The days have been getting harder and harder. I'm not doing much more than getting out of bed and getting to the doctor. My vision seems to be a little better, but the steroids are keeping me up at night so I feel even more tired during the day. My appointments have changed again which is incredibly challenging. This week they have been at noon which means Paul leaves at 9 and comes home at 11 to take me to the doctor. Basically I shower, go to the doctor, come home and then rest. Next week my appointments will be at 10 AM which might be a little better because then they won't be right in the middle of the day. It's also a lot harder this week because the kids are off of school and so I feel a lot of pressure to do things with them and to enjoy my time with them.
My head is so sore and so laying down or sitting back hurts. I really need to start covering my head when I am out because it is just raw skin right now, but I just feel so uncomfortable in hats. I have my hair pulled over the bald spots, but I'm sure it is still getting exposure. I'll work on that.
Today my nurse caught me in the hallway and I asked when the last day of treatment is and she checked in the computer. They have it listed as April 29th which is later than I thought it would be, but I'm sure I don't have any control over that. I meet with my neuro-oncologist and have my follow up MRI on May 27th. It will be at that appointment that we will find out if I will stay on the chemo or not, but between April 29th and May 27th I'll be off of all of the treatments.
As we were told in the beginning we will expect that I will begin to feel more "normal" after radiation ends and then to expect a big dip 2-3 weeks after it is over. This is a normal response and a coping and healing mechanism of the body to rest and repair.
This past Monday I started a new devotional series about Esther and it reminded me of a weekend retreat I lead for Oxford Pres a few years ago. The theme of the retreat was "for such a time as this" which is a quote from Esther about how she was perfectly prepared by God to do amazing things. I remember so clearly telling the women that whatever moment they were in that God had prepared them for "such a time as this." I guess in many ways I do feel prepared because I have so much love and joy in my heart and I don't feel alone or in despair. However, I don't think there really is any way to be prepared or to feel equipped to go through this.
Perhaps also I can be reminded of those of you who have been angels to me, encouraging me on this journey, sharing stories of your own rounds of treatment, your own struggles with hair loss, your own encounters with radiation and chemo. Maybe the preparation I have is just the blessing of knowing and being known by so many people who are ready and willing to lift me up.
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