I was rubbing Bio Oil on my scars and holes this morning, amazed at how well they are healing. I realized that six months post-surgery, my outside is looking not too shabby by my non-vain standards. I am sure they would still be startling for anyone who has not witnessed the transformation to this point. I keep wondering how my insides are doing as they had many more recovery requirements. I wonder how much my little liver has grown and if everything that was sliced and spliced is healing as best it can. Of course, it is hard to ponder much during the chemotherapy sessions because they demand most of my attention.
These days I feel as if I am chemo-crabby. I am so done with having to receive these treatments and am now in countdown mode. I have four left and each one gets more challenging. The side effects have intensified and I am giving in to sleeping much of the day of chemo. I find that the next couple of days are rocky. Usually I have several good days though–good being relative to a state of mind and not a physical sense. I am not a whiner or willing sick person. Nothing has frustrated me more than not being able to will myself to feel better. I have lived with a lot of physical pain in my life but this year has taught me about surrendering to the needs of my body simply because nothing I can do or take seems to shift the fatigue or the other symptoms. I jokingly said the other day that I was feeling crappy but positive…and then said positively crappy. After surgery every effort I made meant a step towards health. Now, it does not matter what I do; I will just keep getting sicker until the treatment is over. It is ironic really.
As always I find myself grateful for the prayers that continue to be lifted up on my behalf. They do keep me going. The other day a friend asked me what she could do and I thought it might be interesting to see if she had any tips from her many contacts that might make this chemo more bearable. She asked if she could post something anonymously on her Facebook page which she did with my permission. Lots of people gave great ideas and I did learn a couple of helpful tips.
I have written here before about some of what has been helpful to me and I thought maybe at this point it might be helpful to do it again, specifically related to the chemo treatments and its effects. First and foremost, nobody chooses chemo happily. We do it because we hope that it will be the cure or extend life. We know how devastating it is on our bodies. If there was another guaranteed way that had similar proven results with less trauma, we might make a different choice. I am grateful for the people who have respected my decision and not caused me more angst for choosing this route.
Secondly, for me personally, the best gift to me is prayer. I do not care really if you pray to God, the Creator, Yahweh, Allah, or the Divine Presence as you know the Holy One in your life. I accept all of these prayers and acknowledge the love they embody. The simple prayer of thank you–for being with Suzanne, holding her, comforting her, blessing her–is sufficient. No fancy prayers are needed. Thank you is enough. In this Year of Mercy, I find that I have begun to pray for mercy. I am still learning what that request might fully mean.
For those who want to extend mercy to me, the ways are countless. I have been quite specific about my food needs with the friend organizing that piece. The key the dietitian tells me is eating protein with every meal or snack. Even boiling eggs can be tiring for those who are preparing meals for themselves so bringing someone deviled eggs or egg salad is a treat. I have a particular group of folks on muffin duty as I have said before as this usually helps when I cannot think what I want to eat but need something healthy. Taste buds can change and appetites may fluctuate so eating can be a chore. I never thought I would dislike chocolate and ice cream the way I currently do. I am assured that is temporary.
Staying hydrated can be a challenge for me personally as I have never liked to drink. Smoothies, bubbly water, herbal teas, soups, and kefir are helpful to boosting fluid intake. Dropping off baskets of teas and other fluids is easy and beneficial to help flush the toxins from the body. Cutting up watermelon and dropping it off is another way to increase fluids.
The chemo chair is a very individual experience. When I started I was much more alert and did not mind company. I find myself now just wanting to pray and rest through the infusion. I see others doing the same. The cocktails vary as do the side effects. I often see other patients dozing even if someone comes with them. Watching the others in the chairs can be a sad experience and not everyone can hold space for you so choose carefully what you need. A chatty Cathy might be perfect for some, but right at this juncture, it is not what I need. I enjoy chatting with the nurses sometimes, but more when I go in for my blood work and dressing change. If you choose to accompany someone, be aware of the needs of that individual over your own.
The chemo chair is not always private either. I have had a couple of melt downs in the chair. The second infusion prior to getting my PICC line was incredibly painful for me. I am still not sure what occurred but something happened to my vein and even though I have a fairly high pain threshold, I could not tolerate the intensity of what was going on. I was glad to not have someone with me to witness that. Other times, I have been very grateful to have a person with me. We overhear things in the chair because of the close proximity to the other patients and we cannot un-hear them. If you accompany someone, be prepared to be part of a community that is strong, courageous, and trusting. What happens in the chair, stays in the chair.
I had been told to use a salt or baking soda rinse for my mouth to keep it healthy. I learned about sesame oil as an alternative and that does seem to do the trick. Another person said she found that drinking cold water in the chair helped to lessen sores. Yet another person suggested sucking on hard candies that are flavourful to do away with the metallic taste.
Accept that I know what works best for me. Despite what everyone tells me, including the real experts, it may not fit for me. I heard time and again that I should not throw up. Well, a few weeks back, I did and I panicked because everyone said this was not good. So I started popping the anti-nausea pills. I even had the on-call oncologist order a different one for me and I took them as directed without reading the side effects because they seemed to help. By Day 3 I was still in bed and still feeling nauseous so I thought I should check what I was taking. Yup, not so helpful to me after all. When I stopped taking them, I felt so much better and realized that vomiting may have been exactly what my body needed to do. Pay attention to your body and trust it to know what it needs most of the time.
Let me give in to rest. I am a doer. I am not a person who likes to lounge around and be sick. I still drag myself out of bed each day to get certain things done and I try hard to get out of the house once a day at least. I am also learning that has consequences and so need to choose carefully if I go to that event then I may not be able to do something else. Napping is key to my survival and sanity. Honour that I may not always have the same energy I have had and respect that I may need to rest more than usual. I would probably love to chat but sometimes that takes more than I can give.
Help me to continue to do life-giving activities. I may not always get to this blog, but I try to even when I am tired because it connects people I care about to me. One new activity for me is colouring books. I find them calming and a good distraction. I feel as if I am doing something beautiful and filling my soul with peace. I still do spiritual direction because I can see God’s hand at work and it pulls me out of me and my needs. I hate that I have become such a self-centred person in my illness. I am working on this while being self-compassionate about my needs which may seem incessant and all-encompassing to others. Encourage me to laugh, to talk about other things than my treatment and its effects, and to keep doing activities that I love as much as I can. Engage me in mentally stimulating conversations. These are all really helpful.
Drop me lines of encouragement. I love getting cards and emails from dear ones who are thinking of me. Some days when I am feeling a little down–and yes, I am human so that happens–these words can lift me up. Flowers and other thoughtful gifts can brighten a day. Chemo can strip away resilience so any small gesture that reminds the patient that they are not alone is a blessing. It does not have to cost anything–a brief email with loving words is sufficient. Do not take it personally if I do not respond. Please assume that I am grateful and that you have most probably made me smile.
Remember boundaries will be different for everyone. Chemo and the accompanying illness makes me vulnerable. I may not want you stopping in unannounced because I have not had the energy to clean my home or I may be napping. It is said that grief rewrites your address book and I am finding that true now too. People have been amazing on so many levels and my inner core circle of those who are accompanying me are a huge blessing. Not everyone is in that circle though. Do not assume that you are in any particular circle. As much as I want this experience to be somewhat public, I can only be so vulnerable. I won’t always be able to explain why one day I draw boundaries one way and another day, the lines have shifted. Be patient with me.
The hour is late and I should head to bed. I hope that some of what is here helps with people in your life who are going through chemo. If there is anything particularly helpful to chemo patients, drop a suggestion in the comment section. I know I and the readers would love to hear it.
Reflect on a time when you had to re-establish boundaries. How did that make you feel?
What acts of mercy can you do for someone today?
You are my shoulder to lean on,
my Light in the dark,
my Joy in the confusion,
my Rock on shifting sands.
You alone are Holy.
May you be praised forevermore.