t change what happened, but they are more reasons why I question God and faith and religion.

So many things in life I can attribute to decisions made by human beings. Why the election results? Too many people made the wrong decision. Why are people being killed in our cities? Too many people make wrong decisions, do bad things, trust the wrong people.

Why did my mother get an aggressive and rare form of cancer that took her away from me too fast and too early? I can’t blame that on a person or a decision. I can’t point to something and say, “oh that’s it! that’s why she’s dead and I’m living my life without her and my father is barely living a life at all…” Who else is there to look to? Who else was there to make the choice to give her cancer and take her away other than God?

Is any of this rational? Is anger at God rational? Does God even care if I’m angry at Him? Does God even care at all? Am I terrible for even asking these questions or feeling these feelings?

Hub often calls himself a heathen. He grew up with religion because his mother (and then his step-father) were religious. But he was very turned off as a youngster by the religious leaders in his community and he moved away from his religion. At this point I think he considers himself to be agnostic, though he deeply respects my feelings for my religion and traditions. These days I can more clearly understand his feelings, though not because of any religious leaders, but more because of my current predicament.

Despite my mother’s faith in her religion for most of her life, I don’t really know how she came to grips with any of this during her illness. It wasn’t something we discussed, mostly because I’m not sure she wanted to think about dying. At the end, I don’t know how much of her mind was still there, so I’m not sure she had time to question her faith. Even when we were at the point that the cancer had spread and there was no other medical intervention available, I don’t really know that she knew that. None of us wanted to say that outright to her, and when she didn’t ask specifically, we kept the information to ourselves. In those final days when her mind was still with her, we didn’t talk about the fact that her death was imminent.

I don’t know how to forgive God for my mother’s illness and subsequent death. I don’t know how to let go of the anger.

 

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On tests and techs and pain

I saw a breast surgeon, she said to get a bi-lateral breast MRI.

I waited to hear from her office, but really all they ended up doing was faxing the MRI order to the radiology center. She also emailed me a copy so I would have it on hand. I called and made the appointment myself, which is what I preferred to do anyway. I called and spent like twenty minutes on the phone with the scheduler trying to make sure I was getting in for the “wide open MRI”. I asked the same question about forty thousand times… you’re sure it’s the wide open MRI? Are you sure they let you do that for a breast MRI? It’s wide open, right? And that’s what you scheduled me for? I think the woman thought I was nuts, but the potential that I could get into a “wide open MRI” was enough that I was willing to wait over a week for the appointment.

I had the option to use anti-anxiety medication. I had some old-ish meds on hand, so that’s what I planned to take with me. But I hoped to not have to use it, considering the “wide open MRI” was supposed to look like this (based on the picture on their website!):

oasismri

Yeah, best laid plans.

I waited pretty well for the test. A few days before, I saw T and we actually did hypnosis (which she recorded and I listened to for the next two days) so I could get through the MRI test pain and anxiety free. I didn’t start getting nervous until the night before. The day of, I cried a couple of times, but when I went into the facility, I was okay. Nervous, but okay. They took me back and had me change into scrub pants (I had to ask for a size up because I’m just too bootilicious–actually, I needed more room in the thighs) and a hospital gown top open in the front. Then they made me sit and wait outside the MRI technician’s room, where I could see the techs performing the MRI before mine.

The male tech came in to talk to me about the test and why I was getting it. I told him I was nervous and asked if the MRI was indeed open on both sides. He frowned and said no, it was just wider inside than the old-style MRI. When he saw me shudder, he said, “I’ve had a 550 pound man in there, no problem! Does that make you feel better?” I said NO. He said, “Well, at least you’re honest! Haw haw haw.”

wide_closed_open_mri

The one on the left is the wide bore. It’s wider where you go in and shorter in length. They also send you in feet first so your head is closer to the air. Well, except I was getting my boobs MRI’d, so really I wasn’t that close to the air. More on that in a minute.

The male tech said the female tech was due back shortly and would be the person to get me on the table. I asked how long the test would take and he said once I was settled on the table it would be 35-45 minutes. He put my IV in (he wanted to put it in my hand, but I declined because YOWCH) and left me to sit while he finished with his current MRI patient. I sat quietly, I breathed, I went through the hypnosis stuff in my head. Then the female tech came in and announced, “This is going to be painful.”

WTF.

I said, “What?” She said that a lot of women have trouble with keeping their arms over their head for the whole test, and that it’s pretty uncomfortable. I said I understood, and she left to clean up the MRI from the previous patient and set it up for me. See, online you get this picture of a bi-lateral breast MRI:

breastmri5

So comfy. She’s got a pillow and a blanket and she looks like she could nap. Aww, isn’t that amazing?

Instead, what you are confronted with is this table, sitting there, staring at you, taunting you, just waiting to fill you with pain. It wants you to cry. I’m telling you, it wants you to weep.

mri2

Let me explain further, for your torturous enjoyment. You see those red arrows? They point to where your boobs go in. Nice and roomy, no problem. All good, yeah? But wait, look in between where your boobs go. See that white plastic piece there? Yeah, that one. The one that feels like it is made from concrete and is going to support the entire weight of your upper body for 35-45  minutes. Pressed solidly against what? Your sternum. You lay there, with your lower body slanted downward, but you have to have the majority of your body over that area where your boobs hang down. And it’s all resting on your sternum, on hard plastic. Narrow hard plastic. Narrow, unforgiving, hard plastic.

I had to climb onto the table and kneel down (both knees are bad, I don’t kneel on anything anymore), get positioned and then lay face down. And I nearly screamed out in pain. I have a very sensitive sternum and the muscles around it are also sensitive. I cannot even wear an underwire bra for more than an hour or two. I basically shot back up to my knees (my poor poor knees) and looked at the female tech for help. She said, and I quote, “I told you it was going to be painful.”

WTF.

I have never, in all the years I’ve been going through testing–and I’ve had a long history of lots of different and unusual tests–backed out on a test. But I looked the tech in the face and said, “I can’t do this.” I couldn’t put my weight down onto that plastic piece for more than a minute, how was I going to do it for 35 or 45 minutes? The tech offered me a narrow pad to cover the cross piece but I barely felt it. She said too much padding and I’d be too far out of the boob slot to get good pictures. So we stuffed a pillow up under my stomach and I laid down and I suffered.

See the area where you put your face, like a massage table? Yeah, they cover that with one of those caps you wear into surgery. So you’re face down into a blue plastic-papery non-breathable cap. And when you breathe? You get a face full of your own hot air. There’s no place for your air to go. And because you’ve got your full head weight all resting up there, it all gets put on your face, cuz your head be heavy like a fucking bowling ball. All on your face and cheeks.

Then they readjust your gown out of the way, shove gi-normous earplugs into your ears because the MRI machine is SO LOUD I could hear it out in the hallway with the doors closed. They shove a rubber ball thing in your hand and shout into your ear (because you’re wearing earplugs) “Squeeze the ball if you have an emergency.” And then they leave you.

I’ve had MRIs before, and normally they tell you when the test is going to start and how long that section will take. I heard the tech do it for the patient before me. But I got none of that. The only time she said anything to me during the test was, “You have four minutes left. Stay still.”

I had my arms extended over my head the whole time, I didn’t move, and I breathed so shallowly that I thought I would hyperventilate. If I breathed any deeper, the pain in my sternum multiplied by a thousand. I do not exaggerate. I know pain. I live with lots of it. This was so horrendous, it was worse than post-surgery for my hysterectomy.

At no point did I look like this:

p-mrimachine

But rather more like this:

breastmri

See that hyper-extension of the arms and shoulders? Yeah. For 40 minutes. Ouch. The MRI tube was wider than ones I’d been in previously, but it was hotter than I remembered. The MRI waves affect me. Not everyone feels it, but I feel the heat and I feel the magnets. They move across my body, making it feel like the flesh is rippling…which some people describe as “vibrations”. At some point I felt the cold slither of the contrast go through the tube she’d wound around my thumb so the tubing didn’t fall off the table, but no other warning for that. At least at that point I knew I was close to done.

When they finished, the tech came in and started sliding the table out. “Don’t move yet!” she said. GREAT. Then she unhooked me from the contrast machine and tried to warn me about sitting up slowly, but I still had earplugs in. When I pulled away from the torture device, onto my knees again, my entire sternum and chest area SCREAMED. The tech yelled at me not to stand up, to roll to a sitting position and wait. Then she approached me and yanked the earplugs out of my ears. I’m sitting there, dizzy, half blind because the room is so bright after being enclosed for so long with my eyes squeezed shut…and my chest is just so painful that when I breathe, I want to throw up.

The tech stands there while I try to get my bearings, then I push to my feet. The tech gives me the key to my locker, says, “you’re cube six” and then disappears. Doesn’t tell me where the cube is or how to get out of the maze of rooms and hallways back to the waiting room. I basically hobbled around the corner to find my cube, got dressed really slowly, then went back into the hall. I had to stop someone to ask how to get out to the waiting room. When I got out there, I hobbled to the exit and waited for Hub to meet me there. Then he helped me out the doors and as soon as I got outside, not even onto the parking lot, I started sobbing. Which hurt my sternum like a motherfucker. Hub helped me into the car and asked if I needed to go to the urgent care or ER and I said I just wanted to go home. I cried all the way home.

When I got home, Hub helped me upstairs and brought me ice packs for my chest, and I just laid in bed for three hours, trying not to cry. I had trouble sleeping last night–no surprise. This morning–one day later–every single muscle in my body hurts. My back and shoulders and arms… OMG so painful. My sternum still hurts. I can’t bend over without sucking in air from the pain.

I have no idea when I’ll hear from the doctor. I have no idea when any of this pain will subside. I’m so tired and so weary. I don’t know that I could do another MRI like that again. I wish I had been able to really tell the tech how I felt about the whole experience, including her attitude, but I didn’t have the energy or the strength at the time. I wanted to get a CD copy of my test, but I couldn’t stay in that building one second longer. I’ll have to call and order it, then pick it up. Hopefully just for record-keeping sake. Hopefully this will be nothing and I’ll have a good base-line for any potential future issues.

I’ve mostly been sitting around today. It’s taken me most of the day to write this email because my shoulders hurt so much. I don’t even know psychologically how much this trauma is going to affect me. Ugh.

(Happy update. My breast surgeon called about twenty minutes ago to tell me that the area was just “normal glandular tissue” and there was nothing to be concerned about. No follow-up needed, but to keep up with annual mammograms as usual. Yay.)

 

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