Tag: mental health

This too shall pass

Wed July 16, 2014

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!
Meltdown

Mon July 14, 2014

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.
Chemo day in pictures …

Wed July 9, 2014

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

Wed July 9, 2014

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.
Humour in the moment – which boobs should I wear?

Mon June 16, 2014

In this moment, we (Scott and I) often find ourselves laughing at things that are rather absurd, but real none-the-less. I recognize it clearly as a coping mechanism, and something that is definitely needed. But I’m also aware of how easily something funny can turn into something not funny.

I recall back in my undergrad days, one of my friends had cancer. She had cancer before I knew her, and had a re-occurrence. I did not know her well, but well enough that I remember her clearly. Last I had heard she had two beautiful children and was doing well. I mention her because of a particular story. At her wedding shower (she had recently been diagnosed with the re-occurrence), we were laughing about this or that, and for some reason the jokes turned to wigs. There was laughing at first, but then a sudden transition to tears. This is what I’m aware of every time I laugh about something. I’m aware that at any moment that laugh will turn to a cry.

Today’s laugh was about prosthetic breasts. I never even occurred to me that one would make special prosthetic breasts for swimming. They even make aerodynamic (or I guess aquadynamic) prosthetic breasts. Who knew? I was reminded of Aimee Mullins TED talk about her 12 pairs of legs. She talks about how having various legs allows her to be different heights. She talks about legs as things that allow her to specialize her superpowers (when she wants to run fast, she has special legs for that). So that got me thinking about fake boobs. You see, if I don’t opt for reconstruction, and if I end up with cancer in both then I too could have multiple sets of prosthetics for multiple purposes. I could have bigger boobs to fill out my favourite shirt, or smaller ones when I want to appear more professional. Then of course, it occurs to me, that people who saw me regularly would find it rather odd that my chest size kept changing, and how would you go clothes shopping? Which boobs would you wear? And if I were to get into competitive swimming, would the boobs I choose to wear affect how fast I swim? Would that be considered cheating?

In all seriousness, I am thankful that the surgeon highlighted that a mastectomy is a real possibly. Not that I want one (the whole idea scares the crap out of me), but that I have a little more time to mentally prepare for it. When the diagnosis is in, and the treatment options are presented, I will be better prepared to make a decision. I at least will have had a chance to explore the options. It never would have occurred to me to search the Internet for breast prosthetics. My fear of being ‘lopsided’ does have some solutions – but frankly, given that I hate wearing bras, I’m still dealing with choosing between two bad options. Reconstruction means more surgery, more complicated surgery, and more healing time. No reconstruction means a life of prosthetics (at least for formal settings).

On a related note, Scott and I went for a walk around Sausalito on Saturday. I notice that I was looking at other women’s breasts. I had never really taken notice of other women’s breast before – but now, I find myself drawn to them. I am looking. I’m not even sure what I’m thinking when I’m looking, but I am certainly finding myself drawn to look. It is all very odd. Perhaps I’m admiring? Perhaps window shopping? Who knows.
How do you prepare to lose a body part?

Sun June 15, 2014

When the surgeon told me that most likely I would need a mastectomy I did not really internalize what that meant. When a new friend mentioned that it was like an amputation, that in some ways helped me see the scope of the surgery.

It becomes even more real when I think that this could happen soon. It will likely happen soon – like, within the next 2-3 weeks. By July, I will likely not have my left breast.

One of the things I need to think about is reconstruction. The state law says that insurance companies must provide coverage for reconstructive surgery after a cancer surgery. So, I have the option. The decision needs to be made before the mastectomy as it affects how the surgery is done.

One of my first thoughts when I heard mastectomy was that I did not want to be lopsided. I didn’t like the idea of having one breast – of course, this was before I found out that there might be another malignant tumor in my other breast. So, with that, I might actually end up with bilateral surgery. One thing that plays into my decision is that I HATE bras. So, wearing a prosthetic to make me look even doesn’t at all sound appealing to me.

So, I can logically think about what I want, and how this might play out, but I cannot emotionally prepare. I have no idea even where to begin with the emotional side of this decision. How does one even begin to prepare to lose a body part?

[Correction: The law pertaining to insurance companies covering the cost of breast reconstruction post breast cancer is actually a federal law – The Women’s Health and Cancer Rights Act of 1998]