Doctor sketches

Here are the before and after sketches that Dr. Park made of mom's lung and trachea after the surgery, to show Sarah. To just quickly summarize (hopefully correctly from my phone conversation with Sarah), they are "giving up" on the top right lobe, but they hope that the removal of the part of the tumor that was blocking airflow into the lower right lobe, plus the stent, will improve her breathing by a lot. Sarah reports that mom's "rattle" is gone today, so that's great news.

Thanks to all for your offers of help and loving wishes. I'm happy to report that we found a place to stay in Manhattan (thanks, Amanda!) for a couple of weeks, so we'll be heading out again the second week of March. Yay.

She came out of recovery succesfully

I realized that I didn't give the update on Mom coming out of recovery and actually getting out of the hospital today.  So they kept her a pretty long time - they weren't pleased with her oxygen levels in the early part of recovery so we had to wait until the stent worked its magic and her oxygen levels rose.  But we left around 7:30 and frankly I was glad they were so totally thorough, making sure she was really okay before we left.  We were both wiped out but I think all told it was a successful day. They were able to give her pain meds intravenously today so the neck pain was kept at bay a bit.  Her dear friend Katrin was here for almost a week, really taking care of her and a lot of details and we are so grateful for that.  It's great to have such good friends around, lovin on her (us).  She was more wiped out than in pain when I left her tonight, and there wasn't any blood or mucous coming up, so that's good stuff. One day at a time, yeah?

Out of surgery - tumor hacked away at - stent in place

So I'm at Sloan right now and Mom's still in recovery. I will see her in about 20-30 minutes and we will be home in 2-3 hours. After recovery they want to do an x-ray to make sure that everything's where it should be before they send her home.

I spoke to Dr. Park, the doctor who performed the bronchoscopy, and he said that Mom did very well in surgery and that they were able to remove part of the tumor blocking the upper lobe of her right lung (don't I sound so medically knowledgeable?). He also found some specks on her trachea that he said would probably have developed into cancer so he lasered those suckers and they are OUTTA THERE.

He decided to insert a stent just outside the upper right lobe in order to prevent the cancer from expanding into the lower right lung or elsewhere (something which would result once again in labored breathing). I asked him about the possibility of stent migration and he said the chances are very slim because the airways just below where the stent resides are smaller than the stent itself, and stents tend to migrate downstream, so we should be good.

He said she may cough up some mucous and blood today, but said that's totally normal. She should be fine for radiation tomorrow morning.

The neck pain has been pretty excruciating today and I'm a little worried because she hasn't eaten since midnight (surgeon's orders) and hasn't taken pain medication since about 11am, so basically she will come out of recovery hungry and in pain - not fun! But hopefully we can take care of both issues right away. The radiation hasn't exactly kicked in yet, but the nurses I've talked to say that it usually takes a few treatments, so I'm hopeful that she will be in way way less pain by the weekend.

roto rooter

Tomorrow will be the procedure on her trachea. There is a tumor there that is growing rapidly and making it very difficult for air to get into the left (I think) lobe of her lung, so they're going to cut part of it out tomorrow. The formal term for the procedure is "rigid bronchoscopy". Originally, they were planning to put a stint in, but apparently there is a danger of those migrating, and since it expands after insertion, a migrating, expanding stint in the throat seems, well, less than ideal. So, partial tumor removal only, and hopefully after that we'll see a big improvement in her ability to...breathe!

Second radiation went well today, but the pain is a lot worse.

First round of radiation done!

So Mom had her first radiation appointment this morning at 10am. She gets to bring in a CD of her choosing during each of these appointments, so that's kinda cool. She'll be there every Monday thru Friday this week and next, around that time, for a total of 10 radiation treatments. After that, we'll begin chemo. Also, this Wednesday she will have the stint inserted in her throat (or around there...), and later this afternoon she's meeting the surgeon, Dr. Park, who will perform that procedure. This Friday is a follow-up visit with Dr. Piatanza. Clancy comes Monday!

Radiation delayed until Monday

Okay so I'm working through my anger/frustration right now but, argh, because of some administrative glitch (they couldn't get in touch with the doctor to approve the films) they weren't able to do radiation today and have postponed until Monday at 10am.  Mom has reacted in a much more zen, calm manner than me, so I guess that's good.  More soon. 

Tattoos, needles, scalpels and radiation

Hi.

Mom's getting her first dose of radiation today, in about 20 minutes (at 3pm EST). At her planning appointment yesterday she got some small dots tattooed on her neck and shoulders, so that they can direct the radiation to the exact right spot and minimize damage to other tissue. For those who were horrified by this image, you'll be glad to hear that she doesn't have to wear a face mask--just a little chin strap.

Today's other big news is that they have decided to put a stint into her lung next Wednesday, to make her breathing easier. This is great news, as we were thinking that they would treat that with more radiation or just wait for the chemo to do its thing. Hooray for mechanical solutions. So the two things that are bothering her the most--her neck pain and her labored breathing--are being treated first.

She also has a new blood thinning medication (to treat the blood clot in her leg), that she must inject daily. Whee.

We are making plans to get out to New York again sometime soon. Anyone want to do a New York-San Francisco apartment trade?

Bone scan done - prep today - radiation tomorrow

So yesterday Mom had a bone scan at Sloan, which was yet another test to more carefully specify where they need to target radiation in her neck (these people are seriously THOROUGH!).  She also had a CT scan last Saturday to do this.  Hopefully all tests are done now - at least for the immediate future.  

They injected her with some radioactive isotrope thing yesterday at 1 and then at 5 they did the actual bone scan.  Today she will go back to Sloan for a preparatory appointment for the radiation that starts tomorrow.  They'll run a simulation with her, so she really knows what to expect.  You can check out the simulation program here.  The radiation appointments (as Jenn said, 10 in a row on business days) will occur at the same time every day, with the same technician.  So that's cool.  Even adults need consistency.

Katrin comes to town tomorrow to stay with Mom for I think 6 or 7 days, and then Clancy will be here March 3rd, so yayyyy!  I have a concert at my church job Sunday afternoon that Mom's gonna try to make, but regardless, we will still have our annual Oscar Night celebration. 

quick update

Janet's last day of work was today, so now she can focus her attention on her new full-time job.

This week, that will be: a bone scan on Wednesday, a planning session with the radiology oncologist (there's probably another "ogical" in there somewhere, forgive me) on Thursday, and her first radiation session on Friday. She'll continue to have radiation for 10 (business) days in a row, and then will commence chemotherapy, once every three weeks.

More soon!

Sloan Kettering = Rolls Royce of cancer care

We are, for the first time in a long time, hopeful and excited.

Even walking in the building this morning, it was apparent that this place ROCKED. Everyone we encountered at Sloan Kettering was caring and sweet, looked us in the eye and didn't for a second assume they knew anything about Mom's situation before really hearing about it.

So after checking her in and taking her vitals, they brought us back to the examining room (which had its own private bathroom and a nice round table with four chairs). Several minutes later we met Mom's doctor, Maria Pietanza. WE LOVE HER. She asked Mom about 300 questions, including asking for the whole history of her pain, where it hurts, when it hurts, etc. etc. She examined Mom, said she wanted to take a look at the films again, and then would come back so we could discuss treatment.

When she came back she said, "So the first thing we need to do is get rid of your neck pain."

YAY!

She told us that radiation is the best way to do that, so we made the first available appointment with Dr. Alice Ho, the radiation oncologist (that appt turned out to be Monday morning at 10am). Mom is also getting a CT scan tomorrow which will allow them to target the exact spot in the neck needing radiation - woo!

Pietanza told us that chemotherapy controls the disease, stops new metastases, shrinks tumors and prolongs survival. We like all of these things. Systemic treatment is needed and she wants to start with a combination of carbo-platinum, taxol, and avastin. She will also have supportive medication to bypass some of the side effects (and we will be seeking out fabulous scarves).

The radiation will go on for ten days at a time (once a day), after which we will begin chemo. So chemo should start in about two weeks. When it starts, the chemo will occur once every three weeks and normally goes for six cycles. After two cycles of chemo they will do a test to see if the "cocktail" is the right one for Mom.

This doc chucked her former pain meds, and now she's on:

• oxycodone for pain
  
• steroids to take down the swelling in the neck/kill the wheezing
  
• antibiotics to counteract the chemo's pending effects on the immune system (good cells and bad cells all go out together)
  
• anti-nausea pills
  
• cough-suppressant (major)
  
• and ya know...laxatives

After the doctor left, a nurse came in and talked to us, explained in detail which meds to take when, and said sternly "Nobody should be sitting at home in pain, so if you're in pain, tell us."

YEAH!

Today her head actually bopped to the music as we sat eating in PJ Clarke's, and tonight she has been sitting up, having impassioned conversations. SUPER CHATTY! The neck pain is markedly better and the wheezing has almost gone away altogether.

Really ready for Sloan

So I talked to the Mama today (okay yeah - I've called her 4 times since she left work at 11:30) and she now has a wheeze - new this week. It's like I can hear the cancer. She feels worse every day, and that part just kills me. I would do anything to take away her suffering.

I guess we're all enduring the worst part right now, which is the waiting. Side effects from treatment would be welcomed at this point. Pain from the disease itself is a whole other animal.

Mom's good friend (and mine) Carla Nemec is coming to NY today, staying here for about a week, then two days later her friend Katrin will be here, then soon after that, Clancy. So yay for all that!

Carla will go with us tomorrow to Sloan, so there'll be 3 sets of ears listening to that oncologist. I'm actually thinking of recording it. Am I nuts? Probably.

Thanks everyone for the overwhelming love and support. Til soon.

You want the good news, or the bad news?

Well, hi. We've decided to start this thing up so that folks can stay updated on the state of the mama. And the actor, and the poet, and the dreamy dreamer, and the person-so-full-of-life-that-we-can't-fucking-believe-this-is-happening. Ahem.

The official latest: She has had a chest x-ray, 2 CT scans, a bronchoscopy, a PET scan, and an MRI of her brain. She has seen one oncologist and is scheduled to see another at Memorial Sloan-Kettering, arguably the best cancer clinic on earth, this coming Friday, February 15. She's already been notified of the results of the last two scans, though.

The good: there is no cancer in her brain. Hooray!

The bad: it's in her skeletal and lymph systems, her liver, and both lungs. It's stage IV lung cancer, non-small cell, "incurable," a terrible word, but all it means is that it isn't likely she'll ever be cancer-free. Treatment aims to prolong life and preserve quality of life, as much as possible. We're for that.

The so-so: It's in her cervical spine, which is kind of good news because it gives a concrete reason for the horrifying pain she's been in, and hope for alleviation of said pain with radiation. Radiation is also a possibility for her bronchial whatnot, as she can breathe out of, but not into, her left lung. Chemotherapy will also likely be recommended. The disease is too spread out to have surgery make any sense.

And...this is all from the first diagnosis. She'll have a second diagnosis on Friday and, we're hoping, treatment soon, soon after that.

Send prayers, visualizations, silly postcards, and love. We'll keep you updated here.