I'm currently sitting in bed, trying to convince myself to get up and get dressed because I need to go drive down to the hospital for my routine blood draw. But instead of getting out of bed, I'm hiding under the covers, trying to breathe through the panic I'm feeling.
I'm scared to almost be done with this. I expressed to a friend yesterday that instead of being excited about my last chemo, I'm incredibly anxious. She made a good point - chemo is still chemo, no matter where the session comes in the lineup. She's so right. Maybe that's what people don't get as far as me not wanting to celebrate. It's still this shitty thing that I have to endure, and I'll likely still be experiencing the side effects for another month or two. And on top of trying to recover from chemo, I'm going have to endure the new side effects from radiation. Plus, I'm still dealing with a lot of residual pain from my surgery, even 6 months later. I've asked both my oncologist and my surgeon about it, and they say it's normal to experience pain for a long time. I don't want to just deal with it, so I finally put in a request to see a lymphedema trained physical therapist in the hopes that they can teach me stretches to help my sore muscles, and also hopefully do some scar tissue massage to ease the pain in my breast.
The pain, frustration, fear, isolation, and agony don't stop with chemo. I'm starting to realize that it's only just begun.
I guess I should get out of bed now and face the needle.
Sunday, June 14, 2015
Friday, June 12, 2015
Anxiety
I've struggled with anxiety for a lot of my life. It wasn't until I started seeing a therapist when I was in high school that I realized that anxiety was what I was experiencing. The unexplainable panic, increased heart rate, sweating, and self soothing habits were all indications of my anxiety. As I've gotten older, I've been better at recognizing it and coping with it. So, it hasn't taken me long to realize that as my final chemo looms closer, the feeling I'm experiencing is anxiety. It's hard to explain, and maybe people won't understand it, but I have a lot of fear about not being in chemo anymore because then that leaves me with the question "so how do we monitor my cancer now?" I asked that question this past Monday at my appointment with my oncologist, and he said from now on I'll have yearly mammograms to screen for recurrence. My thought wavered between "Okay, I'll trust you since you're my doctor," and also "WTF! That's it? No blood tests, MRI's or ultrasounds?!" I had to take a breathe and just accept what Dr. Shek told me. A lot of my experience with this has been trusting other people with my life who have more knowledge about cancer than I do. That's kind of scary, but it's really all I can do. So.. I suppose my follow up care is no different. I just need to be more diligent about self exams.
I also realized yesterday that the last little bit of my innocence was taken away from me. We hear about cancer through other people's experiences with it - their grandmother had it, or their aunt, or cousin - but actually experiencing it first hand is different. You no longer get to be naive about it. I had goals and plans for my life before my diagnosis. Now, some of those things have had to be put on hold. When I saw Dr. Fisch on Monday, I was talking about all the things I've learned about breast cancer and treatment over the last 6 months. He said, "I'm sure it's all stuff you could've gone your whole life without having to learn about." He's right. I wish I didn't know what I know now about breast cancer.
Monday is going to be bittersweet. I'm trying to mentally prepare myself for the anxiety and possible panic I'll feel about being done with chemo. I know that as much as I'm currently aware of the impending panic, it will likely still increase. I think that being aware of it now has me somewhat ahead of the game when dealing with it as it escalates. I need to remind myself to be gentle with myself. My life has been forever changed by my cancer, but I refuse to let it control how I live.
I also realized yesterday that the last little bit of my innocence was taken away from me. We hear about cancer through other people's experiences with it - their grandmother had it, or their aunt, or cousin - but actually experiencing it first hand is different. You no longer get to be naive about it. I had goals and plans for my life before my diagnosis. Now, some of those things have had to be put on hold. When I saw Dr. Fisch on Monday, I was talking about all the things I've learned about breast cancer and treatment over the last 6 months. He said, "I'm sure it's all stuff you could've gone your whole life without having to learn about." He's right. I wish I didn't know what I know now about breast cancer.
Monday is going to be bittersweet. I'm trying to mentally prepare myself for the anxiety and possible panic I'll feel about being done with chemo. I know that as much as I'm currently aware of the impending panic, it will likely still increase. I think that being aware of it now has me somewhat ahead of the game when dealing with it as it escalates. I need to remind myself to be gentle with myself. My life has been forever changed by my cancer, but I refuse to let it control how I live.
Monday, June 8, 2015
One chapter ends; another begins
Next Monday might be the end of my "chemotherapy" chapter, but today was the start of my "radiation" chapter.
A testament to the "chemo brain" side effect of chemo - I had my appointment written down as 11:30 in my day planner, and 10:30 in my phone. If it weren't for my mom coming in my room last night to check and ask if I wanted her to come with me and confirm what time the appointment was, I would've been late. I called this morning just to double check - and sure enough, the appointment was actually for 10:30.
We drove to the radiation center, which is not at the hospital where I get chemo, but a separate building in a different part of town. I wrote the address down wrong, and so I had to call to confirm the address and get directions. We found the building, and walked inside. It's a small center, and as is customary with every new doctor's office, there were forms for me to sign.
I half-assedly read each sheet of paper (I know, that sounds awful. I really should be more diligent about what I'm signing when it concerns my health), and signed where necessary. I gave the receptionist/nurse the clipboard and pen back, and gave her my copay.
A few minutes later, she called my name, and we walked back. I stepped onto the scale, and cringed when I looked at the number. I'm up 14 pounds from when this all started, 2 pounds shy of my heaviest weight. I hate the damn scale. Even worse - I'll have to do it again later today at my follow up doctor appointment with my oncologist. So, twice in one day I'll get mocked with that number staring back at me. The nurse walked us back into a room, took my blood pressure and temperature, and told me the doctor would be right in.
Not too long after she left, in walked a tall, thin, man with glasses. He introduced himself as Dr. Fisch, and shook my hand, then my mom's. He sat down and asked what questions I had. The only real question I had was how much radiation he was suggesting. I was pretty sure I already knew the answer, so I wasn't surprised when he said "30 sessions". My mom, however, was a little shocked. Just as when we met my oncologist for the first time, and I knew he was going to tell me I needed chemo, I knew I was going to need radiation. Dr. Fisch explained his reasoning why he recommended the more gradual treatment for my case - because of my age, the fact that I had a lumpectomy, and also had chemotherapy were all reasons he felt the shorter sessions, but longer time frame were a better fit for me. We then went over possible side effects - fatigue, burning, swelling, blisters, possible lung or heart problems... I held back my tears while he continued to talk. He reassured me that because of my pale complexion, he doesn't think I'll have much discoloration or burning. Apparently my thin build also bodes well for my treatment, though I can't remember the reason why. After, or maybe it was before, describing the possible side effects, he also explained how the radiation would work. The first 25 sessions would be the whole breast, and the last 5 sessions would be "boost" sessions, targeted only on the scar and lump site. I'll be getting little tattoo dots to act as markers for the radiation, and I'll lay in the same position each time. Since my left side is the cancer side, they're going to take x-rays and an in-depth CT scan, to avoid as much contact with my heart as possible. Because I had no lymph node involvement, I won't be getting any radiation in my armpit or my clavicle.
After these explanations, Dr. Fisch stepped out while I took off my tank top and bra, and put on the stylish paper vest. I rolled my eyes as I told my mom "Great, another person added to the list of people that have seen me topless in the last 6 months." My breasts are becoming decreasingly sexualized as this experience moves forward. That list has gotten pretty long, though I haven't officially kept track. Dr. Fisch walked back in, washed his hands, and then started his examination. He felt my neck, my armpits, and then asked me to lay back on the table. He first examined my right, non-cancer, breast and reassured me that nothing felt abnormal - which was music to my ears, because just last week I thought I felt a lump. I'm sure I'm always going to be hyper-aware of any new changes for the rest of my life, so hearing that soothed a little of my anxiety. Then he moved on to the cancer breast, and told me that I've healed really well. He didn't feel any fluid buildup near the scar or tumor area, and nothing else in the breast felt abnormal. Again, a huge sigh of relief. He then walked out and told me to get dressed again.
When he walked back in, we further discussed my treatment plan. He told me that if I were one of his relatives, he'd tell me to do the radiation. Just like with chemo, I knew that saying 'no' was an option, but in a way, it really wasn't. If I'd said no to chemo and radiation, and later in life I had a recurrence, I would never forgive myself. And with my mom sitting there in the room with me - how could I willingly reduce my chances of survival, which would willingly increase the possibility that my mom would have to bury her child? That's something no parent should ever have to endure. Dr. Fisch gave me statistics, which I like. He said right now, without radiation, my chances of recurrence are about 35%. With the added benefit of radiation, it reduces down to something closer to 15%. At least, I think that's what he said. And if he would tell a beloved family member to do this - then that also told me I should do it. He handed over a pen, and I signed away my consent.
I go back in on the 26th of this month to have the little tattoos done, as well as the X-rays, CT scan, and getting my position on the table right. Having to go in to the doctor every day for 6 weeks is going to be incredibly exhausting. I'm already tired just thinking about it.
A testament to the "chemo brain" side effect of chemo - I had my appointment written down as 11:30 in my day planner, and 10:30 in my phone. If it weren't for my mom coming in my room last night to check and ask if I wanted her to come with me and confirm what time the appointment was, I would've been late. I called this morning just to double check - and sure enough, the appointment was actually for 10:30.
We drove to the radiation center, which is not at the hospital where I get chemo, but a separate building in a different part of town. I wrote the address down wrong, and so I had to call to confirm the address and get directions. We found the building, and walked inside. It's a small center, and as is customary with every new doctor's office, there were forms for me to sign.
I half-assedly read each sheet of paper (I know, that sounds awful. I really should be more diligent about what I'm signing when it concerns my health), and signed where necessary. I gave the receptionist/nurse the clipboard and pen back, and gave her my copay.
A few minutes later, she called my name, and we walked back. I stepped onto the scale, and cringed when I looked at the number. I'm up 14 pounds from when this all started, 2 pounds shy of my heaviest weight. I hate the damn scale. Even worse - I'll have to do it again later today at my follow up doctor appointment with my oncologist. So, twice in one day I'll get mocked with that number staring back at me. The nurse walked us back into a room, took my blood pressure and temperature, and told me the doctor would be right in.
Not too long after she left, in walked a tall, thin, man with glasses. He introduced himself as Dr. Fisch, and shook my hand, then my mom's. He sat down and asked what questions I had. The only real question I had was how much radiation he was suggesting. I was pretty sure I already knew the answer, so I wasn't surprised when he said "30 sessions". My mom, however, was a little shocked. Just as when we met my oncologist for the first time, and I knew he was going to tell me I needed chemo, I knew I was going to need radiation. Dr. Fisch explained his reasoning why he recommended the more gradual treatment for my case - because of my age, the fact that I had a lumpectomy, and also had chemotherapy were all reasons he felt the shorter sessions, but longer time frame were a better fit for me. We then went over possible side effects - fatigue, burning, swelling, blisters, possible lung or heart problems... I held back my tears while he continued to talk. He reassured me that because of my pale complexion, he doesn't think I'll have much discoloration or burning. Apparently my thin build also bodes well for my treatment, though I can't remember the reason why. After, or maybe it was before, describing the possible side effects, he also explained how the radiation would work. The first 25 sessions would be the whole breast, and the last 5 sessions would be "boost" sessions, targeted only on the scar and lump site. I'll be getting little tattoo dots to act as markers for the radiation, and I'll lay in the same position each time. Since my left side is the cancer side, they're going to take x-rays and an in-depth CT scan, to avoid as much contact with my heart as possible. Because I had no lymph node involvement, I won't be getting any radiation in my armpit or my clavicle.
After these explanations, Dr. Fisch stepped out while I took off my tank top and bra, and put on the stylish paper vest. I rolled my eyes as I told my mom "Great, another person added to the list of people that have seen me topless in the last 6 months." My breasts are becoming decreasingly sexualized as this experience moves forward. That list has gotten pretty long, though I haven't officially kept track. Dr. Fisch walked back in, washed his hands, and then started his examination. He felt my neck, my armpits, and then asked me to lay back on the table. He first examined my right, non-cancer, breast and reassured me that nothing felt abnormal - which was music to my ears, because just last week I thought I felt a lump. I'm sure I'm always going to be hyper-aware of any new changes for the rest of my life, so hearing that soothed a little of my anxiety. Then he moved on to the cancer breast, and told me that I've healed really well. He didn't feel any fluid buildup near the scar or tumor area, and nothing else in the breast felt abnormal. Again, a huge sigh of relief. He then walked out and told me to get dressed again.
When he walked back in, we further discussed my treatment plan. He told me that if I were one of his relatives, he'd tell me to do the radiation. Just like with chemo, I knew that saying 'no' was an option, but in a way, it really wasn't. If I'd said no to chemo and radiation, and later in life I had a recurrence, I would never forgive myself. And with my mom sitting there in the room with me - how could I willingly reduce my chances of survival, which would willingly increase the possibility that my mom would have to bury her child? That's something no parent should ever have to endure. Dr. Fisch gave me statistics, which I like. He said right now, without radiation, my chances of recurrence are about 35%. With the added benefit of radiation, it reduces down to something closer to 15%. At least, I think that's what he said. And if he would tell a beloved family member to do this - then that also told me I should do it. He handed over a pen, and I signed away my consent.
I go back in on the 26th of this month to have the little tattoos done, as well as the X-rays, CT scan, and getting my position on the table right. Having to go in to the doctor every day for 6 weeks is going to be incredibly exhausting. I'm already tired just thinking about it.
Sunday, June 7, 2015
Memories hurt.
Everything feels sort of broken right now. I feel so incredibly lost in life, for so many reasons.
Just last summer, it felt like my life was falling into place. I was happy. Happy with myself, who I was becoming, the changes I was trying to make with my outlook on life, with my body and exercising and finally accepting what I saw in the mirror. I was still having trouble with school and deciding whether or not I wanted to finish my Master's degree (something I've struggled with for about 3 years), and I wasn't happy with my job, but I was able to find silver linings to those situations. My job was flexible, it was easy money that helped pay my bills, and I enjoyed the people that I worked with.
I feel like the person that I was turning into last summer is now just a dim memory. I don't smile the same way anymore. I don't laugh as often. I have the job that I spent all last year working towards, and now I regret it. I never look for silver linings anymore. I'm incredibly unhappy with the reflection I see in the mirror, to the point where I avoid looking in mirrors as much as possible now. I am absolutely terrified that I will end up alone and no one will ever love me the way I am.
My last chemo is next Monday, and people keep asking me if I'm excited. I should be, but I'm not. Sure, it's the last time that I'll have to spend 5+ hours in that chair, but it's not the last time I'll have to be there. I still have to go in once every 3 weeks until next March for the Herceptin only infusions, which will take about 30min-1 hour. And yeah, it'll be the last time I'll have to cold cap, and I can't wait to send all that stuff back to the company I've been renting it from, but I still have to wash my hair in cold water until about October, and I'll continue to shed hair. I feel like I'm down to about 50% of my normal hair left, and every time more hair comes out, I cry. I miss being able to wash my hair in hot water, and blow-dry and straighten it. Yesterday I made the mistake of looking at pictures of myself from last fall, and I cried a lot because that version of me is gone. I cried because I had full eyebrows, full and long eyelashes, and my hair was growing long from when I chopped it off last June. That is not who I see now. Every time I complain about these things - my eyebrows, my hair, my weight gain - my mom writes them off as if none of it is a big deal. Last night she told me "You're making it seem worse than it is by dwelling on it." I don't think that's fair of her to say. It downplays my anger and frustration and pain. I'm allowed to feel this way. I was finally starting to love myself, and now I hate what I see because of all that I'm going through. I know that maybe next year I'll be able to look in the mirror again and see the version of me that I saw last year - the one that I was starting to fall in love with, who genuinely was enjoying life and staying positive. Right now, she just seems so far out of reach. A distant memory. Excitement for my last treatment is the wrong word. I don't know what the right word is, but it's not that.
I'm afraid that I'll never get that happy version of me back. Afraid that I will always be alone, with no one to love me. Afraid that my cancer will come back.
Life is never going to be what it once was. And I hate that.
Just last summer, it felt like my life was falling into place. I was happy. Happy with myself, who I was becoming, the changes I was trying to make with my outlook on life, with my body and exercising and finally accepting what I saw in the mirror. I was still having trouble with school and deciding whether or not I wanted to finish my Master's degree (something I've struggled with for about 3 years), and I wasn't happy with my job, but I was able to find silver linings to those situations. My job was flexible, it was easy money that helped pay my bills, and I enjoyed the people that I worked with.
I feel like the person that I was turning into last summer is now just a dim memory. I don't smile the same way anymore. I don't laugh as often. I have the job that I spent all last year working towards, and now I regret it. I never look for silver linings anymore. I'm incredibly unhappy with the reflection I see in the mirror, to the point where I avoid looking in mirrors as much as possible now. I am absolutely terrified that I will end up alone and no one will ever love me the way I am.
My last chemo is next Monday, and people keep asking me if I'm excited. I should be, but I'm not. Sure, it's the last time that I'll have to spend 5+ hours in that chair, but it's not the last time I'll have to be there. I still have to go in once every 3 weeks until next March for the Herceptin only infusions, which will take about 30min-1 hour. And yeah, it'll be the last time I'll have to cold cap, and I can't wait to send all that stuff back to the company I've been renting it from, but I still have to wash my hair in cold water until about October, and I'll continue to shed hair. I feel like I'm down to about 50% of my normal hair left, and every time more hair comes out, I cry. I miss being able to wash my hair in hot water, and blow-dry and straighten it. Yesterday I made the mistake of looking at pictures of myself from last fall, and I cried a lot because that version of me is gone. I cried because I had full eyebrows, full and long eyelashes, and my hair was growing long from when I chopped it off last June. That is not who I see now. Every time I complain about these things - my eyebrows, my hair, my weight gain - my mom writes them off as if none of it is a big deal. Last night she told me "You're making it seem worse than it is by dwelling on it." I don't think that's fair of her to say. It downplays my anger and frustration and pain. I'm allowed to feel this way. I was finally starting to love myself, and now I hate what I see because of all that I'm going through. I know that maybe next year I'll be able to look in the mirror again and see the version of me that I saw last year - the one that I was starting to fall in love with, who genuinely was enjoying life and staying positive. Right now, she just seems so far out of reach. A distant memory. Excitement for my last treatment is the wrong word. I don't know what the right word is, but it's not that.
I'm afraid that I'll never get that happy version of me back. Afraid that I will always be alone, with no one to love me. Afraid that my cancer will come back.
Life is never going to be what it once was. And I hate that.
Saturday, June 6, 2015
Disappointment
Today I finally decided to treat myself to a massage. I've been wanting to get one for the last two months or so, and today I drove myself over to a little place that some friends suggested. I was hoping for 90 minutes of relaxation. Time where I could just indulge a little bit and not worry about anything, and let my sore muscles have some relief.
That's not exactly what happened.
I only have about 30% of my normal eyebrows left and I refuse to leave the house without my eyebrows done, so the only makeup I put on was eyebrow pencil. Before I laid down on the table, I was worried about them rubbing off onto the paper face thing. Then, when I laid down, my breast hurt from the pressure of laying on it. It's still incredibly sensitive from my surgery, even though it's been 6 months. Every time I've brought this up to my doctors, they've said that the pain is likely from scar tissue buildup, and that it may take up to a year for it to go away. Or it may never go away at all. So, even though I was supposed to be there for a relaxing massage, my body stayed tense on the table because I was in pain. In addition to my breast hurting, my port was also pressing into the table on the opposite side of my chest, and that hurt as well. I tried really hard to just breathe through the pain, relax, and enjoy the massage.
The guy walked into the room (I really don't care that it was a guy. My thought process was they have stronger hands, and I'm never going to see him again anyway, so who cares) and put the sheet all the way over my head and then started massaging my muscles over the sheet, which hurt. I've never had a massage where they've done that, and the rough sheet being rubbed against my skin was really uncomfortable. Then he started rubbing my head through the sheet and I tensed up even more, because I started worrying about him pulling out what's left of my hair. I tried to let it go, and just hope that my hair wouldn't fall out because of him rubbing my scalp, but I knew for sure he was causing more hair to come loose. Finally, he started massaging my back with lotion, and I tried to let the head rubbing go. Then, my nose started dripping, and I knew that it was likely bleeding. I've had bloody noses constantly as a side effect of chemo, so why would today be any different? It wasn't a really bad one - just runny with a little bit of blood. I tried to move my head to wipe it on the paper face protector. Then the masseuse started rubbing my neck, and kept pulling on my hair that had fallen out of my bun due to his head scrubbing. I heard a few strands snap off, and just cringed. He tried to move it out of the way a few times, but it kept falling back onto my neck, and more strands would fall out. When he started massaging my left arm, I was cringing. From my shoulder to my elbow, my arm is still numb from surgery since they took out a few lymph nodes. I was hoping the massage would help make it feel better, but it mostly just hurt.
In addition to being tense the entire time due to my worries about my hair, my eyebrows, and my bloody nose, I couldn't get my mind to quiet down (always a problem for me). So, my head was racing with these worries, and then would wander off to the stress I've been having because of work, and then would wander off to memories of someone who I'd really rather forget, or at least not have interrupt my thoughts anymore, then I'd admonish myself for not shutting the fuck up and trying to enjoy the massage. And so it continued for 90 minutes.
The masseuse left the room at one point, and so I removed the sheet from my head to put my hair back into a bun. He walked back in and tried to take the hair tie from me, but I insisted on moving my hair up of my shoulders so he'd stop pulling on it. He then wiped the lotion off my back with hot towels, and I thought we were done. Instead, he had me turn over, and started massaging my head again. I was freaking out because he was really scrubbing hard, and I was practically counting the strands of hair that he was pulling out of my scalp. I finally spoke up and asked him to stop scrubbing my scalp. He didn't speak much english and so he just laughed and kept scrubbing. I asked again, and he kept going. Finally, I moved my head up from the table and away from his hands and said "Please stop. I don't want you touching my head. My hair is falling out." So then he moved on to my face, and started massaging my jaw. He moved up to my eyes, and I could feel that he was wiping off my eyebrows. That's about the point when I could feel the tears rolling down my face. First, one tear down my left cheek, then the other made it's way down my right cheek, despite my best efforts to will it to stay in my eye. He moved his hands down to my shoulders, and so I had to tell him not to touch my port and moved the sheet to show him. Luckily, this time, he understood and didn't touch it. Finally, he said we were done and left the room. I started crying openly as soon as the door shut behind him. I got up, put my clothes on, and found tissue to wipe my face with. Then I looked in the mirror, and my thoughts were confirmed - my drawn on eyebrows were completely wiped off. I held back more tears, and walked out of the room. The masseuse was waiting in the hallway with a cup of water for me, and I tried to hide my anger and frustration, and said thank you.
I had plans of going to the mall after the massage, but was just so frustrated by this experience, that I decided not to. I sat in my car and drew on new eyebrows, went to starbucks for coffee, and drove home, trying not to cry more. I should have known better than to attempt a massage while having so many issues. I was just really hopefully that it would be something that would lift my mood, instead of making it worse. I hate feeling like cancer has taken away so much from me. I know that saying that makes it seem like I'm playing the victim - but it's so fucking true. Cancer is the focal point of my life right now, and it's all consuming. It plays a factor in everything I do. Earlier this week, my friend Paulina and I were going to go zip lining in Santa Cruz because I'd been wanting to go, but I felt so shitty after last weeks chemo, that I didn't want to risk over doing it. I knew my body couldn't be trusted on a two hour zip lining tour to not have a sudden urge of diarrhea. Instead we went to Half Moon Bay and walked around downtown, then sat at the beach, and had lunch. It made for a nice, relaxing afternoon. Later that night, I realized it was the 6 month mark since I'd been diagnosed. I couldn't have thought of a better way to spend it - enjoying the nice weather, watching seals sunbathe on the beach, and catching up with a good friend.
I probably won't be getting another massage any time soon. At least, not until my eyebrows have fully grown back, and my hair sheds less. And most likely not at this same place. I'm mostly just angry that I tried to do something nice for myself, and it made me just more pissed off about my current situation. I only have nine days left until my last chemo - but my overall journey is far from over.
That's not exactly what happened.
I only have about 30% of my normal eyebrows left and I refuse to leave the house without my eyebrows done, so the only makeup I put on was eyebrow pencil. Before I laid down on the table, I was worried about them rubbing off onto the paper face thing. Then, when I laid down, my breast hurt from the pressure of laying on it. It's still incredibly sensitive from my surgery, even though it's been 6 months. Every time I've brought this up to my doctors, they've said that the pain is likely from scar tissue buildup, and that it may take up to a year for it to go away. Or it may never go away at all. So, even though I was supposed to be there for a relaxing massage, my body stayed tense on the table because I was in pain. In addition to my breast hurting, my port was also pressing into the table on the opposite side of my chest, and that hurt as well. I tried really hard to just breathe through the pain, relax, and enjoy the massage.
The guy walked into the room (I really don't care that it was a guy. My thought process was they have stronger hands, and I'm never going to see him again anyway, so who cares) and put the sheet all the way over my head and then started massaging my muscles over the sheet, which hurt. I've never had a massage where they've done that, and the rough sheet being rubbed against my skin was really uncomfortable. Then he started rubbing my head through the sheet and I tensed up even more, because I started worrying about him pulling out what's left of my hair. I tried to let it go, and just hope that my hair wouldn't fall out because of him rubbing my scalp, but I knew for sure he was causing more hair to come loose. Finally, he started massaging my back with lotion, and I tried to let the head rubbing go. Then, my nose started dripping, and I knew that it was likely bleeding. I've had bloody noses constantly as a side effect of chemo, so why would today be any different? It wasn't a really bad one - just runny with a little bit of blood. I tried to move my head to wipe it on the paper face protector. Then the masseuse started rubbing my neck, and kept pulling on my hair that had fallen out of my bun due to his head scrubbing. I heard a few strands snap off, and just cringed. He tried to move it out of the way a few times, but it kept falling back onto my neck, and more strands would fall out. When he started massaging my left arm, I was cringing. From my shoulder to my elbow, my arm is still numb from surgery since they took out a few lymph nodes. I was hoping the massage would help make it feel better, but it mostly just hurt.
In addition to being tense the entire time due to my worries about my hair, my eyebrows, and my bloody nose, I couldn't get my mind to quiet down (always a problem for me). So, my head was racing with these worries, and then would wander off to the stress I've been having because of work, and then would wander off to memories of someone who I'd really rather forget, or at least not have interrupt my thoughts anymore, then I'd admonish myself for not shutting the fuck up and trying to enjoy the massage. And so it continued for 90 minutes.
The masseuse left the room at one point, and so I removed the sheet from my head to put my hair back into a bun. He walked back in and tried to take the hair tie from me, but I insisted on moving my hair up of my shoulders so he'd stop pulling on it. He then wiped the lotion off my back with hot towels, and I thought we were done. Instead, he had me turn over, and started massaging my head again. I was freaking out because he was really scrubbing hard, and I was practically counting the strands of hair that he was pulling out of my scalp. I finally spoke up and asked him to stop scrubbing my scalp. He didn't speak much english and so he just laughed and kept scrubbing. I asked again, and he kept going. Finally, I moved my head up from the table and away from his hands and said "Please stop. I don't want you touching my head. My hair is falling out." So then he moved on to my face, and started massaging my jaw. He moved up to my eyes, and I could feel that he was wiping off my eyebrows. That's about the point when I could feel the tears rolling down my face. First, one tear down my left cheek, then the other made it's way down my right cheek, despite my best efforts to will it to stay in my eye. He moved his hands down to my shoulders, and so I had to tell him not to touch my port and moved the sheet to show him. Luckily, this time, he understood and didn't touch it. Finally, he said we were done and left the room. I started crying openly as soon as the door shut behind him. I got up, put my clothes on, and found tissue to wipe my face with. Then I looked in the mirror, and my thoughts were confirmed - my drawn on eyebrows were completely wiped off. I held back more tears, and walked out of the room. The masseuse was waiting in the hallway with a cup of water for me, and I tried to hide my anger and frustration, and said thank you.
I had plans of going to the mall after the massage, but was just so frustrated by this experience, that I decided not to. I sat in my car and drew on new eyebrows, went to starbucks for coffee, and drove home, trying not to cry more. I should have known better than to attempt a massage while having so many issues. I was just really hopefully that it would be something that would lift my mood, instead of making it worse. I hate feeling like cancer has taken away so much from me. I know that saying that makes it seem like I'm playing the victim - but it's so fucking true. Cancer is the focal point of my life right now, and it's all consuming. It plays a factor in everything I do. Earlier this week, my friend Paulina and I were going to go zip lining in Santa Cruz because I'd been wanting to go, but I felt so shitty after last weeks chemo, that I didn't want to risk over doing it. I knew my body couldn't be trusted on a two hour zip lining tour to not have a sudden urge of diarrhea. Instead we went to Half Moon Bay and walked around downtown, then sat at the beach, and had lunch. It made for a nice, relaxing afternoon. Later that night, I realized it was the 6 month mark since I'd been diagnosed. I couldn't have thought of a better way to spend it - enjoying the nice weather, watching seals sunbathe on the beach, and catching up with a good friend.
I probably won't be getting another massage any time soon. At least, not until my eyebrows have fully grown back, and my hair sheds less. And most likely not at this same place. I'm mostly just angry that I tried to do something nice for myself, and it made me just more pissed off about my current situation. I only have nine days left until my last chemo - but my overall journey is far from over.
Friday, June 5, 2015
music
I was raised on a variety of different genres of music. Blues, R&B, Alternative Rock, Oldies, Reggae, Pop, Rock, and so much more. It's always kind of "spoken" to me. Music has a way of influencing my moods in a way that not much else can. Other than maybe sitting by the ocean and watching the waves. I often forget the effect music has on me, but tonight it came back full force. I've spent the last hour updating my iTunes library, adding music to my phone, and finding new songs to add to my playlist.
When my brother and I were younger, my dad would drive us to Petaluma to visit my grandparents. I remember it being a looooooong drive, with a lot of open fields, the smell of cow manure, a huge boulder that looked like an elephant, and this one stretch of road lined with trees. I remember listening to Bob Marley on tape on those drives. Now whenever I hear Bob Marley, I remember those drives and all of us singing along in the car.
My Friday night might not be very exciting, but this small task of adding music to my playlist, and listening to CD's from junior high and high school are making me smile. These moments where I can laugh at the memories these songs have created for me - my whole 8th grade class singing at a dance, singing at summer camp in front of the entire school with three of my friends, screaming out of the windows of the car on a friday night in high school after eating ice cream with friends - they help me remember that my life hasn't been bad.
I hope that I find more songs along the way to keep reminding me of this. Without music to remind me, I'd likely forget a lot of happy moments.
Monday, June 1, 2015
Time moves forward
I figured I should write something since I haven't posted in a while.
My chemo last week went as it usually does. I got my blood work done on Sunday, then woke up early on Tuesday (since Monday was a holiday), got the dry ice I needed for the cold caps, came home, got ready, and off to Kaiser we went. Once again, we didn't start on time because we were waiting for a response from my doctor as to whether they were going to keep the Taxotere at the lower dose, or kick it back up since my liver values improved. My oncologist decided to increase the drug again, and then we got started and went along as usual.
This past week has been really hard. I usually have the day after chemo off from work, which helps me relax, catch up on sleep, and decompress. But thanks to the holiday, I didn't have that opportunity this time, and I didn't realize how much I really needed that extra day to recuperate until now. This whole week I've been dealing with an intense amount of heartburn, nausea, diarrhea (sorry if this is TMI, but if that's the case, you really shouldn't be reading my blog. I talk about poop more than is probably socially acceptable. And, I'm trying to be open and honest here), and lack of sleep. Saturday night my legs were tingling and in pain, so I took a Norco just to feel numb. I ended up running into something on the wall in our kitchen. My family all reacted quickly to see if I was okay, and I just stood there laughing AND crying. It is literally the most frustrating experience to not have control over what is happening to your body, especially for an extended period of time. I think people assume that chemo gets easier the more you go, but it's quite the opposite. The effects are cumulative - so my exhaustion and fatigue get worse every time. I've been taking Prilosec daily for the heartburn, and it seems to not even be effective anymore. I wiped off my makeup last night with a wipe, and the gentle pressure I used caused me to have a nosebleed. I literally can't do anything how I normally would without the fear that something might happen that I can't control. Today, I've dealt with diarrhea all day, and my ass hurts. I finally took an Imodium a few hours ago, so hopefully that helps. It really sucks to take a pill for everything when I hate taking pills.
Exactly two weeks from today I'll be sitting in the chair for my last chemo treatment. I wish I could say I'll be in the chair for the last time, but that's not the case. I'm still going to have to go in for the Herceptin infusion once every 3 weeks until next March, but that infusion will only be 30-60 minutes long, and the side effects much more manageable. A few people have asked me if I'm excited to be done, and yeah, in a way I am. It will be nice to not feel like shit all the time, or have lettuce and corn come out of my ass undigested, or break out into bad acne due to them increasing a drug.. But my treatment won't be done. Only the chemo aspect will be done. Next week I have my consultation for radiation, and from what I've heard, the standard is about 25 rounds. And that's daily (mon-fri). That's just going to be exhausting and uncomfortable. I'm not looking forward to it (but again, who would?). Alicia made a good point last night - she said it's like looking down the barrel of a gun. My very life is right before my eyes, and I'm at the mercy of the person who's holding the trigger (aka - my doctors).
I just realized that today is the 6 month mark since I was diagnosed. It is crazy to think about everything I've done in that time - two biopsies, lumpectomy, IVF (I still need to post about that experience), port surgery, multiple blood draws, seeing a therapist, five rounds of chemo....
For the first time, I have to admit, I am pretty impressed with all that I've been through and accomplished during that time.
My chemo last week went as it usually does. I got my blood work done on Sunday, then woke up early on Tuesday (since Monday was a holiday), got the dry ice I needed for the cold caps, came home, got ready, and off to Kaiser we went. Once again, we didn't start on time because we were waiting for a response from my doctor as to whether they were going to keep the Taxotere at the lower dose, or kick it back up since my liver values improved. My oncologist decided to increase the drug again, and then we got started and went along as usual.
This past week has been really hard. I usually have the day after chemo off from work, which helps me relax, catch up on sleep, and decompress. But thanks to the holiday, I didn't have that opportunity this time, and I didn't realize how much I really needed that extra day to recuperate until now. This whole week I've been dealing with an intense amount of heartburn, nausea, diarrhea (sorry if this is TMI, but if that's the case, you really shouldn't be reading my blog. I talk about poop more than is probably socially acceptable. And, I'm trying to be open and honest here), and lack of sleep. Saturday night my legs were tingling and in pain, so I took a Norco just to feel numb. I ended up running into something on the wall in our kitchen. My family all reacted quickly to see if I was okay, and I just stood there laughing AND crying. It is literally the most frustrating experience to not have control over what is happening to your body, especially for an extended period of time. I think people assume that chemo gets easier the more you go, but it's quite the opposite. The effects are cumulative - so my exhaustion and fatigue get worse every time. I've been taking Prilosec daily for the heartburn, and it seems to not even be effective anymore. I wiped off my makeup last night with a wipe, and the gentle pressure I used caused me to have a nosebleed. I literally can't do anything how I normally would without the fear that something might happen that I can't control. Today, I've dealt with diarrhea all day, and my ass hurts. I finally took an Imodium a few hours ago, so hopefully that helps. It really sucks to take a pill for everything when I hate taking pills.
Exactly two weeks from today I'll be sitting in the chair for my last chemo treatment. I wish I could say I'll be in the chair for the last time, but that's not the case. I'm still going to have to go in for the Herceptin infusion once every 3 weeks until next March, but that infusion will only be 30-60 minutes long, and the side effects much more manageable. A few people have asked me if I'm excited to be done, and yeah, in a way I am. It will be nice to not feel like shit all the time, or have lettuce and corn come out of my ass undigested, or break out into bad acne due to them increasing a drug.. But my treatment won't be done. Only the chemo aspect will be done. Next week I have my consultation for radiation, and from what I've heard, the standard is about 25 rounds. And that's daily (mon-fri). That's just going to be exhausting and uncomfortable. I'm not looking forward to it (but again, who would?). Alicia made a good point last night - she said it's like looking down the barrel of a gun. My very life is right before my eyes, and I'm at the mercy of the person who's holding the trigger (aka - my doctors).
I just realized that today is the 6 month mark since I was diagnosed. It is crazy to think about everything I've done in that time - two biopsies, lumpectomy, IVF (I still need to post about that experience), port surgery, multiple blood draws, seeing a therapist, five rounds of chemo....
For the first time, I have to admit, I am pretty impressed with all that I've been through and accomplished during that time.
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