Katrina's Thoughts and Updates

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.

The incredible brain

The brain is an amazing thing. It allows us to adapt to pretty much whatever we throw at it. It can let us dream big dreams, it can learn how to achieve those dreams and it can keep us going when nothing remotely like our dreams occurs. My body is super resilient, but it is my brain that does the heavy lifting. It's amazing over the past 6+ years what my brain has helped me to adjust to: one life threatening condition after another - including three recurrences of breast cancer metastases to my brain. Who'd have thunk that a brain tumor could become routine? 

Well unfortunately my worst fears about this disease have come true. The cancer has progressed from my brain into my meninges, the tissue surrounding and protecting the brain and spinal cord. Central control has been infiltrated. This is a very bad thing. Bad in a different way than other bads have been. Median survival is 2 to 3 months, but worse is the probable course of the disease to death, with likely severe pain, vomiting, personality changes, loss of motor control, speech, etc., etc. Basically tumors growing uncontrolled and squashing your brain and pushing on nerves in your spinal cord. Not very pleasant. 

Right about now, dying from a blood clot sounds like a good option... Speaking of which, I did have an ultrasound of my liver today because something is going on in my liver - I'm waiting to hear that news. Anyway, essentially anytime I die from any cause from here on in, without me going crazy in the process or suffering the worst imaginable symptoms, you can celebrate, because it will be a good thing. Which just puts a whole new spin on it. Should I be doing that extra week of antibiotics that will require more daily visits to the clinic and more stabs in my arm? Should I worry about taking my daily anticoagulant shots? Would it be in my interest to have a glass of wine with dinner?

I hope you realize that I'm partly tongue in cheek on this, the other part of my tongue is being ground between my teeth.

And then, there is again this horrible dire prognosis, and I feel fine. They run through all the symptoms - I have none. And seriously it is a little hard getting too bent out of shape when you feel good. The trick is to refuse the treatments that will make me feel terrible and either not delay, or delay only slightly, the inevitable.

I don't know why, but my incredible brain copes with this stuff by finding it a bit funny. I'm walking toward probable physical torture that will cause all around me to suffer. And why don't we think that is inhumane and that we should be able to intervene? if and when I go through the final loss of self, but my body is still thrashing around like a chicken with its head cut off, shouldn't it be right to put the body to rest?

Sorry, didn't mean to go there, that was not funny at all.

Love, love, love.

Katrina

a little late checking in

Hi all,

Thanks to those of you who gave me a little prompt. I got all excited with Kaz home and didn't post... He seems to have had a great time in Europe with many thanks to Sally and Liesbeth and other friends who were so kind to host him and give him a great base for exploring.

I did have a bit of an annoying setback, which I can be grateful happened at a calm period of my treatment but that I wish never happened at all. During one of my earlier visits to the ER I got a staph infection MRSA, one of those superbugs that are resistant to antibiotic. Boy, hospitals can be dangerous places. Anyway, because I was on a series of antibiotics for other thing the staph infection just hung around without going to wild. But then as I started to get healthier, it sprung into action in the port where I receive intravenous medications, and was promising to become life threatening. Why is everything apparently life threatening?

I had some more troublesome interactions with my new young doctors, who just are young and inexperienced... the one gets over excited and wants to tell me the sky is falling, meanwhile the sky has already fallen for me about 20 times and there is not much that can excite me, so I just wasn't jumping to attention and rushing off to follow her recommendations. She told me that she knows, "I don't like to hear scary things." I told her I was fine hearing about the problem I just didn't find it that scary. At which point she started to make it as scary as possible. Then she just stopped and said, "I can see this is falling on deaf ears."  Well, yup.

The other one, my main oncologist is a bit calmer and I generally can cope with her, except she is determined to practice evidence-based medicine which I appreciate. But she has missed the part where the evidence is collected in large group trials and that in practice individuals react quite differently and so there is an art to the practice where you know the rules and then selectively break them. She hasn't figured that part out yet. I try to be patient with her, but I'm constantly arguing for stuff I know I need and that her rules won't allow. So we argue and I find work arounds where I can. But things have been regressing for me a bit, and I can now recognize the problem symptoms and I know what needs to be done. Somehow, my doctors who witnessed me nearly dead and then recover like Lazarus did not similarly take any interest in learning why things improved so dramatically for me when they were repeatedly telling me that I was just "at that stage in my disease." So now, I'm asking for the proven remedies and my doctor is refusing, which is extremely trying in itself, but then she went back to her position that I just need to "accept that things are going to start getting worse." At which point I lost my cool and chewed her out. She can tell me what she will and won't do to treat me, and if she wants to have a deep conversation with me about end-of-life choices we can go there too, but to just casually tell me to accept great discomfort when i have already proven that this discomfort is not necessary just wasn't happening. I lectured her about what I have had to learn to accept over the last six and a half years. And I explained (very sharply) that the challenge of living with a terminal illness is living within the paradox of accepting and fighting all at the same time. I told her I accept that I will die of this disease, and likely soon, but I will never accept that I have to be in more discomfort than necessary. Of course, because I never actually see my doctor in a private room this exchange was in front of nurses and other patients. Oh well. I kind of like her, but she needs a bit more wisdom and experience under her belt - it is not easy to be a doctor of the dying, I'm sure.

Anyway, back to my "life threatening" staph infection..... I've had to go the clinic every day for weeks to have high doses of powerful IV chemos. So hours of my supposed happy, chemo free summer days are eaten up with me in cancerland, which just shifts the whole perspective. The infection in my port wasn't clearing up, so earlier this week we did a little surgery to remove it. Everyone in the hospital was congratulating me and saying what a happy day it was. It took me awhile to figure out that they thought I was taking it out because I was finished with chemo.... NOT. I have another week at least of IV treatment, but now through the non-existent veins in my arm. Because I am pretty hard to access, yesterday I was sent home with the needle in me all bandaged up. It was very uncomfortable and I couldn't sleep, and then, when I got back to the clinic it didn't work anyway. grrrrr. Hopefully it will clear up and near the end of the month I'll go have another little surgery to put a new port in - so now I can have matching eyebrow scars over each breast.

And then it will be time to try chemo again, and hope it works again. I'm getting down to the end of the list....

Meanwhile I have a brain MRI on Wednesday to see if the funny area in my cerebellum has turned into something not so funny. And on Thursday I have a liver ultrasound to check out my portal vein clot and to see how life threatening that is at the moment.

But for now, it is supposed to be 80+ degrees and sunny tomorrow, and I'm getting a chance to play golf! I'm also looking forward to football season.

Wow, that was long and stream of consciousness venting! Thanks for listening.

Love,

Katrina