Stand up

fall down stand up eightWe begin our busy day at the University of Iowa. Today Kevin is in for a long day of tests and procedures. He’s currently getting another PET scan to show whether the cancer has regressed and how it’s responding to current treatments of Mekanist and Tafinlar. This takes about 2.5 hours. The Mek/Tafinlar combination is working fabulously at slowing the progression of the melanoma, and even reducing subcutaneous lesions, which are visibly smaller. The PET scan will show how things are progressing systemically. This treatment is temporary, and Kevin’s dose has already been reduced once due to side effects which can be extremely dangerous. So, we hope he can continue with the treatments for as long as possible. Once these meds fail we will continue to seek Anti-PD-1, or he may be well enough to go through Interluekin-2 treatments, or Yervoy. But these last two are very difficult and can cause significant organ damage. Our biggest hope is that no melanoma has spread to other organs, such as the heart or liver.

Most meds do not cross the blood/brain barrier, so the lesions continue to spring up in Kevin’s brain, albeit at a much slower rate than before. Brain cancer is very common with metastatic melanoma. They think this is because melanoma travels via the bloodstream, or outside of veins. Once it gets to the left ventricle of the heart, it often goes immediately next to the lungs. The brain is an ideal place for melanoma because brain tissue (oddly enough) contains melanin, the cells which are mutating to form melanoma. Unlike many other brain cancers, melanoma grows independently of brain tissue and moves things around. It is quite contained and relatively easy to spot. Since brain metastasis can be deadly, it’s critical to treat this before all other areas in Kevin’s body.

So – next on our to-do’s for the day is brain radiation for 3 new lesions. The stereotactic procedure is what he’ll be doing – same as before. We were a bit concerned he’d have to do whole brain radiation, but apparently there are no more new tiny lesions – so that’s good news. Each lesion takes about 45 minutes to radiate. Brain radiation – or any radiation – will cause extreme fatigue, so Kevin will sleep for 2-3 days and have very limited activity. In some cases he can experience seizures or brain swelling, so I have to pay close attention for the next few days. I’ve read over and over about what to do in the event of a seizure. Hopefully I will keep calm and do what’s necessary should it occur. Kevin’s noticing some side effects from the radiation – such as forgetfulness. The areas in his brain where the lesions are do not cause some of these changes – we asked about that. We think it’s from the radiation, so this will likely have similar effects in a few weeks or months. This also is a statistical side effect from radiation.

Once that’s done we meet with Kevin’s oncologist to (hopefully) hear the results from the PET scan, and to find out whether he will need to take a break from his meds to recover from radiation. We also hope to hear whether the Anti-PD-1 test is available to him.

I, on the other hand, have inconveniently developed a nasty spring cold just when I need to care for him after radiation. Very bad timing! I also am worried about spreading germs to others here whose immune systems are compromised. Later, while in the oncology unit, I plan to wear a mask or wait elsewhere. NyQuil is nice, though. I slept like a rock.


Health insurance will be a concern in the next few months, as my COBRA runs out in July. We had a snafu with the Healthcare Marketplace, aka “Obamacare”. I had selected, but hadn’t yet activated a policy. For some reason neither the system or any customer service reps could change that status. Mom called the White House and was told to contact a senator. She contacted Senator Harkin’s office, and they called me and told me what to do. I am supposed to wait a couple of weeks, lodge a complaint so a change will be made in our status, then select the correct insurance in late May. The first policy I looked at didn’t seem to cover his meds, so it’s critical we select the right policy for our needs.

I continue to work from home. This is ideal for our unpredictable situation, so we hope to have insurance via Obamacare, rather than me working off-site. While many days Kevin is fine, we never know from day to day when a bad day will happen, which makes me (as caretaker) a particularly bad and unreliable employee. He’s had a good, somewhat active stretch tho – thanks to the meds. Most days Kevin is awake, working on pottery at the Ceramic Center, where he works on thank-you gifts for the many people who are helping us (none have been given out yet, but he’s creating quite a collection!). Sometimes he’ll do a little fishing. He becomes exhausted from the normal stuff he did, but these light activities are doable and good for the soul.

His sculptural abilities are really something. While I’ve always admired his artistic opinions, foam sculptures and bronze sculptures, I can really see how his ideas create some stunning, enviable work. I find myself often saying “Oh! I want that!” and thinking ‘I wish I had thought of that!’ more times than I can count.



Spring is finally here!

Only in Iowa do you hear a weatherman justifying there has only been one April in recorded history that it didn’t snow. I wore sandals yesterday and today a coat. (Probably why I have a cold!). Today it will be in the 40s and snow later in the week. Boooo.

Since we’re getting very serious about being vegan and eating organic foods, I have begun some seedlings for veggies and lavender, and am reading about companion gardening. This makes very good sense to me, and is a fascinating idea. It’s a long-ago practice to plant certain plants with others, and create a mixed garden for the health of the plants. For example, I always plant marigolds with tomatoes and roses to keep away aphids. I also noticed my strawberries hate this arrangement, so I need to move them. Apparently, apple trees do much better when their trunks are encircled by chives, whereas grass around apple trees can compete for the roots. This whole system has to do with various chemicals given off by the roots, leaves or blossoms of various plants and how they interact with others. I like this idea. I much prefer to have my garden growing happily with other plants, rather than an organized, segmented formal garden. The only thing I hate is poison ivy, of which we have much.

After we moved out of Kevin’s shop our yard is full of junk. Leftover scaffolding, a john boat, a ladder. There’s a lot to do to get things in shape, and I’m excited for warm weather to get started!


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