Tuesday, February 12, 2008

Pain, Part 2

I hit a new low this weekend. The grief was almost intolerable for me to endure; I think some of the shock is wearing off. We are approaching the six-month mark: on February 16th, it will be six months since Katie passed away. It might also have something to do with the fact that David was sick for 10 days, and I was worrying every day.

How do you care for someone who is very sick? The answer is probably as individual as the patient, and as the caregiver. I will give you a clue about how we did it for Katie; since I am in my late 40s, and menopausal, I used a detailed calendar and a chart, and a notebook. That's how compulsive I am about not making a mistake. Here is what I did:

Yes, I actually traced some of the items that we needed to use, and made a diagram so that I would lay them out in that pattern and not forget anything. Then, since I was trained as an artist, I used a color-coded list, and after that, we recorded everything in a little spiral notebook, so we could look back and confirm what we had done, and relay any information to the medical team, if we needed to tell them details.

Caring for a patient in the post-chemo days is complex. There were many medications needed for different purposes (anti-nausea meds, antibiotics, antacid, anticoagulant, immune-system booster, etc.) some for several days after the chemo, and some every day. There were injections needed 2 and 3 times a day, and we were responsible for drawing the medicines up into the syringes and giving her the shots. Some things had to be kept in a locked refrigerator on a different floor of Ronald McDonald House, necessitating trips (with a key) to that location. Other meds were kept in our room, and they had to be given in different amounts, at different times of day, or on different days, with different preparations. We also maintained her PICC (central) line with medicine to keep it working. There was also her feeding tube, liquid nutrition and the pump that delivered it to manage.

Things were simpler when we came home after her surgery. Not simple, but simpler, and this summer, things got even simpler. No more shots, no more chemo. Just a few medications and the feeding tube, with trips to the Hematology-Oncology clinic at Children's for labwork. A scan was scheduled for August to keep an eye on a couple of spots that gave the doctor concern for Katie's future.

When we learned that the cancer was back in full force, and that Katie was going to pass away, we got a quantity of new medications to help her be comfortable and take care of the symptoms, especially pain. I kept the meds in 3 boxes, each with its dose and time of day labeled on its container in large type (to fellow office-supply geeks: I love my P-Touch labeler). At that time, this is what I was using:

Each color on the chart represents a medication, given one, two or three times a day; our notes are the scrawls in between. We kept track of any changes in her condition and noted how the meds were working, so that when the hospice nurse came (twice a week), we could confer about how to best help Katie.

Last week, when David was so sick (and not getting better), I had some bad flashbacks to the onset of Katie's illness. Each day when he showed little or no improvement, I walked the path leading up to Katie's diagnosis, when we had also been told that she had a virus, and it would resolve itself with rest at home (she didn't improve, and more tests were ordered, over a 3-week period). Every time I ran upstairs in response to David's call, or took a tray of food to him, I emotionally walked the same footsteps of the summer days when Katie was dying. I found myself charting his illness and care, too:This type of tracking, learned when Katie was ill, may be part of why the situation was aggravating my grief. I couldn't stand it anymore on the 9th day, and took him back to the doctor, who ordered a CBC. It turned out that his WBC count was elevated, which raised more alarm in me, but the doctor took it as a sign that perhaps he might have developed pneumonia. We took him in for an X-ray of his lungs; they were all clear, by grace. For some reason, after that, he began to improve, and yesterday, he went back to school. I am grateful for his return to good health, yet I was left an emotional mess, and then the grief came over me in a way that was almost debilitating: exhausting, emotionally and physically painful...and I found a new low.

Gregg has had some back and leg pain since his drive to and from Winthrop for the wedding. On Sunday, after doing a bit of yardwork, he was in such pain that he couldn't find relief, even with 2 types of pain medicine on board. Yesterday, I took him to the clinic, and we found that he has a pinched nerve that will only heal with time spent resting it, which means that he cannot sit up or drive a car; he can only stand up or lie down. We are still working on the pain management, but at least he was able to get some sleep last night.

I am adjusting to the fact that this is life. We were always a pretty healthy family before last year, and certainly none of us got sick while Katie was in treatment and recovery. I am trying to remind myself that people get sick and injured, and they get well again. It's just that my nerves feel raw and inflamed, and my heart is quite tender and vulnerable right now.

1 comment:

Sis B said...

I saw your comment at one of Brainhell's sites, and I wanted to come over to offer my condolences and some comfort. I have not (yet and hopefully never) lost a child, but I lost a brother in my teens and have been along for the journey of others losing those close to them. I can't imagine how difficult it must have been to care for your son and relive so much of the horror of your daughter's illness. Writing about it is one of the very best things you can do. Experience all of those feelings--ALL of them--anger, grief, sadness, laughter, relief.... don't feel guilty about anything you may feel at any point. In my experiences, the worst thing you can do is deny yourself the emotion. It can and will ALWAYS come back to hurt you later. Like they were talking about at ratty's--it comes in waves. Let them wash over you and then recede. Don't fight them. One day you'll find yourself on the shore again. I promise.

If you would like to talk about anything, or have the perspective of a sibling who lost a sibling, feel free to drop me an email. It's hard for parents in this situation to understand the needs of their surviving children. I saw this in my own family and in two others who lost children at the same time.

You're doing a great job. You will survive this.