Tuesday, November 24, 2009

Yesterday I saw the oncologist and the breast surgeon.

The oncologist is a numbers guy.  He did a great presentation on the statistical outcomes of chemo based on my particular case, which he described as 'one that makes them scratch their heads.'  Since I have had surgery and plan to have radiation I have a 25% chance of re-occurrence, if I add Tamoxifen my re-occurrence chances drop to 15%, if I add chemo it drops to 12-14%.  So chemo only gives a 1-3% benefit.  He said most women choose to do chemo even though there is little benefit but most men choose not to.  I asked what he would do and he said he would tell his wife to take it, then I said, "No, not your wife, what if it were you." He replied that he would not take chemo for such a little benefit.  So, of course, I told him I am not taking it.  He said I was not crazy to make that decision.  But he does suggest Tamoxifen.  I suppose a 10% benefit would be better than none, but I am reserving my opinion on Tamoxifen until I do further research.

The breast surgeon discussed another option.  This one would eliminate the need for radiation and would greatly reduce the chance of re-occurrence in that breast.  The option was nipple sparring mastectomy.
As wonderful as no radiation and slim chance of re-occurrence sounds, I don't like the thoughts of mutilation.

I can wait until January to make any decisions.  If I decide before then to start radiation I can do so.  The sooner I start the sooner I will finish.

I am currently reading "Knockout" by Suzanne Somers.  I am just getting to the part about alternatives to chemo, surgery, and radiation.  I am hopeful that I will read something that will help me make the best decision!

Happy Thanksgiving!  This year be thankful for your health!

Love to all!!!

Thursday, November 19, 2009

I am a bit calmer today than I was yesterday.  I know the oncologist will not be able to provide me with names of people to talk with because of Hippa (sp?) laws.  I do, however, find it interesting that if you are hiring a plumber, electrician, builder, or even some one to cut your lawn or cut your hair you can ask for and get references, but not for doctors.  You have to count on the recommendation of the referring physician. 

I'm not interested so much in talking with patients who took chemo.  I am more interested in finding long time survivors who did NOT take chemo even when it was recommended and what they did as an alternative. 

I ran into an acquantaince today who asked why I wouldn't do radiation before chemo like they do in England.  Makes sense to me.  It was interesting to consider that they do it that way in England but not here.  Makes me wonder why. She also told me she would pray for me.  I felt very blessed by this because she is a super prayer warrior!

Several people have asked me what I think of the recent news of a government study regarding mammograms.  Well, my first thought was, how interesting that in this time of the government talking about taking over health care they would suggest mammograms are not necessary before 50, then only every 2 years.  It feels like socialist conditioning. They are trying already to sell us on the planned cuts!  When I was in for the vaginal voyage, the tech told me  that the day before they had a 15 year old girl diagnosed with breast cancer.  Fifteen!  Did the government consider how we are pumping hormones into the beef, chickens, and dairy products thus increasing our risks for cancers and at an earlier age?  They are insane to suggest that it not helpful to do self exams!!!  I found my lump.  We know to check our breasts.  It has been drilled into our heads.  Thank God!  Now they are going to suggest not doing self exams and waiting on mammograms.  OK, fine, let's start with all the women and wives in government...let them wait till 50! Let's see how that works out. Study their results for about 10 years. OK a bit of a tirade tonight, but surely everyone is outraged by this report! I don't consider myself to be a crusader, just opinionated!  If you know me, you know I have opinions.

In better news, the pool is moving right along.  Today they put in all the steel and drains! They say the plan is to shoot the concrete on Monday!  Looks like we will have a pool by Christmas!  Maybe I should start planning a New's Years party!
Someone emailed me and asked me how to get email updates from this blog so they wouldn't have to come directly to the blog.  I can't quite figure out how to add a subscription button to the right panel,  but I can tell you how to subscribe if you wish.  Click the 'comments' button then below the post a comment box you will see 'subscribe by email.'  Just click that link and sign up.  Hope this helps!

Wednesday, November 18, 2009

Yesterday I got to take a voyage...I had a transvaginal pelvic utltrasound! When you hear the word transvaginal doesn't it just make you think like Trans-Atlantic??? This voyage wasn't even associated with the cancer cruise! It was actually ordered by my GYN back in July, I just hadn't taken the time to schedule it before our trip to England then when we got back I hopped right on the cancer cruise and kind of forgot about the transvaginal voyage! I don't even really know why the GYN ordered the test, but I will know tomorrow morning because I have scheduled a visit with her to have my Mirena IUD removed. Actually delaying the voyage turned out to be a good thing, here's why...no one (neither I nor the doctors) had discussed the IUD. I had thought of it once or twice but I have been so concerned with my northern anatomy that I haven't paid attention to the southern regions! Since I had to go get this test, it brought my attention to IUD, so I came home looked it up online and turns out that this IUD is not appropriate for women who have or had breast cancer because it releases a hormone that may contribute to cancer or interfere with treatment! WOW!!! I keep learning how important it is to be your own advocate!

Today we saw the radiologist. He basically agreed with DR Rahm that it would be OK not to remove more lymph nodes, radiation can hit that area. He also said the radiation should not interfere with future surgeries when/if needed. Now, if he had just stuck to his topic of radiation I would have left there feeling like it was all good news, but no...he had to venture off into areas that aren't even his specialty! He said the oncologist will mostly likely recommend chemo now that I have been upgraded from Stage 1 to Stage 2. (Normally upgrades are a good thing but not on the cancer cruise...it means there are many more days of rough seas.) He made light of loosing your hair and feeling like shit. He even went on to say and I quote, "It's better to over treat." Is he crazy??? Well, I was seething! Seething to the point that I was getting an instant headache. I simply said that I was not having that discussion right now and that I would discuss it with the oncologist. Once Jay found out how irate I really was he told me that I handled the discussion with grace and professionalism. It's good to know that I can be gracious instead of ripping someone's head off!

I am still adamant about not taking chemo. If the oncologist recommends chemo, I plan to ask for references of 10 women with the same age range and diagnosis (between 45-50 with Stage 2 invasive, ER+, HER2 nuetral, minor lymph node involvement) who took chemo and have been cancer free for 10+ years. I also plan to ask him how many fit that criteria that did not take chemo and what their outcomes were. I want references! I would even like to ask him why he chose to be an oncologist...needless to say I have my thoughts as to why...$$$ Even sitting here thinking about it now makes me so mad!!! It is as if the medical community is just trying to find any excuse to suggest chemo! Having been diagnosed with breast cancer doesn't make me angry. But how they keep bringing up chemo makes my blood boil. It's like the salesman who won't take no for answer. No, I don't want to prolong my cruise. No, I don't want to ravage my body with chemicals that will make me sick, hence my same reasoning for not doing crystal meth! I know I have to work on this emotional issue. I know ultimately I get to choose my treatment. But having the chemo topic come up over and over again is as frustrating as a telemarketer's call during dinner...every night, night after night after night! Please stop!!!

OK, OK,  enough...I will try to get off my tirade!

You know, you go to appointment where everything in your life is at stake..your quality of life and possibly even your life span, then you leave and continue with the tasks of the day, as if it were any other day.  My day continued like this...I went to the fabric store to see if they had more orange, wide wailed corduroy for a jacket I have cut out but need one more yard, (they didn't, so I will look online). I went to pick out pavers and tile for the pool.  I came home and helped Victoria cram for a menu test for her new job. Once Victoria and I finished, and she was off to work,  I went to the back yard to survey the work that had been done on the pool today! This morning we had a back lawn, this afternoon we have this...I can really see a pool coming!


Thank you Jay, for giving me something to occupy my mind and something to look forward to!

Love to all!

Friday, November 13, 2009

The cruise continues, some smooth sailing, some rocky seas, and I would just love to get to port so the cruise would be over!

Today I went to the DR for my surgery follow up,to discuss test results, and future treatment options.

Everything is borderline...the one lymph node that showed .3cm of cancer is just above the recommended non-surgery line of .2cm. In other words anything less than .2 they do not do surgery. She said 9 out of 10 times that she goes back in to remove more lymph nodes there is no further cancer, but one time there will be. Radiation may be able to catch any remaining cells. She advised that we discuss it with the radiation DR and get his opinion. As for the margins in the breast tissue having more cancer, she discussed that with a group yesterday and the consensus was to let the radiation take care of that. If more surgery is performed for the lymph nodes she will take more breast tissue too. If the lymph node surgery is performed it will be the bad kind where I would loose several nodes, have to have a drain, and have to be extremely careful with that arm for the rest of my life. I told her my vote is to NOT do that surgery. This was a great lead in to the next discussion....

I asked her if she knew of a good breast cancer nutritionist. She immediately recommended an internal medicine DR who specialized in complimentary services. She then went on to tell us about http://www.lef.org/ The text on their site says "Life Extension is a global authority on nutrition, health and wellness as well as a provider of scientific information on anti-aging supplements and therapies. We supply only the highest quality nutritional supplements, including minerals, vitamins, herbs and hormones." Dr. Rahm told us about some patients who have done very well by changing their diet and adding supplements. She recommended 2000 mg of vitamin D3 per day, plus tumeric, flaxseed, and avoiding acidic foods. We were pleasantly surprised at how much information she shared and how supportive she was. Jay said he likes her better every time he sees her. She even mentioned one patient who was opposed to chemo and how she boosted her immune system and had fantastic results.

There is just so much information to absorb, I am feeling a bit overwhelmed with whole learning curve. Learning new software or how to use a new cell phone is nothing compared to this!

Gotta go company just pulled in the drive!

Love to all!

Wednesday, November 11, 2009

More good news and bad news.

In good news my HER2 test is falls in the low to intermediate range and my OncoDX test is good.  This means chemo probably will not be recommended.  Tamoxifen is recommended, which reduces my chances of re-occurrence to about 13%.  I asked what are the odds of re-occurrence without the drug but Dr. Rahm didn't know the answer to that.  She is setting up an appointment with an oncologist, I will ask the oncologist.


In bad news, on further testing, one lymph node (of the 3 removed) showed .3 cm of cancer.  Dr. Rahm is having that retested.  If it is indeed only .3 cm then nothing further will be done, they will let radiation take care of it.  If however it is more than .3cm then more lymph nodes will be removed.

In further bad news, the extra breast tissue removed came back with more cancerous cells. It is DCIS, in situ, which is the non-invasive type.  Since the margins are not clear  I will likely have probably another surgery to remove more breast tissue.  Dr. Rahm said at least 3 times in our brief conversation that she likes to have clear margins.

To recap...good news probably no chemo...bad news probably more surgery.

I see Dr. Rahm again on Friday and should know when/if there will be another surgery.

Tuesday, November 10, 2009

Today Nancy and I went to the Get Motivated seminar in Orlando.  I didn't know how long I would last but ended up staying all day.  After the seminar we came home and picked up Jay and went to Genuine Bistro for dinner.

The seminar was great and very motivational.  Rudy Giuliani mentioned when he was diagnosed with prostate cancer how thankful he was for the knowledge so he could seek treatment...this really touched me...it was an interesting perspective...and very true...we can work with knowledge and sometimes what we don't know can hurt us!

Tonight I feel I may have pushed it a little too far today but am very thankful that I was able to attend the entire seminar and get filled with information and inspiration that I can use for my life and share with my family, friends, and clients!

The re-occurring theme of the day was to have faith in God, help others, and be thankful!

I am thankful that Nancy came down to help out in our time of need and I am thankful for all the love and support from all of you!

Love to all!!!

Monday, November 9, 2009

Well I have survived two surgeries...one to remove the tumor and a second to remove more breast tissue and a lymph node to see if the cancer has spread, which thankfully the first report shows that it has not!

I am declaring myself cancer free!  After all the tumor is gone and it isn't anywhere else!  The medical world probably doesn't agree with me as they keep running more tests hoping to find some reason to suggest chemo.  I am completely opposed to chemo.  From what I have read we all have cancer cells in our bodies and our immune system fights them off unless there is a site of trauma (think testicular cancer for male bike riders and perhaps tight underwire bras for females) or a weaken immune system.  I am learning how important diet is to our overall well being and how terrible the US diet is, actually contributing to cancer cultivation.  I know I need to change my diet. I could spend lots of time reading and researching but I wold prefer to find a nutritionist who specializes in women who have been diagnosed with breast cancer. If  you know of anyone please let me know ASAP.

Saturday, November 7, 2009

Today is the thawing out day.  All the anasethia seems to be out of my system and I can feel the pain.  I haven't taken any pain pills today...I am trying not to take any more than necessary plus I don't want to just sleep all day.  Not that I can do anything other than read and watch TV.

Yesterday I watched an interesting DVD on how nutrition can help heal cancer and I watched a Wanda Sykes DVD that Danielle sent, it was hilarious!

Nancy is taking good care of us. Her and Jay are off to the health food store now to stock up on all the healthy things we need.

I have declared that I no longer have cancer...they have removed the tumor and surrounding tissue and it was not in the lymph nodes...so shouldn't that qualifiy as no longer having cancer???

I am hoping to feel well enough tomorrow to go to the beach for a bit!

Love to all!!!

Friday, November 6, 2009

Thank you everyone for your prayers, positive energy, and good wishes.

THEY WORKED!!!

I had my surgery yesterday.  More breast tissue was removed plus I had a sentinel node biopsy.  The sentinel node is the first lymph node that is on guard for germs and disease.  They take that node to see if the cancer has spread to the lymph nodes.  If they find cancer cells in the sentinel node they take out more lymph nodes.  When the surgeon took out my sentinel node a pathologist immediately tested it and it was negative for cancer cells!  This is the best news we could receive.  Although I'm not fully cleared yet...the will send it to a lab to completely dissect it, so there's still a small chance that something will show up.  If that's the case, then I will have to have more surgery. SO...keep up the prayers, positive energy, and good wishes!

Today I am very sore and tired.  I have to keep my left arm elevated and can only type with my right hand.  Sitting upright is making me kinda dizzy.

Next Friday I have a follow up appointment.  Radiation starts in 3-6 weeks.  Still waiting on HER2 test results and Onco gene test (to see if I am genetically pre-disposed to breast and ovarian cancer.)

FL Hospital was very warm and caring with the exception of the outpatient surgery waiting room, which was loud and bright!  It didn't help that I was developing a caffeine withdrawal headache.  In the surgery prep area they gave me a caffeine drip through the IV...that was strange, I started tasting coffee coming up from my stomach into my throat, and felt dizzy.  I think it was too much so they stopped the drip.  The good news is that I did not wake up with a massive headache like last time.  I was glad to get real coffee this morning!

My pain med is hydrocodone but you know I am not much on pain meds...I am trying to take as little as possible.

That's my update for now...I am getting quite dizzy!

Jay was too exhausted to call anyone last night so I hope this update helps!

Please keep in me in your prayers, positive thoughts, and good energy. It is working!!!

Love to all!
Rhonda

Tuesday, November 3, 2009

Busy...busy...busy today and tomorrow working with clients and getting the house ready for downtime including laundry, grocery shopping, bill paying, and general cleaning.  My sister-in-law, Nancy, is coming to stay a week, I am sure she will be a great help to us all!

Last night I spent some time looking up Tamoxcifen and Herceptin....OMG the side effects of those drugs are horrific including headaches (which I already suffer with,) depression (in 30% of patients,) blod clots, lung problems, and even the potential to develop other types of cancer!  Needless to say I did not sleep good.  I kept waking up with all this on my mind and wondering why surgery and radiation isn't enough.

Today I am working with a client who is a nurse and is extremely into to natural health and raw food.  She has some information to share with me.  I can't wait to hear about it!

I am still praying constantly that the HER2 test comes back normal and that the cancer has not spread to the lymph nodes...all prayers will be appreciated!  I told Jay this morning that I need to go to the beach and put that out to the universe.  Hopefully I can do that on my way home from Palm Coast today!

The closer it gets to surgery the more anxious I feel.  I am glad I am going to be busy!!!

Love to all!
Rhonda

Sunday, November 1, 2009

My visit with my dad went pretty well.  He is planning to leave tomorrow (Monday) morning.

I've felt better than I would have expected.  I keep joking and saying that I am just getting over the first surgery in time for the next surgery!

We went to Inlet Harbor last night.  We were all dancing and having a good time until all of a sudden I started feeling pain in my incision site...probably not a good idea to be bouncing around with surgery stitches!  But we had fun!

I think the next surgery will be a bit harder to recover from.  I read the beautiful brochure from the doctor which explains the lymph node surgery and it sounds like a difficult recovery.  So this time I get a bit more lumpectomy type surgery plus the lymph nodes :(

In better news, my sister in law, Nancy, is coming down on Thursday to help take care of us!  She will help with some cooking and cleaning, plus she if funny, and she is good for Jay.  I have to make sure someone is looking out for him, cause let's face it, he is going through this too.  She may be good for Victoria too, although for the most part I think Victoria isn't really processing all this, perhaps that's typical of a teenager.



Not much other than that is going on here.  I have been too busy to think about what is facing me on Thursdsy ... maybe that's a good thing!

By the way...a shout out to my coaches group...sorry I won't make Thursday's meeting.  Someone please email me and let me know what I missed!

Love to all!!!
Rhonda