Induction day. Yesterday was chemo induction day. I met Doctor B, then met Dr. Pat (PhD nurse) then 2 chemo nurses, then was offered services from chemo pharmasists, psychologist, and even an Oncology Art day for Allie. We left with papers, flyers, booklets and even a catalog for head scarves. Dr. Berenberg's office was covered in hand made drawings and he had a glass bowl with fish in it. Kind of homey. Then the chemo room had handprints on the walls of all the patients who have had to sit in those chairs. The lead nurse in there took her time explaining everything even though we hadn't officially signed up with them yet. She gave us her 24 hour on call number. I didnt really expect all that. I guess I thought it would be more solemn and private but it was busy with people constantly coming in and out. I won't lie, it was heavy being in that room. It became pretty real. I don't know what God has in store for me in those chairs but stay tuned...His plan is always the best.
What I Know God is good Chemo will be 4 treatments every 21 days Waiting in AC is nice #humidhothawaii What I don't know When I start Chemo, but it will be as early as next week Why Daniel was crying about his banana this morning #lethimpeelit What made today normal I was blessed at MOMtime (church bible study) as always I love you mamas! Praise Feels like we found a chemo family yesterday at the army hospital Prayer Requests Prayer against fears of chemo side effects, and then prayers for little to no side effects/complications from chemo Prayers against illness and sickness Prayers for Allie, as the visual part of my sickness will soon be obvious Allie Allie: What are eyebrows for? Me: Ummm...! I don't really know... Allie: Can you look that up on Google? Shout out Shara and Juli for child care and dinner this week Advocacy Corner So one of the disappointments with my diagnosis was that Mike and I have always wanted to adopt a child. Obviously this has been put on hold. However, I am on a mailing list with an international adoption agency. I get emails with names and faces of children needing forever homes. So I am going to advocate for them here on my blog. Today's little boy is 9 years old and suffers from Hemophilia (blood disorder). Without medicine, the life expectancy is 22 years old. If your family is still growing or you are a single woman please pray about the role adoption could play in your life. Our small group has/had current adoptive and foster parents. The need for loving parents is very real, whether in the US or abroad. Please comment or email us about adopting or fostering children, we'd love to connect you to the right people. Aloha Thank you all for your continued support. We wouldn't be the same without it. Much aloha~Nikki
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Mike here, I stole this one from mum.... Today she mentioned that in her mind she likened life to an orchestra. Our roles vary as we have each been given different instruments. Some are given the prestigious position of 1st chair violinist, others are pounding away on the percussion instruments. Regardless of our role, their can only be one conductor, and sometimes that is hard for us to swallow. As we start up again with looking at the next treatment options, Nikki and I realize that our role in life, in this trial, is not orchestrate the next moves, but follow the lead of our heavenly father, follow his timing, and watch for his cues. Today we saw how wonderfully he is orchestrating our care, we visited the Army hospital (Tripler) and were blown away. Not only did the oncologist concur with the recommended treatment from our other doctor, but the entire staff overwhelmed us with their passion and sincere care for Nikki's well being. The doctor is extremely knowleadgable and consistently travels around the country to stay in tune with the latest practices, the head nurse took time from her busy day to sit with us and explain how everything worked- even making sure we knew how to dial her pager (what's a Pager?), and they have support staff and programs in place for every step of the treatment, even an event for Allie. Just when we wondered where exactly this musical piece is going, our Lord, The Great Conductor, allows us to sample the sweet melody of his plan. Won't you make sure you have your instrument ready when he calls on you?
What I Know God is good We have a follow up with our surgeon Tuesday @ 2pm - basic followup from the surgery, just to make sure everything is tracking We can start Chemo at Tripler as early as Wednesday!! (Although we will probably take a little time before making our decision) Chemo is fa 12 week process (1 IV treatment every 3 weeks) Radiation is a 6 week process ( 30 total treatments) What I don't know When I start Chemo although it will be shortly--- we are taking a few days to pray and then will make a decision on which medical provider Where Allie gets all her energy, I was never this crazy Why the Tripler chemo staff is so friendly- Nikki got three hugs today! What made today normal Sitting in traffic for 1 hour to go 15 miles due to a closed freeway #thank_you_ Hawaii 5-0_film_crew A baby gecko literally just landed on my shoulder, must be free fall qualified. Praise Recommendations from both Doctors lined up Great support from family and friends Prayer Requests Clear direction on deciding where to have treatment Shout out Suzanna- for sending Nikki a thoughtful gift with equally thoughtful card Merideth for also sending a thoughtful gift Laci Brown for an amazing meal Aloha Thank you all for your continued support, make sure you share this blog with someone that needs encouragement. Aloha, Mike Alas, Spring Break had to come to an end. Today we met with Dr. Y about my results from the chemo test. Dr. Peterson and Dr. Y share an office and so we were put in exam room #3. Of all the exam rooms, "that room" brings up a lot for us. That was the room I first met Dr. Peterson and got my official diagnosis. That room is where we found out Mike didn't get his promotion. That room, today is where I found out I will need chemotherapy. Our world has been quite shaken in that little space, lots of waiting, tears of sadness, fear and anger. But praise God we don't have to stay in that room. God knocks on the door and tells us to come with HIM, and turns the pain into miracles. We (and you) prayed for a clear answer today, and that is what we got. My score was a strong yes for Chemo, so when the doctor told us we were almost grateful. Thank you for your prayers. If you are in 'that room' in your own life, ask God to knock on the door and when He does, GO with him. You won't regret it.
What I Know God is good We have an appt Monday at 9am for a second opinion We have a follow up with our surgeon Tuesday @ 2pm Chemo is first then radiation Taking Daniel to Dr. appts is kind of fun #britishmascot Erin and I walked up the Koko Head Crater Trail on Wednesday. Everyone who has lived in HI just said, "You did what?!" Koko Head is a hike in which you climb up old railroad type tracks until you reach the top. It's pretty brutal. Now, that our time in Hawaii has an end date, my bucket list has started. Cross off Koko Head of the list. http://www.best-of-oahu.com/koko-crater-trail.html See pictures below. What I don't know When I start Chemo What made today normal Both kids were crying at 6am because they didn't like their breakfast options #eyeroll #somepeoplehavecanceryouknow Praise God gave a very clear answer about needing Chemo Erin was here for laughter, fun and 1,048 steps (one way) Prayer Requests Clear direction on deciding where to have treatment Shout out Andrea R for the goodie bag Aloha It's nice to be back writing again. Look for continued posts. Much aloha~Nikki Hi everyone, Mike here. Sorry it's been a while but we'll be ramping the blogs up again. We've been enjoying the no doctor visits for the past 10 days and taking a break from focusing on the situation. Well, to be honest, there has been a few other things going on that have been additional "growth events". I'll start with the lighter incident which left me hobbling for the past week. Ok, I wont go into much detail on that one suffice to say I had a manly outpatient surgery that turned frozen peas into my best friend- they gave me less than 24 hrs notice prior to the procedure! (If you really want to know more we can chat Offline). The larger bombshell came when I found out that I wasn't getting the job/promotion I had wanted-- it was extremely tough news and stung me right in the gut. "Really? Talk about hitting a man when he's already down?" Ultimately, I think a lot of the PAIN was due to my own ego being crushed and it took a lot prayer for me and Nikki not to be angered. After several days but after praying, talking, and, admittedly, sometimes yelling at the Lord I realized that there couldnt be a clearer sign that my path was being altered. You know, its easy to get angry when things dont go your way, but true GAINS happen when you face and deal with adversity. So where are we now? Back to what really matters, focusing on Nikki's treatment and prepping for the next steps.....HELLO!? The blessing in disguise is that I am able to completely focus on Nikki, have been kindly given the opportunity to stay in Hawaii another year to deal with all the follow ups, and will have the opportunity to start some service projects that would otherwise have been placed on hold. Nobody promised any easy life, but God has certainly promised to stand with us thru it all.
What I Know God is good We have oncologist appointments Friday and Monday to get differing opinions on the way ahead We have a follow up with our surgeon We will stay in Hawaii thru Summer 2018 Nikki's friend Erin is crazier than me (430 AM workouts!) What I don't know Whether Nikki needs chemo or not Why Allie NEVER stops moving....she literally hops, skips and jumps wherever she goes What made today normal Allie bursts open Daniel's door as he is barely waking up and shouts "Happy Monday!" Daniel gets into the car after playing in the car and shouts "Holy Cow!" Prayer Requests Definitive results from the chemo test Clear direction on deciding where to have treatment Shout out Tami S for the nice bracelet and Mickey for the wonderful blanket - Sisterhood! Weiss' for the wonderful bourbon chicken (dont hold back on that bourbon now!) Erin for stuffing her oversized bag with half the Trader Joe's store Aloha We're so blessed to have such a supportive network of family and friends. We feel each prayer, gift and though. Aloha, Mike and Nikki Aloha all! Sorry for the lack in writing these past few days. We are waiting for the results of a test to determine my next step forward. I will find out the results on 3/24. I don't have any appointments for almost two weeks. So we are calling this cancer spring break. I am healing very well from my surgery, able to drive and lift Daniel now. Getting stronger and soon ready for the next part of my journey.
What I Know God is good If you watch the documentary "Minimalism" you will clean out some area of your house the next day What I don't know Whether I need chemo or not Prayer Requests Definitive results from the chemo test Clear direction on deciding where to have treatment Shout out My mom leaves Friday and has been here 3 weeks. Thank you mom for all your help! Carmen at Arcadia Methodist for the matching family t-shirts! Aloha We will write again soon. Mike's turn is next. Much Aloha~Nikki Can't tell but this is post beach tantrum...Daniel is 2 everyone Spring Break adventures... Say Cheese!
Long time no blog. I was waiting until today to give you an update from both the radiology and medical oncologists. Both doctors were great. I will 100% be having radiation but it is still uncertain whether I will have chemo. Today's meeting about chemo led us to decide on a test to see if chemo will even work in my situation (they test the tissue from my tumor). So we will have to wait for those results. This week was full of education AKA "non-poking" appointments (insert gratefulness). I highlighted some of those things I learned in the comments below. I have attached a picture of my current collection of cards and flowers, thank you all!
Here's what I know God is good Radiation kills cancer cells at the site of the tumor (cancer cells cannot survive radiation) Chemo kills cancer cells anywhere else they may have traveled in your body Both are used to lower the rate of the cancer reocurring Chemo test will take 2 weeks for results Daniel refused to eat dinner until he could dip his pork in Marmite #shouldhavenamedhimWinston Here's what I don't know Whether chemo will work in my situation Why workers at Trader Joe's wear Hawaiian shirts when there are no Trader Joe's in Hawaii What you can do for me Eat better, turn off the TV and take a walk Allie (conversation about radiation) Allie: Did they get all the green bump out? Me: Today I went to the laser gun doctor. Allie: Woah, laser gun doctor? Me: Yea sometimes when you take out the green bump, pieces of it break off and hide. The doctor can zap it with a laser gun. Allie: Wow! Can you take a picture of the gun for me?! Praises Great doctors for both therapies 2 rainbows today Both radiation and chemo are less severe and shorter in duration because the cancer didn't spread to my lymph nodes Prayer Requests Clear results on whether chemo will work for me or not Continued healing and rest Shout Out Sheila for dinner Keiko and kids for care package Mike for fixing my steam mop Mom for cooking, cleaning and dealing with Daniel going limp for diaper changes #bigboypottytime Aloha We will update as we get any new information to share over the next few weeks. Much aloha ~Nikki Mike here, must be Monday......With the "green bump" out and positive report from the doctor, we are officially moving onto the next phase of treatment. You'd think we'd be overjoyed after getting this news, but to be honest, our thoughts quickly focused on the challenges of the next phase rather than to embrace feelings of thankfulness for such a remarkably smooth surgery and recovery process. The Israelites were the same way, no more than 3 days after moving on from the Red Sea (you know, when God parted the ocean and allowed them to walk on dry land) they began to worry about food and water. Isnt that just like us humans? Its very easy to forget all the blessings we've received and too worry (if not whine) when new obstacles present themselves. Today's visit with the radiology oncologist was God's gentle reminder that He not only got us thru the "Red Sea" but also has a plan to get us out of the "desert". Such a great visit with an extremely competent and equally caring doctor. She gave us a thorough education on radiation therapy, answered all of our questions, and made us feel like we were her priority for the 45 minutes we sat in her office. We learned that Radiation will follow chemotherapy, will involve 30 treatments (about 30 min visits) over the course of 6 weeks, and that the main side affect will be fatigue. While it sounds rather long, we actually feel very good about this part of the treatment. More importantly, we fell pretty good about Gods sovereignty thru this whole ordeal.
Here's what I know God is good Radiation will be the final portion of the overall treatment (30 visits--- Mon-Fri for 6 weeks) Visit with oncologist on Wednesday to discuss chemotherapy It still hurts when I make Nikki laugh too hard....but I do it anyway Here's what I don't know If Chemotherapy is necessary and what it would entail Why Daniel is always hungry but never knows what he wants to eat What you can do for me 1. Stop worrying about tomorrow, it'll be fine. 2. Start a list of everything you are thankful for and all your blessings....it will help you with task #1 Praises Great doctor for Radiation Therapy Prayer Requests The right medical/chemotherapy oncologist Not allow us to forget how far he has taken us in this trial Shout Out Work for sending some nice flowers Kelly P for such a wonderful dinner Grammy for her continued support with Allie, Daniel and the home logistics Aloha We can never say enough about how thankful we are for your love, support and prayers. Not paying it lip service, it has been nothing short of amazing. Mike and Nikki You know what they say..."You're water bottles start to look like you after a while." Daniel should be voted "least likely to be born in Hawaii" except he's the only one actually born here... Our laundry tester
Thank you all for your continued prayers this week. My recovery is going well. I am sleepy and tired but not in a lot of pain. We saw Dr. Peterson today and got a good report following the surgery. She removed all tissue surrounding the tumor which means that no more surgery is required. The size is small, and because the lymph nodes were negative then Stage 1 is confirmed. Praise God. I am grateful for all of this. All of the appointments and research the last weeks have led up to surgery and now we will start a different phase. New doctors, treatments etc. For now I am trying to rest and enjoy my naps and showers (the latter being a luxury this week). After my nap today it was raining while sunny...you know what that means. Alas, no rainbow this time, I am still searching. God is still good.
Here's what I know God is good Surgery report from today was great news Taking naps in Hawaii sounds like you live in one of those nature audio cd's #cuetherain Here's what I don't know What types and or when treatments will begin, but possibly this month. How Spring Break is going to go next week full of rainy days #fortsandmovies Praises Stage 1 is confirmed after surgery (due to size and that it didn't spread). No more surgery is required Prayer Requests Continued healing and rest (I am tired this week) Prayers over our upcoming meetings with oncologists Monday and Wednesday next week. We are looking for wisdom in finding the right doctor to plan out the right treatment plan. What Makes Today Normal Park time after school, Daniel always spends 1/2 the time in the swing Shout Out Shara for the pot roast dinner and flowers Arcadia Methodist Hospital IC dept for the flowers Sharon K for the devotional Aloha Have a nice weekend~Much aloha~Nikki |
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