Tuesday, July 23, 2013

More About The Cold Caps

The cold caps have been in the news recently. They are finally going to do a clinical trial to see if they work. There are a lot of people who have used the cold caps with complete success, and I am one of those people.

Are they hard to use? Well, I wouldn't say hard, but it requires commitment. It is some work to get the ice and drag the cooler around. There are chemo centers putting freezers in and I believe using the cold caps would be much easier if you didn't have to get dry ice and drag a cooler along.

Is it painful? The first one for each session is really cold. It is a bit harsh but your head gets numb pretty quickly and it really doesn't hurt when its numb. They also gave me ativan (like valium) when I did my chemo so I didn't feel too much.

There are a lot of places you can learn more about the caps. I got a lot of great information from breast cancer . org. Here is the area where they talk about the cold caps:

Here is the Punguin Cold Cap website:

They have information from a lot of studies on their site. These caps have been used in Europe for many years and have been studied extensively there. The scalp cooling therapy to save hair is considered a normal part of treatment in many countries.

Here is a link to an ABC news story where they are talking about doing a clinical trial with the caps. This is a different brand than I used. I used the brand Penguin Cold Caps.

I really hope the use of these caps becomes more widespread. I used them in 2009 and I was told I was the first woman in the NY metropolitan area to use them. It was so helpful to me. I was able to go about my normal life and not look like a cancer patient. I certainly felt like one at times, but I did not LOOK like one.

It really helped me to have control over something during that time. Chemotherapy is hard. Having everything feel like it is spiraling out of control is hard. If you can maintain control over something I think it really helps.

I have pictures of the Penguin Cold Cap use on this blog. They start with the chemotherapy on 12/7/2009.

If you are reading this because you were recently told you need chemotherapy, I wish you strength in your fight. Feel free to contact me if you have questions.

                       This is a picture of me wearing a Penguin Cold Cap during my chemotherapy.

Monday, July 1, 2013

Dr. Roland - NYU

After tons of waiting we finally got to see Dr. Roland at NYU. I decided to drive instead of taking the train since we had a 10am appointment. I thought it would be tough to take the train during rush hour. Also , finding a parking spot anywhere near a train station  is next to impossible. So we drove in. It is 30 miles from Julianna's daycare. I checked  it with the GPS. That is about an hour by train or a bit over two hours by car. Unless you are from this area you probably can't understand that, but it is reality.

I knew where a good street parking area is and it is only a block from NYU. There is no parking there from 8 am to 9 am due to sweeping. That means if you zoom up a bit after 9 you can score a spot. I lucked out and got one. Street parking is $7 for two hours and a garage is $20 for about the same amount of time. It is more than the money though, I am not comfortable giving my keys to the guys who run those garages. Anyone who has seen Ferris Bueller's Day Off  knows what they do to the cars.

We got to our appointment a bit early. I had already done all the paperwork because they sent it to me online. I had to pay ahead of time, $600. They don't take my insurance but I am hoping I will get something back if I send the receipt in.

We saw Dr. Roland and he examined Jack and looked at his ABR results. He said he appears to be a good candidate for cochlear implants but he will have to get some imaging first (CT, MRI). He said it does not appear that Jack has genetic deafness and it is likely from an ototoxic event. In Jack's case that is the simultaneous administration of gentamicin and lasix. We will still do genetic testing to rule out that unlikely possibility, but no one seems to think it is likely.

He did feel that we should get Jack hearing aids. Although he does not think they will help him hear, he thought it would help keep his nerves stimulated. I asked him what the timeline would be for Jack having surgery. He said there is almost no wait for him, but I would have a wait getting into the NYU Cochlear Implant Center where they will do the imaging. After the imaging we will have to decide what type of equipment will be best for Jack and, secure approval from my medical insurance company. So it might be a few months before he can have surgery.

I left Dr. Roland's office feeling pretty confident that he will be able to help Jack. I called the NYU Cochlear Implant Center for an appointment and had to leave a message. I am hoping they will get back to me soon because I would really like to get it all set up.

Tomorrow we are off to Oregon for a family reunion. We are pretty psyched about it! I am hoping it isn't too bad flying so far with both kids. We shall see.