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Mammogram scare

Because I had endometrial cancer, I have to be extra vigilant with my mammograms. Apparently there is an increased incidence of breast cancer and colon cancer in people who have had endometrial (estrogen based?) cancers. So I try to be vigilant since I started getting mammograms.

I normally get my mammogram a day or two after I’m eligible. I had this year’s appointment set, but the morning of I woke up feeling really bad, and I ended up with vertigo episodes. So Hub called and cancelled and I rescheduled two weeks later. I went to the same place I always go to, only now I was pushing a rollator for balance in case I got a spin while there.

The technician was very nice and the tests went as expected. You spend more time waiting for your appointment than the actual (2d and 3d) tests take. I went home feeling I had done my duty and all was well. Only I got a call several days later from my gyn-oncologist’s office (his nurse) saying they found a new mass that they wanted to do more testing on. I had to set up a diagnostic mammogram and an ultrasound.

AFTER I freaked out for several days, I started looking at the reports and realized that I have (what I had been told five years ago was) a cyst where they thought they saw a mass. Because I’ve lost so much weight, I think the tech was a little overzealous grabbing my looser skin, and she got the cyst all squished up onto the plate for the mammogram. But I wasn’t taking any chances, so back I went for the follow-up testing. The new tech put a little thingy on my cyst when I pointed it out and took their diagnostic pictures. Then they sent me to the ultrasound room and the tech did her thing in there. The radiologist came in to see “live” testing and pronounced it “probably benign.” WTF? He 97% sure it was a benign fibroadenoma, and was nothing to worry about. But now he had ME freaked out again, so I set up an appointment to see my breast surgeon (from the last time they “found something” which thankfully ended up being nothing). When I got in to see her, she looked at the films and reports and then at me (it’s next to my boob in the area they call the axilla) and said “that’s a cyst.” I said “why did the radiologist call it a fibroadenoma?” She said, “they are trained to look for breast issues, so that’s all they think about.” She told me if I wanted to have it removed and tested, she would do it, to have 100% certainty that it was a cyst and nothing major. I said “YES PLEASE” so I didn’t have to think about that 3% is it or isn’t it? Or that something was hiding behind the cyst that they couldn’t see on the mammogram because the cyst was in the way…

I schedule the out-patient surgery (local anesthetic), but then ended up with all that shit about the Reynauds and artery issues and so we postponed. I’ll need to reschedule that soon.

So hopefully this is another year gone of mammograms with nothing coming of it. Except more stress and anxiety. I’m having a lot of that these days.

That’s it for now.

 

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Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

 

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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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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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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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CT Scan follow-up

I had my CT Scan for my one year post-cancer follow up about two weeks ago. I had my appointment with my gyn onc a week ago. It feels like longer.

I had a chest, abdomen and pelvis scan, adding in the chest because of a cough I’ve had. I assume(d) the cough is from my allergies, but I figured as long as I was going in I might as well just be sure. I was also supposed to get checked for kidney issues–as per my urologist–but it didn’t quite work out the way I expected.

I went in with my forms and told them I was getting checked for kidney stones in addition to my cancer check. This was post-barium-drinking. The woman at the front desk frowned at me and said that the barium screws up their ability to see kidney stones most of the time, so she shoved the prescription back at me. I asked her to go ahead and send the films to the urologist anyway. Why didn’t anyone tell me about this issue? But the urologist knew my gyn onc wanted with and without contrast, so she had to know it wouldn’t be the best view. Besides which, I think she knew I didn’t have stones, but this was a CYA kind of thing. Btw, I never heard back from her after the scan. Joy.

If you saw my ct scan post (linked above), you may have seen my comments on the post. I survived the scan (obviously) with residual pain and feelings of BLECH. I actually got my written report the day after the scan, but without commentary from my doctor. Just the report showed up. It was not remarkable, with the exception of some finding of soft tissue in the center of my chest area, which was declared as possibly “thymic rebound”. WTF is that? I did a NO-NO and looked it up, which actually resulted in very little information. So I messaged my gyn onc, who basically told me to take it up with my primary, as it was outside his expertise. He otherwise called my CT Scan as NED. I am a bit distressed that this scan didn’t mention views of my lymph nodes like the first one did after diagnosis, but I’m hoping that means they were not remarkable (and not that they didn’t bother looking…)

I contacted my primary doctor’s office and she’s out of the country until the end of July. That’s more than 3 weeks away, so I asked for someone else to review the report (because I don’t think they actually get to see the images). The interim doctor said it didn’t look like anything concerning, but I should see my primary upon her return. WTF.

So while I was sitting around waiting for THAT to happen, a relative suggested I get a second opinion on my ct scan images. I didn’t even realize that was possible, but back to Google I went. Turns out there are places online that will allow you to send them your images and have another trained and licensed radiologist read them. I had to pay on my own, but I wanted to get it done ASAP, so I forked over the cash (it wasn’t actually that bad, in the grand scheme of things). After some issues with uploading and getting them the clinical history they needed, they read my images. I got a written report about five days later (including a weekend).

Good news, the soft tissue was “without clinical concern” and was “minimal residual thymus”. The thymus is apparently an organ that is in use only before your immune system is developed, then it shrinks away to almost nothing. Sometimes when you go through chemo, radiation, surgery, or some other major issue, the thymus regrows to help your immune system, then shrinks away again. Since I’ve not had a chest ct before, I guess there was nothing to compare it to. Anyway, that was all good.

You see it coming, though, don’t you?

There is some asymmetric nodular tissue in the right breast axillary tail region compared to the left which is nonspecific.

Unh. I had my mammogram in February, with no notation of issues. I know there was something in my first mammo that they immediately followed up with using ultra-sound. That was then noted in my charts, but it was supposed to be benign. The wording is a bit different on this second opinion report (of course it IS a CT versus a mammo, so…). So I figured it was the same issue as before, but sent the second opinion to my gyn onc anyway, asking if I needed to follow-up somehow. After no response for several days, I sent another message today asking for a response.

The response was, “this isn’t my area of expertise, but here are three breast surgeons we regularly refer to”.

Cue uprising of anxiety and distress. Cue Googling the phrases in the ct report. Cue seeking some place of numbness.

Cancers based in estrogen “travel in packs” said my gyn onc upon my original diagnosis over a year ago. Breast cancer is one of those in the pack. The only history of breast cancer I know about in my family is pretty limited…supposedly my paternal grandmother had it, around 50-years-old, but my dad doesn’t remember details. My mother thought my grandmother had a mastectomy, but we have no way of confirming that.

So I messaged my previous gyno, who is in my area (my gyn onc and his suggested breast surgeons are all at least an hour away) to see if they can recommend someone I can see here locally. It’s only been about an hour since I sent that message, so I haven’t heard back. They might not be interested in responding because I haven’t been back to them since pre-surgery.

I am not having a panic attack. I am anxious and concerned. I am unhappy. I am fearful. And I am angry.

I don’t quite know what to do with myself at the moment. I had hoped writing about it would help. So far, it has not.

 

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One year scan

Tomorrow is my CT scan for my one year cancer check-up. Bonus, they’re also going to send the pictures to my urologist to see if there’s anything going on with my kidneys that we need to know about.

I’m getting a pelvis, abdomen, and chest scan. I get to drink barium and they’re going to do scans without and with contrast. Yay.

It’s been almost a year since my last scan, where they were looking for enlarged lymph nodes or anything else unusual…I think it was before my surgery, but it might have been before my second surgery. Or just after. I sort of remember the test, mostly because they had a problem with the pump that runs the contrast into your veins and the tech had to come out and fiddle with the pump. Talk about anxiety-provoking. I also remember that it was uncomfortable keeping my arm in position with the IV in it for the contrast. Does anyone ever have an IV that doesn’t hurt when you move your arm? Or hand?

I know the CT scan isn’t invasive. I know the worst part is probably going to be drinking the barium. I know the contrast is going to make me feel warm and flushed and like I have to pee. I know the table is going to be uncomfortable. It’s likely I’ll be done in half an hour if everything goes well. Maybe an hour, since I’m getting with and without contrast (last time it was only WITH). But I don’t remember the test per se…how hard was the table, how difficult was it for me to lay on my back, was I able to prop my head up, did my back hurt, did I feel claustrophobic…etc.

I’m still feeling nervous and anxious. I want it to be over.

I know I’ll come home and not be able to share the experience with Mom. I miss her over and over again. Every time I do something. Every time I want to share something small or silly or happy or sad, I miss her.

 

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Fraudulent

These days, I feel like a fraud, a lot.

My name is on a lot of paperwork. My responsibilities grow every day, extending to things I have no comprehension about. I spent at least two evenings researching legal terms to try to understand the trust that my parents’ lawyer put together for them. I have spent many hours pouring over the legal documents–alone, with my mother, with my brother–trying to figure out what the trust is actually saying. To find out if it is done the way my parents want it done. To find out what the future will look like when one or the other, and then both, have died. There are complications that make the trust not quite so simple. But then again, it’s all legal mumbo-jumbo, so there’s nothing simple about it.

I’ve had to sit in on a meeting with the lawyer as he explained the trust, then had my parents’ sign the paperwork. I’ve had to take copious notes on things I do not understand in order to repeat the information to my siblings. I’ve had to chase the lawyer, then return a phone call to the lawyer, then listen as he explains things again while I try to take MORE notes to explain things to my siblings AND my parents. I’ve been mid-way into making dinner when I’ve been called on the phone and summoned to my parents’ house to explain parts of the trust that I have no understanding of.

I’ve had to fill out paperwork to get bonds reissued. I’ve had to fill out online accounts to get online bond accounts created. I’ve had to fill out paperwork to get bank accounts changed over into the trust.

I don’t know how to do any of this stuff. I’ve researched and bluffed my way through. I’ve walked away from meetings, conversations, phone calls, summonses, feeling like a complete and utter fraud. I don’t have the answers. I don’t understand the terminology. I don’t remember–or know–why things were done the way they were done. And yet, all of this has been asked of me. And yet, I’ve answered the call to do everything they’ve asked of me…and I feel like a fraud.

My mother is making plans to take a trip overseas this summer. She’s buying tickets, making reservations, looking into itineraries…for a trip that even IF she is still alive, she will likely be too weak and too ill to take. I listen to her talk about the trip, and I keep my big mouth shut. I know she needs this. I know she needs something to look forward to and something to concentrate on. And every minute she talks about the trip, my heart breaks a little more. I won’t stop her from making the plans–even if she ends up losing money over it–and I won’t tell her she won’t be able to make the trip. I won’t tell her how much it hurts for me to watch her make the plans, knowing in my heart that she’ll never be able to follow through on them. And I feel like a fraud.

My whole body hurts. My knees are popping with every step the last couple of days. The back of one knee hurts. The back of one thigh hurts. My back hurts. My hips hurts. My shoulders hurt. My arms hurt. I limp my way to Mom’s house–there and back–feeling so tired and so painful. Yet when I’m in their house, I hide the limp and I hide the pain and I hide the fatigue. It’s all a lie. When Mom asks, I’ll tell her I’m “tired” but it’s nothing new. I have trouble standing because my feet hurt from the plantar fasciitis, but I stand anyway…I walk anyway. I don’t tell them. If I told them, they’d be upset and they’d tell me to go home or stay home. But things still need to be done and unfortunately, I’m the one around to do it.

I had a doctor’s appointment this morning. My mother scheduled an eye appointment without realizing I had an appointment of my own, so they went without me. On the way home, they were supposed to stop at the bank to get some papers notarized and others that needed a bank’s seal. I had all the paperwork marked with notes as to what needed what, with “sign here” post-its and post-its showing which needed notarization and which needed the bank’s seal. They called from the bank, saying they didn’t know what they needed to have done. I had gone over all of it with Mom, and everything was marked with post-its and notes. And they were confused. The bank rep was not helpful either, arguing with them over what had to be done, confusing them more. Upsetting them. They came home without getting anything done. I have to go back with them tomorrow.

I chase the lawyer, who isn’t terribly responsive most of the time. I chase the insurance agent. I chase the investment advisor. I chase the doctors, I make–and cancel–appointments. I keep the calendar. I watch the mail and the email. I make and print the pill schedules. I schedule and oversee the cleaning crew. Hub and I even buy groceries. A lot of these things are even more stressful for me because I don’t like to do them. I don’t like making phone calls and asking questions. I don’t like talking to people that I don’t really know. I don’t like calling doctors’ offices. I don’t like taking responsibility for things that are uncomfortable or outside my bailiwick.

I know I’m not irreplaceable. I know someone else could help them. But right now, there’s no one else to do all these things but me. And these things need to be done sooner rather than later. Sooner, before Mom gets sick again and can’t…do things.

I do the things that need to be done. But underneath it all, I feel like I’m bumbling my way through. I feel like I’m bluffing and guessing…and kind of hoping for the best. I’m pushing myself to do things I dislike–with much distress–because they have to be done and no one else is doing it.

I feel like a big, fat, fraud. I know it’s in my head, it’s only me and no one else expects me to do everything the way I’m doing it. And I’m not doing everything alone. My brothers are doing the things I’m asking them to do. But I’m still coordinating it all. I’m asking them to do things. I’m making sure they’re getting done. I’m still at the center of things getting done. And I’m not good at doing that AND I don’t like to have to do it…so it’s another case of feeling like I am a fraud.

It’s difficult to be stepping in on my parents’ lives like this. Things that in the past they would have done on their own without question, they can no longer handle them. I’m the youngest of my siblings, so it’s strange for me to to feel like I’m the responsible one among my parents AND my siblings. This is a tough road to be on. I hope I can continue to do what needs to be done and not beat myself up too much over the way I’m doing it.

 

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Shave and a haircut…

…two bits.

Mom finished her radiation treatments today. The nurses at the radiation center are beyond amazing women. I can’t tell you how phenomenal it is that these women go in to work every day and help people who are battling life-threatening diseases. How they go in every day, knowing that they’re seeing people who are so sick…who might not make it in for the next treatment. Some who can’t get out of chairs because they are so weak and frail. And yet these nurses smile and hug and encourage…and they love.

This was the second round of radiation for Mom. The first was pelvic radiation, this time it was brain radiation. When Mom came back in for this second round–the first was last summer–the nurses recognized her. They hugged her. They carried her puke bucket for her. They showed her pictures of their lives–weddings, children–and they remembered that she crocheted special hats for them. They greeted me and they greeted Dad like we were friends.

So Mom rang the bell at the radiation center for a second time. The nurses gave her a certificate–that they each signed after they wrote very sweet things–as well as a cover for her puke bucket that re-assigned as her “crochet bucket”. I took pictures of Mom ringing the bell, but it was harder to feel excitement. This was the second time she’s rung the bell for treatment completion at the radiation center. Adding in the chemo center, she’s rung a bell three times…and yet I know that the cancer is continuing to grow. There’s no question in my mind. This cancer is so aggressive, there’s not going to be any stopping it.

I smiled and cheered Mom on as she rang the bell. Afterward, we went out for lunch with Hub and my oldest brother, and my other brother and his wife surprised Mom by showing up as well. After we all stuffed our faces, I went back to my parents’ house with them to get Mom settled. We talked about cutting her hair as we drove back to the house because the radiation was causing Mom to lose her hair again (due to the location of the radiation beams). She had pulled out some clumps already and we’ve seen her shedding hair at home. It was clear she was irritated, so I offered to cut her hair really short. She usually wears her hair short-ish, but I’d say it was about 4″ long at the longest area. I started cutting and then my brother brought down his hair clippers, so I proceeded to shave her hair (with a guard) really carefully so I didn’t irritate her scalp. I left her with about half an inch of hair. Enough to keep her head from freezing, but not long enough to irritate her when it continued falling out. She thanked me and then we got her settled onto the couch so she could rest. Dad and I cleaned up the hair from the floor, then we ordered pizza and calzones and strombolis from the local pizza place. Mom wanted the food for the weekend (she had a hankering for it), in case the restaurant wouldn’t be open after the snow. I rubbed Mom’s fuzzy head, kissed her cheek, and I came home.

I never expected to have that memory with me. I’m glad I was able to help her feel more comfortable by shaving her hair, but I don’t know how to cut hair. I do a terrible job trimming the dogs–even though I do it when it’s needed so they don’t have to sit in a cage at the groomers waiting to get trimmed–so I wasn’t looking forward to cutting Mom’s hair. I did it because she needed it, but I hated doing it. I hated that it needed to be done. I hated it.

I walked home in the lightly falling snow. We’re expecting an actual “official” blizzard here (it’s going to meet real criteria for a blizzard, they’re not just saying it’s a blizzard…who knew?). 20-30″ of snow when all is said and done. It was that eerie quiet outside as I walked home. I let my mind stay blank and felt the snow touch my face, wet my hair, linger on the scarf I was wearing that my grandmother crocheted for me a million years ago. Inside my house, I took off my coat and hung it on the back of chair, then went to throw something away in the trashcan in our mudroom. The can has this latch thingy that requires you push the lid down to latch and unlatch. I pushed it to unlatch it, threw out the paper in my hand, then pushed it to latch it again. Only there was a towel on top of it (that we use to dry the dogs from the snow) that got caught under the lid. So I yanked on the towel while simultaneously trying to push the lid down to release the latch again. It didn’t work, and I swear I stood there and pounded my fist on the lid repeatedly as I yanked on the towel. BANG BANG BANG BANG. Hard. Loud enough that Hub stuck his head in the doorway to see what was going on. I finally got the lid to pop open, pulled the towel out and closed the lid again. I shrugged at Hub and said, “Guess I had some rage to get out.”

Poor guy did the right thing and scurried away without comment.

Last night when Mom texted me (she’s getting into this texting thing now that she has a stylus…she’s texting her grandkids and my non-local brother) “Alarm! Hair is falling out! Just thought you’d want to know.” she also told me she was eating some store-bought ice cream leftover from a recent visit from my nieces. So after the rage incident, I mixed up her favorite ice cream–chocolate peanut butter–and dumped it into the ice cream machine to churn. When it was done, I put it into a blue freezer container, then called Mom to say I was coming over and I was bringing the snow with me. She said, “Only if it’s chocolate covered snow.” The steroids have really cranked up her appetite for everything, including her beloved chocolate. She’s eating a lot of food now, and we make it into a joke…that no one should stand still too long in her house or they might get chewed on. So I suited up in my coat and scarf, and walked back to her house to deliver the freshly made ice cream. Again, the quietness of the snow, the gentle touch of the icy flakes, it was all so serene and so…engulfing is the only word I can come up with. I’m not sure how it really made me feel, it just was so noticeable.

I showed Mom the container of ice cream and promised that by her snack time later that evening it would be firm enough to eat, then I stuffed it into her freezer. She told me she talked to her good friend on the phone, she talked to my brother who lives in another state, and she thanked me again for cutting her hair. I told her I loved her. I told her to text me later to say good night. And I was outside for the walk home. Crunch crunch crunch. The snow was sticking the ground by now–maybe two or three inches-and I tried to duck-walk my way back home, following my footsteps only now I was leaving prints that were backward to the original. I know it sounds confusing, but at the time it seemed important to make those marks in the snow in just the right way.

When I got home, I realized how tired I was. I realized how much my body hurt. I cleaned up the stuff from the ice cream machine (it cleans easier if you do it right away) and got myself a big glass of water. I sat down and nearly couldn’t get back up when it was time for dinner.

If it really does snow as much as they say, I won’t be able to get over to Mom’s tomorrow. That’s why I ran back over tonight with the ice cream, so she had it for the weekend. If it really does snow as much as they say, I’ll have nothing to concentrate on. Mom’s doing well enough that they don’t need me over there if Dad and my brother are there (my brother lives with them). I don’t have to worry about figuring out how to get over there in 2+ feet of snow. I can stay home and do my best not to think.

Maybe I’ll be able to get outside with the dogs. I might not be able to get off the deck as my knees are really unhappy and walking through the snow in the back yard would be too painful. But maybe I’ll get some pictures. Maybe I’ll see the dogs romp. Maybe I’ll be okay.

 

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