- She and I spent most of the day on the 17th together…talking, laughing, and sharing what’s going on with us. We went for a walk on Mentor Headlands beach and worked together to get a large UPS shipment prepared and over to the UPS depot.
- She gave both Susanne and I wonderful massages. She’s just graduated from massage therapy school and passed her national boards so she really knows what she’s doing.
- She learned how to do my IV connections, which helped free up Susanne from that a bit. And thrilled her to learn something that was part of her Dad’s healthcare.
- Susanne took the opportunity of Leah being here to retreat to some friends’ home for the better part of a day of vacation. They also made one of their cars available to her as well, which was wonderful.
- She and Susanne had a wonderful time working together making homemade soup from chicken broth.
I attended my second support group session at the
- On the 18th, the last piece of my head incision was not looking right to Susanne so we made a trip to the hospital for the nurse to look at it. They found a last lingering piece of suture in place that they removed. We decided this was not a crisis…just a brief urgency…and the suture letting us know it was time to come out so the incision could finish healing.
- My son David had been having severe headache reactions to the chemotherapy he started a couple weeks ago. When his left eye swelled up, his wife took him to the hospital. He was admitted and immediately went into surgery because they detected a blood clot near his former tumor removal site. He went into surgery late afternoon and was in recovery by about 6:30 PM. At this point, indications are that he came through the surgery well.
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The rest of the story…
Retreat Day (September 17)
This morning I was thinking that my life has become all about stressful responsibility punctuated by moments of stark fear. There are brief moments of joyful relief when I actually do something that doesn’t relate to Craig’s cancer diagnosis. But mostly it feels like his illness has become my life. Nothing feels like a total escape.
We watched a movie for light entertainment a couple of nights ago. But, I was watching to make sure I laughed and noticing that Craig didn’t laugh much. Humor is supposed to generate endorphins and healing. Cooking and eating are all about organic and antioxidant and cancer fighting. If we go out to socialize, the topic at some point comes back to cancer…or the whole evening is focused on it. I even kissed him today and noticed he seemed dehydrated.
I’ve run away from home today for a few hours to have a break—really the first one since Craig’s diagnosis in mid-July. Craig’s daughter Leah arrived last night and they are spending the day together today. So, spending time at our friends’ home out in the country will lower my stress level I hope. And…while driving out here I popped a CD in the car player and it was all about the soul…oops, thinking about death not a good thing for stress relief. Then I was remembering all the things I forgot to bring: slippers, sunscreen, hat, ulcer medicine, peace of mind. Part of the challenge is that I’m never completely “off duty”. Even out here, I’m on call. Craig and Leah won’t call unless it’s urgent…but that possibility is in the back of my mind. (And I’m answering my friends’ phone every time it rings! There’s no cellphone service out here.)
I have started to pay more attention to caring for myself as the caregiver recently—doing more exercise like walking and swimming, natural remedies, Chi Gung meditation, acupressure, consistency with prayer times… One of the patterns I’ve noticed is that I tend to not do something that is self-care if I think that it would be selfish to do it on my own because it would also benefit Craig. I really wanted to take a long tub bath the other night…we have a deep bubbler tub. But then I thought he’d want one too, and our hot water heater only does one tubful, and I didn’t want company in the tub that night. So, I just let it go. I ran errands recently and rewarded myself with 15 minutes sitting on the grass near Lake Erie and enjoying the sun and waves. But I kept thinking about how being there would help him too and maybe I should have rearranged things so he could have joined me. He’s not so self-centered or selfish as to begrudge me self-renewal time. So, the issue is more mine than his.
The literature about caregivers talks a lot about depression statistics. I know I’m struggling with feeling sadness, grief, anger, frustration…all the normal emotions for being in this situation. But…then that becomes grounds for guilt. Craig needs me in positive and happy mode all the time. So, self-care is helping. Most of the literature though just has reams of stuff on how to take care of the patient well…I’m having fewer problems with that! Fatigue is an ongoing challenge too, particularly on nights when sleep is disrupted. The last few nights Craig has woken me up because he’s scratching his head so hard that the bed is shaking. I turn on the light and rub some herbal cream into his scalp to calm it down. [We identified with a recent For Better or for Worse comic about itching www.fborfw.com/strip_fix/archives/002691.php.] Last night, the disruption was Craig doing a saliva sample during the night. I find it difficult to go back to sleep immediately.
Craig and I have always been fairly well balanced between us on the introvert/extrovert scale, although he’s always been more social than me, and I’ve needed more alone time. We are trying to line up others to take him out so I have time alone too. Part of my problem is that I’m running on very low reserves, so I have to really stretch to be okay with any social encounters that last longer than a short time. He loves days that are filled with one activity after another. For me, it just becomes exhausting.
I was trying to remind myself this morning that the responsibility for Craig’s life is primarily God’s, then Craig’s, and then mine. But there’s this driver inside of me that says I have to do my part of it just right or there will be some awful consequence. So, my service to Craig is significantly out of love, but there is a key element of fear. One of the many things that make caregiving easier is that Craig regularly expresses appreciation. I know that he is grateful for what I’m doing for him (even when the whole grain organic bread I’ve served him tastes like thin cardboard!). I’m grateful that we’ve had some time in between the initial surgery and the intense treatment where Craig’s mind has been clear and communication has been possible. We’ve been able to get legal and financial matters in order and come up with emotional, spiritual, and physical strategies to maximize the opportunity for Craig to heal.
Hours later…I’ve had writing time, preparation for an evening radio interview, a nap out on the lawn under the trees, a healthy lunch, reading time, lots of water, a walk, visits from deer/chipmunks/squirrels/birds, and lots of quiet. This day has been such a blessing.
And…a good preparation for more challenges on Tuesday (September 18)! Neither Craig or I were totally sure whether I should react about his head by getting him down to the nurse in the surgeon’s office. I was relieved to have not made a fuss for nothing…there really was a good reason to go. The whole family energy then later took a nosedive with the news about David…lots of concern about his wellbeing.
It was wonderful to have Leah in for the two days…the first time we have had her by herself for awhile. One of her key projects while here was starting to document the cancer history in the family so that it’s available to both Craig’s and David’s doctors.
Instead of attending the talking support group in the evening at The Gathering Place, I attended an art therapy session going on concurrently. It gave me an opportunity to create two paintings/drawings, one depicting “Surviving the Crisis” and one showing me as struggling to do love, growth, and spirituality while being surrounded by cancer.
Hi Susanne,
Your comment sounds so familiar to me, I remember the exhaustion, the fear, the not wanting to socialize because it took too much out of me. I remember when people used to say "if you ever want to talk, let me know" and I would think "I don't need to TALK, I need some help picking up organic groceries, or making juices, etc. etc.". I felt guilty doing anything for myself. I am so proud of you for recognizing these issues and doing your best to work through them. I would encourage you to take care of yourself, this time is incredibly difficult for you. I'm not sure what else to do to offer my support, but I am praying not only for Craig but also for you. Sending you my best wishes, my positive thoughts, my support, and my prayers.
Anne
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