Latest Update

I am SO happy to be done with chemotherapy!  Last week was the 12th Taxol infusion, and it's nice to not have to think about going in today for the afternoon!

In fact, today, Bill and I are going to follow Ben to JSU and help him set up his dorm room.  Ben has band camp starting tonight.  He's had a great summer, culminating in the past 2 weeks working with the drumlines at Spain Park High School and Vestavia High School (and the weeks before then at Ohatchee High School).  He had great experiences, and enjoyed his time a LOT!  He had really long days (7:00 AM to 9:00 PM every day), and NEVER complained.  Good to know that he is in the right program at school!

Caden started 4th grade at Avondale Elementary last week, and is doing very well.  Of course we are biased, but we truly think he's a remarkable 10  year old!  Very wise for his age and aware/caring of others.  Rachel is a great mom.

On Tuesday, Bill and I went to see Dr. Nabell for a discussion about next steps.  

Current side effects - Dr. Nabell said that most of the side effects will dissipate between 3-6 months.  She said my energy level will get better each week that I'm off chemo (thank goodness!).  I currently have numbness in my fingers and toes and am starting B6 vitamins today, which she said might help get over that quicker.  I have an appointment with a UAB podiatrist on Monday, because I smashed my big toe when we were in Kentucky.  The chemo's effect on hair and quick growing cells also affects nail beds, so about half of my fingernails are brown and ridged (and basically dead but she said that the new growth will just push the dead part on out).  So my toenails are the same, and when I smashed the toe, the nail has pulled up.  I started my second antibiotic for it, but it's going to have to come off.  She said the nail WOULD grow back, but it will take a year probably.  I won't really know anymore til Monday.  YUCK!!

After meeting with Dr. Grotting last week (plastic surgeon who worked with Dr. Urist on my first go-round), I learned that he is not doing that surgery any more, but his associate is.  That helped me know that I would go ahead and use the Kirklin doctors rather than go with someone else outside Kirklin if it can't be Dr. Grotting.  He said that he would not use saline, but would use tissue for a better match.  However, he also agreed that if the surgery wasn't necessary, to really think it through, as it would add a 6 week recovery time.

So it was good to get that information, but it basically helped us confirm that surgery is not the direction I want to take at this time.

Concern about radiation is lymph-edema possibilities.  Even with surgery, Dr. Nabell recommended radiation for the axcillary area in the soft tissue area under the armpit (lymph node area).  Without surgery, she would add an area in the breast tissue.  The chance of lymph-edema doesn't change with adding the second site.  The other "risk" with radiation is skin toxicity, which they will visually check for each visit.

The radiation oncologist will be calling me to set up our first appointment time.  Dr. Nabell said they would negotiate with me re: daily times so that I can have as regular a schedule as possible.  She said they like to wait about 2 weeks before starting the radiation to let me have some recovery from the chemo.  I'll be going to the Acton Road Kirklin Clinic for the treatments, as it's much more convenient and much closer than going to the Kirklin clinic downtown.  After the first couple of appointments, I should be able to get in and out in about 30 minutes.

Regarding scans, etc., Dr. Nabell said she knew this sounded kind of harsh, but that their research from cancer patients around the country has shown that scans do often find cancer issues several weeks in advance of other symptoms coming up, but that the outcomes of having the scans vs. symptoms appearing are not differentiated.  The risks from the additional radiation from the scans offset the benefits of finding the cancer a bit earlier.  However, she did say that I could talk with them if I felt that I need a scan or had major concerns at some point.  What I will be looking for is any symptom that doesn't fit (with me knowing that I have a cold, flu, etc.) and that doesn't go away in 2 weeks.  

So right now, I have a podiatrist appointment scheduled, will schedule an appointment probably next week with the radiologist, and then have an appointment with Dr. Nabell in 2 months.  I feel really good about the level and quality of care that I'm receiving, and Bill and I feel that we're on the right course of treatment.  

Grateful for so much.  As I wrote a while back, there are so many people in my circle who have experienced so much tragedy or heartache in the last few months.  Life or quality of life is not certain.  I wish I had some kind of wise word to give, but I'm just not there yet.  I would say to hug your people every day and tell them you love them.  

Love you all!
Denise