Category: chemo

Meltdown

Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part. I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

Mon July 14, 2014
Guilt

One of the interesting feelings that seems to be shared amount those who go through traumatic life experiences (cancer / sudden tumor), is that of guilt – particularly of guilt when you are feeling better or when you are in the presence of others who are sharing a similar but different experiences.

One of the ladies I was talking to at a cancer group mentioned that she was feeling a little like a ‘chemo dropout’. She had a bad (life threatening) reaction to chemo, and because in her case the chemo decision wasn’t so clear (the benefit was marginal) it was clear after the first bad reaction that she would not be continuing with chemo. There were several of us in the room just going through the first cycle of chemo, so she expressed feelings of what I can only describe as ‘survivor guilt’.

I was talking to another friend last night who also went through the traumatic experience of having a tumor removed surgically, and the reconstruction associated with it. However, in his case, the tumor had no cancer – so although he went through a lot of the same experiences – he isn’t considered ‘a survivor’, because he didn’t have cancer and that label, somehow, seems to be required. He also lacked support groups and all the other infrastructure that is in place for those with cancer. But also, he is lucky in that he does not need to deal with the constant fear of re-occurance. So, he has survivor-guilt because he survived but wasn’t as sick as others.

That comparison, that need to be part of the group, and yet the recognition that each journey is individual provides a conflict. There will always be someone who has it easier, but also someone who has a much more difficult time of it. When we are together to sharing there is a bond in that shared experience, but also that twinge of ‘guilt’ when you are doing better than someone else – also a lot of feelings of empathy – tearing at my heart strings – when I see others that are doing much worse – but also personal joy in that I am doing as well as I am. Such a mix of emotions.

I’m not sure that this post is really concluding anything, but making interesting observations about the pull of emotions that is going on right now as I enter my low blood count days (chemo nadir). I’m looking forward to the rebound.

Mon July 14, 2014
So a little more detail …

My post this morning was a little rushed, so I missed a few interesting details. The big question for everyone was why is this happening on my hands and not anywhere else. Most people who have this complication see it on hands and feet or hands/feet/mouth. Several doctors were looking for other locations for the sores, and not seeing any.

It was the on-call dermatologist (happens to specialize in chemo related derm complications so I picked a good night to be in the ER with this issue) that made a comment about ‘motor biking’, that had me saying – on Friday morning I went for a nice long (1hr+) bike ride on my folding bike. The blisters started about two hours after the bike ride. Of my three bikes, this is the one with mountain-bike style handle bars. And that is when the ah-ha moment came. The bumping associated with riding (I do wear gloves but still) didn’t align well with day chemo+4. There is a range in the chemo cycle where I’m more susceptible to this type of thing happening, and any trauma can set it off. The places on my hands where the blisters are align with sweat glands – and trauma to that area when my body is expelling chemo drugs can cause this toxicity effect (at least that is what I currently understand).

She asked if I had been warned about this complication – not that I can think of. That being said, many of the warning have been overly cautious and lacking details. Telling me not to ride or swim is useless, but telling me that I shouldn’t ride an upright bike on days 4-8 is a lot more useful (I now know this is when the chemo is leaving your system, so toxicity effects are most likely) and telling me I shouldn’t swim days 8-12 is also useful (this is when blood counts are low). The overly cautious recommendations would have me sitting on the couch watching TV the entire time – which is actually contra-indicated – exercise has been shown to improve chemo effectiveness as well as decrease side effects. So, I am looking forward to a discussion with the dermatologist on Tuesday where we can actually go through the best times and worst times for specific activities in order to reduce the likelihood of a re-occurrence in the next cycle. I’m also kinda happy that I’m presenting an interesting case for at least one of the doctors at Stanford 😉

Sun July 13, 2014
Not without incident

So my last post on more extreme reactions didn’t exactly get it right. With the blisters still progressing I called the on-call oncologist who didn’t think it was related to the chemo. The location of the sores and my comments about allergic reaction sent her on the wrong track. I took a couple Benadryl as suggested and observed; however, the blisters continued.

After picking up mom and going to support group, I decided it made more sense to stop in at emergency at Stanford than drive home and call the oncologist again, who mentioned that they would need to be seen if the problem persisted. We figured that it was a good idea to check out the emergency procedures anyways, while I was happily ambulatory and not “really sick”, just in case I needed the services at a later time.

After five hours and consultations with the internal medicine resident, oncology resident, on-call oncology fellow, dermatology resident, and on-call dermatology attending (who happened to the be the director of oncology dermatology) it was diagnosed as a reaction to the chemotherapy (Toxic erythema of chemotherapy). What had put people off of the diagnosis earlier is the atypical location of the blisters and the fact that I was doing so well otherwise. They were worried about Steven-Johnson syndrome (SJS), which would have been more severe and would have required IV corticosteroids.

So after five hours we were off to a pharmacy to pick up some creams to help with the symptoms. With this, they treat the symptoms. They don’t change the chemo as it is not considered a severe enough reaction to warrant a change. Unfortunately, the emerg folks at Stanford have out of date information about 24-hour pharmacies, so they sent us to a closed pharmacy. We decided to just go home and deal with it in the morning. In the mean time, ice and the cream I use to numb my port are keeping me sane.

Sun July 13, 2014
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