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
