Wednesday, January 7, 2009

New Update

Yesterday was chemo day, again, and everything went smoothly. I'm feeling surprisingly well this morning. Maybe my body is getting a little bit used to the drugs?

We continue to have mixed feelings about my medical oncologist. He is nice enough and seems to have a basic understanding of IBC and the standard course of treatment for it, but does not seem to have cutting edge knowledge. He was still unsure about what is going on under my arm. I told him I had found one picture on the Internet that looked exactly like what I was demonstrating and that the caption underneath said it was caused by axillary venous thrombosis (small blood clots in the veins under your arm) caused by the breast cancer. I coulnd't find any other information about this. After I told him this he said we would order an ultrasound. I also talked to him about talking with the doctor from the IBC clinic in Houston and his suggestion that we have a follow up MRI now that I'm about halfway through my chemo treatment. He agreed to this also. We talked to him about drawing blood for tumor markers and following those. He said he wouldn't really use them to inform treatment decisions as their peaking and lowering can lag behind what is actually happening in my body, but did agree to have them drawn. The visit at this point had lasted maybe 15 minutes. He then told us he was sorry, but he had to go. It wouldn't be fair to his other patients to stay longer. This seems to be the pattern of our visits. Does it make sense that we're a bit uneasy with him? I don't like the feeling of always being the one to bring up treatment or diagnostic ideas. I want him to do that and be able to explain them to me.

However, on the more positive side, after we left from getting my chemo, the doctor from the IBC clinic in Tuscon sent an email and had her nurse call us. She would be very happy to be involved in my care. We are going up to Tuscon on Monday to see her (she is a surgical oncologist) and another doctor she works with who is a medical oncologist. We've researched both of them on the web and they both seem very knowledgeable in the treatment of IBC.

After that, later in the evening, a medical oncologist here in Phoenix that has come highly recommended to us called us personally. This was around 6:30 in the evening. He knew the doctors from up in Tuscon and was even familiar with what treatment protocol they might want to put me on. He said he would be glad to take me on as a patient, but wants to let the doctors in Tuscon lead the way as to whether they want to act as my primary doctors and provide care or if he would be my primary doctor and they would act in a more consultative role. All in all, I went to bed feeling much calmer and feel we are moving in the right direction. The medical oncologist that called me last evening said, "This is what it is, but we'll do everything we can to beat it." I liked that.

That's it for now!
Love you all tons!
Martha

5 comments:

Lydia said...

Martha, I'm so glad you're feeling better. Dottie said she saw you this morning and that you looked really good. You are in my prayers and thoughts. I'm glad you are being led to the right places. Remember that we all love you and miss you too! I can't believe how grown up Michael looks! Love ya, Lydia

minteriors said...

Hi Martha,
I've been reading your informative and inspiring blog. I wanted to write today because I can relate a bit with your experiences and frustrations with the medical establishment. I had a medical experience several years ago with a tumor on my ovary. It was a real "eye opener" dealing with the medical field. It made me realize that your health and well being is all in your own hands. The doctors may be there with their protocols but it is ultimately up to you to seek and find the right answers for yourself. I'm very happy that these other doctors are jumping in to help, it is very encouraging, but I'm glad that you are educating yourself to the fullest regarding your illness. I'm also glad that you have Pam there to help you though this. She is always a blessing to me when I'm in need! Stay positive and keep the Faith that you will conquer! Love & Blessings, Mindy

velvet brick said...

Oh my buddy! This is all such wonderful news that is guiding you in a better direction for your treatment! I am so excited that the doctor in Tucson and the oncologist up here are communicating with you and want to 'take you on'!! I have to say, Martha.... I don't think my reaction would be very positive if my doctor, whom I was discussing my health and treatment with, up and decided it was time to go. So yes, I can see where it has been a bit unsettling. Martha, I thank God that you are so pro-active with your treatment. You aren't afraid to research information. You aren't afraid to ask questions. You aren't afraid to talk to your doctor and make suggestions. (well...if you are afraid, you forge past that and still do it!)

You are amazing.

I send prayers, blessings, hugs and love to you! I am so glad that you are feeling better with this round of chemo and we'll be setting them up at Nando's soon!
: )
I love you, Martha!
Love you!
Carol

Jim said...

Hi Martha,
So glad you are able to tolerate the chemo better this time-hope this continues. Your healing journey is filled with peaks and valleys and I am in awe of the way you and your wonderful family are dealing with them.
As I follow your blog, one thing is clear; your instincts have been right on from the beginning. Your inner voice and common sense have served you well, so your discomfort with your care is an important sign.
Hope your trip to Tucson gives you new encouragement.
I'm sending you hugs and prayers for peace of mind and healing,
love, Ruth

Mary Monica said...

Dear Martha,

I have been following your amazing journey via your blog and have been shy about posting a comment until now. I am so amazed and impressed about how much research you have done about your disease and know that it will save your life. Though my breast cancer was a different type than yours (invasive ductal carcinoma which required a mastectomy, reconstruction and chemotherapy)I would applaud anything you are doing to have the utmost faith in your doctors. That your current oncologist would excuse himself (twice) saying he had to get on to other patients when you still had questions and concerns seems unacceptable to me. I would never dream of doing that to my own patients (or their owners) in my small animal veterinary practice. It's exciting that you are seeing new doctors at the University of Arizona and elsewhere who are welcoming you into their practice and sound to be on the cutting edge of IBC. Keep those positive thoughts going...it will help drive the cancer away as effectively as all that nasty chemo. Love and hugs to you!
Mary Monica