Onwards and Upwards

Hello my healing team,

I hope this update finds you well!!

I asked you for crossed fingers and I got that and more. Thank you!!

I find that I feel most conflicted about my predicament when I am uncertain about the path forward. I don’t need the path wholly mapped out. However I do need to feel confident that I am walking in the right direction. I have met with my two doctors a few times over the past week or so and we now have a way forward. I always felt that I would find a way to navigate the dilemma of hideously expensive drugs, and navigate we have. There are two drugs I need, with one estimated at $30k per month, and the second at $10k per month. My new Dr, who I aptly nickname ‘the Fresh Prince’, has drawn on all of his experience and contacts to secure the more expensive drug for free!! Yup!! Nudda! No need to sell the house and the kids no longer have to work at Safeway as night fillers!! Furthermore, for the second drug, we have found an alternative drug that I can use that is government funded i.e – free baby……yeah!!! Winning all round!!

So the replacement drug that my Dr has come up with is Thalidomide. So some background on this drug………..Thalidomide was first used decades ago as a sedative and as a treatment for morning sickness in pregnant women. When it was found to cause birth defects, it was taken off the market. Later, it became available again as a treatment for multiple myeloma. Side effects of thalidomide can include drowsiness, fatigue, severe constipation, and painful nerve damage (neuropathy). These side effects have been found to occur in 50% of patients. So…….it’s not all a bed of roses, but I am hoping I am on the good side of that 50%. If not, I may have to revert back to the drug Revlimid which I will have to pay for.

From where I sit right now, I am thankful. I am really pleased that there is more clarity on the way forward. The unknown was messing with my head. I am thankful that I don’t currently face the prospect of huge expenses. I didn’t really fancy living in a caravan. I am thankful for all of you guys, for all of the kind messages and offers to assist that we have recently received. Luv ya’s!!

Take care

Geoff