An eventful Monday

I'm sure you all were wondering why I didn't post an update with my endoscopy results since I was supposed to be seeing that doctor for the follow-up visit on Monday June 19. As it happened, I didn't see the gastroenterologist that day because I needed to see my optometrist.

A couple of weeks ago, tree-like floaters suddenly appeared in my right eye. The tree structure collapsed and became much smaller over the course of the day and then disappeared. Since I had no other visual disturbances I figured that my eyes were ok. Then last Friday, a new (and rather annoying) floater that looked like a string curved into a partial circle appeared in my right eye. Later that evening I briefly saw some arcs of light in that eye when I moved my eyes around.

Since my vision was otherwise unaffected (there were no shadows, blurring, or decreasing vision in any way), there was only the one floater and not a bunch of them and it didn't block my vision (even if it was crazy annoying), and the arcs of light were connected to moving my eyes and they stopped, I didn't think I needed to go to an emergency room but would call my optometrist on Monday. Had any of those other things been going on  - or if any of them had started - I would have seen someone immediately because they're symptoms of retinal detachment.

I did call my optometrist's office on Monday morning and they squeezed me in to see the other optometrist in the office. I said I was supposed to go to another appointment and they told me that if I didn't go into their office that I needed to see my family doctor today and get a referral to an ophthalmologist today. I ended up rescheduling my gastroenterologist appointment for August 3 and going in to see the optometrist.

There, my pupils were dilated and my retinas examined. The big concern, and the reason they wanted me examined right away, was the possibility that my retina was detaching. Fortunately, that's not what is happening. Instead, I have posterior vitreous detachment, or PVD, which happens when the jelly-like fluid in the eye (the vitreous) detaches from the retina. It's normal and happens in older eyes. The big risk is that it could make the retina detach, too, so if I see a sudden increase in the number of floaters or any kind of shadow over my vision, I'm to see the optometrist or go to the emergency room immediately. Otherwise I'll see the optometrist in August for a follow-up.

Was I foolish to not head to the ER right away? Maybe. But I was fairly certain that I wasn't experiencing a retinal detachment as those symptoms are very well known and I didn't have them. I wouldn't have waited longer than a couple of days before seeing someone but I figured that waiting the extra days (in the absence of any new symptoms) would be all right.

And as it happens, I got the endoscopy results from my oncologist when I saw her on June 9. I didn't talk about those results as well because the gastroenterologist will need to interpret the results. Since I won't see him for another six weeks, I can tell you that the endoscopy showed....

Nothing. There's no ulcer. There's no damage. Te biopsies were normal. I am not gluten-intolerant. I do not have an H. pylori infection.

There's nothing wrong at all with my stomach. Why does it hurt sometimes? I have no idea. Maybe it's all in my head?

That was the endoscopy

This afternoon I had the endoscopy to see what shape my stomach is in. I think it went well.

Ian drove me there and back because I was sedated and I wasn't allowed to drive myself or take a taxi. He took Gozer for a walk while he was waiting for me.

When I got there, I had to wait a bit for them to call me in but once I was called into the back things went quickly. They had me change out of my long-sleeved top into a gown. The nurse came back, asked me a bunch of questions, and put a blood pressure cuff on me.

And then the nurse tried to start an IV for the sedative. For whatever reason she wanted to use my hand, and I hadn't been allowed to eat or drink anything for over four hours before so I was slightly dehydrated, and my veins are pretty crappy as it is. The IV attempt did not go well and I'm going to be left with a giant bruise.

She decided that she wasn't going to try again and that she'd leave my IV for the endoscopy nurse. That nurse did a much better job with the IV: she got it on the first try and it didn't hurt quite so much. Putting an IV into the hand is always going to hurt a little.

Then another nurse confirmed my name and age. The doctor sprayed a banana-flavoured numbing agent on my throat, gave me a thing to protect my teeth, and started injecting the sedative.

And then I woke up. I remember absolutely nothing of the procedure and I'm ok with that.

I have a followup appointment for June 19, I think. I'm not sure... I was pretty woozy when the nurse told me but it's written on a card. I slept for about half of the drive and then for about an hour after I got home. I'm still pretty tired but feeling ok.

Hopefully the doctor will have got some good biopsies and will have some information for me.

Gastroenterologist appointment

Have I mentioned my stomach issues? I don't remember. Apologies if I'm repeating myself.

A bit of background: I have degeneration in my lower back at L4-L5 and L5-S1 which causes pain and the pain was worse after my ovaries came out in 2007. To deal with that pain, I took Celebrex (a non-steroidal anti-inflammatory drug, or NSAID) starting in late 2007. I didn't really take it properly because I didn't always take it with food; taking it with food is strongly recommended because NSAIDs can cause stomach problems. However, my stomach was fine. Then in late 2014 I heard about a new painkiller that would help with headaches (I grind my teeth and get headaches from that even though I wear a night guard). This new amazing painkiller was Naproxen (Aleve) and wow did it work. It worked faster and better than Tylenol and so I took it occasionally.

What I didn't realize is that Naproxen is also an NSAID and, like Celebrex, can cause stomach problems. In the summer of 2015 I started experiencing severe stomach pain almost certainly due to the combination of NSAIDs. The pain was so bad that I couldn't stand up straight and I almost never wanted to eat. I was taken off of the Celebrex and stopped taking the Naproxen... but the damage was definitely done.

My family doctor put me on 60mg of Dexilant per day plus Gaviscon and the combination worked to reduce the stomach pain. I still had occasional problems but I could stand up straight and eat. I also started to gain weight; I put on over 20 pounds.

Then early this year I started experiencing a new pain in my stomach. My family doctor doubled the Dexilant dose and referred me to a gastroenterologist in Oakville.

The gastroenterologist said that my stomach problems are probably related to too much acid there and that my Dexilant dose is very high. I have no idea how to reduce the acid level (I'm sure we'll deal with that later) but he wants to try to reduce the Dexilant; apparently it can be increased or decreased without any problems or side effects which is great. Before we do anything, though, he wants to see my stomach so I'm scheduled to go in for an endoscopy on the afternoon of May 3. He'll look around, take some samples (ie biopsy a few areas) and test me for H. pylori.

He also said that my recent weight gain may be related to my other painkillers, which are known to slow down the intestines, and that reducing the amount I take may make it easier for me to lose weight. (In addition to some dietary and exercise changes, of course!)

Speaking of reducing that painkiller, my family doctor is apparently going to be away for six or eight weeks starting in May. There's no way that I will do this kind of reduction without his supervision or the supervision of a doctor to whom I'm referred so that will wait until summer. I'm quite sure I'll be fine.

In other news, getting to yesterday's appointment was a bit of a production. The original plan was for me to take Gozer to Ian's parent's house so that they could visit with her, but neither they nor Gozer were feeling well. Gozer was groomed on Monday and had mild diarrhea afterwards. She's getting better but I didn't want to impose Gozer (and the possibility of an emergency diarrhea walk) on people who weren't feeling well. Also, I didn't think it was a good idea to take Gozer on a long drive, so the new plan was to take her to Ian's work.

Then I found out that a good friend of mine went into residential hospice yesterday. She's been receiving palliative care at home for about a year but has declined significantly in the last few weeks; she has metastatic breast cancer with brain tumours and she's out of treatments for them. The tumours are growing and causing additional cognitive and physical difficulties and she could no longer be cared for in her own home. At this point it isn't known if she'll be able to receive visitors.

I was and am devastated to hear this. She's lasted an incredibly long time: she wanted to see her kids start school last September and she did! Plus she was here another six months or so! But she's close to the end now and I'm grieving... there are many, many tears and that tight feeling in my chest that makes me want to curl into a ball in a dark corner. I told Ian what was happening and we decided that since I was crying so much and was so weepy, it wasn't safe for me to drive to Oakville. Driving while crying really isn't safe for me.

So instead of taking Gozer to Ian's work so that she didn't have to do a long car ride, the new new plan was that Ian came home and the three of us drove to and from the appointment. Fortunately, Gozer was just fine during the drives and we didn't have to stop for any emergencies. Ian took her for a nice long walk during my appointment and she's doing better.

What a day, huh? I'll keep you posted with what happens with all my upcoming appointments and stuff.

Radiation oncologist appointment

I saw my radiation oncologist this morning for a brief follow-up. She was slightly less surprised than my regular oncologist that my skin over the irradiated area was still pristine because the doses weren't given to a broad area but were very small and came from multiple angles.

We talked about the fatigue I'm still experiencing slightly and she said it was normal and would get better. It's not that bad but I definitely need a nap every day - especially if I do anything outside the house. I can live with that - honestly, although I know it was better before radiation, I'm not sure it was that much better - but a little less fatigue would be nice.

She asked about pain, and I'm really not experiencing any now, which means that either I have no pain or it's very well-controlled with my painkillers. I told her that I was thinking of waiting until summer - or at least until this fatigue is over - and then tapering down my painkiller. I suspect that I truly have no pain because the radiation should have taken care of whatever was there and that I don't need this level of painkiller. Reducing the painkiller is going to be a giant production to; a couple of years ago I changed painkillers and it was a very difficult experience. I don't know why I wanted to wait so long to do it except that I'm not looking forward to that particular experience.

She said it was better to do the taper sooner rather than later, and the reason she gave for it is that if I'm taking painkillers to deal with pain, I won't become addicted to them but if there's no pain then I'll become addicted. I'm not quite sure what she means by "addicted"... I don't crave them or get high from them (not that I could, anyways; painkillers given for cancer pain fix the pain first and get the person high second, and at this point I've been taking them so long that my brain has rewired for them), and that's not going to change.

In my case, my biggest issue is that I'm dependent on the painkillers so that when I miss a dose, I start going through withdrawal symptoms. It's those withdrawal symptoms that make the tapering down difficult. I will call my family doctor sooner rather than later (or the summer) and get the process started. I think I've read about things that can help this process be less uncomfortable and maybe they'll work for me.

Other than that, she's going to see me again in four months to see how I'm doing. Overall, she's very pleased with how things are going, so I am too!

Back to normal?

I've been taking it easy and feeling pretty good lately. I haven't felt as tired as before abd I've been to the studio again. Yay! I'm still working on my earrings and I haven't given up even though it got difficult at one point. So that's something, right? I did post a picture of the earrings in progress over on my @gozermom Instagram page (Gozer has her own @gozerdog page. I know, I'm worse than some parents).

It's good that I'm feeling​better because spring is coming and there's lots to do in the yard!

I was supposed to see my radiation oncologist last week but she was away so my appointment will now be next Tuesday, April 4.

Anyways, theres not much going on but I thought you'd want to know that things are pretty well back to normal.

A visit with my oncologist

I saw my regular oncologist today. I'll see the radiation oncologist in about two weeks for my final radiation checkup.

Anyways, my regular oncologist was surprised to see that I have zero skin damage or problems from the radiation. I'm not quite sure what she expected to see; super-burned skin? Festering sores? Either way, she's happy I'm not experiencing that side effect. And that I'm not experiencing any esophageal side effects. I'm doing great, apparently.

Well, except for being exhausted. But that's normal and should pass in a couple of weeks. I hope. I really do hope that's true because I slept for three hours after I got home this morning, got up long enough to take Gozer for a walk, and then slept two more hours, when Ian got home. I'm sooooo tired. It feels like sleep doesn't even help; that I'm walking around in an exhausted fog even when I'm awake. At least when I'm asleep I don't know how tired I am because I'm asleep.

Anyways. Back to the oncologist. She was very happy with how I'm doing. She's going to scan me in June to see if the radiation treatment worked. She also said that normally, when one of her patients experiences progression (my uptick in scans is little and in one place but it's still considered progression), she has to think about whether the systemic treatment has failed. In my case, that treatment is Femara, or letrozole. She decided that since I've still only got the one spot that was just treated, the Femara may be protecting me against progression in a new area. So she's keeping me on the Femara and we'll reassess after the scans in three months.

Oh yeah, and my CA 15-3 tumour marker is holding about steady at 42; going back through previous results, it was last 40, before that 38, and before that 44. Normal is below around 30 or 32. So mine has been above normal for a while but steady, which means it's unlikely that there's any other active disease going on other than what was recently treated.

So that's today. We were waiting for a person to come and sell us a new fireplace because ours is broken but the weather is bad on the other side of the city so he's coming tomorrow. And we had shingles go flying off the roof a couple of days ago (since fixed). And Gozer hunted down a mouse and ate part of it yesterday. And I trapped two more last night. Sigh.

Side effect update

I hadn't realized that it's been so long since my last post - the days have just flown by! I've actually been feeling ok overall. Of course I'm taking it very easy and I'm not really pushing myself; at the slightest hint of pain I take painkillers (it's better to deal with it early than try to treat it when it's raging) and I rest if I feel even a bit tired. Honestly, though, I haven't had as much pain or fatigue as I expected and my esophagus isn't bothering me. My lymphedema is acting up a bit which is no surprise, but the swelling is mild and easily controlled.

Ian's been so supportive also and has sent me to rest if I even look tired. He's also spent some time doing some of the things I normally do so I don't have quite so much on my plate. I really appreciate his help and support; I would have a tough time without it.

My sisters asked great questions that I think most of you will be curious about as well. One asked how long the doctor said it would be until I feel like my old self again. The answer is that the bulk of the side effects should be gone after a month or so. The fatigue can linger longer than that but I should be feeling pretty normal after a month. I'll be seeing the radiation oncologist for a follow-up on March 23 (four weeks after treatment ended) to see how I'm doing.

My other sister asked when will they know if it worked as well as they hoped. We'll know whether the treatment worked when we do my regular scans in the summer. There's no point in doing scans right now because things tend to get worse before they get better, and I don't mind waiting that long to be sure. We may see other indications that the treatment worked before the summer scans: for example, the pain and my tumour markers will decrease after a possible initial increase. I see my regular oncologist next week and I've already done my tumour marker bloodwork already so we'll see where it is.

If you have questions about any part of this, please ask them either in the comments or by emailing/texting/messaging me. If you're wondering about something, someone else will also be wondering

Almost done

That's the fourth one done! I'm starting to feel really tired now, my sternum is starting to hurt and is extremely tender to the touch, and my esophagus is also feeling a bit raw. All of these side effects are expected and I think I can expect some to get worse over the coming days. I haven't seen any skin changes, which is good.

Today's treatment went a bit better for me. I did some practicing yesterday and I realized that the only way I could inflate my lungs enough and hold it was to be fully, completely relaxed before breathing in. I tried doing that today and it definitely made a difference: I had one segment where I didn't breathe in properly because I wasn't relaxed but the rest of the segments went as well as they did the first day. I told the nurses about how this worked for me so that they can give this information to other patients.

When I was getting put into position today, I looked at the linear accelerator and noticed that instead of seeing a rectangle of light, I saw a heart-like shape (a real heart with an aorta). On the sides of the opening are a series of rectangular lead things that can move horizontally between the side and the center so that they meet at the center. They can be moved so that the shape of radiation field is just right for each person. Once I realized that, I watched as the machine went over and around me and I saw the lead things moving continuously to change the shape of the field. Is that cool or what?

I saw the radiation oncologist today and she confirmed that the side effects I'm experiencing are normal and expected. She asked if I wanted a prescription for Magic Mouthwash and I said yes. I wasn't sure whether she was giving me a physical prescription or was just leaving it over at the pharmacy, so after waiting for about 10 minutes I was tired and left. I'm going to assume that the prescription is on file at the cancer center pharmacy - the only place where it can be filled, according to the oncologist, probably because it's made (compounded) specifically for the patient and they have the ingredients there.

When I got home I crashed. I'm going to take it very easy tonight and probably go to bed early.

One down, four to go

Well that's one done. Today's radiation appointment was fairly straightforward. When I checked in I received my itinerary which showed that I'd be receiving five treatments altogether over the next five business days (Monday is a holiday). Then I spent 15 minutes talking to one of the nurses about what was coming. I only had one question: can I drive myself to appointments? She said that as long as I was feeling up to it, I could, and that the fatigue probably wouldn't kick in until after the treatments are finished.

Then I got changed and waited. The overall procedure was much the same as during the preparation. The main difference was the machines: instead of being in a CT scanner, I had an x-ray and the actual radiation delivery device.

Once they got me arranged and all lined up they took a couple of x-rays to make sure that I was lined up properly. And then the x-ray retracted and the radiation device lined up on the side.

Then they asked me to hold my breath while the machine rotated about 90deg from my side to about my midsection. We took a break and then I held my breath while the machine rotated to my other side. After that we repeated the process with the machine going the other way. I think if I could have held my breath for over a minute we wouldn't have needed a break but I'm happy with only holding it for 30 or 35 seconds at a time. Apparently I did a really good job of holding my abdomen perfectly still so that's great!

I was nervous driving to the hospital. It's a big change, after all, so it's no surprise that I'd be unsettled. Also, I'd seen my family doctor for my annual physical this morning and was tired out from that. I'd have changed that appointment but my stomach has been hurting again (probably due to long-term NSAID use) and I wanted to talk to him about it. He's sending me to a gastroenterologist.

Once I got there I felt less nervous, and then while the treatment went on I dozed off a bit. Most of my next treatments are early in the morning so I'll pretty much be able to roll out of bed and go. 

This radiation party is about to start

I finally received a call from the radiation department this morning with good news: my first radiation appointment will be Thursday, February 16 at 3:15pm. I'm happy that this is finally happening because I was starting to wonder what was going on. I guess that they'll be using the breath-holding technique that we did during the radiation preparation appointment a couple of weeks ago.

The person who called also said that I'll receive a schedule for the treatments on that day so I am inferring that there will be more than one radiation treatment. I'll need to figure out transportation to and from the hospital; they typically don't want people driving themselves because of the fatigue associated with radiation. I expect I'd be fine to drive the first day as I don't think the fatigue starts right away but we'll see. It's kind of hard to make any arrangements without knowing how many treatments there will be or what time of the day they are. We'll figure it out.

So here we go!

Radiation therapy preparation redux

Today's radiation therapy preparation went well, I think. You might remember that the oncologist hadn't been able to figure out a way to give me the treatments without affecting my heart and she wanted to try a different position for the radiation. Because the position is different, they need to repeat the CT scan and i went in at 7:45am this morning to do that.

While the basic procedure was the same as before - get me into the right position and lying still and then taking CT scans - the details differed. This time, they didn't use the bean bag mold thingy to hold me in position. Instead, I had to put my arms over my head, with my hand resting against poles situated above my head. I wasn't supposed to grip the poles because they wanted my arms relaxed (especially since I was in that position for a half-hour or so) so I ended up kind of resting the webbing between my thumb and forefinger against the poles with my thumbs straight and my fingers loosely curled around the poles. 

I have a hard time raising my left arm (the side where my primary cancer was) over my head both because they took out lymph nodes in my armpit, leaving scar tissue and reducing mobility, and because I have lymphedema on that side, reducing mobility further. Therefore, the position wasn't what I'd call comfortable but it also wasn't unbearable. 

Once they got me into the basic position they started finding all the alignment tattoos and pushing and pulling me into the exact position. Because I have the original alignment tattoos and they added new tattoos during the last preparation, they had to figure out which to use. The nurses ended up circling the ones to use and crossing out the other ones, and then taking photos of my tattoos for my chart.

After I was fully aligned in position, they put a small weight on my diaphragm so that they could see where my diaphragm was on the scan. Then we got started.

I spent the rest of the time lying in the CT scanner. The scanner itself is donut-shaped; the thing that scans goes around and around and around in the donut while the patient lies on a table in the middle of the donut. During an actual scan the scanner picks up speed but during all the waiting, it kept a slower pace and to me that pace sounded like whoosh-whoosh-whoosh-whoosh-whoosh. I found this noise oddly calming, almost like water or fluid whooshing back and forth around me. Between that soothing noise and the fact that it was 8am, I dozed off a bit.

They did two CT scans, one with me just breathing normally and one with me holding my breath. They also had me practice holding my breath so that I was comfortable doing it in that position. I'd been practicing holding my breath since I got the call from the radiation oncologist but I hadn't been practicing with my arms above my head and a small weight on my diaphragm - and those do make holding my breath feel different.

When the nurse came to get me and we talked about what we were going to do, I told her that I'd been practicing holding my breath but feeling nervous about whether I was doing it right. She said to be sure to fill my lungs, not my belly, and to keep my back flat on the table. I kept these points in mind when I was holding my breath.

Basically, what I did was take a breath in, blow it alllllll out, and then breathe in slowly and completely, trying to fill my lungs from the bottom up. When I'd been practicing, I kept a count to see how long I was holding my breath so I did that during the radiation prep too. I didn't have to hold my breath for nearly as long as I can so I was pleased about that.

The nurses said that I'd done a good job holding my breath because I didn't move and because I'd got my diaphragm up really high. Hopefully this approach will work. They did say that there were still more approaches the radiation oncologist can take, so I'm not out of options here. That's a load off of my mind. 

So now I just wait for someone to call me to either set up my first radiation appointment or to tell me that this approach won't work either and I need to go back for a third prep session.

Not quite the update I'd hoped to give

My radiation oncologist called today to tell me that she's been working on my treatment plan and is having trouble ensuring that the radiation beams don't hit my heart. Apparently my spot is quite close to my heart, which makes giving it radiation quite tricky. I don't want to have a damaged heart and if the radiation beams don't clear the heart, I'm looking at it being damaged.

She's not giving up yet, though! She asked if I can hold my breath for 30 seconds and I said yes (I checked afterwards and I can hold my breath for at least 40 seconds). She said she'd like to redo the CT prep with me holding my breath because apparently inflating the lungs pushes the heart out of the way. It's possible that this position and technique will give her the clearance she needs to give me these treatments. Of course I said yes I'd be willing to redo the scan and prep!

She also asked me to practice holding my breath as the longer I can hold my breath, the shorter each treatment will be. If I can only hold my breath for 10 seconds then they can only apply less than 10 seconds of radiation, after which they have to wait until I'm ready again. Of course if it had to go that slowly it would be ok but it's better if they have to stop less frequently.

A couple of hours later the nurse called with my new CT scan and prep appointment. It's scheduled for Tuesday, January 31 at 7:45am (eeep that's early!). Hopefully this approach will work.

Radiation therapy preparation

I think today's CT scan and marking, or radiation preparation, went well. I don't remember exactly what happened during my previous radiation prep treatments so I can't really say whether or not this one went better or worse than those ones.

When I got to the cancer center I hadn't realized that I didn't have to check in at the main desk so I wasted a little bit of time waiting in line there. Fortunately I wasn't late and my nurse was so it all worked out just fine.

The nurse started off by explaining what would happen: that they were positioning me to receive the radiation treatments with the help of a CT scanner and that I would have to lie very still. To help me lie still, they would be setting up a mold around me and they would be adding compression to my abdomen so that I didn't move much when I breathed. At this point we don't know how many treatments I will be receiving as the oncologist wanted to see the CT scan to see what was going on around my sternum. It will take an unknown amount of time to make all the calculations. I'll receive a call for the first appointment sometime and when I come to that appointment I'll get the the treatment schedule.

It sounds kind of loosey-goosey, doesn't it? Normally when people go in for radiation, they're told how many treatments they'll get. Then again, most people are receiving a standard radiation therapy treatment for their cancer, and in those cases everything is pretty much known. My treatment is customized for me and must take into account the amount of radiation I've received to that area already along with the arrangement of my organs and bones. Customizing something always takes longer than giving the standard thing.

After she talked to me she took a photo of my face for my file (apparently I've changed a little in the last decade), a second nurse came in, and we got started.

I laid on a narrow, hard CT scanning bed with laser lines projecting down onto me. One of them kept going into my eye so I ended up just keeping my eyes closed throughout. Some of my alignment marking tattoos from the first radiation treatments are still there and they used those to align me. It's an odd sensation, lying there still and heavy while they pushed and pulled me into position. Once I was fixed in place, they pushed what would become my individual mold close to me so that I couldn't move. Apparently this mold is like a giant beanbag with little styrofoam balls in it; to make the mold, they suck all the air out and presto-magico, instant mold! When I'm done with it they force air into it and it relaxes again, ready to be used again.

Once I was fixed into position, the oncologist came in and added the abdominal compression. She kept tightening it until my breathing was balanced between comfortable and uncomfortable. It's difficult to describe the feeling of trying to breathe when my abdomen was prevented from expanding. I could only take shallow breaths - taking deep breaths was really hard what with the big weight thingy on my abdomen - which led me to feel like I wasn't getting enough oxygen. Then I would start to feel like I couldn't breathe and that I was starting to suffocate and I'd have to remind myself that I was getting enough oxygen and to relax. Keeping my eyes closed helped me stay calm, I think. So did all that meditation training - for a while I was doing that "breathe in through one nostril and out through the other" thing.

After all that, the CT scan started. This was just like other CT scans except that I didn't have to hold my breath and I didn't have to have any contrast injected into me. When the CT scan was done, the nurses came back, removed the abdominal compression, and made little x's where they wanted to place alignment tattoos. They gave me the little dot tattoos and let me go. The whole thing took about an hour.

I'm a little nervous about the treatment, I think. I was very chatty this morning (I get chatty when I'm nervous) and the nurse made it kind of clear that she just wanted me to be quiet and let them do their jobs. Closing my eyes helped me do that, too. I'm also having episodes where I'm feeling a bit depressed. I think I'm feeling this way because things are changing for me and I'm entering a new metastatic chapter. Add to that all the unknowns associated with this change and it's not surprising that I'm feeling a bit nervous and down. I'm not feeling so sad that it's a problem; it's just something I need to be aware of and I need to make sure I take care of myself.

After all this, the actual radiation sessions should be pretty quick and straightforward.

Getting started

The cancer center called today asking if I could come in tomorrow morning at 8:15am for the CT scan and to get the markings. Of course I can! Let's get this stereotactic radiation therapy party started!

I've been waiting for this call - I had kind of expected that I'd hear from them before now but I guess my treatment isn't exactly urgent, given that my cancer has been stable for so long.

The appointment is supposed to take about an hour and fifteen minutes. I don't know when the actual treatments will start but I expect it'll be a matter of days rather than weeks.

Cancer news

Now for my cancer update. It's going great, honestly - my scans have all showed nothing new and my tumour markers have stayed pretty much steady. At my most recent oncology appointment this past Monday, my oncologist and I decided that I would see her every six months instead of every three just because everything is so stable. I'll see her next about two weeks after my scans in August, which will be around seven months or so instead of six but I think that will be fine. Of course if I notice anything unusual, I'll call for an appointment.

She said that my metastatic cancer is oligometastasis because just one organ (in this case one bone) is affected. They're starting to discover that people who have oligometastasis can receive curative treatment and live for many years after diagnosis.

I'm thrilled, of course! This is wonderful news. At the same time, I do feel sort of weird about it. I have a friend who is not doing well (they're talking about months instead of years left for her) and lots of other friends who also aren't doing well... along with a ton of other friends who have died. They're going through so much with treatments and whatnot and I'm just not going through all that. I feel like I don't fit in with people who have metastatic breast cancer because things are just going so well for me.

I've made a chart of my CA 15-3 tumour markers from the beginning; they're still oscillating in a fairly narrow range.

So there you have it; cancer-wise, things are awesome right now!

My eyes

Did I mention that I was seeing a new optometrist? My previous optometrist was fairly far away and was always, always running late. My new optometrist is much closer and is on time. Plus they do more tests there, including a visual field test and optical coherence tomography, a test that measures the retinal nerve fiber layer. I see my optometrist every six months in part because my prescription is so high.

One thing this optometrist has discovered is that my eye pressure (the technical term is intraocular pressure) is also high. On the automatic test, my eyes register a pressure of about 25 (12-22 is apparently normal), and on the manual test, my eyes register a pressure of about 22. My optometrist says that my eyes are deep-set and so they don't register properly on the automatic test, giving a higher-than-normal reading, but my eye pressure is still at the high end of normal during the manual test.

We've done the optical coherence tomography each of the three times I've been to this optometrist and the results have been unchanged in the year and a half. This is good: high eye pressure can mean glaucoma, but the retinal nerve fiber layer doesn't show any glaucoma. Therefore, my optometrist has diagnosed me with ocular hypertension (high eye pressure).

My optometrist and I talked it over and we've decided not to treat the ocular hypertension right now but to just watch it. I'll continue going in every six months and if the pressure gets any higher or the retinal nerve fiber layer shows any changes, we'll treat it then.

So that's two new things going on: my stomach issues (which flared up again last night and today) and this ocular hypertension. Lucky me.

Recent doctor's appointments

I saw my oncologist yesterday for my quarterly visit. My CA 15-3 tumour marker for January and April is staying steady at 40 and 39, respectively, and the rest of my bloodwork looks good. I have my annual scans coming up in the next two weeks but we expect them to be fine.

In barely-related to cancer news, about two weeks ago I developed severe stomach pain. I couldn't stand up straight, I couldn't eat, and I was exhausted all the time. I went off the Celebrex I've been taking for seven or eight years and saw my family doctor about a week ago. He put me on Dexilant, which reduces the acid in my stomach, and it's helped: I can eat normally. I can also try going back on the Celebrex today although there's no guarantee that I'll be able to stay on it.

The reason this is tangentially related to cancer is that I've been taking the Celebrex to deal with the joint pain caused by the Femara I've also been taking for years and years as well as the lower back pain I have. Since I've gone off the Celebrex, that joint pain in my hips and shoulders and the pain in my back has returned. I have a hard time sleeping because of the pain. Percocet can help me get to sleep but I'll usually wake up when it wears off. Sigh.

I talked with my oncologist about this and we've agreed that if I can't stay on the Celebrex to try some non-drug techniques for the pain. She's recommended Chinese acupuncture (apparently that kind has been shown to have a beneficial effect beyond the placebo effect) and cardiovascular exercise. I'm still carrying extra weight (not eating for a few days appears to have made no difference) and I know I'm out of shape so I'll see if I can set up our exercise bike again. I don't know what I think about acupuncture but I figure that it's unlikely to do me harm so it's not a bad idea to try it. All I have to do is find a suitable practitioner.

Lymphedema update

I finally picked up my new set of lymphedema compression garments. I wear a compression sleeve and glove whenever I fly on a plane, when it's above about 20C outside, or if I'm doing physical labour with my hands (like gardening) as my hand and arm swell up under those conditions.

I have two previous sets: one that didn't fit well and that I used for gardening, and another set that fit well and that I wore daily. It's looking pretty ratty, though, and I wasn't happy with the compression I was getting from the gardening set so I thought it was time for a new set. I think they're supposed to be replaced every six to twelve months or so anyways as the garments become looser over time. When I ordered them, I discovered that I had to get new Ontario Assisted Devices Program (ADP) approval, which required my family doctor's and my physiotherapist's signatures. I didn't want to go through the hassle of getting the signatures but I'm glad I did: the program pays for 75% of the cost of the set, which in my case works out to them paying $450 and me paying $150. 

I was given a list of physiotherapists in the region who could complete the form but I decided to go to the cancer centre because that's where I received my initial lymphedema treatment and they have me on file. It turned out that I couldn't just make an appointment since it had been a couple of years since I was treated there; I had to get a referral from my oncologist. The waiting period is usually about five weeks but my nurse worked really hard to get me in within a week and a half. Yay for helpful nurses!

Anyways, while I was there this morning getting the paperwork signed, the physiotherapist measured both my right and left hand and arms. Because I'm right-handed, my right hand and arm should be slightly larger than the left. When I first received treatment, my left hand was 0.5cm larger than the right and my left arm was more than 1.0cm larger than the right at each point. This time, my left hand and arm measurements were all less than 0.3cm larger than the corresponding right hand and arm measurements. This is a fantastic result! It shows that my lymphedema is well-controlled at the moment. I'm very pleased.

To be honest, things aren't always great with the lymphedema as I've had some trouble with pain and tingling in my left thumb. I told the physiotherapist and she said that this happens because the swelling is pinching a nerve, which is what I had figured was going on. When this has happened I put on my compression garments and stretch and massage the area. I'll even do my lymphedema exercises if I have to, and all of that seems to help. If for some reason all that stopped helping, I'd go back into the physiotherapist for treatment.

After I saw the physiotherapist, I picked up my new set of compression garments and I'm good to go now. I don't love the look of them or  that they can be hot to wear or that my arms get an uneven amount of sun... but I'll continue to wear the garments because not having a sausage arm and hand is just so much more comfortable than having one.

Oncologist appointment

Gozer seems to be doing much better on her new food. Her urine is a good colour, she loves the food, and she doesn't seem to be licking any more than usual. The food does make her drink a LOT more so we have to be sure she gets lots of chances to pee during the day - at least every three or four hours. I'm very happy that she's doing ok.

I saw my oncologist this week and we're taking out my portacath. It comes out on March 2. I've read that the surgery is quite easy - even easier than going in. That's good because I had a hard time when it went in because my pain wasn't fully under control. And I'm a bit of a wimp. It feels strange to think about it taken out because I thought I'd never be without it. Honestly, I didn't think I'd make it this long -  I'm definitely one of the outliers, survivor-wise.

Not having my port will be nice because it won't show anymore and I won't feel it in my neck (the catheter part loops up by my neck). The healing will be a bit tricky because I won't be able to life anything for a few days (including Gozer) and I won't want anyone jumping on me (including Gozer) or touching it (including Gozer).

My tumour markers were at 36 which is still good. So... good news all around!

Gozer's birthday and my optometrist

Time flies! Two Three years ago today Gozer joined our family. She's settled in so well that it's as if she's been here forever; I can't imagine life without her, now.

Update: Gozer came to us in 2011, not 2012, so we've had her for three years - time really does fly!

 We're celebrating by giving her an extra cookie and by giving her a replacement moo cow squeakie toy. Moo cow is a plush toy with a small round squeaker in it - the kind that's in most dog toys. Normally Gozer doesn't get plush toys because she eviscerates them but she loves them so much (probably because she can eviscerate them) but for her "birthday" we made an exception. I gave her moo cow this morning and she bit through the squeaker within one minute, after which she started gnawing on the plush legs and head. This is a toy that won't last long.

 I also saw an optometrist today. I'd been seeing my old optometrist for years and years but she's located in Uptown Waterloo, which is about a 20 or 25 minute drive away, and she's always, always, always running late. The last time I was there I waited for 40 minutes before I was told that she would be running even later; I rescheduled the appointment and walked out. Then I went looking for a new optometrist who was closer to home.

 My new optometrist is located at River St and Victoria Rd, about a 5-10 minute drive, a 45 minute walk, or a 15-min bus ride (including walking time to and from the bus). When I showed up this morning, they were running early due to a cancellation. The people were all very friendly and helpful. I loved the optometrist. Her eye prescription is just a little bit worse than mine at about -10 so she understands the particular challenges of having really bad eyes. She said that she will always dilate my eyes when I see her, which is fine with me.

We talked about laser surgery to correct my eyesight and she said that it's possible for people with our prescription (depending on the thickness of our corneas), but she wouldn't recommend it for me because of my cancer and the treatment. My eyes are already dry and the surgery can make them drier which in turn could impede healing. I don't need to add that kind of burden to my immune system, so no eye surgery for me. She did give me some sample contacts to see if I like the way they feel. It would be nice to be able to wear contacts for parties or Halloween or anytime I wear makeup. When she checked my vision, she saw that my left eye's prescription has improved ever-so-slightly.

It turns out that when they did the puff test to measure the pressure in each eye, the pressure was a bit high which is new for me. The optometrist then used one the new-to-me machines (she has more advanced equipment than my old optometrist) to take a picture of my optic nerves and to measure the thickness of my retinas, and it showed that there were some areas on my retinas that were thicker than the statistical norm. She isn't saying that I have glaucoma right now but she's concerned that I might be developing it. Therefore she's asked me to do a vision field test next week. If the results indicate some problems, she'll see me at least every six months; otherwise, it'll be once per year. My old optometrist used to do a puff test (although I haven't had one done in quite a while) but didn't have one of these scanning machines so I'm really happy that I've switched.

 I spent some time afterwards looking at their eyeglass frames. The people didn't really leave me to do that on my own, I think because some frames were tucked away and I wouldn't know where they were. I didn't buy anything this time but I'll keep looking. My glasses aren't going anywhere so it makes sense to me to have the prettiest, most flattering glasses possible.