Next step??

On our way to go camping Friday, I called to make the appointment with the oncologist in Indy.  My first choice doctor did not have an appointment until July 5th.  I didn't think it would be good to wait that long.  So I took the next available doctor who had an appointment on Monday at 9:30 a.m.  I thought meeting with an oncologist meant double checking to make sure the cancer wasn't anywhere else in my body before we determined treatment options.  Since my surgeon's team was meeting on Tuesday to discuss my case, I thought it would be beneficial to meet with an oncologist to have all my bases covered.

We had such a wonderful weekend camping with great friends.  Plenty of relaxation time, good times out on the boat, watching the kids go tubing for the first time, trying to save a nest of baby birds that had made the trip in the hitch of one of the campers without their mommy (and for those who know me well - please know that I made it my extra special mission to try to save these poor little things!), songs around the camp fire, absolutely beautiful weather (even though they said there was a 60% chance of storms), and eating, eating and more eating!!  Chris had woke up Sunday morning with an eye infection so we drove straight from the camp site back to town with a stop at urgent care.  He couldn't even open his eyes and had extreme pain.  So that left me with the task of unloading the van from camping :)  But that also meant that I would be driving to the appointment the next morning.

On Monday morning, I was a bit anxious thinking about driving 1 1/2 hours through the severe storms to get to the hospital.  We actually kind of followed the storm and didn't get into the extreme heavy rain until we reached Carmel and were only about 10 minutes from the hospital.  We thankfully made it right on time.  We sat and waiting for about 30 minutes before they called my name.  They took us back to an exam room.  We waiting close to another 20 minutes before the doctor (oncologist) came in.  He said he talked with my surgeon this morning but mentioned another name.  When I asked who he was referring to, he said he meant to say Dr. Kennedy.  He said he needed a minute to look through all of my chart.  He said the size of the mass in the lymph node was 6 mm - which is small.  Based upon the lymph node involvement and my age, he said that he would not recommend more surgery but he recommends aggressive chemo therapy, followed by intense radiation and then followed by hormone therapy.  He said that he wanted to run a print out and go over it with me. 

As we talked, his cell phone rang several times and he kept checking it.  Then he said excuse me and took a couple of calls.  He apologized but it was so very distracting and Chris and I really struggled with the interruptions.  He said they would come get us and take us to a consultation room to talk.  But then he came back into the room and had the paperwork.  He had plugged my stats into a computer program to generate a flow chart of what my treatment should be based upon my age, breast cancer and lymph node involvement.  He said that there were a couple of options for the chemo therapy.  The minute he said chemo therapy, he was saying things that I did NOT want to hear and did NOT want to accept as a form of treatment.  So I told him that I wasn't comfortable with the chemo because it would destroy the good cells in my body.  But he said that we need to be sure there are not any little seeds that had been planted anywhere else in my body that would appear in the years to come.  He said that one option would be TC (two drugs) for 4 cycles - this would provide an 88% cure rate.  The other option was the AC-T (3 drugs) that would provide a 90% cure rate but he was concerned about the "A" drug causing heart damage for me since I was so young.  And he didn't want to kill me with the chemo.  He recommend the best option would be the TC every 3 weeks for 4 cycles.  He recommended doing Thursdays for treatment.  He said he would give me several other drugs to help me tolerate the treatment and be able to function at work on Friday - then rest all weekend and go back to work on Monday.  All I could think was that I don't want the chemo in my body at all.  I want to keep my good cells so they can continue to fight for me.  Why would I want to kill my good cells?  He said my side effects would/could be sickness, weakness, extreme tiredness, loss of my monthly cycles and that I would feel totally out of it.  Um... no thank you - is all I could hear in my head.  He said that he would be at the team meeting the next day and would recommend chemo as the next step.  He said to just email him on Tuesday afternoon for an update and set up a time to meet for the first treatment next week.  NEXT WEEK?  Oh my.  I just couldn't believe it.  I asked if I would lose my hair and he said yes.  He said it would be a shock to me since I have probably worn my hair long for some time but that I would look good... how would he know anyway I thought..??  Then he said that my hair would grow back curly.  I really don't want to lose my hair either.  So my mind was just swirling away with so many thoughts.  As we left, he told me to email him on Tuesday afternoon, and he would let me know what the final decision the team determined.  Chris and I left to go to lunch and head home and I was just in shock again.  I couldn't believe that I have to consider chemo.

After I thought more and more, I decided to call my surgeon's nurse and let her know that I would prefer my surgeon to let me know the results of the team meeting instead of following up with the oncologist.  I told her I felt that we didn't have a very good meeting with the oncologist and I would prefer to have Dr. Kennedy pass along the results because we have 100% confidence in her. 

So on Tuesday, I went back to work.  It felt odd walking into the building.  It just felt that I was a different person or something.  I can't really describe the feeling.  It was nice to be back in the office.  I just adore the people I work with and they have rallied around me and been so very supportive.  I had several flower arrangements waiting for me on my desk along with some chocolate :)  I was really hoping to be positive on my first day back at work but I was really struggling.  I was still very unsettled from the meeting the day before and I was trying to accept the fact that I may need to have chemo.  Dr. Kennedy called right after lunch to give me the team's decision.  She said that the general feeling of the committee was that there was no benefit to do more surgery but the correct next step would be chemo.  She said that since the results from the surgery were more serious, we needed to step up treatment and respond more aggressively.  She then asked why we felt our meeting didn't go well the day before.  I explained that some of it was that he was saying things that I didn't want to hear but the biggest thing was him taking the couple of phone calls during our meeting.  She said there has been much debate among many doctors on how accessible they are.  She chooses to wait and return calls later, while he is always available to patients and other doctors.  She said both methods take much heat from all directions.  She said it's very important to feel absolutely comfortable with my doctors.  She said there is no limit to the opinions we seek and we should find a doctor that is compatible with my personality. 


I told her that since we had discussed having my treatment local, that I would like to consult with a local oncologist.  She said that her nurse would call and set up the appointment for me.  That appointment is set for Monday morning at 8:45 a.m.  I had also received a call on Tuesday from radiation oncologist office.  They wanted to know if I would like to have a consultation meeting with them now or after chemo.  She said it was totally up to me and the didn't want to overwhelm me.  So I told her I would really like to meet before.  So she said she would add an appointment to meet them right after my consultation with the oncologist.  I also have a post-op meeting with Dr. Kennedy on Tuesday to go over my final path report in detail and to check to be sure my incisions are healing. 

I want to be sure I understand everything before I make my final decision on treatment.  I have a whole list of questions for the doctor and also our good friend who researches cancer treatment.  I guess I want to know for sure that there is something else in my body to put such strong things in that will destroy my good cells too.  And I guess the oncologist doesn't determine if there is other cancer in my body, they just treat me for what was found.  If there was a targeted chemo therapy that only attacked my cancer cells but still made me sick, I would do it.  I won't bore you with my list of questions, but I am hoping Monday and Tuesday will provide me with the answers I need to feel confident in my next step. 

To be honest, I am really struggling right now.  Thanks again for your prayers.  I really, really appreciate them.  I am praying that God will help me to see clear what my next step should be - even if it is not what I would want. 

Love,
Tammy

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40:31