Sunday, October 26, 2008

Dear diary...

Sunday afternoon. Rebecca is getting stronger as she gets over the pneumonia. I'm hoping that with the pneumonia gone and her apatite returning that life will regain some semblance of normality, at least for a while. A lot hinges on what treatment happens and how it makes her feel. It doesn't seem that the cancer itself is symptomatic at this point. Her breathing and swallowing are pain free... I was afraid that they wouldn't be.

We are talking with the kids and trying to give them the support they need and the space to be sad, angry and indifferent. They seem to be doing OK given the circumstance.

I'm off on a week long business trip. Emily, our house mate, will be helping Rebecca for the week with the running around as well as some awesome carpool community. Feel free to call Rebecca on the home phone she will answer or not based on her ability to do so. Home phone is better than cell as we are both racking unreasonable amounts of cell minutes.

Love you all...

Thursday, October 23, 2008

Thanks to you all

WARNING: This is a raw dump of Andy brain after having a couple of beers ( I don't drink and I don't like beer). I guess that like Josh Kornbuth I am now publishing my therapy sessions for all to see... Continue at your own risk.... There is absolutely nothing to be learned in here about Rebecca's health.

The outpouring of love and affection that we are experiencing is amazing. We are truly blessed by our community near and far. Some of you we have known for years and some of you we haven't even met yet... It's pretty amazing. 

I have conflicting feelings and rather than try to resolve them and present you with a solution, I will just tell you what the two sides are so that as I send out mixed confusing messages you can understand that I really am just crazy.

On the one hand I am totally overwhelmed. I just started a new job. Rebecca needs physical care and has now been out of commission for 5+ weeks. The kids need love and support  and my emotions are battered and bruised. 

On the other hand I want as much normalcy as possible and I'm terrible at accepting help. I don't WANT to be needy. I don't want to have to call people I have just met and ask them to look after my kids because I can't look after them myself.  I don't want to be the focus of pity; which is silly really because part of me knows that pity is compassion, I know that what is being offered is unconditional love. That is pretty amazing. I guess the problem is that I don't want to NEED the special treatment... How can I at the same time feel so loved and supported and so totally devastated? There are SO many people offering help, if I don't feel OK I must be really ungrateful. Lots of people have bad shit happen, we aren't that special, isn't it my job to look after my family, if I fall short I must be a failure. 

All of this is in me so please just be patient with me. 

I know that this jolt of reality changes everyones priorities, at least for a while.  I know that over the next few weeks people who we have been too busy to see for months on end will suddenly have time to hang, and we'll have time to hang with them. There are people in our new communities at BPC and BMS (the kids schools) who we would have met and bonded with, slowly, over the next couple of years who have suddenly had us thrust into their consciousness in a most unusual way. 

Somehow in all of this I just want my life back. 

We are being so looked after and people are being so amazingly giving but my heart feels like it's being ripped out of my chest. I want to hang out and chat about the elections and the economy but all I can think about is 'what next'.  

Wednesday, October 22, 2008

There's no place like home

Just click your heels together 3 times and say "I feel nauseous stop driving like a lunatic!"... Just kidding she was actually feeling fairly stable by the time we drove home.


We got back the results of the needle aspiration, they confirmed cancer, no infection. It sucks that there's no infection as we can't blame any of the size of the lumps on anything but the cancer.

The final TB (loogie) test came back negative... She doesn't have TB.

Today she had the needle biopsy and her port installed. It went as well as these things can go.

So the situation as we currently understand it is this:

Rebecca's cancer has spread significantly through various parts of her chest and up into her neck. The cancer in the lungs created little pockets for bacteria to breed and that's why she got pneumonia. She is on antibiotics to deal with the pneumonia.

Based on the results of todays biopsy we will know if the tumor is still hormone receptor positive. This knowledge will let us know if she can still try alternate hormone therapies or if it is straight on to chemo. The project for the next week or so is working out her treatment plan.... I'll let you know what are choices and decisions are as we go.

As well as whatever the oncologist recommends we will continue to pursue other options from other healing traditions.

Tuesday, October 21, 2008

TB or not TB

Rebecca SHOULD be coming home tomorrow after a needle biopsy and the installation of her port. If you don't know how lucky Rebecca is to have a port you should watch or listen to "God Said, Ha!" by Julia Sweeney.

I'll let you know what the results are once we hear

Monday, October 20, 2008

Another day older

It was a long and uneventful day. I didn't work today, I spent the morning with Rebecca at the hospital and then went home to sleep for a while before picking up the kids from religious school. I ate with the kids then went back to Kaiser to be with Rebecca for a 'procedure'. Then I came home and snaked the main drain so that we can run the dish washer and shower in the morning. At least I know I can always get a job at roto-rooter.

In order to determine that Rebecca does NOT have TB to the satisfaction of CDC guidelines she has to have three consecutive negative sputum tests. To fail these tests, each morning she has to 'hock a loogie' into a cup. For those of you unfamiliar with this technical term it is the art of getting as much 'gunk' as possible into a glob before spitting into said cup. If she fails to get enough 'stuff' into her loogie they make her breath in an irritant to promote the upward movement of the 'gunk'. The irritant seems to work, judging by how irritated Rebecca gets.

Once she has hocked they send the loogie to the lab where it is examined for signs of the TB bacteria. It takes about 24 hours to get the results back from the lab. SO.... If she fails the first, Sunday morning, loogie test and the consecutive Monday and Tuesday tests she COULD be released on Wednesday morning upon receipt of the negative result. This theory is all great except that we still haven't heard what the results of the first test were. However if the TB test come back negative then we are back trying to work out what IS wrong.

The radiologists report says that there are 'lesions' present in the mediastynum, the pleura, the lungs and nodes on both sides of the neck (and I think a couple of other places too but I forget what they were called). The oncologist says that these might be cancer or they might be due to an infection, you just can't tell. The fact that Rebecca has been running a fever is an indicator towards her having an infection. Just an infection? or cancer and an infection?

The most accessible manifestation of her ill-being is the massive lump above her left clavicle so that is the first place to dig, literally. Tonight she had a needle aspiration of the super-clavicular node. If they find cancer then it means that node has cancer, if they don't find cancer it means there may be cancer there and they missed it with the needle. So next step would be a 'core biopsy', a larger needle that they insert under some radiological imaging device so that they are sure to miss all the vains and nerves that run through the neck. They don't want to do a surgical biopsy because of all the vital stuff that runs up the neck. I asked why they don't just cut of her head and shake to see what falls out; Rebecca laughed, the doctor scowled.

SO... The news that we could get tomorrow is either a positive result of cancer in the super-clavicular node, which wouldn't be good OR a negative result that would send us on to the next test. The other news we could get would be a positive result on the TB (loogie) test, which wouldn't be bad, OR a negative on that would send us to the next test.

One other data point before I go to bed... Rebecca had the BCG vaccine a couple of months ago. She is convinced that the problem is a bad reaction to that vaccine. In her research she found a set of symptoms that match all of her condition fairly closely. Pneumonia, nodes in the neck, low grade blood infection (I don't think I mentioned that they think she might also have a low grade blood infection)... The doctors have all discounted her wikipedia diagnosis, I am going on record saying that I wouldn't be at all surprised if she turned out to be right.

If you want to reach out to Rebecca call her cell phone. If she's not up for talking she will not answer. If you want to visit talk to her about it on the phone and schedule your time.

You know how to reach me.

lots of love,

good night

Sunday, October 19, 2008

Lets hope Rebecca has Pneumonia!

So it has been quite a weekend... This is my last task before I fall into bed and get some sleep.

As you may know Rebecca has been 'under the weather' for quite a while. She first came down with 'flue-like symptoms' about a month ago. At first we all assumed that she had flue, it fit the symptoms and there was a fair amount of it going around. However, while everyone else around us got better; Rebecca didn't. A couple of times Rebecca thought she was on the mend only to be knocked back into bed with a fever again. Saturday she finally got sick of the cycle and had me take her to the hospital.

Rebecca, her primary physician and her oncologist had already decided that she should have a CT scan soon so we were pretty clear as we drove to the ER that we were going to get them to send her for a CT to see what was going on in Rebecca's lungs. We dropped the kids off with Sindry and Owen and headed to Kaiser Oakland ER.

We arrived at the ER on Saturday evening at around 6pm. By 6:30 we were in a nice private room. They got us triaged and booked in so fast that the registration person came and processed our registration in our private room... They were awesome... another BIG thanks to Kaiser for being great when we needed them to be!!

They warned us that the Kaiser Richmond CT scanner was down so there was a long wait in Oakland but readily agreed to the scan once they understood the situation and the history. We settled in, they even brought me a gurney to lay on next to Rebecca. At about 3am they came and took Rebecca for her CT.

Not long later she returned with the doctor; this is my tired brains' best attempt at recalling what they said:

They could see significant 'stuff' on Rebecca's right lung, but it wasn't clear what it was. Due to the cyclic nature of Rebecca's symptoms over the preceding month TB became a real possibility and the ER put us into 'lock-down'. In fact all they did was move us to a different room that has special filtration and started to wear masks around Rebecca but it seemed much more dramatic.

Apparently it's not uncommon for people with cancer to get TB; who knew?

As Sunday progressed, while I was off with the kids, the option that this is ALSO pneumonia has also been introduced. It seems that this is apparently a combination of things going on not just one. So... It takes a little while to get a positive diagnosis of TB so for now they are giving Rebecca intravenous antibiotics that SHOULD deal with any pneumonia that is present. Next they will start TB treatment either because they get a positive diagnosis or they will often start it prophylacticly just to be sure. Apparently it can take weeks to grow a TB culture. You can get a quick positive diagnosis by finding TB germs in spit under the microscope but proving a negative diagnosis once TB is suspected can take weeks. If the 'stuff' on her lung is neither TB nor pneumonia then by a process of elimination then it will be more metastatic cancer.

Another 'clue' is the swollen lymph nodes that are visible on the CT in her neck. Lymph nodes can get enlarged due to infection or cancer.... By biopsying the nodes (a needle biopsy is a pretty non-invasive procedure) they may be able to shortcut some of this guess work. I'm not quite sure how this works yet but I guess that if the biopsy the nodes and there's no cancer that has to be a good thing.

SO.... we already knew that Rebecca had a small amount of metastatic cancer on her right lung (that was the diagnosis from 2 years ago) it is possible that hasn't changed or progressed significantly. Best case... she has pneumonia and that's it... but when I have suggested that it has been hinted that is unlikely but I don't get why... maybe they just don't want to get hopes up. It may be something to do with the CT, apparently pneumonia looks quite different from TB and cancer but TB and cancer can look quite similar.

TB, if that's what it is, is treated with 12 months of some anti-biotic cocktail. I haven't heard yet if this is an anti-biotic that has many of the side-effects that Rebecca is very sensitive to.

Tomorrow her regular oncologist will be back at work and maybe I'll get more info from him.

For now, lets all just hope that Rebbecca has a nasty pneumonia and that a week of IV intravenous antibiotic will have her home and healthy!!

Watch this space for updates, facts and jokes.... Your current assignment is to complete this joke:

3 diseases; pneumonia, TB and cancer walk into a bar.... (should it be an oxygen bar? )

Love to you all

PLEASE call me or email me or leave comments here, I'd love to hear from you.

I will ask Rebecca tomorrow how available she is for visits or phone calls.