New language immersion

    I thought reading a doctor's signature was tough. Little did I know that understanding what they say is even worse. Now, some doctors are fine and able to communicate perfectly and, thankfully, the primary breast care doctors have both been very open and easily understood. Not so much when you get to the specialists. I get the sense that they know you aren't tracking and they really are fine leaving you with more questions than answers. Ignorant me, I thought you had a primary doctor, a surgeon, and an anesthesiologist when you had breast cancer. Well, so far we have a primary breast care doctor, a medical oncologist, a radiological oncologist, a plastic surgeon, and we'll be adding the anesthesiologist soon. That's hard enough to track but when you double it by asking for a second opinion and throw in the fact that English isn't the primary language for half of them, well, you get my drift.  That doesn't even count for the countless nurses, interns, and other folks that tell you to get undressed and wait.

    Yesterday was one of those days. We knew we had a meeting with the medical oncologist and I wanted badly to be there because it is so crucial to have at least 2 sets of ears listening to these doctors.  I met Joy at KU Med Cancer Center and we found out that we had been directed to the wrong campus for the doctor we needed. Apparently, they aren't sure where any of them are either. OK, cheap shot but I was aggravated.  We got back into our cars and found the other campus and began to wait for the oncologist.  Another doctor ( we have no idea who she was other than she seemed to be connected. Intern? Probably.) examined Joy, made lots of notes in and incredibly random fashion on the back of a blank sheet of paper, and left the room. A short time later, the medical oncologist came in and did the same exam but without any notes this time. He then began giving us news and options at a pace that felt like we were suddenly taking a drink from a fire hose.  He wanted Joy in a clinical trial, blah, blah, blah.......... I confess I left the conversation some time around his comment that we'll leave the tumor in there for another 4 to 6 months and then decide on what type of surgery is needed.  Then he tells us that no reconstructive surgery will be needed. Excuse me but I fail to see how you can take a chunk out of a breast the size of a scoop of ice cream and not leave the breast mangled.  Not one of the other umpteen doctors has even mentioned that as a possibility. That concluded her first doctor visit of the day.

    Joy then had an afternoon appointment with the Radiologist (back at the other campus) for an MRI biopsy on the left breast (again). They are worried that the area under and behind the original tumor may be a second tumor and wanted the added detail of the MRI to guide them in the process. Poor Joy endured about 90 minutes face down on the MRI cart trying to keep perfectly still while 2 doctors did their best to locate the area, mark it, and then do the biopsy. I think she said they slid her in and out of that machine 4 or 5 times. After it was done, she noticed pain that hadn't been present on the other biopsies but figured it was due to the fact that this one was very deep in the breast and up against the front of her chest wall. She left to drive home and felt increasing pain all the way. After calling the doctor, they wanted her back right away so I ran home to pick her up and off we went, in rush hour traffic, back to the hospital. By the time we got there her left breast was severely swollen and very painful.  Another sonogram revealed an 8cm pool of blood inside the breast (about the size of a fist) and that they apparently nicked a blood vessel during the biopsy.  There is very little they can do about it but wrap her chest very tight and keep an ice pack on it most of the time. It may take months for the blood to be reabsorbed unless they can figure out a way to drain it. We have no idea what impact this has an any possible surgery or reconstruction.  Sigh.............

   The worst part is seeing Joy in such pain. She is a trooper and handles pain way better than I ever will (what woman doesn't do better than their man?) but that part has been where I feel the most helpless.  She goes back today for yet another sonogram and to meet with the Radiologist. Thankfully, Elizabeth rove up from SE Kansas last night and will go with her.  We were warned that the next 6 months were going to be tough and I'm sure this is only the tip of the iceberg but it's obvious that we are just beginning to understand this journey and what it will take to get to the other end. One day at a time, one step at a time.