I've had a few more appointments since February 3rd when I last posted. The first appointment was with Paige Campbell, the social worker at the University Cancer and Blood Disorder Center. We will continue to see her as our breast cancer journey continues. Paige is there to help us (us being my husband and I) with moral support and such. Our visit with her was good.

Yesterday, we met with Karen Williams, the center's palliative care nurse. She's very good. She's overseeing the care I receive from all areas and to make sure I am comfortable and have accurate information about what is going on. She has the ability to write prescriptions for pain management and other symptoms as they arise. John and I like her very much and feel that we are finally getting somewhere now that she's watching over us. She spent a lot of time with us and was very kind, caring and straight forward with us. I want to stress that until we have the results of the tests to be done on Friday, we can't determine what stage of cancer I have; however, Karen did go over the timeline of tests and events that have happened since I walked through the University Cancer (blah, blah, blah's) doors in September. She's going to be grabbing every missing puzzle piece (like the thoracic and lumbar MRI's done in December) and adding it to the growing pile of information on me. She is firmly situated as a part of my medical team to help me. For the first time, John and I feel like we are getting somewhere. She will be keeping in contact with me by phone, in addition to future appointments. My next face to face visit with her is on March 11th. I see Dr. Huang for test results and Paige for counseling on February 24th.

Here are the highlights of our visit with her yesterday:


Unless the tests show otherwise, they are treating my cancer as stage 4. I am no longer considered curable. I am in the category of "life prolonging". The skin thickening on my right breast was causing more alarms with the doctors and techs than they ever let on to me. Had I not told them where to look, they would have continued to miss the tumor in my breast.


I have suspicious nodules in my lungs. That was news to me. It does explain why I feel like I'm breathing underwater, have chest pains and go through coughing spells. The PET Scan should show more.


The suspicious area on my left rib (as Huang described it), is actually a large area in my back - the same area where I've been having severe pains that every doctor I saw was calling angina. Looks like I've been taking nitroglycerine pills for no reason. It is looking like it is breast cancer that has metastasized into the left back area of my rib cage.


Some of the nerve pain I've been having might be because tumors are pressing on certain nerve areas. This is what I was thinking all along, but couldn't get anyone to buy it. Again, hopefully PET Scan should show what is going on.


Karen believes that my cancer has been here a long time, but everyone was looking in the wrong place.


She thanked me for deciding to stay with and give University Cancer ... another chance. She feels my case has been grossly mismanaged from the beginning. She is going to see that that does not happen ever again.


I told Karen that even though I have an appointment with Dr. Elizabeth Smith (primary care physician) in March, I am going to cancel it because Elizabeth is affiliated with St. Mary's Hospital and does not accept Medicaid. I can't afford her otherwise and I would have to apply for St. Mary's charity/low income assistance. I'm sick of doing this. Once again, Dr. Huang gave me a useless referral. I found another Primary Care Physician who is in network with Medicaid. There is a 60 day waiting period before I can see him (through Medicaid). The 60 days is up in March. Karen will make an appointment with him for me.


Speaking of referrals, Dr. Gunn (surgeon) will not be needed either. Mastectomies are not done on patients with distant metastasized breast cancer.


The lumbar MRI scheduled for Friday will hopefully shed some light on the suspicious area in that area of my spine.


My brain is still free of cancer.


Karen will be fine tuning my pain medications once the test results are in. I am needing stronger meds, especially since I can't sleep longer than two hours at a time during the night. She recommended that I up my dosage of Gabapentin as some peripheral neuropathy is coming back.


Generally with stage 4 breast cancer, the first treatment is radiation to knock it down in the bones. There is a good possibility that this will be followed up by oral doses or infused doses of chemo. We can't use the same drugs that were used last time.


I am not end stage, end of life. I am going to be receiving treatment to make me comfortable and prolong my life. I have felt that I was at this stage for a long time. Right now, I'm trying to get used to the idea that this is really happening. Not sure how long that takes ....