Category: active treatment

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.

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).

Sat July 12, 2014
The Colour Pink and a memorial celebration

I find the reaction to the colour pink interesting. You see, I’ve always liked wearing pink, but not breast cancer pink (or as my reiki healer today called it Pepto Bismol pink). Since my diagnosis, I find it interesting the different reactions other people have to the colour pink. Mostly, it is a complete aversion to the colour. So, I thought I’d announced, I’m not against pink, just please not Pepto Bismol pink). I really like dark deep pinks (as well as greens and blues).

This morning I was thinking of the memorial post that I made to Puffie – on our Going East bike trip, we had a bag stolen. Of all the things in the bag, the one loss that I felt was that of our mascot Puffie – a stuffed Labrador puffin that we bought a the L’Anse Amour lighthouse. It got me thinking of memorials, and how they help deal with loss.

I found myself wondering about (and craving) a memorial for my breasts. I wondered what others had done or if my thought of creating some kind of memoir was a totally crazy idea? I asked on a couple of breast cancer social media groups that I’m part of. I received a variety of suggestions for parties with catchy names (boob voyage) that all seemed to involved booby cakes and lots of alcohol (made me miss my girlfriends back in Ottawa). They were more in line with they’ve had a good life celebration before they are sent off.

The response that really struck me was a truly heart felt post from a fellow blogger who is probably about my age, who created an art piece the night before her mastectomy. I really feel for women have children, whose emotional ties to their breasts relate directly to feeding their children as infants. I cannot say that I have that same bond, but I still feel a need somehow to do something before they are gone. Maybe its just something trivial like swimming topless in Hawaii (not sure its legal, but I’m sure an exception could be made) … I now have visions of a photo shoot. Scott with the new Go Pro camera, taking pictures of me swimming topless with the sea turtles and snorkeling around the amazing corral reefs in Maui. Maybe we will even charter a sailboat to take us to a nice spot, not full of tourists. A place to say a last goodbye. Sounds like heaven.

Sat July 12, 2014
Post Chemo day 3

Today was a mixed day. It began badly – actually it was more that last night ended badly. I was feeling pain in a way that I had never felt before. It is difficult to describe. They sometimes call it bone pain, but I would not call it that at all. It was like all my muscles (mostly in my abdomen head and neck hurt. My throat hurt – but it was a sore throat – rather it was the muscles around my throat hurt when I swallowed. Yuck.

I was bummed that I couldn’t get the marijuana (MJ) yesterday. You see, I could get a license, but the dispensary we want to use (one that actually measures and labels the dosage of all items it sells) requires California ID and I don’t have that yet. They would not accept any other proof of living in California. So, I have on my to do list, when I’m feeling up to is, a trip to the DMV to wait in line forever to get a California ID. I tried scheduling an appointment, but all appointments are in August! Unfortunately, I wasn’t feeling up for it today. We do have an alternative. My husband can get a caregiver card, and since he has a California Drivers license, he will be permitted to go to the dispensary and buy stuff. Dispensary isn’t really the right word – it is actually a collective – and they include education on what exactly you are getting and various recommendations. For the side effects of chemo, the drugs you are looking for aren’t actually the THC (which causes the high) rather it is another drug. I took this picture in the doctors office. I’m actually looking forward to being permitted into the dispensary so that I can actually learn more about it … in the mean time, I’d be happy with a few truffles that might help me sleep without being drugged up prescription pharmaceuticals.

As the day progressed, I began to feel better. I think I really just needed to talk to a friend or two. I spend a couple of hours on Facetime and Skype talking to friends and that definitely helped ease the pains. I think also the Sudafed (pseudoephedrine HCl) helped – glad I had some – as far as I know you cannot get it in the US without other stuff like Tylenol mixed it. *** You can in Canada. It mades me a little spacey but it cleared up the fogginess in my head. I also walked over to Safeway to pick up Claritin (and took some immediately). They say that Claritin is the best thing to counteract the pains associated with the neulasta. We had asked about whether Reactin would work and were told it would. I can sadly report, that it did NOT. So adequately drugged up to counteract side effects, I’m feeling OK now. I check my temperature regularly to ensure I don’t have a fever.

The one thing I felt this morning is that I really wanted a reiki treatment. This was interesting. I’ve had reiki a couple times before and didn’t really feel like I got much for it, but today, I craved it. I just wanted to feel that healing touch. I couldn’t get an appointment until tomorrow, but now I know. Next cycle, I will pre-book an appointment for the day after neulasta (or maybe even two appointments) just to help it clear my system.

Instead, I went for an afternoon swim with my clothes on. As I’m sun sensitive, swimming in an outdoor pool in bright sunlight is a bad idea. So, with my clothes and swimcap on, I’m almost completely covered. It was magical. And the feel of my wet clothes against my skin had the effect that I was hoping for in the reiki treatment I couldn’t get. With each stroke across the pool my shirt and capris gently massaged my skin in the slightly salty swimming pool water. It was magical – and exactly what I needed. I found myself floating and kicking in snorkeling position, head down blowing bubbles. Next time, I hope to have the new Go Pro setup, and then I can take videos of the patterns on the bottom of the pool as I swim around. Anyways, you get my point – it was the magic that I needed for a day that didn’t begin too well.

I think more than anything, with the new pains in my body, that reality is starting to set in. I am powerless against some of these pains, and that is difficult to accept. It is also that the sensations are new – so I don’t know how to react to them – I don’t know what I can do to ease the pains – and popping yet another pill isn’t exactly what I want to be doing – but yes, to those who have asked, I am taking my anti-nausea meds pretty strictly.

My outlook at the end of today is better. I do hope I wake up tomorrow feeling a little more energy – need to get the apartment ready for my mom to arrive on Saturday 🙂

*** Although this is what I believed at the time, it is not true. The medication is available from the pharmacist, you just need to ask and show ID.

Thu July 10, 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
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.

Wed July 9, 2014
Negotiating identities in multiple worlds

I find myself living between two worlds – or perhaps more – negotiating my different identities.

Anyone who gets breast cancer under 45 is considered to be ‘young’, so I’m re-negotating what it means to be a young cancer patient. In church, we had groups for young adults age 18-35 and I remember the very awkward transition that happened as I could not relate to the younger group. We ended up starting our group of 30-40 somethings that allow us discuss spiritual and life issues in an environment we could relate (eg. kids, career orientated jobs, mortgages, marriages).

With the cancer groups, I find that professional I relate to the 55 ish old women. These are women who have established professional careers (consults, or other professionals). It is a peer group that I can relate to – however, I don’t have the same kinds of cancers they do. I find that when they hear of my cancer it scares them – because is it not what my first surgeon called “old lady cancer’. They have slow growing cancers with life expectancy outcomes in range of 95-98%. They are the survivors.

The young cancer group has so much more to detail with, in many ways. They usually have more aggressive cancers. They are often raising young children (or early teens). They have family obligations and concerns. Some have great support but others are just amazingly powerful women that just power through cancer treatment without asking for help from their families. From this perspective. I’m not that strong, or perhaps a little wiser. My bike trip (http://goingeast.ca) has shown me that people want to help – and sometimes it is better for the people in your lives if you can provide them with concrete ways to help.

I do find that my empathy levels for others has increased. I worry about how my fiends and family are adjusting. So, although I may blog a lot about myself and how I”m feeling at a particular time, I do it with a worry about how others will feel when they read it. What will help others understand.

I often find myself forgetting to send out thank-you to those who have sent cards and well wishes. I want to say that I really appreciate everything that has come my way – I just cannot keep track of it all, nor track down everyone to say a personal thank-you. But I do want to say it hear. I greatly appreciate all the support and kinda words I am getting. I hope my short thank-you is enough for you to understand that you too are in my thoughts and heart.

Tue July 8, 2014
The pains with the American system

Having decent insurance has made most of the process of cancer treatment go smoothly. You’d have thought with a week of advance notice, it would all be figured out … but not so much.

The chemo went well today – well seems like an odd word to use w.r.t chemo – it went, I’m feeling a little stressed (just took something for that). Don’t think I’m feeling any nausea, but I’m not sure if worrying about nausea is causing nausea or if I’m actually feeling nausea .. so we will wait until the anti-anxiety meds kick in and then decide if I need / want another anti-nausea pill. I have several options, so all is good.

Talked to the oncologist about medical marijuana. The oncologist didn’t see any problem with it, but he couldn’t write the prescription (against Stanford policy). He did warn us of dosage issues – in that you often cannot accurately measure the dosage (very dependent on where you get it). Nor can my family doc – although my family doc suggested I see one of the various “pain” docs who do write the prescriptions. It is a bit of a game, but we have followed the rules so far. Next step is to find someone to write the prescription. Some of the docs that write the prescription also issue “cards” which is all you need to purchase marijuana at one of the many local dispensaries (indicated by a green cross) – however, there is also an official card that one can get from Santa Clara county for $150 after the doctors note. Some dispensaries/collective actually test the stuff to make sure they label the dosage correctly – others, not so much. Honestly, right now we are just setting things in motion, so that if it becomes needed it is an option. I’m worried about the side effects of the anti-anxiety drugs (they can be habit forming) – so alternatives might make more sense. We’ll see.

On the other side of things, I’m supposed to get a neulasta shot tomorrow – which is used to boost the white blood cell count. My insurance company won’t approve me going to Stanford for the shot – rather, I’m supposed to do it myself. It is a subcutaneous (in between skin and fat) injection, which is similar to how one gives insulin, so Scott is rather familiar with the process. My chemo nurse at Stanford gave us a lesson on how to do it. It is actually going to be more convenient for us this way, as it means that Scott can give it to me after work, rather than having to take more time off to drive up to Stanford for a simple needle.

The problem is getting the actual medication. Stanford put the order into my pharmacy but the insurance wouldn’t go through (the neulasta shots are about $4000 each). So they called Stanford who tried to get it approved, only to be told that we needed to make the request (so it couldn’t be made on behalf of us), we called, to be told that there is no pre-authorization, so Stanford needs to call to do the pre-authorization (and get an urgent pre-auth done). Once we hear that the pre-auth is done, Scott needs to call back Express Scripts and have a supervisor do an override (which may also need insurance authorization). Once we get the override, then our local pharmacy can fill the prescription. However, this all needs to happen before 8pm tonight as the pharmacy doesn’t stock neulasta, so they need to order it today so that it arrives by mid-day tomorrow.

If we don’t get the insurance approval until tomorrow, we will need to find a pharmacy that actually stocks neulasta (either Stanford or hopefully one at the Palo Alto Medical Foundation, as they are closer).

One way or another it will happen … just a lot more drama than I would have liked. Not sure why this pre-auth requirement didn’t surface sooner as they have known for over a week that I was starting chemo today. But, as the saying goes, ‘it is what it is’ … we shall deal with it.

Mon July 7, 2014
First day of chemo

So today was day 1 of chemo. It was a little emotional when she pushed the Doxorubicin (A) – they closed the curtains when I started crying – but the emotions didn’t last too long. The A only took about 10 minutes (three vials).

While they were doing it, the person across from me was serenaded. When you have your last treatment, all the nurses get together and sing you a goodbye song “hey now your chemo is done”.

The Cyclophosphamide (C) takes an hour via IV drip bag. I don’t notice much except the smell. Even with the saline I notice a smell. It is kind of weird because it is a smell that comes from the inside of my nose, rather than something outside. Very odd.

I am very thankful that Scott is here. He has been refilling my water bottle and retrieving random things from my bag, so I can sit back in the lazy boy and relax.

So far, so good.

Mon July 7, 2014
Joining the cancer blogosphere

I have been blogging for a few weeks now, but I have been very hesitant to read other people’s cancer blogs. I’ve been hesitant to reach out to too many others who are going through similar experiences to mine. In part, this is a form a denial, in part it is a form of fear.

I have strong online relationships. I am part of several online communities where I find strength and much needed support. But, to join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.

But I also realize that I need them. I need to read about others experiences. I need to learn from them. I also need to share my experiences, so that others can learn from me. It is this need that is driving me to participate in the online communities (and face-to-face support groups as well), but I must admit, that I do it with hesitation and a bit of fear. Afraid to get too close to anyone who I might lose.

Sun July 6, 2014