Surveillance/Survivorship is hard

Weird, right? Treatment sucks so you'd think that there would just be this wonderful easy moving forward and getting back to normal process. But it's not. 

During active treatment, you are taking things day by day or in small chunks to get to this big end goal which is, hopefully, the end of treatment and either remission or no evidence of disease. Your life has been flipped upside down and taken over by cancer but you have a goal and you are working through it and getting there. 

Then you hit the goal. You are done with treatment. Yay! Mentally though, it's still not over. You stress out with every scan and bloodwork hoping it's not going to come back. Your body takes a really long time to recover. And for me, I have no idea what to do now. Cancer has been my identity for 2 years. It has affected everything in my life. My body, my mind, my relationships, everything.

50% of my conversations with people for 2 years have been about my cancer. And I don't have an easy answer for people when they ask how I'm doing. They want to hear great, my cancer is gone, but it's not that simple. My answer involves saying that my scans are clean and my last pet scan had been clean other than the lung tumor that was completely removed by the surgery. They involve saying that my CEA levels are low and my Signatera (ctDNA test) came back negative and that I am currently in surveillance. There's no clear answer. The cancer could still come back. And that sits in my head. Cancer has taken up space in my brain. I'm working very hard to decrease the amount of space that cancer takes up in my brain but it won't ever be gone. It has moved in permanently.

So back to where do I go from here? Well, as I think and plan work and life, I keep in mind that at any time, the cancer could come back. So now I look at different jobs. I'm not looking at teaching because I can't imagine just having to leave my students if the cancer comes back. I tried to sub this year and I made it in 2 days. Maybe I'll get a couple more in before school ends but it's feeling less and less likely. So I need to look in a new direction for something that I can do from home and is flexible so that maybe I can keep doing it if the cancer does come back. I'm hoping I stop thinking like this in a few years but for now, this is where I am.

I need to come up with something new to do for work. My body is going to take a very long time to recover. My bloodwork is mostly normal other than a few things that need to get back to normal and will. I have mild fluid on my lungs and trace fluid around my heart, chronic sacral fractures (pelvis), aortic plaque, and a fatty liver. All these things are recent. None of them were around pre-treatment. My body took a pretty big hit and it's going to be ok. I'm doing everything I can to heal and recover and I will. This is my next challenge and I've got this.

Post-Treatment

I haven't written in a few weeks because honestly, I didn't know what to say. There's this weird transition after you complete treatment and it is worse after stopping it early. At least for me, anyway.

I was still struggling with my decision even though I knew it was the right one for my body. I did a lot of research and very carefully made the decision but the thing is, even though I know that it's more likely than not that the cancer will come back, if it does come back, I'll always wonder if I did enough. Would 3 more treatments have made the difference? At the same time, if it doesn't come back but I end up with significant long-term side effects on my body from the treatments, I'll wonder if I did too much. There really isn't any winning here. 

Anyway, going back to the transition, I don't know where to go from here. The cancer came back so quickly (or rather never really left) the last time, that it affects all of my decisions. It's been a VERY expensive 2 years for medical bills. We've already maxed out the family contributions to the HSA this year and insurance re-ups in September. That doesn't include the $2250 we put into the account in late December. Between doctors and dentists and cancer, between January and May we have paid more than $10,500 in medical bills and there's still 6 more months and I'll easily hit the $3200 deductible this Fall after the insurance re-ups because I still will have bloodwork and scans and doctor visits and that doesn't include anything that comes up with my family.

So, I'm really feeling the pinch to do more than just what I've been doing part-time for work during treatment these last 2 years because our savings just keeps dropping and it wasn't high to begin with. At the same time, when I'm trying to decide what to do for work, I need to find something that is more flexible. Something that allows me to still take the kids to appointments and still go to appointments myself and something that allows me to keep working even if the cancer comes back and I'm back in treatment again. I hope that doesn't happen and while I don't think it will, the very FIRST scan that I had post NED (no evidence of disease), only 6 months later, was the one that found the metastases so for a very long time, I'm going to keep worrying that there's something small still growing and we just can't see it yet. So, mentally, I need to prepare for that in all aspects of my life so that it's not so hard if it does happen. 

I'm also working myself back onto a Low Fodmap diet this week to see if I can get my stomach to feel better and to get inflammation down and to identify the things that are triggering those problems. Once I am symptom-free, I'll do the reintroductions very carefully this time to identify what foods/groups are problematic and decide what I need to limit and what I need to eliminate. Making such significant dietary changes is hard for me but I'm figuring it out.

I still have so far to go to get my body back into decent shape physically but I'm starting slowly. I've been walking once a week and trying to build little bits of exercise into my days. I'm also doing more around the house again now that I am feeling better and that helps with the physical activity as well. It's still so incredibly frustrating though. I'm so tired of being tired and weaker and now that I'm post-menopausal (silver lining from radiation) and in my 40's and have been unable to do much for well over a year and a half now, it takes a lot to get back into shape.

I'll get there but it's going to take some (a lot) of time and in the meantime, I'm still annoyed at what I can't do. I get tired after a 20 minute walk where I used to be able to walk 5-6 miles (at my former pace that was about 1.5 hours give or take 15 min) and come home and still get stuff done. Now I take a 45 minute break after swapping loads of laundry (carrying the basket up and down the stairs, folding and going up to the 2nd floor to put them away) but this is still way more than I was able to do a few months ago. 

Emotionally and depression-wise, I'm still lower than I'd like to be but it's been an intense few months and, as I said before, the transition from active treatment to recovery is hard for me. I'm still affected by the cancer but may or may not have cancer in my body. I may be done and it may never come back or it could come back way sooner than I like or anything in the middle. There's no clear answer here unless it does come back and I'd rather have no answer but it's hard to sit in a will it or won't it headspace and I probably shouldn't anyway. 

All-in-all, while I always wish it was faster (my ADHD brain wants instant results), I'm recovering well and I'm good. 

Stopping chemo

Sorry it's been so long and I didn't post since surgery. There's been a lot since then. I started back on chemo on March 12. Then I had a round on 3/26 and again on 4/9. Those were rounds 1, 2, and 3 post surgery. This past round also happened to be my 17th total chemo. These rounds were not great. 

5 days into round 2, I woke up with body aches and a headache but no other symptoms and they subsided after a day. 5 days into round 3, I woke up with full body aches, a headache, chills, and a fever. I went to the Roswell Treatment Center. They took 7 vials and 4 bottles of blood, did an EKG and a Chest X-Ray, did a nasal swab to test for 18 different respiratory viruses, and monitored my heart while I was there because my heart rate remained high. In the end, everything came back clear. Everything, body aches, fever, chills, all of it was due to inflammation from the treatment. 

I went back to the research studies I had pulled about surgery and treatment for Colorectal Cancer with a lung metastasis. I scoured back through 12 studies and focused on overall survival and disease free survival at 5 years. I also focused on prognostic factors to see where I stood overall. Then I listed the treatment problems and made a plan. 

I learned that with or without chemo, post-surgery for a lung metastasis, I have about a 30% (not an exact average of the studies, just a ballpark number) of a 5 year disease free survival. While I'm really hoping that I'm in that group, it's significantly more likely that the cancer will recur. There's nothing to show the difference between 3 rounds post-surgery and 6 rounds post-surgery and regardless, I'll never really know if it would make a difference there.

Beyond the research, looking at scans and all the information I have so far, I realized that my lung tumor was held at bay by the chemo but the chemo was not getting rid of it. I am hoping that the chemo destroyed anything small that wanted to grow into something big and anything else that could be floating around my body but I'll never know and can only hope.

I won't bother putting up my notes with Overall Survival and Disease free survival because I'd really need to include much more information because the studies vary in age and scope. I can note some of my positive factors.

Positive factors

• Clear Pet Scan
• Clear ctDNA
• Original tumor still gone
• Single Metastasis
• Normal CEA pre-chemo & surgery
• No other known spread prior or current
• Pulmonary Metastasis - no lymph node involvement
• Pulmonary Metastasis fully removed
• Relatively small lung tumor
• Suffusion during surgery

Negative factors

• Short disease-free interval
• Female
• Rectal tumor (more likely to come back than colon tumor)
• Age @ diagnosis - too young or too old are more likely to have recurrance
• Rectal tumor did involve lymph nodes

Treatment problems

• vasospasms
• fever, chills, body aches
• dehydration
• trouble swallowing pills
• nausea
• heartburn
• inflammation
• neuropathy (pins and needles weren't too bad, couldn't eat/drink cold things)
• constipation
• less exercise
• more weight gain

So, now what? Now, we look forward. Since inflammation can be a big factor in the development of tumors, especially GI tract adenocarcinomas, I work on removing foods that cause inflammation from my diet and adding some new small anti-inflammatory type things, like a little fresh ginger in my smoothies. I work on getting my body healthier so it is better able to fight the cancer and so that if it does recur, my body is as healthy as possible for surgery and/or chemo, whatever I need at that time. 

I'm not done fighting, not even close. I have no problems getting chemo in the future but right now, the toll it is taking on my body doesn't seem to be balanced out by it's possible benefits. And if I had been healthier and had more of a break between chemos to get my body back to healthy, I do think my symptoms would not be as bad as they are and I think my body would have tolerated the chemo better.

Additionally, I will go in relatively frequently for bloodwork and scans and probably still be at Roswell every other month between all the doctors I see and I will have multiple scans per year to make sure we catch it fast if the cancer recurs.

Pain Control/Narcotics

When I started coming off of my oxy, I did stretch it out longer and longer because I ALREADY knew that I needed to do this and not come off of it super fast because of my first c-section. I also knew that I missed the feeling of the pain meds more than I should so when I had a 2nd c-section, I had a very different approach. I told every single person responsible for my pain control about my experience the first time around and that I needed their support in different ways.

• I told my doctors not to prescribe more than necessary. I could always ask for more. 
• I told the nurses at the hospital that I didn't just automatically want them to give me my meds every 6 hours like clockwork. I wanted them to ask and see and sometimes come back closer to 7 hours. 
• I told my husband that when I got home, I needed him to help me watch the times and help me stretch out the pills including cutting them in half the last day or 2 to get as many days of pain relief as possible with as little actual pain medication as possible. 
• I asked the pharmacist to hold the 2nd prescription until/if I needed it. The hospital called in a second script which I found out after it was filled but I think was due to the first c-section coming home with zero pain meds and having trouble with a script that took a few hours after I left the hospital with my husband at the pharmacy and me calling my doctor and the hospital to get pain meds prescribed.
  • Hugely important side note here... a provider OR a patient can request that certain scheduled substances be partially filled. This is NOT for all medications.  https://www.ecfr.gov/current/title-21/chapter-II/part-1306/subject-group-ECFR8588b52940237ef/section-1306.13#
  • For example: Your doctor prescribes you 12 Oxycodone post-surgery. You don't think you will need that much. You can ask your pharmacist to fill as much or as little of that script as you want and then fill the rest as needed (within a certain window of time). So you can ask them to fill 4 now and then go back in a day or 2 to fill 4 more or all 8 OR just never fill any more of the script and not need to have any extra in your house that you won't use.

I've never had a drug or alcohol addiction problem but in the last 10 years, EVERY time I have needed to use narcotics, I've always been reminded about how easily I could see someone having a problem and I feel so much sympathy for people who have had addiction problems that have taken over their lives. 

I've also learned that I'm weird about pain and sometimes my pain tolerance is high and other cases it's VERY low. I fractured my elbow and ruptured a ligament doing Brazilian Jiu Jitsu and walked out of the gym laughing and making jokes while tears were streaming down my face. Then I went home and just used ice and ibuprofen and didn't realize it was more serious until it had been going on for weeks and at that point when they did the scans, there was no point in a cast and I didn't truly need a major surgery for the ligament. Now as my body was in labor... WAAAAAAAAY high pain. Bubbles up in my shoulder area from c-section surgery were miserable and worse and less controlled than the actual area of my body that was sliced open and stitched back together. You get the picture.

Fast forward to the lung biopsy. Apparently, the ONLY pain med they usually give you after the lung biopsy is generally IV tylenol. This was not ok. I could not take more than a shallow breath because the pain was so bad. I ended up getting dilaudid (which made me feel like crap at the time but ironically not nearly as bad after the c-sections or after lung surgery) and I was worried about when I got home so they prescribed me 12 low dose hydrocodone. I used 2 that afternoon/evening and the pain dropped off so by the next day I didn't even need tylenol or ibuprofen.

Moving forward to surgery. On surgery day I had been avoiding the Dilaudid because it had made me feel so badly after the biopsy. Obviously I did eventually use it because I couldn't control my pain without it and it didn't actually make me feel like crap. So when I went to leave and the doctor mentioned calling in a pain script, I told him about the extra hydrocodone I had at home and suggested he take that into account and prescribe me less medication because I can lean on that hydrocodone as needed. So when I came home I had 12 Oxy (5mg) and 10 leftover hydrocodone (5)/Acetaminophen(325). The goal was not to need the hydrocodone.

I had a really hard conversation with myself first and I still go back and forth about what meds I NEED right now to stay at a decent pain level and to keep moving. It's a little scary wondering if you still NEED the narcotics or if you just still WANT them. Even if you don't feel a high from them, you get that immediate pain relief (when it is strong enough to kick the pain) and just feel a little better. So as pissed as I was about being in so much pain at the hospital, I get that with everyone's pain being different, it's so incredibly hard for doctors to determine just the right amount of pain medication for their patients. I think open and clear communication and periodic conversations and talking to the patient about how and when to taper and when to ask for more and providing clear expectations about normal and appropriate pain levels is important.

I'm basing what I NEED on what is keeping me moving but it's removing all of my pain. Last night I used a hydrocodone. Today, all I've taken so far as 1000mg of Tylenol and it's 2 in the afternoon. Do I want the hydrocodone? Yes. Do I NEED the hydrocodone? No. My pain could be worse tonight and maybe I will need the hydrocodone to help me sleep in the middle of the night if the Tylenol just doesn't cut it. FYI - no more than 4000mg of Tylenol in a day and the Acetominophen has 325 per pill so I'm minimizing and cutting back on my Tylenol as well because using 2000-3000 tylenol a day for an extended period of time is also not great.

Pain management is very important and so is restricting opiod use BUT, finding the right balance for the patient is the most important. 

Post-Surgery

This one is REALLY long so good luck! :) 

I probably should be updating more frequently. I was very anxious prior to surgery. The PET Scan came back clean from head to mid-thigh other than the tumor that would be removed. The scan they did on my blood for my tumors ctDNA came back low (but still positive and it only takes 1 cell to take hold). And the CT scan in early January and the MRI in late December together showed the original tumor was still under control and the new tumor was growing but the chemo had slowed its growth and i didn't have any other visible tumors in my chest/abdomen/pelvis. All of these are really good things.

But the surgery... so nerve-wracking. Also, not fun. 

So, I got a call the day before that my show-up time was 5:45 am. After I laid down with the kids to put them to bed and they fell asleep, I showered, waited an hour to fully dry, then used special wipes to wipe down my body. I let the solution fully air dry (I turned on the ceiling fan in my room and held up my boobs and belly roll to speed up that area drying out so THAT was funny looking) and then I got dressed and went to sleep. We had washed sheets, blanket and pillow cases that day so they were fresh too! I fell asleep around midnight and set an alarm for 4:15 am. 

Day 0 Surgery Day (Tuesday, 2/6/24)

4:15 am, I woke up (barely), drank the juice they told me to drink 1.5 hours before arrival, and went back to sleep until 5 am. Then I got up, grabbed my bag, peed and walked out the door. We got there at 5:45 am, put my name down on a sheet and 20 min later they called me up to get a wristband and do final paperwork and find out who notifications of different surgery stages needed to be made to. 

Around 6:15/6:20, they brought me back to pre-op and I had to pee in a cup (I'm in menopause and haven't had a cycle in almost a year and a half and they still needed to make sure I wasn't pregnant), wipe down my surgical area with the cloths I had used the night before and get into a surgical gown and grippy socks. Then they brought Kyle back in.

They started setting me up at this point and doctors, started popping in to say hi. They used my port for fluids but they were taking forever to drip in that they took some by syringe and pushed them in a little faster. The clinical trial/suffusion doctor was first to arrive and we talked for a bit and then he had to sign my left shoulder with a marker though I told him it wasn't a cast. I don't remember the order of everyone else, but the surgeon came by to check in as did the anesthesiologists, 2 research peeps who would be in the surgical room, and the surgical nurse. I asked at least 4 doctors and a nurse if someone could just do 1 selfie of me out cold in the operating room with everyone else behind me (ok, 2 pics, 1 serious and 1 goofie) but I got nothing! 🤣

The anesthesiologists also gave me some other meds to help prep for surgery. When the last of the fluids had finally dripped in and everyone had said hi (also, 1 pee break in the middle because you can't give me a bag of fluids without me needing a pee break every 20-30 min), I was rolled out of there and Kyle went back to the waiting area. I believe this was around 8:10. I wasn't in the operating room long before they knocked me out but I remember it having a lot of things in there. 

Kyle wouldn't send the status texts from my point of view. Some examples could have included...

• "in surgery now and that scalpel looks sharp so I may need to put my phone down and check back in later" and
• "what a weird feeling to have someone deflate your lung and fill part of it with a toxic chemical and just chill out like that." or
• "suffusion is done...should I worry about the smile on the doctor's face while he takes a good-sized chunk of my lung out. Is he enjoying his job TOO much?") 

Kyle refused. What a jerk! 🤣 JK He's no jerk, he's one of the most amazing men I've ever had the privilege of knowing. 

Anyway, timestamps of the different stages of surgery were:

• In Preop Area - 7:30 am
• Procedure in Progress - 9:00
• Nearing Completion - 12:52
• In Recovery - 1:02
• Complete - 2:22

They had a nice little board that also showed the stages but I had set Kyle up to have text notifications as well. Somewhere around 11:30 am, the Suffusion doctor came out to tell Kyle that his part was done and they had moved on to the resection. I think Kyle said I was in a room and he joined me around 3/3:30 but it could also have been 2:30. I don't remember. I was barely awake for any length of time for the rest of the day and it I was woken up for meds or anything else, I was actively fighting falling back asleep. And my pain never dropped below a 7.

As far as the surgery goes, the clinical trial surgeon blocked off the blood vessels going in and out of the lower lobe of my left lung. I'm not sure when my lung was deflated but I'm assuming it was prior to this step. Then, the blood was drained and the chemo meds were manually pumped into the blood vessels. At this point, they let the medication just sit in that part of my lung while doing other tests and other things they need to do for the research study. When it's sat for half an hour, they undo whatever they are using to clamp off those blood vessels and let the meds just drain back into my system and get processed out normally. Then the surgeon doing the resection removed a wedge from my lung and they closed me up with a chest tube in. The whole procedure was done VATS so I just have 3 pretty small incisions. 

Day 1 Post-surgery (Wednesday, 2/7/24)

Pain control was a MUCH bigger problem the day after the surgery. Since doctors do rounds at 6:30 am, my nurse was in my room at 5:45 moving me to the chair in the room. Unfortunately, the bulk of my pain was actually in my shoulder and side from how my body was positioned during surgery and while I could rest my arm in the bed I couldn't get a supported position in the chair so as the day went on, my pain just got worse and worse. I may have dropped down to a 6 once really late in the day after both dilaudid and oxy not too far apart but my pain was out of the control most of the day. 

In the morning when the PT came in to walk with me, I couldn't even move or talk and I was crying because the pain was so bad. I had resisted dilaudid up to this point so some of that was on me but I had been telling them since the night before that the Oxy wasn't even touching the pain. This amazing PT said, well, we definitely aren't walking now and she immediately went and got an NP who brought Dilaudid and I dropped back down to an 8 which I was tolerating - ish. 

So then, doctors went through and my arm hurt more and more as they day went on because it wasn't getting supported but I was doing great otherwise and wasn't on oxygen and they removed my catheter and the chest tube. I was doing really good and they were thinking that would help significantly with the pain and it did but no more than dropping me from an 8 to a 7. They were talking about me getting out of there that day and my pain was still all over the place but not below a 7 at any time yet. To get me out of there, I had to be off of IV pain meds (dilaudid) so they cut off that prescription and had me only on oxy and tylenol and neigher came close to dropping the pain at all.

I was sleeping a lot and stayed in the chair and avoided moving because it hurt so much. I was avoiding the spirometer and coughing because the pain shot up when I moved, coughed or tried to breath deep. I had another moment that night where the pain hit a 9 again and I had to write a note to the nurse on my phone saying that I can't talk because the pain is so bad and had to show it to her when she came in because when I tried to talk or move when the pain was bad it hurt worse and then I started hyperventilating and couldn't breathe because I was already short of breath. The NP immediately got the dilaudid re-ordered and gave me some and I started doing better. Then I got back into the bed and between the meds change and what they were alternating with and the chest tube out, and sleep, I started doing better.

Day 2 Post surgery (Thursday, 2/8/24)

I woke up this day at around a 6 on the pain scale with any small movement (including breathing) so this was a huge improvement. So early in the morning they told me I could go pretty much whenever I wanted to that day so I had Kyle meet me at the hospital at 10:30. Took a bit to go over everything and to get out of there but I was happy to be going home. They gave us instructions and called in scripts and the first concern I had was that to get down to a 6, I had been taking 2 oxy at a time and had still been using dilaudid and they had prescribed me 1 oxy every 6 hours (12 pills total - but I had let them know that I had about 10 leftover hydrocodone from my lung biopsy) with 1000mg Tylenol 2x per day. NOT COOL.

So the rest of this day I mostly stayed upstairs in my bed sleeping or just resting with limited movement. Most movement was shortly after pain meds and I did push myself to do a little walking back and forth and use my spirometer every time I got up to pee and if you know me at all, that's at a minimum hourly, if every 20-30 minutes when I'm awake.

Day 3 Post surgery (Friday, 2/9/24)

Started a little rough but around noon, the pain started dropping and the tiredness from the anesthesia started wearing off so I put on my apple watch and did a lot of movement and spirometer and coughing up as much crap as I could. Can I tell you how weird it is to be happy about coughing up blood? Every time though, I was proud of myself because it hurt to cough it up but my body wanted that excess blood from the surgery getting out of my body. It was mostly darker at this point anyway. 

I stayed upstairs this day and I did rest a little in the afternoon but for the most part, I tried to use my spirometer frequently and to walk around to keep moving. I ended the day with 1310 steps and my breathing was definitely improving. I was also getting better at supporting my left arm when it wasn't used and holding it against a pillow when I coughed so it didn't hurt as bad. 

I felt gross since I hadn't showered so Kyle helped me shower before bed and it was amazing to feel clean and to just wash off all the crap from the surgery and hospital. I also was able to take off the dressing from the chest tube area and the dressing from where they inserted the tube into my groin area to go all the way up to my heart to pump in the chemo medication. 

Day 4 Post surgery (Saturday, 2/10/24)

Still used the Oxy every 6 hours and the Tylenol 2x/day to stay on top of the pain and was still sore by the end of the day BUT I woke up around 9 and got up and went dowstairs and spent the day downstairs. My pain well-controlled (by well-controlled, I mean it's generally pretty low at around a 3 at rest, between a 3 and a 5 when I'm moving around, and around a 7 - 8 when actively coughing, which I do a LOT. This allows me to do a lot of moving around and really push the coughs and stuff out of my lungs, and use the spirometer to help me breathe deeper and deeper. I actually overdid it a bit because my sister was helping clean my kitchen and I wanted to chat and needed to move so I just did some slow walking back and forth while we were talking. I had set my watch to track it but didn't think anything of it and when I looked at how long I had just been walking back and forth, it was over 25 minutes. I ended the day with 1923 steps.

Also, as much as you all wanted to know this, with the pain down and moving more and being more comfortable, I had the first 2 bowel movements that I've had since before the surgery.

I'm still very forgetful so Kyle's been giving me my meds all along and keeping track of them for me and has been giving me the shots to avoid blood clots. No naps today so I was definitely wiped so I headed upstairs by 8 pm and was probably asleep by 9:30 pm.

Day 5 Post surgery (Sunday, 2/11/24)

I had pushed myself too much on Saturday so I stayed in bed until around noon before going downstairs but then I headed downstairs for the day. This time I went up and down the stairs more than once and I really should not have. I was feeling it. However, I had a good day, had another bowel movement (sorry but it's actually quite relevant to my recovery), used the spirometer a lot, moved around a lot (1764 steps). I had slowly started stretching out my meds earlier on Saturday (every 8 hours-ish) so I only took the Oxy 2x today.

Day 6 Post surgery (Monday, 2/11/24)

So, I really need to make better choices. I did 5 flights of stairs today and 2,361 steps. But I also was able to take my kids to school (my sister drove) and walk my younger son up to the playground (~30 feet from the door he enters) and we were able to let him swing for 5 minutes before the door opened and he had to go in. I stayed home at pickup but it was just so nice to be out and in the fresh air for a few. Otherwise a similar day to the previous days. Always lots of coughing that hurts. Always breathing just a little better than the last day. Always doing too much and regretting it. But getting a lot in. 

So one difference though is I had big decisions to make today regarding pain medication. I was sent home with 12 oxy and I had 2 on the day I left (Thursday- stuck with every 6 hours), 4 on Friday, 3 on Saturday, 2 on Sunday and 1 Monday morning. I also had 10 leftover hydrocodone from the pain from the lung biopsy. I'm going to save that for a separate (AND SHORTER) post because I think it's an exceptionally important discussion to have.