Cinco de Chemo

Yesterday we finally got the results of the CT Scan comparison and the report was....the lesions/tumors in the liver have decreased in both quantity and size, and the enlarged lymph nodes are also noticeably smaller!!! I don't have a copy of the most recent scan to post (nor have I seen it), but here is a picture for your viewing pleasure of the first scan I received back in July. I've debated whether to ever post this picture...reasons being its a bit depressing to see my swiss cheese liver, I still don't feel like that is inside of me, and in a way it forces me to confront how serious my diagnosis is.

If you need a little help distinguishing what is what, this is a very thin slice of my mid abdomen. The liver is the large organ on the left. A healthy liver would show up a solid grey...each of the spots on mine is a tumor or what they call lesion. The white circles towards the bottom of the image are my kidneys on either side of my spinal column. The thin white slits around the perimeter are ribs. There is a spleen and a pancreas in there as well. My epidermis and dermis are showing!!

But the news we received yesterday is very encouraging...there was always the chance that my tumors would not respond to chemo at all, and having to wait so long for the results was torture! As you can see, while this is great news, we still have many a tumor to get rid of before I am a candidate for the liver resection surgery. I have no doubt that these results are a combination of the chemo and all the prayers and faith from each of you. I don't know how to thank you enough! Our prayers are being answered.

Now that you've seen my insides, I can't help but share one more bit of good news from my appointment yesterday. In my Round 4 post I mentioned the tumor marker measured through my blood draws, CEA. Two weeks ago it was at around 8, and my blood work from Monday shows another downward trend, it's now at 5.5!

We talked more seriously about when Dr. Bachrach thinks I should have the colon resection, and his recommendation was in the next month. So, I'll be setting up some consultation appointments with different surgeons, and making that decision very soon. We have some very good recommendations of surgeons who specialize in laproscopic colon resection, so I'm anxious to see if I am a candidate for that, or if I'll be sporting a scar right down me whole middle! I referred to this as the standard 'fillet' method to my mom the other day, I don't think she liked the reference much....but its more or less what happens! I actually think it could be a pretty cool battle wound, think of the great stories I could make up to tell my kids or nieces/nephews about how it happened...a sword and box magic trick gone very bad... but then I come back to reality and the longer recovery time, and higher potential of complications quickly reminds me why its not at all worth wanting it if I'm a laproscopic candidate.

I've always loved watching the surgeries on Discovery Health, but the closer my own gets, I've found them very scary and steered clear while channel surfing. This isn't really a surprise, and I'm sure quite normal, but I thought I was being a little bit of a baby, so the other day I forced myself to watch a gastric bypass and can report I'm feeling much less anxious. People have surgery everyday, many times elective and have very few complications. The less I fear, I think the better off I am!

I guess thats all the updating I have for now! Thank you, Thank you, Thank you for your prayers!!!

Soapbox

The pink ribbon is synonymous with Breast Cancer... I don't know about you, but I assumed that if there was a ribbon for Colon Cancer, it would be brown, but it's not... it's royal blue. :)



Often times when people experience a particular disease, or some unfortunate event they develop a conviction or desire to reach out to others who can relate, to organize fundraisers, or spread awareness or education about the topic. Its where organizations and foundations are born like Mothers Against Drunk Driving or the Lance Armstrong Foundation.

I'll admit right now that I have that little desire to in some small way 'educate people' in the hopes that they can take preventative measures to avoid ending up in a similar situation to the one I've found myself in. So if you'll humor me for just one post on this blog, I promise it will be the only one. And it will be short and sweet!

Here are a few statistics (from a credible source, American Cancer Society)

• Colorectal cancer is the second leading cause of cancer death in the US. Approximately 147,000 people will be diagnosed with colorectal cancer this year, and almost 57,000 will die from the disease.

• Colorectal cancer is a highly preventable and treatable cancer when caught in the early stages. Tens of thousands of lives could be saved every year through proper screening. Almost all colorectal cancers begin as polyps in the colon that can be removed during a colonoscopy. When polyps are removed, colorectal cancer can be stopped before it even starts.

• A personal or family history of colorectal cancer, certain other cancers, colon polyps, or other bowel diseases increase your risk of developing colorectal cancer. Anyone can help prevent colorectal cancer by exercising regularly, eating a low-fat high-fiber diet (whole grains, fruits & veggies), maintaining a healthy weight, and not smoking.

Click here for information on Colon Cancer screening recommendations from the ACS.

As I'm sure you're well aware, Colon Cancer is not the only cancer that has available screening for early detection and prevention. With that being said... allow me to nag you :)

Have you had your annual...
Mammogram?
PAP Smear?
Colonoscopy?
Prostate exam?
Blood work?


The 'standard' for starting colon screening is age 50...although there are many groups who are pushing to lower that age to 40. I know many of the people who read this blog are quite a few years away from needing to start thinking about their first colonoscopy, but we all have parents, grandparents, friends, aunts and uncles who are 'of age'. Encourage them to schedule a screening....the good news is that if it comes back in the clear and no polyps are found the general thought is that you do not need to be screened again for another 10 years!! That is some good piece of mind!

No one likes to be preached to, and I hope you know that is not my intent with this post. I just feel like my eyes have been opened and I have a whole new perspective on becoming an advocate for one's own health. There wasn't much I could have done by way of screening to help my own situation, but there are tests available to us that could catch something early (God forbid) for you or one of your loved ones.

Happy screening :)

Round 4

Happy 22nd Birthday to my little brother, David, today!

Hard to believe, but I am again hooked up to the chemo ball for round 4! The time between treatments goes by pretty quickly.

We were able to get away for the long weekend for a much needed escape; my aunt and uncle were not heading up to their cabin and offered to let us use it. It was great to have a change of scenery for me, and be able to sit outside and enjoy the cool mountain weather…fun for Justin to do one of his favorite hobbies, quading with friends! Normally I’d be along for the ride, but I had to be honest with myself, I'm a weakling right now, so I opted out except for a few leisurely trips when there were kiddos in tow, and I could be a passenger. We had a great time, thank you Kent and Gail!!

Justin, Kevin and Jackie got a little muddy after a rainstorm!

Sam and Rachel...that's my helmet she is wearing, does this mean I have the same sized noggin as a 5 year old? At least it got used :)

I had a few exciting events over the last two weeks that I could have blogged about, but I admittedly wasn’t feeling too well. Two weekends ago on Saturday morning I woke up unusually late and strolled out to the family room and sat down on the couch. I was gearing up to eat breakfast when I started to feel a bit nauseous, and stood up to make my way to the bathroom. The last thing I remember is feeling a little ‘weird’ as I walked in and sliding down with my back to the vanity…then I remember Justin over me talking on the phone telling someone in a slightly panicked tone that I just finished a chemo treatment on Thursday, and wondering who the heck he was talking to. Then I realized I was lying on the bathroom floor, and being the germ-a-phobe I am knew I was not their by choice! Justin helped me sit up, and by this time I deduced that I had passed out. Justin had been in the family room with me when I got up to go to the bathroom, and heard a commotion, something being knocked over. He went in to check on me, and I was unconscious, white eyes, and stiff. He tried to wake me up with no success, and that’s when he called 911. After what he said was about a minute is when I came to. The fire department was at our door within a minute of when Justin hung up the phone, I was very impressed. He helped me out of the bathroom and back into the living room where there was a buzz of activity with about 7 fire fighters and 2 EMTs. They checked my blood pressure, sugar, heart rate and everything seemed within the normal range, however they were worried that I had had a seizure based on what Justin described to them, and they wanted to take me to the ER. We live only about 2 miles from the hospital, and being the cheapskate I am I decided that since them taking me wouldn't get me in any faster if I absolutely had to go that I’d rather drive myself, rather, Justin drive (I do still have some common sense!) One of the nice fire fighters told me that he was worried that the cancer had spread to my brain, I just smiled and thought, or... maybe I just stood up to fast : ) No reason to jump to awful conclusions right away!

We signed the paper work that said we declined to be transferred to the hospital by them and gave the on call Oncologist from my office a call to see if we needed to actually go to the ER or not. We waited about 30 minutes to hear back and we weren’t too surprised to hear him say "yes", so we packed a few things up and headed over. I must say that one positive of being on Chemo is that you get the royal treatment at the ER! They don’t want you sitting around people who could get you sick, so they took me right back to a private room. It’s funny the looks you get from people when you’re wearing a mask in public…I used to think I needed to avoid people with masks, but now I know people with masks were more than likely trying to avoid me and my germs : ) Even though I didn’t have to sit in the waiting room long, we spent the rest of the day at the ER, of course you have to go through their protocol of tests, but we really just were looking to have a CT Scan of my brain and abdomen to rule out blood clots, or internal bleeding.

At 9:00 or so that night we got the okay to be discharged, and this is what they concluded (directly from my discharge paperwork):

“Today it has been decided that you had Syncope (Fainting Spell).”

Well I figured that much….but I guess its better to be safe than sorry! We were glad that it wasn't something more serious.

I took it easy for the next few days, and then had another what I will call ‘episode’, this time I had a significant amount of blood in my stool again. So again I called my Oncologist as I’d been instructed to do. As part of the chemo cocktail, I am on a drug called Avastin, which is designed to slow blood vessel growth. The hope is that this will not only target the tumor in my colon, but the main focus as I understand it is for the liver tumors since the tumor in my colon can ‘easily’ be removed with surgery at this point. The drug by nature is making me more susceptible to bleeding, particularly from the colon tumor so I’m supposed to be on high alert for any blood that may be passed. My doctor wanted me to come in ASAP that day, so in we went. The first thing he said when he walked in to the exam room was, “You’re scaring me.” I had to laugh, it had been an eventful past few days between the ER visit and now this. I told him that seeing him every other week just wasn’t enough! We talked about the bloody stool, and how many more doses of Avastin he was planning to administer. He was only planning to give me one more dose (round 4) before giving my body a break, and ceasing far enough in advance to get it out of my system in preparation for the colon resection surgery. He decided that I should have my blood drawn every day for the rest of the week to be sure that I wasn’t bleeding internally and to monitor my other numbers.

The rest of last week was pretty unremarkable, I am conquering my fear of needles after 5 consecutive blood draws. Back when I posted about the port-a-cath, I had no idea how great it would be. As long as it keeps working properly I’m able to get blood drawn from it as well as the chemo administered through it. IT IS GREAT! Just one poke every time, guaranteed!

We had some good news yesterday at my pre-chemo appointment with the Oncologist, but before I go into detail about that, I'll mention that we decided not to do Avastin this round. We elected to do this to prepare for surgery, which will be no sooner than 6 weeks from the last Avastin treatment two weeks ago. I'll continue on the other Chemo drugs in the meantime, and at some point in the future, after surgery on the colon tumor I may or may not be put back on the Avastin. Now, onto this good news!

There is a tumor marker that they monitor through my blood work called Carcinoembryonic antigen, or CEA. A normal person has a number somewhere around 2.5, and someone with cancer like me has a number off the charts. Back in the middle of July, my number was 66. Two weeks ago it was at 35, and as of last Friday, 8.8! This number will probably still fluctuate from week to week, so it could go back up…and the Dr. warned that it can be an unpredictable indicator of how chemo is working….but with such a significant drop, we’ll take it for now! : ) I should also be getting an update on the liver tumors this week after the Dr. has a chance to compare my initial CT scan from back in July to the one taken in the ER. So stay tuned and keep your fingers crossed that there will be some more good news from that : )

A few weeks ago we had some requests for pictures (this one is for you Jody!). I've avoided posting pictures of myself because I'm not lookin my best these days....but I agree that a blog without pictures is a little ho-hum, and Justin has taken on the role of cancer historian…here are some of the latest (and ones I'm willing to publish!)….even a video he took so you can see all the exciting action live from round 3.

Above - The infamous "Ball-o-Chemo"

My new best friend, Port-a-Cath

I'll be sure to post any news we get this week about the CT Scan comparison. Hope you all had a great Labor Day weekend. Thank you for your prayers and support!

3rd Round

Having been a runner for most of my life I've been mentally comparing my chemo treatments to workouts or a races. The mile, or 4 laps around a track (which also happened to be my favorite race in high school) works nicely since I've got 12 treatments of chemo that I'm shooting for, every three is a lap. Figuratively speaking I'm just about finished with my first lap of a mile race, and feelin good!

I haven't had much to report by way of news since round 2, it turned out to be much better than round 1, and I only had a few days where I felt really bad. I have noticed the nueropathy side effect more in rounds 2 and 3. My hands and feet have been a little numb, clammy and at times a little weak...some people have lasting problems with this after they conclude chemo treatments and others don't.

For this 3rd round the doctor switched me to a new anti-nausea medicine and I'm happy to report it seems to be working the best out of the three I've tried with little of the blurred vision, headaches etc that the others seemed to cause. I spent my time at the clinic yesterday watching the Olympics and chatting with my one neighbor, Maryanne, a fellow Colon Cancer patient. I'm not sure how old she was, I'm guessing late 60's early 70's, but she was very up beat and positive. She was on her 10th of 12 chemo treatments, which is always inspiring for me to see someone finishing strong.

Another reason for the lull in blog entry since round 2 has been 'blogger's block'. I mentioned that in my next few posts I was going to attempt to articulate some of the things I've learned up to this point...its proving to be a much harder thing to do than I thought. I started a few posts but was never able to finish them or feel like I was expressing what I wanted to express.

So here is a brief, but very humbling lesson that I've learned. I've mentioned this before, but words just don't express how supported I've felt from friends and family. Every email, voicemail, comment on this blog and text message that I've received have meant more to me than the people leaving it will ever know. The same goes even more so for all the prayers, and the good I know they are doing.

We've had more offers to come help out with chores around the house, and yard, dinners and errands than we know what to do with. There is really no other way for me to describe it other than just a complete outpooring of love. I've had several friends say to me something like, "I'm so sorry that it takes something like this happening for me to really make the effort to stay in touch." I'm equally as guilty and wonder what kind of friend I've been through the years to people as they have gone through difficult experiences in their lives...and what kind of friend I've remained in my 'ordinary friendships' where there haven't been any major events to motivate us to stay in touch better. Why is it that I haven't made more time to keep in touch? Well I guess the answer is easy, I thouht I was too busy. Knowing this makes all the support we've received all the more humbling, followed by feelings of not being worthy to receive it.

So this is the lesson I'll say has been reiterated instead of learned: People are good, and they have good hearts. I say reiterated, because I've never had the belief or thought that mankind as a whole had 'bad hearts', but through this experience I've just been reminded of the goodness of people. They have gone out of their way to show love and support to myself and family. I'm inspired to try and be the best I can be because of their examples.

As always thank you for your prayers!

2nd Round

On Wednesday I started my second round of Chemo! It has been much less eventful than the first time around, and I haven't even been all that sick... yet :) After the first round I didn't have any of the potential side effects common with my particular drugs, the most frequently reported of which has to do with intense sensations of pain with cold on the hands and in the throat. It was described to me like a feeling of a 'peel' in your throat when you swallow something cold. This round I've experienced a little of that, but it hasn't been too bad. This is one of the side effects that often times gets so bad that it prevents people from continuing chemo treatments all together.

We met with Dr. Bachrach at Desert Oncology Associates on Tuesday. He was recommended to us by several Doctors, and the appointment went really well, he was very thorough and optimistic...this 'professional optimism' as I like to call it is very important to me. I really don't have a desire to be treated by a Doctor who doesn't believe that I have the chance to beat this, regardless of what the statistics may point to. I may have already mentioned this in a previous post, but we stopped looking at statistics. I had always liked 'statistics' and what information they can offer or infer....until this all happened. I'm an individual, my situation is unique and I'm not planning to be someone's 'statistic'.

So after feeling good about the meeting with Dr. Bachrach we were able to schedule my next Chemo appointment for the following day, Wednesday. The clinic is literally 3 minutes from our house in the Medical Plaza by the hospital...how could it be any more convienient!? This time I didn't have a private room with a bed like at Mayo, the treatment room is just lined with recliners and 'trees' (IV poles and pumps), not really even any room to have someone sit there with you. Most people sit in there for a couple hours and read, sleep, watch movies etc. while they are getting pumped full of drugs. My neighbors were Patricia, a woman in her 60's with Lung Cancer and an older gentleman who I never got the chance to talk to, he was a little hard of hearing and pretty focused on his crossword puzzle. Patricia and I had a nice chat, and I was inspired by her optimism. She told me she was jealous that I still had my hair...I was the only person in the room who did. I'm not really sure why my drugs don't cause it to fall out for the majority of people, and I had mixed feelings about this. Don't you think it could be kind of fun to have an excuse to be a woman and shave your head? :) I think I'd even stick some little bows on with honey like you do for bald newborn girls...

After I was done at the Clinic I headed home where a home health company delivered a 'ball-o-chemo' that serves the same purpose as the pump I had at Mayo, with the added bonus of no pumping noise ever 5 minutes. Later a nurse came and hooked it up to my port-a-cath and its slowly been shrinking over the last 48 hours. I'm pretty facinated with this little thing and how it works. The nurse will come back this evening to un-hook me and I'll be tube free for another two weeks!

One thing that has been surprising to me is how much I've learned in this past month. I've been told by other cancer patients that I will be amazed at the life lessons I will learn through the experience, lessons many of them say they would go through the whole trial again to learn. I think my next few posts I'll try and share some of these 'lessons' that I'm talking about. I only hope that I can put them in to words!

Hope you all have a great weekend!

I really like this quote that my dad shared with me,

“… the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.

If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens—even if some days it doesn’t seem so. Jesus said, “I am come that they might have life, and that they might have it more abundantly.” Enjoy those blessings right now. They are yours and always will be.”

What a great reminder to me on my ‘down’ days to look around and smell the roses. One thing that I’ve come to realize in this short time is that we all have experiences in our lives that test us, some seem greater to those on the outside, but to the person in the midst of it all it’s a struggle/big deal. We have to remember this as we look on others during these difficult times and try our best not to judge their course of action or attitude etc because really they are probably trying their very best.


There really isn’t much reporting or updating to do, but it’s very early in the morning and I’ve thrown in the towel on trying to stay asleep in bed for the night. Blogging seemed like something I could do to pass the time. Any closet insomniacs who have some good advice for staying asleep without using drugs?


I don’t think I’ve adequately thanked Justin for all that he does for me. Not but 5 minutes ago I was crouched over the toilet, trying my best not to wake him up, but he came running in with a bottle of water for me just woken from his deep sleep. He’s also got a special way about him of kicking me in the pants to keep my attitude on track when it starts to veer one way or the other through this experience. I guess this is one of the many positive things that spouses are good for. : ) I can’t imagine how different of an experience I’d be having if this diagnosis had come about 7 months earlier. Happy 7 month anniversary to us!!






In the last post I wrote about trying to get into Mayo Scottsdale. Well we had our appointment with the oncologist, who seemed very good. However after a little more exploration we have decided not to pursue treatment there because our insurances are not accepted. So we will most likely use another oncologist here in the valley to administer the chemo regiment that was outlined for me at Mayo Rochester. And from there we will just play it by ear to see what will happen with surgery, follow up visits to Mayo etc. I have an appointment with a highly recommended oncologist here on Tuesday, and we hope to resume my next chemo cycle starting Wednesday.


As always, thank you all for your support and prayers!

Home from Mayo

My parents and I were able to make it back to AZ from MN on Saturday evening. We were a few days later returning home because we had a small bump early on Thursday morning when we were scheduled to come.

A little backtracking...I was told by the nurse in the cancer wing when I was receiving chemo last week that I’m not ‘ordinary’ anymore. What she meant by this was that if I had any infection like symptoms or extended periods of vomiting, the runs etc that I needed to not be shy about making my way to the ER to receive treatment. My body won’t just ‘get over’ things like it has in the past. So we’ve been on a slightly elevated Susan Security Alert (now at level ‘orange’).

We were scheduled to have the pump administering the rest of the chemo removed on Thursday afternoon, and then we’d rush to the airport to make our 5:30 flight home to Arizona. On Thursday morning I woke up at about 4:00am with some pain in my side in the same place like I’d had before, only I couldn’t get comfortable, and I had just had a pain pill. After a few minutes debating whether to wake up my parents, I did and the debate ensued on whether or not this pain was warranting a dreaded trip to the ER. After ½ or so longer of no relief, the decision was made to head in. Luckily for us, the hospital was right across the street, and there was absolutely no wait for me to get in, be seen and get on some stronger pain medication.

A battery of tests were re-ordered, CAT Scan, Chest X-Ray, blood work to rule out that I was having any major complications with my tumor, liver or anything related like we’d been warned about; blood clots these types of things. After initial tests came back negative for any of this I was admitted and transferred over to the larger hospital connected with Mayo where they wanted to keep an eye on me and the pain. My first ride in an ambulance...I wasn’t nearly as coherent as I’d always hoped I would be though L

The doctors in the ER room told my parents that there was a good chance that the pain I was experiencing was actually a ‘good’ thing in that it may be a sign that the chemo was working and doing its job on my liver tumors! Awesome news all though not fun at the moment...

To make the long version of the story short I ended up having to stay in the hospital until Saturday afternoon, so we had obviously missed our scheduled flight home on Thursday. As if this couldn’t get more creative...and she may not like me for telling everyone this...my mom had a flare up of a recurring problem she’s had related to diet and had to be admitted to the ER on Friday evening. Luckily she caught it all in time and had only a short stay, some pain and antibiotic medications prescribed and was able to lay low and rest for Saturday morning while I was being discharged. I have to include it in the update though, because it just shows on a very very very small scale the sacrifices my parents made for me being on this trip. My mom was putting her own well being aside and had this happen, so for Friday night my dad was bouncing back and forth between the hospitals caring for the two women in his life :)

The doctors advised me on discharge to wait a day before trying to fly home, but I was feeling good and didn’t want to risk getting stuck any longer than we had to. So we made the call to jump on a flight home Friday at about 6:00pm. I couldn’t wait to get home and see Justin.

We were quite the sight to be seen traveling through the airport, my dad and his two women in wheelchairs :) The flight was mostly uneventful and we were home!!

A quick update on other happenings...I’m very pleased with how I feel on the chemo. It’s had it’s ups and downs, but ultimately I feel blessed that so far the side effects are minimal for me. This will probably change over the next cycles, so I’m enjoying it now, but I’m mostly just very tired and fatigued. I KNOW that these minimal side effects are due to all your prayers, so thank you all once again!!

We have an appointment with an oncologist at Mayo Scottsdale on August 1st. This week we will be looking into insurance options, if I haven’t already mentioned it Rochester Mayo is a preferred provider on my plan, but Scottsdale is not. Chemo is not cheap obviously, so we’ll be seeing what options are available for future treatments. I’m tentatively scheduled right now to head back to Mayo on the 5th for my second cycle in MN.

Can you believe how far we’ve already come in just 2 weeks time? It’s been a rollercoaster at parts, but I really just feel so blessed by all that has seemed to fall into place, and how smoothly it’s been going over all. I know that God is responsible for this, and I thank you all for your prayers and the asking of blessings for us. Know that it is doing good.

Have a great week!