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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

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Don’t pigeon-hole me

I had a very very bad night last night. Even before I was ready to go to sleep, I was feeling uncomfortable. My hands and arms were tingling, or feeling like they were going to be tingling, and no amount of moving them or rubbing them or moving around made it better. Hub went off to sleep, with an early morning alarm to go to an on-site meeting that required a two hour commute (each way). I sat up for a while because my right elbow started hurting. Then my left inner arm starting hurting. The tingling was still going on in both hands. I was so unhappy. I couldn’t lie down and get comfortable, so I kept sitting up in the dark (I had turned the TV off by about midnight in the hopes that I could go to sleep). I was rubbing my hands and bending my elbow repeatedly.

And I did the worst thing I could do. I thought I remembered that pain in your elbow was a symptom of a heart attack, so I looked it up. And it was…and I knew immediately I’d made a mistake by confirming that, and I turned my phone off immediately. I tried again to go to sleep but now both arms were hurting, the elbow, all the tingling, and my body was getting weary from sitting up for so long. I hadn’t slept a wink.

At one-thirty a.m., I had a panic attack in my pitch black bedroom, with my husband snoring beside me. This panic attack in particular consisted of violent trembling of all my limbs. I knew what it was and I let it come because I had hoped it would tire me out and let me give in to sleep. Instead, all the symptoms I’d had before the attack were still there…and I still couldn’t get comfortable enough to sleep. So I sat up for another hour or so and ended up with a second panic attack. Same violent trembling and fear, with all my pain symptoms still hanging on afterward.

So I woke Hub up and told him I needed to call an ambulance, because I was feeling really poorly, I felt short of breath at that point, and all my other symptoms remained. While he got dressed and went to the bathroom, I pulled on some clothes and tried to get downstairs to wait for him. He called 911, requested the ambulance, then called my father so he could take care of our dogs. It was about three thirty in the morning.

I wish I could say the EMTs were kind and compassionate when they arrived, but they weren’t. The lead guy started asking me what was going on, and I told him. He immediately asked me if I had any history of anxiety…which I said I did, but that it was well-controlled most of the time. And that my symptoms had all come about prior to any feelings of anxiety. He told me to follow him to the ambulance–Hub helped me out through the garage while the EMT just walked off–and told me to get in through the side door (again, Hub helped me up the steep steps). Inside the ambulance, the EMT hooked me up to the blood pressure cuff and oxygen finger thingy, then started asking me questions again. He kept telling me that my tingling and pain could be from anxiety, and I kept telling him the tingling and pain were PRIOR to me feeling anxiety. My vitals were pretty high, so he directed me to work on my labored breathing while he filled out some chart and told me he and his partner didn’t usually work our local area. As my vitals came down a little, he announced that maybe I wanted to just go back in the house and let them go back to the station. “We’re not in the habit of kidnapping people and taking them to the hospital if they don’t want to go…”

I just stared at him. I was giving him information on “bilateral” arm pain, shortness of breath, tingling in both arms and hands…and he was telling me to go back to my house. I told him in no uncertain terms that I was very familiar with my anxiety and that this wasn’t anxiety…and that I wanted to go to the ER to find out what was going on. He kind of sighed and said, “okay, but you need to keep working on your breathing and anxiety so once the doctor sees you, they can evaluate you without the anxiety in the way.” Then during the ride to the ER, he asked me, “how many times have you done this? gone to the ER in the ambulance?” I said, “this is the first time.” All he said was, “Oh.”

WTF.

At the ER triage, he told the nurse FIRST that I had a history of anxiety. During his recitation of my history and presenting pain, he told her at least two more times that I had a “previous history of anxiety”. They took me to a room and told me to scoot from their gurney to the hospital room bed, then said, “the nurse will see you at some point.” and they left.

Hub FINALLY found me a few minutes later, without any assistance from any of the nurses or the EMTs, who were all standing around chatting at the nurses’ desk. We sat in the room and waited for about half an hour (or 45 minutes?) before the nurse and PA came in to see me at the same time. The PA started asking me questions about how I was feeling, then looked at the computer and said, “You have anxiety issues?” I said yes, but that this was not the anxiety, that I have been managing my anxiety extremely well for quite some time–the PA looked at Hub as if she was expecting him to argue with me, but he confirmed what I was saying. So the PA said, “why don’t you let us get you started on some fluids and some anxiety medication?” I said, “no, I don’t take medication for my anxiety. I manage it without medication.” The PA looked dumbfounded, and wanted to know what she was supposed to do. I told her that I was afraid the pain was symptomatic of a heart attack, and I wanted her to check to see if that’s what was going on…or if it was something else and WHAT the something else might be. The PA asked again about giving me anxiety meds, or something for the pain in my arms. I said I didn’t want pain meds (which she told me would be anxiety medication anyway), that I had anxiety medication at home but that I didn’t take it. Again, I got a look from the PA that said she was sure I had lost my mind.

At this point, the nurse stepped in and said, “oh, I do the same thing. I carry my klonipin with me all the time, but I haven’t used it in years.” The PA looked both confused and annoyed at that point.

The PA said, “I can do a whole work-up, but your history says you had an EKG in June with a stress test and that’s the GOLD STANDARD. So if it was clean, you really don’t need to do anything here.”

I told her I wanted to know what was going on, what the pain was and why was I feeling really poorly. So she said she’d order the EKG, bloodwork, heart enzymes, and a chest and neck xray to see if there was anything going on there. She left the room, and seriously? That was the last time I saw her. We were there for another two and a half hours and she never came back into the room. Neither did a doctor. The nurse took care of us, did the EKG and told Hub about thirty minutes later that an attending said it was normal. She did the blood draw and then told us about an hour later that the results were all clean. She took me to get the xray (because their orderly was MIA) and she was the one who came back to say the xray was fine and I could go home. In the time we were there, she was in and out of our room a lot, talking with us about her history of anxiety, and how people who had never dealt with it didn’t understand. That she knew what I was saying, and how I was feeling about the meds, and how she understood that I was identifying pain not associated with my anxiety.

I felt so demoralized by the EMTs, the PA, and the other staff there (not including the good nurse). I am very open and honest about my anxiety. I feel it’s important for medical personnel to know my history in full, which includes my anxiety. I’m so disappointed that doing so in this instance gave the EMTs and the PA the reasoning (in their minds) to shove me aside, to not take me seriously, and to abandon my care.

We were released from the hospital and got home around six forty-five in the morning. Hub had to bow out of his meetings, he retrieved the dogs from my father’s house, and we both went back to bed. I slept for about two hours, then dozed fitfully for a little while after that. When I woke up and went downstairs to have some lunch, I found that I still had all the same symptoms as the night before. The tingling comes and goes–and is in my legs and feet and sometimes in my face–my back is hurting, I’ve had a headache on and off. I don’t know what’s going on.

Hub reminded me today that fall is usually when I get a pretty bad flare of my myofascial pain syndrome. So is that what this is? The pain is in different places and the tingling is new. Of course I know that my MPS symptoms have changed over the 15 years I’ve had it, but this all feels different. I don’t know why I feel that way, but I do.

Even so, I have no idea what to do now except push through and try to keep my anxiety in check. I am scheduled to go in to see my massage therapist tomorrow to try to get some trigger point work in, with the hopes that it will relieve some of the pain if it is in fact related to my MPS.

The panic attacks don’t feel like a huge setback (a small one, yes), mostly because I knew what was going on and I actually welcomed them with the hopes that just going through it would give me relief on the other side. Almost like if I gave it permission to happen, then I was okay with it happening.

Now…I’m tired. I hope I will sleep. Hub is working from home tomorrow for most of the day, I have the massage therapist, then I’ll be alone for a bit while Hub is visiting a client. Well, the dogs will be with  me and my father is nearby, but I’ll have to take care of the dogs and feed them and stuff on my own. Hopefully I’ll feel up to it.

 

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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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Good news, bad news

Which did ya want first?

Remember how I said that G-d didn’t want me to exercise? I’m pretty sure that was reiterated to me Tuesday night. How? Well, thanks for asking.

I decided that since I had trouble with the bike, and I was feeling somewhat better after a weekend of rest and antibiotics, that I would try the treadmill instead. I was going to start off easy, like with the bike, and just get on and go for a few minutes. As I’m walking, I feel my plantar faciitis flaring up but I try to ignore it. I knew it would be an issue. My knees, too, but I keep going for just the few minutes I wanted to accomplish. When I’m done, I’m a good girl and I go right into the shower to clean up and I climb into bed for my evening. About twenty minutes later, I’m sitting up in bed with my legs stretched out in front of me. I twist hard and far to the left with just my upper body, bend at the stomach, and reach for the outside of my ankle where it feels like something is biting me. I can’t find anything, so I start to straighten and zzzzzowie!

My stomach to the left of my belly button twists viciously, making it feel like my innards are being grabbed and twisted hard in opposite direction from my outer flesh. It’s, like, the worst pain I think I’ve had in recent (all?) memory. It feels like my stomach or my intestines or something got yanked and twisted around. And it scares the crap out of me. I get out of bed and try to stand, but I can hardly breathe I’m so terrified. And then it’s over in less than two minutes. And I’m standing next to the bed and I don’t know what to do. I know Hub is downstairs, but he’s busy recording a podcast for at least another twenty minutes. So I try to get back into bed carefully and I wait for him to alert me that he’s done. When he does, I ask him immediately to come upstairs and I try to explain what happened.

He looks mildly alarmed (and upset that I didn’t call him right away) and asks me if I want to go to the hospital or what. It’s now after eight p.m. and I know the ER is going to suck, as it always does. Hub suggests the walk-in clinic, which is close to the hospital, so if they can’t help me it’s a short ride to the ER. I call my dad and tell him Hub is going to bring the dogs over in case we get stuck out for hours at the clinic or ER. I don’t really like leaving the dogs over there now that Mom is gone, because Butthead eats stuff in their yard and then pukes it up (either there or here) since her stomach is so sensitive. No matter how many times I tell my dad and brother about it, they don’t seem to take us seriously. Anyway, I get dressed, then meet Hub downstairs and we go out to the car.

The walk-in clinic is not too busy and they basically take me back in about five minutes after checking in. The medical assistant asks what’s going on, then says something to the effect of, “Gee, I hope your intestines didn’t get all twisted up, because that can happen!” in a kind of chipper voice. I wanted to punch him in the throat. Hub says, “Uh, hey, guy, she kind of has anxiety issues, so let’s not just throw random theories out there if you don’t mind.” The medical assistant nodded and smiled, then left the room. From there, despite the lack of patients, it takes over an hour for the doctor to come in to see us. She asks for bloodwork, pee, and an xray. Says she doesn’t know what it is. It doesn’t feel like anything is twisted when she does a physical exam.

I take care of the pee, the phlebotomist comes in to take my blood (Hub leaves the room, ha!), then we sit and wait (me in a gown and my underwear!) to be taken for an xray. The staff seems pretty nice, but slow-as-molasses. It’s already after 10pm, which is their closing time, and we’re basically still waiting for xray. They finally take me in, do the xrays, and we’re back in the exam room while the staff is cleaning and closing up around us. FINALLY the doctor comes in and announces “KIDNEY STONE!”

What-the-ever-loving-fuck?

So she tells me it’s going to be excruciating pain passing a stone, but that it’s already in my ureter and down partway, smallish in size, and hey, it might pass without any pain, but not likely. So you want vicodin or what? I say, in a small voice, I can’t do vicodin as it makes me nauseated and dizzy. She offers me tylenol with codeine instead and I take it. I ask how long to pass the stone and she says “Oh it’ll be gone by morning. Drink a lot…a LOT of water and be prepared to take the pain killers. Seriously, keep them right next to your bed and be ready to pop them.” We wait around another twenty minutes for xray films on cd, which I’m supposed to take to the urologist as soon as possible. We finally leave and get home, and Hub goes to retrieve the dogs. I shuffle to bed and spend the next three hours pounding down bottles of water as fast as I can, hoping to push the stone through. I also go looking for information on kidney stones (I know, it was dumb) and find that those who get stones (“stoners”) will likely continue to get them for the rest of their lives. Of course, my father informs me he had one once, but only one. So maybe I’ll be lucky like that. Or not. Who the hell knows.

I stay up until after 2am, peeing into a strainer they gave me trying to catch the stone so the doctor can have it analyzed and see how to change my diet to not get any more. Peeing into a strainer is awkward, ya’ll. And uncomfortable. And all the while I’m just WAITING for the excruciating pain. It’s coming at some point, and I am terrified. People say it’s the worst pain they’ve ever felt. Worse than labor without pain medication. Brings big strong men to their knees wailing like children. I put the trashcan right next to my bedside because vomiting is highly likely they say. I take off my necklace that I wear all the time so it doesn’t get in the way if I have to bend over to vomit into the can. I leave my hair tied back for the same reason. At about 2:30am, I give up and try to sleep, but lying down makes me feel nauseated (another symptom of stones!), so I prop myself upright and doze off.

At eight a.m. I wake up and call the urology office to make an appointment. They can’t see me until Thursday afternoon (it’s now Wednesday 8am). I ask the person on the phone what to do until then. She says “did they give you medication?” and I said just the pain pills. She asked about the strainer, I said yes. So she says she’ll see us Thursday. Uh, okay, thanks. I spend the entire day in bed, exhausted from the fear and the anxiety and the kidney stone. On and off I’m sure I feel the radiating “flank” pain they were talking about, but it’s mild. My back aches (another symptom!) but it, too, isn’t much worse than normal for me. Hub is taking care of me, making sure I’m still drinking a lot, and making sure I try to eat something. He’s working from home and spends most of the day in the bedroom on his work laptop so I’m not alone.

Still no hellish pain, so I go to sleep sitting up again Wednesday night, but middle of the night I toss the pillows and lie down. I sleep until Hub wakes me to say good bye…he has to be in the office for a few hours before my appointment. I spend most of the morning reading kidney stone stories on reddit, still waiting for the other shoe to drop (the horrendous pain) and wondering why the hell the stone hasn’t passed into my strainer and why I’m not having to pop pain pills like everyone else.

FINALLY we go to the doctor. They make me fill out stuff on a computer thingy even though I filled everything out online at home the night before. They give me a cup and I go pee, for the first time in over 40 hours, I’m not peeing through a strainer. Yay. Then back into the waiting room, where we sat for over 40 minutes until the nurse calls me back. She’s nice, we joke a little, she asks what we’re in for. When I say kidney stone, she cringes and says, “Ugh.” But tells me the doctor will be in shortly, then leaves my xray up on the computer screen for the doctor to see.

Luckily, the doctor comes in shortly thereafter and we go over why I’m there and how I was diagnosed. Then she sits at the computer and looks at the screen and frowns. Then makes a face. She asks again what happened to lead me to the walk-in clinic. She asks again about pain, nausea, backaches, fever, vomiting…none of which I really had in any major way, except for the initial “short” incident. Then she says… “it’s not a stone.”

WHAT??

She says, “Clinically speaking, if you had a stone in your ureter like they thought you did, you’d be on the floor crying and in pain.” And that I’d have been in pain the whole time, basically, even though it might have come and gone in waves. She tells me the spot is a calcification in a pelvic vein called PHLEBOLITHS. I ask her to please repeat that and she does (I still don’t get it but I look it up when I get home…of course), then she says it’s benign, nothing to be concerned about, comes with aging.

What is the meaning of PHLEBOLITHS are noted in pelvis?
A phlebolith is a small local, usually rounded, calcification within a vein. These are very common in the veins of the lower part of the pelvis, and they are generally of no clinical importance. When located in the pelvis they are sometimes difficult to differentiate from kidney stones in the ureters on X-ray.

Good news, no kidney stone. Bad news, I just spent the last 48 hours freaking out over nothing. Oh. My. Gawd.

We still don’t know what the initial pain was from. It was terrifying. She says she wants to get a ct scan to make sure nothing else is going on, just out of an abundance of caution. I tell her I have to get a ct scan for my 1 year post-cancer check next month, and can I combine the two so I don’t have to do two separate scans. She says “sure” and says to check with my gyn oncologist to get what he needs. She prints my referral for the scan and walks me out. She tells me to come back if I start feeling poorly, otherwise she’ll wait to see the scans.

It’s possible the horrifying pain was from a muscle cramp (in a weird fucking place), but I’ve NEVER felt anything like that before in my life. I just don’t know, and won’t know if anything else is going on until after the scan. I’m waiting to hear from my gyn oncologist to see if I can go ahead with the scan now, instead of waiting for the appointment next month.

Stupid treadmill.

 

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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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Control and choice

My mom was diagnosed with uterine cancer. She is 73 years old. Her experiences with doctors and tests and surgeries and anesthesiologists and diagnostics are limited. She dealt with some of this with my grandfather when he got cancer, and then some when my grandmother became ill. She dealt with it when I got sick, too. But always as an outsider, as the support system. Now, it’s a first-person experience for her, and she hates it. I can’t blame her, I know how it sucks…to a point, of course. I know the on-going tests, the waiting, the appointments, the waiting, the doctor’s offices, the waiting, the results. The questions, the lack of answers, the run-around. The lack of information.

Mom told my brothers what was going on a couple of hours after she told me, mostly because they all work and she didn’t want to call them while they were at work. I’ve since spoken to one of my brothers, who is really the one who questions everything. The one who challenges everything. The other two have not spoken to me yet, but I’m sure we’ll talk at some point. But the one brother, he’s already asking questions, challenging things, doing research. And I’m not.

I’ve asked my mother questions, but when she answers them I accept what she says. I don’t challenge her, I don’t challenge her doctor. And I am not doing research. I feel like I’m doing something wrong by not doing research. Every hour I try to remind myself that I’m not a doctor and I’m not G-d. I cannot affect the outcome of this situation, I can only try to affect the journey. I can support, I can listen, I can do the laundry and cook dinner, I can grocery shop, I can drive to appointments and/or go with them to appointments. I can pick up medications, I can help clean, I can take care of Cray-cray Lab. I cannot affect the cancer, I cannot affect the surgery, I cannot affect the doctors and how they perform. I can pray, I can hope, I can do the things I can do. I can make the choice to be in the current space with myself (and/or my mother), and not spend that amount of time wondering, researching, worrying, being anxious, feigning control.

I am in the moment. And the moments feel helpless. I feel helpless. The other things I am not doing–the illusion of control–at least made me feel like I was doing something. This not doing, it’s hard. This accepting that I cannot affect change in the cancer, it’s hard. And it hurts to accept that I cannot affect change in the cancer for my mom. This is not to say I am not able to help (see above) in other ways, but I want to do more.

My mother is a woman of faith. A woman of no regrets. A woman of strength. In the good days, in the bad days. It’s easy to have faith, no regrets, and strength in the good days. It is the measure of a person to have that same faith, lack of regret, and strength in the bad days. I choose to follow in her footsteps as best I can. I am awed by her every day.

I choose to be in these moments of helplessness. I choose to be in these moments of fear. I choose to be in these moments of faith. I choose to be in these moments of strength. I choose to be in these moments of no regrets. I choose to be in these moments of love. I choose to be in these moments with my mom. I choose them all now because I may not have these opportunities again.

 

 

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Struggle

I’m struggling hard right now.

You all know my mom has had some health issues recently. About ten days ago, she went in for a test. Today the doctor called her to tell her she has uterine cancer. Even typing that makes me feel sick. I came home from PT around 2pm, and by then I knew she would have had her phone call from the doctor with the test results. I had a bad feeling on and off all morning, but chalked it up to me just looking for something to worry about. But when I got home and I called to see what the results were, she told me it wasn’t good. And then she said the doctor said the pathology said uterine cancer, and they wanted to move forward with a hysterectomy sooner rather than later.

I held up on the phone call, and I assured her I was okay. I assured her that we would be here to take care of her, of my father, of their dog while she is in the hospital. They said they expected her to be in the hospital 3-4 days, barring anything unforeseen. We don’t know yet if they are considering laproscopic surgery, but I assume if they are saying 3-4 days, it won’t be laproscopic. But 3-4 days in the hospital–with my dad at her side and my brother at work most of the day–someone has to take care of Cray-cray Lab (and our dogs). I’ll do it, it’s no question…but it means I won’t be able to be with her at the hospital, too, while she’s recovering. Hub has already said he’ll take the day off of her surgery to watch all 3 dogs while I’m with my dad at the hospital. My uncle (her brother) and my aunt will likely be there with us, too. And when she comes home, I’ll be here to help them, too. It’s why we live so close…for which I continue to be eternally grateful.

One part of my brain is settled…yes, we’ll handle this. Yes, I’ll be there for my dad during the surgery…yes, I’ll be there to help Mom with what she needs. One part of my brain is … whirring. Like someone gave it a gallon of Red Bull. And I feel like a junky with regards to Google. I want so much to go search everything. Uterine cancer. The surgery. The recovery. Will there be chemo? Radiation? What’s the success rate and the is this the kind of cancer that spreads? What is the long-term prognosis? What about the doctor? Is he good? The surgeon he coordinates with for this kind of surgery? What’s his deal? The hospital? What about heredity? Is uterine cancer hereditary like they say breast cancer is? My fingers itch. My brain itches.

After my mother called to tell me and I assured her I was okay, I hung up the phone and cried. I cried because I’m afraid of what if… Because this is my mom. Because I can’t do anything. Because I don’t know what to do first. I kept reminding myself to be in the moment, what is happening right now that needs to be dealt with. I changed my clothes, I ate a snack, I tried to trim Le Moo’s paws (did front two, then she ran off and wouldn’t let me do the back paws), I went outside and cleaned up poop. Then Hub got home and he hugged me. And since then he’s been working on stuff for his office and I’ve been itching. Avoiding my laptop because I was afraid that the minute I touched it, I would go Google.

I’m touching the laptop and I’m not Googling. But the urge is so bad… It won’t help me; I know it won’t help me. It will make this worse. And as I consider the “what if” game, the thought of taking that to it’s worst end is almost horrifying to me. I don’t want to play that. I don’t want to talk to my brothers when they find out (and call me to talk). I want to be calm. I want to be strong. I will find ways to do those things for my Mom and Dad. But here in the now, I am so afraid.

I feel rambling and out of it. I’m really writing this for me, for my record of what is happening in my life. I’m not Googling. I’m not going to. Googling things won’t change the outcome of what is going to be….because it will be what it will be. And right now, I need to be in my right brain to help where I can, with what I can. Which means supporting my parents and taking care of the home front. Those things I CAN do. I can’t change the outcome of the surgery or the cancer.

I still feel sick and afraid. And I’m sad. And I want people to understand that “sad” does not mean “clinically depressed.” I want my family to understand that I can be afraid and sad in this kind of situation…but that it’s not panic, anxiety, or depression. If ever there was a situation for sad and afraid (and even a little panic), it would be this one.

4/21/2014

 

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