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Showing posts with the label Incurable

Good Cries and Blessings

I think everyone needs a good cry once in awhile. Unfortunately for me, I think I get more than my fair share of tears. I don't think most people realize how tough it is to live with cancer and how it affects every single aspect of your life. To be honest, I don't think people want or care to know. People are happy living in their own bubbles which is fine but reach out every once in awhile. That's all I'm saying. I just wish that I could go on an actual vacation to leave all of this behind for a few days and enjoy myself. Hawaii sounds nice, doesn't it?  So far being home on medical leave hasn't been as relaxing as I hoped. It's nice to actually get a little more rest and my pain isn't bothering me as much but there's still the financial stress that just won't go away. It's difficult not to worry about it but I'm really trying not to let it take over my thoughts on a daily basis. I should go out on walks more so that I can clear my min...

Sad...

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I've been feeling kind of sad for the past few days. A few women from our Metastatic community passed away and it sucks. They were too young to die and they were taken from their families because of this stupid disease. It scares me. I knew that by joining support groups for Metastatic Breast Cancer patients I would see this happen but it still really, really sucks. I think it's also hitting me hard because they were all so young and I feel like it's all happening so fast. I feel like one minute you're fine and the next you're not.  I'm fine now but for how long? Months...years? I don't know. I know that we will all die eventually but it's sooo much different when you face death every day. That whole analogy of how we could all be hit by a car tomorrow and die is just frustrating because it's NOT the same as being told you are dying and even given a timeline. In one scenario it's sudden. You're here and then you're gone. You probably do...

Time Flies

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So, I've been on leave for a month already. It went by so fast! Time just seems to fly by as an adult. I remember being a kid and it felt like a school year was FOREVER! Didn't it? Now it seems like we just celebrated a New year and it's now almost April. It also seems like it was yesterday that I found the lump on the breast that betrayed me but on April 6 it will be 3 years! 3 years of a mind-fucking experience. The sad part is that it's never going to end but at least I'm alive. I'm still here. For now. And I'm okay with that. And don't give me that shit about how if I stay positive I'll be okay because it's not about staying "positive", it's about learning to live a new normal. I'm just hopeful and I try to live my every day life as normal as possible for as long as I can. And also just for the record: I am NOT giving up sugar or coffee. One thing I will do though is try to exercise more often. I used to exercise at least 4 ...

Medical Leave

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Getting my infusion. #livingwithcancer I've been on medical leave for a couple of weeks now and I've been sick for half that time. When I get sick now, it just lasts longer thanks to my compromised immune system. I guess it could be worse. I'll take a cough/cold any day as long as it doesn't progress to pneumonia. It's actually been kind of boring being home because since I've been sick I haven't had much time to go hiking or run my errands. I've just been feeling so tired lately and my bones ache so much especially my stupid shoulder. I wish I could say that it will get better and I know that it will, temporarily anyway. At least my liver pain has decreased so I guess that's good. I think the stress from work was just really aggravating all of my symptoms so it's nice to have this break to just focus on feeling better. The highlight of my leave so far is getting my cancer treatments. And thankfully Cruz's dad has stepped up to the pla...

Hope

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This past weekend was exciting! I went to the YSC 2015 Summit in Houston, Texas. There was some pinkwashing present but I don't blame the people there. They haven't been educated enough about metastatic disease and the likelihood of recurrence. It felt really good to get to meet people going through metastatic breast cancer with me. It just really sucks that this is how we meet. I also got to go on a plane for the first time ever and I guess it wasn't too bad. A little bumpy due to turbulence and I would get a head rush every once in awhile but I made it. I also got to see family. That was also one of the best parts of the trip. I was hoping to get a little more information out of the whole trip but I guess I still have Philadelphia. I'll be going to a metastatic breast cancer conference given by Living Beyond Breast Cancer. I hope this conference is better since it's focus is Metastatic Breast cancer and the YSC conference was mostly focused on breast cancer in g...

First Plane Ride!

Tomorrow I'm going on my first ever flight...and I'm kinda scared. That's right. I'm in my 30's and I've never been on a plane. We were too poor to afford plane rides when I was younger and once I got older we would always drive everywhere. When we went to Mexico to visit family we drove. We took the train once and there were bus rides too. Now that I'm older I've driven through many western states to get to Colorado and Wyoming to visit family. I guess I figured that I better finally get on a plane before I die.  And for my first ever plane ride I'll be going to the YSC Summit which is a conference for young women affected by breast cancer in Houston. At least it will be a short flight for my first flight. And I made sure to get a nonstop flight so that I'm not freaking out for too long. I'll also be sure to take an Ativan to calm my nerves. I guess I figure that so much shit has happened to me that God better take pity on me and let me ha...

Does Anyone Still Care?

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The good news is that I had my scan on Monday and everything is good. Still NED! I'm really happy about that but at the same time I feel guilty because I'm doing so well. There are other women in my cancer groups that aren't doing so well and it sucks. Cancer sucks! Too many young people dying from this stupid disease. Eventually it'll be my turn but I hope that it's a long time from now.  Sometimes I wonder how many people still even care about my updates. I think people take it for granted that my scans have been good for so long and they forget that it's never really over for me. It's a constant battle physically, emotionally and mentally. Lately it's been extremely overwhelming but this bit of good news this week has already lifted some of the heavy weight off my shoulders. My oncologist and I have come to the decision that it's time for me to take some time to regroup and get a break from the stress from my job. It's not the job that's...

I Need to Catch a Break

I'm feeling overwhelmed. This past week has been horrible and it's getting to the point where I don't know how much more my mind and body can take. I need a break. A nice long break to just relax and focus on my health. It's not fun working in a place that just isn't supportive. Most of my co-workers are amazing to work with but it's not right to constantly work in fear. It's not right to have to come home in tears at least once a week. All this stress just isn't good for me. I have to remind myself to take deep breaths and not let the politics get to me so much but it does. I just have to remember that I'm there to take care of my patients and I do an amazing job with them. I want my patients to be happy and move towards health so that they can go home. It's been a really difficult year and I wish that people would back me up but I get it, they're afraid too.  God, I just pray that I will get through this. And I pray that my upcoming scan ...

Random Thoughts

Do you ever wonder who will remember you when you die? Or who will even care that you're gone? Obviously my family will care and they'll be sad but sometimes I wonder if anyone else would even care if I died. What will people remember me for? Will they even remember me? Or would I just become "that girl that died from cancer". I know, doesn't sound like a very happy topic but these are the kinds of things you think about when you're smacked in the face with this stupid diagnosis. I'm even thinking about starting to put away money for my funeral so that I'm not a burden when I'm gone. I'm not even completely sure if I want to be buried or cremated. So far, cremation is winning. It's cheaper and it's not like very many people will visit my grave 100 years from now. But then, where will my ashes go? So many things to sort out and it sucks that this could happen sooner rather than later. Maybe I'm just thinking too much because I have...

Busy Day

I had my infusion this morning and I am so tired! I kept falling asleep on and off the whole day. I think I only ate once because I couldn't keep my eyes open. Today was the first day that I had IV Benadryl push instead of in a piggyback IV and I have to say that I think I felt it more. Most people don't need Benadryl for Herceptin or Perjeta but I get a crazy itching that I can't stand and the Benadryl helps. I'll take the itching and Benadryl over cancer any day. Today was also my first day back at the main infusion center at UCSF. I don't like it there. It doesn't feel as personal but they closed the overflow wing which is where I loved to go because they had only two patients to a room and it felt more intimate. The infusion center I went to today has 4 people to a room and it's so crowded and noisy. Plus, I was sitting next to a grumpy old man that was complaining about everything. He started yelling because someone answered their cell phone. She wasn...

Changes...

Being a single mom is hard but being a single mom with cancer and living in the Bay area is even harder. Sometimes I wish I could just come home and relax but there's no such thing as free time these days. If I'm not at work then I'm at an appointment or running errands. Sleeping in? I don't know what that is anymore. I think that disappears the moment you have kids. ;) Except now it's coupled with anxiety-induced insomnia. I think the only days when I actually feel rested are my infusion days. So, thank you Benadryl for allowing me a day of rest every 3 weeks.  I think I just have to accept that I will never have the energy I once had or be a power mom and that's okay. I don't have the free time to be able to volunteer for school activities. I may be able to go on the occasional field trip but that's about it. Sometimes I wish I could help out in class but I just don't have time. I've also been using a lot of free time looking for a different ...

Bad Day but moving on....

Definitely a bad day today but hopefully tomorrow is a better day. Sleep would help. Oh yeah, and good news. My life is spent waiting so, it's getting a little old. I just need to know. Yes or no. Please God, let it be a yes. 

New Year, New Deductible

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It's a new year and with it comes more tests and more treatments. Sucks. It also means the beginning of deductibles. Really sucks! The beginning of the year comes with double the expenses until I meet my deductibles for my medical insurance. In some ways it's okay because I meet those deductibles pretty quickly but it also means a large amount of money all at once. Something I cannot afford but I have no choice but to take on more medical debt. It's either that or my life. I've been trying really hard to earn extra money but so far it hasn't worked out too well. Won't stop trying though. How many more jobs should I have to take on to get through this? It's really difficult but I have to think of something.  I don't want to spend all my time working because then I'm going to miss out on being present for Cruz.  Sigh... I'm going to try not to let this take over my thoughts. I want to focus on the good things that are happening right now. Obvio...

Another Year

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I had a really good holiday this year. I got to spend time with my family and my wonderful Cruz. With the help of his Papi he got me a locket for Christmas with his picture in it. I have to copy one of his baby pictures so I can shrink it down to locket size that way I can have his baby picture on one side and a current picture on the other. I also got to eat tamales! It was also nice to have a few days off from work. Too bad I had an infusion appointment to interrupt but that's okay. It wasn't too bad. At my next infusion I will have an MRI of my shoulder to finally find out what is causing the pain. These are the things I have to look forward to. Another year gone by and more appointments to come in my future.  I can't believe another Christmas has gone by and that in less than a week it will be 2015. I'm hoping that this year ends on a really good note. A few good things are happening for me right now and I'm just hoping that they don't blow up in my face. ...

Dye Study

I had the dye study done on my port on Thursday and my port is doing fine which is good because I love my port. I don't want to deal with having to take it out and get a new one. Makes it really convenient to get blood draws and IV medication. It was strange seeing the x-ray on a big screen. I could see my heart beating while they were lining up the machine. Right before Christmas I'll have my infusion of Herceptin and Perjeta. I'm thinking of taking the nurses some chocolate or cupcakes since it sucks having to work on holidays and I appreciate all their help.  Can't wait for Christmas. Mostly because of the food and hanging out with family. And I LOVE seeing the kids open their presents. It'll be a nice break from all the work stress. Hopefully my shoulder doesn't act up on me. I wasn't able to get an appointment for the MRI of my shoulder before the new year but that's okay as long as it's finally happening. I know that my last PET-CT scan came ...

Pain, MRI & Stress

I'm finally going to get an MRI of my right shoulder. I'm so excited! Maybe I can finally figure out what the hell is wrong with it. These past few nights the pain hasn't let me sleep well. It's gotten worse because now my elbow and wrist hurt too. The PET-CT scans never pick anything up but maybe the MRI will show something. Even if the cancer has spread to my bones at least I would know what is causing the pain. Better to catch it now before it takes a hold of my body again. So, I'll keep you posted once I get it done and get the results. Tomorrow I will get the dye study on my port to make sure it's functioning correctly. It's a relatively quick procedure. The worst part is that I'll be driving back home in the middle of traffic and because I switched shifts I'll have to work a 12 hour shift on Friday. Not looking forward to that but gotta do what I gotta do. In other news, today didn't start off too well. I found out that a fellow cancer fi...

Grateful but...

Sometimes I think I should just go home. I don't feel like I belong out here. My life here is a very lonely one and I'm just not used to the quietness. I think I can count my close friends out here with one hand but still, most days are spent at work or home with Cruz. It's not for lack of trying but I guess I'm just at a different point in my life than most people. People don't want to be reminded of their own mortality and I think people may be uncomfortable with how realistic I am about my diagnosis. For me, I just find it to be educational because most people don't understand the meaning of a Stage IV diagnosis. I find that I always have to reiterate the fact that it's INCURABLE. It's true that I don't look sick. It's true that my hair is growing back. It's true that I don't need systemic chemo at this moment but I'm still taking medication. Getting an IV infusion of monoclonal antibodies every three weeks isn't a minor thin...

Life Goes On

Trying to make changes in my life recently. Obviously the stress is taking a toll on me but I'm trying really hard to keep going. I think I'm realizing that I don't want to reach out to people anymore. I still feel alone and I don't know how much longer I can take it. I don't want to make the first move anymore. It's just me and Cruz most days. I'm also trying to relax more on my days off. Today was one of those days. There are so many errands that I should have done today but instead I chose to just stay home, relax under the covers and take a nap. I feel like I'm always on the move. I'm always doing something and I have to just slow down and take care of myself. After all, my archangel is looking after me and I should do the same. I do have to get my Christmas shopping done though. This year I'm going small and just buying presents for the kids and that's even a stretch but I love my nieces and nephew and I'd like to get them at least...

Spirituality

I have to share this story with you today because it made me feel really g ood. I walked into my patient's room today to check his blood sugar at lunchtime and his caregiver is in the room visiting him. The doctor was talking to my patient when all of a sudden his caregiver turns to me and says "I'm sorry but I have to tell you that a spirit, this energy, just walked into the room with you. It's taking up this whole room." Both the doctor and my patient stopped talking and they turned to the caregiver who went on to say that the energy was a positive one and it was lighting up the room around me; protecting me. My patient then told me that I should believe him because his caregiver has the gift of being able to sense spirits.  If you know me, then you know I absolutely believe in ghosts, spirits and basically anything spiritual. When the caregiver told me this today it made me feel that maybe God really is protecting me during this difficult time. Whether it be ...

I Should Be Happy

After receiving such great news I should be happy. I should be over the moon happy but instead I feel kind of numb. Obviously I'm grateful that I am still NED. Gives me hope that I will be here to see my grandchildren one day. Unfortunately I'm letting all this happiness be overshadowed by stupid shit. I'm really worried about my financial situation. I'm running out of savings and I'm literally living paycheck to paycheck right now. I'm not sure how much longer I can continue on like this. The bills are taking a toll on me. If I didn't have the medical bills everything would be manageable.  I'm also angry that I'm doing this alone. I mean, I know I can do it alone but I shouldn't have to. Am I being played? I don't know. I hope not because I'm tired of being hurt. Seems to happen to me on a regular basis but I guess it's my own fault for allowing it. And then there's work. I love being a nurse but I don't want to go work in ...