Sometimes it feels like nothing has happened over the last few weeks, but really everything has happened. On Monday I turned 32, I drove for the first time in two months, I went back to work and I had my first drink since surgery (naturally it was champagne, it was my birthday). I have more energy every day. I’m moving back upstairs. I haven’t had a mini meltdown in over a week. My life is by no means what it was, but it is more normal. I’m not sure it ever will be the same again. On Wednesday I had the best doctor appoint I’ve had in I don’t know how long. My blood counts are normal! Not on the very high end of normal, but normal. I am finally gaining weight which is not something I ever thought I would be excited about, but I am. I won’t get my first post surgical scans until 12 weeks so I get to go a whole month without going to see a doctor. I haven’t done that since any of this started. I am in a holding pattern once again, but it doesn’t seem as bad as some of the other ones. I have no idea what the scans will show. I don’t know what next steps will be, but I’m pretty sure I don’t have to do any more chemo.
Going back to work has been an adjustment. I got a little to used to doing nothing. It is really nice to use my mind and to be around people. I missed my coworkers. I went in four partial days and worked from home the best. Once I have the energy for full days at work I might balance full days at home and at work instead of having to drive in every day. It’s definitely going to be a figure it out as I got thing. Once again I’m incredibly grateful for such a great workplace and great coworkers.
This weekend two of my DC friends came to visit. One of them I had not seen in years. I will always be grateful for friendships where it doesn’t feel like time has passed. I was able to do somethings and sometimes we just sat around my house and watched mediocre movies.
One thing I never really talked about publicly was losing my hair. I didn’t lose any of my hair on the first chemo drug (the first 5 rounds), but with the second, strong drugs my hair began thinning. And for someone who has had thick curls her whole life this was something new and unexpected. For a long time I just ignored that I was shedding at an alarming rate. In early December I had a breakdown over my hair and went and met with the hair and wig specialist at the Cancer Center. By that time I had maybe a quarter of my hair left and I didn’t feel like me anymore. She helped me find something that felt like me. I know some people noticed. Some people may not have. Some just thought my hair was darker. Now that I am three months removed from chemo I have MY hair growing back. It is thick and I’m pretty sure there is curl or wave in it. I desperately want my long curls back, but that is going to take a long time and I have almost accepted this. I have stopped wearing the wig at home. A few friends got to see me with it and without a hat, but I was still uncomfortable going out in public. My wonderful friends convinced me to go out as me this weekend and I realized I am more comfortable with my short hair than I am the wig. So this is me and someday I’ll have my long curls back.
I’ve been home for a week now. There is really nothing quite like home after being in the hospital for 5 weeks. I was initially told my stay would be 8-10 days. My first stay was 13. Then I was home 3 days and back in for a week and then home for less than 24 hours and back in for two weeks. To say I’m happy to be home would be an understatement. I have a bit more freedom. No one is waking me up several times a night. I have my kitties, who will not leave my side. It almost gets a bit suffocating at times.
I don’t know what I initially expected. I listened to the doctor, but this was so much worse. I keep having to remind myself that my body went through a 12 hour surgery and needs time to recover. I came home on IV antibiotics for whatever infection I managed to catch. It’s not so bad, but I can’t wait for it to be over. One of the meds I have to get three times a day.
I’m supposed to be in Italy right now showering my niece in love and spending time with my brother and sister-in-law, but that obviously couldn’t happen. The Delta app mocked me on Friday and kept reminding me to check in my for my cancelled flights. Thankfully I was smart enough to buy travel insurance when I bought this ticket way back in November. There’s really nothing more I want right now than a hug from my brother and I don’t know when I get to see him again. I don’t know when I can go visit. I don’t know when they might come back to Wisconsin.
On Saturday I went and got a pedicure with my mom and omg did it feel good to do something normal. Except as we were sitting there I was staring at my legs and starting lamenting all the muscle I have lost. I worked so hard to get strong in the year and half before all this started. I miss my strength. I miss being able to be self sufficient. I miss the old me.
I know I’m making progress, but it feels so slow. I want to be able to do more. At least I’m starting to notice improvements without my parents having to point them out. On that note, my parents have been nothing short of amazing. They basically put their lives on hold and have been there every step and misstep I’ve made. I will never be able to thank them enough for that.
All in all, I think I’m doing pretty well right now. I am walking more and it’s not quite as difficult. I am socializing again and that is wonderful. I’m up for visitors. As long as everything stays on track I’m taking a little getaway to warm weather before I go back to work thanks to Southwest points and family that lives in a warmer climate.
I know there has been a lot of radio silence from me. I’m still in the hospital and basically feel like I live here. It’s horribly frustrating. I want to be at home. I want to feel better. Basically there is something wrong with me, but the doctors don’t know what. There is a huge, extended team working on it. Some days I just don’t want to talk to anyone. It’s not personal if I’m not responding to you. Some days I don’t want visitors. Some days I do.
It’s so many ups and downs. It’s exhausting. It’s never ending.
My doctor reminds me that I had a huge surgery and I need to be patient with myself, but that’s easier said than done.
I still appreciate all of you out there sending your positive thoughts, prayers, cards and everything else. Thank you.
I came home on Thursday February 2nd. I was so excited to get out of the hospital and the hospital bed. I got to come home to my kitties who were so happy to see me. We took a nap together the first afternoon. I no longer had someone checking my vitals every few hours. I had my own couch and bed. I had little freedoms I did the get in the hospital. My parents and aunt were there for anything and everything that I needed.
Then Monday morning I had to come in fora clinic visit and got readmitted to the hospital. I only got 3.5 days at home. I can’t even express how little I wanted to be admitted. It was a for a combination of things and it was the right decision but I didn’t like it. I am on the upswing and hopefully get to go home Friday. I had some fluid in my lungs, along with other things, so am working with a respiratory therapist.
It’s very frustrating to have ended back up back in the hospital even if it is necessary and not totally unexpected. I want to be home. I want to be feeling better. I want to be making more progress. If ever there was a time to practice patience it is certainly now. At least eating is getting a bit better. I’m actually feeling hunger again. I’m not eating normally yet but the dietician is happy with where I’m at.
So it is still baby steps and constant reminders what an invasive surgery I had, but I am happy with any progress right now and can’t wait to be home again.
Surgery was January 20th. I am sitting here in my hospital room where I’m starting to think I’ll spend the rest of my life. The surgery was successful. My doctor is brilliant. I don’t really want to go into details on what ended up being a 12 hour surgery.
I have had a few setbacks and even ended up in ICU for a few days. None of my complications were unexpected for this type of surgery. They are just annoying. I’m okay and progressing little by little. I’m now eating real food. I’m walking more. I’m working on my breathing. I’ve been told I should get to go home by the end of the week. Of course, my body will help decide that. Many of my blood counts are lower than they should be so that is keeping me here for now.
I’ve met with a physical therapist, occupational therapist, dietitian, and more doctors, residents, nurse practitioners, medical students and nurses than I can count. Once again I couldn’t be happier with my care. I’ve had wonderful nurses that really seem to care. None of the other people push. I got cleared by PT and OT fairly early thanks to my overall health and fitness and youth. I still can’t put socks on myself, but I can do a lot. Getting in and out of bed is one of the more difficult tasks, but I’m getting better at it. I’m on a super fun low fiber diet for at least a month, but this is where having a retired dietitian and good cook for a mother comes in handy.
All the cards, flowers, notes and visitors are greatly appreciated. It’s been so nice to have people stop by even if it’s for a short time because I need another nap. Having flowers is wonderful since it has basically been grey outside the entire time I’ve been in here. I do have a nice view from the 8th floor of the building I’m in.
My complaints so far are pretty small. One is the fact that every single time I call to order food, no matter the time of day, I get put on hold. Every time. Sometimes for 5- 6 minutes. And then they super annoying family across the hall from me who doesn’t understand quiet hours or keeping your children in check at a hospital. Thankfully that patient went home.
Hopefully the next time I write something I will be on my couch and not in this bed. Until then, thank you for being my friends and for caring so much.
I really didn’t know what to expect when I went public a few months ago. For the longest time I wanted everything to be private. I had a very strict no social media policy. My close friends knew and family knew but I didn’t want this out there in the world. I think I was afraid of being treated differently and being treated as sick. And I’ve never believed that I’m sick. I don’t feel sick. I don’t look sick. Saying the words “I have cancer” was really difficult. And then explaining such a rare cancer was even more difficult. There is something happening to my body and it’s not happening to me. My body and mind are fighting this with every power of its being.
I never could have expected the outpouring of love and support from family to close friends to acquaintances to people I haven’t spoken to in 10+ years. Thank you, from the bottom of my heart, for everything. It all means the world to me. Every text, tweet, email, FB message, meal, it all means something.
If you ever want to find the good in humanity this is it. I’m going through something terrible and almost everyone has rallied around me. People say you learn who your real friends are when you go through something like this and that is so true. And it turns out I have so many wonderful friends. It’s a wide net and I still can’t come up with the words to say thank you. Those words don’t seem enough.
I am one day away from this surgery and have never felt so supported.
When I was diagnosed in August my mom said this was going to be the fight of my life and I never really felt that until now. I have this huge, invasive surgery in a few days. I have read lots on it. I have listened to my doctors; all of them. I think I have now been signed off by something like 5 doctors to have this surgery (all of them think I’m healthy enough). This surgery is going to be a fight, but I firmly believe my body can handle this and that they will get everything. This does not mean I’m not terrified for this surgery. There are a lot of possible side effects, some very scary. I believe that my age and overall good health will help me. I believe in my medical team. I believe I will run again. I believe I will be cancer free. I believe in my own body.
I had the best week and weekend with friends. It was just what I needed. My friends don’t treat me different. While my huge surgery is on all of our minds it doesn’t take over. I still can’t get over how amazing my friends have been. You really learn a lot about people when going through something terrible and the people I have surrounded myself with are the best people I could imagine having with me. Planning to fill my social calendar was the best idea. It has been wonderful to see everyone. And it’s not just local friends; the calls and cards and messages from across the country and world mean the world to me. The biggest positive to come out of all of this has been reconnecting with people. I know I keep reiterating a lot of this, but “Thank you” doesn’t seem to feel like enough. Just know I’ll never forget all the people there for me.
While I greatly appreciate the boxes of goodies from everyone please do not send any more coloring books. I have more than enough from everyone who has sent them this fall and winter. I also don’t need more socks. We will probably need meals at some point, but are not doing a meal train again.