BC Becky

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

Tag: nausea

  • AC Cycle 4

    So today was my last cycle of AC chemo (yay). In theory, the T chemo that follows has less side effects (little nausea). Brought in my new clown to show off to all the nurses. He was a big hit!
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    It turned into a long day. We had a delay seeing the nurse practitioner to get sign off on chemo – unfortunately that delay turned into a 2.5-3hour delay. Then we had another delay on the saline drip for rehydration, which caused about another additional hour. So we arrived at Stanford at 11:20 and did not finish at transfusion until after 7pm. Add in the 30-45 minute drive each way and it definitely made for a long day.

    It looks like I’ll be Stanford bound again tomorrow morning for a transfusion. My red blood cell and other related things have been getting progressively lower with each dose of AC. So, at this point they are recommending a transfusion. Apparently, any medication that would treat this would take 6-8 weeks to take effect, and the side effects are actually less with the the transfusion. However, I apparently have some anti-bodies in my blood which means that the donated blood needs to be more closely screened to match my blood. I have an appointment tomorrow morning, but the blood might not be ready – so we are to call first before driving up.

    The new blood is due to come at a time when I usually have a low – so it might turn into a real blessing – giving me more energy when I typically don’t have much. Crossing my fingers that they find a match before tomorrow morning.

    Either way, this is the last dose of AC – so worthy of celebration. 🙂

  • Changing cues

    I’ve always been highly aware of my body. I know when it needs iron, I know when it needs food, I know when it needs electrolytes. At least I used to.

    Now, I’m finding that not all my normal cues are there – so I don’t know what my body needs. I find myself tired in the morning only to realize that I haven’t eaten anything. I usually wait to eat until I feel hungry, but I’m not getting that hunger cue anymore. It is not that I’m nauseated (although that is an issue early in the chemo cycle), it is more just a loss of general appetite. My body is not signaling that I should eat. Once I start eating, I enjoy food and get more energy – I just need to remember to eat!

    So today has been a slow day. I went off to the grocery store having not eaten anything, and had little energy. When I got home, I made a point to eat, which made me feel a fair bit better. Unfortunately, I think the groceries were a little too heavy, and I lifted more than I should – such that my incision from the biopsy started bleeding a little. Rather than go out and get gas for the car, or run other errands, I opted for a nap on an ice pack – which kept getting interrupted by knocks on the door and text messages … so I shall try again … nap on an ice pack. I’m also cooking a few things up for dinner tonight and to have as food for tomorrow (chemo day).

  • 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!

  • 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.

  • Chemo day in pictures …

    Photo Jul 07, 7 28 10 AM

    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.

    Photo Jul 07, 7 53 15 AM

    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.

    Photo Jul 07, 7 53 09 AM

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

    Photo Jul 07, 10 33 47 AM

    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.
     Photo Jul 07, 10 15 01 AMThis 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

    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.

     

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