Back home and missing Joaquin

It’s now the 4th day in a row where I haven’t felt like I need to be in a hospital! YIPEE!!!

It’s so very nice being home and feeling well, but I feel such a huge void without Joaquin here.  My current challenge is how emotional I am about not seeing being able to see him  Since I was so sick while in the hospital, I’ve probably only held him a handful of times.  It’s now been about two weeks since I’ve even set eyes on him in person and it’s taking so much strength to get through this.  I’m praying with all my might that my test on Thursday comes back negative for c.diff and I can race over and see him, love him, hold him, read/sing/recite sonnets to him etc.  All I want is to bond with him and let him know he’s not alone.  It breaks my heart knowing he’s alone in his incubator listening to constant beeping and crying of other babies.  It’s not exactly how I imagined his first month of life to be.  I at least thought I could be spending more time with him in the NICU.  So….big prayers for negative test results!

Until then, I’m playing with ideas on how to turn his NICU incubator into a more personal place filled with love! Art, blankets, pictures and eventually some preemie clothes (he has to gain another pound or so before they let him wear clothes). Any other fun ideas for NICU personalization?

Much love,

vivian

17 Days in the Hospital – A Summary

A week ago, I started to write one of my more detailed blog posts about my journey in the hospital that started on July 6th.  But as I was writing it, I started feeling worse and worse and ended up back in the hospital.  I’ve been updating a bit on Facebook, because that shorter format is easier for me, but I never could get back here until today.  I won’t do my big detailed post…but i can at least give you some bullet points.

July 6th – Admitted to hospital for observation of Joaquin.  Had Preeclampsia.

July 8th – C – Section (Joaquin is doing great, so in love with him!).  Began suffering from Spinal Headaches from Epidural injury (blood in the brain).  Also had trouble stabilizing High Blood Pressure from eclampsia.

July 10th – 16th – Ended up in ICU with swelling in the brain from high blood pressure.  Lost all cognitive skills….don’t remember much of that night. CAT scan.  MRI.  Stayed in ICU for two nights.  The remaining days I stayed in the Stroke risk ward while I stabilized.  I was diagnosed with P.R.E.S. Syndrome (swelling in the brain that is already showing great signs of resolving itself).  It could’ve been fatal if Sasha and I hadn’t intervened (more on that another time)

July 16th – Released from the hospital with blood pressure medications and anti-seizure meds.

July 21st – Still feeling good and went to my first audition since chemo started!!!  It was a great empowering experience

July 22nd – Woke up feeling like I got hit by a truck.  Started having a low fever.

July 25th – Still having a fever.  Losing ability to read, make decisions, focus etc.  We went to the E.R. and they found I had very low sodium in my blood (which can lead to stroke).  Stayed a few nights in the Heart and Telemetry ward.  Renal Doctors on the case for the sodium.  Infectious Disease on the fever (no signs of infection in blood or urine).  Put me on Saline IV to boost my sodium

July 26th – Feeling so much better with the Sodium!!

July 27th – Had diarrhea, which was a quick sign to check for C. Diff. and put into Isolation.

July 28th – Tested positive for C. Diff and moved to the oncology floor.  Still in Isolation. Started antibiotics.  Also found out I booked the commercial I went out for!!!

July 29th – Already showing signs of improvement.  Lower blood pressure.  no more fever.  better poop 🙂

July 30th – Sent home!  Feeling better than I have in a month!  Just gonna rest for a while.  Finally.  So looking forward to working on this commercial, too!  It will help pass the time while I can’t see Joaquin ❤

Joaquin is doing so well!  Everyone in the NICU loves him and taking such good care of him.  It drives me crazy that I can’t see him while I go through this C. Diff stuff, but I know he’s in good hands.

I don’t have the energy to post photos right now….but there are some good ones of Joaquin and this whole experience on Instagram.  my account name is vivavivian.

looking forward to posting more in the future….things just got a bit hairy over here!

Things are looking up.  Focusing on healing body and mind.

So much love,

Vivian

Pasture Beef Bone Broth Recipe

Some of you have inquired about the broth I’ve been making during treatments.  The recipe is from a cookbook called The Cancer Fighting Kitchen by Rebecca Katz and Mat Edelson.  I feel a major difference in my overall health when I drink it.  You can do a quick search on the benefits of bone broth and see if it’s something that can help you too!

Ingredients:

  • 3 lbs marrow bones from grass-fed beef
  • 6 unpeeled carrots cut into thirds
  • 2 unpeeled yellow onions, cut into chunks
  • 1 leek, white and green parts, washed and cut into thirds
  • 1 bunch celery cut into thirds
  • 4 unpeeled red potatoes
  • 2 unpeeled Japanese or regular sweet potatoes quartered
  • 1 unpeeled garnet yam, quartered
  • 5 unpeeled cloves of garlic
  • 1/2 bunch of fresh parsley
  • 1 8-inch strip of Kombu (dried seaweed found at the Asian market)
  • 12 black peppercorns
  • 2 bay leaves
  • 1 Tbsp apple cider
  • 8 quarts filtered water
  • 1 tsp salt

Procedure:

  1. Preheat oven to 350F.
  2. Place the bones on a baking sheet or roasting pan and roast until the bones are well browned, about 30 minutes.
  3. Rinse all the vegetables well, including the Kombu.
  4. In a 12-quart or larger stockpot, add all the ingredients (bones, veggies, spices), add water, cover, and bring to a boil.
  5. Uncover, reduce to a simmer, and skim any scum that rises to the surface.
  6. Simmer gently, uncovered, for 8 to 24 hours. A long and slow cook time is necessary in order to fully extract the nutrients in and around the bone. As the broth simmers, some of that water will evaporate, add more if the veggies begin to peek out.
  7. Remove and discard the bones, then strain the broth through a fine sieve and discard vegetables. Stir in salt to taste.
  8. Cool to room temperature, and then refrigerate overnight.
  9. Skim off any fat from the top of the broth. Portion into smaller airtight containers and refrigerate or freeze. Store in the refrigerator for up to 4 days or in the freezer for up to 4 months.

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Adjusting to new course of treatments and a 24 hr hospital stay.

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In the hospital for 24 hrs for observation after steroid injections

Facebook Post:  28 weeks. We received news on Tues that baby J is measuring too small for comfort. They don’t know if it’s b/c I’m super small or b/c of the chemo. In the case that I have to deliver early, they want him to be as ready as possible. This means steroids for the little guy to help his lungs develop, and it also means I will be having my last Chemo on monday (at least until baby arrives….not sure what the plan will be after that)

I wanted to go full term (I may still get close) I wanted him to be big and growing closer to normal. I felt helpless and guilty and cried a lot. This isn’t the way I wanted any of this.

Worrying, stressing, and fear will not get me through this.

For me, I do tons of research, educate myself, ask questions, find people who have gone through exactly what I’m going through (Thank you, Mara!), allow the breakdowns, then let go, and move forward with complete faith that no matter what happens, we will all grow from this and hopefully live fuller lives filled with love. Oh yeah, love. Can’t do any of this without love (for myself, for others, from others…especially Sasha….couldn’t do any of this without him) 💕💕💕💕

Facebook post after a massive outpouring of love and support:  

Just gotta say that there is not a heavy drop in my heart today because of you guys. Thank you for all the support and love. You lift me up during tough times…and boy, does this world support and lift me too.

My hospital, Providence St. Joseph in Burbank, just continues to ooze love. I noticed it 2.5 years ago during my first surgery here and it continues today. Absolutely everyone I encounter has so much love in their hearts and goes above and beyond to make a difference with their patients (my nurse just brought me a “mocktail”). I also feel safe and supported with my team of doctors and every nurse/admin/volunteer here is a total bonus too.

Just as I was writing this, I was visited by the resident priest who came to pray with me and give the Eucharist. Beyond loved. Thank you.

Home now:  I’m home just in time to clean up the house, and make a new batch of Beef Bone Broth in preparation for Monday’s chemo.  I’ll post that recipe after this post 🙂 Excited for this to be my last chemo for a while!!! Yay for a break!

Chemo #3 Update

It’s been about two weeks since my last post and what a roller coaster it has been!  My mom went back home for a while and we miss her like crazy.  But after a month together, we were able to see that we didn’t need her as much as we thought….which is a good thing!  It means I’m doing well and can handle this!!  She’ll be back later when it’s time to greet baby Joaquin.  As you can see in the photo below, he’s growing like a champ! I’m working hard every day to make sure I’m eating well to keep him (and me) healthy.

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After my mom left, Sasha had an extremely busy work week, so I was left in solitude for the first time since before my first chemo.  I realized it was the first time I had allowed myself to truly honor this experience….fully.  Yes, some of these feelings had come up now and again and yes, I can be open with my mom about what I’m going through, but there was definitely a sort of “bravery” I’d put on for her (I think we were both doing it).  So, in my solitude, I “went there”.  I cried, I was angry, I felt helpless, I was sad, I felt sorry for myself and allowed any other dark emotions to pass through me.  Some emotions lingered longer than others as I struggled to find joy.

After a few days of this, the dark part of my experience began fading away.  I felt lucky that the weather was corresponding with what I had been feeling.  The days had been chilly and gloomy.  The sun was hiding and so was I.  Just as I was turning the corner…so was the weather.  Sasha encouraged me to go outside.  I did.  I sat on our back steps and the clouds had cleared and were letting the sun back in.  I focused on my breath and let the simplicity of life back into my body.  The sun shone on me, the birds reminded me of the songs of life and I was grateful to be alive again.  I could feel love seeping back in.

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It’s important to honor the experience before jumping into warrior mode.  I was doing well with the flow of emotions immediately after the diagnosis (lots of healthy releasing etc) but I feel I delayed a lot of my current emotions in order to protect my mom from becoming worried about me.  She never asked this of me…it’s just something I noticed after she left.  Now, I’m back to the day by day honesty of how I’m feeling.  Every day is different.  Every day I start over.  I let the emotions pass through me and try not to attach myself to them.  I acknowledge them and let them go.  Sometimes I sit with them a little longer, but every day I look for love and try to keep it as close as possible.  Some days are more difficult than others…but I just keep starting over.

Chemo #3 happened last Monday.  I still have difficulty preparing myself to go through with it.  The fear of the unknown is still there for me, but this time, I made a bit of time to center myself, do a bit of yoga, and engulf myself with love and light.  It was an incredible help and I’ll make sure to make time for that in the future too.

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The infusion itself was non eventful (which is good!) and I was so grateful to have taken it so well.  I hope this is a pattern that continues for my future treatments.  My infusion nurse said it has everything to do with attitude…I’m starting to believe her.  Here we are right after the treatment feeling like champs 😉

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This last week after chemo has been different than the other two times.  While the other two treatments knocked me down immediately after, this one didn’t.  I felt pretty normal…just tired.  The same could be said about the following days after chemo.  I was overall just more tired than usual…but all very manageable.  No nausea…just sleepier.  Sasha enforced a strict “no work” policy on me and made sure all I did was watch movies and eat.  This was extremely difficult for me as I usually insist on staying busy even if it’s from bed. But I’m glad he did.  It really helped me out and helped my body get the rest it clearly needed.

I finally turned the corner energy-wise on Saturday.  It’s such a distinct feeling to wake up and just feel “clear” after being so muddy for many days.  I took advantage of it and did some cooking as well as tons of laundry.  I felt very grateful to have the energy to be able to do such mediocre house tasks.

Now, I move forward with my daily spiritual practice of embracing love and letting my soul experience freely, continue nourishing my body (the magic bone broth recipe is coming soon!) and mind (trying to get my hands on a copy of A Course in Miracles), connect to the joys of growing a baby, navigate the healthcare system of insurance and billing, create a baby registry, prep the house for baby, learn what to do with a baby (eek!) and maybe take a birthing class or something 😉

Wish me luck!

Vivian


Good News!!!

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All of us here at the Viva Vivian camp are super excited to share a couple of pieces of excellent news.

First of all, I went in yesterday for my weekly blood count check and it was PERFECT!!!! After my 1st round of chemo, I had been struggling with keeping my white blood cell count up.  This made me feel extremely fatigued and of course more vulnerable to infections.  Mom and I did some research on how to boost white blood cells through nutrition and went to work (Beef Bone Mineral Broth has been a huge help).  I also added Iron, Vitamin D, Calcium, and Magnesium supplements to my daily regimen.

I must say, when I woke up yesterday, I knew I was good.  I could feel LIFE in my whole body (unlike how I’d felt over the weekend) I was even to able to do some much needed early morning Yoga. But getting the confirmation from my oncologist that all my bloodwork was fantastic lifted me up even further.  I’m still taking it easy physically as to not burn myself out….but I’m just so happy to be feeling so well.

Next, remember that pesky swollen lymph node that started it all? Well, before starting chemo, it was about the size of a chickpea or grape.  I found myself avoiding the area all together since finding out it was cancer.  I barely wanted to touch it.  It was the source of all my pain and I wanted nothing to do with it.  Occasionally, though, I’d send the area loads of love letting it know I didn’t need it in my body anymore.  It could go away.

Well.  It’s going away!  Last week, my oncologist noticed it was getting smaller.  Today, it’s about the size of a super tiny pea! It’s all working, and all the suffering through chemo has purpose.

Now, I continue on.  I keep fortifying my body.  Love everyday that I get in this wild world, and look forward to the grand prize in the form of a healthy, beautiful, baby boy.

Thank you everyone for your support, love, prayers, light.  I feel it everyday.

So much love,

Vivian

Chemo Round 2: Update

Ay yay yay….that was a doozy of a week!

Last Sunday, I was gearing up to go in for my 2nd round of chemo. Psychologically, it’s difficult to wrap your brain around getting injected with poison.  But then, you have to ease into it, trust that you’ve made the best choice for the situation, believe that it’s all part of something bigger, and face it head on with a strength that is seeded deep within us all.

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Monday morning, we went in as ready as we could be and the pre-process went better than last time.  There was no difficulty with the IV where I almost fainted after my vein lost a small battle with a needle.  IV was in with the first try and I was then ready for the infusion.

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After my last treatment, I suffered from some pretty gnarly “chemo mouth sores” which made it close to impossible to eat anything other than soups.  Seeing as gaining and keeping weight on during treatments is one of my main goals for a healthy baby/body…I did everything I could to avoid the mouth sores this time.  Being the Research Queen that I am, I read that some patients had major success of avoiding mouth sores by eating frozen stuff before/during/after the infusion.  I decided to give it a try and froze some Trader Joe’s Watermelon/Cucumber juice.  It was fun for the first 20 minutes or so and then it became increasingly difficult as I quickly grew tired of the sugar/flavor/being cold.  But I’m so glad I kept up with it because…so far so good….no mouth sores!!!! But next time, I may dilute the juice a bit more so the sugar doesn’t make me feel ill.

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Back home, I spent some time outside getting some fresh air, drinking my green juice with a Viva Vivian bag full of goodies to keep me occupied.  But all I really did was alternate from listening to the birds, meditating, and listening to music with an extra pair of headphones for baby Joaquin in my belly 🙂

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I grew tired quickly and spent the rest of the day in bed with Smooch.  As the evening came, I began feeling more fatigued than I ever had in my life.  About a 2.5 out of 10.  It was scary.  I could barely keep my eyes open or even stand for very long.  I’d never felt like that before and I feared how long it would last.  It’s so difficult to stay positive when you feel so low.  I centered myself around my breath. I surrounded myself and baby in white light.  I meditated and prayed with a strong and vibrant heart.  I fell asleep hoping for the best.

I woke up Tuesday morning feeling like a new woman.  The fatigue was gone.  Hope was flowing, and I looked out my window at the morning sun with so much gratitude that I had made it through.  I went to see my acupuncturist and she helped me feel even better.  I came home and felt deeply, deeply, happy for the first time in months.  Sure, I had felt moments of happiness or quickly fleeting joy, but since the diagnosis in March, there’s been a sort of heaviness within me that had been difficult to shake for more than a few moments at a time.  Staying positive and filled with light takes so much more effort during difficult times.  So when I recognized that happiness on Tuesday, I stopped in my tracks, put my hand to my heart, bowed my head and let it sit in.

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The rest of the week was kinda bumpy.  I never knew how I’d be feeling from one moment to the next.  I would have spurts of energy followed by big, big, lows.  Something that helped me get through has been this Beef Bone Mineral Broth from the cookbook The Cancer Fighting Kitchen.  What an energy boosting drink!  But even with all my supplements and nutritious foods that my sweet mother was making for me, I found myself fighting fatigue this week with all I had.

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On Friday, after being cooped up in the house all week, we knew we needed to shake things up no matter how we were feeling.  A reward for a very difficult week for us all.  My mom wanted to treat us to a nice dinner, so we all jumped on the metro and headed downtown.  It was a much needed distraction and we had a blast with dozens of laughs.  As unfortunate as our circumstance can be, I’m so grateful to be getting this time in with my mom.  We haven’t spent this much time together since I was a kid and I’m loving it.  She’s such a special woman with so much love to give and I’m happy to be getting a massive dose of it right now.  Sasha and I would be so lost without her.

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Saturday was our 6 year wedding anniversary.  Unfortunately, I was incredibly fatigued all day and spent most of it in bed.  I’ve already requested a “do-over” for when I’m feeling better 🙂

One of the things I’m struggling with right now is the idea that these are our last few months together before having a baby and all energy is being spent on taking care of me.  I wish I had more ability to be doing fun things together without being tired all the time.  I wish the burden of medical bills wasn’t keeping us from taking some last minute adventures or romantic dinners.  I do find myself slipping into a bit of self-pity when I see others living in such ease or complaining about the mundane. I get overwhelmed sometimes by the visceral desire “to be normal”, but it quickly passes.  These are the moments that require more internal strength and perspective changing.  I work on it constantly and it is a daily challenge.

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Ohhhhh, but all those limiting thoughts quickly zip out the window as soon as I feel a swift kick in my belly or catch a glimpse of my growing baby in the mirror.  Baby Joaquin is a major source of strength.  He fuels me daily to fill myself up with emotional and nutritional love.  I thank him constantly for reminding me of what a gift this precious life is no matter what I’m going through and I thank God all day “for this beautiful life”.

Thank you for checking in.  Thank you for your prayers, love, and light.

Love,

Vivian