Friday, May 25, 2018

Humerus Bone

Such an amazing sunny day!!! I cannot get enough of the warm brightness of spring. Birds, bugs, flowers, green trees……….I love it all!!

You may recall back in November/December I shared that my humerus bone in my left arm was at high risk for fracture. The debate at the time was surgery to reinforce the bone, or to try radiation to kill the cancer cells. We went with radiation and I had 10 total treatments. At that time I didn’t have any pain or discomfort in the arm at all. About two months ago I noticed some swelling in my bicep, decreased range of motion and pain. The pain starts at the top of the bone and goes down to a little above the elbow with the worst on the high side of the bone where the humerus and the shoulder connect. The scans and x-rays began, which showed fluid build-up and a cancerous lesion that is growing out of the bone. The tumor that is growing outside the bone is what’s causing all the pain right now. I call it the “snuggle zone” for Charlotte. Her head is right at that level when we are snuggling on the couch and she bumps it on a daily basis. Ouch!!!! She has started to ask about my “bad arm” before she sits down with me which helps negate some of the bumps. It’s also the same arm that is typically use to carry things since my mastectomy back I 2012. The right side had the original surgery for lymph nodes dissection (preventing lymphedema has always been a focus for me). I also use it to push myself out of the car when I am parked and the same side I get blood pressure taken on. It’s hard to tell what the true pain level is at this point. I am still on a pain patch and we recently went from 75mg down to 62mg so it’s probably causing more pain then I recognize at this point. The pain patch is for the cancer in the lower lumbar spine that was causing so much pain this time last year. We are slowly weaning down the patch but I may never be total free of constant long term pain management at this point. I have been doing some lymphatic massaging which has helped some of the swelling go down in the arm.

I consulted with radiation oncology and she referred me over to orthopedic surgery for further evaluation. Unfortunately more radiation isn’t an option and it’s possible this treatment could have caused this to happen. Radiation can cause cancer (one of the risks you take) and with no symptoms or pain prior to the treatments it could have contributed to or not been effective in this current situation. With that being said, radiation has been very effective for me in other areas along the spine and brain and has really helped with pain mgmt.

Last week Steve and I met with the ortho surgeon who was very nice and patient with us. Yet another doctor who has been added to my team. I have lost count of how many doctors I have seen and consulted with at this point. The surgery itself isn’t super invasive which is good. They would go in and scrape out all the cancer, fill in the hole from the tumor removal and fortify the entire bone with a rod from shoulder to elbow. Recovery didn’t sound bad either and basically I should be able to apply weight pretty much right away. I have wanted to start yoga or some light weight training which is delayed by the fracture risk. I can’t put my full body weight on that arm. The surgery would be the same if I do end up fracturing or breaking this bone prior to surgery, there would just be more clean up needed on the bone or muscles depending on how it breaks.

Basically we need to weight the pros and cons of the timing. This surgery is needed but with chemo working is now the time to take a break necessary to allow for surgery? That is the question! It will come down to how long and how much pain can I tolerate until I can have a chemo vacation. Ideally it would be nice to get through summer and fall before surgery.

Never a dull moment in the life of stage 4 cancer that’s for sure. Even when things are going well on one hand there are most likely other things that are not be going so well on the other. We are happy with the results of chemo and it’s unfortunate we have to deal with another surgery and another issue. Thank goodness for amazing physicians and surgeons we have so close at Johns Hopkins. The collaboration and consulting between all those on my team happens behind the scenes and is quickly and effectively done.

One other topic I just want to clarify for my readers. Although the pet scan from my last post did show less lesions in the spine there were still too many to quantify. The bones don’t show up great on a PET scan so it’s hard to tell how they are responding if at all to the chemo. Radiation and vertebroplasty has been done to various parts of the spine which is what we attribute the reduction of lesions and pain to. “Too many to quantify” is still pretty extreme in terms of how advanced this cancer is throughout the bones.

I hope everyone has an amazing weekend, love to you all!

Monday, May 14, 2018

PET Scan Results

I wanted to share a quick update on my most recent PET scan. It was hard for us to believe, we have had such bad news from previous scans that seemed to consistently show progression over the past year.

Friday evening the PET scan was released for me to view with a message that said “Good News!” We have finally gotten the news we have been wanting to hear........shrinking lymph nodes, less lesions along the spine (thank you radiation), and all organs remain cancer free!! Great news for this mamma and an amazing mothers day gift!! However, Steve and I both felt unsettled at first. We felt like we should be shouting and celebrating this amazing news but for some reason we didn't do that. We just sat there letting it sink in, quietly pondering the results. Our faith in the results were clearly glass half empty (which is not my normal view) and when we actually received positive good news we didn’t know how to react. This is a reminder to always have faith and hope in the healing that can take place. Our hope and prayers were for “no growth” and to have a report of reduction is really amazing!

Now, we have no idea how long this will last or how long this particular chemo regiment will be effective for my cancer. But for now, this is really good news as we go into the summer months.

Thanks for all your prayers (they are working), love and support! Continue to pray for stability of my cancer and strength as I continue through treatments and side-effects.


PS: check out my 1 second claim to fame from the Orioles game on Sunday as they recognize Dr. John Fetting of Johns Hopkins University for advocating and fundraising for breast cancer prevention.

Mothers Day

Mothers Day Morning Love

Tuesday, May 8, 2018

One Year Later - Where I am Now

Hi ya’ll. It’s been some time since I last posted an update here. What is so hard to believe is that 4/28 marked my one-year mark of fighting and facing stage 4 cancer. This past year has been filled with so much physical and emotional pain that I am not going to write a recap post. I am going to write a “Where I Am Now” and not focus too much on the past year.

I am stronger and feeling so much better since the brain radiation finished in December. With the current chemo plan, which hasn’t changed since my last post (Lynparza along with the IV Carboplatin), I have really bad and debilitating headaches. Nausea is also a big issue. The current cycle is 2 weeks (1st week I do the Lynparza pills and one day of IV Carboplatin. The second week it’s just the IV treatment followed by a 2 week break). As of this current cycle headaches and nausea is much improved!

I had a period of really bad anxiety and depression but that has passed and I rarely have super down days (at least recently). Since I had a relatively non-emotional personality in the past, emotions can be hard for me to deal with. Hard for me and Steve, plus friends and family who try their darnedest to keep in touch and provide emotional support. Happy, carefree days are most certainly in the past, but I am hopeful that the more years I gain the more freedom we feel. When you are diagnosed with early stage cancer, there is an end in sight and you are able to count down the days of treatment, surgery, etc. With stage 4, it’s treatment for the rest of my life and the effectiveness of the current treatment plans that never ends. The three of us went to breakfast on Sunday and the waitress said, “Can I ask you a question?” “Sure,” I said. “Did you beat it?” At first, I didn’t fully hear her question and she repeated “Did you beat it?” I think both Steve and I took deep breaths at the same time and I said, “I’m actually not going to beat it, I am going to live with it.” She didn’t know how to respond and started sharing a family history on her step side of the family. She wished me luck as we were leaving. It didn’t damper the day, it is what it is!! I am having scans soon to see where we are. I am really hoping and praying for a sign of decrease in cancer especially in the lymph nodes but even a stable status quo would be ok at this point - NO Growth!

The past few months have definitely been the best since last April. In fact, we attended an annual event for a great non-profit (Believe Big) that we attend for Pushing Pink Elephants Inc. each year. I remember last April being in so much pain at this event. Pain that was coming from the cancer in my spine that we didn’t know was there yet. This year at the event I was almost pain free thanks to pain management, surgeries, and radiation. I even wore heals for the 1st time in a year. I paid for it later that night and the next day. My lower back wasn’t super happy with my decision, but it was a fun night to be dressed up and fancy and I had a fun time.

I still do not feel like I have adjusted to being home full time. Work was so much a part of my every day that a year later I still feel like a fish out of water. I so appreciate the time I have to rest when I need to and the extra time I get with family and friends that I didn’t have before. But I miss the routine, co-workers, projects, and the daily interaction with others. I miss the old “normal” day to day. The stay-at-home mom bit wasn’t in my plans and it’s a blessing, but when you don’t feel good and have to pick up your energetic 6-year old from school it can be hard. Mornings can be a struggle sometimes as well. It kind of feels like morning sickness or all-day sickness like I experienced with pregnancy. It’s just hard to know how the day will progress when I open my eyes in the morning. We have our bad, good, great, and amazing days, it’s just hard to know how the day will unfold. Steve’s morning questions are “How did you sleep?” and “Do you feel ok?”

I got to celebrate the big 37 on April 14th. It was a truly beautiful Saturday and we took a short trip to the beach to celebrate. It was nice to get away with Steve and Char and enjoy a good weekend of sun and fun. I always said that if I hit 40 and stayed cancer free I was going to have a huge party. That ship has sailed, but you better believe 40 will still be a big celebration with friends and family in a few years. I have the hope of stability and “stable” cancer!!

So things are going ok! Better than they have been in the last six months. I am not gaining weight, so I am pretty thin, but not losing anymore so that’s definitely a positive. I am getting stronger and able to do most of the things I was unable to do back in December and January after brain radiation. The biggest issue right now is getting through chemo without the side effects. I also have some pain and swelling in my left arm (humerus bone that was a fracture risk and was treated with radiation as the 1st option to rid the bone of cancer). So far, we are not sure the cause or how we will treat it going forward, but it is quite painful. Char bumps it on a daily basis. My hair is coming back from brain radiation. So far chemo’s are not causing hair loss so hopefully in a few months I have some hair growth.

Sometimes posting a Facebook post is easier for me to quickly share updates with friends and family. Here are two posts since I last updated this blog! Thanks for reading, keeping in touch, praying, and thinking about us! We love all of you and ask for continued prayers as we get ready for summer!


I found this blog today which pretty much sums up almost the last year of my life. Each day is different in terms of if it’s a good feeling day or a bad one. Every morning we assess and there are many days (like this week and last) where I stay in bed and Steve drops Char off at school or days when the mornings are good, but the afternoons are bad and someone has to pick Char up. Chemo is so hard on your body and with no end in sight for treatments you don't see the ending (I so took for granted that chemo countdown I did back in 2012). Scans put the fear of God in you and each symptom has you thinking of progression. Even good scans give you pause when you feel something isn't right because you are having symptoms or feel something is just not right in your gut (that was my day yesterday). It’s a hard road to go down for the rest or your life. Thanks for everyone's continued prayers, texts and love!!!

Shine brightly, live happily and smile!!! Xoxo

February 27th:

Chemo day! Two types of chemo for some double hitting cancer kicking power. So far it seems to be working at reducing lymph node involvement so we may have finally found the chemo that will work for me.

Pictures from the last couple of months:

Believe Big Fundraiser (Brother Darin, his wife Amy & Steve)

Believe Big Fundraiser - Hair & Heals

Birthday celebrations with my girls in NC

Birthday at the beach, turning 37- 4/14

Charlotte took this picture of her mamma

St Patty's Day with this stud

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………………………!!! 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!!