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!!

Thursday, August 10, 2017

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



Monday, July 3, 2017

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.

Monday, June 12, 2017

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.

Friday, January 30, 2015

Shh, Don't Tell Mommy

This all started with a pink cupcake when Charlotte was 2.  During breast cancer awareness month, Charlotte's daycare had a bake sale to raise money for charity.  They displayed yummy treats for the parents to purchase as they picked up their child(ren).  Char asked her Daddy if she could have one, and because Daddy is the best, he said "yes, but don't tell your Mommy".  That same month, I had been doing a sugar elimination challenge with PPE, so I was in full on NO SUGAR mode.  As I entered the door from work that day, Charlotte greeted me with a big hug and whispered "I had a cupcake, but shhhh, don't tell Mommy".  We laughed.  It was cute, and I really wasn't mad.  "Don't tell Mommy" has become a little joke.  Although, Charlotte doesn't quite get the concept of a secret just yet.  Steve and Charlotte periodically (hopefully not that often) enjoy treats together when I am not around.  I try not to be a crazy "NO" parent when she asks for things, and it's honestly getting harder and harder to keep all those unhealthy treats out of her life.  She sees kids at daycare eating Munchkins for breakfast and Lunchables for lunch.  I try to explain the difference between healthy and unhealthy snacks so that one day she can make the distinction on her own.  She knows she can't have the fun kid yogurt at the store, because it has too much sugar.  Every time she goes to the store with us, she picks them up and says "these aren't healthy right"?  I think she secretly hopes one day I will have a different answer.  She knows she can't have candy, and she handles that pretty well (although M&M's did get us over the potty training hump).

During a family holiday get -together, someone was handing out Ring Pops to all the kids.  She didn't actually ask if she could have one, but watched as the kids ran around with theirs.  After a little while, she did ask what they were eating.  I explained how it was candy and that she couldn't have any right now.  I get so annoyed when people offer her candy, but honestly I was that person.  I wouldn't have thought twice about giving candy to my nieces and nephews a few years ago.  Soda, candy, desserts, donuts, you name it, I offered it and even went out of my way to buy it for them.  About two years ago, I showed up to my parents' house early one morning, and one of my nephews said, "you didn't bring donuts?  How disappointing!  You always bring good stuff".  Although I have made a full 180 when it comes to foods, not everyone feels the same, and I get that.  The best I can really do is make sure Charlotte understands the difference without feeling left out when it comes to treats.  And look out if there is a birthday party, because she knows that means cake or cupcakes, and she is totally allowed to have one :o)