Yeah, three posts in one day is a little excessive, but because this blog is a also chronicle of my journey as a caregiver, I gotta mention a few things that don’t have to do with Nurture Shock, Etsy, or home decorating.
First of all, the tinnitus continues. Yesterday and the day before were okay; I was feeling good and hardly needed to use my Ambiance app on my phone (I use one of the sounds, Stormy Oregon Forest, to mask the tinnitus). It’s a very pleasant rainfall – the perfect pitch and frequency to mask the ringing, but I do get a little tired of listening to the sound of rain all the time. I’ve started using it any time I am alone and even when I’m watching TV. Just imagine having a white noise machine on all the time. I made an appointment with a doctor who specializes in weird diseases of the ear, including tinnitus. It’s on June 22. I also got some eardrops at Walgreen’s called Ring Relief. It’s just a homeopathic remedy, but I really, really, really don’t care – whatever works is just fine with me!
Second, two nights with the CPAP and no miracle cures, but there’s always tonight! I still don’t like the mask, and I hate sleeping on my back, but it is better than the one I had before. I just don’t feel like I’m actually sleeping – it feels like I wake up because of the mask or the tubing or the sound of the machine (which, coupled with the stormy forest in my room must be so pleasant! Well, at least I’m not snoring!)
And then, an update on my mom. She had her 12 week CT scans last Friday, and we saw the doctor yesterday to find out what her next step is. I had anticipated that the doctor would say she would continue on the study drug, XL 184, because at the 6 week visit, the doctor told us that her tumors had shrunk 5% overall. We found out that the protocol for the study drug calls for a shrinkage of 30% in order to stay on the drug. None of us remember hearing that number, and my sister looked it up in the paperwork Mom signed, and it’s not in there either.
The doctor we saw yesterday said that the disease had stabilized, and he seemed very happy about that. I was a little disappointed, because I thought there was a chance the tumors would have shrunk more and I thought, well, Mom is feeling pretty good (other than the side effects of the cancer medication) so that must mean the medicine is having a positive effect. The doctor measured the size of the lesions and compared them to the ones from her baseline CT scan in February and found out that the tumors have actually increased by 9%. Well, that was alarming!
A growth of 0-20% is considered stabilization of the disease. The protocol says that if the disease stabilizes or grows, you go into the study group. If the disease shrinks (by 30% which we did not know about) you don’t have to go into the study group; you can stay on the drug. So…basically, there was a snowball’s chance in hell of Mom continuing on the medication for sure after 12 weeks.
She is now in the study group, randomized to either the drug (XL 184) or the placebo. Now, intellectually, I know that this is so the sponsor of the study can collect data that shows it’s really the drug causing the patient to get better, not something else. But, damn, I had been thinking for weeks that she would stay on the drug because she had shown improvement in the 6 week scans. So this is quite disappointing.
She will take a pill every morning, just like she has for the last 12 weeks, but time will tell what, if any, effect it will have on her. They will do scans again in three weeks. If there is further stabilization, then I guess that’s good news. If the tumors have significantly increased (should have gotten a percentage on that), her doctor will find out if she’s on the placebo or the drug, and if she’s on the placebo, she’ll put her back on the drug. So there are some safeguards there.
I guess it’s just that this doctor’s appointment didn’t meet my expectations. I really thought, going into it, that Mom would just keep taking the drug and showing improvement. I have gotten used to the absence of the effects of the cancer – the elevated calcium causing disorientation and fatigue, the ascites filling up her belly – and I am not looking forward to the possibility of their return.
Between the cancer and the tinnitus and all the end-of-year responsibilities (plus the months we didn’t know what was really wrong with Mom), I have not had a break. I cannot relax. My relaxation techniques require quiet: reading a book, soaking in the tub, having a glass of wine, getting a massage, and when there is literally no quiet ever I can’t get away from feeling stressed (which of course makes the ringing worse….) It’s a vicious cycle.
People have suggested yoga, meditation – I already go to an acupuncturist (I have listen to my masking noise during my 30 minutes of lying there in the dimly lit room with needles sticking out of me) but those things don’t sound appealing because there would be, well, quiet! So I would hear the ringing!
The other way I drown out the ringing is by blasting the Glee soundtracks in my car or on the cd player in my condo, but that seems like an impractical (albeit musically uplifting!) way to get through every hour of every day.
Yeah, I know, don’t stop believin’.
P. S. I do not have a post on Chapter 5 of Nurture Shock ready for the morning. This chapter was a doozy – touched some nerves for me professionally, so I will have to do some research of my own before I can formulate a response.