Life's Journey

I'm healing. Each day is a little better than the one before, this is good. My surgery wounds are healing correctly I'm on the path of recovery. And I can honestly still say that today I feel better than I did before the surgery and for that I am grateful. I'm still getting used to the new body and body image that I have now. It's definitely a reminder every time I look in the mirror. I have this lovely "scarlet letter" with me where ever I go, I just hope I have (or can find) the right clothes to help cover up the bags existence. I'm sure I will get that down but for right now, I feel like everyone knows it's there and is staring at my belly (although they clearly are not) I know that no one is staring, it just feels that way.

We met up with some friends for lunch together a few days ago. It was nice to get out of the house and be a person for a few hours. I had a delicious cobb salad. It's been a long time since I've had a salad (they were off limits when I was on chemo because of bacteria all foods had to be cooked) so I jumped at the opportunity -yummy!!!! But, I didn't think through the consequences of that one. While roughage is good for your digestive system, it also causes gas. Sigh But I dealt with that and was still glad I had the salad!

I'm still getting used to what I should/shouldn't eat. My doctor game me no restrictions but I'm quickly finding that some foods cause gas, some digest quickly, while others are slow movers. I haven't gotten my full appetite back yet I instead find that I am eating 4 or 5 small meals or bites throughout the day. So far this seems to be working.

I have also already faced one of the nightmare situations that comes with a colostomy bag. I've been setting my alarm between 2-3am so I can take a pain pill and check the bag. I have learned that my movements happen the most at night while I'm sleeping. Well, this particular morning the bag was pretty empty when I took my middle of the night pill so I went back to sleep. I also have to add that I've been sleeping a little propped up so my torso is at an angle but I am on my back. So woke up around 7 that morning with Roy. Instinctively the first thing I do is feel the bag to see how full it is - this was FULL like holy cow full! I pulled back to covers and lifted my shirt to find there was a total bag blow out! It looks like my pipes finally unclogged but "why like this" I asked myself. I was stuck on my back if I moved this mess was going to get a lot worse. This is one of those perfect example situations where I can honestly say I am married to the best man in the world! He went into problem solving mode and just started helping me. We were able to get things cleaned up and I muddled through replacing all the mechanics that go along with having the bag. Thankfully my home health nurse was scheduled to come that afternoon. I called her and explained my situation and she came early to check on my work. Well, I didn’t do a great job so we had to replace everything again. As we took everything off… guess what happened? Yup, things started moving again. Murphy's Law. And there was nothing I could do about it except laugh at this point. So we did. We laughed and laughed as we cleaned it up - not once but twice before we could get everything all set up again. Phew! What a hot mess! LOL I'm just so glad this was all in the privacy of my own home and that Roy handled it all like a champ. I guess you could say this was our latest adventure. LOL

It's been just under 2 weeks since my surgery. I've been out and about a few times in small spurts. I find I spend most of my time relaxing in big red and watching TV. The Hallmark Channel sucked me into some of their super cheesy christmas movies. And I'm glad we have a good selection of movie channels. But I do fall asleep quite often. Sometimes I feel it coming, sometimes I just crash out. I know the rest is good for me, but sometimes I gut ants in my pants and want to get out and do stuff. But the bursts of energy don't last too long right now so I'm just listening to my body and going with it. Like I said, I'm still learning how to adjust to all this new stuff.

Hope everyone had a wonderful holiday.

Sending hugs & smiles,

Sarah

Today is Christmas. I am home with my amazing husband. We are spending the day comfortably, relaxing, and watching a South Park marathon on the comedy channel. It's a quiet Christmas and I am so glad to be home with Roy and Ben. My mom and Dean will be coming over for the afternoon and evening. They are bringing all the stuff to make a yummy Christmas dinner.

I'm feeling a little better every day. I'm recovering much better and faster than I ever expected for this type of surgery. I think because I felt so bad before the surgery this recovery is almost easy it feels so good to have relief from all the pain, bloating, nausea I was experiencing. Once I am able to wean off the pain meds I think I will feel more like "myself" than I have in a long time.

I have a poop update: there has been poopage! I had some movement while I was in the hospital and more today. I can't tell you how strange this whole thing is… all I think about is poop right now. Have I had any? Am I going right now? Is there something in the bag? Do I need to do something? Am I sitting in the wrong position? Is stuff squishing? The thoughts are running through my head all the time right now. I assume once I get used to having this thing I will get used to it and these thoughts will go away. It's just going to take time to get used to everything.

The home health care nurse came to see me yesterday. She will come twice a week and help me with everything for at least the next 3 weeks and then until I am comfortable with everything and no longer need her help. It's so strange to say that I have home nursing care at 38 years old, but I do. And I'm glad to have her, it's mostly a piece of mind thing. There are a lot of steps in changing out the whole apparatus and it's good to have someone looking over my shoulder so I know I'm not screwing it up.

I'm still on a lot of pain meds. I am trying to wean off them, but for now they are a lifesaver. I hurt through the plethora of pain pills so I can't imagine the pain without them at this point. But eventually I will be able to wean off them and hopefully go pain free for a while. Definitely less pain than before the surgery.

Well, my family has just arrived. I will sign off for now. I wish each and every one of you a very Merry Christmas with friends, family, and loved ones. Embrace these moments with the ones you love. Smile, laugh and enjoy.

Sending hugs and smiles!
Sarah

Surgery went as good as could be expected considering my circumstances. The doctors knew this was going to be a tough one for a lot of reasons. All the surgeries I've had done to my abdomen have caused a lot of scar tissue and adhesions to form - this is not what a surgeon wants to deal with. Also the fact that the cancer is just running amuck in my pelvis area is another unknown that surgeons are not fans of - these and some other factors meant that I had a lot of risks just going into surgery. Dr. Kim is a rockstar and was able to get in and perform the entire surgery laproscopically! This is really helping with my post surgery pain and my healing time. I have 3 - 1 inch incisions rather than one big 10 inch one.

They ended up performing what's called a Loop Colostomy. This means he didn't have to cut out pieces of the bowels, my intestines are all in tact (for the most part). I'll try to explain this but it's a little difficult and kinda gross so if you don't want the deets on how this stuff works than skip this entire paragraph. They cut a hole on the left side of my abdomen area - it's just to the left and slightly above the belly button. This is the hole for the stoma. The stoma is the nubbin of intestines that now sit on the outside of my body and create a new "exit" point for stool. Once they had the hole in place they went in and pulled the intestines up and exposed a part of them creating the stoma. So the intestines from my stomach to this new stoma are untouched and should work normally. Food will process through here and come out the stoma into my colostomy bag. There is still intestines/bowels intact that continue from the stoma down to the rectum. So I really have two exit points now. But, everything will be coming out the stoma they tell me because this is a faster exit point. He said I may have some "stuff" pass through the "old fashioned" way but that wouldn't happen often. An Ostomy Nurse came yesterday and spent some time with me teaching me how to take care of the stoma and bag maintenance. I was pleased to find that this wasn't as daunting as I made it out to be in my head. I mean, it's not awesome, but it's better than expected. When she first took off the bag and I saw the stoma I had to catch my breath. It's pretty gruesome and even though I knew, from doing some research, what it would look like it's a shocker to see this thing on your belly. So I asked for a minute to just absorb that and let it become real for me before we went on. Once I got past that shock I was good to go. The colostomy bag is held on by a "wafer" which is attached to my skin with this special wax stuff. It's really pretty cool when you think about it all and how they came up with all this stuff. Anyway, the bag then kinda snaps into place on the wafer and that's it, all set. The wafer needs to be changed out twice a week and the bag is on an as needed basis.

I'm not sure how much sense any of that made or that I fully explained it all but that was the "in a nutshell" version of my colostomy. I have not passed any stool yet but I have had quite a bit of gas. (ok, frankly it's really weird to sit here and type all about my poopin and gas status especially since I know you all will be out there reading this but I'm doing it because it's what this surgery was all about and I always said this is the place I would be totally open and honest, so here I am… writing about my poop bag - sigh) It's funny because the gas is literally startling - lol - I don't "feel" it coming like you normally would and I have absolutely no control over it (there's no more squeezing the gas back to avoid farting) - the farts just happen. Whoa, was that gas? Is a common reaction at this point. And they come out of the stoma on my belly with a vengeance! It's a super weird feeling but it's also super surprising and has made me jump a couple of times. They are certainly not quiet either. Not sure how I'll deal with this once I'm out of the hospital but I'll figure something out. Maybe when it's under clothes and stuff it won't be so "loud" (maybe that's wishful thinking). They are mailing me 30 days of supplies to the house and the nurse told me the bags I will have at home will have a little charcoal filter at the top where the gas air can escape but it won't smell. So that's kinda nice, my farts don't stink it up anymore - lol - silver lining? LMAO hee hee sometimes I crack myself up (BTW, I am on a lot of pain meds right now so if my writing is all over the place that's why).

I'm feeling WAY better than I expected I would. I think that because this was laparoscopic surgery and because they didn't actually cut out parts of the bowels the pain is much easier to handle and the healing is going to go much faster. I honestly feel better right now than I did 3 days ago! So, for me this means the surgery was successful! As I mentioned I am on a lot of pain meds right now just to manage it. Last night I got a few hours of just good deep sleep which was nice except it meant I didn't "push the button" for my pain meds for those few hours. Holy cow that made a huge difference, I definitely felt the pain when I woke up. My nurse was awesome enough and gave me an extra boost of pain meds and I'm starting to get back on track. I got up and pee'd (which btw is happening normally no issues) and decided to walk around the nurses station a few times to stretch it out. I know from all my surgeries how super important that is! Always always always get up and start walking as soon as possible and don't stop. I try to take my little walks at least 4-5 times a day. This makes a HUGE difference in the recovery. So, while I certainly don't feel like a million bucks I am feeling way better than anticipated. The morphine button is still my best friend but I am trying to wean myself off.

One of my doctors just came in to check up on me. He talked me through more of the surgery process, issues, and concerns. One of the issues was that the bowels were so distended already that when they attempted to pull them up to create the stoma it kept wanting to "go back in". So they used catheter tubing to tie around it to make sure it stays out of the body and doesn't get sucked back in. Ok, how freakin creepy is that! It could get "sucked back in"! What! Ew! And ouch! And… well… EW! But he said the catheter tube tie "should" hold it in place I just need to keep an eye on it. I have not yet passed stool so that is a bit of a concern. They would like to get things moving along. So he said he is ordering me LOTS of laxatives and softeners. When I hear this I cringe a little because I instantly am reminded of all the times I've spend on the toilet curled over with cramping and pain trying trying trying to go. I would take all the laxatives and softeners I could and most of the time nothing would happen. So this time I'm hoping we have better results. Well, we know I won't be curled up in the bathroom at least Fingers crossed that things start moving normally and that it's not painful.

This is my second day post op, they are still not sure when I'll be going home but it could be as early as tomorrow if all goes well. It looks like I will be home for christmas! For that I am grateful. But, I've been thinking about the people that will be here for the holiday. I know how much I was dreading it just because it seems kind of sad to sit in a hospital room rather than sitting around the christmas tree with family and friends. I feel for the ones that will be stuck here for the holiday, the hospital isn't decorated at all which is really surprising. I thought they would at least have some of the holiday spirit through the hallways and waiting areas but there isn't a candy cane in sight. Maybe this is their effort to be "politically correct" but I think it sucks! I'm going to talk to them here to see if I can come back on Christmas with bags of crossword puzzle books, candy canes, cookies, lotions, chapstick, and other goodies that you "want" in the hospital and pass them around the various areas. Bring a little holiday cheer to the rooms even if it is for "just a minute". I don't know if I'll be feeling up to it and someone may hafta push me around in wheelchair. I don't even know that I can pull this idea off with such short notice, but I'm certainly going to try. I know this type of thing would've made my day a little brighter if I was stuck here, so I'll see what I can do. It's going to be a quiet holiday for us this year, just me, Roy, my mom, and Dean. Probably exactly what I need.

Lots of stuff is up in the air right now. Not sure when I'll be going home. Not sure when my bowels will start moving again. Not sure when the pain will stop. But, what I do know for sure is that I am here for another day and I am blessed to be surrounded by such an amazing support group. I've received so many heart touching emails and cards from so many of you. I've had phone calls and texts. I can feel smiles being sent from all around me. Thank you all so much for all you support and love…. I am so lucky to have you in my life.

Sending hugs and smiles

Sarah

Sarah’s surgery went well this evening and she is currently resting in her room. The procedure was able to be performed laproscopically which is a less invasive procedure and means there is a much greater chance of a quick recovery (3-5 days instead of 5-7). Thank you all for your thoughts and well wishes. I’m sure Sarah will post another update once she feels up to it.

-Roy

Again I feel I have a lot to catch up on, things are changing and moving so fast but that's what I've learned cancer does - its constantly moving and changing. Let's start with part of the latest update… I had an appointment with Dr Gordon, the experimental guy, last week to talk about a clinical trial he's working on. He and Dr B thought it would be a good opportunity for me since they were seeing good results in the 2 patients they had used the drug on. This was the scary part about it - this is a stage one trial meaning it's never been used in humans before. But if it might work and it might help others someday I had nothing to lose at this point. As we talked Dr G explained that he was a little nervous because of something he saw in the PET scan and wanted me to have a diagnostic CT scan run (this just shows more detail of the disease). He was concerned about the disease that is pushing against my bowels. Apparently a side effect of this drug is potential bowel perforation and he felt that with the cancer in this location it may be adhered to the colon leading for larger potential of this issue. I had the diagnostic CT run the next day and he requested the results stat. So we wait….

The next morning we left for Alaska and just got home yesterday. Yesterday was quite the day of travel but more on that later. When we arrived in Fairbanks it was lightly snowing and dark so we couldn't really see much of the scenery. But what we could see on our drive to the log cabin was a winter wonderland. Forests dusted with snow and fresh untouched snow all over the ground… it was beautiful. The log cabin is very remote - 20 minutes outside of the town on snowy windy roads. The cabin was perfect. It was a true had built log cabin with all the necessary amenities. There was a bedroom downstairs with a large open living room and kitchen space. The ceilings were vaulted and there was a bedroom in an open loft upstairs. We were all very comfortable. They had walkie talkies in the cabin for us so if the Northern Lights were visible they would announce it over the walkie talkies. Unfortunately we were not able to see the lights either night we were there. Turns out we picked two snowy nights.

Dr G called me Friday night with test results. He wanted me to see a GI specialist prior to starting any kind of treatment he felt concerned about this obstruction in my bowel. They scheduled an appointment for me to see Dr Kim (who I saw back in September of last year when we talked about doing that big surgery) next Thursday. Ugh.

But, for now we were in Alaska, the wild frontier. We decided to go for a dog sled ride while we were there. This was an awesome experience. We drove about an hour through more snowy windy forest roads to get to a small cabin and dog kennel where they do the rides. We were greeted by a few of the dogs as soon as we arrived and then met Anita, Josh, and Garrett who run the facility. They are an amazing group of people and made us instantly feel welcome in their home. The dogs were quite a sight. They have 22 dogs on site and they raise them like family not like work dogs. They do this because they love it not because they have to. I would highly recommend doing this if you ever get the opportunity. They taught us a lot about how the dogs are raised, how the sleds work, how to harness the dogs, and MUSH! I was sitting on the sled with my feet straight out in front of me, the freezing air (it was -11), the snow hitting my face, and the rush of the dogs pulling us through the trail. The trail was a beautiful windy narrow path through the snow covered forest. It was a great experience that I will never forget. So I'd have to say that this made up for not seeing the Northern Lights. When we got back to the cabin I said "this wasn't on my bucket list but I'm going to go home and add it and cross it off!".

I honestly wasn't sure I was going to make it on the sled. I wasn't feeling very good that morning (Saturday). My stomach was a mess and I felt like there were aliens running around in my guts. I knew I was getting constipated but this was different. I felt nauseous and backed up all at once. I didn't want to eat or drink anything and I thought I for sure didn't want to drive an hour on windy bumpy roads. But, I'm glad that in the end I soldiered up and did it! They only took two people out at a time so Roy and I went first and our friends went second. Each ride was about an hour and I'd say we spent most of the day at the dog sled cabin. As we were leaving I was feeling more and more sick and finally had to ask to pull the car over. I jumped out and before I knew it I was vomiting in the snow. After that I made it home and went to bed. I slept for a few hours only to wake up sick again and again and again. The pain in my lower abdomen was awful and the aliens were having a party in my guts. Things were not good. But here I was in the middle of nowhere Alaska with my husband and friends for MY bucket list trip. I just couldn't muster through it and slept through the rest of that night. I must've slept pretty hard because Roy ended up packing both of our things that night because we had to leave super early the next day (Sunday) for our day of travel. This was yesterday… we were up at 5:30 and had to leave the cabin by 6:30am. Roy and I were on an 11am flight but our friends were on an 8am flight so we were at the airport 3 hours early. The Fairbanks Airport is tiny! There was one open coffee bar and some tables for us to sit at, one little tourist shop and that was it and we had three hours to kill. I still was not feeling very good but I was up and about for travel. Our first flight took us an hour from Fairbanks to Anchorage. We had a quick connection in Anchorage and were headed to Seattle. Our plan had to be de-iced so we left a little later than scheduled but we were off. It didn't take long in the air before my nausea overtook me again and I found myself vomiting in the "seat occupied" bag in the seat pocket in front of me. I got up and went to the back of the plane. The flight attendants tried to help me but there wasn't much anyone could do. I was sitting on the floor at the back of the plane for most of the 3 hour flight with my head in a trash bag. I've never been so sick or felt so awful. I was shaking and cold, tired and just sick. I felt awful. I kept thinking can I get on the plane in Seattle or will I need to go to the ER in Seattle. The plane landed and we had minutes to get to our connecting flight. So I again soldiered up and got on the plane from Seattle to home. It was a little more than 2 hours. I took some meds that seemed to be staying down finally so I was able to rest. I made myself just shut down and sleep the whole flight. We made it home around 11:00pm last night. Phew! It was a looooonnnnngggggg day.

I had been texting super nurse Michele while I was feeling sick the past two days. I explained that I hadn't eaten, the vomiting, and the other symptoms I was having. She managed to get me scheduled with the GI Specialist, Dr. Kim, earlier. I saw him today. I am still in an extreme amount of pain. Sometimes I find myself pacing the house taking deep breaths just trying to center myself and maybe step away from the pain somehow. There is so much discomfort. It's like there is a bowling ball in my gut. I don't want to and really pretty much can't eat - there's no where for food to go at this point. Things are not good. In my meeting with Dr Kim I found out this obstruction is causing a lot of problems. There is a large amount of stool backed up which is causing a majority of my symptoms. We have to go to surgery to do what they are calling Palliative Colostomy. This means they are going to cut out the diseased section of bowels and I will have a colostomy bag. If you don't know what this is please google it - I really don't want to explain that here but it's basically a poop bag. I'm terrified. This is something I've said I would never do - I didn’t want to end up with BAGS… and here I am stuck in the situation where if I don't have the surgery I will most likely die to a painful bowel obstruction or perforation. I'm in so much pain I don't know how to live with it… So bag it is. There is no other way I would have this surgery if I didn't have to to survive. The surgery is scheduled for this Thursday the 19th at Good Samaritan Hospital in Phoenix. Recovery can be 5-7 days so it looks like I'll be spending this Christmas in the hospital. Sigh. I'm sad, scared, and extremely depressed about all of this but I don't get a choice in it. It is was it is.

So, I may not have an update for a while but will ask that Roy post to let everyone know how surgery goes. I'm sending everyone warm holiday wishes and lots of hugs and smiles. I love you all.

Xoxo - Sarah

There is a lot to catch up on. Let's start with the fun news. We had a fabulous Thanksgiving with the family in our home this year. It was so nice to have Roy's family all together and having the kids around was great. There were 16 of us, 4 are kids: my parents, Roy's parents, his grandma, his aunt, his brother, wife, and kids. This easily could've been chaotic but I had a plan. I, as always, laid my plan out in a color coded spreadsheet. Everyone had responsibilities for Thanksgiving. Someone had casserole and someone had trash duty, there was a bartender, a turkey chef, and 3 little artists that helped decorate. They laughed at my spreadsheet but… it worked Everyone had things to do on Thanksgiving and we all let everyone do their part so it worked. It was a nice day spent with the family - I couldn't ask for more. I feel blessed that Roy's family has embraced me and given me so much support and love. I am lucky to call them all family. I've said before that having cancer changes your perspective and it's times like these that I am very aware of this. I feel so grateful to have these moments with family. Every laugh, each hug, all the smiles, I try to memorize every moment and keep it with me. These are the moments that life is all about. I hope that all of you experienced these moments of your own this holiday season. Carry them with you always.

After the dust settled from all our visitors and Thanksgiving it was time to come back to the real world. I had my PET scan this past Tuesday and a consult with Dr. B yesterday to go over the results. As I suspected, the last chemo agent wasn't as effective as we'd hoped it would be. There is some disease progression. The good news is that it is still confined to the pelvis area, it has not spread to other organs or body parts. But they are seeing that in comparison to the last scan shows the cancer has gotten a little more active and some nodules are larger. It appears that some of the nodules are morphing together to create larger masses. Because it is confined to the pelvis it is pushing against the colon which is creating havoc on my entire digestive system. It is also pressing on the ureter so the stent I have placed is still necessary. It's so disappointing to be fighting so hard only to find that it's not working!

What does this mean? Well, it means that the cancer is winning the battle for now. But there are other options so we can keep fighting. Dr. B, Roy, and I talked through our options. There are a few chemo agents that we haven't tried yet. Dr B feels that my best option is something experimental. He is partnering with Dr Gordon, the experimental guy, to determine what they think are the best next drugs to try. Roy asked about surgery, he questioned if they could go in and debulk some of the disease and maybe relieve some of my side effects. Unfortunately, Dr B was quick to say that he felt there was more opportunity for more issues than benefits from surgery at this point.

What are next steps? We know chemo will be resumed soon we just aren't sure which drugs to use yet. Once the docs talk Dr B will call me and we will get started. I have an appointment scheduled for the week of the 16th to work out details and plan a schedule with Michele.

How am I feeling? Not awesome. I mean this news is better than I thought it was going to be, but it's still not great news. No matter how many times I hear it it doesn't get any easier. It's been 4 weeks since my last chemo so I'm starting to feel the side effects from just the disease and it's not great. There is a lot of pain, pressure, constipation, nausea, lack of appetite… I'm managing all of this the best I can but I have come to understand that these things are just going to continue to progress. I'm working with another new Nurse Practitioner, Bill. He works for a Palliative care/Hospice that works with my oncology center. Michele (my super nurse) set up the appt and thought he would be helpful in managing my medications. Bill is very nice and has been super helpful already. His primary focus is my medication schedule and ensuring that my side effects are managed effectively. He will make home visits from time to time to check in. I think it will be helpful to have him join my team of caretakers.

Roy and I are just trying to live our lives so we are preparing for our next big adventure! We are going with some friends to Fairbanks Alaska next week. I know I know we are crazy and it's going to be freezing but we are hoping to see the Northern Lights There is supposed to be great viewing opportunities and this is the best time of year to go. Fingers crossed that we get to see them!

As you can see I've been on quite the roller coaster lately. There have been great highs and some crummy lows over the past month. I try to focus on the highs and sweep through the lows as fast as I can. I wish I always had good news to share on my blog but sometimes I have to share the lows with you as well. It's been pretty stressful around here lately but we are doing our best to stay positive and keep moving forward. I still believe everything happens for a reason… sometimes it just takes a while to figure it all out.

Hugs and Smiles,

Sarah

So I have these days where the nausea over takes me. The other day it hit me and I had to ask Roy to pull over into an empty parking lot so I could jump out of the car and find myself keeled over throwing up. It's a horrible feeling and it comes out of nowhere. I am not a fan of this side effect. I've had this happen a few times and am hopeful it never happens again. My abdomen has felt bloated and constipated for a few days now. It's super uncomfortable. But there's not too much I can do. I'm taking laxatives and am just waiting. It's only two day so I'm not too worried yet but I am so uncomfortable. Hopefully I can clear up the problem soon.

We've had a lot of visitors this month. It's been nice to have family and friends in my home. I enjoy visiting with everyone. I just dropped our last guest at the airport, I came home and let my guard down again. Roy said "it's amazing the change in how you're feeling when family is here and when it's just us". What I realized is that I really am like a dog. I don't like to let my guard down and show my pain. It's too hard for me sometimes. I would rather pretend I'm not feeling so uncomfortable and enjoy spending time having fun with everyone. My friends have used the phrase "let your guard down" around me as well. I'm seeing a pattern here. But why? Why let my guard down? Sometimes in the quiet moments I'm alone I will let my guard down and expose some of the sadness or anger I talked about last post. Sometimes, like now, I let my guard down in front of Roy, but somehow its just not natural to do in front of everyone. Why make you see, sense, or feel the pain and discomfort the sadness or anger that I sometimes feel?

I recently had an anniversary of sorts. It's been 365 days since I came out of remission and started chemo. I've been receiving chemo for 365 days. That's crazy. And…. Frankly it's quite scary for me. The doctors told me 1-2 years and its already been a year - I know they don't "really" know your expiration date but I'm not going to pretend this isn't weighing on me every day. I wonder how much more of this poisoning my body can take. I'm fighting so hard but by the fourth dose of whatever treatment we are doing I can start feeling pressure and more discomfort. It is a sign that again another drug has stopped working. I'm feeling that now. And while I wait for the next scan and consult with my drs I wonder…. Are there more drugs we can try? Can my body take it? How long will this one work? Is there a clinical trial available somewhere out the for me? How much longer can I keep doing this? How hard can I keep pushing my body? It hurts. I'm tired.

Don't get me wrong… I'm not giving up! I'm going to keep fighting as hard and as long as I can! But when I think about letting my guard down here I think it's about being completely honest with not just all of you… but with myself. And these are the honest thoughts and feelings. I don't know what tomorrow holds for me, but I know that I have right now… so damn it… I'm going to enjoy it and smile through what tears may come.

Hugs & Smiles

Sarah

I've been writing a lot about life with chemo and the challenges that I face. What I haven't really had the strength as of yet to write about is the impact this has on the ones I love. This is a tough one for me and is already making me fight back tears. I hate to think about how much this has impacted the lives of the people around me. I am so blessed to say that I have this amazing group of people that I am lucky enough to call friends and I have a wonderful loving family. I love all of you dearly. It is so hard for me to know that unwillingly I have caused pain and sadness in many of these people's lives. I can't put myself in your shoes, but I can see and feel the impact my battle has brought to your lives.

Since I can't speak directly to how each of you have been impacted what I can speak to is how I've been dealing with everything. Maybe knowing more of how I'm emotionally dealing with all of this will help you. I will always be honest about my battle and if you ever want to ask or talk about it, just ask. I'm not afraid to talk about it… this is my reality. I am battling terminal cancer. Phew, that's a tough one… but that is what it is. We don't like to talk about it and we instead find ourselves in the land of denial. It's scary. It's heart breaking. It's difficult. It's reality. I think this was the hardest part for me to deal with…. This is my reality now. My life is all about fighting cancer to survive. It's not easy. It's a fight every single day, but I know this and continue to wake up every morning grateful for a new day.

I obviously am not happy about having this in my life, but I have to accept it. I don't get a choice about having cancer - that's happening whether I like it or not. What I do get to choose is how I deal with it. I know that my time is limited but I get to choose what I want to do with the rest of it. I can choose to be sad - but how is that going to help anything? I can choose to be mad - but that will just make things worse. I can choose to pretend it's not happening - but this isn't healthy. I instead choose to be grateful. I am so grateful for every new day. I don't take anything for granted anymore. I want to spend my time enjoying life - not being sad, mad, or in denial. I want to spend time with my family and friends. I want to laugh and smile. I want to enjoy as much as I can.

Don't get me wrong. I have moments of all of these crazy emotions. I get sad, sometimes I get crazy super sad. But, I don't allow myself to stay there. It would be so easy to just keep crying, but I will make myself stop. Sometimes I will literally look myself in the mirror and talk myself back out of the sadness. I get angry. This is a more difficult one because I don't always know how to get it out. So Roy bought me a punching bag! Perfect! I go in there and beat the crap out of the thing and walk away feeling a little better. And I find myself slipping into denial often. This is the hardest of them all because I don't always recognize that I'm doing it. But it's also the easiest to snap out of once I realize it.

I have learned that if you allow an emotion like sadness or anger overtake you for 20 minutes or longer it will have a lasting impact. Meaning it's a quick turn to depression or associated health issues if you let these things take over for more than 20 minutes. So I made a pact with myself that when I feel I am slipping into one of these emotions I will look at the clock and give myself 15 minutes. When time is up I have to snap out of it… sometimes that is when I go to the mirror and face myself about it. This may sound crazy, but it truly has worked for me. This allows me to let out some of these emotions but not get pulled into the darkness that comes with cancer.

I'm not sure how much of this helps all of you, but I'm hopeful that you at least now know how I am emotionally dealing with everything. None of this is easy, not just for me but also all of my family and friends. It brings tears to my eyes and pain to my heart to know that I have brought sadness into the lives of the people I love. Please know that more than anything I want to leave a smile behind, not sadness. I want you all to know that I choose to be happy through all of this as much as possible because I don't want to waste a moment. I hope you can do the same. Don't be sad for me, be happy… smile because it feels good.

Hugs & Smiles,

Sarah 

I have to admit that this chemo has hit me pretty hard. Last week I had my flu shot and then went to my oncology office for fluids. Sometimes when I can tell I'm crashing from treatment I go get IV fluids and it gives my body a little boost. So, being a "do all that I can do" patient I tried to catch it early and get some fluids. Little did I know that the next morning I would wake up running to the bathroom to violently start vomiting. It was uncontrollable all morning. I had the hot chills, I was sweating and just all of the sudden I would need to rush to the bathroom. Over and over and over again. It was torture. Finally I reached out to Michele for advice on what to do since I couldn’t keep any of my meds down. She told me to try the suppository for nausea - ugh, sigh, stomp. Fine… I went for it. And must admit I finally started to feel some reprieve about 30 minutes later. These things also knock me out so I got a few good hours of sleep in. I spent the rest of the day medicated and wrapped in a blanket. Sadly this was the same day as the Cardinals home Thursday night game. One of the biggest games of the year against the seahawks. We had plans to tailgate and enjoy the day. I had to give up my ticket to a friend. I was sad to stay home, but glad I did - I was terribly sick. Rest, rest, rest. I watched the game from the big red chair curled up in a blanket with Ben.

The next day I started feeling better and slowly reintroduced food to my system. All seemed to be going well. I was just still super tired so needed another day of taking it easy. By the weekend I was feeling better. Phew. Sunday I met some friends to walk around the zoo a little. It was good to spend time with friends and get out and enjoy the beautiful weather. Later that day my parents came over for dinner. We grilled up some steaks and kept it a simple night at home together. It was a nice evening.

Monday I had an out patient procedure at the hospital. When I had the kidney stent placed in July they told me it would need to be replaced in 3 months. The time had come… too fast in my opinion but here I was in need of a stent replacement. Roy spent the day at the hospital with me. I'm so very lucky to have such a supportive and amazing husband. I can't imagine going through all of this crap without him by my side holding my hand. No matter how many times I have "procedures" and "treatments" done, they are scary every time. It never gets easier. I try to make the best out of it. I make jokes with the doctors and nurses. I try to find funny topics with Roy. I guess it's my attempt at making a super crappy situation a little bit better. I could mope and cry and be full of anger about all if it but what good would any of that do? So I go to the opposite extreme and do my best to make the best of a bad situation. I had a really good group of professionals help me through this day. My pre-surgical nurse, Heather, was super nice and helpful. They were able to use my chest port rather than put in an IV line because of her and I am so grateful. Sometimes anesthesiologists don't like to use a chest port (why I still don't understand) but Heather was able to make it happen for me. My veins are totally shot from all the treatments and poking and proding so putting in an IV line can be very challenging and they often blow out at the most inconvenient time (like during surgery!). Using the chest port was a great way to start the process. I met the anesthesiologist and loved him. He was probably the best I've had… I remained knocked out during the procedure, I don't remember any of it, and I woke up peacefully. This is not always how this goes. I've been known to wake up during procedures, remembering all the bad stuff, and often waking up in a panic. So, this was the best go to sleep and wake up process I've had in awhile. I'll definitely be requesting his services again when needed. The procedure it's self went by the book. Phew - for once everything went as it should. No complications, no issues. He was able to go in, remove the existing stent, and put in a new one. Ta da! As for me, I was quite tired and sore the rest of the day. Back to the big hair wrapped in a blanket with Ben. Ah, the comforts of home. My dear friend and neighbor made us a delicious dinner and Roy did a great job taking care of me!

Today is the next day and I am still tired and sore. My body is requiring extra pain meds today so those kinda make me goofy tired. But, overall I'm just so glad it all went well that I can deal with the pain. Tomorrow will be better. Speaking of tomorrow I guess I can give a quick update on what's next. We are planning to do one more cycle of Doxil (Chemo) on November 5th (which by the way I need a chemo buddy for so if anyone is available please let me know). After this treatment we are going to run a PET Scan on December 2nd. I'll have a follow up consultation with my oncologist the following week to see what next steps are. If the scans looks good and we see disease shrinking or stabilizing we will probably keep going with the Doxil. Knowing that it's working will help me find the strength to keep fighting through the side effects. If the scans aren't good we will have to go back to my experimental doc to see if there are any clinical trials available. If nothing is available we go back to the drawing board. I'll keep everyone posted.

In between all of this stuff I've been dealing with a lot of "responsibilities". Things that I've been trying to avoid. I wouldn't say I'm in "denial" I'd just say "I don't wanna"…. I've had to process many things under the "terminally ill" category. Yuck! It's a constant in your face "you're dying" message every day. I hate it and I don't wanna. But sometimes you have to deal with things you don't wanna so I've been sucking it up and just getting it done. Dealing with finances, insurance, bills, living wills, power of attorney, 401k, IRA, all these things require my attention right now. I'm slowly checking things off the list but it is emotionally draining. My hope is that once it's done, it's done and I can move on.

I just keep trying to live in the moment and enjoy everything I have. It's been a little rough lately with all these side effects, procedures, and "things" that I have to deal with but I'm working on fitting in some fun like my morning at the zoo. I need those things to keep me going and my spirits high. It's easy to spend my days in my PJs wrapped in a blanket with Ben. This week we are having some work done in the house and family will be in town over the weekend. Roy's brother, wife and two daughters are coming for a football game. I'm really excited to see them… it's been too long. And I love having the little ones around, they keep me smiling that's for sure!

We have a lot of visitors over the next month and I'm so excited to see everyone. The weather here is beautiful this time of year so Roy and I try not to travel but to instead get everyone we know to come here. Apparently we are doing a good job. We have friends coming in early November for a football game weekend. Another dear friend is coming to visit for a long weekend to play. Then all the family is coming here for Thanksgiving. I think it will be a great holiday. I can't wait. More to come on that later.

For now, I'm working on a few art projects and attempting to keep up on my blogging If anyone wants to sign up for a weekend visit in December we have weekends available!

Sending hugs and smiles,

Sarah

Yesterday was chemo day. I have a love hate relationship with these days. Obviously I hate the getting poisoned part - probably goes without saying. But, I love my family at the oncology office. This may sound strange, but my medical team has become an extension of my family to me. It's actually more than that, they are a new family for me. I've talked about many of my nurses before but it's been awhile. Michele is my super-nurse, my other mom. She's my oncologists nurse practitioner and she's amazeballs. I don't know what I would do without her holding my hand throughout this process. She is someone I can call, text, or talk to about anything and everything. She always understands and if she doesn't have the answers right away she will find them. She is my caretaker, my nurse, my friend, and my family. We have been known to get together outside of the medical setting just as friends and I love her for that. She truly cares. And this, I feel, is a double edge sword. I mean, there's no way she could do this job if she got so attached to each of her patients. It's emotionally just too hard. But, I am grateful that we have made this kind of connection so I have someone at my side that I can talk to about absolutely anything easily and be completely open with her. There are two other nurses that take care of me on chemo days, Anna and Andrea. These girls have also become more than just nurses to me, they are friends. They genuinely care about how I'm feeling, what I've been up to, and managing my treatment plan. They often know how I feel before they even ask. They give me hugs and hold my hand whenever I need it. This team of professionals are my lifeline. I don't know how I would get through all of this without all their support - on so many levels.

But, it's more than just the nurses. It's the doctors, the front desk staff, the patient advocates, the nurse assistants. There are so many people that make such a difference in how my treatment day will go. The staff at the front desk know my story and know me by name. They are always very helpful and kind. They genuinely want to know how I'm doing. This makes a big difference and helps me feel a little stronger knowing that they are also in my corner cheering me on. There is a financial/insurance specialist, Marisa, who has really helped me navigate the extreme costs of treatment. She helps me work with the insurance, she attempts to get me financial aid, and also cheers me on.

It's even more than just the staff at my amazing oncology office, it's the other patients. I've learned from my friends that the thought of going into a chemo infusion room cares the shit out of people. Of course this is completely understandable but I thought I'd try to give you all a little insight into how this all really goes down. It's only scary if you make it scary. I have chosen to make it as fun as I can. I mean I get to see all my friends for the day so that's a good start. Let me start by describing the room. The chemo infusion room is full of windows and lots of light - it's not a dark scary room where everyone is curtained off into their own little bubbles. The room has a big wrap around desk at the front where the nurses work. There is a half wall that separates the room into two areas. Each area has about a dozen reclining chairs for the patients and plenty of extra chairs for visitors. There are lots of IV stands, blankets, pillows, books, magazines, movies, puzzles, etc. The chairs are set up in a horseshoe shape on each side of the half wall. This allows for patients to chat with each other and more of an open community type of feel. You cannot drive yourself to or from chemo so having a chemo buddy is essential and most people have someone with them that stays around durig treatment. My mom is my primary chemo buddy, she comes with me most weeks. But, sometimes I've had friends bring me instead for a change of pace. For me, this is time to just sit with no distractions and catch up with whoever I'm with. Sometimes we play games on the iPad or cards. Sometimes we just talk and the day flys by. But, I will say that each patient is different. There was one woman I met who would drive up from Tucson (about 2.5 hrs away) for treatment. She would make this a girls trip with 3 of her girlfriends. They would drive up together do some fun stuff together, stay the night in town and come to chemo the next day together. They were a fun group. I'm happy to say that last I heard she was done with chemo and currently in remission. I've met women of all ages at chemo. I can always spot the women who have crawled into the deep dark whole of cancer and stayed there. This is easy to do. Cancer can definitely bring you down - the key is accepting it and fighting and doing the best that you can with what you've got. I've been in the deep dark hole of cancer and it's scary there. But I'm not going to lie, there are still times when I get sucked into this hole and have to keep climbing back out… it's always a battle. But, I feel for the women that I see that have chosen to live in the hole by themselves. They come to treatment alone, they cover themselves in a blanket and just keep to themselves. I just want to hug them and tell them it's going to be ok. But, it's a tough one because as a cancer patient I know it's not going to be ok. So the best I can do is try to help them when I can, give them a smile, sometimes it's even just a simple hello that can make a difference. There are no easy answers when it comes to cancer. But, I have made a number of friends in chemo. We all generally talk to each other and sometimes we share our side effects what works and what doesn't and other tricks of the trade.

So, chemo days aren't scary days - at least they don't have to be. The goal is to make the most out of a really bad situation. The nursing team, the office staff, and the patients all play a part in trying to make this bad situation a good experience. I guess the question this leads to is what happens next.

Today is the day after chemo and while I don't feel like a rock star I'm not at the bottom of the barrel. The "chemo hangover" usually doesn't truly set in for a couple days. When they give me the chemo they also give me IV steroids to help prevent a reaction. The steroids keep me pumped for a couple days which fights off the hangover. But once those steroids wear off the chemo hits me like a brick to the head. For now, I'm in slow motion, tired, and just not feeling my best. Still manageable though. My goal today is to try to prepare the "nest" for the next week when I do feel like I’m at the bottom of the barrel. I clean a little, fill the fridge, prep meals, and pull together some projects I can work on while I feel crappy. I've been trying to get back to my art so I will put together little packets of art projects that I can pull out and sit in "big red" (this is the big red recliner chair that came with Roy - it's really his chair and he can almost always be found in it, but while he's at work and I feel crappy it's all mine!) and just focus on a project and try not to think about how ucky I feel. Sometimes this works and sometimes it doesn't but I'm glad to have them readily available. Its little things like this that can really make a difference. Having the house a little cleaner and knowing that I don't have to worry about food eases my mind. The little projects help me find a quick distraction.

This is just a little insight into my world. It's definitely changed since I've gone on disability. I still miss work from time to time, but I know that walking away was the best thing I could do not just for me but for the company as well. I had to let go of the stress of the corporate environment and focus on me. Not an easy decision and a try acknowledgement of what is really happening, but it is what it is and this is all a part of acceptance. Like I said, it's easy to go to the dark corners that cancer creates and it's constantly a battle to climb out of the dark. But, I realize that I will never survive in the dark - I need the sunshine, my friends, my family… my life. I'm alive now and so grateful for the day - I don't want to take it for granted!

Sending hugs & smiles

Sarah