Another palliative care RN arrived and performed Satomi’s last official blood draw. The RN had a hell of a time with the veins in her left arm. Since it was only a draw, we all agreed that the risk was minimal so she pulled the blood from Satomi’s right arm. It was relatively easy.
This RN was a breast cancer survivor so she was quite sympathetic to our situation. We discussed Satomi’s specific problems and she was quite forthcoming. Maybe a bit more than she is suppose to be so I’m not putting her name here.
The RN warned me about Satomi’s position. She said that brain stem tumors are very positional and lying flat could put the body, spine, neck, and head in a position that could put pressure on the brain stem which could trigger a seizure or worse. This could explain the seizures we had on the radiation table and her insensitivity to all the anti-seizure and swelling drugs. She warned me about allowing Satomi to sleep with her head unelevated. It could compromise breathing or other autonomic brain function. Its dangerous but the simple fix is to elevate and support the head.
She explaned that the “canal” that contains the brain stem and all cranial nerves to the spine is very narrow. It is conceivable that the shift of cerebrial fluid from an upright position to a lying position is the primary inducer of Satomi’s dizziness-Smooth, slow, and careful movements is definitely better for her condition. The issue then becomes her strength. From experience I know that a common remedy for weakness is momentum-Meaning you throw yourself up into position or fall down onto the bed. That maybe good for weak muscles but it is nothing but bad for sloshing brain juice. The RN agreed with my conclusions. When we move her, we’ll have to do more to support her.
Blood pressure changes will also effect both of these things. High blood pressure can cause soft tissue to expand and squeeze nerves while low blood pressure can starve organs especially when standing up or sitting down. Satomi’s blood pressure was a verified 76/60 and is a clear sign that she is dehydrated. We immediately increased her fluids. The obvious problem becomes more potty trips. It’s a vicious cycle.
A fall could be terribly painful or even fatal. With these risks it sounds more and more prudent to use a hospital bed and minimize her movement. I’ll have to talk to the hospice people about it on Wednesday.
As most of u may know, I had breast cancer in my right breast and had a bilateral mastectomy with right lymphectomy where they took out about 30 lymph nodes from under my right arm so BP, blood draws, IV are at high risk of causing me some lymphedema! Today, an RN came to draw my blood to check my dilantin levels for brain swelling! I hadn’t used my right arm for anything -blood draws, BP or anything since my surgery in 4/2008 so since the nurse couldn’t get a good left vein draw, I opted to try the right arm! So far so good! I had used my leg vein about a year ago for my vertebroplasty but it was really painful! Hopefully it was a good draw! No swelling in my right arm yet! I had some swelling about a year after chemo in my right arm but it went away afterwards! Keep ur fingers crossed!
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Sean and my mom have been waking me up for me to take my meds, eat breakfast/lunch, take more meds so I don’t forget since –
I get headaches from the swelling if I don’t take the steroids and now that they took darvocet off the market my headaches come on stronger if I don’t take my steroids on time but hopefully the swelling will start to subside a little now the rad is done! I am also going to start accupuncture to help with the swelling, too!
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It’s my first day back at work and I think I’m getting an ulcer. I feel like I drank a gallon of milk. All you lactose intolerant folks out there know what I’m talking about.
I composed an instruction “packet” for Satomi’s Mom to administer her medications. It’s full of pictures and arrows and simple language. At first glance, the packet seems to be very condescending but I have been told that it’s what’s necessary to minimize confusion. I pre-filled her pill-box so it should be easy.
The tricky part will be her changing medications. The packet I put together is only good for today.
Satomi’s out of Darvocet so we’ll first try Tylenol with Codeine and then Vicodin if necessary. We’re also going to start weaning her off of Decadron. It’s going to take weeks. Satomi’s anti-seizure medication will be changing too once we get some blood test results back. It is fair to say that the type and number of pills are changing daily.
I plan to make a new “packet” whenever there’s a change but we all know “change” breeds mistakes.
I have to go to the bathroom…
As Satomi wrote, she had visitors today. All agreed that she looked pretty good. She even walked to the bathroom nearly on her own. Satomi was so happy to see her friends and “read” about their lives. She had a lot of energy. It was so good in fact that I had to ask myself, “…is she really that sick?”
After dinner I had my answer-Satomi was just exhausted. On a trip to the bathroom she slowly climbed down from the bed and stood still for a minute. I noticed that her toes started to contort, followed by her knees bending and hips swaying unstably. To be safe I gave her a bear hug, dragged over the bedside toilet with my foot, and sat her down. As ususal, she yelled at me-She doesn’t like to be handled.
This was her first time using the portable toilet for “serious business”. She did not seem happy about it at all. I’d imagine it’s embarassing and a bit humiliating. Instead of talking about it, I just joked about passing out from the smell. She laughed so things ended ok.
I was surprised that she was this tired. She had been so uppity just a few hours before-I guess it was just too much activity for one day.
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