What can I say about the retreat itself? The next week would be full of long chats with other women with metastatic cancer knowing exactly what it's all about, nurturing meals all made with fresh ingrediants and lots of love, mornings started with Qigong/meditation where we would wake our bodies and set our intentions for the day, intense sessions which I was always amazed would unfold in magical ways, restful afternoons to choose what we needed most in that moment for ourselves, relaxation sessions where we were tucked in to our cozy nests where we could just breathe and feel whatever would come up, evening council by the fire speaking our truths about the day, playing guitars and ukelales, singing songs...... I could go on and on about all the amazing things that we did and the realizations that I was able to have from being away and taking this time. So grateful that this was made possible for me. I learned so much from these other woman about living with incurable cancer and what that means.
I was very fortunate to not have any major side effects from the chemo while I was away. I started just the day before I flew out and two days into the retreat I started with the rash on my face. Getting a rash is the most common side effect of this drug so I was not surprised when this happened. My sister, thankfully, had sent some cream along with me which really came in handy. When I returned home and got settled into life again I seemed to get sicker and sicker. The rash spread from my face down my entire body until I was covered from head to toe. I was started on a steroid cream and some Benadryl and this seemed to ease things a bit. Almost as soon as I got this under control I started having some pain in my legs. Then the fever, chills, night sweats, racing pounding heart and that's when I knew it was time to go in and see someone. I was trying to ignore this for a few days but was pretty sure I was getting some sort of infection. I tried getting out for a long walk, going shopping but nothing was making me feel better. Friday night I was really worried that something horrible was going to happen in the night so Saturday morning I went in to Emergency. Jeff was taking Gavin up north for a hockey game so my sisters both came with me. I have to say that I was very impressed with the care that I immediately received there.
My fever continued and after every test under the sun it showed that my blood counts were not good. My white cells were way below normal and I was neutropenic. Which basically means that my immune system was shot and I was very vulnerable to infection. My chemo was immediately stopped which I was not happy about. That was one of the reasons why I did not go in sooner. I was worried about them having to stop the chemo. I accepted the fact that it had to be done. I was also started on an antibiotic since my symptoms were all showing that I had some sort of infection. I was happily sent home with the advice to stay away from crowds and sick people until my blood work improved. I spent the next several days resting and seeing improvements in my energy level. I was pretty exhausted so was sleeping lots during the day. Then the rash which I still had started getting worse. I went in to see the doctor on Wednesday and when I saw my dermatologist she knew right away that I actually had two rashes - one from the chemo and one from the antibiotic. Yikes!! So I had a reaction to the antibiotic and that was just making everything worse. I was taken off everything and told to watch my temperature closely. It turns out that all of the symptoms I was having could have been from the chemo. Maybe there was no infection? My body was just really reacting to the chemo. So now we will wait for a couple of weeks until things stabilize in my body and we will retry the chemo at a lower dose. It turns out that maybe it was just too much for me. I am looking forward to my usual doctor returning from holidays since of course when this all happens he's gone and I'm seeing someone else that I've never seen before. That doesn't help matters.
So that's what has been going on around here. The kids have been extra worried about their mom and not liking that I havn't been feeling good. Now that my energy is coming back they seem to be more settled. It really does effect how they are dealing with things. I'm just glad that they can open up and share how they are feeling so that we can talk about it and they can see that things will get better. Jeff and I have always been very honest with the kids about what's happening. I want them to know that we are not keeping anything from them and that they are very much a part of things. I have learned over time that if we don't share things with them they just fill in the blanks on their own and usually come up with some worse scenario.
I've really been noticing in the past couple of weeks how beautiful the snow looks. While I was out for a walk through Quarry Park last week I really noticed the sun reflecting off of the snow making it look like diamonds. I felt like I was walking on millions of packed diamonds. I could see each snow flake shimmering on the ground. When I got home I noticed in our tree out in the front yard just a few tiny icicles hanging on the branches and how beautiful they were. It's strange how feeling unwell has made my eyes open and made me able to see all of this beauty all around me. It truly is amazing! I'm not sure if it's that I've slowed things way down since coming back from retreat or the need to focus on some good because it makes me feel better. But whatever the reason I'll take it! Hope you can all take the time to enjoy what is all around us! xo
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