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

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 1^st thoracenteses done. There was fluid building up around my right lung that appeared for the 1^st 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 1^st 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 1^st blood transfusion and I ended up needing a second one. Right now my blood counts are holding up well being off of the 1^st 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 1^st 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 6^th 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!!

          

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!

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

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!!

Keep Calm and Colorado

The 1st two weeks in Colorado have just flown by! It is absolutely gorgeous here with all the mountain views at every turn (we may decide not to come back to MD ;o). Our flight out was an interesting adventure because our layover in Denver was delayed 5 hours. We spent a lot of our time in the airport trying to keep a 5 year old happy and entertained. She did great considering and we colored, played several games of Go Fish, watched movies and walked around. We were all a little tired by the time we arrived in Durango but we still explored the town a little that night and stopped for dinner.

Treatments started on the 24th of July. I started with hydro therapy and nutritional IV infusion. Hydro therapy is a Chinese medicine technique which is a series of rotating hot and cold towels applied to the chest/abdomen and back. This technique is used for promoting overall health and immune system strength. It is also used to help open up the blood vessels for better mistletoe results. The cold towel is quite invigorating and shocking. I can’t seem to get used to the cold towel and always do a little squeal when that part comes. The nutritional IV was to help give me a good base of vitamins, minerals and amino acids from the flight and change in altitude. Speaking of altitude, we all transitioned well to the higher elevation with no major issues. Each week I have a few days of hydro therapy and then a few days of acupuncture. I have mistletoe every day Mon-Fri.

During week 1 I had great energy and we ended up doing a lot of car rides around exploring the country side and we did some mountain climbing (in the car). The sites and views are just amazing and the pictures just don’t do them justice. We love CO and the food here has been so yummy. There are a lot of local grass-fed meats served with local produce and a lot has been organic, which we love and appreciate.

Mistletoe treatments started on Tuesday, our second day here. We started with 100mg and by the end of week 1 we were up to 300 mg, as we gradually increased the dose. Mistletoe can cause a reaction of itching and/or hives. The hives started at my injection sites form where I was doing the injections at home for the last few months. During the 1st week they were not too bad and typically would subside a few hours after the infusion was done. I had some blood work done a couple days into week 1, which showed my blood counts were pretty low. Not necessarily surprising since I was in my second week of my 21 day cycle of chemo. My oncologist decided I should stop this cycle of chemo so my counts could rebound (I have yet to complete a full cycle of chemo without stopping early).

During the second week, the mistletoe reaction was a little more than the Dr. really wanted, so we stayed at 400 mg. In addition to the reactions, my back pain started spiking Sunday night (the start of week 2) and continued into Tuesday night. It was the typical level 10 pain and we were worried we would need to make a trip to the ER; however, we were able to get the pain somewhat under control until it subsided. That second week started out rough and then on Thursday they added vitamin C to my infusion. The combination of Mistletoe and vitamin C was quite potent for me. When I left I had rashes up my arms and on my thighs and was itchy everywhere. I also ran a low grade fever and was snuggled in bed all afternoon and evening that day. Friday’s infusion was just the 400 mg of mistletoe and I felt totally fine after that treatment, which confirmed the vitamin C was causing more of the reaction. More recently we have had some IV issues getting a line started. Because I had my lymph nodes removed back in 2012 as part of my initial diagnosis, we are limited to using my left arm for IV’s, blood work, and blood pressure. Friday of the 2nd week it took 5 tries/sticks to find a vein that would work (totally no fun at all).  Once I am back home I will need to look into getting a port put back in because access going forward is going to be a challenge. 

Even though I had a few rough days, overall I have been able to get out and explore with everyone. Charlotte totally loves it here and tolerates some of our long exploring car rides really well. We have been able to do way more than I ever imagined and it helps that a lot of our adventures we can do in the car, stopping to take pictures as we see the sites. We attempted one hike on foot but didn’t get far before we turned around because I was tired. My niece Sydney flew out for weeks 2-3, which has been so awesome. We love spending time with Sydney and Charlotte loves having someone to play with. They have such a cute little bond. It has been really helpful for us to have Sydney here. Taking Charlotte to treatments every day during the 1st week was great, but she was getting tired of going. It’s been really nice for the girls to do fun things while I am in treatments. Steve typically works during treatments, so it’s been great for him to have that time and not need to entertain Charlotte.

I feel so blessed to be able to travel to Colorado for these 3 weeks. The atmosphere here is so chill and relaxed. Everyone is so friendly and they seem to just enjoy life living in Colorado. It is so different than being back home in MD. This trip has been truly wonderful for us as a family. We have been able to spend a lot of time together and really have quality time that we don’t seem to have an abundance of at home. It’s been a really great bonding time for us!!

Here are just a few of our favorite pictures of our trip so far!!

Day 1 (excited to get started)

James Farm, Durango (amazing view & food)

James Farm, Durango

Coal Bank Pass - Elevation 10,640

Coal Bank Pass - Elevation 10,640

Coal Bank Pass - Elevation 10,640

Pinkerton Hot Springs, Durango

View driving up Purgatory

Purgatory

Low counts means mask

Driving to Silverton 

We found this waterfall on our drive to Silverton

Chasing waterfalls

Wildflowers at Coal Bank Pass 

Wildflowers at Coal Bank Pass 

Four Corners (where Arizona, New Mexico, Colorado & Utah met)

Stage Coach Ride in Durango

Town of Telluride

Waterfall outside the town of Telluride

The Tell Tail Signs

Steve calls them phantom pains and I had them often over the last year or so. My most frequent pain was in my rib cage around the kidneys on the left side (which we now know is extensively involved in cancer). I would normally end up at Patient First complaining of kidney pain and diagnosing myself with a UTI. Inevitably, I would always have the beginnings of a UTI, but no explanation for the pain I was experiencing. Finally, after showing up at Patient Frist one too many times with the same symptoms, they recommended that I see an Urologist. On occasion, I would discuss my symptoms with my doctors, but the recommendation was always to try some ibuprofen and to reconnect if the pain didn’t subside. The pain ALWAYS went away within a few days. It was only in February of 2017 that I started to experience longer lasting pain. This pain started stopped me from doing normal tasks at work and at home. The pain was most prominent in my lower back, but I still had those “phantom pains” in my ribs. I had been working out and jogging regularly up until February when the pain became more intense. Despite my family doctor recommendation that I schedule an appointment with my Oncologist, I decided to look into chiropractic care for my pain. I had scheduled an appointment to see my Oncologist in April, so I figured I would give it a few months to see if chiropractic care helped.

The pain seemed to come and go despite the chiropractor adjustments and at times it was still quite intense pain. I started having issues sitting for long periods of time, standing, lying down, carrying groceries, and bending to pick things up. I was constantly icing my back, but nothing really seemed to help with the pain. I ended up in the ER one day during work because the rib pain was off the charts. I again was still thinking I had a kidney infection. The CT in the ER cleared me of any kidney stones, but guess what? I had the start of a UTI. I got an antibiotic and was sent on my way. I stayed in contact with my Urologist, keeping her updated as the pain was not getting better. She switched to a different antibiotic and scheduled a CT with contrast to get a better picture of what was going on. This ended up being the CT in April that showed the initial abnormalities that would lead to my new diagnosis.

My pain continues to be very intense at times and can quickly get to a level 10 in a short period of time. We are hopeful that treatments of chemo, radiation, and alternative therapies will help to elevate the pain soon.

Stage 4 Cancer

Hearing the words “you have cancer” a second time is just as devastating as the first time you hear those words. Nothing really prepares you, not even a week of knowing they saw something on a CT scan. It was a Thursday afternoon in April and my girl Emily and I were loading up the car to head to South Carolina for a girls weekend when I received a call from my Oncologist’s office. They had reviewed a CT scan that had been ordered by my urologist (I had what I thought was a kidney infection that was not getting better with antibiotics) and they wanted to see me that day. Because I was heading out of town for the weekend, they said they would touch base with me Monday to discuss my scan and to enjoy my vacation. Around this same time, my CT scan was released to me via the online medical record system, which allows me to review all of my tests and communicate with my doctors. The scan showed some abnormalities within the lower lumbar and included a recommendation that further evaluation was needed to rule out metastatic disease. My heart dropped as I read the scan, but I thought the recommendation could just be super proactive, and I was hopeful that other scans may rule out cancer. The weekend flew by and we had a great girl’s weekend. I was still in a lot of pain around the kidney area (T11) the entire weekend, but was still able to have fun even with the scan in the back of my mind.

First thing Monday morning I received a call from my Oncologist who requested I come in right away to discuss the CT scan. I went by myself on my way to work, which in hindsight was not a good idea. He discussed the scan and the findings with me and we lined up an MRI and a PET scan to confirm metastatic cancer. The MRI was scheduled for that night and the PET scan was later in the week. I knew deep down that these additional scans would show cancer, but I was hopeful that it wouldn’t be extensive. After a teary call to my husband Steve, he immediately went and picked up Charlotte (our 5 year old) from school and met me at home. There were a lot of tears as things began to sink in and the reality of what we may actually be facing took over our thoughts. My mom and sisters showed up shortly after we got home and we spend a few hours just talking and trying to maintain normalcy.

Friday of this same week Steve and I met with my Oncologist to discuss the results of the MRI and PET, which had not been released to me yet so I didn’t know what they showed prior to going in for this appointment. My Oncologist explained that both scans showed extensive cancer throughout my entire skeleton, primarily in my spine. My T11 was very advanced which explained the pain that I was experiencing in this area. The PET also revealed there was cancer in the lymph nodes across both sides of my chest and the nodes in my collarbones. Basically cancer had taken over my body with the exception of any organs or the brain (which is a good thing considering). I actually have cancer in the bones of my face, how crazy is that? A lymph node biopsy done the following week confirmed that my recurrence was ER/PR+ HER2- (the same breast cancer I had fought 5 years earlier)! This was hard news to hear and digest as we sat in the little exam room on a Friday morning. To say we were devastated is probably a gross understatement. To be 36 and facing a second cancer diagnosis in just a few years just didn’t seem real, and this diagnosis meant a lifetime of stage 4 cancer. Cancer in the bones and lymph nodes was a game changer for us.

And so begins this new cancer journey. My biggest fear has been a recurrence of cancer and most especially bone cancer. I watched my Dad deal with prostate cancer that spread to his bones and the pain that he endured was so hard to watch.