“The best laid schemes o’ Mice an’ Men,
Gang aft agley.
An’ lea’e us nought but grief an’ pain,
For promis’d joy!
(To A Mouse)”
― Robert Burns, The Works of Robert Burns
I was feeling quite elated following my last clinic appointment because after months of uncertainty about how long I would continue on treatment my consultant and I came up with a plan. The plan was to continue with this low dose treatment regime until around August, that would be 12 months since I started treatment, and then have my second stem cell transplant (which would be three years since my first one). The reason being that I am tolerating it well with good quality of life. I have learnt that spinning out something that is working for you for as long as possible is a good strategy when it comes to treating Myeloma. Living with Myeloma is a marathon not a sprint and as there isn’t a cure there is no hurry to get to the finish line. Come to think of it, there isn’t really a finish line. Of course the plan is subject to my light chains staying in normal range which they have been since November. If they started rising out of normal range then I would have the stem cell transplant as soon as possible.
So finally I had something to tell people, I had a plan, I could make plans, I could reach that bit further into the future, I could say yes to this or that invitation if it was before September. I started to lay tracks across my mental calendar for the next few months. My mind was racing with delight. I would have a glorious summer. The next few months would be my myeloma salad days before the gruelling stem cell transplant process.
Then on Monday when I went to the Haematology Day Unit in for my weekly shot of Velcade, I was given a print out of the most recent blood test result which was out of normal range and confirmed an upward trend over the last 3 tests. I felt instantly slumped, all my hopes and plans were shattered by an A4 sheet of paper. I have had many set backs and disappointments along this journey and this was another one (not even a particularly significant one) but for some reason it has hit me hard.
Now the plan is to have another test on Monday and if that confirms the rise, I will be coming off treatment since we must assume that it is no longer holding me in remission. I will then have a stem cell transplant in the next 4 to 8 weeks. If my light chains return to normal range then I suppose I am back on track but whatever the result I have already reigned in my plans. hopes and dreams. To avoid disappointment I can only plan around a month ahead at a time. I know plans can be cancelled or put on hold and perhaps it is better to make them than not but for me it was not necessarily the plans themselves that were the attraction but the freedom to be able to make them.