Tag: meds

Bone-pain – a mixed blessing

When I didn’t experience a lot of fatigue or any bone-pain yesterday, I felt it was a mixed blessing. I wondered if the reason I wasn’t feeling it was because I had successfully managed the side effects (although that doesn’t describe the lack of fatigue) or was it that the Neulasta shot that came via express scripts (mailed) wasn’t stored properly such that it was ineffective?

This morning, when I started to feel the initial twinges of bone pain, I felt a bit of relief but also a bit of concern. The Neulasta is definitely working. This is a good thing. But everything seems to be running a day late (probably because of the later in the day infusion time). This means that my day early third infusion may feel like two days early infusion, and that would really suck. So, I’m crossing my fingers that the delayed onset was really just me managing the side effects better.

In looking at my medications records, it appears I did not take my NSAID before bed last night. I highly recommend the Dosecast app (available on both Android and iOS) for tracking when you actually take medication. I can never remember what pill I took when, so every time I take something I just click the “take” button in Dosecast. I can then look up when I took what, and I can print out a 30-day summary for my doctors. So when my primary care doc asked how often I was taking the heartburn medication, I could just show that particular medication to him on my phone. Very handy.

I’ve now taken my NSAID but cannot sit until it takes effect. I’m typing this from my husbands standing desk (handy that he has it!). I’m about to go out for a training walk with my iPod – which now has Warrior by Scandal loaded on it in addition to my regular mix of Bon Jovi and Bryan Adams. My walk may turn more into a moving dance than a walk!

In other notes, I’m going bald and my eyebrows are thinning. People say “you still have your eyebrows” as it seems mostly that I am the only that notices the difference. They look manicured now, and I haven’t waxed them in years! Last night when I pulled on my sleeping t-shirt I felt all prickly on the neck. I discovered that the act of pulling the shirt over my head dislodged a bunch of the remaining head stubble and embedded in the shirt collar. I had to put a buff on my head (head scarf) before putting on a clean shirt, so that I didn’t end up with hair in my shirt collar again! What is interesting is that I do seem to have a layer of baby fuzz on my head. So the hair that is falling out is being replaced with baby fuzz hair. It looks like I have more bald patches than hair patches now but the fuzz means it doesn’t feel that way.

Apply sunscreen to my head results in a hand full of little hairs!

I am reminded with each new experience to that I am approaching this chemo thing (and cancer thing) with a sense of curiosity, and that is what is keeping me sane. Now I’m off for a walk/dance 🙂

Sat August 2, 2014
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 🙂

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.

Thu July 24, 2014
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.

Tue July 22, 2014
Mouth sores & First cycle symptoms
For the last few days I’ve been discovering what chemo mouth sores feel like. Earlier I had a few canker sores. I usually get them when my iron is low, which also happens with chemo, so I was supplementing iron which mostly kept the cankers to a minimum. Then I got a true chemo mouth sore. It is nothing like a canker sore. It formed on the side of my tongue, which apparently is particularly sensitive (ouch).

There are many mouth wash recipes on the Internet, so I asked Scott to find one and make me a mouth wash from a recipe for treating mucositis (he made it in a small nalgene bottle for me):
- 14 oz of warm water
- 1 Tablespoon Baking Soda
- 1/4 Teaspoon Salt
It seems to be working. I used it last night and this morning (and after anytime I eat) and the sores are starting to get better. I now know why the doctors ask “can you eat”, as the concern isn’t the sore itself (that is a chemo side effect, and it will eventually heal), their concern is that you are eating enough so that you stay healthy overall. Fortunately, among the odd prescriptions I got from emergency (even the dermatologist was confused by this one) was a bottle of oral viscus lidocaine (like the dentist uses before putting in a needle), which is used to help provide symptomatic relief of the mouth sores to allow you to eat. So, for this one, I was prepared in advance.

I’ve created a little chart for my oncologist (and myself to allow for planning next cycle) of my various chemo symptoms in the first cycle (if you think something similar would be useful for yourself, send me an email and I’ll send you the template – it is done in Powerpoint). I will use it when I next see the oncologist to get him to write in the preventative section at the bottom information about when I should not swim, and any other activities I should be limiting at various times, as well as when I can and cannot take NSAIDs. I’m finding that I need the visualization to better understand things – and I want to make sure that I’m not being too cautious about swimming, as it is something that I need for my mental health – especially if biking may involve blistering.
Sun July 20, 2014
In for an emotional day (maybe)

I’m happy to report that the worst of the bone pains has passed. Once the nurse called me back, she looked into it, and advised that I could take an NSAID (like ibuprofen) for the pain. I have stronger NSAID for my arthritis, so I took one of them and within 30 minutes the pain had almost completely subsided.

Yesterday was also my most tired day. I took a nap at 11am and woke up at 2pm. I clearly needed to spend the day mostly sleeping (although I did do yoga and go for a walk – albeit a short walk). Both the yoga and walk made me feel better – so as much as it is difficult to motivate at times, I know that getting out and exercising does make me feel better.

Today I get to go swimming again. The nurse explained that the bone pain is caused by the overproduction of white blood cells being pushed out from the bone marrow into the blood. Since there are a lot all of a sudden, this causes pain – but it also is a sign of the rebound. So with the pain stopping (I’m sitting writing this with no medication in me – so it isn’t the medication dulling the pain, rather then pain being finished), my blood counts should be back up which means swimming is back on the agenda (yay).

So, if chemo is day 1 (we are recalibrating to a 1 offset rather than 0 as that is what most of the health folks do) then day 11 is my rebound day. I think I will create a graph which will allow me to better forecast symptoms and see if cycle 2 is similar. If I understand this correctly (crossing fingers), I’m not in recovery mode until the next treatment, which has been pushed to Wednesday because my oncologist is on vacation. Currently, the schedule has round three moving back to Monday, but I cannot imagine going back in to chemo at day 12, so we will definitely need to put that out. I may be strong, but I don’t need to unnecessarily push myself for the convenience of someone else’s schedule.

I mention in the title that today may be an emotional one. Today I get my head shaved. If you haven’t done chemo you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments and such. So, when you have an opportunity to take control and do something on your own terms, it can be important for some people to take control. I admit it, I’m a control freak. I like to plan things and I am already struggling with my inability to plan the exact dates of our Hawaii trip because I have no clue how I will be feeling.

And so, I am taking control of my hair, and having it shaved today. Scott will get his head shaved too. We’ll take a fun selfie when it is done! I’m looking forward to seeing what it feels like to have my head rubbed, the same way I like to rub Scott’s head right after a hair cut!

Thu July 17, 2014
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!

Wed July 16, 2014
Doing Better

Thank-you everyone for your support during my meltdown phase. I know that I shall have more meltdowns, as they are a natural part of this process. I was actually getting concerned that I had not had one. They are like earthquakes, if you don’t have smaller ones for a while, you end up with a big one. I had a small meltdown during the first chemo treatment, but it wasn’t the ‘big one’ that I knew I had coming. Sunday night was much more of a big meltdown.

I’m highly aware of my emotional state and generally doing what I can to avoid depression. I know that depression is often a ‘normal’ part of a cancer diagnosis. I’ve suffered from depression before, so I know what it feels like, but also, have a sense of when I need to ask for help (or at least I think I do). I know that if I don’t re-bound, then I need to consider anti-depressants – but I’m hoping to avoid that. Shorts bouts of meltdown and crying are OK and even healthy – but if I cannot recover from them, then I know I need help. I will try to avoid anti-depressant medication if I can, but if I feel the need I’m also not opposed to taking it. It just adds one more thing to my list, and unlike most of my current medications, anti-depressants are not “as needed”, rather they require a regular regime with severe side effects for missed / late doses.

After dropping Scott off at the airport for his business trip yesterday morning, Mom and I went for a nice drive along the California coast (Pacifica to Half Moon Bay), stopped for lunch at the Ritz Carleton Half Moon Bay (a bit disappointing, so we won’t repeat that but it was still a nice visit with Mom), and then home along Skyline Boulevard (top of the Santa Cruz Mountain Range). It was nice to take a day off and do some touristy type stuff.

Today I have a dermatologist appointment (follow up from the emergency visit the other day). I’m happy to report that after a day of treatment with creams, my hands are almost completely recovered, with barely a sign of the initial blisters!

With the improvements, I’m going to go for a short bike ride this morning. I’m NOT going to overdo it. I will take out my recumbent so there is little pressure on my hands. I need the cardio in order to stay sane.

I should be on my “low” right now from a blood count level. I don’t actually feel that tired – I’m actually feeling remarkably well. I’m waiting for the ‘brick to drop’ in that some people experience bone pain when the chemo wears off and the neulesta (white blood cell booster) suddenly kicks in. So far, crossing fingers, I’m good.

Tue July 15, 2014
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!

Thu July 10, 2014
Chemo day in pictures …

Step one was to have the access placed into my port. This allows the nurse to draw blood for blood tests, but is also used for the infusion of chemo itself.

Since they need to wait for the blood test results, we had about a half hour between the blood draw and the appointment with the oncologist, so we went over for the standard tree picture. This one indicates how I was feeling.

And here is the more typical me with a smile on!

My first reaction came at all the pre-chemo drugs. I’m still not certain what they all were. Three of them were anti-nausea drugs and one is a steroid. I thought we had the print out of what they all were but I cannot find it.

This is the Doxorbicin (or the A in the AC regime). It is administered directly by the nurse. It was followed by Cyclophaphouride (C) which was a 1 hour IV drip. Although the appointment was for five hours, it didn’t take that long. I totally broke down when she brought the tubes of red stuff – but not nearly as much as I expected I would. The emotional breakdowns are inevitable.
This one was actually taken at the beginning while we were waiting for the nurse (notice the IV isn’t hooked up yet). Afterwards I was looking a little on the green side – but not feeling too bad. The steroids wore off at about 3-4 pm and the nausea started to kick in. Hope that ends today!

Wed July 9, 2014
“Wow! I hope you get it out of you soon!”

A friend said to me “Wow! I hope you get it out of you soon!”

Honestly, before I had breast cancer, I always thought that if I had cancer, that would be my reaction – just get it out of me. I find it very interesting that it is very much NOT my reaction. The decision to ‘just get it out’ is so much more complicated then I ever thought it was. There are options, and with each option comes different treatments and side effects – and I’m still waiting. If the HER2 FISH test comes in positive for HER2/neu then the decision become easier. There is a drug that has been proven to be quite effective for HER2/neu cancers that can only be given pre-surgery – so neoadjuvant (http://www.perjeta.com/patient/neoadjuvant), which just means ‘before in addition’.

One of the hopes of any neoadjuvant treatment is that it also causes the tumor to shrink. If the tumor shrinks then the surgery can be less invasive. The other advantage to chemo first is that I would know my genetic test results before going into surgery. If it turns out that I do have the breast cancer gene (or one of them), then the decision for a double mastectomy makes more sense than doing a lumpectomy and having to do additional screening/tests every 6 months (reoccurrence rates goes to like 80% if you have gene).

So the feeling isn’t so much ‘get it out soon’, it is more about how am I going to get it out, and just who scary the surgery itself is. How will I feel when I wake up.

Man I’m looking forward to experiencing some good drugs during this process. There must be a positive side to things, and good pain meds might be it! Today, I’m hoping to get a total non-medication high – sailing upwind at high speeds on a giant sailboat. When you see it sailing in the harbour it sticks out because it is on such a different scale than the other sloops in the harbour. If we are dry, we shall take lots of photos!

Sat June 21, 2014