mesh. undies.

rad

Yep, mesh undies. You know, the ones you get from the hospital when you have a baby?! Well- they are once again here to save the day! More on that and other new updates further below.

I haven’t posted in a while… at first I think I was probably a little overwhelmed at the attention my last letter got. Wow, such an amazing experience to have my words shared by several media and news outlets. My letter has had almost a million views in hundreds of countries. It’s been translated to three other languages that I know of and I’ve heard of some hospitals using it in their curriculums. Some other exciting things are possibly in the works as well (no, Ellen hasn’t called haha). I certainly wasn’t expecting so many people to read it, but my favorite part of this whole experience has been the outpouring of emails and messages I’ve received from cancer patients, survivors, caregivers, healthcare workers, etc. Having people tell me that I “nailed it” or I validated their feelings or that I was able to put into words what they’ve been trying to explain just warms my heart. I still have emails coming in each day and am wayyy behind on replying! I can’t believe some of the elaborate, heart-felt, long, long messages I’ve gotten- I want to write each person an entire book back. I’ve always known there is so much love and support in the oncology community but wow! I really am humbled. I’ve started just keeping them in an email folder to get back to when I have time or maybe during surgery recovery or future chemo days. I feel so lucky to have connected with so many beautiful people and the nurse in me feels proud I’ve been able to make a positive impact. It’s been very therapeutic for me as well- I’ve had many people send survivor stories full of hope and encouragement! It all came at just the right time.

A little recap- I started chemo (oral pills) and radiation at the end of October. This is the standard first phase of treatment for my stage/ type of colorectal cancer. If I were to briefly describe each week since starting chemoradiation it would look something like this:

Week 1– hmm… anticlimactic.

Week 2– oh, this schedule isn’t that bad- I can keep it up. I feel a little nauseous but ehh, meds cover it. Wait, grrr… my tumor marker labs went up (CEA 18… it was 12 at diagnosis), what does this mean- is my cancer getting worse. sigh- wait and see…

Week 3– This really isn’t bad, what do people really complain about anyway.

Week 4– ok, who THE HECK hit me with a truck! I literally can not keep my eyes open and I can’t even look at food. Frustrated I’m loosing too much weight- bring on the Ensure shakes!

**check up in here: Saw the NP to review labs and symptoms. Thankfully my tumor marker levels had gone back down a little (10) so that shows some response but it was hard to not be skeptical. I had her check my skin and also was concerned because I saw and felt a few lymph nodes in my groin. I asked if she’d check them out…  “um, Lindsay”… “yeah”… “those are veins”… “OH yeah yeah, I knew that!” (quietly sneaks out to go find old anatomy text book)

Week 5– Wth, when did I sit on a hot iron? owwwwwie

Week 6– nope, just nope. I’m over this. but yay I’m finished going every day!

rad-bell

Week 7– Ok ok, jokes on me… I had my last treatment a week ago and my rear still hurts. What gives? I can’t even wear real underwear! (enter: mesh undies)

Week 8– Phew, starting to feel a little better. Skin is healing and starting to peel. eeek. Hey look, I gained a pound! (remind me to buy stock in Ensure)

Week 9– Alllmost normal, maybe just a little achy. Do I have to give up the mesh undies though?

Week 10– Yep, I officially feel great! 100% normal! Just in time for the holidays- what a perfect distraction 🙂

That brings us to this week. If I’m honest, it was a roller coaster. While I was doing radiation I focused on keeping up with the schedule and managing side effects (oh yeah- remind me, also buy stock in Aquaphor) but as soon as it was over, my mind turned to “what’s next?” Well, next were some tests to see if any of this is working so far! On Tuesday after the holiday weekend- I got my labs drawn and had a wonderful surprise. All my blood counts were returning to normal and I was shocked to see that included my CEA! CEA (which I’ve mentioned a few times above) is an antigen found in GI cells that acts as a tumor marker for colorectal cancer. A normal level is below 3, mine has been as high as 18… and on Tuesday it was 2.5! That’s it! Normal range. Even for someone without cancer. This is very exciting to have a normal level before the tumor is even removed! I was on a huge high going into my scans on Wednesday morning. I had a CT of the chest, abdomen, and pelvis, and a MRI of the pelvis. Procedures went fine, contrast still tastes gross, and the music still came through in the MRI (I requested Beatles again- this time the first song was “Yesterday”… it even played twice when I was in there for the 45 minutes or so). I saw the report later that day- first thing I noticed was the cancer had still not spread anywhere in my body, thank goodness- that was the most important thing! But then I saw the measurements and was a little bummed. My tumor started at 5 cm and now was measuring 4.3cm. hmm that didn’t seem very exciting. But hey it was smaller! I think it’s just jarring to still see any measurements at all. Some secret part of me hoped the report would say something like “oh, we can’t find any tumor at all”. 4.3 still seemed pretty big to me- but talking it through with the nurse practitioner, I was reminded that some of that area that is measured could be just “dead” or inactive scar tissue- and my CEA was still normal so something is improving. AND it IS smaller! ugh it’s just so much to take in. Don’t get me wrong- I was so thankful my tumor showed signs of response and it hadn’t spread, but you just always hope for more. You always want best case scenario. I’ve found that anytime I get any new information, even if it’s “good” – it still takes a while to even process it. It’s too overwhelming to add it to the bank of information you’ve already wrapped your mind around… how does this fit in? what does it mean? I feel like every result, every decimal point, every twinge or ache, all has such an impact on my future and my chances of surviving. Anyways, like I’ve admitted- and I have have no clear explanation for the feeling- I was bummed. As I was driving home I kept thinking, “Gosh, I was on such a high yesterday. Yesterday when I saw my low CEA level I was so encouraged and happy. Today, I just don’t feel as confident as I did yesterday. Yesterday. YESTERDAY… wait – that’s the song from the MRI! The song literally says “believe in yesterday”.  I smirked, thanked God for another amazing song message- and learned my lesson. Focus on the good, believe in it! and I do!

Today I met with the Oncologist. He sat down with me and shared that he reviewed everything and feels like I’ve responded even better than what’s expected at this point! Wait, what?! He used words like “spectacular”, “incredible”, “responding beautifully”… ahh no stop, say more 🙂 I’m thrilled… I learned to take a breath and not jump to conclusions. He still believes I could have a great response, we don’t know how much is really there or how much is scar tissue until after surgery… and the low CEA is a great indicator that my tumor is really struggling in there (insert evil laugh). So today was amazing (I also got to watch a sweet new friend ring her chemo bell- hi, Amy!), I’m right on track and looking forward to our family vacation next week! My job right now is to relax and gain weight. Thanks, Christmas cookies! Surgery is scheduled for January 23rd! A robotics case with two attending surgeons. I can expect a 4-5 day hospital stay and a 6 week recovery. Pray for the surgery team and for a uneventful recovery period sponsored by Netflix and books.

Overall, I’ve really been doing well- I’ve missed very few days of work and have enjoyed the army of a support system I have. I’ve been thinking about my baby girl a lot. Clearly, the goal when dealing with any type of cancer is to find it as early as possible. I wasn’t that lucky- mine has likely been there a while and is quite locally advanced. I keep thinking about what if I had found it earlier… would I have had to do all the same grueling treatments, would I have a better outcome in the long run? I do know one thing… if this cancer had been found earlier… say a few years ago… we would have of course had the fertility discussion with my team. I could almost promise you, considering the traumatic pregnancy and birth I had with my son three years ago, that we would have decided to not delay treatment to preserve any fertility options. We would’ve decided that it’s not worth preserving the chance for a pregnancy that was already so high risk and a tough decision regardless of any cancer diagnosis. And maybe in that scenario I would’ve only needed surgery, or not so many treatments… maybe in that scenario the survival rate percentage given to me would’ve been higher and maybe in that scenario I live a long life. But guess what- that scenario doesn’t have my daughter in it. I know this was found at the time it was supposed to be. I know she was supposed to be my sweet little girl. And if that means I have to have a larger surgery, go through more difficult treatments, or worse, then so be it. What mom wouldn’t do that for their child? Sometimes I cringe at the “everything happens for a reason” motto, so many awful things happen that can’t be explained- but I do believe this timing is not a mistake. I also really believe that my pregnancy is the reason I found it when I did! If we hadn’t decided to try for another pregnancy that gave me those minor postpartum symptoms leading to my diagnosis. I likely would not have noticed any trouble until much later- leaving my cancer time to grow and spread. Who else can say both their children saved their life? My family is complete and we are exactly where we need to be.

I find that when I force myself to take one day at a time, I do best. Sometimes my mind will wander too far ahead and think about recurrence risk, survival rates, stats… the thoughts get overwhelming. I have a great feeling about this and have every reason to believe I’ll beat it, but I know nothing’s ever promised. Whatever plot my story takes on, I know it will be a beautiful one. I just really want to be the one here to tell it.

XO, Lindsay

sun_pin

Advertisements

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.
This entry was posted in Uncategorized. Bookmark the permalink.

21 Responses to mesh. undies.

  1. kathleen100 says:

    Lindsay we are so impressed with your dedication to living a day at a time – or even a moment at a time. The current moment is all we have. It is life. The past and the future are not. Good for you. Love, Kathleen and Mary

    Liked by 1 person

  2. Francine Frank says:

    You are such a talented, impactful writer! Congrats on making it through what I called Phase I of treatment…the radiation & oral chemo. The last week or so was really rough for me too….our poor bums. The mesh undies…YES! I did not discover them until my surgery and then I took extras home with me from the hospital. They are a life saver! I really love your comments about your daughter. Really beautiful! Hold onto that positive spirit. Be optimistic and believe in your recovery. I believe it makes a difference & it will make the whole process a little less awful to go through. You’re obviously a strong person with amazing people around you & you will get through this! I wish you all the best with your upcoming surgery…total success & a speedy recovery! xoxo Fran Frank

    Liked by 1 person

  3. Ronny Allan says:

    Your last post was quite brilliant and in this one it’s brilliant to hear of your good marker results and reductions in tumour size. Keep going Lindsay!

    Liked by 1 person

  4. The Grunza's says:

    Lindsey, You are simply beautiful. I am so glad you are doing great!. I am glad you got to ring the bell. We will soon. You have again nailed the scene quite well. I see a movie and a book deal for this one. (Come on Ellen give Lindsey a call). Just seeing your smile holding the bell rope brings tears to my eyes. Wow What an experience!! My beautiful wife will be ringing that same bell in 3 more months. We love ya!

    Liked by 1 person

  5. Deidre Sexton says:

    I am so proud of you. I name drop you all the time at every visit to my home-away-from-home off of Quivira.

    Liked by 1 person

  6. Linda Palma says:

    Lindsey, I am totally captivated by your blog. I was diagnosed with ovarian cancer back in June but after a surgery in July, it was determined it started as Cancer of the appendix that metsasized to my primary peritoneal cancer. I underwent another surgery that basically I was opened up and closed right back up because of the extent of the cancer. My chemo begins on January 3. Hopefully, I will have very positive results, too. My prayers are with you on your courageous journey. Thank you & I’m still smiling. We are survivors!!!

    Liked by 1 person

  7. The Grunza's says:

    Happy New Year to your family!

    Liked by 1 person

  8. Shery Batliner says:

    Thinking of you and your family as you fight your battle with this disease we all hate. Your strength and amazing attitude will keep you and your family going. Prayers will be said for you each and every day!!

    Liked by 1 person

  9. Berit Söderberg says:

    Dear Lindsay!
    Thank you for the beautiful letter to all cancer patients you showed a deep insight and understanding for our causes .
    It was a reminder for the medical staffs and caregivers and a fantastic onest witnessing at the same time!
    Good bless you!
    I was just crying me through but thankful for the letter.
    (I myself have MDS a blood cancer disease that is invisible for others. It is difficult to explain to others the brutally of the disease and the lack of energy huge fatigue and worries for the future when “you look so good” and alert”. But I am fighting back and work some days a week Beacuse it gives me energy back!)

    I pray for you and your family wish all the best for all of you!
    A big hug to you ,a brave and beloved mother!

    Best regards Berit ,excuse my bad English I am Swedish 🙋🏼

    Get Outlook for iOS

    Liked by 1 person

  10. Jeannette says:

    Hi Lindsay! I am a Stage III Rectal Cancer survivor. I was diagnosed at the age of 35, and my 9-year anniversary of diagnosis will be Memorial Day this year. I was happy to see your updated blog, I have it bookmarked and figured you might write about now since your first stage of treatment had come to an end and you’d be feeling better! I totally agree with the one-day-at-a-time mentality. It’s a tough thing to commit too, but it does help. I had kind of a horrible mantra that got me through not only my treatment, but also the waiting for follow up CT scans etc. That mantra was “To the best of my knowledge, I am not going to die today, and I’m probably not going to die tomorrow – nothing else matters right now!” Focus on your family, friends and the love that everyone is sending you. Sounds like you are in good hands – I’m looking forward to tracking your progress! I often look back on my experience and think about how so many wonderful things came out of something that was such a nightmare. Hang in there, and good luck with your surgery. I’ll be thinking about you on the 23rd!

    Liked by 1 person

  11. jbeckerdite says:

    Hi Lindsay! I am a Stage III Rectal Cancer survivor. I was diagnosed at the age of 35, and my 9-year anniversary of diagnosis will be Memorial Day this year. I was happy to see your updated blog, I have it bookmarked and figured you might write about now since your first stage of treatment had come to an end and you’d be feeling better! I totally agree with the one-day-at-a-time mentality. It’s a tough thing to commit too, but it does help. I had kind of a horrible mantra that got me through not only my treatment, but also the waiting for follow up CT scans etc. That mantra was “To the best of my knowledge, I am not going to die today, and I’m probably not going to die tomorrow – nothing else matters right now!” Focus on your family, friends and the love that everyone is sending you. Sounds like you are in good hands – I’m looking forward to tracking your progress! I often look back on my experience and think about how so many wonderful things came out of something that was such a nightmare. Hang in there, and good luck with your surgery. I’ll be thinking about you on the 23rd!

    Liked by 1 person

  12. Maureen says:

    Hi Lindsay. So glad you are finished with the first leg of your journey. I will be thinking of you, sending prayers and good vibes your way on the 23rd. I have had the same kind of surgery, so feel free to reach out if you want to talk/write.

    Liked by 1 person

  13. PurpleLiissa says:

    You go girl!! You writing makes me smile and when you are battling Stage IV Cancer – smiles are laughs are always a good thing! So happy that you CEA levels are down and your tumor is shrinking. One Day at a time! You’re doing awesome…

    Liked by 1 person

  14. Lori says:

    Hi Lindsey, I was diagnosed with stage III rectal Cancer at the about a week after you. It was devastating to me as I am a nurse and a single mother with one son. I have made it through the first stage of treatment and now Im in the waiting game. I received the call from my doctor to have my repeat MRI and I have to admit I’m shaking in my boots. Your words have rung so true for me. The scans, the doctor appointments, the treatments, it’s all so scary and I still feel like Im just to young for all this. Good luck on the 23rd. You will do great!

    Liked by 1 person

  15. adrianne ingrid haney says:

    Hi, Lindsey..I am aT2 M0 N0 rectal cancer patient. I’m just a few days behind you on the treatment/surgery path. My oldest daughter and I freaked out when we saw your first post! It was so touching and real. I certainly hope you understand how vital your kindness is to the people who come to you in your job. I can’t go on enough about how wonderful everyone is at my oncologist/radiation appointments. I felt like you about the treatments…Xeloda-lucky it has minimal side effects that can be managed. Radiation-hated having to hold the water in my bladder while having something press on it but not a big deal……until, the last week! Wowza! I had a scare because my images showed thickening of my uterine wall so I have also had biopsies and ultrasounds and a D and C. The uterine wall got even thicker during radiation but thankfully all pathology results were good. My surgery for a permanent colostomy is on the 26th. I will be thinking of you on the 23rd. What a change, what a year, what a glorious life! Blessings to you!

    Liked by 1 person

  16. Julie says:

    Hi Lindsay, Your blog posts have really touched me. You have written out everything that I have thought & felt & am still feeling. I am 36 years old, a wife & mother with 3 small children & I was diagnosed with T2 N3 rectal cancer on April 4, 2016. I did chemo/radiation during June/July & I just finished 16 weeks of chemo only on November 21st. My days are still up & down, but my scans look clear as of right now. Hang in there! You will get through this. I can tell you are so strong & so brave. I hope everything went well with your surgery. You & your family will be in my prayers. ~Julie Monroe

    Liked by 1 person

  17. Pam says:

    Hi Lindsay!
    I am a Kansas Citian too. I was diagnosed with stage 3 colorectal cancer just about a year ago. To the best of my knowledge I am cancer free now, so there is light at the end of the tunnel 🙂
    I had surgery first, low anterior resection and a loop ileostomy. Then I had chemo. In November I had a second surgery, to reverse the ileostomy. That was rough!
    Like you I have been loosing weight, but I was overweight at the beginning of this, so I could afford it. I have to take supplements, particularly potassium, since I am not absorbing nutrients as I should since loosing part of my colon. I am now so nutrition conscious!
    I will have a ct scan and blood work done next month to see how I am doing 6 months after chemo.
    I will keep you in my thoughts!

    Liked by 1 person

  18. YAPCaB says:

    It’s so hard to stay in the present. I hope you are able to do it much better than I can.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s