Hearing Aids, NYU, Dr. Citron

We finally got the hearing aids. We got them on Wednesday the 11th. He didn't seem to have any notable response to anything with them in. There is a lot to the care and testing of the hearing aids. I had a lesson on everything when we picked them up.

On Thursday and Friday last week we went to NYU. We had three appointments. Two of them were to test Jack's hearing in the booth. They put us in a sound proof booth and put a small ear phone like device in Jack's ears. Then they send sound through them to see if he responds. If they think he does they make a stuffed monkey light up and play the cymbols.

They felt he responded to certain sounds in his left ear at about 75 dB. He only responded at certain frequencies. Personally, I really didn't note him to be responding all that much.If he moved his head or turned at all they were saying he was responding. He is a pretty antsy guy so it is really hard to tell why he is moving. Hearing at 75 dB is still a pretty profound hearing loss and he still qualifies for cochlear implants, but it is a lot different than the results of the auditory brainstem response (ABR) tests that he had at LIJ.

The audiologist told me that his hearing may be a bit better than it was when he was previously tested. If that is the case, his hearing aids are programmed wrong. She said that they could be hurting his ears and they may need to be reprogrammed. So I took them off him. She asked me if I wanted Jack to have another ABR at NYU. I told her that I do. The ABR is objective and the behavioral booth is very subjective. I don't want to damage any residual hearing he may have by using hearing aids that are programmed wrong.

The next day he had the same test for his right ear. He was a little irritable and the test was coming out all over the place. His right ear has auditory neuropathy and that means he doen't process sound even if he hears it. He did not test well with that ear.

Jack was also evaluated by a speech therapist. She was listening to his babbling and counting the different types of sounds he makes. She told me his cry sounds immature and she thinks he may have some vocal cord damage. He will need to be evaluated for that. It seems like we hear bad news at all of these appointments and I find it pretty frustrating.

We go back to NYU this Thursday for two more appointments. I am going to try to take the train this time. It was pretty tough driving in there and I was forced to park in a garage costing $37. I think it might be cheaper and easier to take the train even though it will be rush hour. We will see.

On Sunday we had my Dad so Betty could go to a baby shower. He is getting pretty bad and it was hard dealing with him. Julianna was very helpful and she is pretty understanding about Pop-Pop's brain disease. It was nice to be able to give Betty a bit of a break.

I had an appointment with Dr. Marc Citron my medical oncologist. He took blood and sent me for a chest x-ray. He did an exam and said he thinks everything looks normal. He also told me that I am now in the time where I have the greatest risk of recurrence. Once this year passes my chance of recurrence will start dropping dramatically. It can be pretty stressful to think about so I try not to.

Julianna is enjoying school and her activities. She has violin, ice skating, dance and arts and crafts. I am trying to find a place for swimming lessons that is a little closer to home than our last place. Jack i s happy and is proud of his two new teeth. We are all enjoying fall and having a good time!

Good Things and Bad

Tierney is feeling good. The baby is getting bigger. I am going to try to get to Arkansas for the 20 week sonogram.

I went to Dr. Citron, my oncologist, yesterday. I have some pain to my right clavicle that has been bothering me for about a month. He said it does appear to be inflamed there and is sending me for an MRI. He said it could be an inflamed sterno-clavicular joint. Of course they never tell you what else it could be.  But I already know that. They can't do the MRI until Thursday due to having to wait for insurance approval. Then I will have to wait for the results. I hate waiting for these tests, it is torture.

My Dad's Alzheimer's disease is progressing. Betty has been considering a nursing home. While that is probably a good idea it is very tough. He has been getting harder ans harder to care for which is what led to that decision. So she got to the point of making that decision and suddenly he started to get easier. It is like he knows and doesn't want to leave. I had him on Friday. I took him to lunch and for a drive. Then I got a pizza and picked up Julianna and we all ate together. He really was easier. It was hard to believe. We are still going to check into places so we are ready but for now it is on hold. I was happy that we got to have such an enjoyable visit.

All these things going on help me to put things into perspective. What matters, what doesn't. Julianna is involved in a lot of activities and I love watching her discover new things. She is such a happy little girl!

Oncologist And Other Things

I had my check up with the oncologist. I had a physical exam as well as blood work. Everything is normal and that is great. I told him I am still very tired. He said I should try to do heavy exercise every day. I think that is a great idea but it has been hard to do. I am tired and I don't have that much time. I did rejoin my gym and I am hoping to get there more often.

I still have my port. I am hoping to get that out soon. It has been hard to schedule. I need someone to drive me due to the anesthesia and someone to watch Julianna. I am hoping to coordinate that soon. I had it all set up twice and they cancelled my procedure.

I also went to the breast surgeon. All was normal and I do not have to go back for a year now!! I was worried that the implant side might be leaking because the shape changed a little. Dr. Kostroff thinks it is just settling and doesn't feel anything suspicious. She said the only way to tell for sure is with an MRI, but she said it is very unlikely that there is any problem. Because I have only one implant I have nothing to compare it to. I must say I like the side with my own flesh much better. It is warm and much more natural. The implant side is cold and uncomfortable. I may do another flap in the future, I am still deciding about that.

Julianna had pneumonia and strep. It was a bit harrowing. She was fine when I sent her to daycare. They called me about 11 am to tell me she has a 101 fever. I zoomed over there to get her. When we got home I gave her motrin and I called the pediatrician to make an appointment. I got an appointment for 2:45. She was playing and seemed ok. I then heard a weird pleuritic rub sound coming from her. It sounded almost like she burped but it was coming from the side of her chest. It was only occasional. I called a few medical friends to ask them what they though about that. They asked if she was in any distress. No, she was not. She went in for a nap and then woke up about 2:15. Perfect timing for our appointment.

When I was putting her in the car I noticed that her hands looked mottled and her lips and nail beds were cyanotic (blue). I freaked a bit and was considering taking her right to the ER. I decided to go to her doctor since it was 5 minutes away. As soon as we walked in she vomited all over. I told them she needed to be seen right away since she was getting bluer. They brought her right back. The doctor said we needed an ER right away and had the nurse call 911. I called my friends at work to make sure they were sending someone great.

The doctor gave her a gram of a broad spectrum antibiotic. He said something big is going on here and it is moving fast. Her temp at the office was 102.7. She liked the ambulance (genetic?) and we had a great paramedic.

When we got to the ER her temp was 104.8. Her color was a bit better. They did a chest x-ray, blood, iv and rapid strep test. The strep test was positive. The chest x-ray was not read by the radiologist until the next day but was positive for pneumonia and reactive airway disease. About four hours later she made a great recovery and we were able to go home.

She had bacterial pneumonia which was actually good because it responded very quickly to the antibiotics. After all the years of being a paramedic I can truly agree that it is very different when it is your own child. We were really lucky that the pediatrician was so proactive and that everyone else was really good.

She is feeling great now. Today was her first day of soccer. She was the only girl there and she was awesome. Its fun to watch three year olds try to play soccer. They all sort of do their own thing. It is very amusing.

Other than all that, I have been working and enjoying life in general. I take care of my Dad every other Friday so my stepmother Betty can get a break. That is not too hard but it is sometimes emotionally tough. I take him to lunch and hang out with him. He continues to deteriorate. Alzheimer's is a rotten disease. Julianna loves to see Pop-Pop and Grandma. I know she knows that Pop-Pop doesn't interact just right, but she runs over to kiss him pretty frequently. We enjoy our visits.

I hope everyone is doing well. Thanks for all the help and positive energy! We love you all.

Julianna in the Er with her specail arm IV cover. This was when she was feeling better, just before we went home.

DR. Citron

I made it to work today and I seem to be functioning! I had my appointment with Dr. Citron. He is usually running on time so I can go on my lunch. He congratulated me on finishing the treatment. It was actually pretty difficult. I am still fighting off side effects. He said my counts are pretty low and that I need to take iron (again).

He is sending me to an opthamologist because of a weird side effect that I had. I got this blue flashing light in my right eye. It kind of looked like how your eye responds when you look at a bright light. The only problem is that I didn't look at a bright light. It was blue and flickering and took up almost the whole field of vision in my right eye. If I closed my eye it was still there. It lasted a few hours but then went away and it hasn't come back. Dr. Citron said it could be from the taxotere but it is certainly not a common side effect. It could also be a migraine, even without a bad headache. (I didn't know you can have migraines without bad headaches. He says yes.) It could be something completely different so he wants me to get my eye checked to rule that out. My guess is that it is from the chemo. Taxotere has tons of neuro side effects and I seem to have gotten them all.

My knees and elbows are pretty swollen. He thinks it should go down soon. My right elbow is particularly bad. I am having trouble picking things up. If I have a small soda I am ok but if I have a large I need two hands to hold it. I can't pick a large soda up with just my right hand. He thinks it should resolve soon. I hope so because I am going to need to carry things in the airport on Thursday.

I had a small lump under my right breast. He checked that and said it was scar tissue from the reconstruction. That was a load off. He said the cancer is very unlikely to recur while it is actively being treated. He said that is why so many people get very depressed when their chemotherapy ends. I am not depressed that chemo is over. I am thrilled and I will be even happier when I start feeling better. I have herceptin until December and I am unlikely to recur while that is ongoing too. Maybe when that is over I will get depressed, but somehow I doubt it. I just want my life back.

I don't have to see Dr. Citron again for 3 months. I have to get the herceptin every three weeks. I also have to go for another MUGA scan in April. They have to make sure the herceptin is not effecting my heart. My MUGA scans have been great so far.

Thanks everyone for all the support. I could not have gotten through this without everyone's help. And, I still have a full head of hair!!!!!!!

DR. Citron

Do not knock on Death's door. Ring the bell and run like hell. He hates that.


I went to Dr. Citron today.I was able to go on my lunch break. My white count is good. My red blood cells, hemoglobin and hematocrit are pretty bad. I had an idea that this was the case. My blood pressure is also very low.

I have been having the side effects but they are not as profound this time as they were last time. I still have facial twitching, stomach pain, GI disturbances, numbness in hands and feet, achiness, pain in joints, bleeding from nose, mouth and rest of GI tract. They are all there but less intense than last time. I realized why that is. He lowered the dose! I forgot. So its not as bad. For instance, I still have stomach pain but I am not curled up in a ball and unable to move because of it. I can carry on. Very good. Dr. Citron was surprised that I am working, especially when he saw the blood counts. He said this is a terrible chemo regimen and I have been bombarded by very high doses of it. I must say that it has been much harder then I thought it would be. I rarely say that about anything.

He asked how I was feeling and my answer was "better than yesterday." I also figure, not as good as tomorrow. I know it will now keep getting better until we do it all again. But that will be the last time!! The days are getting warmer, spring is coming and there is a light at the end of the tunnel.