Good News on the Hearing Front

I had my check-up today with the audiologist, Dr. Keri Kwarta and the ear, nose and throat doctor, Dr. Caldarelli.  My hearing has improved significantly.  The doctors say it is seldom that they see such drastic improvement occur so quickly.  The audiologist said she had maybe 5 cases of recovery like mine in her work experience. 

 Although not perfect, my word recognition performance increased from 20% to 92% in the right ear (it was at 100% in left ear both times).  Although the test on recognizing tones was still below normal for the right ear on about 3 or 4 frequencies out of 10 tested, it is still much improved over the last test across all frequencies.  (The left ear is fine on all frequencies.)

Nobody could say whether I might have even further improvement or not.  I still have tinnitus constantly in the right ear.  I will continue stepping down on the prednisone dose and should be done with it entirely after November 11.

In other health-related news, I continue to get some bloody noses and daily headaches (ENT doctor thinks headaches are triggered by cervical issue based on my description of  location of pain, but he didn’t even look at it.)

I am really excited about the improvement in my hearing.  But as usual, am not satisfied and want further improvement.  I guess I'm a perfectionist.

The Sound of Sound

Good news on the hearing front - I am happy to report that hearing is coming back to my right ear.  It still has the hissing of tinnitus most of the time and the clarity and volume of content the ear processes vary throughout the day, but I definitely have at least partial hearing in that ear.  I am about midway through my steroid treatment for this problem so I am hoping I will continue to see more progress.

I see the Ear, Nose and Throat doctor on Thursday morning and will have a follow up audiology test to see my progress.  I'll post results by Friday.

Today I had chemo for just one drug, Taxol.  Everything went smoothly. Including all the pre-medications to counteract the effects of the chemo drug, a total of about an hour and a half in the chair.

The hair is still hanging in there.  Still just losing it in little wisps when I shampoo, towel dry, blow dry or brush my hair.  I'm wondering if the steroids I'm taking for the ear issue might be slowing down the hair loss.  Whatever the reason for it, I'll take the extra weeks of having hair! :) 

Next week is my off-week - yippee!

The following Monday, November 17 will be the beginning of the third cycle (there are four all together) and will include the full chemo with all 3 drugs as well as a CAT scan for the lungs and an appointment with Dr. Bonomi.

Whaaaaatt??!!!

This cancer roller coaster continues its gyrations.  The past week has been a doozy!
 
A week ago today (October 20), I woke up with ringing in my right ear only.  Although tinnitus (the official name of this syndrome) is not unusual for me occasionally, it's usually in both ears at once and it only lasts a few minutes or hours.  In this case, my one ear has been ringing continually for over a week.  Furthermore, on Thursday morning (October 23) I lost hearing in that ear entirely.
 
EXECUTIVE VERSION:
 
The hearing loss is not related to the cancer in the brain.  The MRI of the brain showed everything, including the little lesion they had seen in the prior MRI scan, to be completely clear.  The hearing loss is probably due to a random virus that got into the middle ear and hearing may or may not be restored with some serious steroids over the next 2 weeks.  There is about a 50% chance of permanent hearing loss. 

Although my hair is thinning and I continue to lose small amounts at a time, it is not coming out in clumps so I don't need to shave my head just yet. 
 
LONG VERSION:
 
When I lost my hearing entirely on Thursday, I spoke with my GP, Dr. Caplan and she saw me that afternoon.  Based on the symptoms I presented, she didn't think it was brain related but still was anxious to see the MRI results.  Her best guess was an infection in the Eustachian tubes in the inner ear.  She started me on some low-grade steroids.  I was optimistic this would solve the problem but started to have my doubts and concerns after three days passed and there still was no improvement.
 
The good news – and it is REALLY good news – is today's MRI revealed that the hearing loss is completely unrelated to the brain and the cancer and showed the brain to be perfectly clear of any lesions, old or new. 
 
Doug and I were so relieved to get a clear MRI.  After my brain lining (meningeal) inflammation back in July and learning about the new little lesion in the brain at the last MRI, we were frightened about where this hearing loss problem might lead us in terms of treatment options and their impact on quality of life.
 
While I was at Rush today for my MRI, I saw Dr. Caldarelli, an ear, nose and throat doctor, to look at my ears and have an audio test.  He suspects a virus in the middle ear.  They aren't exactly sure how I got this virus - it could be my weakened immune system made me susceptible to something which I wouldn't otherwise have been.  It may just be random (My recently-blind dog Cassidy and I are competing in collecting sensory impairments with no known cause.)  There is a 50% chance the hearing will come back with heavy duty steroids (yup, back on the prednisone) over the next two weeks.  I will get a more complete report tomorrow.

More good news – so far my hair is very gently leaving me.  It is thinning, but still presentable.  Instead of big clumps of hair coming out with a brush or a shower drain piled high with hair, there are just little delicate wisps that collect in my sink, tub and brush.  Much more manageable.  There is some discrepancy on whether I will lose it all or not – or if I don’t lose it all, just how much scalp will show through.  If a lot of scalp, then I’ll shave the rest off anyway.  In the meantime, I am enjoying having hair each additional day I get.

 

So I am riding high that I had a clean brain scan, but I am feeling a bit low about the prospect of losing my hearing.   Losing my hair is kind of the flat track on the coaster that's in between the upward climbs and downward dives.  I'm not too worried about it one way or another.

 

I hope you have enjoyed this story of my abusement park ride with cancer.

 

WHAT'S AHEAD

 

If I receive any interesting news in my call with Dr. Caldarelli tomorrow, I'll post it.

 

Next Monday, November 3 will be an Avastin-chemo-only appointment, so a shorter day at the hospital.  I may not even bother to send an update unless I learn some new information. The following week is my off week.  A CAT scan and big chemo treatment will occur on November 17. 

 

Stay tuned!

A Step in the Right Direction

Today I had my first chemo with the new treatment at the Rush Oak Park hospital.  I am pleased and relieved to say that everything went smoothly.  Although the infusion nurse had some trouble finding my wobbly vein, she did get it in and nobody talked to me about putting in a port today (whew!)

There were a few points along the way during the chemo infusion where a patient may experience that a drug might causes a reaction in the body - hives, nausea, fainting, shortness of breath are some examples - and the dosage or drug would need adjustment before proceeding. Fortunately in my case, I got through all three drugs without any problems.

The next test is seeing what and how severe the short-term side effects from today's treatments are.  I probably won't have any noticeable side effects until Sunday and they might be strongest Sunday through Tuesday or Wednesday next week.

My next chemo will be just the Taxol chemo drug and that will be on Monday, October 13. 

DL and the Terrible, Horrible, No Good, Very Bad Week

Actually, it has been longer than a week that has been pretty lousy but it's close enough.  Read on at your own risk of being bummed out.

Our Dogs Are Illin"

Sundance - On September 15, we received confirmation from a biopsy of Sundance's nose that she has Discoid Lupus Erythematosis (DLE for short), which is different from the human form of Lupus in that it usually stays localized around the snout for a dog.  If left untreated, ulcerations develop around the nose, mouth and snout.  Treatment will be either a topical ointment, oral drug or a combination.  Before we know what treatment we will use for her, she needs to heal from a severe bacterial infection in that spot (also on her butt) so we are currently treating her with topical and oral antibiotics for that.   Like her Addison's disease, the DLE is an auto-immune disease that must be treated the rest of her life.  The good news is she can still have a normal, good quality of life in spite of this and it doesn't shorten her life span.

Cassidy - On September 25, we let Cassidy out in the backyard to go to the bathroom.  She took off from the house like a bat out of hell as usual, but then ran full speed into the side of the bushes.  A few hours later, we let her outside again and she ran into a cement planter.  The next day, I took her to the vet and he confirmed that she had suddenly gone blind.  Today (Oct. 1) I took her to a veterinary ophthalmologist who diagnosed her with SARDS - Sudden Acquired Retinal Degeneration - which can come out of nowhere and cause permanent blindness overnight.  She seems to be adapting well, but we are all in a state of shock.

I've Had Better Times

This past Monday, September 29, I had my usual CAT scan on the lungs, blood work and visit with Dr. Bonomi.  What wasn't usual was the results of the scan.  The cancer lesions in the lungs have increased in both size and number.  Not in a fast, aggressive manner, but enough for Dr. B to strongly recommend a different course of chemo treatment.  So, starting this Friday and for 12 weeks broken out into 4 three-week cycles, I will be having a combination of three different chemo drugs - Taxol, Carboplatin and Avastin - infused into my body.  Chemo treatments will be one day per week for two weeks in a row and then the following week off.  That three-week cycle (two on, one off) repeats four times.  After the first two cycles (equal to six weeks), I will have another CAT scan to see how the lungs are doing.  If things look good, we continue with the last two cycles of this treatment.  If things don't look good, we look at some other treatment but at this time it isn't clear what that would be.

I'll be taking enough preventative drugs to keep nausea at bay and have only slight fatigue, but I will likely lose my hair again and there is a chance of neuropathy that causes numbness in the fingers and toes on a short-term or long-term basis.  Dr. Bonomi believes with the approach he uses for this chemo treatment, the chances of neuropathy are reduced.

So that is my story at the present time.  I sincerely hope it gets better in future postings.  I wish I could post a more cheerful message, but it hasn't been easy to deal with all these issues especially when they are happening one right after the next.

A Great 2014 Lung Run

Team DL Brunch at Ann Sathers

We walk to fund research,

We run for our friend,

As Team DL we gather,

So lung cancer will end!

- written by Susan Meismer, multi-year Team DL participant
 

This past Saturday, September 13th, was the 10th annual Chicago Lung Run.  It was also the 5th year that Team DL has participated.

Although team members come and go throughout the years as they have other commitments and activities, some are there every year.  In either case, the support is felt from all of them every year.  And the donations are always generous and numerous.  A big THANK YOU to all of you who have given your time, your money and your support to this wonderful cause over the past five years. 

And just what is that cause?  The money goes to Uniting Against Lung Cancer. UALC is dedicated to funding innovative research and raising awareness to find a cure for lung cancer.


Hopefully, we can continue this tradition for years to come or until they discover a cure, whichever comes first.  And we can also continue having a brunch at Ann Sathers afterward!  :)

Better News Today

I received informal MRI results from my oncologist over the phone this morning.  The very good news is that there is no sign of ANY cancer in the meningeal lining of the brain - this is where I had the swelling that sent me to the hospital in July.  Dr. Bonomi is very happy about this development.  It is clear the Tarceva is working.  Yay! 

There is a little gray cloud in this otherwise blue sky report.  There is a new tiny lesion (we're talking millimeters) in the right occipital lobe that we need to keep an eye on (pun intended - the occipital lobe governs eyesight).

The doctor is not at all worried about it and says if it grows we can just zap it with focused radiation. I'm not feeling quite as cavalier about it, but I can't do much about it so will do my best not to let it worry me.  I suggest we all take that path.

I should have the radiologist's formal report on the MRI by tomorrow but will only post something if there are any more details that are worth sharing.