Saturday, April 13, 2019
Wednesday, January 9, 2019
Cancerversary Year 2
I was not really feeling typing out all of my feelings...so I made a video. I apologize for my crying, running make up, and repeating myself too much. But this is me and I just wanted to share.
Thank you to everyone for your love and support over the last few years. From the little events to the large, you have made my life an amazing adventure. I love you all
Nichole
Thank you to everyone for your love and support over the last few years. From the little events to the large, you have made my life an amazing adventure. I love you all
Nichole
Saturday, December 15, 2018
Don't Mess with Texas...or my new T-cells
So last year in 2017 I was told by my oncologist at MD Anderson that there was a potential clinical trial that I could take part in that had promising results. This trial dealt with T-cell therapy (t-cells are a type of white blood cell that fight disease. They fail to recognize cancer, which is mostly why our immune systems fail to fight cancer). Basically--it's a T-cell transplant. (They took some of my t-cells back in November of 2017, mutated them, and then will reintroduce them to my system).
This type of treatment has shown positive results in blood cancers (leukemias) and some sarcomas...but in other types of solid tumors they have not tried testing very much yet...I'm one of the first.
I've undergone multiple tests both in Texas and back home in Michigan to make sure I am able to participate and be a part of this. As of right now--it's a go!
I will be admitted to the hospital on Monday (12/17) and I will be there for about 2 weeks.
Tuesday (12/18) I will begin lympho-depletion AKA they will give me certain types of chemo to kill my white blood cells and bring my levels down to neutropenic levels. I will be spending Christmas in the hospital...not able to leave....possibly not even able to leave my room...and having to wear a mask so I don't get sick with some type of major germ that can kill me (Even something as simple as the common cold could kill me)
On Wednesday (12/26) the plan is to infuse my mutated t-cells to my system. There are some scary side effects...but I guess I've decided to take the chance. It's a choice of trying to live longer and finding cures for this cancer...or just continuing with what I'm currently being treated with...
I'm scared. I'm terrified. I'm afraid of the side effects and the potential outcomes that can occur....but...here goes nothing and everything all at the same time.
This type of treatment has shown positive results in blood cancers (leukemias) and some sarcomas...but in other types of solid tumors they have not tried testing very much yet...I'm one of the first.
I've undergone multiple tests both in Texas and back home in Michigan to make sure I am able to participate and be a part of this. As of right now--it's a go!
I will be admitted to the hospital on Monday (12/17) and I will be there for about 2 weeks.
Tuesday (12/18) I will begin lympho-depletion AKA they will give me certain types of chemo to kill my white blood cells and bring my levels down to neutropenic levels. I will be spending Christmas in the hospital...not able to leave....possibly not even able to leave my room...and having to wear a mask so I don't get sick with some type of major germ that can kill me (Even something as simple as the common cold could kill me)
On Wednesday (12/26) the plan is to infuse my mutated t-cells to my system. There are some scary side effects...but I guess I've decided to take the chance. It's a choice of trying to live longer and finding cures for this cancer...or just continuing with what I'm currently being treated with...
I'm scared. I'm terrified. I'm afraid of the side effects and the potential outcomes that can occur....but...here goes nothing and everything all at the same time.
Wednesday, November 21, 2018
Hair today...Gone Tomorrow
On Sunday (11/18) at about 10:00pm, I was laying in bed and took out my hair tie...attached to it were like 4 random pieces of hair...and I wanted to put my hair in a new pony tail. I ran my fingers through my hair (just like any girl would do) and I pulled out a good 20 pieces of hair. Ummm....WHAT??? that didn't happen...I thought "well maybe my hair is just dirty because I don't wash it ever"...I ran my fingers through my hair again...this time pulling out about 30 pieces of hair.
I texted the girl who does my hair and instantly said "Not sure if this is what chemo hair loss looks like...but this just happened." She responded and asked if my hair was dirty...I said it probably was. She then told me to shower and to text her a picture of what I combed out of my hair after I shampooed it....
Weeeelllllll.......more came out. In between the comb throughs...I cleaned out the brush...so this was two different comb throughs.
I had to force myself to get out of the shower and stop touching my hair because I probably would have pulled it all out.
To be honest...when this started happening--the only thing I could do was laugh about it. It was oddly satisfying pulling out pieces of hair.
Monday (11/19) I woke up and more hair fell out. I made the decision to shave whatever hair I had left on my head and donate it to whomever would take it (or just throw it out--I don't care anymore). I walked around wearing a hat, constantly touching my hair and pulling more and more hair out each time! I was starting to obsess over it. Is it falling out? Is it not? There was hair all over my clothes, in my food...EVERYWHERE. I was losing my mind.
One thing that I always wanted was that I wanted to shave my head in front of a group...I think it's so I wouldn't chicken out about it...but also just to show--IT'S JUST HAIR PEOPLE!! MY LIFE IS MORE ABOUT ME THAN MY STUPID HAIR! Granted--I loved my hair.
On Monday, I also received a phone call from one of my school administrators/previous volleyball coach who had said that the football coach was willing to let me shave my head at the pep assembly (our football team is going to the state championship this Saturday!! GO BIG REDS!!!!)) The coach even offered to shave his, as well as many teachers I work with. I don't feel the need to make anyone else shave their head. If they wanted to--they could, but I'll just do mine. HOWEVER, if the football team loses--They owe me a wig!
With that offer being made--I did it. I decided I was going to have my head shaved. In front of 600 some ninth grade students. It was on my terms. It was in front of a group of people, it was for a good reason. I could do this.
The next day I arrived at the gym, I could barely say hi to people because my anxiety was just through the roof. A few people asked if I was ready and I responded with "Nope--but I'm going to do it anyway." I walked out when I was announced. I sat down. My hair had been braided into two braids so the hair I did have could be donated. Those were cut first. Once they were cut my instant thought was "oh my god. Put it back, put it back!!" I had to breath. I had to focus. Then the head shaving started and I couldn't focus on anything except my breathing until it was done.
Once it was done, I couldn't even look at photos of myself. I needed a minute. My emotions were on a roller coaster. It took time and then I finally looked. I LOOKED GOOD!!! I looked the same. The only thing that was different was my hair was gone. BUT I WAS STILL ME!!!
The best part wasn't even the head shaving, which all the kids just stared at me not believing what they were watching. It was the fact that when I was finished having my head shaved--I took off my zip up to reveal a shirt that said "Bald and Badass" The kids went NUTS!
I have two wigs...one I currently have and the other is ordered. But to be real...I'm going to attempt to rock this bald head. I'm gonna wear awesome lipsticks, cool hats, big earrings, fake nose rings and just do what I want to do. Hair is not going to stop me from being myself...I'll miss it...but I'm going to rock what I am.
In the end--I'm glad I did it. I feel liberated. It's definitely cold and I've been sleeping with a hat on.
 |
| Hair taken from running my fingers through **The fuzzies were on my bed because of slippers** |
I texted the girl who does my hair and instantly said "Not sure if this is what chemo hair loss looks like...but this just happened." She responded and asked if my hair was dirty...I said it probably was. She then told me to shower and to text her a picture of what I combed out of my hair after I shampooed it....
Weeeelllllll.......more came out. In between the comb throughs...I cleaned out the brush...so this was two different comb throughs.
 |
| Comb through 1 |
 |
| Comb through 2 |
I had to force myself to get out of the shower and stop touching my hair because I probably would have pulled it all out.
To be honest...when this started happening--the only thing I could do was laugh about it. It was oddly satisfying pulling out pieces of hair.
Monday (11/19) I woke up and more hair fell out. I made the decision to shave whatever hair I had left on my head and donate it to whomever would take it (or just throw it out--I don't care anymore). I walked around wearing a hat, constantly touching my hair and pulling more and more hair out each time! I was starting to obsess over it. Is it falling out? Is it not? There was hair all over my clothes, in my food...EVERYWHERE. I was losing my mind.
One thing that I always wanted was that I wanted to shave my head in front of a group...I think it's so I wouldn't chicken out about it...but also just to show--IT'S JUST HAIR PEOPLE!! MY LIFE IS MORE ABOUT ME THAN MY STUPID HAIR! Granted--I loved my hair.
On Monday, I also received a phone call from one of my school administrators/previous volleyball coach who had said that the football coach was willing to let me shave my head at the pep assembly (our football team is going to the state championship this Saturday!! GO BIG REDS!!!!)) The coach even offered to shave his, as well as many teachers I work with. I don't feel the need to make anyone else shave their head. If they wanted to--they could, but I'll just do mine. HOWEVER, if the football team loses--They owe me a wig!
With that offer being made--I did it. I decided I was going to have my head shaved. In front of 600 some ninth grade students. It was on my terms. It was in front of a group of people, it was for a good reason. I could do this.
The next day I arrived at the gym, I could barely say hi to people because my anxiety was just through the roof. A few people asked if I was ready and I responded with "Nope--but I'm going to do it anyway." I walked out when I was announced. I sat down. My hair had been braided into two braids so the hair I did have could be donated. Those were cut first. Once they were cut my instant thought was "oh my god. Put it back, put it back!!" I had to breath. I had to focus. Then the head shaving started and I couldn't focus on anything except my breathing until it was done.
Once it was done, I couldn't even look at photos of myself. I needed a minute. My emotions were on a roller coaster. It took time and then I finally looked. I LOOKED GOOD!!! I looked the same. The only thing that was different was my hair was gone. BUT I WAS STILL ME!!!
The best part wasn't even the head shaving, which all the kids just stared at me not believing what they were watching. It was the fact that when I was finished having my head shaved--I took off my zip up to reveal a shirt that said "Bald and Badass" The kids went NUTS!
I have two wigs...one I currently have and the other is ordered. But to be real...I'm going to attempt to rock this bald head. I'm gonna wear awesome lipsticks, cool hats, big earrings, fake nose rings and just do what I want to do. Hair is not going to stop me from being myself...I'll miss it...but I'm going to rock what I am.
In the end--I'm glad I did it. I feel liberated. It's definitely cold and I've been sleeping with a hat on.
I AM A BALD, BEAUTIFUL, & BOLD
BADASS.
Thursday, November 15, 2018
Treatments Thus Far
So my diagnosis is Stage IV adenocarcinoma of the lung with metastases to the brain with a HER2+ mutation. In total I've been on 6 different treatments for my lungs, 5 of which that have failed at some point and the most recent one to just keep me going until we hear from Texas about a T-cell therapy clinical trial. I have also been treated 4 times for the lesions that have been found in my brain...here is all about those treatments!
Lung Cancer Treatment:
Treatment 1: Six Infusions of Carboplatin Alimta (chemotherapy). This was my first type of cancer treatment. I thought this was going to be like the chemo you see on TV...it wasn't. I dealt with nausea, fatigue, etc...had to get shots of Neulasta to increase my white blood cell count, but I didn't lose my hair, it just thinned. Many people talk about that being a major thing...I didn't experience this here. Once I had done my 6 treatments of carboplatin, it was decided that in order to avoid reaching the toxicity of carboplatin it should be time to switch to a different treatment. I could use Alimta again if I needed to eventually (which I did), but it was time for something new...time for a new treatment...
Treatment 2: 6.5 Months on Gilotrif/Afatinib (targeted therapy). This treatment has been by far the best for my quality of life. I took one pill once a day...the side effects were a skin rash that looked like acne and mild diarrhea that could turn crazy. But if I took Imodium--it was manageable. When this treatment stopped working--I was extremely upset because my QOL changed. Scans eventually showed lung progression...time for a new treatment....
Treatment 3: 4 months on Kadcyla and Nerlynx (targeted therapy). This treatment for lack of a better term SUCKED. It was an infusion ever 3 weeks, plus Nerlynx pills every day. The diarrhea with this treatment was RIDICULOUS!!! I was in the office 2/7 days due to dehydration from pooping soo much....and when people said "just drink more water"...I wanted to punch them in the face. Anything I ate or drank went right through me. IT. WAS. AWFUL. So when this one stopped working...I wasn't too upset...I was just sick of crapping all the time. Kadcyla wasn't the problem...it was more the Nerlynx. This treatment was super shitty. Cough started to get worse, scans showed growth...enter next treatment.
Treatment 4: 3 Months of Carboplatin Alimta (chemotherapy) and Keytruda (Immunotherapy). I was back on Chemotherapy, but this time it was a lower dose because it was mixed with Keytruda, an immunotherapy. I still had side effects from chemotherapy, got neulasta shots, etc. I eventually reached my toxicity level with Carboplatin and it almost killed me...sent me to the hospital with a BP of 80/40, Heart rate in the 180s, temperature around 102....yea that one was rough. Once that reaction occurred, it was just Alimta and Keytruda for a bit. Scans showed growth that were confirmed with a lung biopsy...enter next treatment.
Treatment 5: 1 Month of Opdivo (Immunotherapy). This treatment didn't last very long. It did have minimal side effects....but not long after 2 infusions I noticed my cough getting much worse along with my breathing...scan showed growth...time to change...again
Treatment 6: Current Treatment: Taxotere and Cyramza (Chemotherapy and Targeted therapy) I've only had one infusion of this mixture. Apparently this one is supposed to cause hairloss. The first week after this infusion was rough. I felt nausea, fatigue, I broke out in a rash (But that was probably from steroids). It wasn't easy, but my blood levels look OK so my body is handling it. This treatment was chosen for the time being while I wait to hear from MD Anderson regarding a clinical trial that I am eligible and have given my consent on...
The clinical trial is called Adaptimmune. The goal is to use the patient's T-cells (already harvested), mutate them to fight my cancer..kind of working like a transplant in a way...We are waiting to hear what happens with this...but the goal is CURABLE....It's a hope...it's a chance...it's a scary chance...but it's one that we are hoping to take.
FYI for anyone that uses Neulasta--the bone pain is ROUGH. Take the Claritin, heat worked better for me than ice, and don't be afraid to relax. It goes away...eventually.
Last thing--getting my port was one of the BEST decisions I have made in my life. It is so convenient. To be fair...I haven't had any issues ::knock on wood:: and it just looks like a third nipple on my chest...only noticeable if you actually are looking for it.
Brain Lesion Treatment:
For those of you that don't know what Gamma knife is...it's targeted brain radiation. They basically take high doses of radiation, target the lesion that is in the brain....zap it...and let it try to be the treatment. It has less side effects than whole brain radiation, which is another option eventually. The only...challenging part...is the nifty headwater they screw into your head. I don't feel any pain from the radiation, the pin sites just take time to heal.
How the Day of Gamma Knife Goes: You have to arrive to the Gamma Knife facility SUPER early...like 5:30AM early. Once there, they start an IV, go over paperwork and make sure everything is ready to go. They give you medication to help you relax, then take you to have the headpiece placed on your head. (yes they actually screw it into your head in four places) They do use lidocaine to numb the spots, but you still feel loads of pressure and they will always say "we almost have it", but once it's on...you're good.
After the headpiece is placed, the nurses will take you for a Brain MRI, the a Brain CT for the doctors and staff to make a plan as to how to treat the lesion(s) and to make sure everything gets treated. Then you FINALLY get to eat breakfast...while they come up with a plan on how to radiate your brain ;)
Once the plan is set, and they can get started, they wheel you into a room and set you up on the gamma knife table...they will manipulate your placement so they are able to better target what they are aiming for...the machine is VERY similar to an MRI (very enclosed). After everything is treated, they take the head piece off by unscrewing it, they tell you how to take care of the pin sites and then they send you home!
Gamma Knife 1: 1/18/17 to treat 1 lesion
Gamma Knife 2: 10/13/17 to treat 8 lesions
Gamma Knife 3: 12/1/17 to treat 1 lesion
Gamma Knife 4: 11/2/18 to treat 2 lesions
A total of 12 different brain lesions that have been found and treated. So far Gamma knife appears to be working to keep the lesions at bay. The scary part is just when more appear. Eventually I will have to more than likely do whole brain radiation...but for now--I'll take Gamma Knife any day of the week.
Why I Go Where I Go:
I get asked all the time why I go to a private practice linked with Royal Oak Beaumont Hospital rather than Karmanos or U of M or Cleveland Clinic, etc.....The truth is...I've seen other opinions. I've visited MD Anderson in Texas and a doctor at the University of Michigan to seek second opinions. They communicate...I'm very happy with my choice in doctor and my medical team....I trust her more than anyone will ever understand. She has the one of the most challenging and stressful jobs...but she does it well! She researches, follows up with me, communicates with me and the other doctors...she knows what she is doing. From the doctors, the PAs, the nurses, the lab workers...everyone there has been great towards me. I'm very thankful. 💖
The best advice I can give someone going through treatment is to find someone that YOU feel comfortable with, a doctor that supports you, and an office where you feel you are being treated fairly. Sometimes we don't get to pick and are forced to attend facilities based on our insurance or the type of treatment we need to receive... but if you get the choice--go where you are comfortable!
Lung Cancer Treatment:
Treatment 1: Six Infusions of Carboplatin Alimta (chemotherapy). This was my first type of cancer treatment. I thought this was going to be like the chemo you see on TV...it wasn't. I dealt with nausea, fatigue, etc...had to get shots of Neulasta to increase my white blood cell count, but I didn't lose my hair, it just thinned. Many people talk about that being a major thing...I didn't experience this here. Once I had done my 6 treatments of carboplatin, it was decided that in order to avoid reaching the toxicity of carboplatin it should be time to switch to a different treatment. I could use Alimta again if I needed to eventually (which I did), but it was time for something new...time for a new treatment...
Treatment 2: 6.5 Months on Gilotrif/Afatinib (targeted therapy). This treatment has been by far the best for my quality of life. I took one pill once a day...the side effects were a skin rash that looked like acne and mild diarrhea that could turn crazy. But if I took Imodium--it was manageable. When this treatment stopped working--I was extremely upset because my QOL changed. Scans eventually showed lung progression...time for a new treatment....
Treatment 3: 4 months on Kadcyla and Nerlynx (targeted therapy). This treatment for lack of a better term SUCKED. It was an infusion ever 3 weeks, plus Nerlynx pills every day. The diarrhea with this treatment was RIDICULOUS!!! I was in the office 2/7 days due to dehydration from pooping soo much....and when people said "just drink more water"...I wanted to punch them in the face. Anything I ate or drank went right through me. IT. WAS. AWFUL. So when this one stopped working...I wasn't too upset...I was just sick of crapping all the time. Kadcyla wasn't the problem...it was more the Nerlynx. This treatment was super shitty. Cough started to get worse, scans showed growth...enter next treatment.
Treatment 4: 3 Months of Carboplatin Alimta (chemotherapy) and Keytruda (Immunotherapy). I was back on Chemotherapy, but this time it was a lower dose because it was mixed with Keytruda, an immunotherapy. I still had side effects from chemotherapy, got neulasta shots, etc. I eventually reached my toxicity level with Carboplatin and it almost killed me...sent me to the hospital with a BP of 80/40, Heart rate in the 180s, temperature around 102....yea that one was rough. Once that reaction occurred, it was just Alimta and Keytruda for a bit. Scans showed growth that were confirmed with a lung biopsy...enter next treatment.
Treatment 5: 1 Month of Opdivo (Immunotherapy). This treatment didn't last very long. It did have minimal side effects....but not long after 2 infusions I noticed my cough getting much worse along with my breathing...scan showed growth...time to change...again
Treatment 6: Current Treatment: Taxotere and Cyramza (Chemotherapy and Targeted therapy) I've only had one infusion of this mixture. Apparently this one is supposed to cause hairloss. The first week after this infusion was rough. I felt nausea, fatigue, I broke out in a rash (But that was probably from steroids). It wasn't easy, but my blood levels look OK so my body is handling it. This treatment was chosen for the time being while I wait to hear from MD Anderson regarding a clinical trial that I am eligible and have given my consent on...
The clinical trial is called Adaptimmune. The goal is to use the patient's T-cells (already harvested), mutate them to fight my cancer..kind of working like a transplant in a way...We are waiting to hear what happens with this...but the goal is CURABLE....It's a hope...it's a chance...it's a scary chance...but it's one that we are hoping to take.
FYI for anyone that uses Neulasta--the bone pain is ROUGH. Take the Claritin, heat worked better for me than ice, and don't be afraid to relax. It goes away...eventually.
Last thing--getting my port was one of the BEST decisions I have made in my life. It is so convenient. To be fair...I haven't had any issues ::knock on wood:: and it just looks like a third nipple on my chest...only noticeable if you actually are looking for it.
PHOTO EVIDENCE
 |
| T-cells |
For those of you that don't know what Gamma knife is...it's targeted brain radiation. They basically take high doses of radiation, target the lesion that is in the brain....zap it...and let it try to be the treatment. It has less side effects than whole brain radiation, which is another option eventually. The only...challenging part...is the nifty headwater they screw into your head. I don't feel any pain from the radiation, the pin sites just take time to heal.
How the Day of Gamma Knife Goes: You have to arrive to the Gamma Knife facility SUPER early...like 5:30AM early. Once there, they start an IV, go over paperwork and make sure everything is ready to go. They give you medication to help you relax, then take you to have the headpiece placed on your head. (yes they actually screw it into your head in four places) They do use lidocaine to numb the spots, but you still feel loads of pressure and they will always say "we almost have it", but once it's on...you're good.
After the headpiece is placed, the nurses will take you for a Brain MRI, the a Brain CT for the doctors and staff to make a plan as to how to treat the lesion(s) and to make sure everything gets treated. Then you FINALLY get to eat breakfast...while they come up with a plan on how to radiate your brain ;)
Once the plan is set, and they can get started, they wheel you into a room and set you up on the gamma knife table...they will manipulate your placement so they are able to better target what they are aiming for...the machine is VERY similar to an MRI (very enclosed). After everything is treated, they take the head piece off by unscrewing it, they tell you how to take care of the pin sites and then they send you home!
PHOTO EVIDENCE
Gamma Knife 1: 1/18/17 to treat 1 lesion
Gamma Knife 2: 10/13/17 to treat 8 lesions
Gamma Knife 3: 12/1/17 to treat 1 lesion
Gamma Knife 4: 11/2/18 to treat 2 lesions
A total of 12 different brain lesions that have been found and treated. So far Gamma knife appears to be working to keep the lesions at bay. The scary part is just when more appear. Eventually I will have to more than likely do whole brain radiation...but for now--I'll take Gamma Knife any day of the week.
Why I Go Where I Go:
I get asked all the time why I go to a private practice linked with Royal Oak Beaumont Hospital rather than Karmanos or U of M or Cleveland Clinic, etc.....The truth is...I've seen other opinions. I've visited MD Anderson in Texas and a doctor at the University of Michigan to seek second opinions. They communicate...I'm very happy with my choice in doctor and my medical team....I trust her more than anyone will ever understand. She has the one of the most challenging and stressful jobs...but she does it well! She researches, follows up with me, communicates with me and the other doctors...she knows what she is doing. From the doctors, the PAs, the nurses, the lab workers...everyone there has been great towards me. I'm very thankful. 💖
The best advice I can give someone going through treatment is to find someone that YOU feel comfortable with, a doctor that supports you, and an office where you feel you are being treated fairly. Sometimes we don't get to pick and are forced to attend facilities based on our insurance or the type of treatment we need to receive... but if you get the choice--go where you are comfortable!
My "Romantic" Life
When I was first diagnosed with cancer....I was as single as can be. I was 27, I was dating, I was having fun, I LOVED being me. Sure I had a few dates or boyfriends here and there, but I hadn't had a serious relationship in like four years.And I was happy with that. I didn't care. I didn't want one. I was happy in my life without it. I knew that eventually I would meet someone that would make me happy--but during that time I was good.
When I was diagnosed...I for some reason changed my point of view to "I'm happy being single" to "I'm going to be single forever because no one is going to love the cancer girl."
When I was first diagnosed I remember asking if there was a dating website for cancer patients...my sister laughed at me and said "I'm not sure, but why does it really matter?" (I was kind of joking when I asked it--but was curious! They have dating websites for everything else)
As the weeks went on with cancer treatment, I was getting more and more concerned that I was never going to date again or dying alone. Around Valentine's Day I was back in the hospital with a chemo fever and I was at the point in my treatment when my hair could potentially fall out. While brushing my hair I watched like five pieces of hair fall out of my head....and I started crying. My sisters felt so bad and couldn't understand why I was crying even a nurse came in to see what was wrong. I finally blurted out "MY HAIR IS FALLING OUT" and I held up the 5 pieces of hair that had come out when I combed my hair. My sisters and the nurse kind of stared at each other like.."ooook?" As I continued to cry, they still didn't understand why I was upset. I then shouted
They just started laughing. Firstly, I was far from fat. I weighed about 150 pounds and my cheeks were just puffy from steroids. Secondly, when you lose your hair from chemo and cancer it normally will come out in clumps. My hair was just coming out from natural shedding. (My hair did thin from my original chemo, but it didn't fall out). Lastly, I was being ridiculous. Of all the things that I could possibly be worried about--this probably shouldn't be one of them.
As months went by I started to feel more like myself, I went off chemotherapy and was put on my second treatment which was a pill, and I was off oxygen. People didn't look at me and think to themselves "what is wrong with that girl?" I had been spending time with a male friend of mine, but I wasn't sure if I had feelings for him or not...I was kind of unsure and didn't want to put anyone through what I was going through...
When reading about dating with cancer online (yes--I did my research) they say not to tell the person that you have cancer right away. I get that...The information can be slightly overwhelming for others to hear. You may want to be friends with the cancer patient, but why would you want to date them??
Well the problem with not telling the person about my cancer is if they searched ANYTHING about me online (my Facebook, Twitter, Instagram...hell even googling my name) they would know within .05 seconds that I had stage IV cancer. Yet again my thoughts of "Why would someone want to date someone that is just going to die?" continued to come into my head.
Near the end of July in 2017, my best friend from high school's husband had sent me a text about a guy he wanted to set me up with. I was unsure about the situation in general because I hate set ups and he had been trying to set me up with this same guy even before I had cancer. When he first sent me a picture of the guy a year before my response was "eh--he's really not my type and I'm not in the place where I want to date. I need to get to know myself". (Remember--I was loving the single life 😉). Throughout the year he brought the guy up a few times and each time I denied the set up...I didn't want to get set up, I didn't want to date, and I had been diagnosed with cancer a few months before...I didn't need anything extra on my plate, that included a boyfriend.
Anyway--during the month of July I was feeling a bit more adventurous with my life, but I was also annoyed that he continued to bring this guy up even though I politely avoided the situation before. I decided to tell my best friend's husband to give this guy my number. I figured I could really easily scare this guy off. I was really good at being intimidating and awkward...plus I had "the cancer" so that was scary enough.
A few hours past that day and I received a text.
When I was diagnosed...I for some reason changed my point of view to "I'm happy being single" to "I'm going to be single forever because no one is going to love the cancer girl."
When I was first diagnosed I remember asking if there was a dating website for cancer patients...my sister laughed at me and said "I'm not sure, but why does it really matter?" (I was kind of joking when I asked it--but was curious! They have dating websites for everything else)
As the weeks went on with cancer treatment, I was getting more and more concerned that I was never going to date again or dying alone. Around Valentine's Day I was back in the hospital with a chemo fever and I was at the point in my treatment when my hair could potentially fall out. While brushing my hair I watched like five pieces of hair fall out of my head....and I started crying. My sisters felt so bad and couldn't understand why I was crying even a nurse came in to see what was wrong. I finally blurted out "MY HAIR IS FALLING OUT" and I held up the 5 pieces of hair that had come out when I combed my hair. My sisters and the nurse kind of stared at each other like.."ooook?" As I continued to cry, they still didn't understand why I was upset. I then shouted
"NO ONE IS GOING TO LOVE THE FAT,BALD AND UGLY CANCER GIRL!"
They just started laughing. Firstly, I was far from fat. I weighed about 150 pounds and my cheeks were just puffy from steroids. Secondly, when you lose your hair from chemo and cancer it normally will come out in clumps. My hair was just coming out from natural shedding. (My hair did thin from my original chemo, but it didn't fall out). Lastly, I was being ridiculous. Of all the things that I could possibly be worried about--this probably shouldn't be one of them.
As months went by I started to feel more like myself, I went off chemotherapy and was put on my second treatment which was a pill, and I was off oxygen. People didn't look at me and think to themselves "what is wrong with that girl?" I had been spending time with a male friend of mine, but I wasn't sure if I had feelings for him or not...I was kind of unsure and didn't want to put anyone through what I was going through...
When reading about dating with cancer online (yes--I did my research) they say not to tell the person that you have cancer right away. I get that...The information can be slightly overwhelming for others to hear. You may want to be friends with the cancer patient, but why would you want to date them??
Well the problem with not telling the person about my cancer is if they searched ANYTHING about me online (my Facebook, Twitter, Instagram...hell even googling my name) they would know within .05 seconds that I had stage IV cancer. Yet again my thoughts of "Why would someone want to date someone that is just going to die?" continued to come into my head.
Near the end of July in 2017, my best friend from high school's husband had sent me a text about a guy he wanted to set me up with. I was unsure about the situation in general because I hate set ups and he had been trying to set me up with this same guy even before I had cancer. When he first sent me a picture of the guy a year before my response was "eh--he's really not my type and I'm not in the place where I want to date. I need to get to know myself". (Remember--I was loving the single life 😉). Throughout the year he brought the guy up a few times and each time I denied the set up...I didn't want to get set up, I didn't want to date, and I had been diagnosed with cancer a few months before...I didn't need anything extra on my plate, that included a boyfriend.
Anyway--during the month of July I was feeling a bit more adventurous with my life, but I was also annoyed that he continued to bring this guy up even though I politely avoided the situation before. I decided to tell my best friend's husband to give this guy my number. I figured I could really easily scare this guy off. I was really good at being intimidating and awkward...plus I had "the cancer" so that was scary enough.
A few hours past that day and I received a text.
"Hey, this is Robert"
Who the f*** is Robert?!? I didn't respond for a few minutes because I couldn't think of why someone named "Robert" was texting me. Eventually it was made clear that he was the guy I was being set up with.
I tried to be short with him to "scare him off," but in the end he was super patient, funny, he knew the difference between to, two and too....plus he was really cute. So after a few weeks, when he asked me out on a date. I gave him a chance.
He gave me two options on where to go on a date. We decided on dinner and then a comedy club. I can honestly say--it was the best first date I have ever been on. We talked, we laughed, we had fun, and I really felt like I could get to know him.
The second date, we went to dinner and a movie and when we said good bye he hugged me and he nearly broke 3 vertebrae in my back...but then when we stopped hugging he kissed me....so I think he was a little nervous.
Time has gone by, he has been super understanding of everything that happens to me. He is always super supportive. We have our ups and downs...but he is still such a great guy to me and so far I am very thankful.
So in the future we will see how things lead, but here are some pictures of Rob and I...I love you 💗
UPDATE: (1/15/19)
About 2 weeks ago Rob and I split up. We were growing apart for a few weeks and the stress of any given relationship in addition to me being sick caught up. The split was mutual, however, unfortunate. I'm thankful for the time we had together--but it didn't work out.
For the time being--I'm focusing on myself and my life. My body has been through a lot in the last few years and I need time to self heal.
He gave me two options on where to go on a date. We decided on dinner and then a comedy club. I can honestly say--it was the best first date I have ever been on. We talked, we laughed, we had fun, and I really felt like I could get to know him.
The second date, we went to dinner and a movie and when we said good bye he hugged me and he nearly broke 3 vertebrae in my back...but then when we stopped hugging he kissed me....so I think he was a little nervous.
Time has gone by, he has been super understanding of everything that happens to me. He is always super supportive. We have our ups and downs...but he is still such a great guy to me and so far I am very thankful.
So in the future we will see how things lead, but here are some pictures of Rob and I...I love you 💗
UPDATE: (1/15/19)
About 2 weeks ago Rob and I split up. We were growing apart for a few weeks and the stress of any given relationship in addition to me being sick caught up. The split was mutual, however, unfortunate. I'm thankful for the time we had together--but it didn't work out.
For the time being--I'm focusing on myself and my life. My body has been through a lot in the last few years and I need time to self heal.
Tuesday, November 13, 2018
Olllldddddd Journal (video) logs from Early 2017
Two years ago when I was diagnosed---right from the very beginning I decided I wanted to "share my story." When I made that decision I thought a video documenting everything would be the way to go...unfortunately, I kind of just stopped after a few weeks. Plus...who wants to watch these lonnggg fricken videos??? Well--maybe someone
During these videos I put in some time talking about little things that had occurred so I could remember them. To be honest....I haven't previewed or even watched these before posting them... But I wanted to show my audience how I looked, felt, sounded, and the image I had even when I was just diagnosed. As time has gone on I remember most of the things that occurred, but forget many of the small details.....
With that being said...I hope you enjoy (laugh, cry or even just smile) at me trying to believe I could make a difference with my experience.
During these videos I put in some time talking about little things that had occurred so I could remember them. To be honest....I haven't previewed or even watched these before posting them... But I wanted to show my audience how I looked, felt, sounded, and the image I had even when I was just diagnosed. As time has gone on I remember most of the things that occurred, but forget many of the small details.....
With that being said...I hope you enjoy (laugh, cry or even just smile) at me trying to believe I could make a difference with my experience.
My Reason
1/25/2017
Cancer Day
1/25/2017
Hospital Stays & Goals
1/25/2017
Chemo Days & After
1/26/2017
Gamma Knife
1/29/2017
Family
1/29/2017
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