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My Cancer Came back.. or did it?
WHEW! it’s been a hot minute since I’ve written a new blog post! More often I’m sharing snippets of my personal life on Instagram stories, or sharing some details in a newsletter, but this recent struggle REALLY knocked me out and for those of you interested in the details, I wanted to share what’s been going on the past week…
I went in for routine scan…
On July 29th, I went in for my regular CT scan. This was a routine, 2 year cancer screening to confirm that was still in remission from Hodgkin lymphoma. This scan was a little different in that it was full body, not just head and neck, so it required both IV contrast as well as oral contrast. (yuck!) I was thankful that they were both iodine based since I knew I react fine to that. (heads up if it’s iodine contrast it just tastes like water, woohoo!)
As you can see from the picture below, the results looked GREAT! I initially had 2 swollen lymph nodes, 1 of which was deemed “active” on diagnosis in 2019. After treatment, both still stuck around, but the right “active” one was no longer active. Each scan has been needed to confirm that it’s not growing.
Every single scan I have had in 2 years showed that it has not only remained stable, it has SHRUNK.
The results looked great!
Based on these initial readings my right lymph was measuring 1.5cm x 1.2 cm which was significantly smaller than the previous measurements of 3.7cm x 1.4cm. GREAT NEWS!!!!
Unfortunately, we noticed a discrepancy. In the summary of findings the radiologist said that one part trunk while the other grew… but wait. This didn’t match the actual measurements!!! So we decided to wait on the doctor but hope we were reading this correctly and that there was nothing to worry about.
I met with my oncologist August 6th. We sat down, and she seemed really happy with the results. The bloodwork that had come in looked good (we were waiting on some of it still) and the scan showed improvement. All is good!
But then we brought up the discrepancy…..she said she would confirm with radiology but she was sure it was just a typo.
And then things got scary...
First, I got a follow up call that the rest of the bloodwork came in and 2 markers were significantly out of range. So we scheduled a retest to confirm a week later.
Then on Tuesday Aug 10th, I got a voicemail from the oncology staff staying, “There WAS an error with your PET. The measurement read 15 (millimeters) but it was supposed to read 50 (millimeters)”.
Just to keep things all clear with the same measurements, this went from thinking it was 1.5cm to telling me it was 5.0 cm. This is a major difference and would mean that instead of shrinking, my tumor GREW and grew significantly.
The voicemail went on to say that I needed a follow up PET to know more. When I started listening I thought, “yes of course there was an error”, and then she continued and time slowed down. My jaw dropped. She’s saying the cancer is back….
I had to go in for a PET
The difference between a CT and a PET is that when you get a PET you get injected with radioactive sugar so that if the cancer is active it gobbles up the sugar and the radioactive materials bonded with the sugar light up on the PET. So a CT will show you lumps and bumps and the PET will tell you if it’s cancerous. I was essentially going into this assuming my tumor had grown, and what other reason could there possibly be except that the cancer was back?!
The problem, is that each scan submits you to radiation, and PETs more so because of the tracer that gets injected in your body. So these scans are not taken lightly, they are meant to be spaced apart, and there are only so many you are supposed to get in a year or a lifetime. As radiation is cumulative, it puts you at risk for secondary cancers…
I went to MyChart to take a look and realized that when my oncologist reached out to radiology, they did make an addendum. The frustrating part was that the addendum was made on Monday morning and the call I received was late Tuesday - leaving me no time to take action but lots of time to fret.
The trauma response began to hit me hard
Tuesday night was filled with many tears as I realized my cancer may be back. It was extremely traumatic as I tried to come to terms with the fact that I had just been told the week before that I was actually 2 years FREE of cancer.
I couldn’t sleep. I managed to sleep for about 2 hours, and then lay away until about 5am at which point I was able to get about 2 more hours of sleep.
Thankfully the PET was scheduled quickly and I was booked for Friday (the 13th no less!). Wednesday and Thursday were filled with research, prayers, worry, friends, hugs, more research, terribly morbid thoughts about how I wanted to approach this and what if I was dying….the PTSD with a recurrence scare is REAL!
I had a wonderful friend, who happens to be a nurse at Kettering, meet me and go in with me to my appointment (since I wasn’t allowed to bring family). SO many people were praying during the 2 hours of the PET that even though I felt really emotional driving to the appointment, I felt calm and peaceful while there.
Some other wonderful friends met me after and we grabbed some food since I had to fast all day for the appointment!
I needed to PLAN
Saturday and Sunday were also filled with research, planning, crying, list making and facing the reality that if my tumor really grew, it most likely meant the cancer was back. So before I got the official news, I wanted to have some thoughts organized so we could take action right away.
Again, I was supported through thoughts, prayers, texts, messages, well wishes and more. I was overwhelmed with the outpouring of love and care.
The results were IN
The weekend came and went, filled with good things like my Dads birthday dinner and a church concert. Sunday night I noticed a message from MyChart. The PET results were in. My heart sank. I was in the car with Patrick and he almost started crying before we even opened it. We were convinced it would be bad news. PET reports are a little more difficult to read than CT (at leas I think so) but one really important marker you look for is the Deauville score. 1-2 is cancer free 5 is active cancer. I saw a 2 on this report. After the week we had had I was too nervous to celebrate before hearing it directly from my oncologist.
Monday morning I received the call from a nurse, “Kylene, the PET results are in and it shows ZERO cancer. You’re good to go! We will continue with our normal monitoring but there is nothing else you need to do”
It was a MIRACLE
I barely knew what to do with myself. PRAISE GOD!!!!!!
Over the past week I struggled with my faith. I said not nice things to Jesus (my chiropractor told me “He can handle it”) and indeed He can. What many of you don’t know, and what I cannot fully share with you yet, is that the past 6 months have been trauma filled for me for other reasons. There has been a lot going on behind the scenes that has been extraordinarily difficult to process and work through and I have been in therapy since Feb because of it. So when all of this came up, I deeply felt that I could not handle both things at the same time and I was saying “WHY ME” to God. “Haven’t you given me ENOUGH already?!” for much of 2021 I have been wondering - WHY ME?????
But here is the truth. God WILL give you more than you feel you can handle. He will do that a LOT. And I don’t KNOW why He chose to gift me with all of these painful painful things in my life. But He did. And through the struggles I chose to trust Him regardless of the outcome. And I may NEVER know the purpose but I once again grew through this process. It brought things to the surface that I’m passionate about, that I want to accomplish, etc….
Ultimately, I believe that sometimes these things happen in order for God to get the glory in one way or another. When I shared a brief version of these events on FB the comment section gave me chills because of how many people I saw praising God and thanking Jesus for His love and the outcome.
Concerned about the process, I reached out to my doctor to clarify what happened… she did indeed look at both scans and saw what the radiologist saw.
Was this a miraculous remission?
Was it a fluke?
Was it an error?
All I know is that it’s a MIRACLE. And I’m THANKFUL to be cancer free for 2 years and going strong.
“Now all glory to God, who is able, through his mighty power at work
within us, to accomplish infinitely more than we might ask or think.”
10 things not to do or say to a person with cancer
Hey hey Diva friends!
In my last post, I shared 22 ways to support a cancer patient and today I’m going to share….what NOT to do! Many of these are things that people will offer or say from a sincere and kind place in their heart…but please…..just don’t.
Read the list below and say something like this instead! ;)
Click the picture to buy this or other cancer empathy cards!
Things not to say (or do)
“Your hair will grow back!” - we know. That doesn’t make it less traumatizing!
“This is all happening for a reason” - Again, we know. But maybe we don’t. And until we KNOW the reason or can glean some life lessons from it…this comment hurts.
“You’re so lucky! This one is treatable!” - Just because Hodgkin’s is a “curable” cancer doesn’t mean the treatment is less toxic, less painful or less difficult.
Don’t offer them an MLM product or magic solution that only you must know about. (caveat here: there are some valid alternative therapies and nutritional supplements and approaches that can significantly help a cancer patient. But please don’t reach out to a stranger offering them an MLM product that they purchase from you. Close friends and family are the only ones that this is an appropriate offering from and even then there is an appropriate way to offer it.)
Don’t hook them up with your friend so-and-so who had the same kind of cancer. Unless you’ve already asked if that is something they would appreciate. (Everyone wants to help and they may already have connected with 5 other people!)
Don’t say this will bring them closer in their walk with God, or that cancer is a learning opportunity. It will, and it. an be, but depending on where they are emotionally this can come across as very insensitive.
Don’t ask them why they chose the treatment they did.
“You don’t look sick” - gee thanks. I look amazing while I feel like poop!
“This is just part of your journey” - not helpful.
Don’t share a 10 minute story about your cousin who had the same cancer and they are just great now! We know you want to be encouraging, but when we are in the middle of processing a diagnosis and thinking about what to do, how to stay healthy, and what the next few months will look like…hearing random stories of people we have never met who may have had a different staging, be a different age, or sex, or even a completely different cancer….can be frustrating. I’ll be honest - our brains shut down for the first few months simply because we are in shock!
And there you have it! 10 things that would be really easy to say in the NICEST of ways but….don’t really sound good to someone facing the scariest part of their life so far!! Everyone’s journey is different, and sometimes encouraging stories can be encouraging…but they can also be really annoying because the person you are telling this to, knows that their story is unique and they DON’T know the outcome yet.
Try to back off of advice and just let them know it’s ok to feel however they feel. Scared, angry, sad, nervous….and you are there for them no matter what! They will really appreciate you all the more :)
Need extra support and encouragement? Join my free FB group
“Healthy Through Hodgkins” where I share integrative approached, detox tips, immune boosting ideas and more!
God is good all the time. All the time, God is good.
We hear this phrase often, but do we really believe it? Over the past 7 months, it would be easy for me to become depressed, discouraged, angry, frustrated and so much more. I mean, who dedicates their life to getting healthy and helping others stay healthy and then gets cancer? Doesn’t seem fair does it…
But because of my faith, I knew from the start that:
There was a plan
Whether I enjoyed the process or not, there was a purpose and
I would come out strong in the end andlearn some yet unknown lessons that needed to be learned
And sure enough, here I am, at the end of this journey (and the beginning of a new one) having fulfilled each of those things.
Plan
Not surprisingly, from day 1, I saw that God had been planning this journey for several years.
I discovered my tumor had been there for 2 years
I discovered later that cancer develops (like autoimmune diseases, another form of immune system dysregulation) over 7-10 years
I knew that had I not gotten sick in 2015, I wouldn’t have become an FDN
Had I not become and FDN, I wouldn’t have gotten to deep into healing, and already put in several years of work
Had I not put in the work, this journey may have been much more difficult for me
Had I not become an FDN and really invested in myself and my business I wouldn’t have gone to Mindshare (a networking summit with some of the top functional medicine docs around the country)
Had I not gone to Mindshare, I wouldn’t have had access to any of the experts I used to guide me through this process (detox expert, emotional healing expert, integrative naturopath specializing in cancer)
Had I not had access to these people I may have experiences loads more symptoms and not recovered as quickly in between treatments. I am walking away with no long term effects on my heart, lungs, or nerves and during the process I never experienced severe constipation, or pain of any kind. The most regular symptoms for me were fatigue, nausea and some acid reflux/discomfort from the epithelial lining being so raw from this process. I didn’t even lose all my hair ( I really think it stopped when I started taking beef liver again!) I had some many people praying for me across the country - I know that God protected me in many ways throughout this process.
So…..You see…..from the beginning I knew there was a plan. God knew that this was part of my journey and he set me up to navigate it as successfully as I possibly could. He blinded my eyes to the tumor ( which I could see in pictures stating 2 years prior) until it was the right time and I knew the right people.
But for whatever reason….this was still something He wanted me to experience.
Purpose
I knew there was some purpose to this. Maybe it was to solidify my stance that there is benefit to both conventional and natural medicines….maybe it was to strengthen my faith….maybe it was to help me empathize with clients and understand the body better….
Whatever the reason, I knew there was a purpose. And while I have learned MANY lessons, and had many A HA! moments, I may learn the ultimate purpose much later….or never at all….
Discovery
The first 3 months were the hardest. My body was shocked with this new treatment, I didn’t know what to expect, and anytime my white blood cells tanked it scared me. Everything was so new. The second treatment was the hardest as I ended up with an infection and an overnight hospital stay. This effectively eliminated my recovery period between treatments and so I wasn’t as strong going into the 3rd. But then around this time, I decided I really needed to continue living my life. I couldn’t just STOP living and so as I felt well, I did things that made me happy like singing and being around people again.
And throughout this last half of treatment I had revelation upon revelation about the kind of person I want to be, the kind of life I want to live, how I want to relate to other people and even how I want to run my business.
This isn’t to diminish the pain, fear, and uncertainty of this process. It’s not fun, and treatment weekends are the worst. Over the next 3 days I’ll spend most of my time in bed, popping nausea pills, sleeping, and forcing myself to drink water that to me tastes disgusting just to avoid dehydration which makes EVERYTHING worse.
But I simply don’t know how I would have navigated this without my faith. Without knowing that God had a plan, I wouldn’t have been looking for it. Without assuming there was a purpose, I wouldn’t have been able to keep my mentality positive and hopeful. Without knowing that there were lessons to be learned, I wouldn’t have be open to receiving all the downloads I was being divinely sent.
This was something I was meant to go through. I’m thankful that I can see the light at the end of the tunnel, I praise God for knowing what I needed, and I can’t wait to implement my new life goals. Some of the best things in life come from the most painful experiences. I hope I never have to go through this again, but the battle was worth the win.
10 ways to combat nausea during chemotherapy
Hey Hey Diva friends!!
Between chemo, antibiotics, and changes in my diet this process has been a nightmare for someone always focused on gut health and supporting my microbiome!!!
BUT I chose this path and know that it’s only temporary. I also know that I have all the tools to build my gut back up once I get through this….so meanwhile, I’m left with managing symptoms and by far, the biggest struggle for me has been nausea. Between myself, my doctor and my naturopath, I’ve discovered some tips that may help YOU or someone you love when experiencing this. Feel free to share it with a friend!
Something to understand about nausea is that everyone’s body, treatment and personal experience is different and some nausea is stronger than others. You may or may not actually feel like throwing up, you might just feel “off”. So this list ranges from homeopathic to prescription remedies, and from things to smell to things to ingest. Where I would normally advocate getting to the root cause of nausea so you don’t have to live on a prescription, when undergoing chemotherapy the treatment itself may BE the cause, and it’s certainly not something to mess around with.
In Chinese medicine they talk about yin and yang, hot and cold and that’s another great way of thinking about this as well. Some days you may have excess heat and so a “cold” remedy like peppermint may help but other days you may have excess cold and a “hot” remedy like ginger may sound better to you.
Listen to your body and when reading this list, some things may sound more appealing than others. Go with your gut!
Ginger Zevia. This is basically chemical and sugar free ginger ale! When you’re drinking something to combat nausea you want to make sure you’re not also drinking a bajillion calories, or other harmful chemicals that stress your body. This is a great option for mild to medium level nausea, but I would be careful if you have a lot of digestive complaints, acid reflux, or stomach pains as well because carbonation can be irritating in those cases. You can usually find this at your local grocery store and if they don’t carry it your local heath foods store.
Ginger Tea. This would be a warm, non-carbonated way to get some tummy settling ginger and an easy way to get some beneficial honey in as well! To me, warm drinks did NOT sound appealing, but if it sounds good to you this is a great option.
Peppermint Tea. Peppermint, along with ginger, has been used for centuries to combat nausea! Lesser known than ginger it can be just as effective.
Peppermint essential oil. I personally really liked this option. You can take a whiff of the bottle and keep it with you, use a diffuser in your room, or carry a hand diffuser with you like this one.
Peppermint gum or hard candies.
Preggie Pops. I haven’t personally tried these, but I heard that they are really helpful. My naturopath explained that nausea induced by chemotherapy hits the same parts of our brain as pregnancy nausea. These pops include helpful essential oils and if you are also experiencing funny tastes in your mouth from the treatment this may be a helpful option to distract your brain.
Gluten Free toast. I can never recommend regular bread ( do you even know me?!) but sometimes toast really does seem to help. I personally like the brand Eban’s Bakehouse and would add some grass-fed butter and honey on top! I liked using this honey for the added benefits of the bee pollen, propolis, and royal jelly!
Prescription nausea meds. To me, these are something to use as needed. By that I mean, I am more likely to use these the first 48 hours after chemo and when nausea is persistent or stronger. These come with their own side effects like constipation, headaches or fatigue, so I like to minimize my usage and incorporate as many other options as I can when they work.
Medical cannabis. No, I am not advocating that you go buy a joint off the street. It's critical to do this legally and keep your doctor informed! Some people find that this is by far the most effective nausea remedy they can use. I did find that it helps, but I also don’t love it. There are ways to vape it or get a tincture and since vaping really feels like smoking and well…YUCK, I prefer to use the tincture. Vaping can hit your system a bit faster, but the tincture works pretty quickly as well and has the added benefit of being able to titrate up 1 drop at a time until you find what dose works well for you.
Increase your protein. I know it can be hard the days immediately surrounding treatment because if you’re anything like me, my diet is anything but normal during that time (hello homemade jello, dairy free ice cream pops and gluten free toast 10x a day!). But as soon as you are able to get back to “regular” foods and meals, try to increase your protein. If eating a steak doesn’t sound good to you, simply adding a scoop of protein to your daily protein shake can be helpful too.
Overall, listen to your body!! It knows what it needs and does a pretty good job of communicating. So if you are craving a certain kind of food, go with it! At least during the really tough days. You can use the rest of the days to fill your meals up with nourishing fruits, veggies and gut healing foods!
I hope this was helpful - do you know someone struggling with their chemo treatment?
Feel free to share this post! Know of additional remedies? Please drop them below!
3 lessons cancer has taught me
Hey Hey Diva friends, it’s another beautiful day….
So much has been going on since my diagnosis Feb 8th and while I’m not done with my treatments yet, I’ve already learned so many things about myself, my life, my purpose, appreciation for what I have and more! So today I thought I would share a few of these thoughts with you.
1) Appreciate all you have
As soon as anything is taken from you you appreciate it more. Kids know this right? They don’t necessarily want to play with the toy, but they don’t want anyone ELSE playing with it either!
I have an AMAZING life. We have plenty of money, a nice house, a beautiful family, the sweetest dog, careers that we believe in, great and reliable cars, and super amazing friends and family. Sounds like the dream right?
But just like everyone else, before cancer I picked myself apart. I was definitely HAPPY and quite appreciative of my life, but for me specifically my insecurity and stress points were my body and my work. I loved my work, but I also put a ton of pressure on myself. I loved my body but…..did I really? I was CONSTANTLY tearing it apart and wanting to be stronger, thinner, prettier…..perfect.
And then cancer came a long. And she took my control. She took my strength. She took my hair. She took my comfort.
After the diagnosis I knew what was coming and the months leading up to treatment there were many times I stood in front of the mirror as I got ready in the morning and simply appreciated what I knew would be taken away.
Suddenly, my hair was GORGEOUS on it’s worst day - my body was perfect just the way it was. I was appreciative for everything I could do….and I learned that we shouldn't wait until something dramatic and scary happens in our lives to really truly appreciate everything we have. And here’s the real kicker, it’s not just about appreciating everything we have but being CONTENT with it.
I was alway happy, positive, and thankful….but was a I content?
2) Let people help you
This one can be harder for some than others, but I think it’s hard for everyone at some level. We all want to be independent. Asking for help is never easy, and saying “yes” when you think you don’t need the help can be difficult.
“Hey Kylene, I’d like to support you - can I bring you lunch on Tuesday?” Part of me wants to say “no need, I can handle it but thanks!” because I don’t want to have anyone go out of their way to sere me.
But the other part of me realizes that not only would that be helpful and take something off my plate, but people WANT to contribute. They WANT to participate and help in any way they can. I would only offer to someone what I hoped they would accept.
Sometimes that means someone mails you a card or a gift. Sometimes that means people pray. Sometimes people make you food or buy some and drop it off…..
If someone has indicated that they want to support you in whatever way is comfortable for them just say yes.
I have been surrounded by kindness the past few months and it’s really made me think….would I do this for someone else? Would I go out of my way to help them somehow??? Which brings me to my next lesson…
3) Be that person
When I was going through my divorce, I learned very quickly how NOT to behave to anyone going through divorce. I was judged, mistreated and abandoned by many. I saw exactly what NOT to do and learned how to love others better by NOT being loved myself.
Through this cancer journey I’ve seen the opposite - people coming out of the woodwork to pray for and support me. People that don’t even know me have me on prayer lists and send me things like project chemo crochet blankets. People that don’t. even. know. me.
So I want to BE THAT PERSON. You know, the person that was the surprise. The person that goes out of my way to think of and pray for others. The person that hears of a need and tries to assist. The person that always encourages help out.
My divorce really shaped me in a positive way and I’ve held onto those changes in my mindset since. I know that this cancer journey will be another major shift in my worldview and thinking and I can’t wait to get to the other side :)
Asking "why me?" and experiencing unconditional love...
2 days ago, I went to the ER. I had been in bed almost the entire afternoon and while experiencing severe abdominal pains I had thrown up. After that the pain became more manageable….if I laid in bed and didn’t really move :)
My husband, who as usual, was being saintly and had gone to help a nearby city with tornado relief work, came home late afternoon, took my temperature and called the on call oncologist after the temp read 101.5. The doc said to take me to the ER and that started our super fun 20 hours in the hospital.
You can see a short summary of what went down while we were there here:
Throughout this cancer journey I’ve had a lot of wonderings. Just like anyone might, I’ve wondered why (or how) this could possibly be happening to me. I completely changed my nutrition in 2012 - I completely changed my whole lifestyle to focus on health and wellness after 2016. I worked on healing my gut and balancing my hormones (really effectively) since 2017….. I saw drastic improvements in many facets of my life and I’ve helped dozens of clients heal their bodies as well…..and then I got diagnosed with cancer. What the heck?
Firstly, I’m not going to answer that question, because I can’t. Secondly, after a lot of thought (and finding pictures from 2 years ago of my single tumor that has never spread) I didn’t feel like all the work I’d put in was useless. I know that I did what I could when I could with what I knew at the time and that it surely strengthened my body.
Even so…some people WAY less healthy go through chemo and still work full time, function as parents and live seemingly normal lives while others (like me) get knocked out, sleep a lot, and get side effects or complications….
With my history and dedication to health building and disease prevention for the past 3-5 years, I was convinced I would be the patient with no complications and the fewest side effects….I was going to breeze through this cancer thing with 6 treatment in 3 months and then say goodbye to it forever!
But then my port suture wanted to get infected and I had to go on an antibiotic….then this past weekend happened and I had to be admitted to the hospital…..
And all these questions of:
“Why can’t my body handle this? I went in so strong!”
“This is really taking a toll on me, did I make the right decision choosing conventional medicine for this treatment?”
“I have to be on another antibiotic, what will people think about that when I usually avoid them like the plague? How do I feel about it?”
…come in.
In addition to the complications, there is the regular and expected trauma of my hair falling out more and more every day… so what was once a semi- passable GI-JANE look is now an uneven, scraggle of fuzz that is embarrassing to leave uncovered. #hellobaseballcaps
“Why me? Why this reaction? Why now?”
I have no idea. But I don’t dwell too much on those questions. Because the answer doesn’t matter. It doesn’t matter WHY God chose me, it just matters that He did. It doesn’t matter that I don’t understand it right now, it just matters that I will. It doesn’t matter that I’m not sure what I’m learning, it just matters that I will learn from this.
Last night, after spending the previous evening in hospital beds and being woken up every hour almost on the dot for blood draws, shots, IVs etc….Patrick and I were exhausted. Happily at home, in our own beds, and after several hours of napping for each of us, we spontaneously started cuddling and kissing and it felt super magical and connected….until I remembered what I was going through, what was happening to my body, and what I currently look like. I started crying and tear up even as I write this. Because I realized that Patrick was loving me and behaving towards me as if nothing had changed. As if I was still the most beautiful woman in the world to him and that it made no difference if I have hair or not. It was so overwhelming to be so vulnerable in that moment and just accept that he really does love me no matter what.
A lot of people talk more about their faith than I do. A lot of people pray more, do devotions more frequently or use spiritual language more. So a lot of times I feel “less spiritual than” when I don’t sprinkle God into every video or post I make ….but all I can tell you is this. My faith is a deep and intricate part of my very being and whenever I share it I want it to be completely sincere. Whether I pray about every decision prior to making it or not, I make the decisions I do based on what I believe. My Christian belief system completely affects the glasses I see the world through and how I react to situations mentally and emotionally every single day. It affects how I treat people, how I verbally respond when I’m frustrated about something, and how I think about these “why me’s”.
I don’t often get that “warm fuzzy” feeling or any sort of spiritual “woosh” when I pray or go to church. And here’s the thing. The way Patrick loves me, as overwhelming as it felt last night, is how God loves me (and you) every single day. He doesn’t care if you’re overweight, bald, sick, impatient, or flat out ugly inside or out. He loves you unconditionally and honestly, he doesn’t expect a single thing back from you except a desire to be in a relationship with Him.
While I was crying last night and Patrick was holding me tightly in his arms, I said “I feel like you love me so much and I don’t do enough for you in return.” And he just replied “You make me happy and that’s enough.”
WOAH. Can’t get more Jesus-y than that. All God wants from us is to be in a relationship with Him. That makes Him happy and that’s enough.
Now the real question isn’t why me, or why now….it’s….WOW. Can I accept this? I don’t FEEL worthy….but he says I am. So I can wallow in this sense of self doubt and worthlessness….or I can simply accept the love I’m given. No strings attached.
Skipping the menopause shot
Hi friends!
Today I made a really hard decision. So hard in fact, I had a solid hour of crying back and forth while I was trying to make the choice.
What was such a big deal? Well, I was trying to decide if I wanted to get the hormone shot that puts me into menopause during chemotherapy. Ultimately, I chose not to and here’s why:
There are 2 main reasons to get the shot in the first place. 1) To potentially have a positive impact on your blood count by not having your cycle during chemotherapy and 2) to maybe offer some protection to your ovaries by shutting them down and therefore assuming they won’t suck up as much chemotherapy thereby protecting their functioning in the future.
That being said, I kept feeling this nagging “no” when I thought about getting the shot.
First, after my horrible experience with egg retrieval, I really wanted to give my body a break. The idea of getting another shot that messes with my hormones in a dramatic way did not resonate well with me.
Secondly, I still haven’t had my period since the fertility stuff. I was pumped full of so many hormones, that my uterine lining got really thick. I know my body, and I know my hormonal history. Before doing anything else manipulative to my hormones, I REALLY really want to shed that lining. The problem is, there is a window of time they really want to give the shot to you before chemo….my window is closing and I haven’t started my period yet.
Thirdly, ABVD doesn’t appear to be super damaging to your ovaries. Different chemotherapies have a lesser or stronger probability of damaging them and it doesn’t sound like ABVD is high risk in that area. Additionally, even if my ovaries ARE damaged I just harvest 21 mature eggs which is an insane amount of options should I choose to use the route later.
Fourthly, the Zoladex shot take a few weeks to sink in ( thus the reason they want that window) but chemotherapy will essentially put me into menopause anyway. After a few cycles the likelihood that I will skip my periods is high and I would rather just let my body do it’s thing and support it the best I can.
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And finally, some doctors recommend you wait 6 months after chemotherapy to have babies and some recommend up to FIVE YEARS. When I read that today I realized the likelihood of me wanting to actually get pregnant after this is low and I feel like I’ve really wasted pain and money going through this process. For those of you who are reading this thinking “oh you are so young, you have plenty of time!” technically, that is true. But my hubby is 15 years older than me and it’s a real consideration when I continue delaying the process by potentially YEARS.
I don’t know how I will feel when I’m done with all of this. Maybe I will be relieved that I have some fall back options and be happy that I went through the egg retrieval process. Maybe I will decide to finish the IVF process and have kids after all. Or maybe I will just be so thankful to be healthy again, and feel like I really want to give my body a break, enjoy my life with my family and get back to work…
All I know is this. I felt something in my gut telling me NO so strongly that I called to cancel today. I felt much better afterwards and that’s definitely something I need to hold on to throughout this process- my voice and intuition!
What about you? Have you or a friend chosen to do fertility treatments or lupron/zoladex shots before chemotherapy? Or did you choose to skip it altogether? What was your experience?
My [REAL] experience with fertility preservation
Hi all! It’s been a hot minute sine I’ve blogged but I realized recently that with all the changes in my life the past few months and all the physical ups and downs where I may or may not regularly feel capable of doing live videos, I felt like I needed to make a blogging comeback :)
Sharing my journey with you on social media is something I have chosen for several reasons. First and foremost, I sincerely hope that sharing my experience helps someone else that may be going through something similar in the future but also, it’s somewhat cathartic for me to document my journey and receive support from my awesome online community! So thank you!!!
Many of you already know that in February 2019 I was diagnosed with Stage 1A nodular sclerosis Hodgkins lymphoma. that means I have 1 small tumor in my neck. To hear more about my treatment choices and mental preparation you can listen to my recent podcast episode below
Why Fertility Preservation?
Since ABVD (the type of chemotherapy offered for Hodgkins patients) can damage not only your heart and your lugs, but also your ovaries, young women run the risk of going through treatment and coming out infertile. The risk is mild, especially since I am receiving only 1/2 the national standard of treatment since my cancer has NOT spread and I have no symptoms ( thank you Jesus!). But still, at my age, if I damaged my ovaries I wouldn’t have that much time to do anything about it.
When Patrick and I got together I was pretty firm on the , “I’ve never wanted to birth children, so I hope you’re ok with that” front. But after 7 years of soulmate-ness :D and 6 years of marriage, I was softening to the idea of having a mini us. In fact, we were beginning to discuss the reality of even “giving it a go” this year. Just before I got diagnosed….
So when we found out that treatment could ruin our chances, I chose to get fertility preservation treatment which is basically the first half of IVF where we stimulate my ovaries and then harvest and freeze my eggs for what I call my future maybe babies.
What was the process like?
Expensive, painful, and….dare I say it….not worth it? ouch. I know that a lot of women out there live and breathe for the possibility of having children, but I haven’t and honestly, had I known what all this would feel like BEFORE I signed up, I don’t know if I would have followed through. However, everyone’s body is different and many women have had better experiences that I….So what’s it like?
Week 1 and Week 2
The first 2 weeks were easy. In fact, as I took my estrogen tablets (not recommended outside of this supervised and intentional process btw) I felt pretty good! If you have followed my story, I generally have hormones on the low end of the range, so increasing my estrogen felt pretty good to me. The only side effect I experienced was mild nausea that usually went away with a piece of gluten free toast.
Week 3
Week 3 began the hormone shots - I used Gonal-F and Menopur which are luteinizing hormone and follicle stimulating hormone. Basically, the goal is to get your follicles as big as possible so that during the retrieval process you have harvested MATURE eggs that can then be used later. They will save all the eggs because they hope that as technology improves they may be able to mature the rest of the eggs some day as well.
ANYWAY!! normally, your body matures about ONE follicle and releases ONE egg/month during ovulation….my body was maturing 24 follicles, the largest of which were about .75-.8 inches!!!
As you can imagine, that meant that the ovaries began swelling. Even so, I wasn’t terribly uncomfortable during this phase. Every evening Patrick would give me two shots in my belly and sometimes they hurt and sometimes they didn’t, but it was never horrible and always went away fairly quickly.
During this week you also being the every other day blood draw and ultrasounds to monitor your your follicle growth and estrogen levels so they can adjust your doses as necessary.
Week 4
The beginning of this week or potentially the end of week 3 you start adjusting your shots. You begin taking a third shot that keeps your body from ovulating because HELLO, after 3 weeks of growing these follicles and thousands of dollars later, the last thing you want is to release all these suckers before harvest day!
Your ultrasounds and blood monitoring continue until they determine which day (out of a 3 day range) your harvest will be. Then, 36 hours prior to your surgery time, you take a “trigger” shot. My harvest time was 7:30am on a Friday morning so my trigger shot was 7:30pm Wednesday. The day in between, no shots!
Retrieval Day
Finally, it was retrieval day. I didn’t know what to expect and was a bit nervous. I had an oops the morning of surgery which almost threw the whole thing off. I drank water!!! I had only written down no FOOD from midnight on, but apparently it was no food OR water….this is because you can spit it up a bit when you are put under for the procedure…which, apparently I did a little. But since everything is time sensitive and I agreed to the risks we proceeded.
When I woke up, I was NOT happy. I was in so much PAIN!!!! Normally, you wake up from something like this you are all loopy, and happily hopped up on some legit pain meds….but no, I was hurting the moment I came to consciousness.
On the plus side, we retrieved 23 eggs, which as I’ve done my research, seems to be a HIGH amount. I’m sort of getting the impression that since I went through this process as a preservation thing and not since I was infertile to begin with, that I had a stronger “output” and my body participated more easily….
Unfortunately, I think because the output was so high, the pain was also….I mean think about this…I had 23-24 eggs growing and the smallest of the follicles may be around .5 inches… in ovaries that are NORMALLY the size of your thumb…..thats a lot of stretching! Then to have a hollow needle shoved up your hooha to retrieve them all….well, inflammation followed.
The recovery
Friday (April 12th) I was in excrutiating pain. The pain was transferring beyond my ovaries and into other parts of my body (called referred pain) like my back and I was convinced I was having kidney problems haha. Patrick ran to get the legit pain prescription and the first half of the day we were a bit behind the curve. I tried to take 2 and wait the full 4 hours, but then I ended up throwing up and in excruciating pain again before the next round sunk in and I fell back asleep. After that, I took smaller doses ( 1 tab instead of 2) but more frequently so that the pain medication stayed in my system. Once we figured that system out, I felt ok after about 2:30pm and the rest of the day was spent sleeping and watching Netflix.
I was told to expect a little bit of pain - like period pain the day of, and basically over the next 3 days start going back to normal. I think I had a stronger reaction than normal because day 1 was completely and utter misery. Day 2 and 3 were better only in the sense that the excruciating pain was gone and I didn’t have to live in bed.
Days 2-3 (Sat/Sun) there was extreme bloating all throughout my abdomen making it difficult to eat regular food ( am I hungry? and I not hungry? the pressure was messing everything up). In addition to the pressure and swelling in my abdomen, I had pain and aches all throughout my lower abdomen as well. Imagine wearing a belt of pain filled with rocks that shift around…that’s sort of what it felt like. Walking was doable, but also difficult. Getting up in to bed or folding forward in any way was uncomfortable. Going to the bathroom was a whole other story….squeezing your abdomen to urinate becomes an unpleasant experience and you will most likely become constipated because of all the hormones and pain medication so there’s an additional source of pressure and discomfort in the very area you don’t want it!
I would HIGHLY recommend getting ahead on water and a natural laxative like Senokot the day BEFORE surgery so you don’t get behind because those little things make a HUGE difference during recovery. Day 3 I even did a water enema in addition to the Senokot I had been using because I really needed that to be taken care of!!! Do this with caution however because you may still be highly inflamed and so monitor the amount of water you use….basically….don’t push it. Just use enough to get things flushed out and then maybe do it once or twice depending on how you are feeling.
Occasionally it’s also difficult to breath from all the swelling and pressure in your abdominal area so adjusting to take deep breathes and trying not to breath too far down into your diaphragm where all the inflammation is at, is a real consideration for a few days.
Day 4 - FINALLY I hit a turning points! I’m experience less bloating and the scale began to go down. I didn’t mention it earlier, but during the tail end of the hormone treatments and on through the egg retrieval process the scale began to creep up. It hit a high point a few days after the retrieval because of inflammation and water retention but for me, on day 4, it began to go back down…. yay! I’m hoping that means that the bloating, inflammation and the sale will continue to go down from here on out!
Today there is still bloating and a fanny pack of discomfort, but much more manageable than any of the days prior! I’m also back to eating normally since the past few days it was most gluten free bread or crackers bone broth, chocolate pudding etc… Yesterday (Sunday) we celebrated Keegans birthday and the birthday lunch was the most normal food/meal I had eaten all at once since the surgery.
Results
As I mentioned, they successfully retrieved 23 eggs but i’m unsure how many were mature. I believe that if I need to pursue the second half of this process in the future the worst is definitely behind me. Is it worth it? OY. Like I said, I don’t know. There’s nothing I can do about it now, but I certainly didn’t expect to be an invalid for 3-4 days post retrieval and experience the level of discomfort I have. Personally, it’s a little frustrating because I know that chemo will be it’s own process and may bring with it a whole new set of pain and side effects…so had I know this would be so painful - would I have chosen it? Not sure. But I did, and now we have a safety net which is a good thing.
I wanted to share this because when I was researching what to expect there aren't a lot of stories sharing the after care experience being as intense as it was for me. Perhaps I’m a special flower that just really experienced the max levels of pain and thats unusual, but if it’s NOT, and you choose to go this route, I want you to be fully prepared mentally!!! Because if this IS your dream, it’s only a few days and you can definitely do it :)
Top tips
I always like to share anything I can through my experiences to help you avoid mistakes I make and and/or use tools that I used that did help!! Here are some tips if YOU are considering going through this process.
1) Definitely eat a healthy diet, there was one week where I really craved more carbs and sugar but other than that I stuck to my usual nutrition! Focus on veggies water, and healthy fats to support your fertility process!
2) Are you on the fence about fertility treatment? there are lots of other things too try first including changing your diet and lifestyle! In fact, several of my personal clients have “accidentally” become pregnant after working together when previously it had been more difficult. Personally, had cancer not forced my hand, I wouldn’t have chosen this for myself. I spent several years working on my hormones and balancing them naturally! I even eliminated my PMS completely and regulated my cycled to 28 days! There are lots and lots and lots of books and resources out there so I would’t recommend IVF as your FIRST step…but sometimes it’s a necessary step so don’t let yourself feel guilty if it IS something you need to go through either!
3) Vitamins. Things like curcumin, fish oil, multi vitamin and protbiotics are beneficial almost always, but certainly when you are trying to keep your inflammation low and your digestion regular!! I was really happy that I didn’t experience a lot of discomfort BEFORE the procedure. They kept indicating that I would, but I didn’t!
4) Definitely over hydrate as soon as you begin to take the medicines. When I started taking the shots I didn’t realize you could get dehydrated and I got behind at first. Staying up on your water intake REALLY helps - be proactive!!!
5) Be aware of the constipation reality. It’s not helpful and it’s not fun. Consider starting the day before retrieval with a natural laxative and get as much water in you as possible prior to the surgery cut off/ fasting time!!
6) Regardless of how natural or healthy you are, do NOT shy away from the real pain meds if you need them. They exist for times like this and will help you get through the first 24-48 hours!!!!
7) Remember- you CAN do this, Your body is designed to do amazing things, and it will recover and heal, and you can always assist it in detoxing this process as well. Remember to build up a really great support team behind you - that makes the BIGGEST difference!!!
8) Speaking of support teams - get a family member or friend to make dinner the night of the surgery. You may be drinking liquids and downing bone broth, but it’s extra helpful for your family to have some extra food that you don’t have to stress about!!!
9) And finally, when you ARE taking lots of NSAIDS or pain RXs, consider taking some supplements to protect your tummy and gut lining, I, again, got a little behind on this day 1 and could start to tell that my tummy wasn’t happy about it. Since then I’ve been careful abbot taking GI Response which is a poster supplement you blend with water that contains L Glutamin which repairs your epithelial cells, and skipper elm, marshmallow root etc that help soothe and heal as well.