Seem like ages ago since I returned from the hospital and sat in my living room with a big sigh of relief that I actually made it home. I don't think I'll ever experience such a sense of gratitude in my life. I had to ask myself, "Did that just actually happen?! Again? Do I have nine lives?" Recovery at home has not been easy. I tried to ween off the steroids that help with brain inflammation too quickly and I almost had to go back to the hospital. Such strange neurological symptoms come up when this happens and I was experiencing imbalance and not even knowing where my left hands and legs were. Now that I've adjusted the meds properly, the symptoms have gone away and I am much better than I was last week.
Since I've been in the hospital, I have thought a lot about the last two months and how I came to come into this situation again. It's hard not to second guess my decisions along the way but I know I have to remember that everything I decided in the past was greatly thought out and it doesn't help to look back. I do know that I wanted more time for all the therapies to do it's magic but in the end, the cancer worked faster so now we have to find a different approach to gain better control of my health.
To gather a new game plan, we solicited 2 well known oncologists for opinions. Of course, both of them had differing opinions on how to treat. One wanted to go in with a harder drug to knock the cancer back, then ease off. The other wanted to start with a milder drug but do whole brain radiation which of course I'd like to avoid if possible. In the end, we decided to go with a breast cancer specialist, Dr. Gelmon, who finally spoke the plan that I wanted to hear. We saw her last week when I was in really bad shape and instead of waiting a week for a chemo appointment, we decided to start on an oral chemo pill that night right away. I knew in my gut that waiting the weekend wasn't an option because I was having difficulty sitting, standing, breathing, reading,--everything. I was completely dependent living and couldn't do anything on my own. My body needed chemo asap and even all my gurus agreed that it was time to fight back with something harder.
This chemo pill is taken everyday and works differently than the IV method just because it's a low dose that attacks it daily. You take it for 2 weeks and break for a week. Side effects so far have been minimal. I feel a bit tired and dazed but other than that, my overall functioning has improved. I can't believe I'm typing this blog because this is the first time I've typed in weeks (although this is a real exercise for my mind right now!) It has only been a week so far and we have noticed a difference in me for sure. I am also doing the oncotherm treatments with the pill which should up the efficacy but it's just a big time commitment to go to Langley 3 times a week on top of everything else. I basically have an appointment a day if I want to keep up with acupuncture and healers so I'm trying not to get over exhausted and canceling when I can.
The best thing is that yesterday, I met with Dr. G again and we finally put a plan together that I feel is right for me and not right for their protocol. Instead of jump starting to radiation this week as planned, I will remain on the chemo pill for another week since I am responding to it. Then next week, I will get a CT scan of my head to see if I will need radiation. After a couple of weeks when the cycle of meds is over, she will get a full body CT to see my progress. When we know what is working or not, we can continue with the weaker chemo or switch to the stronger one. Point is, I am going to be monitored closely and the treatment will change as needed which I am way more comfortable with than being pigeon-holed into something I don't want to do.
So I am doing better now and I will continue to get as much rest as possible and get to the healing! :)
Love, J
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