BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: sleep

  • Day 3 is just plain hard

    Today is day 3 and it is a hard day. It was a hard day last cycle too. I am thankful that there will only be two more cycles of AC and that means only two more day threes.

    Why is day three so hard? The neulasta pains are crazy. It isn’t a new kind of muscle pain – pain from the inside out. It hurts to swallow but it isn’t a sore throat. It is the muscles around the throat and the neck that all just plain hurt. And this makes me feel sad.

    I walked this morning, and I even biked a short bit this afternoon, but that didn’t seem to prevent the pains – although it was nice to get out – it is also very hot outside today – so I am thankful that we have central air!  But it is still hard. It is a day a sleep a lot and watch TV a lot …

    The biopsy on Monday means I couldn’t swim today, so I missed my magical afternoon swimming with my clothing on. I will not allow anything to disrupt that routine next cycle as I think it is one of the things that helps me get through it. I’d also like to do Reiki on day 3, but my Reiki healer is away this week, so I don’t see her until Tuesday. Hopefully, she will be in next cycle.

    So, now I know, day 3 is hard, but it is just one day … tomorrow will be better.

    The good news today is that we finally got some of the scheduling figured out. There was a mix up on the schedule for chemo, so they had the wrong type listed for the second round. So, now I know my last infusion date is set for November 17th.  So, surgery will be either December 10 or December 17 (I need to decide which date to have them hold). So, Hawaii will be the week of December 1st … something to look forward to …

  • Variable days

    I’m finding that my days are rather variable. If you ask me mid-day if it is a good day, I will likely have a different option than in the morning or in the evening.

    Sunday is a good example. I woke up early, unable to sleep. I wrote a blog post, but then I found myself feeling tired and generally not feeling great. So I decided a needed to climb back into bed. I decided to cancel sailing because I just could not image driving to San Fran, sailing for 2.5 hours, and driving back. It was more than I could mentally handle.

    After another 2 hours sleep, I awoke with a crazy headache, took Tylenol and had a cup of coffee. That inspired another ’bout of writing. I wrote several blog posts on Sunday! Feeling energetic, I went for a bike ride – 31 km on my road bike – to be fair, my road bike is my easiest bike to ride, so 31 km on my ‘bent is not the same as 31 km on my road bike – but still, it was a solid 90 minutes of riding. It felt great to be back at my pre-chemo strength. That evening we even walked over to the bank (6.5 km) – more than I thought I’d be able to do when we set out (I figured I’d turn around part way).

    So, looking at the morning would not have provided insight into just how my day would go. I’m finding this to be a bit of a trend. I can never tell how well the day will go.

    This morning started with an MRI guided biopsy of the small mass in my left breast. This was not 100% necessary, but recommended in order to allow maximum flexibility when it comes to surgery. I also just want to know. I feel like three is my number – it is the number I use to meditate, the number of strokes I count when I swim, the number of bikes I have – it resonates with me.  I have three masses in my breasts, two have proven to be cancer. I want to know if the third is also cancer, and if the third is the same kind of cancer. If it is, it just means that something when crazy in my body and spontaneously cancer grew – it is not a sign of spread – as with this type of cancer, it is each one growing at the about the same time.

    After my last MRI experience (weird machine), I knew a lot more about what to expect. I asked for things to help make myself more comfortable during the procedure. I took a Lorazepam just before the procedure, so I was mostly dopy and sleepy throughout – much better than being stressed and claustrophobic – although this MRI machine was different – it was much bigger and had open sides. They get you positioned, put you in for a scan, roll you out, put in the needle based on the images, roll you back in and scan to make sure the needle is in the right place, roll you out to do the biopsy, move the need for the marker, roll you in to check that things are in the right place, put in the marker (a little piece of metal in the shape of a M), then roll you in again for one last image of the marker placement. Then after they bandage you up, they ship you over to mammography for a gentle mammogram of the marker – as a baseline reference.

    I requested all the images back when I requested the original MRI images, so I should receive them in the mail sometime in the next couple of weeks.

    I found myself so tired on the drive home (after we stopped for lunch) that I actually slept in the car. When I got home, I slithered into bed and promptly slept for 3.5 hours. I guess I needed that.

    This evening I’m feeling good. No real pain from the biopsy. Even managed to get some work done. Tomorrow is chemo prep day – so need to get to bed soon so that I am well rested for the various errands that need to be run prior to chemo and the following less productive days. Unfortunately, the biopsy means no strenuous activity for 3 days and no swimming for a week. We shall re-visit that with the oncologist on Wednesday, as I will really really really want to be in the pool on Friday if I have the same reaction to neulasta. I got the OK on sauna use from the MRI doctor (radiologist) who also said if things are healing well I may be OK for the pool on Friday (one week is the party line but not everyone needs the full week). So cycle two won’t align with my ideal exercise plans, but we shall go with what the body wants/needs at any given time. It is what it is.

  • A new visualization

    Didn’t sleep well last night and I’m feeling like I’m not get in enough biking, so decided to go back to bed and then go for a bike ride this afternoon.

    Sleeping, I had this crazy dream. I was in my parents back yard (except it was a lot more elaborate with a tiered swimming pool. The yard (as well as the one across the path – interesting the path was like the back yard in Kitimat) both had kids drinking, doing drugs, and swimming in the pools. It was a wild party (for some reason the gates were low chain link and they didn’t have locked doors). I came down and started yelling: GET OUT, GET the F*$K OUT, going from person to person. They were being difficult, moving along slowly, but I kept yelling. I went to use the phone, which looked more like an ear cleaning syringe thing (see image):

    Only I talked to the bulb end and said “call 911” and put the other end in my ear. I got a message (sort of like Siri) saying “sorry we cannot help you right now, we are busy doing something else” … I screamed … and then I woke up.

    It had me thinking, the pool is sort of like a metaphor for my body, and the uninvited guests partying and making a mess of the pool and yard are like cancer … and I was screaming “GET OUT, GET the F*$K OUT” …

    It might prove to be an interesting visualization during my next chemo treatment … not exactly little pacmen going about chomping on cancer cells (although that worked conceptually, I didn’t really buy into it) … not completely sure how this visualization would work …

    We’ll see, either way, it felt good to yell, even if it was just in a dream …

    and now for a cup of coffee!

     

  • The pill app and post chemo day 2

    So being the mobile geek that I am, I figured there had to be an app that would be useful for tracking when I am taking various medication as they all have very different durations, and when you add in all the non-prescription medications and chemo brain, it becomes impossible to track in ones head.

    The app that I’ve found to be useful is called Dosecast. It is listed as free but is pretty useless without the $3.99 in app purchase to premium. I can add any medication I want to it. I don’t have to have reminders – since much of what I take is as-needed I don’t want to be burdened with reminders. With the premium I can get a summary of what I have taken and I can email that summary and print it out for my doctor. Scott has some grand plans to do some kind of graphical analysis for my doctors, but I’m not holding my breath.

    We are both rather scattered at the moment – after both having very busy days. After my morning swim, I had a few online meetings and ran a bunch of errands, and had a couple of doctors appointments. The first was to get my California Marijuana card – which doesn’t do much for me until I get a California ID (ugh – this involves lines at the DMV, so I may also do the written portion of my drivers license at the same time) – the second was the follow up with the genetic counsellor who I am happy to report confirmed that I do not carry the known breast cancer genes (BRAC1, BRAC2, CDH1, PTEN, STK11, or TP53). This is very good news.

    To add to our crazy day, they were testing the fire alarms from 4 – 8 pm, which was driving us both crazy. Scott has more conference calls tonight, and I shall soon sleep. I’m starting to feel the effects of either the chemo or the neulasta – so general achiness and one-by-one each of my muscles are starting to hurt like I’ve over-exercised them (started in the abs and has now moved to shoulders and neck – I think this is because I injected the neulasta in the stomach). But, no fever, so that is good. Sleep will likely be the best medicine for me this evening. I do hope to have energy again in the morning, just need to remember to take it easy in the afternoon, and remember to eat!

     

     

  • Day 1 – I had to give myself permission to nap

    In all my pushes to make sure I’m getting enough exercise, I had lost sight of my need for sleep – or a least a little more sleep than I usually get. I got quite a bit of sleep last night, but by 2pm I was knackered. I had to realize that I should stop pushing myself and just take a nap … so two hours later I woke up feeling refreshed.

    We managed to get all the crazy stuff sorted for the nuelasta shot, and I now have it sitting in my fridge. We will do it when Scott gets home – as I don’t want to be alone. I’ve taken the recommended allergy meds (in my case Reactin) and an NSAID – which were both recommended by my oncologist.

    I am finding that the advice via different people is very variable. Nurses tend to provide advice on the extreme side of things (absolutely no alcohol, no swimming, no biking, etc). They tend to provide advice based upon the worst case scenario, but also discount the mental health benefits in the treatment. The need to exercises (bike and swim) are important to my mental health, which is just as important in my healing. The Oncologist was good – he explained the chemo cycle – and said it was OK to swim the first week, but as my counts get low to stop swimming until the counts return. He said it was OK to have the occasional glass of wine, but don’t get fall down drunk cause they are worried about low platelet leading to excessive bleeding. So, there is a period in the middle when infection is of greater concern then otherwise, and that is when I need to be careful – I don’t need to be overly careful of the time, especially at the cost of my mental health.

    In other news, one of the packages I received yesterday was my new RoadID. These are shoe tags that say who I am and provide emergency contact information. I added to these that I’m being treated at the Stanford Cancer Center, which would provide EMS folks with enough information to get my medical information in the case of emergency. So, when I’m out biking, I now have a road ID tag for each pair of my shoes. They sent me an extra one because of a mixup in the order, so now I need to decide where to put it. Might add attach it to my purse.

    I’m not sure yet if the chemo smell is still something that I’m experiencing from the inside or the outside. Scott doesn’t have a strong nose for scents so he doesn’t really notice. I decided to wash the bedsheets and anything I wore yesterday, to see if the smell clears. I know I’m not at the 48 hour mark yet, so I could still be excreting the smells, but i figured washing the sheets couldn’t hurt.

    I do notice the flavour of things having changed and this can be directly related to the smell. I sent Scott out for a bottle of ginger ale (Canada Dry to be specific as that is the specific brand that I like). Turns out it tastes nothing like ginger ale – almost revolting actually … hopefully I’ll get those taste buds back in a few days!

    I think the nausea is starting to abate a bit. I’m controlling it, but it isn’t pleasant. Yesterday, I certainly felt the crash after the steroids from the pre-chemo treatment wore off. By about 5pm I was dragging and feeling flu-y. I’m going to have to learn that when I feel that way, I should just nap for a couple of hours (assuming my temperature is OK) it often coincides with more nausea which is also helped by sleeping, as it may be the new way my body has of telling me it’s tired.

     

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