Monday, July 28, 2008
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!
Wednesday, July 23, 2008
The port-a-cath surgery was mostly uneventful. I did get a little sick from the anesthesia medicine and that lasted through yesterday morning. It was no surprise that the incision was sore, but otherwise just fine! I so appreciated the extra encouragement and insight from people who have or currently have a port-a-cath. It eased my mind!!
The chemo has also been mostly uneventful as well (so far knock on wood!). Yesterday I was given 4 drugs over the course of about 4 hours at the hospital, and now I have a little portable pump that administers the final drug, 2.2ml an hour, so I'll be done with it tomorrow afternoon about 3 o'clock or so. My appetite is a little lacking, but other than that if all continues this well we will be on our way home this time tomorrow!!
I have been falling behind responding to letters and emails, but please know that I have received them, and I so appreciate the personal stories, advice and support. Thank you to all for helping keep my spirits up, and for the prayers I'm sure it's why the past two days have gone as smoothly as they have!
Saturday, July 19, 2008
Thursday, July 17, 2008
I've been in only a few hospitals, but right off the bat coming here you notice that it is exceptionally clean and well run. It feels like more of an office building that a hospital. My parents, Justin and I were trying to decide if this was because the buildings we were in were newer, or they really just keep it that immaculate.
When I checked in I was given a printed out itinerary of tests that had been scheduled for me as well as consultations. After filling out all the necessary paperwork I was given a pager that would go off when it was my turn to meet with the physician’s assistant. If you can imagine a very large room with tons of seating, every 50 feet or so was a double door marked with a letter. You would hear a pager go off simultaneously while a nurse or other worker would appear at one of these doors so you would know where to go. The process was so impressive!
After reviewing my itinerary we noticed that I was scheduled to have many of the same tests and procedures done over the next few days that I had already done back in AZ. We met first with Mr. Roger Thompson, the PA, who had reviewed all my information that was brought and he determined that my doctors in AZ had done an excellent job documenting the colonoscopy for example, and that there was no need for me to have another one while I was here at Mayo. The same for a CT scan. Mayo wanted to do their own blood work, chest x-ray, ECG and PET Scan as well as review the actual biopsy slides that were taken during my colonoscopy at home. Not having to do another colonoscopy (or the preparation for it rather) was something to be thankful for...it's a given that I'm going to be getting them at regular intervals in the future, but I was jumping for joy inside that I didn't have to do it again quite yet!
Before heading off to do those tests, we were able to meet with Dr. Lisa Boardman, a specialist in gastrointestinal malignancies. If I decide to be treated here at Mayo, Dr. Boardman would be assigned to be the Physician over my case. She along with Mr. Thompson, a surgeon and an oncologist would be my 'team of doctors'. We had a nice meeting with her where she answered all the questions we had prepared. My brother, Zach, found this article about Dr. Boardman's research in early onset of colon cancer in people younger than 50. Needless to say we feel very good about the possibility of having someone who has a particular interest in cases like mine oversee my care.
On an interesting side note, I was asked to participate in the study mentioned in this article by providing a blood, stool, and during the time of my surgery a sample of my colon/tumor. I'll also fill out surveys about my eating habits and some other variables they are researching to see if there is a correlation to early onset of colon cancer.
After this meeting with Dr. Boardman it was off to have my blood drawn, chest x-rayed and a quick ECG test of my heart. The blood test was for the research study, to examine my genetic markers, and try to determine if because the tumor is bleeding it needed to be removed before starting chemo. The chest x-ray was to again rule out that any cancer has spread to my heart and lungs and look for any indicators my heart is not healthy enough for surgery. Same with the ECG which is a heart test. I couldn't believe how quickly and efficiently they moved through these tests...being that part of what MediServe (the company I work for) does is automate hospital departments to help them run at optimal efficiency, I was very impressed.
Later in the afternoon we met with a colorectal surgeon, Dr. Devine for a surgical consultation. In my meeting with Dr. Boardman she made it clear that depending on what the genetic tests find, they may advise me to remove my entire large intestines to avoid future tumors, this in turn would decrease the likelihood of the cancer spreading to other organs like it already has. This was not really something that I wanted to hear, but it is also not a decision that needs to be made right away, so I'm not going to dwell on it at the moment. She assured me that even if this happens I'll be able to be as active as I was pre-cancer, which has been a concern of mine. The surgeon agreed with Dr. Boardman that Chemotherapy should be pursued before surgery to try as quickly as possible to stop the growths affecting my liver. Because there are not only one or two tumors on my liver they believed radiation was not going to be necessary and that our best shot at getting rid of them was chemo.
On Friday we hope to get a PET Scan, and we will talk with an Oncologist, which is the meeting I'm looking forward to the most...we have more questions for him. The surgeon was great about answering our questions, but it's really very black and white...we don't have a lot of options to consider or decisions to make, regardless of where I go. The strategy of the oncologist on the other hand could vary to some degree.
There was lots to internalize after the first day of meetings yesterday. Overall I really liked all of the people we met with and that would be working with me here, the facility and all the people have been great. Justin and my parents felt the same.
We'll also find out tomorrow how quickly Mayo would be able to get me started on Chemo. We may not have much of a decision to make if we don't hear back from the other facilities we were considering, and Mayo could get started right away. They have gone out of their way to make appointments for us with the surgeon, and oncologist tomorrow, and we really feel like this is a blessing.
On a lighter note...we ate at the "Canadian Honker" restaurant for dinner.... I haven't felt too nauseous through this whole thing, but yesterday was some exception for whatever reason. I tried really hard to finish the soup I had ordered, but all hope was lost when I overheard the waiter say, "Liver and Onions" as she put this plate in front of a lady across from me. I had to excuse myself and sit outside while the others finished their food. I let my imagination get the best of me!!
Thanks again to everyone for your words of encouragement and prayers. I will try to write an update after our meeting tomorrow!
Tuesday, July 15, 2008
My brother Zach sent this funny song....it made Justin and I laugh, and we will probably be humming it for the next few months :)
I haven't quite figured out how to post the video to the page directly...
Monday, July 14, 2008
I know those who may be readying this that are not LDS know that fasting means to go a period without food/water, but I thought I'd briefly explain why we do it as members of our church. Fasting and Prayer often go together, and are usually done to exercise our faith and draw us closer to God so that we can be more receptive to receiving answers to prayers and blessings we ask for. Fasting is to be done with a specific 'purpose' in mind. Yesterday our families decided to fast and I am now learning that there were dozens of friends who also joined, and I know that Justin and I are blessed by their exercise of faith for us. Again thank you all!
Today we began the process of narrowing down possible Surgeons, Oncologists or facilities in general. We had a separate appointment scheduled with a local surgeon and oncologist here tomorrow and while we have not ruled them out, we've decided that we feel better about me being treated at a facility where the two work together with a team of other physicians to determine an individualized care plan. Here is our short list that we've compiled based on personal referrals from friends, family and physicians (in random order):
Mayo Clinic, AZ
Mayo Clinic, MN
MD Anderson Cancer Center, TX
Memorial Sloan-Kettering, NY
Dana-Farber Cancer Center, MA
It can be a long process being accepted to even meet for a consultation appointment at several of these facilities. Before we even got the pathology report back on Thursday last week that my tumor was indeed malignant, we had started the process to get into Mayo, AZ. We will hear back from them at the earliest on Wednesday.
We're very excited because today we already heard back from Mayo MN, and they had an opening for a consultation appointment this Wednesday with their GI team! So we're headed to Rochester Tuesday afternoon, and consequently had to cancel our appointments with the oncologist and surgeon here. Both were highly recommended to us, but work out of separate facilities, and as mentioned before we feel better about working with a pre-established team. We have started the new patient application process at the other facilities on this list and now it is a waiting game as they review my case and information. If they think I am a good candidate for their program they will contact me about an appointment. I feel like I'm a free agent waiting to be picked up by a new team :)
We won't necessarily visit each of these places. We will just wait this week to see what pans out. At a couple we found out the wait time for new appointments is 4 weeks or more, and after receiving the results of the CT Scan last week with the 'liver involvement' we don't really feel inclined to wait too long. It's no wonder there is a wait time like this, did you know that the American Cancer Society estimates over 1,400,000 new cases of cancer this year? Thats on top of the millions of people currently seeking treatment!
Our short term goal here is to get the chance to talk with as many of these facilities this week as possible and narrow down the list to 2, maybe 3 that we feel really good about and then make a decision. Its important to note that once you've begun treatment at a facility its very difficult to move to a new one (I'm guessing expensive too)....so making the best decision the first time is key!
I think that's most of the news for today....well let me re-phrase, I think that's all the detail I'll go into today :) There really is so much that I could write about but I'm trying to keep the information relevant and not go off on tangents! I'll say one last thing, Greg prescribed me some pain medication that has made me much more comfortable (and goofy) so I've been able to sleep in a bed (not the recliner), and eat more...in turn I've got more energy!
Thank you all again for your prayers and fasting!
Saturday, July 12, 2008
Well... I’ve already taken the liberty of changing our blog’s URL, it was a pleasant surprise that this was even possible!
In my first post below from a few weeks ago when we actually stated this blog, I mentioned that Justin and I were going to need to be very creative finding things to blog about...for the next little while I think we’ll have a good portion of our subject matter taken care of...careful what you wish for! :)
I’m going to try and keep this blog up to date not only for family and friends, but I will admit my intentions are mostly to keep a record of my own thoughts and feelings, as well as Justin’s.
This all started back towards the end of April when I had some pain in my abdomen that was very similar to a bout of acid reflux I had back in college. At that time the doctor prescribed me some antacids and the pain went away within a matter of days, and as long as I was careful not to lay down after I ate I hadn’t had any problems since. This new pain seemed to be the same thing and after Tums, Pepto and other over the counter medicines didn’t help the pain I decided to see my family practice doctor. He agreed that it sounded like acid reflux or something of the sort, and gave me some PrevAcid samples to try. After only a few days the pain had gone away, only occasionally to pop up, but quickly solved by taking the PrevAcid.
Fast forward to the end of June when Justin and I were with my family on vacation in
We returned from CA on Monday, the next morning I was meeting my friend Stacey at the MCC track to run, but the pain in my abdomen was bothering me so much I couldn’t even jog...so we walked around the track and bleachers instead that morning. When I got back home I had my normal shake for breakfast, and proceeded to get ready for work. I had an unpleasant surprise in the toilet, but before I rushed to the doctor in a frenzy I decided to wait a few more ‘deposits’ to see if what I had seen was indeed what I thought it was. I used the “Nurse on Call” benefit through my insurance company to confirm that I was not over reacting and should indeed make an appointment with my doctor. The nurse that I spoke with was very concerned and would not hang up with me until I promised her that I would go see the doctor that day. I was able to make an appointment for that afternoon.
Greg is one of my new brothers in law and is now my doctor as well. He referred me to a GI specialist and told me that I had most likely just won myself a ticket to get a colonoscopy as well as an endoscopy to determine the source of my bleeding. He ordered a few more lab tests, made an appointment for me with the GI doctor on Thursday and gave me some new antacids to try thinking that I most likely had an ulcer.
The pain in my abdomen was bad enough that I didn’t feel up to going into work for the rest of the day, so I curled up on a ball and slept until Justin got home that evening. The next morning, Wednesday, the pain seemed to have gotten slightly worse, and it was really uncomfortable for me to be standing or even sitting, so in the fetal position I remained for the entire day. Justin and I had plans to leave the next day to go White Water Rafting with some friends over the long weekend in
The doctor appointment couldn’t have come soon enough; I wanted to find out wait this pain was and get rid of it! I met with Dr. Walker, who was very nice, and I thought very thorough. He examined me on the spot to rule out that hemorrhoids were the cause of my bleeding, and they were not. Pushing around on my stomach his thought was the same as Greg’s that I actually was by strange coincidence having symptoms of two separate problems, most likely an ulcer in my stomach, and colitis in my intestines, which is a fancy word for an infection. This is what he hypothesized was the source of my bleeding. He wanted to do an endoscopy as well as a colonoscopy while we were at it just to check out the infection there. With the long weekend coming up I would have to wait until the next week to schedule, and he was also going to be out of town, so I had the option of waiting for him to return and doing the procedure in two or three weeks or he would check one of the other Dr.’s schedules and see if they could get me in sooner. He told me that “I would probably have to be admitted to the hospital if I waited for him to get back,” so I opted to let his colleague scope me.
Having to wait those six days was rough, but I was even more discouraged when I woke up on Wednesday morning for the procedure and my pain was virtually gone! If you’ve never had a colonoscopy, or known someone that has, the 24 hours before your procedure you have only clear liquids, and then you have to drink the most awful solution that will completely clear out your insides. My mom volunteered to take me to the procedure since a driver is needed, so that Justin wouldn’t need to take time off of work. Dr. Collins would be the physician doing both procedures. Before they started to put me under he and I chatted. I told him about the pain having mostly gone, and he reiterated that he also believed he would find an ulcer.
I only remember a small portion of the meeting with the Dr Collins when I was coming out of the sedation, so the following is mostly what my mom relayed to me after the fact. The endoscopy (esophagus and stomach) appeared to be fine. There was no evidence of any ulcers or cause for me to be in pain. My colon however, in the words of the doctor, “was a mess...” He explained that he had found a “hemorrhagic, ulcerated mass in the hepatic flexure of my colon” (bloody and hard), and in his opinion it appeared to be cancerous. You can see where the Hepatic Flexure is to the left in the picture to the right, but this is on my right side. The results from the biopsy he took would either confirm or refute this. He put a rush on the pathology results and instead of waiting the normal 5 – 10 days we would have an answer the next day. He said over and over that what he found had completely taken him by surprise, you don't see colon cancer in someone my age.
Justin, my mom and my dad all accompanied me to the appointment on Thursday where the doctor read off the results from pathology. I also had several polyps, some of which he removed. He started with the good news that all but two of those tested positive for precancerous cells, and then confirmed what we were all hoping wouldn’t be true that the large tumor was cancerous.
-Diets low in fruits and vegetables
-Diets high in red or processed meats
-Heavy Alcohol Use
-90% of colon cancer patients are over the age of 50
It was not more than 2 months ago I was on my nutrition soap box at work preaching to a couple of my colleagues about the importance of eating plenty of fruits and veggies so they could keep their colons healthy...I guess my credibility is shot now? :)
Next items of business are having a CT scan to determine if the cancer had spread outside of my colon, to any other organs, lymph nodes etc. I also need to have more blood work done to try and nail down the origin of the cancer...is it genetic, a mutation etc etc. Then we would need to start meeting with surgeons, and depending on the results of the CT scan and other X-Rays an Oncologist if chemo or radiation therapy was needed.
Today I had my CT scan and I must say that is something that everyone should experience at least once in their lifetime...it gives you the feeling that you’re going to spontaneously combust at any second among other sensations! The results of the scan were not as positive as we’d had hoped. Again, I’m so thankful for the doctors, they have been expediting all of the normal wait times so we are not left on edge waiting for results. We were hoping that the cancer was contained inside my colon as this would most likely mean that a portion could be removed and that no chemo or radiation would be needed, however the scan showed that had perforated to the outside, and that there is “involvement of the liver” as well. My doctor did not have the results in front of him when he phoned, so what “liver involvement” means exactly I won’t find out until I meet with the surgeon on Tuesday.
Colon Cancer is characterized by its severity using "Stages" 0 - 4. Zero being the least and 4 being the most advanced. Here is a diagram that illustrates the criteria for each stage.
Full staging will not take place until I have an actual surgery...however it doesn't take a doctor to see that because of the growth outside the colon wall and 'liver involvement' I'm either stage 3 or 4. I've never been one to back down from a challenge, but I would have been happy with 1 or 2 in this situation!!
Writing this out has been very therapeutic. Obviously this doesn’t have many of my own internal thoughts, it's mostly just the happenings of the last two days. I have been thinking plenty.... I still haven’t wrapped my mind around the situation yet, and I probably won’t until we get further into treatment discussions etc. When I arrived at the imaging center for the CT Scan today, it was my first time having to verbalize to a stranger what my situation was. Normally when I fill out medical background forms I skip right through the “past diagnosis, conditions” and so forth. Today I had to stop on the line that says “Cancer” and admit to myself that this is real. That is a hard thing to do because aside from the pain that is back, and not having my regular appetite, I feel like regular old Susan. If I had a little more energy I’d like to go for a run after this test, or get back to planning my next trip abroad! That’s all on hold right now...maybe I’ll feel different when I’m missing half of my large intestines? I don’t think I ever even noticed it there in the first place...hopefully I won’t even tell a difference. :)
While I was getting my chest x-ray today the tech asked me,
“So what are you in for today?”
I choked up a bit when I said, “I was just diagnosed with colon cancer and we need to see if it has spread...”
“I’m sorry.” Was her reply followed by a very sincere remark,
“You’re way too young.”
All I could do was shrug and try to hold in the tears.
Tonight as Justin and I were eating dinner, it was the first chance we’ve really had to sit and talk about our feelings and what we are going to do. Naturally the conversation turned to “Why?” After about 30 seconds we decided it was a pointless conversation to continue. My answer is that it doesn’t really matter, and I’ll drive myself crazy in the meantime trying to figure it out. Yes, I don’t meet any of the known risk factors, and I’m only 25, but for whatever reason this is mine to own now. It may sound crazy to say this, but I really do feel blessed by so many of the events over the last few months, and I know that Justin and I and our families will continue to be blessed through whatever course this takes us. In future posts I'll try to share some of these that aren't too personal.
I’ve thought back over the years of people I have known who have overcome cancer, as well as some who fought the good fight and didn’t make it. They were inspirations to me before, but their stories have a whole new meaning to me now. I really don’t have to look very far to find people who have had to deal with cancer, or any other horrible diagnosis for that matter. No one is really ‘safe’ and in an odd way that makes it easier to wrap my mind around what is happening. By the way, I'd love for you to share any stories of family or friends that you have who have had cancer, and any insights you'd like to share with me on how to stay positive, homework to do, foods to eat etc etc.
Thank you all for your messages of love and support. I am so lucky to be surrounded by two loving families and a host of friends that I know care deeply about me. We'll come out on top of this, I promise :)