I haven’t posted for a long time. When things get wonky it is too difficult to sit down and put into words what or how I’m feeling. The last little while has been like that.

Mathew’s back and left leg started hurting more and more, shortly after the last time I posted. I took him to the doctor and, based on the describing symptoms, the family doctor felt that it was possible Mathew’s primary tumour was growing again. This meant that the overall outlook for him looked grim.

We all went into shock and decided to keep the information to ourselves; including keeping it from Mathew. As time went on, Mathew wanted to know why we weren’t getting a CT scan of his back to find out what was going on. After careful consideration, I went over all the options with Mathew; of what the scan could potentially reveal. He finally clued in about a regrowth of the back tumour being a very bad thing.

The next while is not possible to put into words and we went through hell and back. When Mathew had enough time to adjust, he and I decided to request a CT scan and deal with the reality of the situation, rather than worrying about the possible worst outcome. The Oncologist scheduled a CT two weeks ago and bless her heart, we saw her 2 days later for the results. Normally we see her a week after a test.

The CT scan showed no change to his primary tumour but did show another spot on Mathew’s lung, just above where the other 3 nodules were removed in May. The Oncologist then ordered an MRI of Mathew’s spine. The new 3T MRI machine would show a much more detailed look at his spine than the CT scan could, in case there were minute changes not picked up by the CT machine.

So Mathew had the MRI last Friday and we received the preliminary results today at the family doctor’s office. It was a HUGE relief to hear that his spine shows no changes from the last time an MRI was done (and I don’t recall when that was, off the top of my head).

This doesn’t explain the increasing pain in both his back and now both of his legs. We see the Oncologist for her report next week and I understand she is going to refer back to Dr. Abraham, the back surgeon we have seen a few times over the last couple of years. It could be just regular back problems that plague so many people, perhaps aggravated in his case because of all the stuff that occurred in one small area of his back.

The lung nodule is a watch for now and let’s hope no more spots spring up. This one apparently showed up in April then disappeared on the May scan…only to show up again on the one 2 weeks ago, now almost 4 mm. Not a big size but still the fact that it is bigger makes it a concern.

Our lives have been up and down and spinning worse than a roller coaster. This has taken a toll on all of us. With Mathew’s mobility decreasing and his pain levels increasing, his sleeping patterns are erratic and so are his moods. My sleep patterns and moods responded and I was just so stressed that work was impossible – I couldn’t concentrate and was easily overwhelmed. The doctor took me off of work for a while and so I am working very hard to get some semblance of life back for Mathew and the rest of us, so I can get on with my working/home life too.

I don’t hear a lot about the far-reaching effects of cancer and its impact on families. The long term effects, when one isn’t cancer free and has a nasty one like Ewing’s Sarcoma changes all the family’s life forever. This journey has been 2-1/2 years so far and no end is in sight. Some days are so bleak that it is like being in hell with no end in sight. I think only other people in this situation truly can understand how low you can go. There is no use in saying “live strong” or “you have to keep positive”. Mathew wasn’t a charming, happy little guy all the time before this cancer started in him and he is angry that his life was thrown into the air and it hasn’t settled yet. He hasn’t been to work in a very long time, aside from the family picnic in late June. The pain is unpredictable and come on without warning and who would want to be at work under those conditions? Here is someone who is prone to obsessive-compulsive actions… and now worries excessively about the pain.

Is there a cure for Mathew? We were told at the beginning, that if it spread to his lungs that there wasn’t a cure. I suppose if the metastasis only spread to one small portion of his left lung and the surgeon cuts it out…maybe there is still hope. I will always have hope. It’s the day-to-day of “what NOW?” and what do we do to help him with his pain? that gets to me. His violent and sudden mood swings, his weird sleep cycles, he wants to be active but then his body lets him down…

We purchased a wheelchair for him and I picked it up today. It looks like the ones in the hospital so it’s heavy-duty. The cheap ones wouldn’t last so this expensive beauty should hold up to a lot of wear and tear. It is a bigger one that fits him and he is pleased with it. Mathew just isn’t able to walk far at all without severe pain curtailing any activity away from home. We had returned the one rented (loaned?) from the Red Cross, believing we were done with it. Less that 2 weeks after that this current downward spiral of pain started up. With this aide I’m betting those day excursions might last longer and work him into a better stamina for being out and about.

As for the pain itself, we are trying different drugs and dosages to treat it. A new combination starts today and I hope it gives him some relief (you have no idea how much I want it to work!!).

Today’s news was a glimmer of hope in what was an awful, awful month. There were a couple of shining moments, such as when we took Mathew to Halifax and he rode on the “Theodore Tugboat Too” in the Harbour; and when my youngest sister, Dominique, popped in for a too-short visit. We hadn’t seen her in 13 years and it was wonderful seeing her and that crazy dog she now has. Other bright spots are when we drop in to visit local family or they come to visit us/Mathew.

Now give us a bit of sun and warm weather again, so it feels like summer?!

I will try to keep this updated more often. Thank you for hanging in there, all of my loyal 1 or 2 followers (you know who you are and so do I!).