On September 12 my husband developed a significant blood clot in his left leg. It stretched from his ankle to his groin. Here it is some seven weeks later and we still are dealing with the residual effects of the clot. He had developed petechiae and purpura in the left leg as well which was quite alarming. Where are we at now? At our visit to the Oncologist on the 21 of October, the doctor looked at his leg and decided that there could be a bacterial infection under the skin and consequently prescribed an antibiotic. My husband’s been on the antibiotics for over a week now and the leg, in particular the petechiae, is looking much better. The swelling continues to exist but much slighter now and is in the lower calf, ankle and foot area. He continues to require a Fragmin® injection every day, and likely will for several months after his chemotherapy ends. We have been able to successfully transition to a smaller, less painful needle (6mm insulin) for his injections so there is less bruising on his stomach.
He has developed peripheral neuropathy in all his digits, and the toes on the left leg are particularly sensitive. I’m not sure if this is caused by the swelling that seems to worsen over the course of the day, or if it is in part due to a stroke he had about 9 years ago. Regardless his toes on both feet are quite sensitive and he sleeps with his feet uncovered. Despite this and all in all, he’s on track with the clot dissipating; the medical professionals (doctors and nurses) had all indicated it would be a month or two before it was gone and that’s precisely where we are at.
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.
This week we have been dealing with a rash on my husband’s left leg and today is the third day. As a result of some telephone calls and a report made by the visiting nurse, we heard from the doctor late yesterday – Thursday. The doctor advised us that she wanted to get some blood work done as soon as possible to see how his platelets were doing. Platelets help the blood clot. So this morning we went to the laboratory at our local hospital and had some blood drawn. Our GP was concerned enough that she had requested we go to the lab at the hospital since she would get a report back the same day.
At this point in his chemo cycle, my husband is in his “low” phase; the chemo has gone through and demolished his cells and his body now is trying to replenish. Alongside this he has the issue of his blood clot and continues to take a daily Fragmin® injection. The rash is an additional irritant in the whole cycle. It turns out that the rash on my husband’s leg is two different things and is related to his low platelets. He has petechiae – a small red rash under the skin, as well as purpura which is the larger purplish splotches on his leg. This means that he is leaking blood under the skin. In consultation with our Oncologist, our GP instructed us to reduce his dosage of the blood thinner from a “full” dose to a “three quarter” dose – which is normal procedure after about a month on the blood thinner. Fortunately, we recently requested a prescription that would allow us to draw up our own injections so a dosage reduction was not a problem from an administration perspective. We were also able to discuss the needle size with the Pharmacist and, as a result, we are now using a smaller and finer needle for the injection – which is far less painful. Commencing today we used the lower dosage for his Fragmin® injection and hope that this will help improve his comfort level.
Current status is that the rash is quite angry looking on his leg. It is tender and painful to touch and has had an impact on his mobility. Not too sure how long we will have to deal with this issue. Needless to say, it hasn’t been a stellar day for my husband. He has a headache and I suspect it is as a result of the stress of worrying about what is going on with his leg, wondering what the rash might be and if it is related to the blood clot, the discomfort associated with any type of physical movement, and all the while feeling the extreme fatigue which accompanies the “low” point in any chemo cycle.
We head into the Thanksgiving Weekend here in Canada and it will be quite different for us this year. It will likely be a quiet almost solitary event – we do have a small family gathering planned but it won’t be at our house, it certainly won’t be at the family cottage, and the reality is that we don’t know if he will even attend. It’s a hard road for an extreme extrovert. If only he were a bit more of a computer techie – we could Skype everyone in around the dinner table and have a virtual family meal together!
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.
The title of this painting is “The Musicians”. With all that chemo splashing around in his veins, it will be interesting to see what his next painting looks like!
For the first time in weeks it seems, today was a decent day. It started off a little rocky, there was some nausea, but as the day progressed my husband started to visibly improve. He knew that today had to be heavy on the proteins. The chemo has gone through him and wiped out all his blood cells so he needs the protein to rebuild. The toxins from the chemotherapy also still need to be flushed out – so a day that would also be heavy on fluid intake. He was game. By mid afternoon he was starting to perk up. This was a good thing. His taste buds are still off – at dinner tonight he informed me that most of the food I served him was a little “off” but since it didn’t seem to bother me, he ate the food anyway. This was quite funny really – the two big culprits were white rice and water.
He’s busy painting a submission for an art exhibition right now – which is another good thing. We’ve rigged up an arrangement where he can keep his left leg elevated in deference to his blood clot and still paint at an easel. The clot is still very apparent and his leg is still very swollen. By the end of the day his foot is smooth and shiny and his ankle is completely puffed up. Despite the swelling the pain has begun to subside which suggests he is well on the way to recovery. Not out of the woods completely but hopefully close.
There’s always a hitch though. On the 20th of this month he goes for a CT scan. There are three potential outcomes: 1) the chemotherapy is not working; 2) the chemotherapy has managed to stop the progression of the cancer, and 3) the chemotherapy has managed to reduce the presence of some of the existing cancer. He told me tonight that the chemotherapy has taken a significant toll on him physically and mentally and that, depending on the outcome of the CT scan, he has decided that he may take a break from the treatment. I know that when he starts to feel better, like he is now, he’s loath to go back in for another treatment. It’s important that he have a sense of control in his own wellbeing, and also the knowledge that he can and will feel better. There will be much more conversation in this regard prior to the 20th but for now there will be no more dialogue on this topic – decisions will be made after we get the CT scan results.