BC Becky

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

Tag: pain

  • Not talking = not blogging

    I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

    I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

    Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

    My mouth sores got bad enough for me to ask for stronger drugs.  I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

    But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

    I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

    My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle.  The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

    Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

    We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.

  • 2nd Round of Chemo

    Today was my second round of chemo. It was actually much less traumatic than I expected it to be. It really helped that someone in the BC Connections Facebook group commented that her second round went a lot better than the first – so rather than hearing horror stories about the second round, I am hopeful that things will run a little smoother now that I understand some of the side effects that I can expect. The pains may still come, but they won’t be new, and there are things that I can do in advance of the pain to hopefully prevent it.

    Since chemo is a pretty ridiculous idea, I went for a ridiculous outfit! And of course we also needed the team selfie with our matching haircuts 🙂

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    This cycle will be 13 days rather than 14, as my oncologist wants to move me back onto the ‘normal’ schedule of Monday’s. There was no way I would be ready for chemo on day 12, so day 13 will need to do. I was kind of hoping that we would actually push it out again so I had a few more days of recovery. Oh well.

    The oncologist was also encouraged by the treatment so far. Based on his exam and his notes, he seems to think that my tumor in softer than it was – which is good (means the chemo is working). Unfortunately, the biopsy results on the third mass were not in yet, so I don’t know about that one yet. I did, however, find out that surgery should be planned for 2-4 weeks post chemo – and that it should not be delayed. This means that my Hawaii trip (see Breast Memorial) will be either the week of American Thanksgiving or the following week – with surgery the week we get back from Hawaii. I will book a follow-up appointment with the surgeon in the next week or so, so that we can get a date for surgery. Apparently, things fill up towards the end of the year. One advantage to doing it this year is that it will cost us less, as all our “out of pocket” maximums reset on January 1st.

    To avoid confusion – as I kept confusing myself – chemo day is now day 1 not day 0 – this aligns with the days that the doctors use as well. I’ve started a new chart for this cycle (adding in my exercise as well). So far it has the preventative stuff on it. One bit of good news is that I can take my arthritis NSAID anytime, they just don’t want me to take aspirin. Since the arthritis meds also significantly reduce the Neulasta side effects, this is huge for me, as it really helps. The oncologist recommended taking it preventatively, so I’ve added it to my chart as a reminder.

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  • 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.

  • This too shall pass

    Started at about 5pm last night, I felt these pulsing pains up my spine. By 8pm last night, they were excruciating whenever I was in a seated position. I was lucky that Mom was with me at support group, as she was able to drive me home. I could not imagine having to drive with this happening. I was able to be in the passenger seat with the seat partially reclined, so that I could navigate as mom got her first experience with California driving.

    I had been warned about what might happened during the Saturday support group, when one of the ladies explained it. I’m at my blood count low as well (nadir), so I’m also tired. The bone pain is caused by the neulasta, which is a white blood cell booster. What is happening is that as the chemo leaves my system, my bones start reproducing blood cells. My counts should rebound to almost normal in the next day or two. But the white blood cell booster means that my body is also suddenly producing an excess of white blood cells all at once. So the bones go from not producing new blood cells (or producing them slowly) to having a sudden growth spirt, and with that comes pain.

    The pain I have now is when I’m sitting (ironic, as I usually cannot work while standing as my arthritis gets in the way, and now I can only work while standing). I may also try going out for a walk, although it is a rather warm day out. I wish I could swim, but with my blood counts low, that is not recommended. I am also in pain if I lay down in the wrong position. So I need to be in just the right position in order to sleep. I’ve asked my oncologist for some good pain meds until this passes – just waiting to hear back. Unfortunately, Wednesday is not the best day to contact them, as my oncologists’ nurse doesn’t work Wednesday (there is someone that covers for her) and my doctor is on vacation this week, so the Wednesday nurse needs to track down the backup oncologist (who doesn’t know me) in order to get that prescription.

    If this happens next cycle, I shall be prepared for it! They actually don’t give you much other than anti-nausea meds for the first cycle, and they wait for you call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.

    One thing that I’ve learned though is that although neulasta is required for the AC regime I’m on, many women opt to not take it. The clinical evidence is that it reduces hospitalization by 20% – however if you are someone whose white blood cell count doesn’t dip too low, then it is an unnecessary precaution. In essence this is a medication that manages a side-effect of the chemo, and the side effects of the neulasta can be worse than the chemo itself. So it all becomes about deciding which is worse. What the neulasta allows me to do is be more active. If I didn’t take it, then I’d need to be a lot more careful about interacting with people during my low days, as my white blood cells might be a fair bit lower, and therefore my risk of infection higher. Since I need to interactions with people for my mental health, it probably makes more sense for me to deal with the neulasta side effects than it does for me to not take it.

    So my motto for day it, ‘this too shall pass’ … although I’m also hoping the nurse calls back soon to tell me they have sent a prescription into the drug store for me!

  • More extreme reactions

    I’m discovering that my allergic reactions to things are heighten now that I’m on chemo. I have this odd reaction to kale. When I eat it (or chard) within 24hrs I get little blisters on my hands, they start small and painful and over a day grow into blisters about 5mm across. Once they reach there maximum size (usually within 36 hrs) the pain stops and within a day or two they are gone. If I accidentally have kale in my salad or some other food item, then I usually get a couple of blisters the next day.

    Last night my hands began to blister, and not just one or two blisters, but 9 on the left hand and and least 4 on the right hand. Ouch to the point that they wake me up because I cannot spread my fingers nor clench my hands without pain. I can only guess that some of the random lettuce mixes (seeds and plants) that I picked up to grow in my box garden contain strains for kale. I am reminded that I must be extra diligent with foods that cause my body to react poorly (absolutely no tomato). My bodies negative reactions to them seem to be much more extreme as my immune system weakens a little more as the chemo starts to set it.

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    In theory my weakest time should be around days 8-10 (or Tuesday – Friday next week). This low point is known as ‘nadir‘. In many people it aligns with the days where they are more fatigued. If this is the case for me, I will be extra happy to have my mother here to help ensure that I’m eating enough and getting out for at least a little exercise (although swimming which sounds perfect, isn’t advised when you have higher risk of infection).

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