I know I have been a little quiet lately. Truth is I haven’t been doing that great. I have had a lot of doctors appointments, scans, brain radiation(yeah that sucked), and my infusions of Kadcyla resumed July 1, 2019.
I had started a post back in August before radiation began and then tried to continue it post radiation and well let’s just say I couldn’t post it. Whether or not I will ever post it I can’t say. I don’t even want to read it myself. I am not sure it’ll make sense. So let’s start at the beginning of my summer.
I know I did a post after brain surgery. I am not sure what I touched on and what I didn’t. I apologize if I repeat myself but those who have seen or spoke to me lately know I am constantly repeating myself. I don’t think I fully recovered from surgery and I was thrown back into infusions. I didn’t start driving again till the end of July and it was short distances. Now I feel a little more comfortable outside the city driving on freeways but inner city driving is still a struggle for me. This is almost 4 months post-op. Now there are several more factors at play than just the surgery itself. I realize this.
First I want to address what my surgery revealed. I feel I touched on it but I didn’t quite explain it. The tumor was HER2+ ER- PR- which means its from one of my primary breast cancer tumors, to be more precise my left breast cancer. A quick non medical(because I am not a doctor) explanation. When your primary tumor(in this case my left breast cancer) metastases to another organ(in this case my brain) it is called a secondary tumor. In my case it was weird because I had two primary tumors to begin with. Once your cancer has spread to another organ you are now considered stage 4. So what does that mean exactly. Well if you are a statistics person its says the survival rate over a 5 year period is about 22% with a median of 3 years. Not the best thing to read before you are even 40. However, there are new advances in the cancer field every day. Some may live for 10+ years. If you were not aware once you are stage 4, you are always considered stage 4. Treatment continues until that stops working and you begin a new treatment etc. There is no cure for this stage, its in your blood it can stabilize, which is the goal. The plan for me is to continue with Kadcyla which does not penetrate the blood/brain barrier(not many drugs do) to keep the body stable and do a brain MRI every 4-6 months and my PET scans every 3 months. As of August 9, 2019 my PET scan showed I am stable. My next brain MRI & PET scan is scheduled for November 4, 2019.
Next I want to talk about my brain radiation. This was completely different than my chest radiation which I plan on doing a post on later under my cancer journey header. The brain radiation was different than my chest. First it was only a few treatments but longer in length and higher in doses. For my plan I had a total of 3 treatments. The first two were 60 min in length and the last was a 45 min session. These were spread out over 2 weeks. Unlike the chest radiation which was 5 days a week for 6 weeks but only about 10 min sessions. I also had to begin taking steroids again which started a few days prior to my first session (which was on August 5, 2019) and after my last session (August 12, 2019) they began to wean me off of them over another week and half. Now I was on steroids beginning in May through about a week or so post surgery and the dose they put me on for radiation was higher. So I got all the lovely side effects. Since beginning in May through August I gained at least 15-20 lbs. Now this past month and half being off the steroids I’ve dropped 13 lbs. Weight gain is the one of the common side effects. Well I also started experiencing anxiety and panic attacks which were heightened with the steroids. I also wasn’t able to sleep, maybe 3 hours a night towards the end. It was bad. That was just the steroids. Radiation effects I will get into after I discuss the setup before I even began radiation.
July 19, 2019 I went in for my initial setup for radiation. This appointment they created my head and neck mold that would put me in the same angle each time. They also made a face mask for me that snaps into the table and holds me tight. I call it my serial killer mask. It’s my Jason from Friday the 13th mask. Yes I got to keep it. Yes I will post a pic of it. They also did a CT scan that they would use to overlay with my previous MRI scans to get the exact locations they would be targeting. Apparently they didn’t get what they needed from it because the following Monday they called me to send me to another brain MRI on July 23, 2019. I will say of all my brain MRIs this is the only one I didn’t freak out on. They gave me music and a mirror that allowed me to see out of the machine any time I needed to. My first radiation wouldn’t be until August 5, 2019. It takes time to set everything up. To recap I began my infusions of Kadcyla again on July 1 and by the time I would go to my first radiation I had another infusion on July 26, 2019. This radiation was different. It was longer but also the table would move around the room. It was kinda like a ride, as long as you don’t think about what is actually being done to your brain. After the first treatment I felt the exhaustion side effects right away. I also got a burning sensation where it was treated. This was similar to my chest radiation the difference with the chest I didn’t get the exhaustion till about 3 weeks in. Just for a side note as well. I was receiving the Kadcyla infusions during my chest radiation as well. I’ve been on this drug for year and half now. By the second treatment I was so exhausted but the steroids were full on raging. I was not able to sleep. Talk about walking zombie mode. The final treatment was on August 12, 2019 that following Friday August 16, 2019 I would get another Kadcyla infusion. This time the side effects were the worst I have had since beginning this drug. Before I go into those I want to say thank you to Amy for spending her birthday with me while I got treatment. That’s friendship!
This is the most writing I’ve done in the past few months. Since I have never felt recovered from surgery then being thrown back into treatment and getting brain radiation I am not myself by any means. Being off of work has been very beneficial and much needed. My exhaustion levels and nausea alone have been the highest they ever have been. I’m in pain daily between headaches, joints and bone pain. I am also having scalp irritation from the incision and radiation. I struggle at daily tasks. I thought by now I would feel more like myself but honestly I am not even close. So if I’ve missed your texts, calls or posts I apologize I may have seen them and wasn’t feeling great so I thought I’ll respond later to only forget because surgery/radiation/chemo has made my chemo brain even worse than it was. I didn’t think that was possible. I don’t want this post to worry people more than they probably already are I just wanted to tell you where I have been and what I’ve been through and how I currently am doing.
I also want to take this moment to discuss something that I have just made the decision on. As all of you know I was looking forward to doing Tour De Pink. I appreciate all of your support and the donations go to a wonderful nonprofit organization that has helped me so much. When I initially signed up in March it was before I knew about my brain tumor. After my surgery I was still wanting to get back to training for it. I did a lot of indoor training and on “good” I would ride on the silver comet. However, I wasn’t really doing well. Then radiation began and I started doing even worse. The combination of surgery, chemo and radiation my fatigue level has increased to a point I haven’t experienced in my journey. I had several of my doctors say I shouldn’t do the ride but ultimately it had to be my decision. I made this decision after a breakdown a week and half ago talking to my mom. I knew I wasn’t physically and mentally able to do this ride. I feel I let a lot of people down most of all I feel like I let myself down. Another thing cancer has taken from me.
Surgery was June 12, 2019 We arrived at the hospital at 0630 there was confusion when we got there the several messages I received about where to go was not where they wanted me. The only not friendly person I came across was at this central registration. Which is not the normal for this hospital normally everyone I come across is friendly. Mom and I walked over to the Bobby Bailey tower and some friendly nurse took care of us and got me to my waiting room where I would change and get all my IVs and wait till I brought to each of my procedures. I went down to the stealth MRI I want to say around 0900. I did have my little freak out, it seems I need one. The radiography laughed because the woman right before me was the same way just needed that little outburst then was fine. It was a lot closer to my face this time. I know don’t open your eyes. So the nice woman took me out let me breath and that’s all I needed. I made sure the towel completely covered my eyes. It wasn’t as long as my first MRI and we began with contrast. I would like to see if I can get a copy of the image I am curious to see it. If I can I will put it up on the blog. After the scan I was brought back to my waiting room which is where I would be up till they brought me in to surgery.
My surgeon had a surgery prior to mine which is why mine was late getting started. He came into my room probably around 1100 and marked my head then explained they were resetting up the room for my surgery and they would be uploading my image and so forth and to expect to be heading that way in about 45 minutes to an hour. Honestly I wasn’t really nervous for the surgery I felt the worst part was the MRI.
Once they took me down to the operating room I waited in the hall outside OR 9 (a lucky number) I met with the anesthesiologist, Dr. Gullick’s PA and the OR Nurse as well. They asked me a slew of questions I’m sure I answered several times already. I always feel like they are trying to catch me in a lie. They aren’t I am just suspicious. I signed my consent for anesthesia again, they stuck something in my IV and then they took me into the operating room. This is around the time I asked if they drugged me I was starting to feel funny. Now is the time when you leave your nice warm bed and they put you on the cold silver slab. Those warm blankets they give you are amazing though. I immediately had an oxygen mask on my face and was being instructed to breath deeply and that it was just oxygen. This is around the time it gets fuzzy and I go to sleep. I’m thinking its not just oxygen, see why I’m suspicious. I woke up slightly and was told I was all done and I was being moved to the recovery room. It was like a split second and I was there so I’m guessing I was still a little out of it. The nurse there was very friendly and took good care of me. My immediate pain was in my forehead which I would later find a bandage on.This was apparently from the pins from the head harness I was in during surgery. I also had the normal throat hurting from the breathing tube. Just my immediate feeling was I didn’t feel as awful as I did post mastectomy with immediate reconstruction. That surgery I couldn’t move my entire torso. I could hear when the nurse called my mom so I made sure to wave and she told my mom. In recovery I was just trying to come out of anesthesia and see how much pain I was in. I know I was there for bit waiting for my room in ICU. I took several naps here. This is also around the time I realized I must have a catheter in and I have no idea how it got there and I didn’t know how long it was going to be staying with me. I remember being very thirsty and they didn’t give me water here. In fact it would be longer than my other surgeries before I got water.
Once I moved to ICU was the first time the pain started to intensify. I would later learn the movement of being moved makes me dizzy and out of it. This is completely normal. I got moved from my recovery bed to my ICU bed it’s very hard to just let them move you. Then I was hooked up to all the equipment. They gave me some morphine in my IV and a percocet. My mom and aunt joined me in my ICU not too long after that. I was talking and one of the most amazing things was how much my vision was improving. It was going back to how it was. It had been getting so bad with Fred I didn’t even realize how much if it hadn’t been for my peripheral vision while I was driving this past week. I was having a bad headache so they dimmed the lights and kept my curtain shut to minimize the lights. While mom was there I was told I was allowed to eat but I was on clear liquid. I guess this was better than nothing. They brought up a vegetable broth, apple and grape juices and I even got orange jello. Which was the best part. I was also getting water by this point. Mom stayed a little longer but I was getting morphine and going in and out of naps. They kept me on the morphine every few hours and it was about clockwork for my pain to jump from a 6 to 8 which the IV was good because it worked quickly. Throughout the night Gillian, my night nurse, who was amazing would be in every 2-3 hours. We had to do tests. I would say my name, date, where I was and squeeze hands and push my feet and also get a flashlight in my eyes to see my pupils. I run a low blood pressure and a few times it would drop below 80 and they would come in. I’m guessing this must sound an alarm at their desk area. It was past the initial part of the morphine so they were thinking this is how I usually am at night when I hit the deep sleep since it was consistent throughout the night.
Thursday June 13, 2019 The initial night and in the morning I was in the most pain. We switched over to the Percocet pills mid morning so I could adjust to going home with pain pills. Around 0530 I was taken down to get my CT if the brain. Now whenever they would move me was when I would get really dizzy and they said that was normal that kind of movement would bother me. The scan came back looking good. I got cleared back to solid foods that morning and they brought me a fruit plate for breakfast. I slept most of the morning. Dr. Gullick stopped by around 0900, I think. This is the first time I remember talking to him. I know I heard him in recovery but I was so in and out of it. He explained the tumor popped right out. It was actually very surprising to him, I guess they are usually mushy and fall apart. See Fred was ready for an eviction and took it like a champ. I am expecting pathology back sometime next week. On Thursday the 20th I get the staples out. He also told me I had to be here least 24 hours from surgery so he would be doing my discharge paperwork later that day. He also said one of the pins from the head harness made my forehead bleed which is why I had a bandage on my forehead and he removed it since it wasn’t something that needed to stay on. He was on his way to another surgery.
My mom returned to the hospital about 0930. I was in and out of sleep for most of the morning. She also had taken my phone home Wednesday night since there was no need for me to have it. It’s not like I could focus enough to send anything. Plus when I came from recovery they had shut my curtains and dimmed all the lights cause my headache was so light sensitive. Light was still bothering me on Thursday a lot which is probably why the phone screen was as well. I have been limiting my screen time a lot. I know I put a post up on all my Facebook and Instagram just letting everyone know I was recovering sometime that afternoon.
Most of Thursday I was in bed in ICU. They have you hooked up to everything so unless they come in and unhook me I am not going anywhere. Sometime that morning Dr. Gullick’s PA had come in while my mother was there. I inquired about when I would begin my blood thinners since I have a PVT in the vein going into my liver which was discovered when I was initially diagnosed with breast cancer. She told us I would be off thinners for at least 2 weeks. I had never been off them this long after surgery or at all since being diagnosed with the blood clot. This was the only time anyone spoke to us about them.
Around 1430 mom was freezing so she took a walk outside to warm up. While she was gone I got a visit from the PT nurses which for me to be released I had to go through PT. This was good. This was the first time I would be walking around more than to the restroom located in my room. They unhooked me and put a belt on me. In case I tried to make a quick get away, ok probably not. I walked all around the ICU outside my room it made a big circle. Then I had to do a grapevine walk. Which is some kind of walk where you cross your legs over each other from side to side and behind them as well. Surprisingly I did quite well. Since my doctor had been talking about releasing me straight from ICU vs going to another room etc… I also had to be able to go up and down stairs so we went into a stairwell to verify I could handle stairs. Now I didn’t make any record times on these tasks but I was my usual laughing self and getting through everything they told me to do. When I returned to the room one of these lovely nurses brought me a toothbrush, toothpaste, face wash etc so I could feel more human like. They also set me up in a chair (I was asked if I’d prefer this which I did) versus making me lay back down. I think being up helped a lot.
While I was in surgery they did put another IV in my left arm which I have lymph nodes removed on that side so I never stick or do any blood pressure on the left. I was even wearing the limp alert bracelet. This was surprising for me but they said it was done in case I was needing a blood transfusion however when the two PT nurses came they were concerned cause it had been swelling on that side and I explained all night it was hurting. This was probably the first time I had seen any real swelling from that arm. Mom returned not too long after and met the girls then they went on their way telling me I passed PT and would put that on my paperwork so it wouldn’t delay the releasing of me once the doctor put the orders in. Dr. Gullick returned not too long after we chatted a bit more and he said he was starting my discharge paperwork. He also said to make the appointment to have the staples removed for next Thursday and if he was booked to explain to the receptionist he would be able to fit me in since it wouldn’t take that long. As happy as I am about the removal of the staples I’m also not looking forward to it. Hopefully it feels better than when they removed the drains from my mastectomy.
About 1630 mom headed out to get the car and I had all my IVs removed most of the weird stickers they stick all over your body, it seems on purpose. I got my ride out in a wheelchair and into the car. Now the car ride was something else. Moving even in the wheelchair I felt like I was going so fast, I wasn’t, I had a great get away driver named Kenneth he was awesome. Motion definitely was an issue. When we were driving mom had to take the speed humps very slow cause it was messing with me. We made one quick stop since it was on the way to pick up Hooch from daycare who was so happy to see me but so exhausted from playing all day. Which was the goal. Once we got home I was one the couch and mom went out and picked up all my prescriptions. It’s weird to think I was having brain surgery on Wednesday and now I was home Thursday night.
Friday June 14, 2019 The first night was an adjustment. I was medicated but I had to force myself on my left side when I got into my bed. I am a right side sleeper. I did wake up with numbness on my left arm which I had not been having since beginning the steroids once Fred was discovered. I did make sure to note this and will tell the surgeon if it continues. We have to make sure to document any of the neurological issues and report them. I began the anti seizure medication in the hospital and I take one in the morning and one in the evening. I also was instructed when to start tapering off the steroids. My surgeon is one who likes to try to get you off them quickly. So by Monday I would be down to 2 pills and Tuesday I would be off of them. Hopefully the lovely steroid weight will disappear as quickly. Ha Ha I somehow doubt this. I was in a fog most of the day which was most likely from anesthesia and the pain medication as well. I did try to respond to everyone’s messages via text. I am still not up for phone conversations I did have to talk to the hospital and a doctor’s office which was very challenging I was finding it hard to focus on what I needed to say and what was being said to me. Which is why I haven’t been up for phone calls yet. Now texts you may find me start and forget to finish but I am improving. Mom and Amy have been really good with updating everyone when they are asked. Friday I will say I don’t remember a whole lot. I was on the front porch in the morning sitting and then on the couch. I was able to walk around the house slowly without too many issues. I was dizzy if I attempted to go to fast or turn my head too fast. The dogs would pace me and follow me everywhere. I took my pain medication regularly as prescribed and was still getting consistent headaches. All completely normal.
Saturday June 15, 2019 Each day I feel like I am improving. I didn’t take my pain medication till mid morning. I used tylenol in the morning since the staples were bothering me a lot. In case you haven’t realized yet I don’t like the staples however, I was told they are better than sutures so I will just have to take my surgeon’s word on that one. Amy came over around 1300 to give mom a break and she needed it. She was able to lay down and relax while we sat on the porch. I don’t know how much I kept up with the conversations but one on one I seem to be alright. I was glad mom got to relax some, she had a pretty stressful week and I think it finally was all hitting her. It was also very good for me as well so I was happy she asked if she could come by for a visit.
Sunday June 16, 2019 I was more tired today and my head hurt more as well. I didn’t feel like writing in the mornings which is what I had been doing to keep up with the documentation. I usually just sit on the front porch and write some each morning. I do love my front porch it’s very peaceful in the mornings before it gets too hot and humid later.
Monday June 17, 2019 Today we went to the grocery store so I could walk around. I am suppose to be walking more and its easier in an air conditioned space so we went to publix and I leaned on the cart and we went up and down the aisles. Riding in the car is not the most fun. I get dizzy especially if I move my head too fast. Obviously I am still not allowed to drive.
Tuesday June 18, 2019 Today I walked around the block with Dino and my mom after Hooch was dropped off at daycare. We also ran to target today which is where I got my “exercise” in where I got a cart and we walked through the store.
Wednesday June 19, 2019 Today was the first day with no steroids. I was also very exhausted all day. I d0 the best in the morning and then in the afternoons I have to take a nap or lay down. I fell asleep so hard in the afternoon I didn’t even hear Dino bark when someone came to the door to drop off a delivery. My mom was very shocked when I didn’t wake up.
Thursday June 20, 2019 Today I went back to Dr. Gullick’s office and had a post surgery visit. He told me everything I had been dealing with was normal and to be expected. My energy being higher in the morning is normal and afternoons it would drop off. Also if I’m tired I am to sleep. The headaches I was getting is normal and expected. The incision looked well and I got my staples removed. The removal of the staples were not as bad as I had expected, given I did take a pain pill prior to coming. I learned when the drains were removed after my mastectomy. It would kind of just pinch a little if it caught the hair a certain way but not too painful. I think a few of them bled a little.
I did get the pathology back from the tumor and it is my left breast cancer; PR negative ER negative and HER2 positive and grade 3. The grade is how aggressive it is. Of the two cancers this was the one we expected it to be. Although I was hoping for a benign tumor it could always be worse.
Friday June 21, 2019 I woke with the worst headache pain. I hadn’t been in this much pain since the hospital. I woke up around 0600 and took a pain pill and my kepper (anti-seizure medicine) I fell back asleep and was in and out of consciousness for the next few hours and the migraine didn’t improve. This was the first day I started running a fever and it was 101.3 this morning. I am not sure if it was a migraine but the amount of pain I was in was about the equivalent and the only thing I could compare it to. I think at one point I texted my mom to have her get the dogs since they wouldn’t leave my side but I knew they needed to eat. I think around 1100 I managed to move out to the couch and took another pain pill. The first pill had no effect and the second one really didn’t either. By noon I was coming out of it and I had the “hangover migraine” feeling. I also had 3 aunts coming down to visit with me. These are my mom’s sisters. Today I had another doctors appointment which was with Dr. Simpson in the afternoon. They were driving us there. My aunt Tara came into the appointment with me while the others stayed in the main waiting room. Dr. Simpson came in and we discussed the results. Assuming that Dr. Benton (radiation oncologist) approves I will begin receiving my chemo (Kadcyla) and my Lupron on June 28 and due to the fact that my chemo does not penetrate the blood/brain barrier I will be receiving a brain MRI every 4-6 months to monitor the brain and make sure there are no more brain metastasis(mets) We also discussed the headache from the morning and I told him my pain level was a 10 which I have a high pain tolerance for him to hear this was a concern for him. He did tell me I could take more than one pain pill at a time and the timing between them was set up as a range that sometimes I may need to take them closer together and this was one of those situations. This was probably the time I should have mentioned to Dr. Simpson I was still off the blood thinners but give me a break I did just have brain surgery and didn’t think of it.
Saturday June 22, 2019 Today I was better than yesterday but really anything was an improvement from Friday. I was still running a fever but it was lower only about 100.4 I took some Tylenol and was moving around more. I knew my aunts would be coming back down for a lunch visit today since they were all flying back home the next day. Late afternoon I started getting my usual tired and was most likely sound asleep on the couch. Today when I took my nightly medicines I added back my Xarelto I honestly was starting to get nervous about being off it and started getting this abdominal pain that was very close to the original pain when I was first told I had a blood clot.
Sunday June 23, 2019 and Monday June 24, 2019 I am going to lump these two days together because they are both a blur. I ran a fever Sunday of 100.4 pretty much all day. I was on the couch with an ice pack and I swapped through the day between Tylenol and my pain pills. I did call Dr. Gullick’s office this day and when he returned my call he honestly didn’t seem that concerned. He said since it was a low grade fever he didn’t know what it could be. Monday was even worse my fever was all day and it reached 101 as a high for that day I was also having a lot of upper abdominal pain. This is when it made me start thinking it could be related to my blood clot. I didn’t even get out of bed until well into the afternoon. I just kept an ice pack on my head. Sometime Monday night into Tuesday my fever finally broke and that made a huge difference.
This was the first two weeks of recovery. This was the easiest way for me to update everyone. Writing has been good for me. I know I still have been very quiet on social media and through texts. I am not quite back to myself. I get overwhelmed easy and sometimes I begin to respond and get distracted.
As I finish this up it’s now Tuesday July 2, 2019 yesterday (July 1, 2019) I had chemo because of some confusion last Friday (June 28, 2019) it wasn’t ready so all I had was my monthly Lupron injection. Anytime chemo is delayed I won’t complain too much. I really enjoyed my “chemo vacation” even if it was for brain surgery. Today we went and saw Dr. Benton, my radiation oncologist. He told me I would be going to their Snellville, Ga location and working with a colleague of his Dr. Tracy McElveen, who would be doing my treatment at that facility. He of course would be involved as well. My treatment will be SRS (stereotactic radiosurgery) and that facility has the best equipment for this treatment. I should be hearing later this week from Dr. Benton once he talks with Dr. McElveen and he will set up all the appointments. He also will be talking to Dr. Simpson (my oncologist) inquire about another treatment in addition to my current chemo. This would penetrate the blood/brain barrier unlike my chemo.
I feel today we got some more questions answered and moving toward the next stage of this journey. As I learn more I will keep everyone updated. I will apologize for any spelling or grammar errors. I tried to correct what I saw but you know I did just have brain surgery.
I felt it was a good time to do a short update post. Tomorrow June 12, 2019 I will be going in for brain surgery. It wasn’t what we had originally planned for this week. Mom and I were suppose to be on vacation in Florida. I guess this will be just as fun, right?! Ha Ha
Today was a rough day, I didn’t sleep well the night before and just felt off all day. The headaches have been getting bad again but no worries since Fred will be getting a permanent vacation tomorrow.
Today was my last workout until I am cleared back. I will miss my morning peloton digital classes and street parking WODs. I also have officially put my squat everyday on hold. I made it to 162 days. Not the 500 days I was aiming for but I will begin again and hit that goal. I did receive some exciting news that I will be receiving a survivor bike for my YSC 200 mile breast cancer ride in October. This will give me the motivation to get back to training when this is all over.
The plan for tomorrow is as follows. I will be heading into the hospital at 0630 to central registration to begin the stealth MRI. This will be the 3D image of my brain that he will use during surgery. Now we let’s see if I freak out in the MRI again. At 1000 is the actual time of surgery. The surgery itself should be about an hour. Then I will be staying the night in the ICU. On Thursday I will be having another brain scan and if everything checks out I will be going home that day. It’s really amazing to think you can have brain surgery and go home the next day. Modern medicine is fascinating.
I’m in a very good place with everything and I feel everything will go smoothly. I know I have a huge support system going in with me. Thank you for everyones support and love. I love you all!
My first meeting with Dr. Simpson I had explained about some pain I was having when I was breathing. I also informed him how I had this pain before in fact it sent me to the hospital the Christmas eve prior. Since I was having a very similar pain and being diagnosed with cancer I believed these weren’t a coincidence. By telling him this it made him change the scan he requested. Instead of getting an MRI, I was now getting a full CT. To me it was just a scan I really had no idea why the change.
September 6, 2017 I arrived at Dekalb Imaging to get my CT scan followed by a heart echo. At the time of the CT I believed it was to tell if the cancers had spread to any other body parts. The heart echo was to determine if my heart was strong enough to handle my medications in my chemo cocktail.
September 7, 2017 I had surgery for my port placement. The port is basically a way to infuse the chemotherapy drugs, take blood or other medication without the multiple needle sticks. It reduces the risk for muscle and tissue damage. It made sense doing a port but at the same time I was very weirded out by it, and honestly, I still am. The surgery itself wasn’t bad at all. It felt like it took seconds to be honest, I’ve never had surgery before so perhaps this was just how things work. The surgeon left it accessed since I was going to be receiving chemo the next day. Yes, everything moved that fast. I still wasn’t sure how the port worked or what it would look like without this bandage on. All I could see was this big bandage on my chest. What I mean by accessed, which I understand now but didn’t then, they had the needle stick that attach to the tube that would be later connected to my IV drip. Obviously I’m not a medical professional so I don’t really know the fancy terms this is my way of describing it. I was told the cancer center would disconnect it after chemo.
So remember how Dr. Simpson changed his mind on the type of scan after I told him about the pain? Shortly after I got home from surgery I received a call from the hospital saying I needed this medication (Lovenox) and I had to start it tonight. Now, I had just had surgery my aunt had dropped me off and was on her way home. I am still out of it and I’m telling the lady on the phone I had no way to come pick this medication up. She was like, oh no someone will be bringing this medication to your house. First of all I didn’t even know that was a thing. She goes on how I have to inject this into my lower stomach every 12 hours and to begin tonight. Looking back I am sure she explained what the medication for and why I had to take it. What I would find out the next day was I had a blood clot in the vein going into my liver. These shots were blood thinners.
My original treatment plan consists of four chemo drugs infused every three weeks for a total of six treatments. In a previous post I discussed the drugs I would be getting and my hormone properties of each of my cancers so I will not go back into that.
September 8, 2017 this was the day I feel it truly began. The reality of cancer and how my life would never be the same. I was now a cancer patient.
As I arrived for my first treatment I had no idea what to expect and I was a mix of feelings. Part of me was anxious mostly cause I didn’t know what to expect and also I was just ready to begin.
The first treat was very long, it ended up being an 10-hour day from getting there and having them draw my blood, meeting with Kelli the PA and then going into the infusion room. My infusion center isn’t big maybe 15-20 chairs which are recliners. They have pillows and warm blankets available if you want them. Once they got the all clear on my bloodwork they start with a steroid bag which is about a 20 minute infusion, next up is the Benadryl bag which is also about 20 minutes followed by an anti-nausea bag also 20 minutes. These are precautionary to prevent any allergic reactions. The first infusion is so long because the chemo drugs are infused at a slower rate and then they wait a certain amount of time after to make sure there are no allergic reactions to it. What comes next is once the onsite pharmacy is done mixing your drugs they are brought out to the nurses’ station. Two nurses come over to the chair. One is holding the bin with all your chemo drugs in it and the other has my chart. The one holding the chart looks at my wristband while having me tell her my name and birthdate, then the other nurse reads each drug and the rate of infusion to the chart nurse who verifies each drug. Then the chemo drugs start. It wasn’t like I thought. The Benadryl made me sleepy so I may have napped a few times, the drugs themselves I didn’t notice much except one of them toward the end of the bag made me wicked hot. After they were all through they put my Neulasta that will disperse approximately 27 hours later. This was to help boost my white blood cells post chemo. Then I was on my way home.
I felt alright the next day in fact I went to lunch with one of my friends. That night was when the Neulasta shot was dispersed. I had to reach out to my neighbors to help me verify it was empty since I couldn’t see whether the line was on empty so I could remove it from my arm. It was that evening that I started feeling off. I went to bed and when I woke up Sunday morning I felt like I had the flu. I did manage to get up, let my dogs out and feed them. I moved from my bedroom to the couch and I just slept. I had never been so tired in my life. Some of what else I felt was very much like the flu, my body ached, I had a low grade fever, my throat was in so much pain and my hair hurt, yes hurt no other way to describe it. My dogs are the best they curled up next to me and my oldest would nudge me awake when they had to go outside. They were also great when I would get up to go to the bathroom, they would walk me there and then walk me back to the couch. I barely drank anything this day and did not eat anything. Sometime Sunday night into Monday morning my fever broke and that helped a lot. Now by no means was I functioning this day, however, I was able to respond to messages I received Sunday. I still was having problems with my throat and mouth developing sores throughout it. I did manage to force 40 ounces of water down that day. Now remember I was use to drinking at least a gallon of water a day so this was a big change for me. I also ate that day. I made myself a grilled cheese, something I had no eaten in forever. Actually through all of this I would begin to eat things I hadn’t eaten since I was a kid. Maybe it was a comfort thing or just easy to eat or I could actually taste it. I still slept most of Monday away. On Tuesday I would attempt to go to work but that was short lived and went home shortly after arriving. Tuesday’s feeling would be best described as being hungover without actually having a fun the night before. I was still having a lot of mouth/throat pain so I was barely eating and drinking. I lost 11 pounds that week. When I got to the doctors on Friday they prescribed me something for my mouth since I had developed something call thrush, which is quite painful and thankfully the only time I ever got it. I believe this was the reason I lost so much weight that week. When it cleared up I kept eating grilled cheese and mashed potatoes since that’s what I was craving. I put the weight back on. Two weeks after my treatment I finally got back to doing my cardio again, which consists of my spin bike. This treatment would be the longest I went before getting back into my cardio routine. I also would travel on one more work trip after this treatment before deciding I would not travel until chemo was finished in December 2017. Cancer was beginning its takeover of my life.
It’s time for an update to let everyone know where I have been. I have actually been in the middle of a blog post for over a month now. It’s called Hell Week and I couldn’t quite figure out why I got to the point where I just seemed to be blocked. I believe it is because of Fred.
Let’s start from the beginning or at least what I feel is the beginning. Around December/January my headaches changed. They just felt different. If you guys remember there was a lot of stress going on around that time. There was a shutdown, I found myself furloughed and my tumor marker spiked. It’s not unreasonable to believe perhaps that’s why my headaches (which are a side effect of my chemo drug) were getting worse.
I kept complaining to my oncologist about how they felt different. It just didn’t seem the same. In June 2018, I did have a brain CT because of headaches and we decided it was side effects from radiation and my chemo drug. The scan didn’t show anything. I will talk about this later which is why I am mentioning it.
As I was saying I found myself complaining constantly. I thought I was just being over dramatic at one point. However, that was not the case. I am very happy I continued to complain. Throughout my journey I have learned you have to be your own advocate. That is why I do a lot of reading, research and I even learned how to read my own pathology reports. Finally in March my doctor said he believed my headaches were migraines from chemo and sent me to a neurologist. He told me he would be able to prescribe me something to help alleviate them. The beginning of April I met with Dr. Olson. I explained how I was having intense headaches and how they had changed, I also mentioned how my chemo brain was getting worse and what I believed was neuropathy from chemo had been more frequent where I was waking up completely numb in my arms and hands more so on the left. He believed me to have migraines as a side effect and decided to set me up for a nerve test to see if my neuropathy was carpel tunnel instead. He did decide to send me to get a brain MRI as well since this time I didn’t have the tissue expanders in anymore so I was able to get a MRI this time. He also informed me this was just checking a box and was not expecting anything to show up.
April 26, 2019 I went to chemo that morning and met with my doctor we discussed how I was having the brain MRI that afternoon and he told me it was going to be fine. I do have to admit I did freak out before the MRI. Apparently cancer treatment has made me claustrophobic who knew that could even happen. I had a feeling this would happen since I had a similar experience before my mastectomy. Cancer the gift that keeps on giving. I was doing fine until I heard the clicks. I told myself don’t open your eyes. So of course I opened my eyes and when I saw the cage over my head I was like nope take it off!! After a few moments I regrouped the nurse and the radiographer assured me it was alright and calmed me down. The nurse suggested placing a towel over my eyes. Apparently I am like a bird and it worked. This was not my shining moment but I assume they see this a lot.
April 29, 2019 I was driving to Jersey for a work trip like I always do listening to my favorite podcast, My Favorite Murder (check it out if you like true crime) and my phone rings. I see its my oncologist office and was like its probably a reminder for my next appointment and since I was driving I let it go to voicemail. For whatever reason I got a feeling I should listen to the voicemail. The message said the doctor needed to see me that afternoon. I was like what? They ended up calling again and I picked up. It was another scheduler that didn’t realize I had already been called. I told her I was on the road almost to New Jersey and there was no way for me to get there today. She was like I’m gonna email Kelli (Dr. Simpson’s PA) and Dr. Simpson and see if one of them can call me this afternoon instead. Already I was like this is weird. However, whenever I have chemo I get bloodwork done and some of it doesn’t come back till Monday so maybe it was that. I called my mom and she was like you can’t answer that phone call till you get to Jersey. Luckily the phone didn’t ring until I got to hotel and was settling in. However, it wasn’t the phone call I had expected. Once I was checked in to the hotel I was unloading the car and my phone rang with an Atlanta area code. I picked it up and it was someone from the neurologist’s office.
The neurologist office was much more up front and clear about what actually was going on. My brain MRI showed a small brain tumor in the right rear side of my brain and they were referring me to Dr. Gullick who is a neurosurgeon. She informed me their office was going to be calling me shortly to set up the appointment to discuss my options and what was next.
This was not how I expected my Monday to go. Dr. Gullick’s office was quick to call and I had an appointment for me on Tuesday May 7. I had to cut my Jersey trip short and return to Atlanta on May 3.
May 7, 2019 I found myself at a neurosurgeon’s office. Thankfully I was not alone and I brought my friend Amy with me. She was in charge of taking notes since my chemo brain is awful. I met Dr. Gullick and we went through that was happening. I had a headache at the time which was great because its so hard to describe exactly how the headache is when its not there. Our bodies are so great about making you forget how pain feels after the trauma is over. I was pointing to the worst part of pain and he was like right there? I was like yes this is where it hurts the most. He told me I was literally pointing to my tumor. Meet Fred. The image below is reversed so the small white mass is my tumor(Fred) and its located on the right rear of my head or in my occipital lobe. If you look at the dark shading around the mass that is the brain swelling.
He told me the tumor was too small to be causing all the symptoms that most likely the brain swelling was making everything worse. All these months of me saying words are hard today (chemo brain) and the intense headaches was starting to make sense. I did ask about me having a brain CT in June 2018, a PET scan in August 2018 and just in February 2019 and how this had been missed. He assured for the brain CT if the tumor was there it would have been too small to show up on any scan. As for the two PET scans apparently it’s not routine for them to scan the brain during it. This was frustrating for me to hear since my left breast cancer the HER2 positive side is one of the ones that likes to jump to the brain.
He went into detail about the different options available to me. Due to the size the gamma knife is an option that would be able to get it all. However, when you radiate something it’s gone and I would not know what it is. I was also told it was highly unlikely that i developed a third primary tumor. For those that aren’t aware I was diagnosed with two different breast cancers which means I already had two primary tumors. Basically he was telling me this was most likely one of my breast cancers. The only way to know for sure is to actually remove it and test it which brings us to the surgical option. After going into a more detailed discussion I was told he was going to be in touch with Dr. Benton and Dr. Simpson and we would all be on the same page when I make my decision.
May 9, 2019 I met with Dr. Benton, my radiation oncologist. He is one of my favorite doctors. The kind that just goes the extra mile for his patients. I will say it was hard going back because as I filled out my paperwork for the appointment I looked up and saw the bell I rang when I finished all my radiation treatments in May of 2018. Which is the pic below.
Dr. Benton went into details about what the radiation would be like if the pathology came back malignant. If I am needing radiation it would be one, two or three treatments. Which compared to my previous 30 treatments for my chest that is nothing. Given its on my brain. He also told me if it is a brain metastasis its the best case scenario since it’s a single site and we will be able to get it with surgery and radiation. Then he asked me if I was on steroids yet. I was like no why would I be? He was like for the brain swelling and stepped out of the room came back with his prescription pad saying you start this tonight and take one every 8 hours. He couldn’t believe nobody had started me on them yet. After leaving there I was feeling much better about everything since a plan was coming together.
The steroids were key even with the crappy weight gain side effects from them they made my pain level decrease. I really didn’t realize how much pain I was truly in. I am one of those people with a high pain tolerance. I just knew I was taking a lot of ibuprofen.
May 10, 2019 I met with my oncologist Dr. Simpson the last puzzle piece. We were discussing that I wanted surgery and how the chemo I’m on doesn’t access the blood/brain barrier so although my body is under control something could have broken off when it was in my lymph nodes prior to radiation and beginning this chemo drug. The plan will be if it’s malignant to continue with the chemo drug I’m on and just monitor the brain to make sure nothing new pops up.
It took me a couple weeks to get back into Dr. Gullick’s office to go over the procedure, sign consent and actually get the surgery scheduled. He was under the impression I wanted to do the gamma knife which is where the confusion came from. I have decided on surgery because I feel I need to know exactly what the tumor is. In my mind it’s benign until they tell me otherwise.
The surgery itself is pretty straight forward. I will go in to the hospital they will do a certain MRI (maybe stealth I’m not sure but this word was used) of the brain that does a detail and fine cut 3D model of it. My tumor is small so the incision will be a small S like shape. The surgery itself should be about an hour. Once I am under they will put my head into a harness to stabilize it. I did ask if they wake me back up while they are in there (I’ve seen too many movies haha) they will keep me asleep they prefer it when they can because the slightest movement can change so much. After I will stay a night in the ICU and the next day they will do another brain scan to see how everything looks. If the scan is good and I am recovering with no complications I will be released home. It’s pretty amazing how you can go in for brain surgery and go home the next day.
My surgery date is scheduled for June 12, 2019
I think this is why I haven’t been able to write my previous posts I think I knew I wanted to address this but I didn’t have all the information yet. I want everyone to know I am in a very good place. I believe we are set to walk certain paths in life although we may not always be able to see the reason why at the time. Perhaps here I may help someone who comes across this blog that finds them in a similar situation. You never know who is watching and looking toward your strengths. I have an amazing support system. I am truly blessed with how many of you love me and have reached out and supported me through all of this. I can not thank you enough. Your love and support has been absolutely humbling to me and I don’t even have words to express my gratitude.
This past weekend I attended my first Young Survivor Coalition(YSC) Summit in Austin, TX. This organization is for young women facing a breast cancer diagnosis. Every year they hold a conference with speakers, breakout sessions that address the needs of young women with breast cancer and also for their co-survivors as well. If you are interested in learning more about the organization you can check out their page. http://www.youngsurvival.org
I had no idea what to expect. I also had no idea how much I needed this conference. I met so many amazing women and made friendships that are going to last a lifetime. It was the first time in about 19 months where I felt almost normal. I met women who understood what I currently am going through and I got an idea of what challenges I may face after active cancer treatment finishes.
One of the breakout sessions I went to was the fear of the unknown. It addressed recognizing anxiety and how to face it. There was also discussions about PTSD from a cancer diagnosis and the treatment that follows it. The amount of support and help available to us was nothing short of amazing. I can not wait until next year’s summit.
Now I find myself thrown back into reality. The reality of countless doctors appointments and of course chemo(where I am right now). This was a hard week back. I found myself crashing in the afternoons pretty hard. Yesterday and today were just what I call bad cancer days where nothing seems to be easy. Usually week 3 is my “good” week but I think with the excitement from the weekend my body was just exhausted.
One of the things to come out of the summit was me deciding to challenge myself and sign up for the YSC Tour De Pink. It’s a 200 mile, 3-day charity bike ride for breast cancer. I have committed to raising $3000 for the Young Survivor Coalition. YSC is a nonprofit organization committed to help young women, like myself, who have been diagnosed with breast cancer. In my battle with cancer I have been very grateful for this organization. Tour De Pink will be my way of giving back and getting involved. It will be one month after my last chemo infusion which is a big milestone for me. If you are able to donate please go check out my link I will post below. After making a donation send me your address I will send you a little thank you gift.
Nothing quite goes to plan these days. I was suppose to finish this post on March 15 and its now April 1. I am hoping to be a little more consistent with my posts. Maybe that will go on my April list of goals. I will also being doing another post going into more detail about Tour De Pink.
Overall the squats have been going well. I finished up day 41 today with front squats. I’m not trying to increase weight as rapidly as I did before mostly this is due to chemo. It already is a struggle doing these daily. I don’t want to burn myself out. I have hit my first goal of 135 yesterday on back squat. Next goal will be 150. I hope everyone is having a great weekend.
As I write this post I am currently receiving chemo. The cancer care team goes beyond just the doctors. There are so many amazing people in this facility that make you forget what’s really going on, even if it’s only for a minute. We were just laughing so hard at something and I just want to thank them for always making sure I smile through this.
After receiving the call from Dr. Rashid about the lymph nodes everything started happening very quickly. On Friday August 25, 2017 I met Dr. Simpson, my oncologist. I never thought at the age of 36 I would have an oncologist or a cancer care team. My aunt came with me for this visit. I had so many questions written down because it was this time with all the information being thrown at me I was beginning to forget things. It was overwhelming to say the least.
Dr. Simpson began explaining my lab results and explained about having two separate cancers. Basically he told me it’s like lightning striking the same place twice. Not unheard of but not common. We discussed my treatment which included starting chemotherapy right away to stop the left breast cancer from growing and spreading more. I would be receiving 6 treatments of a 4 drug cocktail. The cocktail was Taxotere, Carboplatin, Herceptin and Perjeta.
This entire process has taught me to see the positive in all situations. The positive I took away from this appointment was I was encouraged to stay active. Being active during treatment is actually beneficial to healing. I was excited to know I wouldn’t be restricted in the gym. However, I was aware I would not be training like I had been training for the past several years. At this time I was not aware how much lifting would be impacted.
The following week I was in Jersey when Dr. Simpson called to give me the official biopsy results. My left breast and lymph nodes were grade 3 HER2 positive, ER negative and PR negative. The right breast was grade 2 ER positive, PR positive and HER2 negative. The right was not as advanced. The left was aggressive and more advanced. I wouldn’t learn more about the pathology until my surgery in February 2018 and that’s when I will discuss it in details.
The next appointment was Friday September 1, 2017; I didn’t take anyone with me because it was my chemotherapy education class I figured this wouldn’t be bad. I was wrong. This was the first appointment that made me break down. It consisted of reviewing each drug and the numerous side effects. It was basically the worst of the worst. I was now about to start poisoning my body I fought so hard to get healthy, hoping these drugs kill the cancer cells before it kills me. It was the most eye opening part of the cancer world. The one I had the hardest with was the damage is could do to my heart. Due to the risk on the heart I would be getting a heart echo every 3 months to monitor the heart health.
Overall I managed to keep it together until I got into my car. That is when I broke down. I guess I truly hadn’t let myself absorbed all the changes my life was about to take. I remember sending my mother a text saying “I don’t want to do this; it could kill me”.
This post took longer to finish than I expected initially. My next post on my journey will be “Hell Week” when everything officialy begins.
The following Tuesday August 22, 2017 I had a follow up appointment with Dr. Rashid to discuss the results. All the results were in except the lymph node biopsy. My aunt Judy was with me for support.
As we waited in the exam room Dr. Rashid came in and informed both breast biopsies came back malignant. Malignant means cancer for those that don’t know. She also told me they were different cancers, both breast cancer but different pathologies. Basically it meant I have 2 cancers. My oncologist would later go into detail of this. She gave us a moment and stepped out of the room.
I was in shock, I cried and I was very grateful Judy was with me. I remember her telling me I didn’t cry enough. I couldn’t, I had to figure out the plan and how to not have cancer. I had just turned 36 two months prior, I wasn’t ready to hear you, hey you have cancer. The truth is 1 in 8 women will get breast cancer. Please check yourself, I found my tumor which led me to discover I had another cancer developing in my right breast. That mass I wouldn’t have felt until it was more advanced. I will get into the diagnosis in a later post.
Dr. Rashid came back into the room to see how I was. She assured me that I was going to beat this and thrive on the other side. She went into surgery options, explaining the next step was meeting with my oncologist, who she would refer me to. The first words I said was are you going to cut my pectoral muscle?. Its amazing what goes through your head when you’re told you have cancer. Well that was my first thought. I was straight forward about wanting a double mastectomy also known as a bi-lateral mastectomy. I am stating that because that is how I refer to it today so I don’t want any confusion. She also explained that depending on my oncologist, each proceed differently. Some say chemotherapy first and surgery second or surgery first and then chemotherapy. They will look at the pathology of the biopsy and explain which way they feel is best and why. Her explaining that to me I was prepared for the meeting with my oncologist.
I want to touch on something and I think this is a good place for it. This is more for anyone who finds themselves in my situation. There are several surgical options out there. Lumpectomy, single mastectomy and bi-lateral mastectomy. You decide what is best for you. You listen to your doctors they are there to help you decide. You may even have people in your life saying no this is best or don’t do that. What you decide is you ultimately your decision. I decided a bi-lateral mastectomy was best for me since I had 2 cancers one in each breast and I just wanted them gone. I literally felt betrayed by them, is the best way to describe it. It was a long 6 months with them before I had my surgery.
In case you weren’t paying attention above it was two days later I received the phone call about the lymph node biopsy. I remember because I was driving home from work when I got the call. I pulled over into this business parking lot probably less than a mile from work. Every time I see this parking lot I remember this call. It was Dr. Rashid and she told me the biopsy showed malignant cells were present in my lymph nodes. One of things I have told myself through all of this and I still say it to myself, it could always be worse. It helps me keep things in perspective.
The next post in this section will be meeting my oncologist, my diagnosis and expected treatment.
August 17, 2017 I found myself sitting in the waiting room of my breast surgeon’s office. I never thought I would ever have a breast surgeon let alone knew why one would need one.
This appointment I made prior to my mammogram because that was my OBGYN office’s instructions. I really had no idea what this appointment was going to be like. Was there going to be a biopsy? Was it a meet and greet? Do we discuss the mammogram? I really didn’t know what to expect. However, I did not come to this appointment alone. Thankfully, I had my aunt Judy with me.
It began with me meeting Dr. Rashid, who is an amazing human being. She is one of my favorite doctors. This appointment turned to an all day event. She had already received my mammogram results and then did physical exam. She determined I needed a biopsy right away. If she couldn’t get me in the hospital that day for both biopsies, she would perform the one on the left breast in the office.
The mammogram and ultrasound results showed the mass in the left breast and under the left arm would require an ultrasound guided needle biopsy. The right breast would need a mammogram guided biopsy or stereotactic. Now prior to this appointment I had been researching as much information as possible about biopsies and what to expect.
She was able to get me in the hospital to have both procedures done that afternoon. This made me happy because I really wanted answers at this point.
The first procedure was the left breast. They injected some local anesthesia (I was awake but my breast and underarm was numb) They got several good samples from both the mass in the breast and the effect lymph nodes.
The second procedure was why they needed the hospital. I’m going to describe this from someone who has no medical background. I go into this room, mind you I’m already not feeling great from the previous procedure. I’m greeted by the technician thats going to be doing the procedure along with Dr. Rashid. She was another amazing person, she stayed late to perform this procedure. I found this out later when it was all done her daughter was having surgery and she stayed to make sure I got this biopsy done that day. I have met some remarkable people along this journey.
Now back to the procedure itself. In this room was a table with a hole in it. I was instructed to get on the table and the right breast went through the hole. I am not making this up, this is an actual procedure. This was a lot harder than the previous one because once she found the spots using the mammogram machine that was under the table I couldn’t move. Of course it wasn’t a comfortable position that they wanted me to hold for what seemed like forever (I’m being slightly dramatic). She made marks on my skin of areas for Dr.Rashid. After she was set up with the images, Dr. Rashid came in, I was given more local anesthesia and the procedure was done.I want to say while she was doing the biopsy they did take images as we went along but its hard to say because I didn’t have a good view.
On the drive home my aunt asked if I needed her to come to the follow up appointment on Tuesday. I remember being out of it and saying no I should be ok unless they tell me I have cancer then maybe not. She informed me she was coming with. Judy, thank you so much for doing that.