Monthly Archives: July 2009

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 3rd.

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 24th, 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

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

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.

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
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

Return to the ER – Allergy

Warning on this one, I’ll put ***when there is a bit of grotesqueness!***

Saturday the 11th, we came home with Tower Cafe food and it was so odd to come into the house. I was so uptight. Rather than be grateful that things were being taken care of, I was terribly annoyed with the bottle system for Lemon, (Tom now!) or where stuff was (because the army of women could not read my messy mind?). I was uptight and hostile, I would say.

I did not sleep well that night. I had been looking forward to Steven holding me for several nights, but I could not be restrained. I was on vicodin and a few steroids as well. Tomás woke up in the night and Judy sweetly went to get him, but I could hear every sound, every snore, and could not sleep. Sunday, I dragged the entire family to Newman Center Mass, hoping to see Father George, but he was, I guess, off for the month. How I got a magical morning with him just before surgery, I have no idea. I owe him dinner, some whiskey and the Knock Holy Water I have in the closet at the least. Lisa’s wonderful parents were there, Lisa and Brandon, Clark and Mom. Judy and Steve hung out with Tomás in the back of mass in case the baby started to fuss. Clark kept one hand near me as close as it could be. I think he was afraid I would faint. The church was hot and the woman behind me laughed that she thought she was having a hot flash due to the temperature and all the women except my own stunning mother seemed light-headed due to the indoor heat!

Upon walking into mass, Paco saw his Uncle Brandon and his whole body relaxed. As though Brandon’s presence was contagious tranquility. (It has been, truly. How are they such a magnificent pair, Lisa is focus and determination, B is tranquility.).

Paco was half drawing and half listening during mass, and suddenly said to me, that he thought the golf ball in my head was his fault. I am unsure if he thought that he had left a ball and I had fallen on it, or who knows. But then my tears came as the look of culpability on my 5-year old’s face came across. He never relaxed for the rest of the day after that. No matter what I said.

I had a scarf and lots of make up on, trying to look feminine! Extra makeup for good measure.

That night, we decided to send Judy to my mother’s for the evening. She is a huge help, but like every working nanny, she was exhausted. She went to Pensione Barbara for evenings giving everything a break for a moment and convincing Steve and I that we could do our normal life in the evenings.

That night, about 5 AM, I broke out in a nice rash. I thought it was perhaps the Vicodin for pain. Steve, being Steve, called into Neurology and when the returned the call, I learned it was a reaction to Dilantin, the anti-seizure medicine that I had been taking since Saturday the 4th, the medicine that had stopped nursing. Evelyn, the rocking nurse of Dr. Williams the genuis, said she has seen the breakouts 3 mos into the medication. So I was officially off the meds that moment. I had been taking 3 capsules at night for the previous days and was on an IV push 3 times a day when in ICU. ***when talking to the nurses who were pushing the IV, along with every other great med they gave me, I concluded that the Dilantin push made my …rear end burn. One of the nurses had said, yes, she had a patient who had said the dilantin had made him feel like his dog, wanting to drag his “ass on the floor.”*** Ah the allergic universe brings people together.

Anyway, so I was off the Dilantin as off 11:30 Monday and my mom and Judy were there folding laundry and I was trying to nap with ice on my head to get the swelling down. Evelyn had again interviewed me on post op issues and all was normal. At 1 PM though, I was in bed and suddenly feverish. This is a post op urgency and Steve called the Advice Team who waited for Neurology to reopen after lunch and Evelyn said kindly, now you need to come to ER. The tears flooded me and I could not tell my mother-in-law, whom I love but is not as calm in crisis as the Salt of Barbara. I quietly asked mom to take me, figuring that trips to the ER were going to be in the future and Steve sitting around there for 5 hours was not a good use of time. Barb did not hesitate. I took about 30 minutes to pack a purse for going into the ER and a bag to leave in the car in case I was in there overnight.

I have to admit, I was full of fear about this. The entire way with my mom to Kaiser Morse (might as well go back to Neuro land) I was close to tears, convinced that the tumor had magically come back in 4 days. Mom got a bit distracted in driving and taking the surface streets kind of calmed me down a bit.

We got there and the high temperature walking the 100 ft from the cool parking spot to the car calmed me further. Then I went in for the triage section and my blood pressure was up and the tylenol I had taken had lowered my temp somewhat, I was put in the chairs to wait for the consult (side note, ER had to call up to Neurology because they had my e-file open. Reminded me of trying to write a Medi-Cal policy 6 years ago and getting a colleague out of the darn file!). My mom walked outside to talk to Clark via phone and I used the time (a trick learned from Babs) to write the thank you notes to the primary caregivers that I thought had been truly excellent. Steve and I had picked up Tower Cafe gift cards two days prior. One, because I love it, and 2 because Dr. Williams had eaten breakfast there on July 5th, and the Nurse Vicky lived close by the restaurant. So I took the 5 gift cards and wrote notes to the 2 nurses I was closest to and the 2 Neurologists that were great and of course, Super Williams. Side note: this is a Barbara move, who I swear always wrote to our Irish cousins or some other relative when she had to wait with us in the Dr’s office. Mom came back in and when I asked her to run the cards up to ICU she did not hesitate. But just as she was going they called me in to the exam area.

I met a cool RN II named Cheryl who was about 55 and a confident, experienced gal. She kind of said, yea, I think it is the Dilantin. Minutes later a strange, very large woman showed up to push me into the CT scan. This was a bit odd since no one had mentioned the scan yet and the woman, whose name I missed, had a red vine in her mouth and a couple in her hand. (Ah, not a professional expert). She pushed me, with her red vine into the CT scan area. From there, a technician named David sweetly interviewed me and asked mom to wait just outside. It was all chaotic, the patients being pushed but really, we had only been there about 60 minutes. So it was not that long of a wait. But no one had said what the CT scan had been for. My mom quietly said it could have been a bleeding situation and I had already thought of the magic tumor coming back in 4 days. Either way, for a few short seconds I questioned whether surgery would be necessary and whether it would be something I would choose. For a few short seconds, I actually considered stopping care at that moment rather than dragging Steven further down the road of a possible invalid. The initial surgery had been so amazing, surely that was too much to ask again 5 days later. And then I had Grey’s Anatomy playing in my head and it calmed me down.

From there, David the technician was so impressed by my story, it removed all of my negativity. This is an example of these extraordinary signs I get from people. When I am even slightly low, someone (often one of my cousins or their rocking spouses) sends an email or I talk to a medical professional and it removes all the tension. I could not tell if it was out medical necessity or curiosity at first, then I realized, he just wanted to hear the happy story. He was so overjoyed by it. His enthusiasm simply pulled me out of whatever fear I had. He pushed me back into the consult room and his joy just filled both helped both me and my mom (who was already significantly calmer than I) stay upbeat.

So we waited for the CT scan and the bleeder possibility was still there. And for about 20 minutes, the anxiety returned, and my mom needed to just help me be calm and talk about the planning for the worst. Because for me, even though I have every faith in the best possible situation; even though I truly believe my path is to get in the shape of my life and turn this story into a story about all these people who have given me gifts of medical miracle and the hopes all my family and friends have given me, I do feel as though I need to plan for the year ahead as though it were my last. Not to be negative, just to plan it and be done. Then focus on beating the plan. And for a few moments there, I was in tears that I would not see Tomás be Paco’s age. That the tumor, likely grade 4, could make me a great beater of the odds, but there was still this 1-1.5 year survival average. And as a result, I would never see my baby swim, I would never hear him speak to me in Spanish sentences and I would never have the joy that I had with Paco of dragging Tomás to a penguin colony in the middle of the Argentine Coast. And in my heart, as a stay-at-home mom who has had fabulous part-time work from the two cool outlaws in the Canty group support my mental health the last 5 years has given me a love of being Paco’s primary parent while Steve supported us. To face a future where Tomás would have to go to daycare, and Steve would be a single parent, broke my heart in that moment. Steve was in fact looking into daycare while we were at the hospital. And my mom, just sweetly stood there and told me what she had read, how while it was good to have the plan, I was at the other end of the statistic, the early catch, the surgery, the age and gender. And again, I calmed.

So I asked her if I could nap and she offered to take the thank you cards up to Neurology and took off tackling the task. (She has a good story here that I am making her add!)

The ER Doctor on duty, Edwin Enriquez popped in as well as Cheryl, the cool nurse here and there. They put me at ease. My fever was back up, but Dr. Enriquez did neuro-tests and thought I was doing great. He ordered a Chest XRay to ensure no infection and was waiting to hear back officially from the on call Radiologist. I did have to manually extract milk in there, that was actually kind of funny. Cheryl commented she thought the entire thing was the reaction to the Dilantin and that bendaryl would fix me up. Mom came back and Dr. Edwin came in and checked me again, then waited for the consult from Neuroology on call (now it was after 5). Neurology prescribed a new anti-seizure med and Dr Edwin said, “you are going to take a bunch of benadryl for the next 24 hours.”

Cheryl came in with the benadryl and I took it, then waited for 20 minutes to get cleared to leave. My mom and I had been talking about food most of the afternoon. She had offered to swing by Tower to pick up food to take to Davis. But by the end of of the 3-hour wait, there was food at home. We walked over to the discharge pharmacy and picked up the new RX for the seizures. By now, I felt amazing. I felt the best I had felt in months. As we waited for the RX consult, an African-American man, about 50 was staring at my head. He said, “I like your head” Mom said something about how she thinks it is shaped so well. I joked that my husband wanted to shave my 5-year old’s head, but Paco would not do it in unison. The man asked if my husband was Caucasian. I said, yea, he needs to tan his head if he does it. The man said, that is why. He should, and then it will be tan fast enough. But it won’t be as cool as yours. I still had the staples and the Frankenstein look, but he was making me feel groovy.

Upon talking to the Pharmacist, I asked him to look up the new drug, Keppra, and ensure I could not breastfeed on it. The pc froze and he apologized. I said, “tell me no, it will just be easier.” The papers that came in the bag actually said it in print.

Walking out to the parking lot that I had grown up coming to for every Drs appt. I was so overjoyed. Within one hour of the benadryl, I felt amazing. All the negative, normal, post-op side effects, were not that, they were the reaction to the Dilantin. My face had been swollen normally post-op in the morning, now the swelling was practically gone. Cheryl and Dr. Edwin had both said an arm injury I had would slowly get better as Dilantin was hard on veins.

And I was walking on air. I made mom go to the Chick-Fil-A drive-thru close by to get their good waffle fries on the way back to Davis. My mom, who never eats in the car, actually shared my chicken wrap and the fries. She even sipped my diet lemonade! The joy and celebration of her support brought me back.

Upon arriving back in Davis, my mom wisely took my overloaded mother-in-law back to her house, and Steve just held me tight, and we talked about the boys. My mom said to Judy that she was concerned I was hyper. She was right, but that is a steroid story.

Much to Add

I am never getting caught up on the joy that friends and family have brought! More to come. But in this moment, I am bizarrely tranquil. I cannot sleep (I can never sleep anymore, and with 2 kids, finding time is valuable even for doing laundry), I am so excited to see the surgeon today. The future is what it is, and we will fight it. More to come.

I have to post my allergy story first. then I need to do the steroid experience. But man, I woke up early, snuggling Paco, and Lemon just woke up full of smiles and kisses. I spent last night eating sushi with my friends, celebrating Vivian’s engagement. No matter what, life is good. Excellent, even.

A side note: the women of Centro Armonía have been sending us notes. Thank you! Paco misses you all very much. I think being without you has been the hardest for him. Gracias!

Photo of Father George From 5 Years

I love this photo. Am going to try to post some photos of the wonderful hands I have touched the last 3 weeks. If anyone would prefer not to be posted, please let me know.

Paco and Fr. George. Pax.

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