WAR

firstchemo

 

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

sun_pin

 

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About herecomesthesun927

Hi there, I'm a mom of two sweet kids, wife, and proud Kansas Citian. I've worked as an oncology nurse nearly my entire adult life. I really thought I got what it felt like to go through a cancer diagnosis, I didn't. September 2016 I was diagnosed with stage 3 colorectal cancer and my own journey began. My lowest point during the diagnosis phase was going in for staging CT and MRI scans to see if the cancer had spread throughout my body. I was crippled with fear. The first song that played through the speaker as I was laying in the MRI scanner was "Here Comes the Sun" by The Beatles. A calm came over me, and I decided that would be my theme song. Sun sun sun... here it comes.
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15 Responses to WAR

  1. kathleen100 says:

    Mary and I have been wondering about NP grad school. So sorry you have to put it off, but totally understandable. I have always thought it would be great to be a NP. A perfect blend of nursing and medicine. I always love seeing NPs.

    Liked by 1 person

  2. Kehly says:

    LK- I admire your strength and motivation as you t starting this journey. We pray everyday for you and your family. You have an army behind you and the best friends that anyone could ask for. Stay postivte, you got this 💪🏻!

    Liked by 1 person

  3. onelasallian says:

    Lindsay:
    360 more people praying for you and your family! (San Miguel HS, Tucson). Senora and I as well. Wish we could do more, but know that many are with you!

    Mr. Meyer

    Liked by 1 person

  4. Sally says:

    Just read your post about ‘not getting it’ and every word rang true for me, so we’ll written thank-you although I read it crying my eyes out it makes me feel better than someone else feels the same!
    Good luck with your fight! Xx

    Liked by 1 person

  5. Tanya says:

    Praying for you… for strength, courage, faith, and rays of hope when your heart feels heavy.

    Liked by 1 person

  6. Redd Stahl says:

    Our family has been thru this too. Too many people I know. Keep fighting and know God loves you. I wrote about my experience. Great therapy. If interested, check it out. Might help.

    June 10th interview – my segment begins at the 7:50 mark so you can scroll thru the part up to then and it lasts about 22 minutes

    http://kprcradio.iheart.com/media/play/27068332/

    August 5th interview – my segment on this one begins at the 30:40 mark and lasts about 9 minutes to the end of that hour

    http://kprcradio.iheart.com/media/play/27209441/

    Here is the Amazon link if you care to read the reviews.

    https://www.amazon.com/Medically-Unaffected-Cancer-Affects-People/dp/1533699089

    Liked by 1 person

  7. Alex says:

    I am praying too.
    Thank you Lord for peace when it all gets too much. Thank you for strength in body and mind. Thank you for fun family times in the midst of the treatments.

    Cancer be gone in Jesus’ name. Amen.

    Like

  8. shannon says:

    from another nurse who didn’t get it…thank you. wonderful post. i had to retire early as i could not take all the interruptions…what? another surgery? fatigue does not even touch how i feel when i overdo it like i did YESTERDAY. today was a write off. poor pup did not get her walk. hard to walk horizontal…still….another day under our belts…sending love…

    Liked by 1 person

  9. Hi Lindsay … My name is Rachel and I am the parenting editor at Us Weekly. Can you please email me?

    Liked by 1 person

  10. It’s so interesting to read your perspective now that you are a cancer patient as well as an oncology nurse. Your post about not understanding described every emotion I have been feeling.

    Liked by 1 person

  11. Lorin Loomis says:

    What a humble and self reflective way to look at herself. I imagine she helped her patients, even then, much more than she realizes. Her truly compassionate attitude can only help herself and others heal

    Like

  12. Cheryl Rimel says:

    Hi Lindsay, I am an older version of you only worked in GI nursing. Diagnosed with 3A breast cancer and got on that cancer train baby! Here’s the thing…..we are both going to wage this battle and WIN!! I got a kick out of you describing your first day of chemo/radiation. I felt the same way waiting for chemo. Like FINALLY, we’re doing this! I know you aren’t going to lose your hair, but I loved losing mine. It was like drinking that Drano was really working! Enjoy your weekend, snuggle with babies and your husband.

    Like

  13. nancy0455 says:

    Hi–I am also a nurse of more than 30 years and was diagnosed with AML in early May of this year. Today, I was told that I am in remission and my PICC line was removed, after 7 months! Like you, I thought I understood what my patients and families were going through; I really had no idea. When I go back to work, I think that I will be a different nurse. I’m definitely a different person; more scared, more of a loner, less gregarious, very prone to tears. Today has been such a joyful day yet, for me and my husband, we are a little reserved, a little too fresh for us to party. We are scared to use any word beyond “remission” and will take it day by day. Our families and friends are beyond thrilled and I think that they don’t understand our fears. This last seven months have been a brutal, exhausting time and I’m hopeful, within a couple of months time, that I can go back to being myself. BTW, the “brave” thing gets me, too. So many people used that word to describe me. I wanted to cry. It’s not bravery, its just doing what you have to do to survive. No choice. No options. No, I am not brave. I put a lot of faith in my doctors, caregivers and medications and let them guide me to recovery. Good luck to you.

    Nancy

    Like

  14. Catherine says:

    I lived through a cancer diagnosis 17 years ago this month when my babies were little. Reading your story with all the emotions, appointments, fears, waiting, anxiety, etc… was SPOT on and brought it all back. Actually, you never forget it. You do move on, but are always keeping a watchful eye for anything that might be “different.” Prayers and best of luck. A strong team, supportive husband and kids to snuggle at night help tremendously! Godspeed!

    Liked by 1 person

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