I got the Christmas cards ready to go today; I am hoping to have them in the mail by Wednesday. I decided to use the last sketch that Kevin worked on. He drew it in February of this year. He had to resort to drawing instead of painting; his range of mobility was just too restricted. I recall how frustrated he was by his inability to hold his arm up to paint on his easel. In December, Kevin had started a large oil on canvas, 36″ x 36″, and he was determined to finish it. He ended up using a variety of chairs, easel angles and just basically took his time. He finished the painting in January, and at that point picked up his sketch book to give his arm and shoulder a rest. We didn’t know it at the time but the bone cancer was literally throughout his entire body.
He managed to do two more pieces in February: a sketch that I used for this year’s Christmas card, and a small watercolour in a sketchbook. For both of these last pieces it was a push for him; on most days he would work about 15 to 20 minutes and then take a break for an hour or two – then he’d be right back at it. The physical effort was huge and he would be quite sore, even though it didn’t seem like much effort, it was for him. I walk by his studio and I can still see him in my mind’s eye. Hunched over at his table, surrounded by jars, books, paper, paint brushes. He worked best in chaos. I’ve left his room intact. I’ve tidied it up a bit, but not much. It’s just too early and too hard to even try at this point.
So as I prep this year’s card I wonder at the fact that the sketch I use is one of the last pieces Kevin drew – painstakingly, deliberately. The image is simple, but when I see it, the numbers of figures in the card match the number of members in my family, children and grandchildren. The central figure is like the phoenix rising from the ashes. I wonder if there isn’t a subliminal message there for all that knew him. He may be gone in one form but, perhaps, has taken shape in another. Fanciful I know, but believe me, when you walk this path you find that you look for small wonders and small mercies.
It is one month since the blood clot became part of our cancer journey. The clot was quite sizeable so it is no surprise that it will take some time for it to dissolve – however, we had hoped that most of it would be gone by now and it is not. My husband’s blood clot was from his ankle to his groin, as a result his left leg swelled up significantly and became quite shiny. It is still a significant size. The blood clot appears to be slowly dissolving, with the top of his thigh to his knee showing the most marked reduction. The calf/shin and foot have improved marginally. However the swelling is still very apparent, for example, if he crosses his ankles or his legs the indentation that results to his left leg makes it look deformed. Needless to say I am relentless in making sure he doesn’t cross anything!
On his left leg the purpura and petechiae are still quite vivid. There has not been a significant change in their appearance. The front of his shin is covered from knee to ankle, and the petechiae has spread to the back of his heel. This is the only area that it has spread to since it developed, and I wonder if this is a result of putting on/taking off his shoe on that foot. We had been told that any bumps, pressure or knocks to his skin can result in more discoloration and purpura. (The petechiae is rash-like in appearance whereas the purpura present as purple spots under the skin.) His skin on the left shin and foot remains quite tender to touch.
Once again, it appears that we are playing the waiting game for these ailments to go away. The blood clot seems to be taking its time, and any reading I’ve done on the purpura/petechiae suggests that it will go away somewhere within 6 to 8 weeks. Just seems to be one thing after another.
Yesterday was a good day, no doubt about it. My husband was busy, busy, busy. Up and down the stairs getting things, sorting things out and just generally enjoying being able to putter around. He was more animated than he had been in weeks which meant he was providing an opinion on just about everything – which really wasn’t necessary. He went to bed last night more optimistic than he had been in weeks. Having a small degree of his mobility back means so much to him. He was able to do things like have a shower, get the binoculars out to watch the birds, make me a cup of tea, answer the phone when it rang; little things that we don’t think twice about. These small, inconsequential, mundane things are the things that gave him such pleasure yesterday.
And then we come to today. When he woke up his left leg was a little tender. This is the leg that has the blood clot. The blood clot is quite sizeable – from his groin to his ankle. It has been just over three weeks since he started his injections and it has taken some time to see the swelling go down. Today is different. The leg is down considerably, however, it is also covered in a red rash which is quite painful to touch. There are also a couple of dime-sized discolorations under his skin – like blood blisters. The whole thing is alarming to look at. I contacted the visiting nurse and gave her a general description of what was going on. She decided that she would stop by the house just to take a look at his leg and the rash. The nurse was reluctant to provide an explanation as to what was going on, since she herself was not certain. Her suggestion was to contact our doctor’s office and let the doctor know what is happening. We did this and now are waiting for a call back.
Despite this bit of a curveball my husband still had a pretty good day today. Just give him a good day once in a while and it provides him with a world of hope. Being able to gain back some autonomy (as he did yesterday), was as good as a shot of adrenaline which has lasted through to today. I can only hope that this latest episode with his left leg is at best minor, or at the least very manageable, it would be nice to sustain his present upbeat outlook.
This is a preloaded injection that is given daily in treatment of the blood clot.
Part of the ongoing treatment for the blood clot my husband has in his leg is a daily injection of dalteparin sodium (trade name of Fragmin®). Same time every day, likely for the balance of his chemo treatment and maybe a bit beyond. Every day a needle to his belly. He could use another part of his body, but he already uses his thigh for his insulin injection, so the belly is pretty much his only choice. And in case you haven’t seen it the preloaded Fragmin® needle is not a small needle, it’s big. Needless to say it hurts but the benefit it provides outweighs the pain. He needs the injection but do we have other choices as to how it is delivered?
Today I had to renew his prescription and I called in to the Pharmacist. I inquired about the size of the needle for the preloaded Fragmin®. The Pharmacist stated that with the preloaded syringes it only comes in the one needle size. As an alternative the Pharmacist indicated that we can get a vial of the Fragmin® and load (draw up) our own injections, and if we do, then we can select a smaller size needle. Some people may not be comfortable with drawing up their own injections, but in our case this is absolutely the way we will go. We have to try it to determine if a smaller needle will reduce some of the pain and discomfort associated with the injection.
This is where consumer feedback to the manufacturer is needed. First of all, why can’t they preload a number of doses into a single pen in the same manner as insulin? This would save on packaging as well as allow people to select their preferred needle tips. Hell, they can develop their own tips and make more money on the product even. Secondly, has anyone at the manufacturer injected themselves in the belly with this needle just to understand the degree of discomfort associated with it? I suspect they trialled it and assessed the drug for its effectiveness – not the delivery mechanism. However, if the present administration of the drug causes pain that can be alleviated through a product adjustment, such as the delivery mechanism (in this case the needle and syringe), then the manufacturer should be responsive to consumer needs. Obviously this is one suggestion that I will be forwarding to the manufacturers at Fragmin® in the immediate future.
Well it has been two weeks today that we went to the hospital with his blood clot. It has definitely been slow going. His leg and foot remain quite swollen and it is still painful to walk on. It’s taken a toll on him emotionally. Yesterday he was quite withdrawn and quiet. It was apparent just looking at him that he was feeling down. The visiting nurse came by to flush out his picc line and she chatted with him. He had hoped that his leg would be visibly on the mend and that his mobility would have improved by now. She reminded him that it was likely to take upwards of two months for his blood clot to disappear completely. Looking at his leg you can see certain parts where the swelling is going away, but it isn’t going fast enough for him. Today he woke up with a nasty headache and I have to think it is all related to how unhappy he is right now.
We’ve had a couple of days of lovely weather here in Ontario and unfortunately it has actually made him feel worse. To have this great weather and not be able to get out and enjoy it is frustrating. He continues to be lightheaded, likely because of the clot. His clot was his whole left leg, from his foot to his groin – and the leg/foot can be quite cool to the touch. His circulation can’t be great which may be what is causing him to feel woozy. Blood pressure and blood sugars are checked every day and have been pretty good lately. So our hope is that when more of the swelling goes from his leg, it means an improvement in his circulation and his wooziness will diminish.
It’s only been two weeks of a fairly lengthy process so we have to hope that the next couple of weeks we see significant improvement. We had put off his chemo treatment for a week to let the leg have time to heal, and I still think this was a good idea, however, we will proceed with chemo next week to keep up the assault on the cancer cells. In the meantime my role is to try and get him interested and involved in something that keeps his mind off of his leg. Easier said than done I’m afraid.