Wednesday, April 12, 2017

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.

Tuesday, April 04, 2017

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!


Monday, March 27, 2017

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.

Sunday, March 19, 2017

Not quite as better issue I thought

You know how it is when you've been sick and you think you're better so you overdo it and relapse? That's me today. I loved being in the studio yesterday but however many hours I was there - four? five? - was way, way too many. I slept hard last night but was exhausted when I got up. I ended up sleeping all afternoon and would still be asleep if Ian hadn't woken me for dinner. Looking back, I've been asleep for about 15 or 16 of the last 24 hours.

I had planned to go to the studio again today to see my friend and to work on my project but I was just too tired. I was also supposed to go grocery shopping but didn't get up from my nap to do it.

I expect I'll be better soon but I think my next visit to the studio will be only two or three hours.

Saturday, March 18, 2017

At the studio today!

I went to the metalsmithing studio today! I haven't been there in over a month because I'd been so tired. Well, and also because when I'm not feeling creative I have a hard time figuring out what to work on when I'm there. Because my creativity hasd only recently returned, I figured I'd be better off figuring out a project and working on that while I was there. 

I looked through my stone collection (I have lots, all sorted by colour) and picked out two pairs of rhodochrosite stones to​ combine into earrings. One pair is a 6mm diameter round cabochons in a transparent medium and the other is a pair of 20mm x 8mm ovals in the more usual pink and white banded pattern. I didn't take any pictures do you'll have to wait to see what they look like.

Anyways, I spent the bulk of my time making bezels for these four stones. A bezel is a strip of metal that wraps around the stone; to set the stone, the top edge of the metal is compressed against the stone. This is a very secure setting.

I could tell it had been a long time since I'd been at the studio because it took me a long, long time - 2 hours! - to calculate how long you make each bezel. It should have taken 30 minutes... 45 minutes tops. For round stones, all I do is calculate how long the strip should be by calculating the circumference of the stone and bezel. The way to figure it out for non-round stones is to cut a narrow strip of masking tape, wrap it carefully around the bottom of the stone, and use that as the base length. I needed to add enough metal to account for the thickness of the bezel strip and this is where I ran into problems.

Typically I pretend the circumference comes from a round stone, then figure out the diameter for this pretend round stone, and then recalculate the circumference by adding the bezel thickness to theatdiameter. It's not an exact method but it works pretty well. For whatever reason, instead of working with circumference I was working with area... Which did not give me the results I expected. Worse, it took me a while to figure out what was going on. Oops!

In the end I got my bezels cut and soldered closed. I'd hoped to do more in the hours I was there but at least I got something done.

Now I'm very tired. All this thinking has left me sleepy.


Thursday, March 16, 2017

Definitely better!

I can now safely say that I'm doing much, much better. I don't know if I can say for certain that the side effects are completely over, but the worst has definitely passed.

The pain has been unnoticeable for some time now although it flared up when Gozer launched herself off of me using the radiated area (we were at the vet's and she was sitting up on me with her butt on my neck; when she jumped off, one of her back feet was in the area of the spot and she pushed against it). As quickly as the pain flared, it disappeared.

Fatigue-wise, I'm doing great. I'm waking up feeling well-rested both in the morning and after my naps, and my naps are back down to a reasonable length. I've always been a napper so having to take naps each day is normal. What wasn't normal was having naps lasting hours and hours long and not feeling rested afterwards but all that is over.

I'm also starting to feel engaged in the world around me. Since treatment I've been feeling somewhat depressed and uncreative. I felt like the world around me was grey and dim and that time was just passing me by. Now I see colour!! I'm excited to see the sun and to see what each day will bring. With the lifting of my depression I'm also starting to feel like I need to start creating things. I look at inspiration pictures and I actually feel inspired to design and make things. This is so exciting!

So yes, whether all the side effects are over or the worst has passed, I'm feeling good.

Monday, March 13, 2017

Getting better

I think I'm feeling a bit better. The extra pain is gone and although I'm a bit tired right now, I don't feel as exhausted as I did last week. I also stayed awake all day yesterday even if I did have a two hour nap in the evening.

It would be great if my side effects were done and over with because I'm tired of being tired. Honestly I'd be thrilled if the side effects were markedly better even if I still have to have naps sometimes. I was napping in the late afternoon before radiation treatment so I'd be surprised if I didn't nap after treatment and after the side effects​are over.

We also think we've figured out where the mice were getting in. We set six traps last night and caught zero. So the mouse problem might be over, too!

Things are definitely looking up.

Friday, March 10, 2017

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.

Wednesday, March 08, 2017

Is that light way over there?

I'm feeling ever so slightly optimistic that the worst of the pain is over. It doesn't seem to be bothering me so much now and I've reduced my use of supplemental painkillers. Yay!

However, I do seem to be more tired than I was before. Today has been a bit better, but the last two days have been tough. Each activity has been preceded and followed by a nap so doing anything requires some planning on my part. I could never do all that much in one day but I can do so much less than I could do before.

I have been continuing to walk Gozer because I've read that exercise helps to deal with radiation (and chemotherapy) fatigue. I can barely imagine what things would be like if this fatigue is better than it could be because it feels endless and overwhelming now.

For all that, emotionally I'm in a pretty good place. I'm feeling ok, mostly, and I know things will get better. I am still prone to being overwhelmed and stressed if stuff starts happening - like, for example, the shingles that went sailing off our roof today - but all that still seems to be manageable.

I am definitely stressed, anxious, and overwhelmed because the roof needs repairing and those feelings are stronger because I'm exhausted since I didn't get a nap today. However, I know that the roof will get fixed eventually (hopefully before it leaks), I'll feel better after a rest and some food, and the world is not ending. I don't feel like I need to curl up in a ball and hide (my usual reaction to house- or bureaucracy-related stress) and I'm not bursting into tears for no reason. I'm also aware that I've got a delicate emotional constitution at the moment and am keeping a close eye on myself and trying to take care of myself.

The fact that the pain is decreasing is definitely something to celebrate :) And although I'm napping a lot, I'm still leaving the house and doing what I can. Finally, although I have reason to be stressed, I'm not falling apart which is a huge victory.

I think there's light at the end of this tunnel!

Saturday, March 04, 2017

Me and my side effects

Well, I'm still hanging in there. I've been so very tired over the last couple of days: after walking Gozer I've been crashing into sleep. Gozer doesn't mind this because she gets to snuggle up to me when I sleep, as long as I'm on the chair downstairs. It reclines to be almost flat and is quite comfy for sleeping, even if the dog is taking up lots of room. And even if I have to wait for her to finish licking my face and hand before she settles in.

I've also done my lymphedema exercises each of the last two days because I've been feeling that heaviness in my shoulder that goes with lymphedema. I don't love these exercises because some of them make my lymphedema-affected areas feel weird. For example, in one of the exercises I have to sit or stand with my back straight, keep my neck and arms relaxed, and raise my shoulders up, and then lower them as far as I can. The lowering part feels weird.

Still, I know the exercises work, and because they're performed slowly and deliberately they're very meditative and a good exercise in mindfulness for me. I just hadn't planned on having to do them every day.

Finally, I am still experiencing the sternal pain. I know that the pain will peak at some point and I hope that point comes soon.

Thursday, March 02, 2017

Hello there, side effects

Up until yesterday I thought that I might possibly get off easy with respect to side effects. I thought that maybe, since the treatment was so targeted, I wouldn't have too much pain or fatigue. So much for that; I'm definitely noticing side effects today.

It could be that I overdid it yesterday (Gozer decided that she needed a 4km walk in the rain yesterday afternoon), or it could be that the mild lymphedema swelling which extends to my chest and side is increasing the side effects, or it could be that this is naturally when the side effects really start to show up. Or it could be a combination of these or other factors; whatever the immediate cause, I'm noticing a marked uptick in sternal pain. My sternum is now achy much of the time and gives me occasional sharper pain. The pain is somewhat dulled because of my regular painkillers but it's definitely there.

To manage the pain I'm taking additional painkillers, which increases the fatigue I'm also experiencing. As I write this I'm thinking I'll need to make dinner soon and the thought of getting up and doing all of that - including all that standing - is exhausting. I don't know that I can sleep but I want to try... Even if "trying" is just zoning out in front of the TV.

I did do my lymphatic massage exercises this afternoon. Hopefully that will diminish whatever impact the lymph fluid buildup is having on the side effects.

Wednesday, March 01, 2017

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

Friday, February 24, 2017

More than just tired

I hadn't planned on writing anything today but I've been feeling tired and it's affecting me in ways I'd forgotten it did so I thought I would write about that. I could pass it off as being cranky, which is how I think it comes across to other people, but it feels a bit different than just being cranky. To me, I'm reacting in "easy" ways, following well-established emotional pathways because I'm too tired to try to react in another way.

There are two main emotional pathways at work: anger and depression. For much of my life I've had anger issues; pretty much any negative emotion I might have translates into anger, and although I've done a lot of work in that area, those original pathways and reactions are still there and easy to find. Therefore, when I'm really tired and something doesn't work like I think it should, I feel this huge anger. Some of that reaction is that I have limited energy and can only imagine things going one way; any deviation from that and poof! I'm feeling angry.

I've also been depressed for much of my life, so that's an easy pathway to find as well. After my primary breast cancer in 2000, I had huge cognitive issues and spent a lot of time feeling really stupid. For whatever reason, that particular reaction is now the "easiest" one. If I get mixed up, I automatically assume it's me being stupid and that just leads to thoughts like "I can't do anything right" and "I feel like I'm pointless" and "why am I even here?" and poof! I'm feeling depressed.

This isn't to say that these reactions are always there, or that I stay in them because I have done a lot of work in these areas. But they are the "easiest" reactions and it takes work to pull away from them and it's harder to do that work when I'm really tired. At least I can see these reactions happening, which is a big help because then I know that my brain is just taking the easy route.

Thursday, February 23, 2017

And... done!

Whoo hoo! Radiation treatment is finished! When I got home after treatment this morning I did a song and dance about being finished radiation because I was so happy.

In all my excitement about finishing treatment, I forgot to take my morning painkiller and I am paying for that now with pain and a woogly back. It's not the end of the world but I do feel like an idiot - I can take care of myself, really I can. Really.

Today's treatment went really, really well. I didn't have to be told to breathe deeper at all and I did a great job of holding my breath. I made sure to fully relax after they got me into position, before they started treatment, and between breath holds. It turns out that all that meditation and mindfulness training I did comes in handy!

I didn't do anything crazy to relax - there was no "breathe in through one nostril and out through the other" (although I can do that). I just closed my eyes and imagined myself being heavy and sinking into the surface... as if I was lying on a towel on a sunny beach. Then I imagined the CT scanner "whoosh-whoosh" around me and imagined myself sort of rocking and floating to that noise - kind of like I was rocking in a straight hammock and on a magic carpet. Weird, I know, but somehow that worked for me.

When I finished the nurses told me that the radiation will continue to affect me and that I can expect side effects like difficulty swallowing due to radiation affecting the esophagus and fatigue. I told them about the prescription I didn't wait for and they said it would be in my file so when I need it to just call in and ask them to send it to the pharmacy. They also said to listen to my body and sleep when I need to.

I am very, very tired. Some of that is undoubtedly the forgotten painkiller, and some of it will be having gotten up for my 7am appointment, but there's a component of it that feels like radiation fatigue. I slept for a couple of hours this afternoon and when I'm done this I'll be having another nap.

My throat is also a tiny bit sore and I can feel that there's some rawness when I swallow. I'm not having real trouble yet but if it gets too much worse I'll need to get that Magic Mouthwash prescription filled.

My sternum is also very tender to the touch and hurts if I put any pressure on or near it - even wearing a seatbelt is a bit uncomfortable. I expect that to get worse before it gets better.

I'll keep you posted on how I'm doing and how much I'm affected by side effects. I don't expect to post every day but I hope to provide an update every other day or so.

Wednesday, February 22, 2017

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.

Tuesday, February 21, 2017

Only two left

Well that's one more done! Although I had some coffee before heading to the appointment I still didn't breathe in quite enough. I found that I could tell when the machine was about to stop and I'd breathe in a little more deeply before they asked me to. They said they noticed me doing that and that they thought I was very smart for figuring this out.

When I got home I did some research on this holding my breath technique and it turns out that it has a name: Deep Inspiration Breath Hold (DIBH). Who knew? There's even been a review study about it saying that it is effective. That's good!

One thing my research discovered is that some treatment centers have ways of giving visual feedback so that the patient is better able to tell when they're doing it right. The best way of doing feedback hasn't been decided. Neither has the best instruction set. But they're getting there - this is a new technique, developed in the last six or seven years, and so of course it won't be perfect. I'm just thrilled that I get to do something new.

Side effect-wise, I'm doing ok. I'm a little tired and sleeping deeply at night, but I was also up before 7am. My sternum is sensitive and hurts occasionally (especially when Gozer steps on it!). I did the manual lymphatic massage exercises yesterday and they're definitely making a difference - my hand is smaller and my sweat and other excretions smell funny. At least the toxins are leaving me :)

Sunday, February 19, 2017

Side effect check

We've definitely enjoyed the glorious and spring-like weather on our long Gozer walks this weekend! Gozer has also very much enjoyed all the smells being released from the melting snow and all the mud and dirt and thaw by-products. She has a filthy belly!

Since I am able to go on these walks, it's safe to say that I'm feeling pretty good overall. Yes, I have some pain in my sternum, but it's easily controlled. Yes, I'm a bit tired but I don't think I'm much more tired than normal.

One side effect I hadn't anticipated that has shown up is that my lymphedema is flaring up a bit. It makes sense that this would happen: the lymphatic system transports cells to prevent infection and removes waste and will be heading for the treatment area. Since my lymph fluid doesn't drain very well on the lymphedema side when I'm not undergoing treatment, it's not going to drain well on that side when I am undergoing treatment. I need to do the manual lymphatic massage exercises I was given ages ago to help the fluid circulate.

The other side effect that has surprised me is anxiety attacks. I'll be sitting there when all of a sudden my heart starts pounding and I feel scared and shaky and I want to hide. I have self-care techniques to deal with these (mainly deep breathing, asking myself questions about what I'm feeling, and talking about it) but even so I'm not liking them. Ian pointed out that the cancer is much more top ofind than usual what with the treatment and pain. This makes sense as I'd kind of put the cancer mortality fears to bed, in a way. When nothing is happening it's easy to forget that something could happen, if that makes sense. If it comes to it I have medications I can take for this anxiety but I think I'll be ok.

I haven't experienced any other side effects so let's hope things stay that way :)

Friday, February 17, 2017

And another one down

I had my second radiation treatment this morning at 8:30am. This morning's setup is getting to be kind of old hat to me now. I lie on a sheet on a hard-backed surface with my head in a depression and my hands holding the poles above my head. In the room are several lasers that project lines onto me and it's these, together with the little dot tattoos, that are used to get me lined up. To do that, they ask me to be heavy and they pull the sheet (and occasionally me) however they need to. While they're doing that, I stare either at my reflection in the radiation application machine (which is a linear accelerator) or up at the ceiling. They've got a couple of lighted panels of a garden with tulips and daffodils up there which is nice to look at.

Then when I'm in position, they take a few xrays to make sure I'm in the right place, move the surface around if needed, and give me the treatment. BTW, this video from BBC's Bang Goes the Theory gives a pretty good overview of how this type of treatment works.

It turns out that 8:30am is early for me as I'm not a morning person at all! I hadn't even had any coffee before treatment, which turned out to be a mistake.

I didn't do as well in the breath-holding department today as I did yesterday, even though the nurse said that I did much better than a lot of other people. Although I had no problem holding my breath for the required time, it turns out that I didn't expand my lungs enough and they had to ask me to breathe more deeply three times. I didn't understand what they were asking the first time so we had to stop that segment, and I ended up doing five breath-holding segments instead of yesterday's four. It's very important that I expanded my chest and abdomen the same amount because otherwise important organs like my heart will get in the way.

One reason I had trouble breathing in deeply was that I wasn't fully awake; another reason was that after I let my breath out, I developed a throbbing headache - probably due to caffeine withdrawal. Therefore, even though my next treatment on Tuesday will be at 7:30am, I must be sure to have some coffee before we get started.

Overall, I'm still feeling pretty good. Last night and this afternoon I was quite tired but that's not surprising what with getting up so early both days. This type of fatigue is different from radiation fatigue: radiation and chemotherapy fatigue feels like you've been hit by a truck and can't move, and I'm not there yet.

About an hour ago I did notice that my sternum was starting to hurt. At first I thought that the pain was all in my head but it's got worse so I think it's real. The pain is to be expected, and is a sign that the treatment is working. I also expect the pain to get worse before it gets better which I'm not terribly excited about but I'll manage.


Thursday, February 16, 2017

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. 

Tuesday, February 14, 2017

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!

Tuesday, January 31, 2017

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.



Friday, January 27, 2017

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.

Wednesday, January 18, 2017

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.

Tuesday, January 17, 2017

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.