Rough Week
8/10/19
This week was pretty rough. So much happened that I am fuzzy on where to even start.
First, I did go to Virginia! It was so, so, so wonderful to go to Steph's bridal shower and see friends! I also got to have dinner with Lynn, breakfast with Dad and Ann, and then spend time with the Wisemans and Marion & Deane. I definitely needed that trip to VA.
To be honest, I felt pretty yucky the whole time I was there. I was feeling weak and low for about a week prior, but I was intent on going. I just assumed feeling icky was part and parcel of this whole treatment. I was shaky and exhausted-- driving home was particularly challenging, and when I arrived home, I slept for more than four hours in the middle of the day.
The next morning, we met with Dr. Drake. He reported that there is a second lesion in my back and that we are likely going to start radiation. (It is unclear if this second lesion is new or not.) One is going into the "soft tissue" and the other is hugging my spine. Both are around L3 and L4. He attributed my fatigue and shakiness to the medication and likely my thyroid. He suggested I take naps. I rolled my eyes-- I hate naps. I have things to do during the day.
I also let Dr. Drake know how ridiculous the infusion center was. I asked him who I can let know that this was an unacceptable level of discomfort and waiting. He gave me a name. I'll definitely send a letter.
We left for my infusion expecting a similarly terribly experience. It was not so bad this time. The waiting room was similarly unpleasant, but we only waited for an hour. There were many more able-bodied people today. Chris an I wondered if the shortened wait time was because I had made Dr. Drake blush with how upset I was. Regardless, it was much, much quicker!
As we drove away, I noticed that Chris was taking a different route. About ten minutes going the wrong direction, I asked what was going on. "A surprise," he said. We walked into a Starbucks and I burst into tears--Jacek was there! He had sent Chris a message while I was in the infusion and they coordinated a meet-up. There is literally nothing better than seeing friends!
We chatted and took a walk in the park. I was feeling my heart beat quickly and I had some pain in my chest as well. We were nearing the end, so I just ignored it and hoped it would go away. (It did. Yay!) Later that day, I continued to feel awful. I took a look at my apple watch heart rate data and saw that my HR was never under 90-- not even when I was asleep. It had gotten well above 170 while I was in the park. I was laying in bed and it was over 100. Chris encouraged me to call my team back and just let them know. They mentioned the thyroid again, but also wanted me to get an EKG. Our appointment with the radiation oncologist was moved to the next day, so we scheduled it for the next morning.
Our Wednesday started with bloodwork and the EKG. Then, we went up to the OCIU (Urgent Care for Oncology), because they had asked us to check in there. My NP Tiye looked at the EKG, and said she wanted me to get an Echo of my heart today as well. Chris and I took a little break for morning tea/breakfast and got carrot cake at Carrot Top (and THANK GOODNESS WE DID! We did not eat again until dinner.)
We left Carrot Top for Dr. Horowitz. The walk around the block and to the radiation center wiped me out entirely. I slept in the waiting room for 20 minutes while we waited for our appointment. Dr. Horowitz is a super-sweet and kind man. We enjoyed talking with him. He let us know that radiation is a good option and that we likely won't need surgery; however, we should speak with the surgeon, Dr. Reid first. He also said that we would need a specialized scan before beginning, and then about a week of planning. When we let him know we planned to be out of town starting Sunday, he got us into the scanner THAT DAY. He also called Dr. Reid's office to make sure we would meet with him THAT DAY as well.
We left Dr. Horowitz's office to get the echo of my heart. Then, immediately, we were called back to the OCIU. There, Tiye told us that my thyroid was very, very high and that Dr. Drake did not want me to travel. I replied "then he can call my sister and tell her, because I am not going to do that." She laughed, I was serious. She prescribed some beta blockers to slow down the heart beats and instructed me to take them right away. She asked me to call her before leaving the hospital.
Our next stop was the special scan. This scan was to get high resolution images of my lesions, make a mold of my back to help guide the radiation, and to give me four tattoos to help them be even more precise with the lasers. At the end of the scan, they gave me my radiation schedule it looks like five doses of radiation in about a week. We start August 20th. The scheduled times are mostly in the middle of the day. When I saw this, I cried. I was feeling super-guilty for all of the time Chris has spent this summer at the hospital with me. He was, at that very moment, missing a lunch with a friend. He had planned to coach cross country, and with this schedule, he would likely have to miss much of that too. My sick person guilt was overwhelming me. Dr. Horowitz saw me crying in the hall and said he would help change some of them-- so we shall see.
I cleaned myself up and scampered with Chris to our next appointment, #7 of the day: Dr. Reid, spine surgeon. Dr. Reid is a bro. Chris described him as "a surgeon straight out of Scrubs." I appreciated his relaxed attitude and casual demeanor. He confirmed that we wouldn't need surgery now, and helped us understand the different kinds of pain in my legs.
We walked out of the Neurology Center back towards the OCIU and our car, I called Tiye. She said that Dr. Drake would only be OK with me leaving if there was a hospital within one hour of the beach house, that I would need to have labs done while I was away, and that I needed to see in endocrinologist before I left. He acknowledged that while he would prefer I stay, that it would be good for my mental health for me to go. I stayed on the phone while she googled hospitals. Carolina East Medical center is 59 minutes away from our beach house!
I met with the Endocrinologist on Friday morning. Dr. Lowe-Shin is completely lovely. She explained that my thyroid had a reaction kind of like a volcano exploding. One of the hormones produced by the thyroid were unmeasurably high-- beyond 7, which is the most they can measure. She suggested I take more of the beta blocker if i felt my heart beating too fast, but that I will likely return to normal and then dip too low. Thus, I need to have more labs done to keep an eye on it. Dr. Lowe-Shin gave her blessing for us to go to the beach!
Today, I am feeling pretty good. The beta blockers are working and I am not in much pain at all. We are looking forward to a restful beach week with the sibs, and then a busy week of trying to get ready for school while getting radiation.
This week was pretty rough. So much happened that I am fuzzy on where to even start.
First, I did go to Virginia! It was so, so, so wonderful to go to Steph's bridal shower and see friends! I also got to have dinner with Lynn, breakfast with Dad and Ann, and then spend time with the Wisemans and Marion & Deane. I definitely needed that trip to VA.
To be honest, I felt pretty yucky the whole time I was there. I was feeling weak and low for about a week prior, but I was intent on going. I just assumed feeling icky was part and parcel of this whole treatment. I was shaky and exhausted-- driving home was particularly challenging, and when I arrived home, I slept for more than four hours in the middle of the day.
The next morning, we met with Dr. Drake. He reported that there is a second lesion in my back and that we are likely going to start radiation. (It is unclear if this second lesion is new or not.) One is going into the "soft tissue" and the other is hugging my spine. Both are around L3 and L4. He attributed my fatigue and shakiness to the medication and likely my thyroid. He suggested I take naps. I rolled my eyes-- I hate naps. I have things to do during the day.
I also let Dr. Drake know how ridiculous the infusion center was. I asked him who I can let know that this was an unacceptable level of discomfort and waiting. He gave me a name. I'll definitely send a letter.
We left for my infusion expecting a similarly terribly experience. It was not so bad this time. The waiting room was similarly unpleasant, but we only waited for an hour. There were many more able-bodied people today. Chris an I wondered if the shortened wait time was because I had made Dr. Drake blush with how upset I was. Regardless, it was much, much quicker!
As we drove away, I noticed that Chris was taking a different route. About ten minutes going the wrong direction, I asked what was going on. "A surprise," he said. We walked into a Starbucks and I burst into tears--Jacek was there! He had sent Chris a message while I was in the infusion and they coordinated a meet-up. There is literally nothing better than seeing friends!
We chatted and took a walk in the park. I was feeling my heart beat quickly and I had some pain in my chest as well. We were nearing the end, so I just ignored it and hoped it would go away. (It did. Yay!) Later that day, I continued to feel awful. I took a look at my apple watch heart rate data and saw that my HR was never under 90-- not even when I was asleep. It had gotten well above 170 while I was in the park. I was laying in bed and it was over 100. Chris encouraged me to call my team back and just let them know. They mentioned the thyroid again, but also wanted me to get an EKG. Our appointment with the radiation oncologist was moved to the next day, so we scheduled it for the next morning.
Our Wednesday started with bloodwork and the EKG. Then, we went up to the OCIU (Urgent Care for Oncology), because they had asked us to check in there. My NP Tiye looked at the EKG, and said she wanted me to get an Echo of my heart today as well. Chris and I took a little break for morning tea/breakfast and got carrot cake at Carrot Top (and THANK GOODNESS WE DID! We did not eat again until dinner.)
We left Carrot Top for Dr. Horowitz. The walk around the block and to the radiation center wiped me out entirely. I slept in the waiting room for 20 minutes while we waited for our appointment. Dr. Horowitz is a super-sweet and kind man. We enjoyed talking with him. He let us know that radiation is a good option and that we likely won't need surgery; however, we should speak with the surgeon, Dr. Reid first. He also said that we would need a specialized scan before beginning, and then about a week of planning. When we let him know we planned to be out of town starting Sunday, he got us into the scanner THAT DAY. He also called Dr. Reid's office to make sure we would meet with him THAT DAY as well.
We left Dr. Horowitz's office to get the echo of my heart. Then, immediately, we were called back to the OCIU. There, Tiye told us that my thyroid was very, very high and that Dr. Drake did not want me to travel. I replied "then he can call my sister and tell her, because I am not going to do that." She laughed, I was serious. She prescribed some beta blockers to slow down the heart beats and instructed me to take them right away. She asked me to call her before leaving the hospital.
Our next stop was the special scan. This scan was to get high resolution images of my lesions, make a mold of my back to help guide the radiation, and to give me four tattoos to help them be even more precise with the lasers. At the end of the scan, they gave me my radiation schedule it looks like five doses of radiation in about a week. We start August 20th. The scheduled times are mostly in the middle of the day. When I saw this, I cried. I was feeling super-guilty for all of the time Chris has spent this summer at the hospital with me. He was, at that very moment, missing a lunch with a friend. He had planned to coach cross country, and with this schedule, he would likely have to miss much of that too. My sick person guilt was overwhelming me. Dr. Horowitz saw me crying in the hall and said he would help change some of them-- so we shall see.
I cleaned myself up and scampered with Chris to our next appointment, #7 of the day: Dr. Reid, spine surgeon. Dr. Reid is a bro. Chris described him as "a surgeon straight out of Scrubs." I appreciated his relaxed attitude and casual demeanor. He confirmed that we wouldn't need surgery now, and helped us understand the different kinds of pain in my legs.
We walked out of the Neurology Center back towards the OCIU and our car, I called Tiye. She said that Dr. Drake would only be OK with me leaving if there was a hospital within one hour of the beach house, that I would need to have labs done while I was away, and that I needed to see in endocrinologist before I left. He acknowledged that while he would prefer I stay, that it would be good for my mental health for me to go. I stayed on the phone while she googled hospitals. Carolina East Medical center is 59 minutes away from our beach house!
I met with the Endocrinologist on Friday morning. Dr. Lowe-Shin is completely lovely. She explained that my thyroid had a reaction kind of like a volcano exploding. One of the hormones produced by the thyroid were unmeasurably high-- beyond 7, which is the most they can measure. She suggested I take more of the beta blocker if i felt my heart beating too fast, but that I will likely return to normal and then dip too low. Thus, I need to have more labs done to keep an eye on it. Dr. Lowe-Shin gave her blessing for us to go to the beach!
Today, I am feeling pretty good. The beta blockers are working and I am not in much pain at all. We are looking forward to a restful beach week with the sibs, and then a busy week of trying to get ready for school while getting radiation.
WOW!
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