Katrina's Thoughts and Updates

Sad news

Hi all,

I am writing to let you know that my mom, Katrina Scott-George, died yesterday afternoon after a nearly 7-year fight with breast cancer. I am glad to say that she was at home and surrounded by people who loved her. After weeks of discomfort she finally seemed to have found some peace in the last few days, and the end was quick and came in her sleep. She did become deeply tired near the end but she never stopped being her powerful self. We are mourning her loss and feel sad for the hard struggle she had to go through, but are also fiercely proud of her amazing fight, her strength and her courage, and are grateful that she was able to have the passing that she always said she wanted.

As our family works to respond to this huge loss, we find ourselves needing a bit of quieter time, so we are hoping that you might hold off on visiting for the moment. We are planning a memorial where we can share our remembrances collectively, and this will likely be held on Memorial Day weekend (May 26-28) -- after my brother, Kaz, has officially graduated from Harvard. As many of you know, that was a major goal of hers, so we want to make sure we see it through before moving on to this next stage. We will be in touch in the next few days to communicate more details about the event.

In the meantime, if any of you would like to make a donation in her name, we suggest a couple of charities that our family benefited from greatly and which I know she would have loved to see supported:
- bcmets.org - an online community for women living with breast cancer that provided my mom with both support and critical medical information as she worked to advocate for her own care - http://bcmets.org/donate, and
- Oaktown Jazz - a community jazz education group that was important in helping Kaz find his love of music - http://www.oaktownjazz.org/.

Thank you for being a part of her support network -- for growing up with her, raising kids alongside her, working for change with her, laughing with her, pushing her, listening to her, learning from her, and otherwise loving and caring for her both physically and emotionally. In the last 24 hours, we have already received many notes from those of you whose lives my mom touched in some important way, and it has helped to give us an even deeper sense of the enormous size of her footprint on this world. We look forward to getting to hear and share more of these amazing stories over the next few weeks.

With much love and appreciation,
Kuelli (and Wally and Kaz)

 

Health update from the hospital

The President of the US is Barack Obama. The date is April 4, 2011. I am in San Francisco. (my daily assessment questions - did I pass?)

Dear Friends and Family,

I am just writing to let you know that I am not doing well.  I have been in and out of hospital since Feb 13th , hoping that  I could change my condition.  Things are still up and down, however as time passes the possibility of a good outcome is disappearing.  I have  been recommended for hospice but my doctors acknowledge that while they feel that they have done all they can,  I have not had the opportunity to have everything tried that I feel might be helpful.  An incredibly large number of specialists have agreed to devote themselves to supporting me in a final effort to improve my condition.  That is what we are working on at the moment.  If things don’t go well over the next week or two, it is likely that I will try a surgical procedure that may get me another 6 months or so of a decent quality of life (best case scenario).  I have been wanting to write everyday but have been overwhelmed by the pace of change and deeply engaged in the battle immediately in front of me.  But I really wanted you to have this information given the seriousness of my situation.  We have little capacity to respond to any emails or take phone calls but hopefully one of us can pick up the blog from this point and have updates going forward.  If you want to send an email I can probably read it but will not be able to respond.
 
I have  had a huge amount of support.  Kuelli, Haley and Kaz all came home from the east coast and have been really dedicated to my care.  Wally has been there every day filling many roles.  Kevin has visited and stayed in daily contact.  Kim came and spent a couple of weeks and other friends have visited providing incredible support.  I got to see the latest K, Kailani Belle, although only for a day because It was not safe for her to be in the hospital.  During that period I also got to see Kerida, Kimani and Khaile; Kamila and Kelissa; and Kyra and Kyla – 13 out of 15 Ks!
 
Love from Katrina;
Dictation from support team

Back from Jamaica

Hi all,

I was on the beach in Jamaica on Wednesday and landed in the chemo chair on Friday. The important part of that sentence is that I was on the beach on Wednesday. What a great time I had - felt great, ate great, slept great, had great fun and great family time. Sadly, I didn't get to see any friends and not much extended family but I guess there will have to be a next time. Big Silver Sands party in June??

I did not experience any symptoms from radiation that were predicted. None of the terrible brain squashing events seem to have taken place, and to be honest I am feeling really good although very out of shape. Treating my "asthma" really helped with my breathing which I think has contributed greatly to my well-being. My resting heart rate is normal again and so I don't tire as easily with simple activity.

I'm pretty darn happy. And I get to see family again in less than a month. I'm also finding it harder and harder to stay in a state of readiness for my always impending demise. This last diagnosis of leptomeningeal metastases (google it) was a worse case scenario for me, and then the tumor against my spinal cord threatening paralysis was just insult to injury. But then as usual, NOTHING BAD HAPPENS! Why not???? I can't explain. But it makes it really hard to be prepared for the bad thing. Which is what the medical field terms, denial. I have studiously avoided being in denial. But now at what should be the end of this journey I find myself slipping into denial.

When first diagnosed I had a hard time buying a pair of shoes thinking I wouldn't need them. Now I'm starting to think further into the future. I guess the cost of denial is disappointment. I'm just gonna have to deal with that it seems...

A quick update

just to let you know that radiation is going fine. I have a lovely hard plastic mask that was molded over my face that keeps my head locked down for the brain radiation, and I have to lie still with my arms above my head for my spine radiation, but it is all done very efficiently and I haven't been having any noticeable problems.

I had another draining of my belly on Monday and they removed 2.4 litres of fluid, which helps me feel a bit more comfortable, plus now I won't be bigger than Kamila.

Finally, I saw my GP today and got a diagnosis of Asthma to  add to my list, so now I have an inhaler-thingy as well. If it helps my coughing and breathing I'll be pretty happy.

Fingers and toes crossed that everything stays in one piece for Tuesday's flight. i have to do radiation on Monday because last Friday was a holiday and we need to get the final treatment in, so I'll be going up to the wire. Will I have to go through a scanner at the airport as well?

Oh, and when I saw my neuroradiologist today she said she wasn't even going to schedule follow-up. She will leave that to one of my oncologists, and doesn't think I'll need to be seen for another three months. So I guess that means no dying is planned for me before I turn 48. Maybe I will get to see Kaz graduate from college! Maybe we can do one more big holiday at Silver Sand?! So many possibilities!!

Tired but happy today.

 

 

more terrible possibilities?

So I had my big tests on Wednesday that were supposed to be focused on my leptomeningeal metastases. This time in addition to the brain MRI we did a spine MRI to see if the cancer had spread via my cerebrospinal fluid to some location in my spine. Well of course, looking into my body is a dangerous proposition. The spine MRI found a tumor that was not LM spread, but rather bone spread. A big tumor is growing in and around my T-10 verterbra (in the middle of my back), and most importantly it has grown against my spinal cord. Apparently this means I am an imminent risk of paralysis from my t-10 down. The threat of the LM suddenly became secondary. I immediately went into radiation planning, and we will be zapping the tumor in daily treatments for the next two weeks. I have tickets to go to Jamaica on the 22nd and the radiation will end on the 18th. Apparently it is supposed to make you very, very, very tired at the least. Not what I was planning for my family holiday, but I guess it beats paralysis.

On the good side, my LM disease which was supposed to have killed me by now, is growing much more slowly than expected. No good reason for that, except that apparently the blood thinner I am on because of my portal vein clot can be a significant cancer retardant. This would fit in the category of God works in mysterious ways.

The other goodish news is that the tumor marker that measures a cancer-related protein in my blood is lower than it was which suggests that the chemo that I'm on is reducing the cancer. This is only goodish news because if the chemo is working so well I shouldn't have a big old tumor pressing on my spinal cord.

The wacky thing continues to be that all these terrible things are going on inside of me, but I am apparently oblivious as I don't experience too many problems. My bone gets chewed in half, and no pain??? How lucky am I. I do experience the not fun part of always going to the hospital. These treatments are an hour away from home or more with traffic. It feels a bit like a full-time job....

an overdue post

Hi all,

Last time I wrote - about a month ago, I had just had my new port installed. Since then, my saga with infections and antibiotics has continued. First, the incision site for the new port became infected, and then I had a bad case of strep throat, so I have been on continuous high doses of antibiotics. I was actually a bit relieved to be diagnosed with the strep because the fatigue level had gotten really ridicuous. So, I've been sick and under the weather, but I'm all better now and starting to bounce back. I have made it the gym and to yoga 3 or 4 times over the last week which always helps. Each time I go back, my starting point is lower than when I left, so for me it is just a fight to maintain whatever little strength I have. My weight is heading down, but for all my high school friends who knew me when I weighed 115 lbs, I'm still pretty chunky at 145 lbs. I remember spending my first few years of college trying to gain weight and I think I got up to 135 lbs. Anyway, considering that with all the hormonal treatment and surgical menopause my weight ballooned to 200 lbs, it is a relief to be at a normal weight. I am managing to keep the belly reasonably small with constant diuretics and being very careful not to accept ANY IV fluids.

Anyway, the big thing on my mind right now is my leptomeningeal diagnosis. I declined treatment feeling that with symptoms I have was havig in my right eye, it didn't make sense to treat. Now two months have passed and the median prognosis for this disease is 5 - 7 weeks. So something that should have happened hasn't happpened. We had an MRI done at the beginning of July, and then at the beginning of September so we could see the rate of growth of the tumors (rapid), so something is not adding up - in a very good way. Four scenarios are possible:

1. the tumors are growing in very benign locations so not affecting me...

2. the chemo I'm doing is getting to the cancer in my brain and meninges (even thought it is not supposed be be possible becasue of the blood brain barrier.)

3. I have been misdiagnosed.

4. Some other explanation that I don't believe.

At the moment I have created a hypothesis for scenario three, and I have asked my doctors to consider if what they saw in my brain was hemorrhage not tumors. We did laser surgery on a tumor in the area in April and I started on an injectable blood thinner in March, so to me this is conceivable. I also know of another woman whose stroke was disgnosed as LM disease. My doctors have not responded, but I think they are waiting for next weeks MRI results.

So, after that test on Wednesday there should be some pretty interesting conversations, and a good reason to post. Meanwhile I have been working hard on creating a project out of a small part of my family history work. Kuelli's high school friend, Liza, has helped me to narrow down an achievable project, and she is being my editor and publisher.  Thank goodness for that much needed assistance. It feels like a bit of a job, though - not my favorite part of family history work, but it will be satisfying to have a product of any sort.

Love to you all!

Katrina

hospitals, clinics, procedures, nurses

Hi all:

Despite the competing main events of my portal vein thrombosis, leptomeningeal metastases (LM), liver metastases, and portal hypertension, the last few weeks have been consumed by the small peripheral signs of body break down.

After weeks and weeks of daily visist to the clinic for antibiotic infusions and the removal of the infected port on the left side of my chest, and then the insertion of a new port on the right side of my chest, I was ready to start chemo to pretend that we can affect my LM.

I'm stll having to go to the clinic for my daily shots of blood thinner. Although I can do this shots at home in 10 seconds I have to spend 1-2 hours going to the clinic because of insurance, or they will cost me $120/day. This is because I am in the "donut hole" of my prescription plan which is essentially a gap in coverage that occurs when you reach a certain limit. The prescription plan stops paying, but the medical plan will pay if you go to the hospital to get them done - not life affirming!!

And then with all the infusions I've been having my baby Kamau started growing in my belly so I had a tap (needle stuck into my abdomen to drain fluid) on Wednesday, but they didn't get enough so I had to go back today. Unfortunately, our nurses were on strike yesterday and were locked out today, because the strike force of nurses (flown in from around the country) have 5 day minimum contracts, so the regular nurses can't return for five days. So none of these nurses knew each other, the doctors or the hospital procedures or equipment. It made for a very long and chaotic visit. Then the tap went a little haywire because the suction tube sucked onto my bowel and wouldn't let go. Very long wires were inserted, pigtail catheters were used, and it was altogether unpleasant, although my doctor was great! He was the same doc that did my last two procedures over the past 10 days, so we are buddies now.

And then sadly after one dose of chemo my bone marrow was shot, so then I started to need daily bone marrow boosting shots - which did not do the job. And so I could not do chemo yesterday. I'll try again tomorrow. But since that happened after just one dose it is unlikely I'll be able to tolerate more than one or two more doses.

I think my amazing body is making things easy on me. If I can't do chemo, I don't have to decide not to do chemo. If I can't do chemo my liver will start to shut down. If my liver shuts down by brain will not be an issue. Has my body figured this all out? Taken me to the very furthest I can go and then ready to put me down for a soft landing? We'll see I guess. Although I am so sick I am still so incredibly healthy. How lucky is that?? 

Exercise!

Love,

Katrina

How to make crucial life altering medical decisions

 

Click on Arrow to the left

I decided to do no radiation, and just go back to my original chemo to try and manage the cancer in my liver. This chemo is not expected to treat my brain or the CNS. I can always use radiation later to try and palliate symptoms. 

And then, as with the wave of a wand, the wonder team was there

OK. I've done a lot of ranting about my doctors and medical systems on this blog. Then this week, my new doctors, my fired doctors, my retired doctors, all my doctors found their little interlocking pieces and snap, I have the dream team.

My fired doctor gets highest praise I guess, because I really fired her, ranted against her, and left in a cloud of smoke. But that smoke does not seemed to have left a trace of bitterness in eyes, that watered along with mine and Wally's as she talked with us about helping me find a humane way out of any terrible future that might lie ahead. And as tho' on ice she flawlessly pivoted from her position to mine on chemo options. And while she was with me the neuroradiologist called and without waiting to find out why she was being called she launched into a most vigorous advocacy of an approach we both want to believe in. She saw me, she acknowledged the wonderfulness of my family, she recognized my role as primary decision-maker in my treatment, and she was compellingly on my side.

My baby doctor, has graciously stepped aside, but not away. Taking her cue from these senior doctors who are sending her many emails a day about me, she is in action mode, doing whatever she can to expedite the many tests and procedures I need in short order. She was deferring so much that I had to tell her that I needed her to sit down with me and discuss my options because her medical knowledge made her a unique sounding board in my already wonderful collection. And today she gave me the first sign of emotional connection: an email in response to mine that said, "I was just thinking about you."

And my neuroradiologist has always been my gold standard of care. I send her an email saying I had an MRI today, she looks at it that day. The radiologist gets it wrong, but she gets it right, because he is looking at hundreds, where she really studies mine. She sees things before they appear seeable. And she calls me at home and tells me everything. Today she sat down and spent 40 minutes showing me my scans in detail. I didn't even have an appointment with her.

In fact, I didn't have an appointment with any of these doctors. Wow!

 

a poem that says what I tried to say in my last post - but much more eloquently

We Grow Accustomed to the Dark
    - Emily Dickinson

We grow accustomed to the Dark --
When light is put away --
As when the Neighbor holds the Lamp
To witness her Goodbye --

A Moment -- We uncertain step
For newness of the night --
Then -- fit our Vision to the Dark --
And meet the Road -- erect --

And so of larger -- Darkness --
Those Evenings of the Brain --
When not a Moon disclose a sign --
Or Star -- come out -- within --

The Bravest -- grope a little --
And sometimes hit a Tree
Directly in the Forehead --
But as they learn to see --

Either the Darkness alters --
Or something in the sight
Adjusts itself to Midnight --
And Life steps almost straight.