Up Staged

I saw Dr. Bose, medical oncologist, at the Siteman Cancer Center in St. Louis on Friday. My entire family went - Marlin, Grant, Lindsay and Aaron - and was included in the consultation. I was impressed by the consultation. Dr. Bose had made several pages of notes, obviously had reviewed all of my test results and asked me to share my story regarding the lump. He spent nearly 90 minutes with me and made several recommendations.
The MRI completed at Freeman on March 25th revealed a "suspicious lesion" in the other breast and a lymph node near the breast bone. The fact that my initial tumor was greater than 5 centimeters and that the sentinal node was positive added with the new information, elevates the cancer stage to III. Dr. Bose recommended that I see a breast cancer surgeon and have more surgery immediately to remove all lymph nodes from the affected side (left) and to get a biopsy of the lesion in the right breast. I have an appointment to see a breast cancer surgeon in St. Louis on Tuesday, April 1.
Dr. Bose plans to have the pathologist review my tissue specimens and plans to repeat some of the tests on the tumor tissue- specifically the HER2/neu which will help determine chemotherapy drugs. He recommends that I get the breast cancer gene test - since I have a strong family history. He also wants to get additional CT scans.
My case will be reviewed by a "tumor board" on Thursday. This board is a multi-disciplinary team of 5 different cancer specialists that reviews my case and makes recommendations for treatment to the primary oncologist. So I'll be a "case study".
Thank you for the prayers, as our travel was uneventful. We ate a nice dinner Friday evening at Joe's Crab Shack - one of Grant's favorite places - and I had a nice plate of shrimp and a couple of margaritas. Shoe-shopping was also on the agenda and I got some cute summer sandals. My birthday was March 29th, I received several birthday cards. Marlin got be a dozen beautiful dark pink roses and a pink iPod nano - which I am really enjoying.
Thanks to Kathy and Lori for sharing their journey and for their guidance and listening ear. Continue prayers and positive thoughts as I move forward . . . .
Love to all - Ellen

Feeling the Power!

I completed my evening devotions as I was resting on my back in bed last night. I dropped my Bible and devotion book on the floor next to the bed and closed my eyes. As I began to relax, I felt a pressure on my lap that was warm and pulsating. I knew it wasn't my pulse, as I was feeling the beat of my heart. My entire body became warm and relaxed and I felt a great peace come over me. I opened my eyes to see nothing, yet the feeling remained for several minutes. I believe I had a divine visit last night, through your prayers and by my faith. I felt His peace and I slept better than I have slept in weeks!
Or I had a major hot flash . . . . . !
Love you! Ellen

The Squeaky Wheel . . . .

Tuesday, March 25, I had a special MRI of both breasts at Freeman Hospital in Joplin. I have had several scans and blood tests in anticipation of the consultation at Barnes-Jewish on Friday. Although Dr. River, my oncologist, has faxed many results and physician's notes, I must carry with me the original mammogram, pathology slides and other scans on DVD, so the team of physicians can review them to design and recommend the best treatment options for me. However, the radiology department at Freeman wanted the original mammogram, too. As I talked with the radiology department on the phone in scheduling the MRI, I mentioned that I must have the mammograms returned to me that day so that I could take them to my consultation. When I arrived to complete the MRI, the receptionist told me that I couldn't get the mammograms that day, as the radiologist would want them to help in reading the MRI.
So I completed the scan, worrying about the fact that I may not get the mammogram films back in time. I understand (from a nurse's view) how "things happen" and items get misfiled, misplaced or simply lost in the system. After I completed the MRI and dressed, I asked the technician for the mammogram films. To make a long story shorter, I called Dr. River and vented my frustration - was I feeling a little out of control?? Dr. River personally called the radiologist and put the reading of the MRI on the fast track. Marlin was able to pick up the MRI and the original mammogram films today! So, the moral of the story is - the squeaky wheel does get the grease and be your own advocate. I am learning quickly to ask alot of questions and question everything! I am so thankful to understanding of the healthcare system and a background that allows me to comprehend the details of my cancer.
Continue your prayers - for save travel to St. Louis, for expert consultation, and God's hand in healing.
Ellen

Hurrah for Arthritis!

Never thought I would be glad to have arthritis, however, the bone scan completed yesterday revealed that I have arthritic changes in the shoulders, hips and knees, but NO evidence of metastasis. So goody for arthritis! The CT scan revealed a lymph node above the left clavicle (collar bone) and a couple under my left arm. Dr. River (oncologist) believes that the nodes will disappear with chemo and radiation, but of course, he is encouraging me to discuss options with the "professors" at Barnes-Jewish next Friday. Options being to surgically remove the nodes, or wait for the chemo and radiation to work.
I am feeling stronger following surgery last week. My pain is minimal and I am taking Ambien to help with sleep, so I am resting well. My incisions are healing fine, the stitches are subcutaneous (under the skin), so won't have to be removed and the steri-strips fell off (with a little coaxing) yesterday. They were kinda itchy, so I'm glad they are gone. I am able to wear a bra pretty comfortably (not comfortable even before surgery!) and haven't used any padding - don't look too lopsided.
Blessed by all the cards, phone calls and prayers. Thank you for that!
Ellen

Opening the door . . . .

Some answered prayers today - He is opening the door. I received a call from the Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis. My appointment is Friday, March 28th. My case will be reviewed by a team of physicians who specialize in breast cancer ONLY. The center is part of the National Cancer Institute, so I believe that the team will have access to the best research and protocols for my treatment. My family and I will make decisions about my treatment after hearing the team's recommendation.
I will have a CT and bone scan at Mt. Carmel in Pittsburg this week on Wednesday.
I continue to receive blessings of phone calls and cards from my loving network of family and friends. I accept them with thanksgiving and praise.
Ellen

Tears -

Yes, I have cried. At first my tears were out of fear, today my tears are out of love. I have been touched by so many people already, so early after my diagnosis. My eyes well up each time someone gives me encouragement and hope.
My prayer last night was for my heart to be open to God's will and blessings - that I may receive them willingly, honestly. And that I may be a witness to His greatness. I have received so many blessings!
My devotion today told me to find the place in my heart where He lives and my task today is to "be quiet" and prepare to listen to His will.
Anyone who has been through this knows - waiting is the hardest thing to do. I understand now, that waiting is really "preparing".

Ellen

Ups and downs

The oncologist called Thursday to tell me that the tumor is ER neg and PR neg and HER2/neu at 2+ - not what we were hoping for. (that's the down) More tests are being completed and I'll get more results when I see the oncologist on Thursday, March 20. I am scheduled for a special type of MRI at Freeman in Joplin on March 25th - to check the remaining part of the left breast and my right breast - in search of more tumors. Still waiting for the appointment at Barnes-Jewish in St. Louis for the second opinion.
My church friends and neighbors have been so wonderful to bring in meals in this week. My family and I have enjoyed the bounty of good cooks! I have received dozens of cards, phone calls and several flower arrangements and a few visitors. I am truly blessed. (that's the up) I told Marlin that our house smelled like a flower shop. (another up)
One of my good friends, K. G., I discovered is fighting breast cancer (diagnosed in August and just finished chemo) She visited me on Friday evening. She was hopeful and encouraging. It was good for me to listen to her insights. She is a brave example for me. We laughed and cried together - and that's another 'up'.
My surgery wound is healing well, but I sure get tired quickly. I am trying to keep busy with some project work at Washburn - the miracle of computers.
That's all for today. Ellen

It was a dark and stormy night . . . .

Well, actually, it was a February day that I went to see my primary care doctor about a "lump" I found in my left breast. I thought it was another cyst, as I had one in my right breast about a year ago. Dr. Salvador sent me immediately to the hospital for a sonogram. A few hours following the sonogram, she called me to schedule a mamogram and a probable biospy. It wasn't a cyst.
Tuesday, February 26th I had a biospy in the surgeon's office. The pathologist report was DCIS - ductal carcinoma in situ and the surgeon suggested I see an oncologist.
I saw the oncologist the next Monday. Dr. River tells me that I'll need surgeon and most likely radiation therapy. I had already done my homework, looking on the internet and in my textbooks. He was optimistic, yet realistic. My optimism kicked in and I was confident that a lumpectomy was all that would be required.
My surgery was March10. The surgeon says it's "more" than originally thought. My next appointment is Thursday and I will know more then.
Keep me in your prayers.