A couple of months ago, one of our awesome neighbors nominated Lori for a trip sponsored through the Karen Wellington Foundation (KWF) for LIVING with breast cancer. Their motto is #FunNow and they gather funds/resources and organize all-expenses-paid vacations for women living with breast cancer and their families. Karen Wellington, the namesake, was diagnosed with breast cancer when she was 30 and she passed away at age 40 in 2007. Apparently, she was even spunkier than Lori in life, and she had a dream of setting up a foundation like this.
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Last week, we had an appointment with Lori’s new oncologist at our local hospital, Dr. Marinella. He seemed very knowledgeable, and he knew Lori’s history well. His recommendation was to stay on the Cisplatin, but he also wanted her to visit a local radiation doc to look at her brain metastases again. That was great news to us because we had all but given up hope on her being well enough again to even consider getting that treatment. She has really been looking well lately, and Dr. M was actually surprised by her condition when he met her. He told us that he didn’t know what he would see at this initial appointment, but he expected much worse after reviewing her discharge papers from IU (she was in such bad shape). Oh, and he specifically remarked about how amazed he was that he had a patient who had been seen by so many popular oncologists.
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This past week, Lori has been doing well. Her pain is still a zero so I think we have that whooped for now. She is tired however, and this means she naps, and she can’t lift much weight. People scold her all the time about how she does too much, but she’s kind of annoyed by that and doesn’t listen anyhow. I almost never tell her to slow down anymore because I just prefer to let her live however she wants to live. Her mind is strong and has adjusted to the Oxy so she thinks clearly unless she’s very tired. These are good days for her though, and we never take these good days for granted!
Posted May 25, 2015 10:00pm
On Saturday morning, we met earl with the team of doctors taking over Lori’s care for the weekend. We expected them to want to drain the fluid from her right lung just as they had for the left the day prior. Surprisingly, they presented her with various choices all of which sounded pretty good. They talked with us both to find out our goals and motivations, and after our chat, they recommended that we either remove the fluid and stay an extra day in the hospital or leave the fluid and discharge within hours. Their opinion was that the fluid around the right lung wasn’t hurting her ability to breathe. The left lung was fully expanding by then, and her ability to breathe seemed normal. The amount of fluid around the right lung was much less than the left according to the scans and the risks of the procedure (potential lung collapse, bleeding, infection, etc) didn’t seem to outweigh the small advantage to-be gained.
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Last night Lori had very shallow breathing. It was thought fluid was accumulating in her lungs. The Drs planned to give her a diuretic to drain it but it would come with significant risk to her already low blood pressure. Untreated, they said she could die possibly within days. Treating it would have produced significant risks as well. We were stuck making a tough decision between two bad options.
When the ICU team got together to look at her lungs, they found that the fluid was actually between her lungs and the chest cavity…not inside the lungs. Good news! In a very simple procedure, they drained the fluid from her left lung just now. They removed 700 ml of fluid. Normally, people only have 10 ml or so in that cavity. She is sleeping now but I expect she’ll have a lot of relief and be able to breathe better tonight. If she reacts well overnight to the effects of what they did, then tomorrow morning they will do the same thing to the other lung.
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Well, I spoke a little too soon last night. No more than 15 minutes after I posted the last update, Lori started having pains. By midnight, she was having very bad pains rated 8 in her arms. We discussed medication options and eventually just loaded her up with a couple good ones and she finally experienced some relief at around 0230.
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This morning, as he promised, Dr S showed up around 0730 to see Lori. He got all caught up on her recent history, and he examined her body. He asked if she was willing to continue treatment, and she replied that she definitely wanted to. He then left the room to confer with the other oncologists who had also been keeping tabs on Lori, the pain doctor, the neurosurgeons, and the main doctor on her new floor who is also like a hospitalist but specializes in cancer care, and her emphasis is on breast cancer.
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No real big updates today, but we did get moved to the hematology/oncology wing late tonight. It’s very nice, and I’m glad the oncology team rescued us from the sixth floor of doom.
The liver guy never showed up. I’m not sure he even exists at all. Tomorrow, I expect to have a plan from the oncology team. We meet with Schneider at 0730 tomorrow morning.
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I rode in the front of the ambulance while Lori was in the back with the EMT. We drove the 1 hour transit to Indy, and they wheeled her up to the sixth floor to her room in the MPCU. The University Hospital has excellent resources, but aesthetically and common sensically (I know it’s not a word…right?), it is unsettling. The warmth and welcome of the smaller and newer Arnett hospital was replaced with cold, sterile halls and rooms which bare more resemblance to airplane galleys than to inviting habitations for potential healing. I’m being dramatic, but I really did feel a sort of homesickness as soon as we made our way to the new room here at this hospital.
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Went thru the night with minimal pain. Hasn’t needed to supplement w morphine at all. However, today she began to have a new chest pain near the bottom of her esophagus area. Also, her primary Tumor seems to now extend from her breast to this area. Also, stomach bloated very large. We thought the pain was maybe from extra fluid being retained. Tried to buy a diuretic but it requires a rx. So went to ER ar Arnett. They did a CT scan and saw the mass on left chest cavity. They called IU on-call oncologist for Schneifer and they said she should be in Indy with oncology nearby. So, we’re taking an ambulance ride an hour south. I don’t know what they’ll do there. I’m thinking maybe surgery but we won’t know until we get there