Sunday, April 14, 2013

Time to Step Up My Game! 4/13/13

I've attempted working out a few times since I have begun chemo and it can be quite frustrating! For instance, one day while I was still going through chemo I decided to start slowing running again, I decided a 2 mile run would be a perfect start. I grabbed my brothers dog and took off, but I don't even think I made it a quarter mile before I had to walk. I walk/jogged the 2 miles and felt like I was going to die! I made it home and just began crying, I didn't realize I was so weak, not only my legs but my lungs. My mom reassured me by saying it will only take some time. Since that attempt I tried a few more runs, went to the gym a few times, Ryan (my boyfriend) introduced me to mountain biking, but as I got closer to the surgery date I began to get discouraged. I made the excuse that the recovery time was going to take weeks and all the working out would be a waste since I would lose all the muscle or endurance I had gained.

One thing I've always wanted to do was complete a half marathon, so I'm going to start training! Ryan is a big runner and has decided to start running again, so I will use his motivation as mine! :) He took me to the local running store and we picked out some new shoes, so I have no excuses, except I still need a couple more weeks of healing time ;) I was fitted for shoes and the ones I ended with were New Balance, breast cancer awareness appropriate! Although it can be very frustrating I have realized I will be starting from the very bottom, but with time I will gain all my endurance back and will complete a half marathon! :D

As we were checking out Ryan asked if I needed some Nip Guard...he always keeps me laughing! 
In case I didn't cover this topic, I no longer have nipples 8-)

Check out the new kicks!

A Brighter Day 4/12/13

After having a rough day yesterday my mom, cousin Tina, and girlfriend Kacie decided to get together for breakfast. I'm so thankful for the amount of support I have received through this journey. Everyday I am more and more amazed by people. People I've never met pray for me, I get several positive posts on the Team Sam Facebook page, the support I receive continues with no boundaries. Today at breakfast our waiter walked over let us know that an anonymous person paid for our tab and he handed me a napkin with a small note. I wasn't able to hold back the tears. I can't begin to explain the way it made me feel, so thank you whoever your are. :)

"Praying for you Sam!"

I was able to fill the rest of my day with great company. Kacie and Brooklyn helped me pick out a few new shirts for my new flat chest to make me feel more confident about my new appearance. I was introduced to another breast cancer survivor who wants to help by being a mentor, I think it's the beginning to a very special friendship. It's days like today that get me through this incredible journey. I will never be able to thank everyone for the support that I continue to receive. I promise that when opportunities arise I will give back. 

Postoperative Appointment, the Ups & Downs to Cancer 4/11/13

I've been fortunate enough to have been introduced to an organization in town called "Bridging the Gap", they have given countless forms of support. I went down to Stanford and was provided a pilot and plane to ride down with rather than driving the 8 hours. My father and I rode down with the pilot, Mike and his wife. It was a pretty neat opportunity that I would have never ever expected to experience! People's kindness is so amazing! It was cool to put on a pair of "David Clark's" (the headsets used to communicate in the aircraft) again, it brought me back to my Navy days. I had a ton of memories pop up and I was able to listen to Mike communicate with ground tower. The ride was just under an hour, which saved my dad and I a minimum 8 hour drive and about $100 in gas, not to mention a VERY long day considering I'm usually stuck at Stanford a few hours. It was a beautiful flight and once we got down to the bay we were able to see the Golden Gate from above, which is something I did once while I was in the Navy.

Before I go into detail about my postoperative appointment at Stanford, let me explain the one I had here in town on Monday...My mom, dad, and I went into a check-up appt with my oncologist here. He didn't have the final pathology report from my surgery, but had the preliminary. He was extremely happy to express how well my body had taken to the chemo and how they couldn't have asked for better results from my treatment plan. Obviously my family and I were extremely happy to hear that, I was trying not to get my hopes up and wanted to get the final report before spreading the great news. I expected to go down to Stanford and hear that I was close to being "cancer free", but that wasn't the case at all. 

April 11, 2012-9 days after my mastectomy:

After we landed in San Carlos, Mike and his wife Beth drove my dad and I to my appointment where we checked-in and proceeded to the usual wait. The docs are typically at least an hour behind schedule. Finally the resident for my surgeon came in and asked if we had met with my oncologist yet and received the pathology report, because they weren't technically supposed to see me until after my oncologist...I tried to be sneaky by saying we had met with my other oncologist and got the results (hoping this would get my surgeon in sooner). The resident replied, "Oh, so you know about the HER2/neu.?." I'm pretty sure the expression on my face answered that question, I had no idea what she was talking about. Panic began to spread throughout my body, I was really really really hoping and expecting ONLY great news. 

If I could wish for one thing it would be to hear from my doctor, "You're cancer free!". I have a fear and I think the reality of it is, is that I will never hear that. I was hoping this appointment was heading in that direction, but of course it wasn't. When I was first diagnosed we had a bone scare and my doc prepared me by letting me know if the cancer was in fact in my bones I would have 5-10 years to live. We never got a final answer and we never will on whether or not that one small spot on my right pelvic bone was cancer. We did repeat the scan half way through chemo and the spot had disappeared, and the second bone scan was also clear...but I was also informed that there can be cells so microscopic that they are too small to be seen on the scan, making the scan not 100%. The toughest lesson I've learned through this process is that not everything is black and white and some questions will never be answered.

Back to my post-op appointment story...
Eventually my surgeon came in. I immediately jumped into my cheery, happy, fun attitude, as if I wasn't worried about the news I was about to hear. He asked how things had been going, he examined, we joked around, and I begged for him to remove my nasty drains. He assured me that the one drain that was only draining 5-10ml a day was ready, but the one that was still draining 30ml was a little more risky. I was so uncomfortable that the resident numbed me, cut the stitches off, and pulled the tubes right out of me! Then came the serious talk. Because I am not a doctor and I definitely don't understand all the terms and vocabulary that comes along with cancer I can only try my best to explain what the doc told me. He went into great detail about the pathology report. About how originally I tested HER2/neu negative (You will have to research HER2, I honestly can't explain it.) but the report came back with some of my tissue being positive. This results in me being both positive and negative for this protein HER2/neu. He seemed very concerned about my case, although they've seen it before it's very rare and they're not completely sure on what the next treatment plan would entail. I asked a million questions including whether it was possible to have incorrect test results, but he ensured me it was correct. He explained that about 90% of the cancer was gone. We discussed the possibility of that the remaining 10% could be HER2 and the chemo that was administered to me doesn't treat HER2, and that they normally treat positive patients with the drug herceptin for one year every three weeks. The good thing about herceptin is that it doesn't have the terrible side effects that chemo does, and I should be able to maintain a normal lifestyle. The shitty thing is that it's another year of my life!!!!!! I know that seems silly to complain about a year when it involves my life or death, but I went into this appointment thinking I was on track to being cancer free very soon. I asked him why my surgery had taken so long and he said I was more of a tough case and was a case where he really had to use all 30 years of experience and figure out how many lymph nodes needed to be removed. Overall he questioned his actions, but thinks he made the right decision. He explained they did a lot of waiting on the pathology reports during surgery, and how the plastic surgery team came in and they had to push them back at least an hour. I think I was under for about 10 hours, when I should have been done in 6. I also asked how many nodes were taken and he wasn't able to give me an answer because they were unable to get an accurate count. My body had such a great reaction to chemo that all my nodes had shrunk and some had shrunk into my tissue making it impossible to count how many were really taken.

Another lesson I've learned about being a patient is you've got to act strong around your docs if you want to hear the reality of things. I love my surgeon because I feel like he gives it to me straight, because he knows I can handle it. Since this whole thing has started I've always wanted to know the worst case scenario, so I can prepare for the worst and hope for the best. That way whenever I received bad news I would be ready for it.  

A few minutes later my female oncologist came in with her two residents. She's quite the talker. She began talking about how great things were looking and how well the chemo worked, how great the surgery went....blah, blah, blah, I already knew the good stuff, I wanted to know more about the recent discovery. She explained it in the most positive way she could about the HER2, but I was still fighting back my tears. After a long discussion she explained that they were going to send my rare case to this expert, Mike Press, down at USC and he should help figure what the next step is going to be. So hopefully in a couple weeks we will have some new results and treatment plan. 

I guess the question I keep asking myself is if it's not a huge deal that I am positive HER2, then why don't they just treat me like a normal patient with one year of herceptin? I'm definitely not complaining that an expert will be looking at my case, but I just wonder if it's more serious then the doctors want to tell me or maybe there is more in the path report that needs further research that I don't know about. 

I also asked again about my questionable pelvic bone. The question that we have been asking for months is whether we should radiate the small questionable spot, which of course depending on the doctor I got different answers, but overall they still aren't sure.

Let's hope for some good news in the near future. A huge thanks to Mike and Beth Paul for the flight down to Stanford!

Tuesday, April 9, 2013

Recovery from Hell

When I began gaining consciousness I remember someone saying, "her binder is too tight, she needs a different one...". When I woke I was in a huge recovery room, I think there may have been one other patient there. I overheard someone mention the time being 10, I immediately thought they must be saying 10 minutes. I asked the nurse what time it was and she said, "10 after 10"....10pm!?!? I was supposed to be done between 3:30-5:30pm. I immediately began to panic thinking something had to have gone wrong, or they found something unexpected. Not to mention Ryan and Jaycie had a four hour drive ahead of them and I didn't want them driving through the night. I asked to see my family but they said I had to wait an hour so they could keep an eye on me. I was trying not to be frustrated but I wanted to see my family and I wanted to know why surgery took so long. I was so dehydrated I couldn't talk, my tongue would get stuck to the roof of my mouth and my lips were glued together. The only thing they gave me was a sponge stick to dip into water and suck on.

10 hours later and I'm all Done!

My biggest concern about this surgery was what I was going to look like after. I've seen a lot of mastectomy scars and they are brutal. I asked to see mine and to my relief the scars aren't nearly as bad as I expected. My plastic surgeon was able to fill my expanders 150 cc's. In a couple weeks I will go in to get them filled more, and hopefully every week up until radiation starts.

They finally wheeled me out of the room and I saw the back of my dad's head and yelled, "Daddy!" and began crying. My dad, mom, stepdad, boyfriend Ryan, girlfriend Jaycie, and aunt were all there patiently waiting. All I wanted was to be embraced by all of them, but the nurses wouldn't let me, they wanted to get me situated in my room first. There was a phone in my room and I began calling my parents over and over, but apparently the phone did call long distance. Because I was in a room with another patient, I was only allowed two visitors in at a time. Everyone went home for the night, except my dad, he sat in an uncomfortable chair through the night. Every time I woke up he was there sitting wide awake watching over me.

Catching some ZZZzzz'ss

The next day they transferred me to my own room. Everything is kind of a haze for me, but what I remember it was terrible. I was on too many pain meds and felt awful. They told me they needed to take out my catheter, I had no idea I even had one in, except for I knew my legs kept getting tangled in some awkward tube.  They pulled it out and said I had six hours to pee on my own. I didn't think it would be an issue since they had been pumping liquids through my IV and I had been chowing down on water.

Walking with my monitor

The nurses gave me three goals that day: pee, go on two walks, and manage my pain levels. I was so drugged up every time the nurses came in to talk to me I could barely keep my eyes open. When I thought it was time to pee, my bed was raised and I was assisted in standing. I was dealing with nausea and was informed that it was from the anesthesia and would only last 24 hours. I got to the toilet and expected pee to just flow out of my body like any other day, but it didn't. In fact all I could do is sit and wait, and wait some more, and in between waiting I would puke. It was an ongoing process. Every time I got up to the bathroom to pee I would puke, one instance I got to the bathroom but collapsed on the floor and just got sick again, my mom was standing there feeling helpless. Keep in mind I just had my chest cut up so my whole upper body was incredibly tender and every heave hurt. I couldn't walk on my own I used my IV monitor as a walker. The nurses kept pushing the issue that I needed to walk that way they could discharge me, so I tried but it ended with violent vomiting. I didn't eat for three days.

Lots of pain meds...

Trying some massage therapy

The lady in charge of the START research project came in to monitor my process. Every side effect she asked if I had, I had. My dad became furious and told her to take me off the medicine because I was so ill. After much discussion she finally agreed to pull me from the study. My doctor came in and I asked her to give me the lowest dose of pain meds. I was only supposed to stay in the hospital for two nights, but my doctor decided it was best if I stay another night. After I stopped the research pain meds and started taking weaker meds I was able to eat and hold it down. I started to hold my own cups, food, and pee on my own! The last day I was there we even went for a walk. (Not a long walk, but it was a start!) I was finally release on that Friday, April 5th. I stayed at my Aunt's that night and headed back home on Saturday.

I ate that whole sandwich all by myself!

Hallway where I first attempted to walk

Waiting on valet to bring the car!

Leaving Stanford Hospital!!!

Drain #1

Drain #2


Today is one week after surgery and I'm doing a million times better! I only have to take half of the pain med dose that was subscribed. My mom still comes over everyday to help shower, but I think I could do it on my own now. I can maneuver in and out of bed. I'm not in a ton of pain, the only thing I really have to complain about are the drains. My left side is so uncomfortable all day everyday. I am hoping to get them taken out on Thursday when I go back down to Stanford. I have to thank all my friends and family for the support. My Aunt Mary has been amazing and has been to almost every appointment. She's my voice and doesn't take any shit from any doctor. She's also saved me hundreds by letting me stay at her house when I have appointments down at Stanford. I have the most amazing father anyone could ask for. He took three weeks off work to be with me during everything. He stayed by my side night and day in the hospital, he cooks me breakfast lunch and dinner, and even brings me breakfast in bed, and wakes up every couple hours every night to give me medicine.

Ryan and I eating ice cream and working on a puzzle in the comfort of my own bed!

Bye Bye Boobies 4/2/13

We checked into the third floor of the Stanford Cancer Center at 7:30am. My emotions were completely held together, unlike the days prior. I signed all the paperwork, including the one giving permission to my dad to make my medical decisions in case I became incapable. I was called back and asked to undress from the waste up to prepare for my wire placement.

Keeping busy until being called back.

The wire placement procedure is done under an ultrasound machine. They numb your axilla then stick a long big hollow needle into the infected lymph node. Once they reach the node they literally stick a thin wire in through the hollow needle and hook the end into the node to keep it there. They tape the remaining to your chest, take a quick mammogram and send you on your way to wait for surgery.

                                                                                 Ryan and Jaycie 

My main man!

After the wire placement I was wheeled (in a wheelchair...I wasn't allowed to walk myself) back to the holding room where they prepped me for surgery. My dad, Ryan, and Jaycie were allowed to stay with me at this point. I stripped down to nothing, they gave a gown, a hair net (even though I have no hair), and some sweet purple socks with grips on both sides. Nurses, doctors, residents, and more nurses began flooding the room. They hooked up IV's and started me on this trial medication.

Quick side note, I volunteered to be part of a research study called START, Stanford Accelerated Recovery Trial. The pill they give you, Gabapentin, is supposed to help with surgical pain and reduce the use of other pain meds. The study is to see if it helps patients recover faster. I decided that not only could it benefit me, but it would benefit future patients. It was a way for me to feel like I was "giving back". The only reason I have made it this far, fighting and surviving, breast cancer is because other patients have at one time or another been a "guinea pig", and now it was my turn.

They also asked if I wanted a "block",  I had never heard of one before. It is supposed to relieve pain in my nerves in my back or something....all I knew was it was supposed to help with pain and it would last about 48 hours, so I agreed. Everyone stepped out of the room and the resident anesthetist injected four of the most painful injections. They didn't even feel like needles they felt like someone was taking a pen and jabbing it into my back. My dad later mentioned to me that those spots were welted and bruised.

I was anxious to speak with all my doctors because they always had a way to reassure me. My team of doctors have always been honest and never gave me any B.S., which I always respected because it helped me prepare for the worst. After everyone came in and prepped me I said farewell to my dad, Ryan, Jaycie, and most importantly my boobies and off I went.

I was rolled into a huge surgical room with millions of dollars worth of machinery. The women that were in there were draped in their own blue gowns, head nets, and clear plastic pieces over their faces. They moved me from the hospital bed to a flat table. From there they adjusted my head comfortably into a headrest, covered me with warm blankets, stretched both arms out to the side and strapped them in. I was with the anesthesiologist and she placed an oxygen mask on my face and I asked her if this was when I fell asleep, she said "no" (She was an older women, had been doing anesthesia since the year I was born and she was from Ireland and had a thick Irish accent.), then I felt a rubbing/burning sensation on my left wrist. In her thick Irish accent she apologized for the sting, and that's the last time I saw her...

Nurse was putting an IV in

Sweet new wardrobe

Jaycie putting on my really cool new grip socks

Poppa Bear

Monday, April 8, 2013

Lymphoscintigraphy 4/1/13

My dad, boyfriend, girlfriend, and I drove down to Stanford the day before my surgery for a pre-op appointment. The scan/procedure was called a lymphoscintigraphy. My appointment was at 2PM, this is when they injected a radioactive substance into my breast. There were four injections, one on the top, bottom, right, and left of my areola. Luckily they used small needles but they felt like terrible painful bee stings! After the injections I had to wait two hours for the dye/tracer to travel. After the two hours they did several scans of my right armpit to check the lymph nodes.
The point of this scan is to find the sentinel nodes and see if they contain cancer so they could be removed during surgery. It helps the surgeon during surgery so they know which nodes need to be tested, the tracer is also a blue dye the surgeon is able to see with the naked eye.
After several scans the techs concluded the tracer/dye did not move into my axilla. We tried arm exercises but unfortunately it didn't help. I was pretty frustrated because we spend hours on this scan and I wanted the doctors to utilize it during surgery. I later found out that sometimes it takes several hours for the tracer to move and it was possible to still assist the surgeon.

Finally my last scan before surgery!

Met with Kacie and Ashley for breakfast before leaving Chico.

Grabbing a beer to calm the nerves ;)