Bad News

We made an appointment with a fertility specialist. She had two blood tests last week to determine her fertility. Cat got the call today, and there is very little to no chance that she has any viable eggs. The chemo for the transplant was heavy duty and killed her chance at motherhood. But, it saved her life. So it feels like scleroderma has won again. Because it has. It has stolen another part of her life.

We are grieving big time.

Meanwhile, Cat gets worse. Not having a clear direction about where to live and when, my concern for Cat far outweighs stuff like shelter. She is relapsing no doubt about it. Her fingers continue to curl. She is having more and more trouble doing simple tasks like painting her nails, for instance. Scleroderma is attacking her legs and feet. Her back hurts. She is in constant pain. Having rarely taken pain pills in the past, she takes them often now. She also takes anti-anxiety pills as needed. She stays in bed for hours trying to rest. Especially after making the round trip to Seattle in 2 ½ days.

How long do we have before she won’t be a candidate for transplant #2? Are things happening inside? Not seeing the doctor on Friday, leaves us in a darker place than before. Then we were assuming she’d be a candidate, but if this progression continues at this rate…how much time do we have? October 28 in scleroderma time can be a lifetime.

We fully expected to be told a transplant date. Instead, we were told that new drug had just been approved for use with scleroderma. Actemra. It has been used for RA and was, in June, approved by the FDA for scleroderma. Dr. Furst had alluded to the drug in July but had said that it probably was too far off in the future for Cat. Instead, it is now available.

Cat did so well at the 2 hour appointment. We really like Dr. Furst. She answered his questions and poured out her heart. For one of the few times and out of lots of doctors, she felt seen, heard and understood. He told her that she should be very upset about her disease, and it’s relapse. I know that sounds odvious, but she has been accused of being a hypochondriac, drug seeker, having PTSD, etc. Dr. Furst took her hand, looked her in the eye and said, “You are handling this so well for how very sick you are. You are a cautious drug taker. You are proactive. You are doing everything you can to get well against a disease that is one of the worst. I am surprised that you aren’t more depressed than you are. You are doing a good job.”

Hearing those words were manna to her soul. He did tell her, though, that, at this moment, he wouldn’t recommend a transplant until she gets more of a handle on her depression and anxiety. He doesn’t feel that she has the fight in her to make it through. Her lungs and heart are strong enough, but we both need to get settled physically and mentally. The last 3 months have been so difficult. Fortunately, the drug, Actmera, that has great promise for scleroderma is suddenly available. Dr. Furst causally mentioned that it costs $20,000 per year.

leave a comment