Thursday, January 25, 2018

My Love Hate Relationship with................

My current love-hate relationship will most likely take a lot of people aback when I share this struggle. I hate food right now. Diet and nutrition is such a big part of overall healing, and in the case of Cancer the emphasis is strong from all fronts. Should I be gluten free? The short answer here is yes, I should! Should I take on the anti-inflammation diet? Should I cut out all processed products even those GF products? Is the donut from DD’s really going to hurt me? Not to mention the DD’s latte with almond milk that although sounds healthy is full of sugar. Back in 2012 I totally revamped my diet and cut out all sugar from my diet. I was vocal and opinionated about it, especially at work where I always declined the cookies and desserts that would from time to time make their way into my line of vision. When I was diagnosed with Stage 4 I joked around work, “I should have eaten the F-ing cookies.” What was the point after all? Nutrition didn’t save me from getting cancer again now did it? But despite my struggle with what’s best to eat right now, I know it’s important to my healing and wellbeing. Because my weight currently is still considered low as I have not recovered from the initial diagnosis weight loss, protein is a big push for me right now. On top of the initial weight loss, I lost even more weight during brain radiation. I looked quite sick and thin for months. It’s been a slow process primarily due to the fact that I hate having such a focus on what I am eating right now. Sometimes nothing seems good or I just want to eat all the things I shouldn’t. Protein (shakes, animal, or plant based), green veggies, mashed potatoes, hummus………………………..love-hate!!! Nutrition is consuming my life from the time I wake up until after dinner time. What is a girl to do aside from taking it one day at a time and one meal/snack at a time!!!

Through this struggle I have been getting my smoothie on every few days when my stomach says “YES.” I am using the following ingredients in my smoothies these days with Origain protein drink as the main ingredient to add a protein bunch. 
  • Origain protein prepaid drink
  • Handful of fresh blueberries
  • 1/2 bananna
  • two handful of spinach packed tight


- Blend and Enjoy!   

Although the struggle is real I know I need to create a loving and nurturing relationship with food again in my life and I am working on it as I type this blog. I know it’s important to healing and that in every way it shapes how we go about our day.

In addition to the smoothie, my goal is to try a new recipe each week and try something new from the ever-growing stash of cookbooks I have around the house. This week was a really yummy detox soup that I found within my Oh She Glows cookbook. It included some awesome spices that make the flavor really great and it tasted yummy. I substituted out vegetable broth with a healthy dose of bone broth. Bone broth is known for some amazing health benefits. Give it a try next time you are making a soup that calls for a broth base. It’s known for its healing powers. Even if you just sip it straight from a nice warm cup like a tea it’s great! I have been drinking warm cups of bone broth a couple times a day. It’s actually not a bad little sipping snack during these long, cold winter days in Maryland. Full recipe here for the Oh She Glows - Detox Soup


 Substituted with bone broth instead of veggie for the added health and healing benefits

Garnish with squeeze of lemon & chopped kale


Wednesday, January 17, 2018

Snowy Day Update

I am up early on what is a beautiful snowy morning with 2 hour school delays. Oh wait, now it’s a snow day here in Maryland! With coffee in hand and a quiet, dark morning I find this post matches the mood of the day. New snowfalls and new beginnings. I have just come from what seems like my millionth overnight stay at Hopkins. So far I have not gone a month in a very long time without something popping up that requires more serious medical attention. We are hopeful that February will be a quiet month in terms of medical issues that arise.

This latest stay was the result of more extreme headaches followed by nausea and vomiting. Similar to last time, but for a different reason this time around. The updated CT and MRI scans of the brain revealed what appeared to be a spinal fluid leak on the brain. It was treated with steroids, caffeine pills, and pain meds. They weighed the risk and benefits of doing a test that would confirm if there was leak and then would put in a blood patch to clot over the area. It was decided it was too much of a risk at this point to do the procedure, as it would introduce an additional spinal puncture, further risking additional leaks or complications. This latest stay was 5 days in the Weinberg Cancer Center at Johns Hopkins. It was not how we wanted to spend our long holiday weekend that's for sure. I was pretty disappointed in starting the steroid again. I had just weaned off of it at the end of December, which meant I could resume mistletoe injections and/or infusions. Because there are some complications to using these two meds together, mistletoe goes to the back burner once again.

In other news we are starting an additional chemo called Lynparza (olaparib), which is a pill form of chemo. We will do the Lynparza along with the IV Carboplatin. Because I am still having what appears to be continued progression, my doctor didn't want to keep this new drug on the back burner. We are throwing everything we can at it to get some stabilization of the disease.

I am so excited to be back home resting. Although with a snow day and having Charlotte home and cooped up it’s not going to be overly restful. But it's good to spend some time together since I had been away from her for so long. It seems that we are consistently being admitted to Hopkins for tests, treatments, and/or interventions.

Because the last few months have been so hard on us we are planning a well-deserved family vacation the beginning of February. Prayers this trip is as amazing as it sounds and that I will have the energy and stamina to keep up with everyone. Pray more importantly that I remain un-hospitalized leading up until the trip and for the duration. I am still having trouble with stairs from all the brain radiation. I am working on conquering them so that I can have the leg strength I need for our next adventure. We are all looking forward to a warm, relaxing, and enjoyable vacation to Hawaii. I for one am beyond excited to have something fun to look forward to and some much needed time with the family.

I have started more meditation and mindfulness work on myself. It’s been helpful to learn to slow the breath and get into a relaxing and meditative state. I came across a book called Being Well (Even When You Are Sick) that I really love. It was great for someone who is dealing with a life threatening diagnosis. It is simply written and easy to follow with great meditations you can download. I have read it twice over the last couple of months. The author, Elana Rosenbaum, also wrote a book called Here for Now: Living Well with Cancer Through Mindfulness. It was not as good as the first book, but another great resource for meditation. I highly recommend them if you are going through something like this and are looking to channel your mindfulness muscles. We all can use some help in getting our mind to quiet down and focus on the breath.

Happy snow day here in Maryland and I hope you are all safe and warm.
Love and Light - Erin    


Thursday, December 28, 2017

It’s been a rough couple of months, but what an amazing Christmas!

Oh boy, it’s hard to know where to start with this post, so much has happened since November 1st. I started off the month with an amazing girls trip to the Outer Banks. We had one day that was so warm and sunny we sat on the beach in shorts and tanks. It was just an amazing trip. I love that we continue to make our friendship a priority and make time for girls trips. Our time together recharges our batteries and we appreciate this time we get to spend together. Here are some pics from our trip!




Shortly after I got home from OBX, facial numbness led to a brain MRI showing extensive cancer involvement in the lining of the brain and skull. Progression was quick, leading to extreme headaches, nausea, and vomiting. We stayed a few nights at Hopkins for observation and management of the side effects. A spinal tap was also done and all results have been negative. The verdict is still out on if I have cancer within the spinal fluid. Something happened with the pathology and that test was never done. My Doctor and the tumor board at Hopkins all think that these results are negative and I do not have cancer within the fluid. There isn’t a plan to re-test at this point. We are trusting in the team at Hopkins on this.

On November 20th I started brain radiation. It was a really tough decision to do this. Brain radiation is so extreme and the side effects can be debilitating. At first I said no to treatment, but my Radiation Oncologist called me on the Sunday we were still at Hopkins and talked me through things. I felt more at peace with moving forward and we moved fast. Three radiation treatments were full brain. The following 11 treatments were cranial, skull, and jaw treatments. My amazing doctors have managed to create a treatment plan that saved as much brain tissue from being affected as they could in the last 11 treatments. This also made me feel better about moving forward with radiation. The side effects from radiation have taken a toll both physically and emotionally. It was rough for many weeks. I experienced extreme nausea and vomited for almost 2 straight weeks. To get to treatments I had to lie in the back seat of the car, and almost every time I got sick from motion nausea. Headaches were extreme and I ended up on a steroid to help manage these symptoms. Fatigue was also pretty extreme and I slept a lot during the days. I received hydration at Hopkins each day that I had radiation to help keep me hydrated since I was vomiting so often. I am still dealing with some weakness in my legs and stairs are hard for me to climb right now still. I have been done with radiation since December 11th and am still not all the way back to “normal.” Other side effects were blurred vision and lack of cognitive memory. I think I lost 2 weeks of true memories of what happened. Like I said, it’s been rough, but I am excited about feeling better and stronger each day. Just need to conquer the stairs! 
Ringing the bell on the last day of brain radiation! 

Radiation caused my hair to fall out and we did a little shaving at home. My sister-in-law came over, and she and Char shaved my head. Back in 2012 when I was originally diagnosed with stage 2B breast cancer I embraced the bald and wore my wigs 2 times total during that time of hair loss. This time around Charlotte really likes the wig and is obsessed with me wearing it. I am not sure if it makes her feel like I am not sick when I wear it, but she is just enthralled with it. She asks me to wear it to things and I was emotional about it. Not upset that she wants me to wear it, but more just emotional that she is so much more affected this time around. She is 6 years old, not 4 months old like back in 2012. I know that this is affecting her more than last time and it’s just an adjustment we are dealing with together as a family.

On December 19th I attended Charlotte’s Christmas music program. It was so fun to see her up on stage singing her little heart out. I didn’t feel great, but was blessed to be able to go. I started experiencing pain in my left side that night. I had had a PleurX tube put in my left side a couple of weeks earlier. I had fluid building up that was confirmed as cancer around the lungs. The tube allowed us to drain the fluid at home, which eliminated the need to go into the hospital for lung taps to drain the fluid. On the 19th I started having massive pain where the tube was and trouble breathing. We were draining every few days at that point as the fluid continued to decrease (a sign the chemo is working). We went from over 600CC of fluid down to 150CC that night. I was hoping draining would elevate the pain, but unfortunately it didn’t that night so we headed to the ER. As usual with our ER visits, it’s late at night when we end up going. Just seems to be the way things work out. I had amazing ER nurses who really advocated for pain meds for me. It took over 24 hours of not being able to take full breaths before comfortable breathing finally returned. It was the worst thing I have ever experienced to date on this journey with cancer. Not being able to breathe makes you panic, so I had to sit and just try to be calm, knowing that if I start to panic and breathe hard it would hurt so badly. I have a new appreciation for breath and being able to take a full breath. Just a horrible experience! They tried a nerve blocker in-between the ribs to try and elevate the pain and it didn’t end up working and was quite uncomfortable to have done. We ended up staying that night in the ER, and then got a room on the lung floor for monitoring. Once I finally got the breath back after the 24hrs I started feeling so much better. They drained a little fluid that was loculated, which means in a pocket that the drain was not in. This fluid came back with a bacterial growth so they gave me some IV antibiotics. I was able to switch over to oral pain meds and they were able to do an oral antibiotic, so I was able to come home. They removed the drain and are hopeful and felt confident that the fluid will stay at bay and no other drains or tapping will be needed. At first they said I would most likely have to be in the hospital for the holidays. I was so upset by this and was so happy when things worked out that I was able to go home before Christmas. I know so many people were praying that I would be able to come home. My family was praying so hard for me and when we got the word we could come home on the 21st it was truly an answer to prayer. I had AMAZING nurses at Hopkins. They were just on top of everything and really advocated for me with the doctors. My tolerance for pain meds is high and I have lost so much weight they are scared of me when I come into the ER setting needing more pain meds. Even the pharmacist Doctor came in the ER to see me and she was just so compassionate and concerned about my pain. She came up with plan that alleviated the pain and allowed my breathing to return to normal. It took time and it was a frustrating process but I’m so thankful I had the team that I had in the ER and on the lung floor.

I started a new chemo on the 18th of December, we are on to plan C at this point, as A & B chemos didn’t work enough to control the cancer. The chemo is called Carboplatin. I have had 2 treatments so far and things are going well. I have a rash looking cancer on my chest, and since it is visible it is helping us to monitor how effective the chemo is working. The rash seems to be changing and smoothing out, which is a sign the chemo is working (woo hoo!). This is such an answer to prayer. We are really hoping that this chemo stops the progression, as scans still showed growth and new involvement at my last scan. I will have scans again in Jan/Feb time frame, so we are hopeful we will see more reduction in tumor markers and lymph node involvement plus the lung fluid. We do have a plan D option, which is another chemo pill, to try should we need to move in that direction and we take comfort in knowing we still have a backup plan.
1st IV chemo on plan D    

My spirits are improving now that I am feeling better. It was rough during radiation. I woke up on Christmas Eve with an amazing feeling of hope and peace. It was just this feeling that came over me as I opened my eyes and I knew things would be ok. I would get better and stronger. I would conquer this cancer and live life to the fullest. The day was amazing and I felt the best I had felt in what feels like an eternity of pain and suffering. It was an amazing feeling and I am excited to share that here on the blog with all those who have been praying, sending positive vibes and love my way. I feel all of it and ask that you keep them coming my way. I so appreciate all the amazing people who have rallied behind me and have been supporting me through this crazy journey of stage 4 cancer.

We had an awesome 4 days of Christmas starting with Christmas Eve with my family and Christmas day with Steve’s dad, sister, brother-in-law, and little nephew. My sister stopped over for lunch and a movie with her beau and we stayed in our matching PJ’s all day. This was followed by Christmas brunch with dear friends of ours, and getting together with Steve’s mom’s family later in the day. Yesterday my all-time bestie came home and stopped over on her way through town and we enjoyed an awesome evening together. I felt so blessed that chemo didn’t kick my ass too much yesterday. I did take a hard nap in the afternoon that helped! It was just so great to feel good enough and strong 
enough to enjoy the company of my girls last night. 
Thanks Giving
 Christmas Pj's 
Christmas Eve with my Sister

Christmas Eve with Steve & Char
All-time best girlfriends a girl could ask for 
 

Have to give a shout out to my husband. It’s been a challenging two months, but he has been so attentive and active in my recovery. Cancer has really brought us closer as a family and Steve has just been an amazing support person. I am so grateful I have him by my side during this time. He has had to take on so much with me being so sick the last two months and it’s been incredibly stressful. I couldn’t ask for a better partner to have right now!
I am so thankful for you, who are reading this post and supporting me. I couldn’t be where I am without all the prayers, positive vibes, and love being sent our way. I feel the love and appreciate all the amazing support I feel from so many. 

Shine brightly, live happily, and smile!! Love xoxo – Erin

Wednesday, October 25, 2017

No News is Good News.....Not Necessarily

Hi everyone,

Sorry I have not posted an update in a while. Things have been a little crazy since my last post back in September. Rather then break it all up into separate posts, I am doing one big update. To sum it up, here are a “few” topics that sum up the last month or so:

·         Hospitalized twice, 1 for a port infection and the other for pain mgmt
·         Thoracenteses (#1 & 2)
·         Sarcoplasty
·         Pathology on Fluid from Thoracenteses
·         New Chemo (plan B)
·         Blood Transfusion (#2)
·         Fractured Ribs
·         Pet Scan Post-Colorado
·         Radiation
·         IV Mistletoe in DC

Both ER hospital visits resulted in 2-4 day stays. The port infection was treated with antibiotics. I was so worried they were going to remove the port, which they talked about doing. However, that was not necessary and the port stayed in, YAY! The second stay was for pain that we were unable to control at home with the oral meds. The pain continues to be rather unpredictable and comes on fast and with a vengeance. I am happy to say that since then, pain has been really well managed following the sarcoplasty. I still have a pain patch on 24/7, but I am off all other oral pain meds for the most part (pain is hard to predict day to day). The sarcolasty procedure went really well. It was done to provide some stability within my sacrum where the fracture occurred back in September. The port infection delayed the procedure by a couple weeks, but I was finally able to get in for the procedure. Up until the sarcolasty, I had a feeling/sensation in my back whenever I moved. I walked a little with a limp, favoring the left side, and just didn’t feel steady in the lower spine. It’s so hard to explain what it felt like in hindsight. Once the sarcolasty was done and I recovered I realized that this feeling was no longer there. I felt the stability and no longer felt the fracture rubbing and moving around. I am so thankful for this procedure. The doctors initially were not sure what they were going to do about the fracture. We could let it heal on its own (might not even be a possibility given the cancer detioration), re-radiate the spot (past radiation treatment had already targeted this area and been treated), or look for surgical options. My specific case was presented at a tumor board meeting and sarcolasty was an unanimous vote on how to treat the fracture. The procedure was out-patient and done under anesthesia. Recovery was pretty quick. I was up and about the next day with some pain and soreness at the surgical site.    

During my second stay in the hospital I had the 1st thoracenteses done. There was fluid building up around my right lung that appeared for the 1st time on a scan back in July. It was a wait and watch game to see if it increased or cased shortness of breath or pain. By mid-September the fluid had increased significantly and a thoracenteses (procedure to drain the fluid) was needed. I was experiencing shortness of breath and pain in my chest. It took a couple weeks before the pathology came back and confirmed what we feared but expected. There are cancer cells around the outside of my lungs. This is not considered lung cancer and so far the lung itself continues to be free of cancer. The cancer around the lungs is causing fluid to accumulate and they drained off about a liter of fluid. Today I had my second thoracenteses procedure. In just over three weeks the fluid had built back up and was compressing my lung. This time they removed about a liter and ¼ of fluid. With the new chemo regiment we are hopeful the fluid will stop accumulating. If future thoracenteses are needed, they are recommending a catheter be placed so that draining can be done at home and eliminate the need to go into the hospital for a procedure.  The procedure itself isn’t too bad. The worst part is the needle numbing the area and the pressure. I will be sore on that side where they went in for a few days.  The news about this new area of cancer, although expected, was still really hard to hear and digest. We were holding on to a glimmer of hope that the fluid was being caused by something else.   

When the fluid around the lung confirmed cancer cells, it was decided our current chemo plan (Ibrance chemo pill and Letrozole) may not be the most effective for my cancer. The new recommendation is a chemo pill called Xeloda (Capecitabine). The current plan is 1,500mg twice a day for 14 days followed by 7 days off. I am 10 days into my 1st cycle and so far side effects are manageable. Sunday I did start experiencing some symptoms of hand and foot syndrome which is where the soles of your feet and hands become red, swollen, painful, dry or start cracking. Right now it feels like I am walking on a sun burn, OUCH. I have been researching ways to help with these symptoms and am hopeful we can get to day 14 without adjusting the chemo. There are tweaks we can make like reducing the dose to better manage side effects if that is needed.  Appetite is so –so, not the best but could be worse. We are managing nausea with medicine.

My last post talked about my 1st blood transfusion and I ended up needing a second one. Right now my blood counts are holding up well being off of the 1st chemo Ibrance. Ibrance really did a number on my blood counts and bone marrow. It is nice to see some stability in my recent blood work. The shortness of breath we originally attributed to the blood issues was most likely more associated with the fluid around the lung.

During the scans done to monitor the fluid building up, I had several ribs that were either fractured or healing from a fracture at various times over the last few months.  I don’t really know when these have happened and I often experience tender ribs.  They typically cause some pain and discomfort. With cancer being within the ribs, fractures are to be expected due to how weak these bones have become.

The latest pet scan from a couple weeks ago was compared to the one I had done back in July. It showed the fluid around the lung but other than that no additional cancer was identified. It is great news that no new cancer was identified (aside from the recent cancer around the lungs identified prior to the pet). We are hopeful that this new chemo (Xeloda) will do two things: reduce the cancer tumors already identified and stop any continued growth or spread of the cancer. If we can keep side effects to a manageable level and the dose stays at its max, I am hoping we can accomplish some improvement by the next scan, which will be in Jan/Feb 2018. 

We wrapped up radiation on the humerus bone in my left arm in early October. The goal was to kill the cancer and prevent a fracture. No lifting over 10lbs for three months. Scans will be done to help determine the health of the bone and muscles. If things seem stable and a fracture does not occur between now and then, we can avoid a surgery to pin together the bones between the shoulder and humerus.

I started IV mistletoe treatments in DC the last week of September. Under the guidance of my doctor in Colorado, GW Center for Integrative Medicine in DC will be administering IV mistletoe once a week. We started out at 400mg since it had been a while since my last treatment in Colorado and we are working our way back up. The days in DC are long and we are still exploring the best and most efficient way to get to and from DC.  I am learning the metro, which I hate, but it is much better then driving straight into DC and dealing with parking and traffic. I do feel so much better when I am getting mistletoe and noticed a vast difference after just the 1st treatment here. Depending on how things look on the next scans, we will decide if this treatment is still worth the expense and travel costs once a week. In addition to the IV once a month, I will continue to do the subcutaneous (under the skin) injections. We are trying to find the right does for these injections done twice a week. I continue to work with Dr. Stacy at Namaste in Colorado and we have monthly calls to go over any changes/issues, blood work, meds and how I am feeling.  She tweaks supplements as needed based on blood work and side effects from chemo. I always leave these calls feeling hopeful and empowered to stay the course. It’s great to hear how my blood work is changing in a positive and supportive way. Using her recommendations on how we support my body and immune system while on the conventional chemo has been so great.  I get a little overwhelmed by the number of supplements that I am taking. Between the # of pills and the frequency/timing, it’s a lot to keep track of. Sometimes I feel like my tummy is just full of pills. But we are starting to see the benefits in my blood work, which is motivation to keep on pushing through.    

A lot has happened, that’s for sure. All this on top of all the normal life events, issues, routines and commitments that go with being an adult, parent, wife, etc. Not to mention the homework, memorizations, and school projects with Charlotte. Having cancer is a full time job in and of itself! There is never a dull moment. I am hanging in there and am keeping the faith that things will improve and get better. During and after my most recent trip to the ER for pain, I hit my lowest point in this journey so far. We are almost six months into this diagnosis and are still not seeing an improvement in the cancer. We are managing the side effects but a little glimmer of improvement is really what I want to see. I was withdrawn for a week or so dealing with all the negative feelings (disappointment, fear, anger, resentment, etc.) that had been building up over the past few months. Fortunately it passed and I came out feeling more determined and hopeful. At the end of the day, I have to get better and reach a “stable” prognosis. The alternative is just not an option. Mindset is so important and I have to work at it every day. Most days I can see the positive to override the negative, while looking towards the light. I celebrated Charlotte’s 6th birthday a couple weeks ago, and it reminded me of how special getting older really is. This age is so fun, but she is so aware of what is going on around her. Her questions about cancer and why I am sick are at times hard to answer in a way that makes sense to a 6 year old.

Each day is a new day! I am exploring meditation and trying to be more mindful and present in the day to day. I am learning to breathe through the pain and anxiety that most days bring. We are pushing forward towards a healing path of love, light, and laughter!!
          


Friday, September 1, 2017

Vampire Blood

Fresh cold blood from the blood bank

I knew while in Colorado my red blood counts where low and boarder line anemic. However, when I come home and learned I needed a blood transfusion my eyes almost popped out of my head. I was totally terrified, it just sounded so serious and dire to need a blood transfusion. Only people in horrific accidents or people who had lost large amounts of blood during surgery needed blood, right? Turns out that is not the case and it’s actually very common. I had no idea! I have been through so much and I take a lot of things in stride but this I just couldn’t wrap my head around. I really was terrified and freaked out. Afterwards It really was not a big deal so if you ever need a transfusion it’s really not as bad as you might think. I will say seeing the blood fill up the tub was a little freaky, it felt like it was crawling towards me. The whole time I kept thinking about the Twilight movies and I was thankful that I didn’t have to drink the blood like Bella Swan did during her pregnancy. It was still weird that someone else’s blood was going into my body. 
 


BP has to be taken on my leg because of the
blood clot I have in my left arm




Before we got started they did the normal set of vitals and my blood pressure was concerningly high. I mentioned I had been a little nervous and anxious about the transfusion so they went ahead and started the process. They continued to monitor it throughout the initial transfusion and it continued to be high. I was feeling quite calm by that point so I was a little surprised my BP continued to be so high. The nurse doing the transfusion was in contact with my Nurse Practitioner who gave the word to stop at only one bag of blood instead of the two they initially wanted. It turns out one of the meds I am taking to help strengthen my bones is most likely causing my high blood pressure. It’s been high for over a week now so we are monitoring it and waiting for it to come down to normal range. 
They look at Hemoglobin and Hematocrit when deciding to transfuse. My numbers are a little higher after this initial transfusion but still well below the normal range. We will see how my numbers look next week when they do my next labs, if my numbers are coming down mostly likely another transfusion will be needed. At least this time I will know what to expect and will be less anxious about the entire process. I talked to my Dr a little about this and if it would be an ongoing issue for me. We don't really know yet if it will be, but there is a chance my bone marrow is just no longer going to produce the needed Hem's I need. It could be the cancer in the bones itself, the radiation direct to the spine or chemo that is causing this new blood issue.  

I can mark this off my list of things that I have done, nothing like the thought of vampire blood to get your mind off your stage IV cancer diagnosis!!! My big bro Darin got the esteem privilege and pleasure of accompanying me to my transmissions.  

Selfie with the big bro!

Saturday, August 26, 2017

Curve Balls Hitting Me in the Head

It’s a cool Saturday morning and I am sitting on the couch typing this post with my hot cup of green tea and cartoons playing in the background. I feel little twinges of pain and stiffness in my lower back but I feel so blessed to be sitting here this morning. I love Saturday mornings where they day stretches out in front of you with no major plans or commitments. It’s the best!!

Since coming home from Colorado things have taken a very unexpected turn. I have been in a state of fog and loopy memories of the past two weeks. It all started super early Wednesday morning Aug 16th. We had enjoyed a really fun dinner with our Friends the Riley’s Tuesday night. We spend the evening catching up and just enjoying each other’s company. I felt great, minimal pain, maybe a little tired but overall not bad. Around midnight pain started in my lower back and began shooting down my butt and legs. It was definitely sciatic related pain which can be very painful. The pain continued to escalate and none of the pain meds I took even touched my pain level. Around 1am I knew we needed to head to the ER so we called our friends the Riley’s (who we just saw at dinner) and they came and got Charlotte and took her home with them. By the time they arrived to pick up Char I was in so much pain I could barely talk. We headed to the Johns Hopkins ER which is about 30min away. Steve said we got there in 15-20min but all I know is that this was the longest drive of my life. We had made that same drive during a painful episode a couple months ago and this was so much worse. I don’t remember much of the ride aside from telling Steve I thought I was going to die. We get the ER after what felt like a life time and I triaged within 5 mins, a record for the ER. My blood pressure is very low so I got back to a room right away. I also explained my diagnosis of stage IV cancer in the bones and having level 10 pain. Although my memories are a little fuzzy it was one of the best ER experiences we have had. Staff was attentive and they were ready to do whatever it took to get my pain under control. I should also mention that I had taken and extremely large amount of pain meds by the time I got to the ER and when I say a large amount that is not an exaggeration. I should have been knocked on the ground having taken so much. But the scary thing was nothing I took even touched the pain. We believe that the meds caused my blood pressure to be so low because the pain level I was feeling should have resulted in high blood pressure. No surprise the IV was a challenge and after two good tries the Dr did an ultrasound guided IV which worked great. The IV was in and we could start IV pain meds, YAY!! It took a little time to get dosing right but they finally got there and pain was reduced. I went on an every 2 hour regiment which worked but I was ready right at the 2 hour mark for more meds. We had to stay on top of it so the nurses would be ready before the pain got bad again. My sister Joey arrived around 4:30am and around 6am we moved to a more comfortable room within the ER observation wing. A few hours later we had a room in the Weinberg Cancer wing of the Hospital. I had emailed my oncologist letting him know I was in the ER and he stopped by as they were transporting me to the observation room. He reiterated to the staff the importance of managing my pain, it was so nice of him to stop in to check on me.

While in the ER I had a CT of my lower lumbar that showed a fracture in my lower spine (near the tail bone and the sciatic nerve). The source of my extreme pain was related to this fracture and the fracture was caused by the cancer. I had no trauma or injury to this area so the cancer had finally done enough damage to weaken the spine for the fracture to occur. We hunkered down for our stay at Weinberg knowing more tests would take place over the next day or so. A MRI of the lower lumbar was 1st on the docket. At this point I had not been hooked up to the pain pump where I could administer my own pain meds. It is so helpful on both me and the nurses to have a PCP pump for pain management. However this MRI was needed and the pump was not in yet so I took a dose of meds which was hopefully going to get me through the scan. MRI’s are long and lying on that hard table can be a challenge when you are experiencing back pain. Between transportation to and from the scan and the scan itself, by the time I got back to my room I was in so much pain I don’t know how I got through it. When they asked me what my pain level was I squeaked out 15. They had the pain pump waiting for me which was great but it took what seemed like an eternity for them to get it connected and ready for me. Once it was ready I was able to give myself meds but only every 10 min and I needed something to get my pain back under control after the scan. So they gave me a push of meds so I got a full dose and it didn’t take long for me to get some relief. My sister Kelly, her husband and my niece Sydney had come to visit and unfortunately they were there for the show of Erin being in so much pain, it was not pretty.

I had an additional MRI of the upper spine which showed some really discouraging news that there is new cancer on the spine in multiple places. They didn’t characterize all of the cells but did mention T2 being involved. We were devastated by this news but know that this cancer would have been there prior to starting the IV mistletoe treatments in Colorado. Praying hard that the Mistletoe is working throughout my entire body to heal and improve the existing cancer.

During my stay in the hospital I kept running a fever but I didn’t have any of the normal symptoms. They thought maybe it was a tumor related fever but wanted to rule out a few things, one being blood clots. After assessing both my arms and legs they found a deep vein blood clot in my left arm. This is the only arm that they can use for blood pressure, blood draws and IV’s. Fortunately during my stay I was able to get a port put in which will really help limit the use of my left arm which now can’t be used because of the blood clot. My port can be used for IV’s and blood draws. Blood pressure is being taken on my calf for now. I am on blood thinners twice a day which is a drag. I will have to take these shots for 3 month.

One other thing that we are dealing with is my humerus bone which has been significantly damaged by the cancer where it meets the shoulder bone. Initially they had thought I would need a pin put in to stabilize the bone and prevent fracture. There was a lot of debating on what the treatment plan should be, but it was decided that radiation first was the way to go. So we will be working on that in the next week or so getting mapped out and simulated for radiation.

The last two weeks have been just a whirlwind of information and curve balls. I felt like every update I sent to friends and family was filled with bad news.

Boom – spinal fracture
Boom – new cancer
Boom – blood clot
Boom – humerus bone potential fracture risk

I was feeling defeated and discouraged!!! I am trying to focus on the fact that mistletoe is coursing through my body and working hard to heal. Not only that, but I am working on diet and supplements that are also working hard within my body to support my immune system and build up what is broken inside of me. I know so many prayers are being lifted up and that so many people are supporting and pulling for me. I have so many blessings and as I sit here typing I am reminded of just how blessed I am. I have an amazing team of doctors who are genuinely concerned and working hard to create plans that will support me during this time. I have friends and family who are willing and able to do anything we need and help in any way. All the texts and encouragement from my girl tribe while I was in the hospital was so amazing. I don’t know what I would do without them. I have a healthy and vibrant daughter who is getting ready to start kindergarten in just two weeks. I am enjoying this day for what it is, a Saturday where the sun is shining, the weather is cool and we have no plans or commitments for this day. It’s just the RNR that I need right now.

Thanks for reading my updates and for all your support and love!

Xoxo – Erin

Tuesday, August 15, 2017

Home Sweet Home

Hi ya’ll!! We are finally home from our trip to Colorado and what an amazing trip it was. We left a little piece of our heart in the mountains. We will miss those gorgeous views, chill atmosphere and all the amazing people we met along the way.

Mistletoe treatments continued into week 3 and aside from some IV issues we wrapped up the week at 600 mg of mistletoe. We are working on the go forward plan but as of right now the plan will be to go to Washington DC once a week for maintenance mistletoe. I will also continue the injections I was doing prior to starting the IV mistletoe. Hopefully scans in a couple months will show improvement and reduced tumor markers. Continued prayers the mistletoe is working hard to heal the cancer within my body.

Our trip home was uneventful and unlike the trip out to Colorado, our flights were on time! We were all super excited to sleep in our own beds and to get back into the grove.

This week I am getting a port put in to help with future IV’s. With the daily treatments at Namaste it was clear that I needed a port. Being limited to only the left side (also the side where the surgery is needed to stabilize) for procedures is limiting and my veins are getting tired and scar tissue is starting to form in some of the go to veins. The right side is off limits since I had my lymph nodes removed on that side back in 2012. Procedures on the right side greatly increase my risk for lymphedema which we want to avoid at all costs.

One of the coolest parts of being in Colorado didn’t actually have anything to do with the actual State. I am not sure how she pulled it off, but my girl Emily mentioned that she had collected some cards for me to open while I was away. The night before we left she delivered a pile of cards (see photos). Cards were grouped by day with each little group containing anywhere between 3-5 cards per day. There was a LOT of LOVE packed into this little pile of cards. Each day I opened cards from so many loving and carrying people. Steve and Charlotte also had their own cards they opened which was great. The messages were so uplifting! I am not sure how Emily pulled off gathering cards from some many people but it was so amazing! I felt so loved knowing all those people were sending me positive vibes, prayers and love. 



 

Its only Tuesday of my first week back home and it’s been a busy one to say the least. On our flight home I told Steve I was feeling sad to be going home because I felt like I was in a little bubble in Colorado. It was just the 4 of us (us and Sydney) spending time together. My focus was on the mistletoe treatments and working with the team there. I didn’t want to come home and face the reality of more decisions to make.

Aug 14th was a little crazy for me with the humerus bone information and the port procedure being scheduled. Steve and I both initially forgot that it was also our 8th wedding anniversary. It wasn’t necessarily a joyous day full of celebration but that’s OK. This journey is really testing our vows “in sickness & in health” but we continue to face this together even though it’s not easy. I look forward to a big celebration for our 10th in a couple years!!