Great news!

Mom saw the oncologist today and is doing much better. After only 2 weeks on her medications, one of the nodes has disappeared (it was as big as a walnut) and the lesion on her back is 80% improved. Amazing!!

She still has some fluid in the lining of her lung, but it is accumulating at a slower pace. She's still short of breath, but nothing like she was last weekend. This is all really great news. Clearly, her cancer is responding well to the treatment. Thanks to everyone for your thoughts and prayers.

Good report

Mom is feeling MUCH better today. Aunt Nancy is obviously very theraputic!

I checked in with Mom a couple hours ago and she sounded really upbeat and was breathing much easier even after a big day. She and Aunt Nancy went to the produce stand for fresh fruits/vegetables, Costco, and QFC. Mom stayed in the car while Aunt Nancy shopped, but still this is big progress over the past week or so. Fingers crossed we are finally on the upswing!

Aunt Nancy has arrived

My sweet Aunt Nancy flew in today and has taken over as Care-Giver-in-Chief. It is wonderful to have her here!

Mom's friend Sallie has been the most incredible friend and care giver the past couple weeks. She has basically put her life on hold to be with Mom, attending doctor appointments and providing amazing bed-and-breakfast services. Sallie is an amazing woman and we are so thankful she has been so gracious with her time.

Okay, time for the diagnostic report out. Mom had her CT angio (or whatever it was called...I'm starting to lose track), which showed she does not have pulmonary embolism. That is good news, but still leaves us a little perplexed about the shortness of breath. Basically all the tests say everything is normal. Mom will talk to the oncologist tomorrow and she may have some additional ideas/insights. I will post more as we find out, but I'm secretly hoping that Aunt Nancy's arrival will be therapuetic and Mom will start to recover just knowing that she's here.

Still having a rough time

Mom is still having a rough time and had more tests and doctor visits today. In order to summarize the latest happenings I'll borrow a technique Mom told me about called SOAP. That is doctor-speak for "Subjective Objective, Assessment, Plan".

Subjective - Mom continues to feel really lousy.
Objective - Mom is short of breath even with the slightest activity. She has lost a lot of weight in spite of her appetite kicking up in recent days. Tests today show little accumulation of fluid in the pleural space (that's good) and tests show no problem with the heart (also good).
Assessment - We have no clue what is wrong, therefore more tests are needed. Tomorrow she will have a CT pulmonary angiography to determine if she has pulmonary embolism. I think they are also running a lab test called D-dimer, which helps diagnose thrombosis.
Plan - more tests, starting with the CT pulmonary angio to see if we can get more information.

Aside from medical plans, my Aunt Nancy is heading out to Seattle and will be here tomorrow night. Let's hope we can get Mom stable and back on her feet soon!

Treatment started, but pleural effusion still an issue

Mom has started treatment as mentioned earlier - she's taking a drug called Femara, which is considered hormone therapy (as opposed to chemotherapy). She really is doing better, but that's not to say she's 100% by any means. She was feeling really short of breath a few days ago and decided to call the doctor on Friday morning, who ordered a chest x-ray and another thoracentecis if the x-ray indicated it was needed. Sure enough, the x-ray showed the lung was full of fluid again, so off she went to radiology department for another 'tap'. This time seemed much easier than the previous two taps and when I picked her up at the hospital Friday evening she was feeling pretty well. If she ends up needing the lung taps on a regular basis, the doctor will likely do some sort of chemo directly into the lung area to help nip it in the bud. I don't exactly understand how this works, but if it becomes necessary I'll do a little digging on Dr. Internet and figure out what is involved.

In the meantime, Mom really is doing much better. I can see a noticable change in her disposition the last couple days. Her house is really cheerful right now thanks to an assortment of beautiful flower arrangements from friends and loads of cards. I brought her groceries and am happy to report that she is eating well.

Thanks again for everyone who is sending thoughts and prayers our way. It helps so much. I am trying to play around with the settings on this blog so folks can comment without needing to sign up. Give me a little time to figure it out, but I'm pretty sure there is a way to create a "guest book" without folks needing to create a silly account on Google or whatever. Stay tuned.

Meeting with the oncologist

Mom met with Dr. Johnston, the medical oncologist, today and the news was relatively encouraging (if there is such a thing as encouraging news with stage 4 breast cancer). On the downside, she has some nodes and nodules in the chest area and aorta, but on the bright side there was no sign of bone or liver mets. The doctor started her on hormone therapy called Femara. The side effects are supposed to be fairly mild (certainly nothing like chemo).

She still feels really lousy, but hopefully now that we have a treatment plan she will start feeling better. I'll keep posting as we get more information and I'll try to snap a picture of Mom tomorrow if she agrees. Blogs are much more fun to read with pictures. :-) Thanks to everyone for their prayers and thoughts.

One step up, two steps back...

Mom is not feeling well this weekend. She hasn't been able to eat or drink much and generally feels lousy. I stayed the night with her last night and she was feeling better this morning, but as the day wore on she crumbled. Friend Sally stopped by late morning and I dropped in later in the day (by the way, I say "Friend Sally" to distinguish that I'm not talking about Mom, who is also Sally...hope that isn't confusing). I will spend tonight with her as well and hopefully tomorrow will be a little better than today as she gets more of the yucky contrast material from the PET/CT scan out of her system. The good news is Mom didn't have a lot of pain today and has not needed pain pills, which seems like progress even though she is still miserable. More updates tomorrow, but that is the status report for today.

PET/CT day

Mom had her PET/CT scan today, which is a super-high-tech scan that will give us loads of information. The scan is amazing, but quite involved. Mom made it through the day, but all the events have taken a toll and she was in a lot of pain tonight. She is spending another night with good friend Sally since she wasn't quite ready to be at home alone. As I mentioned to Mom tonight, hopefully this is the "low point" and things will get better from here. Even if the scan shows extensive cancer, at least we will know what we are dealing with and can formulate a treatment plan. Also, once we see what the cancer involvement is, we can figure out if there is any therapy that will help with her pain. I will post more this weekend as Mom recovers from the all the tests this week.

Thoracentecis

Today Mom had a procedure to remove the fluid from her left lung. It went fine and they removed a quart and a half of fluid. It was a big day and thankfully her friend Sally was able to take her home after and is keeping her overnight. I chatted with Mom on the phone and she has a headache (from no coffee) and some lung pain, which I assume is expected given how her lung is getting back to normal now that the fluid is drained.

Tomorrow is her PET/CT scan, which we expect will give a lot of information. She has to eat a restricted diet tonight of low carb/high protein. Sally is making her a ham/cheese omelette, which sounds pretty yummy.

We expect to get a lot of diagnostic data from the scan tomorrow and Mom has a follow up visit on Monday to talk over the results with Dr. Johnston, her oncologist. I think the next couple weeks are going to be pretty overwhelming, but we need to get the data so we can formulate the best treatment plan. We also have a second opinion a week from today with Dr. Rinn, who is my oncologist (and walks on water in my opinion).

I will post more tomorrow after the PET/CT and again on Monday after her meeting with the oncologist. Unfortunately I won't be able to join her on Monday because I'll be dealing with my own issues. I am scheduled for surgery of my own on Monday afternoon (nothing to worry about, just a "correction" for me). But, I anticipate getting the full report from Mom and Sally, who has volunteered again to tag along.

Background and first update

Mom has given me permission to be her communication manager as she navigates the health care system to get a diagnostic workup and a plan. I decided it might be good to start a blog to keep everyone in the loop. Don't worry, the information is private and not searchable on Google, etc. I just figured this would be a convenient way to update everyone rather than sending email.

I'll cut to the chase first and give the good news/bad news summary. The bad news is Mom has metastatic breast cancer, the good news is she has treatment options that will keep her around for many years to come.

With the headlines out of the way, I'll give more detail starting with a chronology of events and a summary of where we are now as best I can report.

Mom has been having various medical issues for a number of months now. After many visits to various specialists, she finally ended up at her primary care doctor on May 29th after experiencing acute shortness of breath. They did a chest x-ray and diagnosed her with pleural effusion, fluid in the lung. Thank goodness her good friend, Sally, was there to take her to the doctor that day and be with her when she got the news. One of the likely causes of pleural effusion is metastatic breast cancer. Since Mom is an MD, she is obviously quite aware of this and the news was shocking.

The primary care clinic also took a biopsy of a small skin lesion on her left side and made arrangements for a diagnostic thoracentesis. On June 4th, the clinic called and gave a really spooky update. The skin biopsy came back as cancer. More specifically, "undifferentiated carcinoma with estrogen receptors". The reality was really staring us in the face at that point. Mom has metastatic, stage 4 breast cancer.

It has been quite a whirlwind to figure out what to do next. We were able to get an appointment with a highly recommended oncologist, Eileen Johnston, who happens to practice within walking distance from Mom's house (scroll down on the link to see her picture and biography). We met with her today and she is wonderful! Finally we have a coach who is calling the shots and helping us make sense of the data. Mom's friend Sally was kind enough to drive mom over and stay with us the entire time. She is a wonderful friend who has been incredibly supportive the past number of months as Mom has been going for various doctor's appointments, tests, and even surgery. Plus, Sally is an Episcopal priest, so it never hurts to have extra good pray-ers on our side. :-)

After meeting with Dr Johnston, we figured out the next steps are to drain off the remaining fluid on the lung (Wed morning) then have a PET/CT scan on Thursday. The PET/CT will give a lot more information and will help guide the treatment choices.

After we get all the diagnostic data, the next steps will be treatment. Dr. Johnston said the most likely course of treatment will be hormone therapy, not chemo. This is great news since the hormone therapies have far fewer side effects than chemo. Plus, it would leave options for chemo open for later on if the hormone therapy stops working at some point.

I know this has been a lot of information, but hopefully explains some of the "where-we-are" and "where-we-are-headed" questions. We have many reasons to be thankful.