Orienting to the Spa of Radiation

Dr. Williams had dropped me into the schedule of Dr. Allan Chen, a radio-oncologist. You get two experts trying to sustain your life: A radio-oncolgist who does the burn, then an oncologist who does the chemo and the longer-term plan. The oncologist who is not only one’s general guide, but also in charge of what drugs may work. The one we wanted was on vacation this week and there was only a slot open earlier by 2 days. So it seemed worth it to wait for Dr. Adams, the head of the department for Monday the 3^rd.

This week (I think it was Tuesday, the world is a blur), Radio-Oncology had me go in to do the initial review of my file and a sort of…orientation of the program. Thanks to Shannon the baby-sitter, she took Tomás and her sweetie Mateo-potato while my mom came in with me so I could actually give Steve the morning off of being my escort.

In meeting with Dr. Chen, I was…impressed. He is both an MD and has a PhD, so was also great at showing us the evidence. He walked my mother and I through the MRI scans, and pointed out where the tumor had been, then the cavity it had left behind (I am still unsure as to when and how my brain is resettling. Need to ask someone eventually. Is there now a hole of information that is making me not able to recognize homonyms?). He remarked, as all have, that the surgery was particularly successful. He gave us the worst-case numbers, as he said he had to, but also expressed hope at the uniqueness of my situation. The Giant Cell, my age, and the success of the surgery all played into a higher hope of survival. He also remarked on his own experience at the National Cancer Institute, they had seen a case as mine for 20 years and it was still the one the interns got to be awed by every year. (He did not share that until I gave him my personality disclaimer: tell me the worst, and expect to beat it).

So the radiation will be every week day for 6 weeks or 30 sessions. Probably starting next Wednesday, though we have to wait for the official ok from Dr. Adams, in Oncology. However, Dr. Chen was going forward with calculations and plans as to maximize time. He also remarked that he thought I would not have the side effects except the fatigue. And he said if I could get a 15-30 min nap in, it would probably aleiviate it. I commented that I was thrilled to stop the steroids for that sake. Then he gave me my list of neuro-development to ensure the brain swelling had stopped, or else I was back on the steroids. I think as long as the vocab and such stay where they are, I am ok as far as swelling goes.

Dr. Chen spent over an hour with us. He was quietly paged three times in the session. A nurse asked me how I got on his panel. (I think he is considered the best). It turns out minutes after my appt with Dr. Williams on the 24^th, a patient had decided to switch locales and Dr. Chen had just transferred the patient to another site. Then Williams dropped me into Dr. Chen’s panel. Dr. Chen wondered how I got in there so fast.

From there, Dr. Chen said they had another cancellation for the masking, so mom took over Lemon (so Shan could actually go get Paco’s fiancée from summer camp) and I went into the masking area to get the marks done for treatment next week. Terri, one of the technicians, also gave me a quick tour. It is actually a very nice facility. There is an exam hall and a treatment hall. The treatment hall comes with dressing rooms and such to change in prep and the staff is all so upbeat that I can see it stopping you from getting too negative.

Then a great technician (seemingly Terri’s partner in crime) named Ben worked with Terri to take my mask. I was in the casting for about 20 minutes and I was fine (wanting hot mud and warm towels to relax further)…until Ben came up to me with a camera and took a photo. I swear I thought I was dressed up with my cousin Alan to make a show. I started cracking up in the mask and Ben could not tell if I was choking or not. I had to put my hand on his arm and give him the thumbs up. I warned him not to crack me up anymore. He asked why my attitude was so good and I explained my friends and particular my cousins, my family and my in-laws. He said very sweetly and earnestly, I was lucky. His parents had died when he was young, he was raised by his grandparents who were now gone. Ben seems like a nice guy, full of joy. And his reminder to me of how fortunate I am was completely appropriate.

From there I met with the nurse who I had a good conversation with about my head and skin issues (she told me how I can swim, it involves using Aquaphor to create a seal in the swim cap. Will try next week). And we discussed the hair issue and not wanting to look like a cat with mange.

Then I met with the dietician who…get this…had lived in Buenos Aires! Anyway, she pointed out something obvious…not to overdo anti-oxidents during radiation. Apparently, the idea is to not make the cancer cells stronger. You want them to be as weak as possible so the burn. No prenatal vitamins for the month (I have old bottles to use up) and no real supplements. It makes sense, but I had needed it pointed out. I asked her about mercury, now that after 6 years of being pregnant, nursing or trying to be pregnant, I was in my own zone. She said, “go for it.” Ah, tuna sandwiches all the time. And mackerel sushi. Gari Saba Make. My roll.

Thanks to my mom watching my loud baby, it was a 4-hour effective orientation to radiation. From there, I went to Trader Joe’s for the first time since leaving the hospital. I bought too much food and some sake. Had to celebrate the beginning of the fight.

You Sound…Happy?

One thing I have noticed is that people can get confused about my positive attitude. I think for them, they see Grade 4 and the stats and get…freaked out. But what they cannot see is all the roads that I was not forced down. The reality is that given the situation, the cancer fight at this stage is not even close to being the worst-case scenario that could have happened.

I had read about a woman who was 33 and started to suffer grand mal seizures while 29 weeks pregnant. They had to do a c-section and then were not able to resect the entire tumor. She never seemed coherent with the baby. If I am remembering correctly, she ended up in a coma.

Therefore, it is easy for me to kiss the baby and be grateful that they found out when they did. If the tumor had been ahead of the time-table, just a bit, we would have been forced with awful choices about sustaining Lemon vs. sustaining me. Awful choices had we found out when I was 5 mos. pregnant. So in the end, I have a baby who giggles and whom I was able to nurse for 4 mos. I did not die in advance of the discovery, I did not end up in a coma from the surgery, nor did I die on the table. There is no obvious tumor left in my head (it is the tiny cells we worry about and try to kill) so I have a huge advantage over most Gliobastoma patients.  In my head, my path is still a gilded one, when one thinks of the negativity of the situation, I still feel fortunate that I am this ahead of the game. Then again, I have some gilded doctors to guide me along (and the love of a life in Steven).

Lemon and Aunt Patricia

3 Days of Celebration that Babs turned 75.

So we had this great plan. There was a party scheduled a few weeks ago, then we were all going to Washington DC to celebrate my mother’s actual birthday while she was in a bridge tournament. When her youngest child was diagnosed with a brain mass, she canceled it all.

For a while, it seemed my beloved family was forgetting to celebrate the wonderful marks in our lives. We got together for my cousin Jim’s funeral 5.5 years ago, then his father died 1.5 years ago and we were together for that. There were other parties and gatherings though nothing…huge. But it was not until this year that we finally got together to celebrate a brilliant graduation of the next generation (go Lloyd) and I made everyone celebrate my Tomasito’s baptism. Then, right as we were gearing up for my mom’s birthday, my drama, my crisis, killed our big plans.

Somehow, the surgery kept me a social person (side note: I think a symptom of the tumor is that I became introverted over the last 6 mos. Me. Introverted. Does not make sense).  And I really wanted us to get together to celebrate mom and for my rockin’ cousins and aunts and uncles to see that I was walking and talking as annoyingly as I have since I was a baby.

Me to my mom: They want to celebrate your 75th (my mom is the oldest of 6 (5 suriving) siblings). Mom to me: They want to see you alive and walking.  Deal.

My mom is originally from Oakland, CA. And I have to admit, that is my poetic homeland. The majority of our family still live there or close by. Down on Piedmont Avenue is a 114 year-old historic creamery (note here: we come from a line of dairy farmers) that most of the cousins grew up going to and still go to now and then. The oldest of us 20 grandchildren was born after my aunt went to Fentons for a strawberry shake. (She tried that labor inducer for the other 4 kids, but it never worked again.)

Anyway, they built a Fentons Creamery in Vacaville, about halfway between Sacramento and Oakland. And my cousins, true to their form, came with the request via email to celebrate with us. My Aunt Patricia flew in from Denver, starting the birthday cake on Saturday at my place, then the ice cream on Sunday and then cake with the first grandchild/cousin (just having turned 50) on the actual birthday.

Dave (#1) and Tomasito

My mom actually said that it was a better celebration than she had planned. My cousins who live in Seattle, Denver, Albuquerque and Austin all went to their local creameries and sent photos of their in sync communion via ice cream.

Special thanks to my Amanada who called to book the room. And Fentons saw me and my shaved head twice as I used every excuse to drive the 20 minutes from Davis to Vacaville (to be fair, my mother-in-law and mother had to chauffer me there). The staff could have been freaked out by my story, but no, instead they were intrigued and did all to book the room in the back, for the Canty gathering.

The younger kids came in and got all sugared up (Paco no se portó bien, él comió helado y no proteína!). And we just were…together. I did not see Tomás most of the time. I heard him cry once. I changed his diaper twice and got giggles. But usually he was in the arms of a cousin getting love and kisses and getting carried around by an experienced mom or dad. We had said no gifts for my mom, but for me, everyone wanted to do something. There was wine for the surgical genius (that I have to sneak in to his office every chance I get!) and words and love for me. My favorite, I have to admit was cousin #18 (since I am #19) brought me two very, very cool hats. He knew my head would be burning soon. And he dressed me well. They will be worn soon (in the mean time, I am curing my head in the sun).

One team of cousins has instilled the exercise routine within me. Note to the coaches Ken and Dave: I went for an early morning walk today. It is only 92 tomorrow, so I will try to do a mid-morning walk.

I am stealing one of their dogs (whom I adore) for 2 weeks as I know the sweet dog Ruby will get my routine in gear.

There was also an eye-opening attendance. It is easy to look at my head and age and see the brain tumor as a shock. To see it as a tragic story is something for those who need to focus on the negative. But I looked around the room and there were at least 3 who had recovered from some form of cancer, long before I ever had a CT scan. It is easy to look at the drama of my situation and think it is something rare. And yes, I suppose statistically, it is. But there are so many people who have one of the many varieties, that I would never feel alone in the situation. Yes, I am under 40 and this future of glioblastoma seems dire. But look around your office or your neighborhood and there is someone who is undergoing radiation for another type. And they too have every reason to fear mortality, the side effects of radiation and chemo, the limits that may lie ahead. I look at the average cancer patient and I just feel so…lucky. Because I have this team of coaches, of nannies, of cooks, of friends, of organizers, of confidants, including my godmother making me a hat for fall when my head is raw and cold.

It says: LiveStrong. Of course. Thanks to them. I will.

Explaining.

I had to explain to Paco about the radiation and the burning to prevent the icky stuff from coming back. He asked what it was called and I was honest. He asked what the worst kind of cancer was and he remembered Elyse (we talk about her every once in a while). I did then try to tone it down that two of our good friends have prostate cancer and over 20 years ago my mom had (non-evasive) cancer and that put him at ease. I am fine with him knowing I have cancer, but I cannot have him knowing the statistics for the future. Knowledge of the fight is fine, but not of the numbers. I am Michael Phelps for training. That he will get.

Paco the Great.

Endless Gratitude.

Ah, who knows where to start. Yes, will get more into it tomorrow.

But specifically, I need to say thank you to Chris Yatooma and Shannon Brink. They met us at Fairy Tale Town this morning at 9:30, took our boys and had an outing with them all day while we met with a surgeon and spent the afternoon pursuing medical records to get over to UCSF ASAP. We finally returned about 5:30! Paco and their daughter Kellyn are engaged, apparently. Their adorable Mateo is the one I have to kiss all the time. He and Chris shaved their heads out of solidarity. (Not my best, but Mateo is so cute!)

Solidarity

This couple of 10 years, lost their baby girl (5 1/2 weeks old at the time) to cancer 4 years ago (http://babyelyse.blogspot.com/). Elyse’s story is tragic (and heavenly) and some how they both look at it with resilience. What I have relied on most is that they take my occasional tears with steps and understand the quick release, then the moving on to take on the task.

Shan, in particular, looks at the rarity of my cancer to be the opposite of Elyse’s rare cancer. Her words, mine was meant to overcome.

Meeting with the Great Surgeon.

Today I had the pleasure of seeing my beloved Doctor Williams, humble surgeon-at-large.  This was in order to get a check up on the incision and the pathology results. We had an inside path to the pathology results thanks to La Radiológica Mágica. She, full of professionalism and class, had warned Dr. Williams that we already had knowledge .

First, he met with me and did a basic neuro test (100%!). I think he was surprised by my positive nature and preparedness. I was also bearing champagne from cousin #11, Kathy, and her beloved Lloyd. And the Gamay Rouge from V. Sattui that I had promised him in the minutes after the surgery. My Murai (Japanese word for village, and the surname of my Vivian) had picked it up for me in St. Helena over the weekend.

After the initial clearance of my health, he went and got my mom and Steve and we discussed the future…

Steve here with the technical details:

There were two different diagnoses of the type of tumor, both of varying degrees of cancer.  The pathology based on the small frozen section analyzed during surgery showed a Grade 3 Astrocytoma (primary brain tumors are graded 1-4, 4 is worst).  The radiologist’s prediction based on the MRI, however, and the final full pathology report confirmed that the tumor was the worst level of brain cancer, a Grade 4, known as a Gliobastoma Multiforme (aka GBM).

Statistically, this is not promising as there is a 50% one-year survival rate (or  alternatively, a median survival expectation of about 12 months for all of you statistics geeks). And there is a 5%, 5-year rate (for non Giant-Cell people). Now, these stats should be taken with a grain of salt.  They include people who did not make it into diagnosis, who died on the table or did not make it out as well as Erin did.   A “gross full resection” like Erin had appears to be an exception, not a rule, and she appears to have no apparent loss of brain function to boot. As nuestra Radiólogica Mágica says, “you are at the other end of the bell curve.” We’ll take whatever good news we can get.

To add hope to the statistics of a “common” GBM, the pathology confirmed that Erin’s tumor is a rare subtype called a Giant Cell Glioblastoma Multiforme (GC-GBM… and I  thought that there were a lot of acronyms in the corporate world).  There appears to be very little data on this type.  However, the data that does exist points to a longer median life expectancy… it is just difficult to know how much but some of the studies show survival in terms of years rather than months.  We have been told and have read that these tend to keep to a smaller area and resemble a distinct ball form rather than grow “fingers” which may partly account for the ability of the doctors to remove so much of it during surgery.  I always knew that Erin was one in a million and now have proof.  It appears that only a few hundred cases of GC-GBM are diagnosed in the U.S. each year… or <5% of GBMs.

This is Erin again…it seems as though the Giant Cell point changes the spectrum of opportunity for tackling the tumor. I don’t intend to be dismissive, I just have this incredible feeling of power and hope. As though we are meant to conquer it, with everyone’s help and joy. I am a dork, though. Steve is mapping out immediate opportunities with clinical trials and ensuring we have access to treatment. I am planning ahead for 3-5 years for the next round of trials, I found studies overseas in Germany, so I am making Steve apply for his grandmother’s citizenship, just in case we have to move to Europe!

I have no way of explaining my hope and fierceness. It is Canty-powered.

Love, Erin

More on the Jul. 13th ER visit – from Barbara (Erin’s Mom)

It was about 7 min to 5 and Erin thought that it would be good if I delivered before 5pm the Tower Cafe gift certificates which she had bought for 5 of the doctors and nurses who had been particularly helpful to her. I asked an attendant which door I should take to get from the ER treatment room we were waiting in to the clinic. She told me I had to go back to the window in ER and get a permit! I finally convinced her that I wanted to get out, not in, and she led me in the direction of MTU – I later learned that meant Medical Treatment Unit. I recognized the area as being the old pediatric area when my kids were little, and found the escalator to Neurology.

The office was already closed, so I then went to ICU in the hospital and entered the nurses area immediately across from the elevator. A friendly nurse asked if she could help and I said that my daughter had been in ICU the week before and wanted me to deliver these envelopes. She asked my daughter’s name. She was familiar with Erin’s case, but had not actually been on duty for her. She said that her own maiden name was Haas! She would give the certificate to Ana immediately and have the secretary send the others through interdepartment mail.

When I returned and tried to get from the clinic to the ER area, I was met with a maze of locked doors. I finally went outside and entered the ER from the outside door. Fortunately, there was no one in line at the window, and when I gave Erin’s name, I got a Visitor permit which I attached to my sweater. I got there just in time for the final word from the ER doctor who thought that all of the problems had been a reaction to the anti-seizure medicine. (It is being given to her as a precaution. She has not had any seizures.)

That was all on Monday afternoon, the 13th. Last Friday I wore the same sweater to have my teeth cleaned at the periodontist, and the hygienist asked me where I was a visitor. I hadn’t realized I was still wearing my tag. I told her Erin’s story. When I went to leave she gave me a bagful of goodies for Erin .. for patients undergoing radiation treatments who frequently complain of dry mouth. Everyone is helping Erin1