BC Becky

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

Tag: marijuana

  • 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.

    2014-07-09 12.21.43

     

    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.

  • 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!

     

     

  • 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.

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