Melissa Rieke Photography
My Cancer Journey
Not the Year I had Expected ~ Stage IIIa Colon Cancer at 35
FYI…this is long…you may want to grab a cup of tea and a snack! 🙂
To say that 2014 didn’t go as planned may be an understatement. Let’s be honest though….very few years go as planned right? There is always something that is a little wonky, or surprising, or not quite right. My year started out with a bang! We ended 2013 with an amazing family trip to Disney World…and when I say family trip…I mean about 40 of us…so much fun and such great memories. I had started working out in the fall of 2013…and really put it in high gear with my health and fitness in January. Ernie (my husband) and I started the Advocare 24 Day Challenge and I continued working out at the local gym, Free State Fitness…doing their SHRED program. My awesome trainer had given me my life back by strengthening my back (and the rest of me)…I was in the better shape than I had been even playing college Volleyball I believe. For the first time in I couldn’t remember when, I wasn’t in constant back pain.
Because of getting stronger I was able to stop my constant need for Advil to get thru my days with my back. I had also been dealing with some, lets call it, abdominal pain…which I thought was a result of having my tubes tied in the fall of 2012. The pain started then and I just assumed it was healing and didn’t mention it at my yearly appointment in March of 2013. When March 2014 rolled around the pain was either more persistent…or I noticed it more because I wasn’t masking it with Advil for my back. The pain was minor compared to my back pain so it didn’t slow me down much. It would be pretty intense a couple times a month and typically in the mornings for a bit. I chalked it up to “girl” problems. I do now remember it stopping me from my workouts for a few minutes…but it always subsided and I went on my way. In March my OB couldn’t recreate the pain while I was in the office so there wasn’t much to be done…but when I left that day I spent the rest of the day and the next with a heating pad on my belly. I called back and we scheduled a sonogram to see if we could figure it out. Being the doctor that I am (not)…I really thought it was the clamp from my tubal that was rubbing on something. I went in for the sono and nothing was found. At that time I mentioned to my doctor that I had some slight bleeding in my stools. When I say slight…I mean…MINOR. Barely pink…just a tad on the paper…never more than that. She sent me in for a colonoscopy.
Boo. I was not thrilled about this procedure. I really thought she wasn’t listening…and that it had to do with my prior surgery (tubal). I didn’t have time for this…a whole day fasting…then a night of toilet time…then a day off work because I would be sedated. Errr. But I complied and went along with it. It was May 8th at 10 in the morning I believe. I had my mom take me in…Ernie and I had both been so busy with work and I didn’t want to bother him for a simple procedure that was no big deal. Looking back I am not sure what the right thing to do would have been. I felt horrible that my mom had to be there…but I would have felt horrible if Ernie was there too. So pretty much…they get you all ready to go…wheel you back…you meet everyone in the procedure room for about oh say 10 seconds…then BAM…you are in the recovery area waking up…its that easy. I should have known when they had us wait in the private room that the news was not great…but this being my first time and all…I just thought it was normal. Honestly…I don’t think I really soaked in what he was saying until he actually used the word CANCER. He told us that there was a mass…I thought ok…big deal…(remember I was just coming off of some pretty sweet sleepy drugs)….he told us we would need to consult with some other doctors…he told us that it would have to be removed (I thought eeks…that kinda sucks but no big deal)…then he said, “It is most likely Cancer…it could be (something I forget what) but he has never seen this NOT be Cancer”. OK…I am awake now.
So if you haven’t met my mom…she is pretty much the strongest woman on earth. No really…she is physically strong, mentally strong, emotionally strong…and she doesn’t let me get away with being weak. So we both sucked it up…she tried to ask some questions…I was pretty much stuck with nothing to say…and we left. I couldn’t dare call Ernie on the phone and tell him so we arranged to meet him at his office. I hated pulling away that day and leaving him alone…who wants to get that information and have to keep working. I really think at that point both Ernie and my Mom believed that the biopsy would come back negative. I knew that wasn’t the case.
Now I only typically mow once…maybe twice a year. My allergies get terrible and Ernie is pretty particular about his grass! That Saturday I got on the mower and didn’t get off for 4 hours…yes…we have a lot of yard to mow! I think mowing could be one of the most therapeutic things out there…not so much for my back…but my mind! I cried…I laughed…I cried. Songs would come on my iPad and I would just tear up…I was thinking about my girls…who would teach them to sit like ladies…to put on makeup…to create their own style…to have choose the right boy. I was thinking of my Gus man…who would show him that girls were ok…that he would need to learn to take care of himself so he could take care of his wife someday…who would show him that there are other jeans besides Wranglers…that kindness, generosity, gratitude will get him much further than being cool. What would Ernie do without me…ha…that sounds terrible…but really how do you take care of three small children on your own? Who would help him? Would he let them? (I say that knowing we have a ton of family and friends and they all would have survived but everything goes thru your head). I thought of what songs they would play at my funeral…if Ernie would follow my wishes and have a closed casket. By the way I think it would be great if that casket was shabby chic turquoise! What videos did I need to make for everyone…for when the kids got their first girlfriend or boyfriend…how to put on makeup…how to deal with mean girls…their graduations…their weddings. By the end of that 4 hour marathon mowing session…I had convinced myself I was going to be fine…that I got all worked up and silly over nothing…I was strong…I would make it thru…and that was that.
I share all those awful things…as hard as it is to write…I share because I don’t want to sugar coat it…I don’t want it to seem like butterflies and rainbows…but I also know that it wasn’t and couldn’t be all gloomy and awful, that is just not me.
I got the call the following Tuesday, May 13th, 2014…that it is Cancer. I had a session that morning with some of my favorite little clients. Then I met my mom for some shopping and lunch, trying to fill my day and be with someone while we waited on the call. Of course the call came after we had gone our separate ways…and I was in JCPenny’s of all places. So I answered the call…got out my note pad and sat in the JCP dressing room trying to capture all the information I needed. Then I calmly paid for my things, went out to my car and called Ernie. Maybe I shouldn’t have just blurted it out (that day wasn’t the greatest for me just doing that). Then I spent about 20 minutes, calling my sweet cousin to get some doctor recommendations (its handy having a family member that works at the hospital and knows all the docs), then I called and made appointments with those docs…ran over to Target to go to the bathroom…then back to the car and called Ernie back. I was numb…I didn’t cry…I didn’t laugh…I was almost hyper for some crazy reason. Like I said the MOW had helped me a lot…so I was in GO MODE at this point. What do we need to do lets do it. That evening was full of ball practice…I knew most of my friends would be at the fields and I knew I couldn’t hide it from them. A few of them knew that I was waiting on news…a couple knew nothing. Once I finally got the kids off to practice and play…I shared my news. (we didn’t tell the kids till later that evening). When I say I shared the news…I said “So…I have cancer”. Yep…just like that. I am just not sure how you are suppose to deliver that news much softer. Sorry friends…I know that was a sucky day…wish I could have had a better way of sharing.
It hurts the most to see the saddness in other peoples eyes. To know that your family and friends are going to be upset. That was the hardest for me at first. That and accepting help! (because I wasn’t sick or so I told myself). Telling the kids that evening was one of the hardest things we have ever had to do. They haven’t had much experience with Cancer…but knew the word…and knew it wasn’t good. They were scared because we were scared…and that night taught me a lot. They would feed of of us…off of me. If I was down…they were down…so mommy needed to be strong…be positive…and get us all thru this. Daddy kept the ship rolling for us…he was our rock.
After several appointments, scans, scopes, and finding out lots of information…we had a plan. My surgeon Dr. Lina O’brien with Colorectal Surgical Associates of KC was wonderful, we really liked her a lot and felt very confident. She determined that the mass was in my Sigmoid Colon and luckily was close but not in my rectum (which is a much worse case scenario). Here is a picture of your sigmoid colon (yeah…I had pretty much no clue either). So the sigmoid is east and west section at the bottom. There was really know way of telling how far along or what stage of cancer I was at until I had it removed and they got in there to see. I did have pretty good outlook because all my other scans came back clean except for one small bleep on my PET scan.
So we scheduled surgery to remove the mass for May 27th, the day after Memorial Day. The weeks leading up to the surgery were a whirl wind. I tried to fit in as many clients as possible because I was told I would be off work for 4-6 weeks. Of course I believe that would only be 2 weeks (I was way wrong)…but I still had to plan. My world was spinning. This was the time I was gearing up for crazy wedding season…during that 6 weeks…we had 7 weddings to shoot…I had newborns due to be born…and mini sessions…and regular sessions. It was a business owners nightmare. Luckily for me I have the greatest business partner in the world Beth Hodge over at Melissa & Beth she took on all those weddings without missing a beat…she gave me peace and helped me see that all would be ok. In fact she has done so much for me this year I don’t know how to ever repay her…yep…pretty amazing! I was also trying to fit in field trips, school field days, date days with each of my kiddos, and trying to keep things as normal as possible. The weekend before surgery we had two weddings…one of the weddings was my “faux” little sis. I was a bridesmaid and was so grateful that I was able to be there, be apart of her special day…and just witness how much she shinned! It was a glorious day. The next day we had another fabulous wedding to shoot as well. Like I said before…Beth is pretty amazing…and after shooting two weddings in a row…and a few other sessions in between so was gracious enough to run to the studio Monday morning (holiday weekend as well) and grab a couple shots of me and my family. I do this everyday…capture memories for people…but it isn’t very often I am in front of the camera with my family. DO IT PEOPLE…no matter what you look like, if your hair isn’t right, your weight, not clothes…take pictures with your family…do it for THEM! I am so blessed and grateful to have these images. I knew I was going to be fine…but I wanted these pictures for them…so they could have them to hold on to and look at!
Tuesday, May 27th came…
So surgery went great…they were able to remove all of the mass…plus about 13″ of colon…including a tad bit of rectum…and 35 lymphnodes. Dr. O’brien told my family that they didn’t know the stage yet…but that I would be doing chemo. I had been hoping for just he surgery. It was what I had prepare for. Outloud I said…”Oh, if it is stage 2…I’ll still do the chemo just to be safe”…but I was just kidding! I was just trying to act all strong! “FAKE IT TILL YOU MAKE IT”. It was about 2 days and we got the news back that it was Stage 3a. I like to call it a “GOOD 3a”…not sure that is a thing but hey, whatever works. They had found 1 out of the 35 lymphnodes was positive. The mass had grown into the colon wall but not thru it. So things could have gone much worse. We had to wait 3 LOOOONG weeks after surgery to meet with the oncologist again and get a plan of action for the next phase of this cancer business. At this point I still wasn’t SICK. I was going to be fine. My friends set up a meal train for us, I fought it at first but what a lifesaver it became. Surgery was tough…I was in a lot of pain and couldn’t do a lot. I had a 4 day stay in the hospital and came home on a saturday. I couldn’t even shower myself…blessed my sister in a law is a nurse and we will just assume she had to shower people before….not so sure she feels quite as blessed…ha! Ernie brought in one of our patio chairs for me to use in the shower at home. It was exhausting. But Monday and every day after that I was at the ball field cheering my kiddos on. I had to miss 3 games the week of surgery and I didn’t want to miss any more. (Yes we had ball games every night of the week except weekends…I call it parents social hour..he he he). I had to nap everyday for several hours I simply had no energy. I lost some weight and a LOT of muscle….boo. I was so weak. After 2 weeks I could FINALLY drive…FREEDOM.
The time had finally come to see the Oncologist again. Dr. Prasanth Reddy at the Shawnee Mission Cancer Center. We had met with Dr. Reddy two times prior to this. Once when we first found out (before we had met with the surgeon) and once after I had my PET Scan and CT Scans. We liked Dr. Reddy a lot…he was very thorough and explained everything so that we could understand it. We tried to ask questions…but he usually had everything covered. I have to say when we met with Dr. Reddy the 3rd time I wasn’t ready for his news. Up to this point (besides the day we found the mass) I had been prepared for it all. I was prepared for it to be cancer…I knew I had to have it removed…I was prepared to be out for several weeks after surgery…what I wasn’t prepared for was the length of treatments and how many. I had in my head that this whole journey would be over by September. August really. That I would get thru the summer with a small speed bump and be back at it ready for busy fall season. Nope…not the case. Dr. Reddy told us that standard of care treatment was needed. That we would need to do 12…12…12 round of chemo. Wow…that hit me like a brick. I think I may have tuned out after that. Good thing Ernie and my mom came to my appointments to take notes and ask the questions I couldn’t think of.
I would be taking treatments every other week. One week on, one week off. I was going to be taking three drugs…Fluorouracil or as I like to call it 5FU (take a guess as why I like the FU part) this drug I got hooked up to on pump day…and wore home for 46 hours..I have a picture of me with my “cute” pump bag below, these other two drugs I had pumped at the treatment center..it took about 3 hours. Leucovorin, Oxaliplatin, this one was and is not my friend. Here is a little feature of the special side effect “This drug may change the sensation in your mouth, tongue, throat, eyes, hands or feet, causing pain, numbness, tingling, or burning. The problem usually goes away within 2 weeks of treatment but is made worse by cold. Avoid being exposed to cold for 5 days after each dose of oxaliplatin. Drink warm liquids; no ice, cold drinks, frozen desserts, or ice packs. Use gloves if you need to touch anything cold or reach into the freezer. If it is cold outside, dress warmly and cover exposed skin, don’t touch metal objects with bare hands, and have your car heated before getting in. Avoid ice or ice packs. If it’s warm out, don’t set air conditioners at very low temperatures.” This was crazy true…and got worse each time…the first round the cold didn’t hit till the next day. It felt like frostbite on my fingers if I touched something cold…and strepthroat if I drank something cold. Let’s talk about something cold…EVERYTHING is cold…door handles in your house..dishes, shower floors, hair brushes, EVERYTHING. It took some getting used to…but I figured it out. Well…that was in the SUMMER TIME. (the no cold drinks was not cool then). THEN the winter hit…and gloves were my best friend. Once I got locked outside the church for a bit (it was after regular church hours and once you go out you can’t go back in…well Ernie and the keys to the car were IN)…and I literally thought my nose was going to flake off in little ice piles. I kept asking if I had something on my nose..it felt like I had glued on a tissue and it was cracking off. Crazy. For the most part this side effect would go away after about 7 days. (or almost go away).
Another side effect of the Oxaliplatin is peripheral neuropathy. We monitored this very closely…and it didn’t really start until the last few rounds of chemo. This can cause numbness, weakness, pain, burning, or tingling, (usually in the hands or feet), and sometimes constipation. These symptoms can sometimes worsen to include trouble walking or holding things in your hands. Yay..oh what fun it is!
So we were all set…I had surgery to insert a port cath on July 3rd. (I like to call it my 3rd boob…pretty sure it stuck out just as far…not that that is very far!) This is what it looks like.
On Monday July 7th we started Treatments…The staff at Shawnee Mission Cancer center is so friendly and kind. From day one I felt so comfortable there. The lovely ladies at the front desk would always greet me with a smile and made me feel like I was the most important patient coming in that day and every time I was there. They made everyone feel like this. The nurses in the back were caring and kind and gentle. They would laugh with me…they would talk me out of shaving my head…they would encourage me…just amazing people. I can’t say enough about all of the staff…I will miss them all. (but as they said…they would rather see me at the grocery store..he he he).
Chemo Day 1…Thats me with that big cheesy grin on my face…”Fake it Till You Make It”. My dad always taught me to laugh..to laugh at myself…to not let things get to me…to be strong and push thru. Good lessons! And that handsome fella right there is my Ernie…smiling right along with me. He was cracking me up that day…he spoke with his grandpa when we were walking out and said…”yeah…she still has her hair…we thought it might start popping out like springs but it didn’t…and she didn’t turn green either!” he he he. Such a jokester.
So this is that cool bag I was telling you about above. The first few rounds I was able to go eat lunch after treatment before I went home. In fact..this first round I went to the ball field and watched the last of the kids games while I was still hooked up. The first time only…the next rounds I pretty much didn’t leave the house those days. I would put the pump bag in a cute Stella & Dot bag or Matilda Jane bag to hide it…throw on a scarf…and pretty much no one could tell I was hooked up. Unless you looked real close and saw the tube coming out of the bottom of my shirt…or the giant patch holding the needle in my port.
The first two rounds weren’t terrible. I think the not knowing what to expect…and waiting for the side effects to hit were the worst. The first round I did get a little nausea on my way back to the cancer center to get unhooked. Unhook day was my worst day. Everything hit by then. I never really got sick…(throwing up or anything) but I just felt terrible. I couldn’t wait for that day to pass. After my second round was the my off week and the county fair. I would say I “faired” pretty well. I didn’t get to see as much and be as social as I would have liked…but I was there and I was cheering the kiddos on as they showed their cows. I admit I was scared to death…I was hand sanitizing like a fool…but made it thru just fine. During those first few weeks and rounds I was certain I would lose my hair. I feared it would be fair week. I didn’t want to take anything away from that fun week for the kids. I remember that Thursday night, Friday morning I started losing strands by the handfuls…not clumps..but about 10 strands at a time. Friday night I walked thru the sale barn and walked right in front of one of those huge fans…for a second I just knew my hair was going to fly right off and land on all the people in the crowd. I even laughed at myself after that! I would guess I lost about 1/2 or a little less of my hair…but just strands, never clumps and I didn’t have to shave it. I also didn’t get the benefit of not shaving my legs…boo. If you didn’t know me and you saw me or came in for a session during this time…you probably wouldn’t have realized what I was going thru but thought to yourself….”Man, you’d think she could fix her hair a little”…or “She needs some sleep”…ha! 🙂
Saturday after the fair we went to watch my uncle pull at the McLouth Tractor Pull…I was feeling tired but didn’t want to miss out on the family fun. Dolly didn’t want to miss it either (sneaky photobomber).
From then on out it was…
I kept trucking along and found out going into my 4th treatment that I could possibly stop at 6. They are doing trials for only 6 rounds and my doc was ok with it. It was really up to Ernie and I on what to do. I was so conflicted…I had excitement that it could end early…and I was scared about making the right choice. Failure isn’t an option. I have always had a fear of failure…and over the past few years I have conquered that fear by stepping out and doing things I never thought I could. Those weeks between treatment 4 and treatment 7 were the worst. I was probably depressed…I was scared…I felt the worst. We lowered my dose for round 5 to help me cope with the symptoms better. It took awhile (about 2 more treatments) for that to kick in. My worst treatments were round 3 and round 6…I dreaded round 9. I went into my 7th treatment fully intending to stop treatments. I hadn’t planned out my week…I was expecting to go visit my new niece after the appointment..I was done. But that morning I woke up with a little doubt…and I could not let that doubt hang over my head. Treatment day #7 was tearful…I was sad, scared, and feeling weak. After that day I just put my mind to it that I was going to make it thru all 12 treatments and that was that. Push thru….Fake It Till You Make It.
Round #10…it was November 11th. This was the first time I really felt the end in site. I knew I was getting closer to being done…but even at #9…4 treatments felt like a lifetime away. November was a busy month. Lots of babies being born…birthdays, holidays, basketball for one of my littles…lots to do..no time to be down. I made the decision early on that I would try to continue and photograph my newborns while I was going thru treatment. I limited the amount I booked…and after September (and a few pretty yucky treatments) I decided to stop booking anything that wasn’t already on the books. I didn’t want to disappointment my clients if I wasn’t feeling up to it. I spent my ON weeks in bed…pumping chemo…then sleeping it off, or wishing I was asleep so I didn’t have to feel bad. Monday’s were typically the day I started to get the nasty film off my tongue and be able to drink again…Tuesdays I started to feel a bit more energy and was at work…and so on. I tried to cram 14 days into about 5 feel good days. I wasn’t great at slowing down…If I had a particularly busy GOOD WEEK…I typically paid for it during my next ON (chemo) week. It was a bad cycle that was hard to break. I am grateful to have had my work…and my kids to keep me busy. I can see how if I didn’t have those things I could have gotten to a very ugly dark place. But I didn’t have time for all that !:)
You can see I was getting a little thin on top. I had one thing working for me…I am tall…so not many people could see the top of my head!
I have definitely been more BLESSED thru this journey than I have been hurt. The outpouring of love my family received…the prayers, the meals, the food, the gifts, the love. The smiles, the tears. I can’t begin to repay or thank everyone enough for all that they did to help us thru this. I truly believe I could feel the prayers and the healing. Every treatment on the second day the sun would pour into my room and I just know it was gods love shinning down…he heard all those prayers…and he wanted me to feel that! I did!
Round #10 was my last round of chemo. The Oxaliplatin started taking its toll on me. After round #9 the numbness did not stop or come and go like it had in the past. It stayed. I had called in advance to tell the doc because if this happened we were probably going to drop that drug completely. It was Thanksgiving week and I had my appointment a day earlier than usual…so I wasn’t meeting with the doctor first like I typically did. I went straight back to the chemo chair (after a lovely chair massage…she is there on Mondays FYI). My sweet nurse Nancy told me that we were going to wait to hook me up until after the doctor talked to me because of my “quality of life issues”. (that just means anything that is bothering you…pains, sickness…etc. For me it meant the numbness). So I got all settled in…my computer out…magazines out…and I was getting ready to go make me some hot chocolate when Dr. Reddy came back. He said simply “Well…with your quality of life issues…lets just be done”. I said “Ok…done with the Oxaliplatin?”…he said “nope…lets be done with all of it…done done”. I am pretty sure I scared him to death when I jumped out of the chair and hugged him! I couldn’t believe it. I broke out in the ugly cry…like the Julia Roberts Steel Magnolia’s ugly cry..ugly cry! Then I jumped up and down…then sat down and cried…I was a mess! HA! It was a joyous day…and a wonderful Thanskgiving gift!
I am now 8 weeks out from my last Chemo treatment and starting to feel pretty good. I still don’t have great energy but I don’t feel Yucky! And I realize now just how yucky I was feeling even on those “good weeks”…again Fake it Till You Make it! I had the surgery to remove my port on Monday December 29th…and I am going to stamp that as the end of this journey! The port coming out really did signify the end for me…I feel like a weight has been lifted (proabably because my 3rd boob is gone) Yes, I have lots of fun follow up…but the worst is behind us! Here’s to ringing in the new year CANCER FREE! Bring on 2015!
A big THANK YOU to my clients for sticking with me thru this journey. It was so so very hard for me to turn down sessions this fall and not get to see everyones sweet faces and to see how much your little ones have grown! I can’t wait to see what 2015 will bring for my family as well as for MRP!
Find out more about Colorectal Cancer
Fight Colorectal Cancer – .com
Fight Colorectal Cancer – Facebook
Get Your Rear In Gear – Facebook
(my sweet friends and family ran this race in honor of me)
The Colon Club – .com
The Colon Club – Facebook
Love Your Melon – Great Quality Hats…Great Cause
Notes To Self – Socks I was gifted and loved! (they are at Naomi’s Hallmark-Shawnee)