Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

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Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

 

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

 

I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures… and the scans. Ugh, the scans. You were going through the motions trying to stay positive- but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat is yet is an awful, helpless feeling. I’m sorry. I didn’t get it.

 

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

 

I didn’t get how much you hung on to every word I said to you. You replayed it in your mind a hundred times. Did I really mean this or that… you wondered if you understood. You called me again to make sure. And maybe another time because your friend asked “well, what about _____”. You asked your other nurses to see if you got the same answer. Please know we are happy to take a million calls a day with the same questions until you can make sense of it. I’m sorry. I didn’t get it.

 

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

 

I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how aaaare you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.

 

I didn’t get what really goes on at all those “other appointments”. I knew what to tell you to expect at your oncology appointments- but all the different types of scans, radiation, operating room, procedural areas- I didn’t really know what went on behind the scenes there and what to tell you. I should’ve known more about the whole picture. I should’ve been able to warn you that there was an hour wait after a dose of medication before you could actually have a scan. I should’ve been able to tell you what you can and can’t eat or drink before a certain procedure or that some treatments require going every single day. I’m sorry. I didn’t get it.

 

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

 

I didn’t get how crazy this makes you. Like you literally wondered if you had lost every working brain cell. Especially when dealing with side effects or other symptoms. You could’ve had every side effect in the book from chemo or none at all and you’d still wonder if it’s really working the way it’s supposed to. You may just have had a headache, or a common cold, or a sore joint- but you were never certain it wasn’t related to your cancer and always wondered if it was a sign of progression, even when it made no sense. I hope you didn’t feel dismissed when you called me to ask about it and I said not to worry. I’m sorry. I didn’t get it.

 

I didn’t get why you were always suspicious. You couldn’t help but wonder if they all knew something you didn’t about your prognosis. We shared the percentages and stats with you – and that every cancer is different … but still- is there something more? Something they were protecting you from or just felt too bad to tell you? Logically, I know the answer to this but find myself with these feelings as well. I’m sorry. I didn’t get it.

 

I didn’t get how confusing “options” really were. In some cases, there may be more than one choice. Whether this be physicians, medications, sequence of treatment, etc-  I would try my best to help you understand every angle, but more options many times just meant more confusion. You wanted to be involved in your own care- but the stress of too many options was sometimes too much. You begged me for my input and to tell you what I would do if it were me. I hated that question, but I hear you now. I’m sorry. I didn’t get it.

 

I didn’t get how hard it is to accept help. Especially the moms. This just wasn’t something you’re used to doing- but you needed it. You felt shy about admitting that you’re not sure you could’ve gotten through the first few months without the extra food, gift cards, support, and other help you were given. You felt humbled at the outpouring and just only hoped you would’ve done the same for them. You still wonder if you said thank you enough or if you missed an opportunity to give back. I’m sorry. I didn’t get it.

 

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

 

I didn’t get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue- but there should really be a separate word just for cancer patients, because it’s crippling. Really. Some days you really wondered how you’d trudge forward. I’m sorry. I didn’t get it.

 

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

 

I didn’t get how strange it was to see your body changing so quickly. You stood there and looked at yourself in disbelief in the mirror. Maybe it was extreme swelling, maybe it was scars, maybe it was hair loss, maybe it was pounds melting away when you do everything in your power to eat as much as you can. It’s hard- your appearance is tied more closely to your identity than you’d like to admit and these were constant reminders of what you were up against. You just wanted to feel like yourself. I’m sorry. I didn’t get it.

 

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

 

I didn’t get how much you worried about your kids. For this, I’m the most regretful. I should’ve talked to you more about them- and not just in terms of lifting restrictions or germs. You worried about how this was going to affect them. You worried about not being able to keep up with them or care for them properly on your bad days. You worried they’d be scarred and confused. You worried about leaving them. I’m sorry. I didn’t get it.

 

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

 

I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something- it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized – it is not a phase. Yes, there are phases- the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I hear that gets better- time will tell. And time is precious. I’m sorry. I didn’t get it.

 

I do have to admit; I’ve probably had it a little easier than you to start off. I know the language, I know all the right people, I work where I get treatment so sure- it’s more convenient. I watched so many of you march through this terrible nightmare with a brave face and determination- without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you. Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great- it’s good for the oncology nurses’ soul. Even though healthcare workers don’t really know what it’s like to be you (well, us) it’s ok. Nobody does. I just hope that I was still able to give you a little guidance and strength to help you get through your cancer treatment. Even if I didn’t get it.

 

Love,
Lindsay, Oncology RN

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WAR

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Today I declared war!

 

War on this nasty disease that has consumed way too much of my life already and it’s just the beginning. I woke up today deciding this is it- I’ll never get another day 1 and I’m going to knock it’s socks off. I got up early (who am I kidding, that was because of the baby- not pure motivation), got hyped up with little pep talk to myself, and downed my first dose of oral chemo.  I walked over to my bed and sat in front of the news to wait a minute. Hmm, do I feel different yet? …Nope! Wellll, ok then- that was anticlimactic…better get to work. As I was getting ready for work and hyper focusing on what my body was feeling like- a large feeling of relief came over me. First, it’s begun- the treatment has FINALLY begun. I have known about my diagnosis for 28 days now, and it’s seemed like an eternity. The nurse in me knows every single step we’ve already taken is important but it doesn’t make those waiting days go by any faster! BUT, it’s here! It’s really here and I’m oddly so excited. I feel like we’re finally DOING something rather than talk talk talk- so much talk. And so much waiting… all while it just sits in there taking up residency. But no more- like I said… WAR. The other reason I felt so much relief is I’ve been nervous about having some sort of allergic reaction or something to the medication. I know it would be rare- but you know how I like to do rare things (eye roll). So thankfully- no surprises this morning with the first dose! That’s actually another favorite new saying of mine “no surprises… no surprises… no surprises”. I kind of like to repeat it like a meditation or something. I’ve processed my diagnosis but I’m not ready for extra surprises, I still feel too fragile. I know setbacks or little curveballs may pop up along the way- but like I said, not yet… not ready.

The first time I prayed and focused on “no surprises” was during my PET scan last week. I thought I was done with scans, but the radiation oncologist (Dr. Shen) wanted to add a PET scan on. Not because he didn’t trust the results of the CT and MRI- but because he just wanted to make sure no other areas in my pelvis (or even higher) are lighting up at all. If we know that in the beginning, then he can target those areas with the radiation too. He said it’s not standard- just another view to make sure… I don’t mind being special so we did it. I was pretty nervous it would pick up on some areas the other scans didn’t (enter “no surprises… no surprises”) – but it didn’t! Thankfully the PET scan didn’t show any other areas of enhancement at all (other than the tumor). It did still see the enlarged lymph nodes that were noted on the CT and MRI- but it stated that they showed “minimal metabolic activity”. Nice, huh!? I was happy do show them a boring picture!

Anyways… today went well- uneventful actually, which is all you can hope for. It started with a beautiful sunrise, that many of my sweet friends actually texted me photos of, and an always entertaining drive to school with Harrison. No lying, you guys- when we were driving down the highway he (completely unprompted and out of no where) said “Momma, isn’t the sun pretty?”… yes, buddy… it sure is. It sure is. Dang it I love that kid.

This first phase of treatment will last about 5 ½ weeks and consists of taking an oral (pill) chemotherapy called Xeloda (Capecitabine) and receiving radiation treatments every weekday. Like I’ve mentioned before, after this chemo-radiation combo, I will have a 6 week break, followed by my surgery, followed by another 6 week break, then 4 more months of IV chemotherapy.

 

Hair today, gone tomorrow?

Actually, no. With my type of chemotherapy, I do not expect to lose my hair, maybe just some thinning. At the risk of sounding vain, I am thankful I’ll keep my hair. For some reason I think it will be less confusing for my kids.  I’ve gotten a lot of other questions about how the treatments will feel and what side effects I can expect-  here’s a brief low down of this first phase of treatment!

 

Chemo-Radiation (5.5 weeks- 28 treatments):

  • Xeloda – three pills twice daily (morning and night). My nurse practitioner said she’s pretty sure it’s the smallest dose she’s ever calculated (it’s based on BSA) haha #littlepeopleprobs. Side effects may include nausea and vomiting, diarrhea, fatigue, peripheral neuropathy, hand and foot syndrome (dry, blistering, cracked hands and feet), mouth sores, and decreased appetite/ weight loss.
  • Radiation Therapy- every weekday. Side effects may include skin burn, fatigue, diarrhea (seeing a theme yet), and pain.

 

The radiation portion has actually been quite interesting to me. I’ve been an oncology nurse for quite some time and just haven’t ever worked in that area or had much exposure to it. Like I mentioned in a previous post- I had to get “mapped”. This included me laying on a CT table while they took several low dose scans and marked out how and where to best deliver the dose of radiation to my tumor, and also to the surrounding pelvic area. After it was determined which position I’d be in… they made a mold of my legs to make sure we re-create the same position each and every time. They also gave me four tattoos to map out where the dose will go to help line up the machine every day. As far as the treatment itself, it’s super quick and painless. It takes a total of about 15 minutes as I lay still and let the large arms of the machine rotate around me. It’s actually kind of oddly hypnotizing and relaxing. I can’t actually feel anything, maybe just a little warmth. Then, that’s it! I’m back to work down the street!

After this first phase, I’ll get scanned again and hopefully see a much much smaller tumor- and prepare for surgery! I keep daydreaming about a fun little trip to take during my 6 week break – we’ll see  :)

Well, I suppose the only other update I have is that I’m officially no longer a Nurse Practitioner student. I thought and prayed about this a lot- trying to come up with any way I could make it work. But I ended up making the tough decision to pull out of my courses. I’m pretty bummed to be honest. I have wanted to do this for so long- and I was (am) really proud of how well I was doing. Stupid cancer. I just decided that my health has to be the main focus right now and adding that stress is just not necessary. It was the easiest thing to take off my plate, so I did. I have every intention of restarting after this mess is over- I know this experience will make me a better healthcare provider- it already has. Cancer may have won this battle, taking away my study time and forcing me to pause my dreams. But it will not win the war. It will not.

XO

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Squad Goals

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Thought I would introduce you to my dream team! You may not know who’s all involved in the treatment of a cancer like this. Obviously, each diagnosis is different and requires various therapies and providers – but here is my squad:

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Dr. Joseph Valentino– Surgical Oncologist. Dr. Valentino is the surgeon who found the mass (bonus points) and initiated the whole process. He will perform an abdominoperineal resection (APR) with permanent colostomy after my chemo-radiation is complete.

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Dr. Raed Al-Rajabi– Medical Oncologist. Dr. Al has created a chemotherapy treatment plan and will closely monitor me with clinic visits, lab work, and periodic scans as I progress (strike that, bad word)… move through treatment. I will also have close follow up with him after treatment is complete.

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Dr. Xinglei Shen– Radiation Oncologist. Dr. Shen has planned out the approach for my radiation treatments by taking several scans to determine where to target the doses of radiation.

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Dr. Annie Jewell– Gynecology Oncologist. Dr. Jewell did a laparoscopic oophoropexy  to move my ovaries out of the way of radiation. She won’t be following the rest of my treatment but she’s awesome so she’s still squad🙂

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Camden Norris– Private Duty Nurse. Camden will be there every day, all day, for like 70 more years to do whatever I need. He’s specifically trained in humor therapy, back rubs, and movie/TV accompaniment.

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Evelyn and Harrison Norris– Professional Distraction/ Inspiration Experts. Evelyn and Harrison are highly skilled in the art of distraction and giggles. They have magical powers to keep their parents smiling and to help get through any challenges.

 

 

I feel so very fortunate to have the support and love I have from the rest of our family and friends. I’ve had amazing meals (which has proven to Camden even more that I’m a kitchen failure- haha), beautiful cards, visits, handmade gifts, cleaning services, personal training services, gift cards, friends that follow me to daycare to lift my kids in the car… I mean the list does. not. end. You guys are really outdoing yourselves and I’m just getting started. I really don’t know how to express our thanks – but thank you, from the bottom of our hearts- thank you. We are humbled.

 

XO Lindsay

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The Low Down… of the down low

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I created a space to give updates as well as give some background as many have asked what has happened up to this point, what led up to my recent diagnosis, and what the plan of action is. Of course I don’t mind answering questions, but this will be an easy way to keep several people updated at once. We’ve already had an overwhelming support system form around us and we are incredibly humbled and grateful.

And fair warning- you all know I’m a nurse and that I’m not afraid of details. If I’ve learned anything from my first health crisis with HELLP syndrome- it’s that knowledge is power. So- if sharing the embarrassing details of my journey encourages someone else to get screened or checked, then it’s a win. Who knows, it could even save a life!

In the third trimester of my recent pregnancy, I (like so many others) developed hemorrhoids. These were nothing that slowed me down or caused much pain- they were just… there. No big deal. As my pregnancy neared the end, I started to have decreased appetite and upset stomach. Still all very normal “preggo probs”. I was just so thrilled that I was full term without any signs of preeclampsia or HELLP in sight- I soared right up to my beautiful scheduled delivery at 39 weeks. Evelyn Alice joined us that morning with no complications at a whopping 7 pounds! My first words were “she’s huge”🙂  Such a big difference from my little 2 pound peanut 3 years earlier. Recovering from my C-Section was uneventful with no concerns. My OB, Dr. Steinbis, and I chatted about my hemorrhoids briefly at my 6 week postpartum visit and decided to keep an eye on them as they hadn’t changed and weren’t causing issues. It was still pretty soon after pregnancy to expect them to disappear and I was more focused on panicking that she was moving away- tears! The weeks moved along and I went back to work. I was noticing a little more mucus in my stool with some blood and the hemorrhoids hadn’t budged so I made an appointment with my primary doctor. She did an exam and we discussed a plan. They weren’t firm or sclerosed and not causing much discomfort so we decided to increase my fiber and water intake, use over the counter creams, and follow up in 6 weeks when my yearly physical was due.  Throughout those 6 weeks I noticed more mucus and blood and even started experiencing some urgency to get to the bathroom on time- all things I just attributed to the hemorrhoids causing pressure. I was also noticing some pain over in the center of my right buttock, assuming it was nerve pain from the hemorrhoids. I began to wonder if I had some larger internal hemorrhoids causing problems so I scheduled my yearly physical with the intent of following up. At this visit I had a normal physical exam with all normal labs – just the increased GI symptoms were the only thing worth mentioning. She quickly suggested it was time to “get those taken care of- it’s a quick procedure” to remove persistent hemorrhoids. She told me she’d enter a referral to colorectal surgery. (ha- what? no way am I doing that… I know all of them and all their teams) I smiled politely knowing I was going to ignore the referral and left. Surely they’d resolve soon, if I was better about my diet and water intake- they weren’t really that much of a bother.

That weekend my bestie Katie was in town- we sat chatting and watching a movie as I was complaining to her about my little annoyances. She quickly said, “oh suck it up and go- they do this all the time”. Ugh, she was right. That next week, after I pondered about which one I’d like to see (I choose the one I knew the least, ha), I snuck over to his nurse’s cube (which is in my office) to tell her I needed to see her doc. She quickly agreed to throw me on their schedule for their next clinic day and assured me they see this after pregnancy all the time. That Tuesday, September 27th- I went into his office for a consult. I fit it in between meetings thinking it shouldn’t take long. As I started giving him the history, he began asking more questions- specifically about the urgency and the mucus. As he was digging deeper (uh figuratively at this point… that comes later) I could tell his mind was turning and this wasn’t a normal postpartum hemorrhoids discussion at this point. He did an exam there in the room- I sat back up- he took a breath – and said “I actually feel a mass in your rectum”. My heart sank- what? a what? He quickly got me set up in the procedure room for a more thorough exam (yes it’s as awful as you imagine) to try and get a better look.  So this is when my friend I work with had to give me two enemas and I had to sit and wait for the next exams- yikes. At this point I started furiously texting Camden (my cell service isn’t great in the middle of the building so I couldn’t call).  “Baby, my appointment isn’t going as planned” “He found a mass- I have no idea what he’s thinking but I can tell he’s concerned” “They’re making me do more tests, this is awful” “Can you please come up here? I afraid he’s going to have something awful to say”

he did….

After doing a anascope and a rigid proctoscope (think: on your knees, way up on a table, with things going where the sun doesn’t shine- not fun), Camden was able to join us back in the consult room for the discussion.  You guys- I have seen this talk hundreds. of. times. The changed tone of voice, the clasped hands, the deep breaths, the pursed lips… I knew what was coming. He explained that he saw a friable (crumbly), firm, large mass about 5 cm up… the way it looked and the way its was acting- he was able to say he didn’t see a scenario where this was not a cancer. Obviously we would need pathology to confirm the type, but he was certain this was not benign. I’m very thankful for his honesty right in the moment. Obviously our minds were numb and we were horrified- we quickly reviewed what needed to be scheudled next, the nurse assured she would work on it and call me- I wanted out of there. I told a few people I needed to leave, and Camden and I drove off. That afternoon is a huge blur but I’m pretty sure we just went home, sat on the floor, and cried. Maybe when I’m further away from it I’ll be able to explain the feeling better. Hit by a truck, world turned upside down, floor ripped from below you- those all seem close but just not quite bad enough.

The next step was a colonoscopy with biopsies on Thursday 9/29 (shout out to my team for getting it scheduled so super fast! and with the best doc), then staging scans on Monday (CT of the chest, abdomen, pelvis and MRI of the pelvis). Wednesday night was rough doing a bowel prep for the first time- I threw up a lot and needed to have extra medication to get clear- ugh. Thursday itself wasn’t bad at all… the GI team and KU is amazing and I was comfortable the whole time. The procedure went well – they saw the mass but no other lesions along my GI tract (thank God! I was afraid it was some sort of “tip of the iceberg” situation where there were more tumors higher up) and they said it seemed localized to the area. They described it as “involving 3/4 of the circumference of the rectum”- oof. – but not invading other structures. The GI doctor was able to get several pictures and biopsies. She agreed that this was most certainly a cancer and she also couldn’t think of any alternate scenarios. I really did enjoy all the staff there- they were all very informative and comforting (I suppose part of that could be the profofol- I did decide to cry about my missing high school cat when I woke up from anesthesia, ha… love you Gracie!). Recovery from that was a breeze- nice nap that afternoon- call that evening confirming the diagnosis (ugh- but like I said- because of the surgeon’s honesty I was preparted to hear it) Rectal Adenocarincoma- then my next feat was to get through the weekend before scans.

That weekend we thankfully had tickets to the Royals last home game! It was an amazing day full of our sweet kids and beautiful distraction. That night was a different story- I think that’s when it all hit me. I was getting scans the next morning and I was terrified it was everywhere. AND let me tell you- I’m a smart person, BUT- you can manifest ANY fake symptom when faced with this. I was having tightness in my chest, stomach pain, headache, you name it! The uncertainty is mind numbing. Thankfully, Camden was with me to distract me with his sweet humor and protection throughout that Monday as I had all my scans. Laying in those tubes has got to be the most demoralizing and vulnerable feeling I’ve ever felt. I was placed in the MRI machine and the first song that came on was “Here Comes the Sun”- my new theme song, motto, motivation, obsession… whatever you call it. The feeling that came over me when I listened to the words is indescribable! I knew I wasn’t alone. There’s only one other time in my life I felt such clarity and that was in high school at a TEC retreat during meditation (another story for another time). THEN just when I thought He was done sending me my message that “it’s alright” – the second song that played as I laid there was our wedding song- “Stand By Me”. Of course my mind went directly to my husband who had already been my rock throughout this horrible week. Lesson learned- the Sun will come, all will be alright- and there’s no reason to be afraid, as long as my husband is by me. I felt so encouraged, and the day got even better. I rushed back to work at the Cancer Center to find my friend (the surgeon’s nurse) – my CT and MRI were already back- NO EVIDENCE OF METASTASIS Amen! What this means is the cancer was not found anywhere else in my body- obviously my biggest fear at that point was that I was metastatic and without many treatment options. They did notice some enlarged lymph nodes embedded in the fat just around the tumor- so with those, and the size of my tumor itself- that makes me stage 3.

 

The rest of my time up until now has been filled with choosing the rest of my medical team and deciding on a plan. I already had my surgeon who found the tumor. I have also met with radiation oncology and medical oncology. Luckily I know all the right people and have been able to hand pick my dream team! Listen- yes it is awful to have the disease you’ve spent your entire career trying to treat turn on you – but there have been some major perks to being a “VIP”- our Cancer Center family has always taken care of our own and I am so thankful for everyone who has been working like crazy to keep me in line- both inpatient and outpatient families.

The general plan that was decided (I’ll go into more detail about treatment in a later post for those who are interested) is this:

  • Oral Chemo/Radiation for 5.5 weeks (every day except weekends)
  • 6 week break
  • surgery (total resection with permanent colostomy)
  • 6 week break
  • 4 more months of oral + IV chemo

In order to get started as soon as possible- I have to get “mapped” for radiation. This is when they do several scans and calculations based on my tumor and anatomy to plan out their approach for radiation therapy and find the perfect position for me to be in each visit. There were just a few minor things in the way before we could schedule that mapping… my ovaries! NO- I am not preserving my ovaries for future fertility reasons- I am preserving them to avoid going into immediate menopause which could lead to a host of other issues throughout treatment and long term (think: osteoporosis, even more increased breast cancer risk, horrible hot flashes, etc.)- so enter in gynecology oncology. The surgeon saw me quickly when learning we had to do this fast and got me on the schedule for her next surgery day. I had the procedure on Thursday and am still recovering. They were thankfully able to complete the oophoropexy (gesundheit) laparoscopically – a concern because of my significant scar tissue from my previous emergency c-section… and all was succesful! The procedure itself only has a 50% chance of really avoiding menopause- but at least we gave it a try! I’ve really just been sore and bloated- the procedure wasn’t awful (and I didn’t cry about any cats this time)… and I’ve had some cute nurses around here at home taking care of me (plus amazing friends bringing loads of food and treats over).

Anyways- so that’s where we are. Still many unknowns-  anxious to get started- keeping my mind out of the dark and looking for that sun! Thanks for the support and prayers- I’ll keep updating!

strongarm

rc

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