Scanxiety is what most cancer patients say when referring to anxiety associated with scans.
Metastatic breast cancer means you live life a few months at a time. What do I mean by that? Every 3-4 months my oncologist orders new scans. I get two; a PET scan and a brain MRI. This is when we look at how my body is responding to my current treatment and determine my status. The goal is to be stable, meaning my current drug is working and nothing changes with my treatment plan. However, leading up to the scans my mind plays so many scenarios in my mind. Every pain, every headache makes one wonder is this the dreaded progression?
I just had my regularly scheduled PET scan and Brain MRI on January 22, 2021. I was a told at chemo on January 29, 2021 that they were good. A huge relief is off my shoulders for another few months. The even better news, well kinda depending on how you look at things, doc is concerned about toxicity. If you are new here or maybe you just don’t really know here’s a short recap. I have been on chemotherapy since September 2017 and only getting a “chemo vacation” for surgeries. My initial chemo was a cocktail that had 4 drugs in total which was only for 6 infusions(one of these drugs caused my hair loss, not all chemo drugs cause hair loss) and I was suppose to be done after that but my left cancer had other plans. After my mastectomy I began my current drug Kadcyla and we have been together since March 2018.
What is is toxicity you ask? This is my take on it; chemotherapy is basically poison which builds up in your body and can have adverse effects on your body. By adverse effects I’m not just talking about my physical side effects but the effects that are happening internally. This is why monitoring my bloodwork, my heart echos every 3 months and my scans are so important they paint a complete picture. I have been struggling really bad lately with treatment. Let’s just say I have more bad days than good days. After my doc told me about my scans he went into toxicity. The current plan is to still get the same amount of Kadcyla each infusion but push back the time in between infusions from 4 weeks to 5 weeks. Now this is the second time we have increased the time between treatments it was originally infusions every 3 weeks but after brain radiation my body needed more time. I still have to get my Lupron(or Zoladex since Lupron has been out of stock) injection every 4 weeks as the long term treatment for my right cancer, which hopefully won’t be for too much longer but more on that later. We discussed a lot of the issues I am having and how they have been getting progressively worse. Will this help alleviate some of the side effects, honestly I don’t know but I hope so. As for now I won’t have to worry about scans for another few months.
As 2020 comes to an end ask yourself what has this year done for you. Most will say this was the worst year of their life but was it really? Did you learn anything about yourself? Are you happy with who you are? Did you make any changes to love yourself more? Did you learn what really matters in your life or maybe who really matters? These are just questions to consider.
For me 2020 wasn’t what I had envisioned but it was exactly what I needed. I was not able to go to Ireland like we had planned. However, I did learn that chemo is kicking my ass and I need to listen to my body more. I learned it is OK to not be OK. I learned to rest when I am not at my best. On my good days I made sure to focus on what makes me happy. I finally got into a lifting routine that works for the me NOW not the me BEFORE.
As we go into the new year take what you have learned from 2020 and use it toward making 2021 better. The world needs more empathy and you never know what a person is battling. As this post is being published I will be receiving my monthly chemo, what a way to end 2020.
The day that should have been my last chemo infusion. My original treatment plan I had to have 6 chemo infusions that consisted of Taxotere, Carboplatin, Perjeta and Herceptin then I would continue on the Herceptin for an entire year. Herceptin is a HER2+ targeted drug not a chemotherapy drug. It’s used along side Perjeta which is a chemotherapy drug, this is also the drug I am allergic to and was removed from my treatment. Looking back on this treatment is hard since I know these infusions were unsuccessful. I also want to say that my infusion center does not have a bell to ring and I remember at the time I was confused on why it didn’t because I kept seeing people post about ringing the bell when they finished treatment. However, now I understand not everyone gets to ring that bell so I am grateful there isn’t one at my infusion center.
By the time I reached chemo #6 I was a week behind the original schedule due to my body and Perjeta having a disagreement (that’s a nice way to put it). I made it! These chemo infusions were one of the hardest things I had put my body through. I lost all my hair, I gained the lovely steroid weight, and I was mentally and physically drained. By the time this treatment rolled around I wasn’t fully recovered from the previous treatments.
Walking into this treatment I was so tired, I was just looking forward to my Benadryl before infusion so I could take a nap. I was told the more the chemo builds up in your system the more the side effects linger which would explain the exhaustion and other unpleasant side effects.
However, I had no idea what my cousin Jessica had been planning for me as a celebration of finishing chemo. My mom and I were each given a gift that we could not open until I was at treatment. Once mom and I opened our shirts my phone flooded with the beautiful and strong women in my family sending photos of themselves in the same shirts. Needless to say I was in tears and felt like each of them were in the room with us.
The rest of the treatment I was pretty much sound asleep. The plan after this treatment was my Herceptin infusions would be delayed until after my mastectomy which was scheduled for February 8, 2018. Why the wait? My cancer care team; which is my breast surgeon, oncologist and plastic surgeon, wanted my body to heal and for the chemo to be through my system before my surgery was to take place.
After my diagnosis and treatment plan was established a great friend of mine, Tom, told me if I made it through chemo there was a ticket to the Patriot’s first playoff game at Gillette Stadium in January 2018. He told me this back in September 2017 when I first began and January seemed so far away. There were a lot of factors that had to happen but not only did I make it through this chemo but the Patriots made it to the playoffs with a bye week, which I really needed for my own recovery. On January 13, 2018 I was sitting in Gillette Stadium to watch the Patriots beat the Titans!
October 6, 2017 came very fast and this was going to be my second attempt at round 2. Mom had stayed the week with me verses flying home just to fly back. She told me she wasn’t going to be missing any of the treatments. I understood completely. Now I was very anxious about this treatment. I was hoping my body wouldn’t reject any more of the remaining chemo drugs. I was down to just 3 chemo drugs now. They went back to the initial rate of infusion and told me this would be the normal for all of my upcoming treatments. It was successful and I was back on track. The side effects were very similar to the first round with the exception of the mouth issues, thankfully. I would also say they weren’t as amplified either but by no means were they easy. Having my mom with me helped out a lot. She would force food at me. This time Sunday I did eat some toast and drank some water then pretty much slept all day. Monday I was awake a little more and I ate a breakfast and some dinner.
Some of the things I’ve learned about chemo side effects, they don’t all happen right after treatment. My gastric issues start usually 4 days after and last for 4 days or so. The funny taste in my mouth starts 6 days after treatment and lasts for up to 2 weeks. I’m not sure how to describe the taste except maybe metallic. I learned using plastic silverware helps to taste foods, I always carry some with me. I was able to tolerate more flavor than others I knew going through the same treatment. I believe this was due to the Perjeta being removed because after my first treatment it was bland foods I could tolerate. Chemo brain is a thing; it gets worse the more treatments you have. I could be in the middle of a sentence and literally forget what I was saying. This is something I had never experienced before or perhaps never noticed.
I started losing my hair two weeks after my first treatment chemo treatment. It began slowly as I was brushing it and the brush would take more than the usual amount that comes out. I had very long blonde hair. I had asked one of my friends to cut it short for me. The thought of going to a salon and having it chopped just wasn’t appealing. I believe it was having to explain to someone else what was going on I just wasn’t in the mood for that. He came over and worked some magic I suddenly had a pixie cut with a little extra on top. That description sounds horrible but it was super cute. Thanks Craig! I was very lucky I didn’t have a large head like I thought I might. This cut I was able to keep through the second treatment then the rest just started coming out so I asked him if he could take it all off. Below is a timeline of pictures that show how quickly it happened all dated. The first photo I was maybe having more hair on my brush each day, the second is when it started coming out in chunks, the third is the first cut he gave me, and the last was when it all got shaved off.
I was very surprised to realize losing my hair was the hardest part for me so far. I find that nothing looks right on me or looking in mirror I don’t see me looking back. This effects everyone differently so be careful of what you say to those going through treatment. Most days I wore beanies or bandanas but I did have some fun wigs I occasionally wore.
This post is about events that happened on September 29, 2017.
If that title doesn’t get your attention. I don’t know what will. The reality of cancer is the treatments for it are extreme. They poison, burn and cut. Not much has changed in the way of how they treat cancer. Keep in mind my posts are about my experiences through this whole cancer journey. Everyone responds to treatments differently. If you are facing a breast cancer diagnosis or a loved one is remember I am more like the exception not the rule.
The day before my second chemo treatment September 28, 2017 my mother flew down to take me to it. I felt I had to get through the first one to know I could handle it before she could see me go through it. The morning of treatment September 29, 2017 everything was normal. I woke up and did 30 minutes on my spin bike before heading into treatment. Everything was going normal, well as normal as having cancer at 36 could be. I got to my cancer center and they accessed my port and they took my bloodwork. Then we met with Kelli(PA) in another room to go over how I was feeling and then mom and I were off to the infusion room to picked out a chair where our day would be spent. Soon enough we were off and running with my steroid bag followed by the Benadryl bag and finishing with my anti-nausea bag. The next part was when the nurses came out to verify the chemo drugs. This time since I had no adverse reactions during the first treatment they would be infusing them at the normal prescribed rate. Up first was the Perjeta, a HER2 targeted chemo drug, last time was a 90 minute infusion and would be a 30 minute infusion today. I was thinking this is great it’s not going to be another 10 hour infusion day. This was just about when everything went wrong. About 8 minutes into my infusion I told my mother “something isn’t right”; “I don’t feel well”. Then I began tasting it in my mouth, I was standing up to get the nurses attention and my chest was getting tighter and breathing was becoming very difficult. Around this point I was back in my chair not sure if I collapsed or what, then my entire throat closed up. I have never experienced anything this scary in my life that I can recall. I was in and out of consciousness, I could see everyone scrambling and I remember Selena, at the time I didn’t know who it was, lean over me and say I’m so sorry and stab my leg with something and another nurse shot something into my IV. I was hooked up to oxygen and was having all my vitals being taken. At this point I felt I had like 10 people standing around me shouting out numbers talking about the ambulance is on the way. I was slowly coming back to alertness and my doctor was telling me it’s going to be okay. I was being told I would be leaving in an ambulance to go to the ER for observation, this part was beginning to freak me out and I think they could see this and I was reassured this was all precautionary after an anaphylaxis reaction. When the gurney and firemen came into sight I was becoming aware of what was happening and I started to realize I was leaving my mom alone to take the car to the hospital. By no means do I feel my mom isn’t fully capable of finding the hospital, however she just witnessed all of this. I remember asking Selena to input the address into her cell phone so she wouldn’t have any distractions or frustrations. Mainly frustrations. I was also told treatment was suspended for a week and I would not be getting this medication any longer.
I had never been in an ambulance before so this whole experience was a first. They kept me on oxygen and kept asking about the drugs I was on and ones they administered and why I was on certain things. I was trying to explain they give the steroid, Benadryl and anti nausea medications as precautionary to prevent an allergic reaction, clearly unsuccessful with me. I realized they probably didn’t get a lot of chemo patients and weren’t aware this was common practice for the multiple chemo drugs treatments. I have always referred to these chemo infusions as my hard chemo just for future reference. I did learn when you come to the ER in an ambulance you get right in. I was brought to a room and hooked up to the wall, ok it was some machine that would take my blood pressure every 30 minutes. This was when I asked for fluids since they had taken mine when I got in the room and I still had my port accessed. That nurse told me she would check with the doctor and get back to me. It was at least an hour before the ER doctor would come in and do some checks, then she said they would have to check with the pharmacy to see how long this medication would stay in me based off the amount that had been infused. Apparently, this would determine how long I had to be observed. Hours went by before she returned to only get a phone call and step out and disappear. By this time, it was after 5 and Dr. Simpson showed up to check on me. We discussed what this meant for my treatment and he was very upset to see I was attached to the wall and I couldn’t be walking around with my blood clot being the biggest concern. He told me he would get things started to get me out of here to go home.
I received a prescription for Epi-pens which I would now have to carry with me. I asked them why since it was a chemo drug that put me into anaphylaxis shock and none of my other allergens do this. I was told once you have an anaphylaxis reaction you are now more prone to getting them with other allergens. Wow this just keeps getting better. This was when I believe it truly sunk in the severity of everything I was doing and realizing this treatment could actually kill me. However, I’m not going out without a fight.
The next post on my Cancer Journey series will be called Second Chemo Take 2. I will go into what that infusion was like and discuss the side effects I experienced throughout these chemo treatments.
I’m going to be taking you through my fight. We will be starting from the beginning. Everyone’s experience is different. I hope my experiences help women who are going through this or about to go through this or perhaps you know someone who is going through this and want to know more so you can help them. Since my initial diagnosis I knew I wanted to be able to help other women get through the toughest battle of all. I will talk about what treatment is like, surgery, how my body has changed, energy levels. It won’t be just limited to treatment, I will be discussing my diet choices, getting back to lifting, and my transformation both mentally and physically. It isn’t all sunshine and rainbows, however, it isn’t all dark and stormy either.
I now see the world from a different point of view. My outlook on life has changed and I’m glad it has. I’m grateful for every day!
I first tried Daily Harvest in December 2019. I had been hearing about them through one of my favorite podcasts. I decided to use their code to save $25 off my first box and give them a try. After my first box I was hooked. My first box I did a variety of items, 4 smoothies, 2 oat bowls, bites(these are amazing), a soup and a latte. A few months after I started ordering they came out with the flatbreads, my favorite is the spinach artichoke. Then this summer they released their scoops, a delicious creamy treat(basically a dairy free ice cream) I got have the mint chip and dark chocolate. They are weekly boxes and I typically get 2-3 boxes a month. The size box I get is 9-11 items and typically is mostly smoothies since that is an easy way for me add protein in and get a good mix of carbs, fats and protein. If you are interested in trying daily harvest click here to save $25 off your first box. I also get $25 for referring you. They come frozen in a box with an insulated packaging with dry ice(careful). Once you receive your box store the containers in your freezer until you are ready to use them.
Here are a few of my favorites that make regular appearances in my boxes. I use water as the base however, you can use almond milk, coconut water/milk, milk or whatever your preference. Also adding protein is not something you have to do, I do this since I struggle with getting food down (chemo side effects) so when I make a smoothie I try to make it as nutritious as possible. When adding a protein powder I do add additional water and I mix it up in my nutribullet(any blender will work).
If you are interested in trying out this amazing small business click here to save on your first box. If you do try them let me know in the comments what your favorite flavor is. As long as there is no almonds I will give it a try.
October is breast cancer awareness. This year I am fundraising for Barbells for Boobs again. I would like to discuss what this amazing community is and all that they continue to do for me.
The following is taken from Barbells for Boobs mission located on their website “Barbells for Boobs is a 501(3) non-profit organization. We are providing support and education to incorporate physical activity as the foundation for breast cancer risk reduction, treatment and survivorship. We strive to improve the quality of life and outcomes in individuals impacted by breast cancer.” barbellsforboobs.org
2019 was a hard year for me. I progressed to metastatic breast cancer, had brain surgery followed by brain radiation. I really was struggling to find my way back even to my cancer normal. It was taking longer to recover from my chemo infusion than prior to brain surgery/radiation and also I was suddenly getting new side effects. Cancer the gift that keeps on giving. In November 2019 I decided to reach out to Barbells for Boobs and filled out an application to become part of their RAD program. I also did my first fundraiser with them because I believe in their vision.
2020 has been a crazy year to say the least. Barbells for Boobs has been working tirelessly to get the resources to those impacted by breast cancer through the many challenges 2020 has brought. My RAD intro call was so amazing. It made me feel like I found what I had been missing, a community that understood what I needed and could relate to me. They went over all the programs they had available to me. Barbells for Boobs RAD(resources after diagnosis) are providing physical activity(RADWODs), support(peer to peer groups) and education(exercise oncology, nutrition and mental health). I also was guest on their podcast Behind The Bra to share my story. I will include the link to my episode on the podcast website here.
My goal this year was to raise $1500 for Barbells for Boobs. I have hit this goal as of last week(thanks to all who have donated) I would like to keep going and see how much we can raise for them but I need everyone’s help. It would be amazing if we can raise $2020. I know 2020 has impacting people in so many different ways. If you are able to donate please consider making a donation on my page linked here. If you are unable to donate please share this blog post or my fundraising page with family and friends. It’s amazing how many people can be reached by sharing through your social media and emails. https://give.barbellsforboobs.org/fundraiser/kristin-lonergan
Here are some facts Barbells for Boobs provided that nobody talks about in October in a recent email sent out about what my fundraising efforts have done. Click on each link to read more about each statistic. 58% of women with breast cancer experience cancer-related depression. Approximately 80% of newly diagnosed patients with breast cancer experience PTSD symptoms. 32% of women who have been diagnosed with breast cancer experience General Anxiety Disorder. Regular exercise can have a positive effect on depression, anxiety and stress. 92% of the women in Barbells for Boobs programs are physically active. Supporting Barbells for Boobsenables them to continue their work in redefining the standard of care in breast health and improve the quality of life, post- diagnosis. Every $20 raised funds one resource. The cost to support one woman a month is $120. One in eight women will receive a breast cancer diagnosis in their lifetime.
Other ways to support Barbells for Boobs is through their men’sand women’s collection in their shop. 100% of the shop sales goes to support their programs.
I discovered Barbell for Boobs in July 2014 at the crossfit games in California. I went as a spectator and I remember when I went to their booth how awesome I thought their mission plan was and it’s only continued to grow since then. I had no idea 3 years later I would be diagnosed with two breast cancers.
Barbells for boobs helps women get back into the gym after breast cancer and improve the standard of care in breast health. Something people don’t discuss is that young women are diagnosed with breast cancer and because it’s not the normal some of these women are not getting the care they need. Early detection saves lives and women shouldn’t be turned away from receiving mammograms based on their age.
This October was hard for me, it was my 3rd October since my original diagnosis but it was my first October since one of my breast cancers progressed to . Since breast cancer is a daily part of my life I wanted to continue breast cancer awareness beyond October. This is why I started a fundraising page for Barbells for Boobs. As the holiday season starts kicking off I want to say even a $1 donation will help. I ask you to consider donating to my page. I will be including the link to my page below as well as Barbell for Boobs site where you can see how they use the donations they receive. Zionna, the founder, just started a podcast which discusses what the organization does and has been interviewing survivors to share their stories. Check out the amazing stories below.
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.