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Category Archives: obsession

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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Liar liar brain on fire

I’ve been struggling with my health anxiety for over a week. As per usual, it’s pretty centered around my heart. I’ve made an appointment to see my cardiologist, but the online scheduler only had an appointment for NEXT Monday. I’m going to call in the morning to see if they have anything sooner, whether it’s a cancellation or what. If they can’t fit me in sooner, I might also check with my regular doctor–but getting in to see them is pretty difficult these days.

I keep trying to tell myself that if I’m still alive after this week of potential heart pain, then it’s likely just anxiety plaguing me and not a “real” issue. It’s my anxiety lying to me. My left arm hurts, my back hurts, my jaw hurts, I feel slightly off-balance, I’m nauseated. All those things could mean a heart issue…and all those things could be just my daily life. I can’t get around my lying anxiety brain to figure it out. I’m both hot and cold, sometimes feeling sweaty when there’s no sweat there. Right now my palms are warm and feel like they’re sticking to my laptop, but my feet are freezing cold and clammy.

I’ve had a pain in my lower right back today. I always have pain in my back, but this feels different. Is it real or anxiety? I hate that I can’t tell. I don’t understand how I’m supposed to know what is real and what isn’t. I don’t know when to seek emergency treatment and when not to. I don’t want to spend my life in the emergency waiting room…our local ER is terrible and our trips tend to last no less than 6-12 hours there. Most of that in the waiting room trying to get a bed to be seen (usually by a dismissive physician or physician’s assistant).

I’ve been depressed and not acting normal, not moving around much, not eating well, not drinking my water. I know this is all contributing to the fact that everything hurts me, but I can’t seem to get around it. I’m sitting poorly, also contributing to my pain. I’m not sleeping, some of which from pain, some because of the fear of having a heart attack.

I can’t even tell you how many good-bye letters I’ve written. In my previous house, I used to have them scattered around in weird places. Mostly hand-written in the dark of night when I was sure I wouldn’t make it through the night. Sometimes I write them on my computer and drop them into weird folders. Am I the only one? Does anyone else do this? I so wanted to write one the other night because it was that bad. I didn’t do it. I wanted to wake Hub and tell him good-bye, just in case. I wanted to do it before he went to sleep. I write the notes because I don’t want to frighten my wonderful husband…I can’t stand keeping him awake when he’s the one getting up early every morning to take care of the dogs and then go to work to support both of us.

I was sitting here earlier, just waiting for the time to go by. And I started wondering WHY I was hoping for the time to go by more quickly. I know I want to get up first thing and make calls to the doctor, but really, what is that going to solve? I’m not likely to get an appointment right away, so I’m still stuck in this anxiety limbo.

As I type, I’m restless. My jaw is hurting again. My back. My arm. I want to sob, but crying only makes me feel worse. I want to curl into a ball, but it hurts too much. I want to lie down and go to sleep but I’m afraid. I heard once that there are more heart attacks in the early morning hours, so I’m afraid to go to sleep because I’m afraid to have a heart attack overnight or in the early morning hours. For some reason my brain thinks that if I’m awake, I won’t have a heart attack. Or maybe I think if I’m awake, I’ll be able to get help if I start having a heart attack. Probably the latter.

This sucks so much. I hate this health anxiety. I hate that this is one of the few things that I’ve not been able to conquer. Sometimes I do so well, but other times I’m just so suffocated by it.

 

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Surgical consult conclusion

I had my surgical consult. I’m sort of feeling odd about the whole ordeal, because in effect, it was not much of an ordeal.

We waited over half an hour for my appointment. They had signs all over the office saying, “We apologize for the delay, but we are giving our patients our utmost attention. When you are in your appointment with us, you will appreciate that we are doing the same for you.” I was actually doing pretty well this morning before the appointment, and even on the way (which took over an hour because of traffic and Hub missed a turn that required us to squirrel around to get back to the right street). I didn’t feel jittery or anxious. While we were waiting in the doctor’s waiting room, I also felt okay. The place was mobbed…I’ve never seen a doctor’s office like that before. Later we heard there were four doctors seeing patients that day, so I guess that’s why there were so many people. Plus, almost no one came alone, so for every one patient there was a second person with them.

We were finally called in to an exam room and I got the interview with the nurse. My BP wasn’t horrible, but it wasn’t normal either. I’ve seen worse for damn sure, so I was okay with it. The nurse asked a couple of questions, then told me to undress from the waist down and wait for the doctor. It was probably another ten minutes before the doctor came in.

We met this doctor before and I knew what he looked like and what his mannerisms were. I like him a lot because his bedside manner is very mellow and when he asks you a question, he seems to really listen to the answer. If I were to try to give you an image for the doctor, it would be this:

Dr Surgeon

Dr Surgeon

The funny thing is, he’s really really tall, but he kind of has this long, droopy face. I totally told Hub afterward “he’s Droopy the Dog, isn’t he?” and Hub laughed and agreed.

Anyway, what was odd was that after I explained why I was there and why I wanted the hysterectomy, there was no conversation about other options. He didn’t try to talk me out of it or suggest waiting any further. I told him about my mother’s history and about how I had gone the conservative route two years prior after consulting with him. But that it was time to get the surgery because I didn’t want this getting any more advanced–either in size or in potential cancer. After a brief exam, during which he noted that we really were talking about big uterus and fibroids, he began talking about being able to do the surgery laproscopically. I was actually rather surprised considering the size of the uterus and large fibroid (I have 2 fibroids, one as big as the enlarged uterus and one smaller), so I said as much. He indicated that it wasn’t about the size so much as how available they were and if the uterus was “mobile” enough to be removed. He said there’s always a chance to have to convert to an abdominal incision, but most of the time that they start laproscopically, they are able to finish it that way. He said conversion rates are really really low. So that’s good, because recovery is more like 2-4 weeks for a laproscipc surgery and 6-8 weeks for an abdominal. And when I went to schedule the surgery (yep, I did it before I even left his offices), the scheduler said that I might not even have to stay in the hospital overnight, depending on what time the surgery starts. Whoa.

Anyway, after my asking a couple of questions (like how do they make sure there’s no possible spread of any microscopic cancers if there might be something hiding somewhere–they bag the organs INSIDE the body before removing them through the tiny incisions…so weird!), I asked if Hub had Qs. He asked something (I don’t remember what it was) and then we were on our way down the hall to the scheduler’s office. When we sat down, she wanted to know what our preference was for a surgery date, and I said “not next week” as a joke. So she said, “Okay how about the week after.” I sort of swallowed and squeaked, “Okay.” She wanted to know if we preferred to wait until after Memorial Day, but we don’t travel on holidays, so I said it didn’t matter.

So, I’m scheduled for two weeks. When we were done and on our way out, I asked Hub if he felt okay about all this. I told him I felt sort of numb, and I felt like I didn’t ask enough questions of the doctor or spend enough time. I mean, I did my research so I knew my options and I knew what the different surgery options were. I knew I wanted the hysterectomy, so I wasn’t looking for other options. I knew I wanted this doctor to do the surgery, and since he said YES to laprcoscopy, I was all good. So why did I feel the need to spend more time in the doctor’s office? Why did I feel like I was missing something? Hub had no answers. He felt like we got the information we needed and did what we went to do.

I came home and told my mother about the date. I emailed my brother to see if he’d come to the hospital to sit with Hub during surgery, since I don’t want my mother doing that and I don’t want Hub sitting alone. I looked up on the HysterSisters website as to what to bring with me to the hospital and how to prepare for after surgery. I got all the paperwork for my pre-op appointment with my primary (they don’t have any appointments for me so they have to talk to the doctors and see how they can fit me in), I got my pre-op bowel clean-out (fun times) instructions and I got my pre-op instructions. I won’t know what time my surgery is until the day before (WTF), and I won’t know if I have to stay overnight until after surgery.

I’m not obsessing over researching stuff on the internet. I’m trying to be INFORMED with enough information but not over-inundated to the point where I’m freaking out. Somewhere in here, in me, is some kind of emotion…but still I feel numb. So much so fast, even though I wanted it over with. And to some extent I’m GLAD it’s going to be over fast because I won’t have a ton of time to obsess and freak out. We’re doing mother’s day brunch here for 14 people, so this week is going to be cleaning and cooking. Next week I hope to be prepping my house and my household for post-surgery…and getting myself gathered to be in the hospital.

I feel it, though. The fear. The thoughts that I need to do a living will. The thoughts that I need to write my husband a letter saying all the things I would want him to know if I die. The thoughts that I want to leave notes for my parents and brothers and my long-time friend (whom I see very infrequently). The thoughts that there are things I want to do before the surgery because I might never be able to do them. The thoughts of how my loved ones will be without me. Who will take care of my parents. Who will love my husband. Who will take care of my dogs. It’s there, deep down below the surface, waiting to find a crack or crevice to slip through and get me…

 

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Enough already!

These PVCs are ’bout driving me crazy. Like I needed any help. I was fine for most of yesterday, with the flubadubas only coming and going here and there. This afternoon and tonight, they are back full force and I really just don’t want to have to deal with them. I have to go to my massage therapist tomorrow, and I’m not looking forward to going feeling the way I do. It’s too late to cancel (I’d have to pay in full, and it’s not covered by insurance), so I hope these damn things go away. As it is I feel like poop, and having to lay down for an hour while someone works on my trigger points (which is painful) while I’m getting PVCs repeatedly (and coughing, because I can’t seem to help it) is not something I want to do.

I want to WILL them away. I want to WILL my anxiety away. I want to WILL my depressive episodes away.I want to WILL myself to find hope and purpose. I want to WILL away the weight I’ve gained over the last year.

Well, that last one doesn’t count, because I should be able to do that one, I just can’t seem to get a handle on it.

Go away, flubadubas. GO AWAY. Leave me alone. I want to rest, I NEED to rest. I need to not feel that ripple of anxiety every time you do that premature THUMP. I need to not let my health anxiety take over.

I’m tired of this. I’m tired, period.

 

eta – I decided that it’d be a waste of my time and the massage therapist’s time to go to the appointment. I’d be so anxious that I wouldn’t get any benefit from the session. I’ll just have to eat the fee and deal with it.

 

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Attempting to keep grounded

This past week or so, I’ve been dealing with PVCs. Premature ventricular contractions. I was diagnosed over 15 years ago with this issue and told at the time that they were benign. That a lot of women, particularly, get them. It’s like one part of your complete heartbeat comes in too early and therefore the thump-thump is not an even beat. It makes me cough when it happens, probably because it frightens me and I’m trying to control the beats. Which is ridiculous, because there is no controlling it. But no matter what, I still cough. WTF.

Normally, the PVCs are so mild that I don’t notice them anymore. And I know they don’t happen all the time. I think they are more prevalent when I’m already stressed, and I suspect they are also hormone driven. But truthfully, my hormones are pretty messed up…they have been for years. So there are times that I know my hormones are spiking only because of the PVCs. I’ll then notice other hormonal issues, and I’ll be like, “Oh right, hormones.” And I would suspicion that I’m dealing with hormones now because of the outburst of acne on my poor chin. But these PVCs are getting to me. They’re happening A LOT, and they feel very prominent. I remind myself repeatedly that they are BENIGN. The doctor at the time told me that unless the PVCs were consistently running on, they didn’t want to put me on beta-blockers for them. And over the fifteen years, I’ve not had that issue. But over the past couple of days, they’re bugging me. I know it’s because it’s ramping up my anxiety, and I know the anxiety makes the PVCs worse (or at least I notice them more).

I know all that. I KNOW IT. And yet I’m sitting here feeling stressed and anxious because the PVCs are coming more often. I’m trying to crochet and do other things to keep myself busy, but the PVCs still come and I cough and I get anxious. And I desperately want them to go away.

Anyone else have these stupid PVCs? It plays right into my health anxiety, which is almost always centered around heart issues for me. ARG. It’s making me want to lay down and cry. Which won’t help one tiny bit.

(apparently I blogged about this last year… *sigh*)

 

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Finding happy

Had a session with T last week. Of course we talked about my mom and her cancer situation, as well as the situation with my dad and brother. And gently, but firmly, T reminded me that I am not my mother’s sentry. I want to protect her, but really she knows how to protect herself. I have to take a step back and offer her my support without trying to take over. I had already started doing that before my session with T, but she did reinforce that for me.

So among some other conversation, T and I talked about my relationship with food. I told her how I feel traumatized every time I take the digestive enzymes my nutritionist recommended for my heartburn and stomach issues. The enzymes seem to work (this past week not so much, but prior they were working REALLY well), but they remind me so much of all the “herbal” pills I had tried to buy and take growing up to lose weight. There’s a smell to them, and the look of them is not much better. And I can’t help but smell them every time I open the bottle. She suggested I put a cinnamon stick in the bottle and/or to inhale before I open the bottle so I can’t smell them. We talked about being mindful with my food, but truthfully–as I told her–I either think about it too much, or I think about thinking about it. Which sounds weird. So I’m not sure what direction to go, because I don’t want to obsess over food, but I don’t want to eat unmindfully. One of the problems I have is that I have to think about food constantly because of my gluten/wheat issues. I can’t go out anywhere without spending time thinking about where we’re going and will there be food for me and will I get sick afterward and will it be worth it. I can’t go to other people’s houses without thinking about it, or even randomly pick up a chocolate bar in the store. I can’t even randomly pick something out of my pantry or refrigerator without thinking about the ingredients because Hub is not gluten/wheat free. So I have to think about what I eat all the time.

T asked me to think back to a time when I felt like I wasn’t worrying about my weight or my body image. And there was a time, shortly after we moved into our house from the townhouse we first lived in together. I was deep into my writing and felt that I was a part of a larger group…and that I was touching people’s lives. So she asked me how I could get back there, but I told her I wasn’t likely to ever be in “that place” again, because it was years before I realized I had food sensitivities. Back then we didn’t think about or worry about gluten/wheat. I ate what I wanted to, when I wanted to, and in the amount I wanted to. Now I can’t do that with pretty much anything. I eat too much cheese, I get sick. I eat split pea soup, I get a stomach ache. I eat GF pretzels, it makes my stomach hurt. My favorite cheddar cheese potato chips? They leave sores on the inside of my mouth. Pineapple? Burns my lips. Fritos (which I love but actually can’t eat at all anymore) makes my lips burn, too. Spinach upsets my stomach. Chocolate upsets my heartburn. Tomato sauce upsets my heartburn. Popcorn gets stuck in my teeth and gives me toothaches (stupid delicious movie theater popcorn that I haven’t had in about ten years.) I avoid sugar substitutes, so a lot of foods are off limits because I can’t take the sugar substitutes in them. I literally never pick anything up at the grocery store without reading the ingredients and searching for items on my no-no list. I’ll never be able to just eat what I want to eat. I’ll never not have to think about it. And it sucks, because it makes food an obsession of sorts for me, which is one of the last things I need.

And I miss writing. I know that I’m writing here, and I hope that I’m touching people’s lives…but I miss the writing that I loved so much. I miss being buried in those words, in my characters, in the worlds that I created. But I can’t seem to find my way back there. I can’t seem to be in that place anymore. And that hurts me, too, because that was a happy, comforting place to be. It made me feel like I was doing something good, offering something to people, and I felt fulfilled. I want that again, too.

 

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Hair raising appointment

I went to see the nutritionist so I could talk to her about where to go next, as she has been helping me heal my whole system. We were originally working on the heartburn and indigestion and stomach issues that I was having…especially after getting off Prilosec. When you go off one of those types of medication, you get unbelievable rebound symptoms that are basically worse than the original symptoms you had. It was not a pleasant time, but I made it through, and then we started on healing my stomach and digestive system. At this point, I feel that we have at least tackled the heartburn and GERD symptoms…much better than I really was on Prilosec. It leads me to believe that the nutritionist was right, that I didn’t have enough acid in my stomach, rather than too much (doctors always say you have too much stomach acid and then they put you on acid reducing medication, which only makes things worse).

So now that those symptoms have been addressed, I wanted to talk to the nutritionist about my weight gain and my carbohydrate sensitivities. I want to know what I should be focusing on to turn my weight gain around and get some more pressure off my knees. She, of course, sympathized that I’m putting on weight even while I’m upping my exercise and watching my food intake. But the thing is, if I even take so much as a small plate of carbs (like, say, white potatoes), my weight will go up. But if I don’t eat the carbs, I feel like crap and my mental and physical condition goes down. If I eat gelato as a snack (my fave!) in the evening or afternoon, I don’t put weight on. WTH? So she indicated that my system may be overly sensitive to carbs versus sugar. I’m not entirely sure how to handle that issue yet.

What I did get from the nutritionist was the trauma of watching her head toward me with a pair of scissors. Without any salon training, I might add.

We decided that getting a hair analysis might be helpful to put me on the right path. The analysis would not only tell me if I’m missing vitamins and minerals, but also what kind of foods are best for my metabolism. But the sight of watching my nutritionist coming at me with those scissors…yikes! I mean, I knew we would be talking about the hair analysis option, but I pictured her yanking out a couple of strands from the root…from multiple spots on my head so they could have options. Instead, she plucked the scissors from her desk and told me that the lab needs hair that is close to the scalp. And that they need a bunch of it.

Whuh?

So she flipped my hair over (it’s a bit below shoulder length at the moment) and started hacking at my hair. She came up with a clump of it and put it onto a little paper scale thing, and then announced that it wasn’t enough! So she went back again to the same area! and hacked again. Unnnngh… To add insult to injury, she ended up snipping off the ends of the hair and only giving them the clump that came from the closest part of my scalp because they don’t use the “dead ends” part. Now I have these short fuzzy areas under my hair that are just making me nuts. Hub says you can’t tell from looking at the back of my head, but I can feel them. I just wish she had taken the two clumps from separate areas so that it wasn’t such a large area of semi-short-baldness.

When I go back to get my hair cut, the hairdresser is probably going to ask me WTH happened. I mean, you can’t miss the difference in length.

So the nutritionist said 2-3 weeks before we get the analysis back. We’ll see what happens. Stay tuned!

Also, SNOW AGAIN!

Note dog snout print in the snow on the bench

Note dog snout print in the snow on the bench

March Snow Trees

 

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