Wednesday, June 29, 2011

Treatment

I was having a really down couple of days when I wrote my last post.  Thanks so much for letting me be transparent. I had lost sight of knowing and resting in God's perfect plan for my life.  I was struggling with treatment options and all of the fear and uncertainty.  I have had so much to think about but the meetings this week have helped me refocus a bit. 

We had a couple of good meetings this week.  Monday was our first consultation with my local oncologist, Dr. Kakani.  We really liked her.  She went through my history and pathology report to understand everything.  She said she was also going to call my surgeon to discuss things to be sure she has all the information.  She also ordered blood to be drawn and tested and a pet scan for next week.  That made total logical sense to us.  That is what I thought an oncologist would do - get a baseline on me after surgery and before we do any treatment to see where I am at.  Because I wondered - what if it was somewhere else??  She also wanted to wait 4 weeks from surgery to allow my incisions to heal from surgery before starting the  chemo.  I asked her about alternative forms of treatments.  She said that chemo is they only thing they have now to work with.  She said we want to get as high of a cure rate as possible.  I asked her about diet and nutrition.  She said all of that would be fine.  I just wish oncology doctor's offices would educate people more on that for during and after treatment. 

She had wondered about taking all of the rest of they lymph nodes from under my arm.  She was going to discuss this with Dr. Kennedy.  They set up my pet scan for next week and then a follow-up appointment with her the next day.  And I have to say that the lady that drew my blood there was absolutely fantastic!!!  She took 4 vials and I hardly felt anything and it went really fast. 

Yesterday's meeting was my post-op appointment with my surgeon.  There is still some swelling but everything is healing well.  When I asked my surgeon about alternatives to chemo, she said that the have good data on chemo and we don't want to focus on a 5 year survival rate but a 50 year survival rate. We talked about not doing the surgery of taking out all the lymph nodes under my arm.  She said that she doesn't want to do things because they have always done them a certain way.  She wants to do what is best for me and my case.  She will talk with Dr. Kakani and the new radiologist that will be coming in August to determine what is best for me and extreme long term survival. 

I stopped in the shop at the hospital to briefly look at wigs and head wraps.  I still feel in denial that I am going to lose my hair.  I just cannot believe it.  They gave me a packet of information to look through and the side effects just make my stomach turn.  But I know that I can trust God's plan in this and He will hold me tight through all of this along with my family and friends.  I also know that my sweet Adam is good with picking out clothes and glasses that look good on me.  So I plan to have him assist me in the head gear process. :)

I am currently doing natural alternatives to fight the cancer in my body.  I have also made a lot of diet changes.  I truly wish that I could only do these alternatives and decline on the chemo.  But I am too worried about human error on my part in doing these steps. I am so very, very thankful for the support from Noreen and Pat! 

I am so thankful for all of the cards, notes, messages, calls, hugs, meals that we have received this week. 

I'm tired so I am going to bed now.  As Sarah prayed tonight, "Dear Lord, please take away all the cancer in Mommy's body and make her better."  In Jesus name Amen!

Love,
Tammy

Wednesday, June 22, 2011

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 
 

Friday, June 17, 2011

Pathology report from surgery

My doctor called me with the pathology results from my surgery last night.  

Unfortunately, they did find cancer in 1 of the 3 sentinel lymph nodes.  So they have diagnosed me with Stage 2 breast cancer.  But they were able to get a clear margin around the tumor which is good.  The tumor was only 2 cm and she said it was smaller than originally measured on one of the films.  She said her next step is to present my case to her team next Tuesday.  Together as a team, they will determine what the next best step would be for me.  So this may mean doing another surgery to remove the remaining lymph nodes in the hollow of my arm pit.  Or she said, it may mean that treatment will be sufficient.  She said that she was very optimistic that the other lymph nodes would be clear.  With my age, she said that her focus is for very long-term survival.  So if we need to go back in for another surgery, then that is what we will do to strive for the very long-term survival.  They will call me today to set up an appointment with a medical oncologist.  She also said that after I met with this oncologist, they would help me to find treatment her locally so that I would not have to drive to Indy for any treatment. 

I will be honest to say that I really struggled with this news.  Not what I had hoped to hear and it brought back so much fear and worry that I had experienced with the first diagnosis.  I also feel like there is more uncertainty again.  Our good friend who studies cancer and cancer research told Chris that the cancer being in the lymph node is not necessarily a bad thing. He said that is the body's natural defense against the cancer. I thought that it meant that it was spreading through my whole body. He said that the body detects the cancer and takes it to the lymph nodes as a defense mechanism.  I would like to talk with him more to understand this process. 

Adam was very quiet and Sarah was very upset with the news.  I laid in bed and talked with her and prayed with her to try to help with all her worries.  She thought that this meant I was going to die really soon.  She said she didn't want me to go and that she would always love me no matter what.  It just broke my heart and I told her she needed to trust God with me and know that He is in control and He is with us.  She and I read through the Matthew 6 passages on worry this morning.  Adam asked some detailed questions this morning.  He wanted to know if the cancer was a lump in my armpit and wanted to know if you could feel it. 

I don’t know God’s plan for me with this struggle yet but I know I need to trust Him every step of the way.  Even though this path will be difficult and it's not what I would have chosen, I know in my heart that the Lord has a perfect plan through this entire journey.  

Thank you all so much for your support and prayers.  I am so overwhelmed by all the support and know that we will need it in the weeks to come. 

Love,
Tammy

Tuesday, June 14, 2011

The day after surgery.

Yesterday (as I remember it :)) - we left the house at 4:30 a.m. and made good time getting to the hospital.  We checked in at registration a couple of minutes before 6:00 a.m.  We were only there for about 5 minutes and then they walked us over to radiology to check in for my first procedure.  They said my procedure wasn't scheduled until 6:30 a.m., so we would be waiting awhile.  They didn't call us back until 6:50 a.m.  (The cool thing is that Chris was able to stay with me through all the pre-op procedures)  This was the dye procedure to "light up" my sentinel lymph nodes for the surgeon.  After she inserted the dye, she said she would have to take some pictures.  I would need to lay still for 5 minutes for each picture.  I had an anxious moment thinking back to the MRI.  I asked how the pictures would work.  It was only a square that came down around my chest and it was open so it was no problem at all for me.  They the walked us over for the wire localization.  The radiology doctor that performed this was a Purdue grad - so it was fun to chat with her.  She explained that she would be inserting two wires.  She said that Dr. Kennedy also wanted to remove another spot about 2 cm from the tumor site.  They said it looks like a calcification but they want to remove it all to be sure.  That was the first we had heard of that.  This doctor said that they would have me sitting for this procedure because it common for patients to faint. She said to be sure to tell them if I started to feel funny at any time.  Thankfully, I never felt funny at all.  Then we waited while they got me a wheelchair to take me over to surgery.

We arrived there at 9:00 a.m. The nurse checked my temperature and my blood pressure and my blood pressure was a little elevated... imagine that! :)  The hooked up my IV and started me on some fluids.  She said things would move quickly because they wanted to have me to the operating room by 9:30 a.m.  Then she left and a Chaplin stopped by and asked if we wanted to pray and he prayed with us.  Then we kept waiting and waiting.  This wait was the hardest wait of the day.  Finally the anesthesiologist came in at 10:05 a.m.  He said they were running behind.  He went over everything and said he didn't anticipate any complications.  He said he would be with me the entire time watching over me and making sure things were alright.  That helped ease a little of my anxiety.  He said they should be coming soon to get me.  They finally came at 10:20 to take me into surgery.  All of the waiting and saying goodbye to Chris got me tearing up.  This nurse was also a Purdue grad.  She wheeled my bed to the door of the operating room and then asked if I could walk in. I thought that was kind of funny.  So I walked in and sat down on the table.  There were two small tables sticking out of the operating table for me to put my arms out on.  Then I could feel the tears keep coming.  I told them I was sorry and I wasn't sure why I couldn't stop the tears.  Then the anesthesiologist came in and said hello and said he was there to stay with me.  He said he just put something in my IV to help me relax.  Then I remember them putting an oxygen mask on and telling me to relax and take a deep breath ...and that's all I remember.  I didn't even get to see my surgeon.

Then I remember hearing something and it was a nurse talking to me telling me I was in recovery.  I couldn't believe I was in recovery.  Then she started asking me about my pain level and where it was on a scale from 1 to 10.  I think I said it was about a 7 and I told her my throat was hurting pretty bad from the breathing tube during surgery.  She got me some ice chips and asked if I had anyone waiting for me that I would like to come back.  So she went and got Chris and I was glad to see him.  Then I started to feel really hot and felt extremely nauseous. They put a cold wash rag on my head and put a tiny moist cloth on my nose to breathe for aromatherapy.  It helped, I was so glad I didn't get sick.  But I felt so tired.  I couldn't keep my eyes open.  What felt like 5 minutes to me - Chris said was over an hour that I slept.  She asked if I wanted any crackers or teddy grahams.  Once I ate a little it and had some apple juice I was feeling much better.  Then once I was able to get up on my own and go the restroom, they said I could get dressed and go. We walked in the door last night a little after 5:00 p.m. 

Thanks so much for all of your prayers.  I am feeling a little more tired and sore than I thought today.  I didn't elevate myself enough last night and woke up with some pretty intense swelling and pain.  As I was trying to refill my ice pack, I felt like I was going to pass out and then I felt nauseous again.  But it went away and I slept in the recliner the rest of the morning.  My mom hung out with me all day and we even took an afternoon nap. 

Adam has a baseball game starting right now - 5:30 - wish I could be there to cheer him on!!  

We will post more once we hear the pathology results.

I need to go get some more rest.  Thank again so much for your love, support and prayers.
Love,
Tammy

Saturday, June 11, 2011

Monday is the day...

As we have been in this long holding pattern, I have not been sure what to blog.  I have had a full range of feelings and emotions.  I am very anxious for the surgery yet my mind wanders about the "in depth" details of the whole procedure and the anesthesia.  But I fully trust the surgeon and her staff and know that I will be in good hands. 

We met with the surgeon this past week for a pre-op consultation to go over everything and sign my consent forms. Chris and I were very surprised at the anticipated recovery time.  I will be able to resume most normal activities as soon as I feel up to it.  I was glad to know that I will be able to shower as soon as I take off the bandages the next day.  The stitches will all be internal and I will only have steri strips that will come off on their own. 


On Monday, we have to check-in at registration at 6:00 a.m.  (Which means we will be leaving the house at 4:30 a.m.!!)  They will take me in right away to start the pre-surgical procedures.  Chris will get to stay with me through these two procedures.  One is injecting the dye for the sentinel lymph node removal - the other will be a radiologist inserting a wire at center of the tumor so the surgeon knows exactly where to start.  We anticipate being home by the afternoon.  Either Chris or I will update the blog on Monday to let you all know how things went.  They said we should know the pathology results by Friday.  At that point, we will know what the next steps will be as far as meeting with an oncologist and determining treatment, if any. 


We appreciate all of your prayers, meals, cards, hugs and encouragement.  Our neighborhood friends will start with meals tomorrow and continue the next two weeks.  We absolutely love our neighborhood and feel so blessed to have such good friends. Everyone has been so go to step in and help with so much.  Thank you all so very much.

As Sarah would say - "night, night - meow, meow"
Love,
Tammy