Journal
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A bit of my Medical Journal {for those facing a similar diagnosis or are simply curious}.
Before November 2017, I knew nothing about breast cancer, just that it was awful and affected way too many people. The things I've learned have been through doctors, websites, others in the fight, and experiments of my own. This page is just to keep track of my cancer journey, for those that might be facing breast cancer or perhaps those just interested in what it’s like to walk this road. Everyone's breast cancer journey (even if it's the same type) is extremely different, so don't take any of this as science. It's just my experience. Many have asked why I stopped writing in 2020. Out of complete honesty, I got really sick of living my daily struggle with hormone suppressant therapy, not to mention writing about it. One major lesson I've learned, as mentioned above - is that every person's journey with cancer is different. Even if it's the same exact diagnosis. Treatments, medications, reactions - every single thing - effects each person in different ways. For me, the "inactive" treatment was the worst. It's difficult to explain how I felt while taking all the meds to kill/keep my estrogen from feeding potential cancer cells. Many women have zero problems with these meds - but some of us - many of us have an entirely different experience. One that makes daily life extremely difficult, because it changes you in to what feels like a different person (severe mood swings, a daily agitated state, depressed - so very different from who I am normally. I beat myself up a lot for not taking continuing the meds, but I remember specifically writing in my journal that if cancer comes back, you cannot blame yourself - living on these meds was making me a miserable person to be around and that wasn't fair to my husband and kids and it wasn't fair to me. Interesting that when the cancer did return - it was not fueled by estrogen. Those meds had barely a 5% chance of making any difference whatsoever. Now they tell me... In the past, cancer treatment has been more like a one size fits all type of thing - but the strides in research are revealing so many fascinating things - including that AI's may not be the best course of therapy for some women. 2022
2021 (Second Breast Cancer Diagnosis)
Medical Journal from 2017 - 2020 (First Breast Cancer Diagnosis)
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- 12.1 Bone Scan (my least favorite of the tests. Felt like I was in a copy machine, but it wasn’t over my head for terribly long).
- 12.4 Chemo Teaching Class, Oncology appointment, Blood work / Labs, Chemo Round #1 which included Neulasta at the end. A patch-like thing that pokes you with medicine. To boost white blood cell count. You leave it on for 27 hours. I do not like this little beast, but it’s essential. {That evening at dinner, things went downhill fast. Kevin said my face lost its color. Spent the next 5 days in bed. Except for when Laura K. had to drag me out of bed to take me to yet another biopsy... {Started taking the following: Prilosec (to regulate stomach acid, will take daily throughout chemo), Claritin (bone pain, etc. after Neulasta), Zofran and Compazine (nausea).}
- 12.6 Biopsy and Ultrasound of second “suspicious” mass. Side effects of chemo at this point are extreme nausea, dizziness, bone pain, headaches and constipation.
- 12.8 Brain MRI
- 12.10 First day I felt “normal” after chemo. Praise!
- 12.11 Oncology appointment: Brain MRI all clear. Praise! Surgeon Appointment #3: Biopsy of new masses benign. Praise! Labs looked great...Disney is a go!
- 12.12 Left for Disney World for PDT (Pixie Dust Therapy). Praise! Praise!
- 12.17 During our last day at WDW, I noticed that my hair was falling out slightly more than usual. This progressed quickly.
- 12.19 Oncology appointment, Blood work/Labs & Chemo Round #2 Breast exam: Mass is shrinking! Praise! This time they extended the delivery time of the Cytoxan and gave me an IV of Phenergan at the end. These two factors helped enormously. I didn’t get bed-sick until Thursday. Nose sores are particularly bad. Saline spray helps. Found Vaseline to be extremely soothing. During the "red devil" chemo drug you hold ice in your mouth to prevent mouth sores. I want to stick ice up my nose.
- 12.22 Results of BRCA Genetic Testing. Negative! Praise! No evidence of BRCA mutation to suggest an inherited risk of breast or ovarian cancer. Great news for my daughter :) Side effects of chemo still the same: nausea, dizziness, bone pain, headaches and constipation.
- 12.23 Head shaving Day with one of my fave people, Lauren T. She held my hand and Lisa D. rocked the razor :)
- 12.25 Started feeling semi-normal. Up and about but not drinking coffee yet. Great, laid back Christmas at home with my in-laws. Really bad headaches and inability to sleep through the night starts.
- 12.26 My buzz cut is patchy but still hanging on.
- 12.29 Sinus Infection. Z-pack.
- 12.31 Best New Year's Eve date with hubbs :)
2018
- 1.1 Almost bald. A few patches left.
- 1.2 Oncology appointment, Blood work/Labs & Chemo Round #3 (with Neulasta, of course). Accompanied by my Dad. We had an awesome breakfast date and I ate a Philly cheese steak after treatment (oops! But it’s what I really wanted. Thanks so much, Dad for letting me sneak it. Secret’s out.)
- 1.9 Finally feeling human again. Date day with my Mama!
- 1.10 Cyst-like thing showed up on my eyeball. Saw eye doctor and seems it's a side effect of chemo. Yay. Options: drain it with a needle or try steroids. Steroids, please! They said it would probably come back anyway even if it was drained. May have to have it cut out later, but I'm counting on it healing ;) No sharp objects near my eyes, thanks. Update: Mid-February the cyst is GONE! Praise!
- 1.11 All but a little blonde peach fuzz remains on my head. Getting closer to Mr. Clean.
- 1.16 Blood work/Labs & Chemo Round #4 accompanied by the whole Mendola/Branco crew! Felt better the next few days thanks to the oral steroids. Still nauseous, uncomfortable and tired, but with a ferocious appetite.
- 1.19 My daughter tested positive for Flu, so they put me on Tamiflu preventatively. They said it might make me nauseous. Wow, that would be a change! ;)
- 1.22 Feeling like myself again. PRAISE!! Good weeks are the best weeks! So thankful for these precious breaks from feeling like a zombie.
- 1.30 Oncology appointment, Blood work/Labs & Chemo Round #5. Finally made it to a less intense chemo drug! Taxol. They gave me IV pre-meds, as usual but this time added Benadryl to the mix - to help prevent a reaction to the Taxol. Made me super sleepy. After being picked up by my dear friend, Kelsey (and her bag of treats!), I took a nap at home. SUPER hungry (from steroids) and once the Benadryl wore off, I couldn't sleep at all. Up till 3am. Steroids, again.
- 1.31 Really good day! Tired but good. No nausea. Praise!
- 2.6 Oncology appointment, Blood work/Labs & Chemo Round #6. Really long nap after chemo & lunch with Steph H. :) Left for Chapel Hill because my toddler was puking and we thought it was the stomach bug. Eeek!
- 2.7 Day at Duke Cancer Center with Melissa. Such a beautiful place. So much information! Exhaustion and leg pain on left side a few days after Taxol. But for the most part, feeling so much better.
- 2.13 Blood work/Labs & Chemo Round #7. During this treatment (towards the end) I started feeling really weird. Hands started tingling and just didn't feel right.
- 2.14 Neuropathy is starting. Pinky is tingly/numb. CIPN = Chemotherapy Induced Peripheral Neuropathy can include pain, burning, tingling, etc. More on the symptoms here.
- 2.15 Exhausted! I could sleep forever. Ring finger slightly numb/tingly.
- 2.20 Blood work/Labs, Oncologist appointment & Chemo Round #8. Taxol infusion was slowed this time to maybe help with neuropathy. Suggested that I use BenGay twice a day for 15 minutes on my hands and feet, preventatively.
- 2.21 Left foot feels a little numb? Maybe?
- 2.22 Headaches are back. Face pain and LOTS of teeth pain. I feel like my teeth are falling apart.
- 2.26 Got to go to the Chemo Bay for my cancer buddy's LAST treatment. I met her on my first day of chemo and she was about 8 weeks ahead of me. She got to ring the bell! So excited for her and thankful to have met her. We also met two others who are just starting out. It is SO helpful to stick together during this wild ride. If you are on this path, find someone ahead of you and behind you - walk the path together.
- 2.27 Oncology appointment, Blood work/Labs & Chemo Round #9 with MY SISTER. Praise! SO thankful that she was with me. Over half way now. Taxol still being slowed during infusion. Cutting back on IV steroids because they may be contributing to my headaches/face pain. Pinky still numb but on and off (praise!).
- 3.6 Blood work/Labs & Chemo Round #10 in the NEW Cancer Wing. They still don't offer pedicures or margaritas, but the chairs are way more comfortable. Bronchitis this week (more antibiotics). And lots of teeth pain. Went to the dentist thinking maybe I had cavities developing - but nope, just a chemo side effect. Note to others prior to starting chemo, get a good teeth cleaning, etc. Other strange things this week: nose is bleeding a lot. Hair is coming back! Peach fuzz, but still...it's at least starting to grow a little (I need to remember to moisturize my scalp. It's crazy dry). And numbness is still just in my pinky and it's not all the time. Huge blessing!
- 3.13 Blood work/Labs & Chemo Round #11 So thankful for the chemo nurse team. A group of amazing women & men that I get to see each week who go out of their way to make us comfortable. #WarmBlankets :) Something strange this time around was that after chemo my body felt really heavy - like I was carrying a ton of bricks. Weird.
- 3.16 Ended back at the docs because chest pain came back, worse. To be safe they did x-rays and a CT scan (just be sure no blood clots in the lungs). All good, just a nasty infection. New, stronger antibiotics. Oh and still lots of nose bleeding - but they said that's bc I have no nose hairs.
- 3.17 Feeling so much better - but teeth pain is still NO JOKE.
- 3.20 Blood work/Labs & Chemo Round #12 So much faster this time. (We usually wait for 2 hours give or take to even get into the chemo chair and always have to wait for blood work results before starting chemo, so that takes time). Really tired today, again. They say the fatigue may be bc of the cumulative nature of chemo and I'm getting towards the end (wooo hooo). I'll take that. :)
- 3.23 So exhausted and teeth pain is outta control :( Incredibly thankful for the friends that entertained my kids this week so I could sleep. It's like no matter how long I sleep for, it never feels like enough. And the meals are still coming. SUCH a blessing.
- 3.26 One of my oldest friends, Ry came to visit and to bring hope to my kitchen and food situation. She cooked nutritious meals and snacks and helped me rid my cooking space of so much crud (crappy food and otherwise) and brought a juicer! Kicking cancer's tail one carrot at a time!
- 3.27 Blood work/Labs & Chemo Round #13
- 3.28 My hair is really growing now. I look like a blonde chia pet. Ch-ch-ch-chia!
- 4.2 Finally returned to the gym for yoga! So thankful to have the energy and ability to stretch this body of mine.
- 4.3 Blood work/Labs & Chemo Round #14 & Oncology Appointment. Good news! My last CT scan (of my chest) looked GREAT! It's working!! Tried to get out of surgery and radiation, but nope :)
- 4.8 No teeth pain this last week. Huge praise! Thanks to all of you that have been specifically praying for that. Some numbness in my feet (mostly toes) - nothing major though. Did end up with strep and back on antibiotics. Both kids had it over spring break and kindly passed it along to me :( And last but not least, still incredibly tired. It's a weird kind of heavy exhaustion. But all in all, I'm ok! Only TWO chemo treatments left! I can hardly believe it!
- 4.10 Blood work/Labs & Chemo Round #15 Exhausted this week. Throat hurts and feet / toe numbness is in and out. Nose bleeding a lot. But overall doing ok! One more time. We got this!
- 4.14 Feet VERY numb & tingly. Especially toes on my left foot. And the hot flashes continue = chemo induced early menopause. Now I know what my mom was complaining about all those years ago when she was going through what they called "the change" ;)
- 4.17 Blood work/Labs & Chemo Round #16, MY LAST CHEMO TREATMENT! This day seemed like it would never come. But I finally got to ring that bell! Praise Jesus!! It was such a bittersweet day. While I'm SO glad to be done with the treatments, I'm going to miss the Oncology Team that I spent quite a bit of time with over these past 5 months - the receptionists, needle nurses, greeters, oncology nurse, and the infusion nurse team. They made the treatments bearable. And all the patients I got to meet and see each week. And the QT with hubbs each week. Precious Tuesdays. I actually wasn't sure if they would give me my last treatment today because of lots of numbness in my feet (especially big toes). But thankfully I was able to do it and finish this leg of the journey.
- 4.19 Sinus infection. More antibiotics (Augmentin). Feet are really numb. Using BenGay every night. Looking forward to these effects waning! Ready for a month off!
- 4.24 My first Tuesday without chemo! Thrilled for that, but my numbness and tingling is changing to pain. Weird. Lots of pain in my feet and calves at night.
- 4.28 Glorious beach weekend getaway with Shawna and SO many fun treats from my Roadrunner fam. They are amazing and have no idea how much their love means to this girl.
- 4.30 Sore throat is back. Feels like a lump in my throat - like someone punched me in the neck. Ick. Probably nothing but sending me to an ENT to check it out.
- 5.3 Dermatology appointment. Apparently chemo can mess with moles, so they are removing them. The needles were surprisingly painful. PSA: wear sunscreen! I love the sun, but the sun does not love me. Time to up my sunscreen usage. And he told me about a different kind that might not drive me nuts (I hate the greasy mess of sunscreen and what it does to my skin). Will share the name when I can find the post-it note (ha!).
- 5.4 Surprised at how exhausted I am. Might be from the new meds for leg pain - or maybe it's just my body telling me to stop acting like it's all healed up now bc it's not. Trying to remind myself to give it the time and space it needs to rest and restore all the damage that's been done. It's funny how I now refer to my body as a separate entity, but the truth is - it certainly feels that way.
- 5.10 I have the best friends EVER. Tonight they threw me a surprise chemo is over party! It was such a fun night of friends and art - my favorites! Thank you Amanda!!
- 5.12 Feeling better, but when I overdo it, it's not good (for anyone involved, lol). Lots of heat flashes, still. But no more neuropathy or leg pain. Praise!
- 5.14 ENT appointment (because of the ongoing sore throats and feeling of a lump in my throat - but most of that has subsided, thankfully!). This appointment was so interesting! The speech pathologist was great! She used a metal rod with a camera on the end to look around in my throat and I was able to watch the whole thing. Kept gagging though so they sprayed my throat to make it numb. Good news is that there isn't anything scary in there. Just a lot of irritation from stomach acid from chemo. #prilosec. This is one of the reasons you have to take it daily throughout treatment.
- 5.20 Hair update: I have hair! I don't necessarily look like a cancer patient anymore - just a girl with a rockin' do. :) Not one that I would have ever chosen for myself, but it's hair - not gonna complain.
- 5.21 I feel like I can say that I feel mostly normal now. The two week countdown to surgery begins (June 5th). There's a long list of things you can't take over the next two weeks. One is turmeric! Weird.
- 6.4 Headed to Duke for pre-op appointments. Very thorough! Met with a nurse, a pharmacy specialist (to review all medications) and an anesthesiologist PA to go over all things anesthesia! He was great and provided so much information.
- 6.5 Arrived at Duke at 7:30am for 9:00 surgery. Had IV placed, met with anesthesia team and filled out paperwork. Before I knew it I was drugged up and rolled back to the OR. All I remember is that there was a LOT of stuff in the OR and I kept commenting on it. Surgery was about 2 and a half hours. When I woke up I was crying and wanting to go home - however, I have no recollection of that. Ha!
- 6.6 So far all we know is that it looked pretty good - the mass was gone and only a couple lymph nodes were swollen. Praise! The surgeon will discuss how many were taken, etc. at my post-op appointment next week. Today, I'm super sore and really tired. The part that hurts are related to the drains - under my armpit and where the tubes are stitched into my skin. Yuck!
- 6.10 Doing a lot of resting these past few days. The drains have me feeling trapped. Still super sore. It feels like I have a softball wedged under my armpit and there is no feeling around it (back of arm is numb). Really praying that this feeling comes back, quickly! My drains aren't putting out much now so I'm hoping they will be taken out this week.
- 6.11 When not on pain meds, this sucks. Just sayin'. Thankfully Ry came to the rescue. She cooked, she watched my kids and she made me stay in bed (after introducing me to binge-watching Netflix). And as usual we reminisced about middle school and laughed till we cried.
- 6.13 Post-op appointment at Duke. The results were great! All cancer removed. Most dead. A bit on lymph node still had cancer. But only 1/12 removed were cancerous. Praise! Doc wants to keep the drains in one more week. The one to the breast wound is actually putting out more than the armpit one and we want to see it put out less before removal. So bummed. They did remove the million stitches though. I have to say that I LOVE my surgery team at Duke. Phenomenal. So glad I opted for this route. Advice: Know your options. Get second opinions. You only get one body.
- 6.16 This recovery is a lot harder than I thought it would be. My wing still feels broken. Hubbs keeps reminding me that I am not broken. This too shall pass. But not being able to lift and/or snuggle my toddler is hard. He is fascinated with the tubes - ugh! Nerve meds are helping with the numbness and I'm starting to get more feeling in my arm area. The imaginary lump I feel like I'm carrying in my armpit has decreased in size - it now feels like the size of a lemon.
- 6.20 Back to Duke. DRAINS TAKEN OUT!!! PRAISE! It hurt for a second, but mostly felt weird. In the scheme of things it was nbd. Starting to feel free again! Still need to be careful - no lifting, etc. My arm's range of motion is not where doc would like to see it. Itsy bitsy spider up the wall 10x, 10x a day. Fun. Can't wait for PT. I want this arm to work right again. :)
- 6.22 Today marks 48 hours since drains came out, FINALLY able to shower again. It had been 18 days! YUCK! Thankful for sponge baths, though. But nothing like a hot shower! Praise! (and I'm sure my family is praising, too :)
- 6.23 Was able to move from button down shirts to normal t-shirts - one arm at a time, but doable.
- 6.29 First PT appointment. Wow. This is a game changer. My physical therapist is incredible. She is not easy on me in terms of the massage - but it's changing things! It's kind of like a deep tissue massage to break up the cording (Axillary Web Syndrome). She's given me exercises to do daily on our marathon trip up north and I'm committing to them. My wing is not going to stay broken. She also gave me two compression sleeves (that she had fitted me for before surgery) to keep on my arm as prevention for lymphedema and protection for my arm to prevent bites, infection, etc.
- 7.1-7.22 Took a hiatus from everything to spend time with family in NY, NJ and an awesome weeklong vacay in Canada with hubbs (work for him, vacay for me ;) Made sure to do my PT exercises EVERY SINGLE DAY. Noticed my arm getting looser and looser. I never thought this would work as well as it has.
- 7.23 PT Session 2. Still as amazed as the first time - such good, knowledgable people and a welcoming environment. I think my physical therapist was impressed with my progress! My range of motion is SO MUCH BETTER! The daily exercising paid off.
- 7.30 PT Session 3 - more massage, more laser and more stretches. Good stuff. Also, no longer needing the nerve meds. There is a slight weirdness under my arm but it doesn't feel like a football anymore.
- 8.1 Had my first appointment with the Radiation Oncologist (opted to wait a little longer to see the doc I wanted). Such an informative appointment. It was helpful to hear all the why's of radiation - with statistical info to back them up. So impressed and thankful for yet another great cancer doc on my team. She did a lot of "drawing" on my body and marked about 8 spots with a Sharpie and covered the spots with clear stickers. These are supposed to stay on until radiation starts. Also did scans at this appointment.
- 8.3 PT Session 4: Today we worked on my next set of exercises. My goal is to get my arms and core stronger before next surgeries. This will be our last appointment until needed again (sniff, sniff).
- 8.14 Random hair note: it's growing like crazy! But not in a cool way. I went from having a sleek 'do to becoming a golden girl in just a few weeks. Yay for hair, but sheesh this transition is going to be interesting. Check out my little hair photo gallery ;)
- 8.21 Dermatology Appointment: More moles need to be removed. Recap: many of my moles changed colors during chemo so doc recommended they all be removed. Three today. Two required stitches. I think my new nickname should be "Stitches",
- 8.22 Got the call today that radiation will start Friday 8/24 with a "dry run". It took a long time to get the "plan" drawn up and issues needed to be discussed with the radiologist to determine which areas needed to be in target zone. So thankful that my Radiation Oncologist pays attention to all these details.
- 8.24 As I was just about to leave for my appointment, my oldest threw up everywhere! They changed my "dry run" appointment till Monday.
- 8.27 Radiation appointment #1: Dry Run. Today we made another mold of me (the last one got messed up). I'll lay in this mold every day to keep me in the right spot. Lots of practicing my breath hold (known as the "Deep inspiration breath hold (DIBH) is a radiation therapy technique where patients take a deep breath during treatment, and hold this breath while the radiation is delivered. By taking a deep breath in, your lungs fill with air and your heart will move away from your chest. DIBH can be useful in situations where radiation therapy is necessary in the chest region, and it is desired to avoid radiation dose to the heart (from www.petermac.org)". Radiation therapists were friendly and kind. Thankful for that, as I'll be seeing a lot of them over the next six weeks.
- 8.28 Getting ready for treatment #1 tonight. Picked up my Rx of Radiaplex Gel to apply after every treatment - of course insurance doesn't cover it, because ya know - radiation is like a tanning bed visit, not a life-saving therapy. Ha! ...So, after I went and got into position, practiced breathing, etc. they took me down and said I needed another CT scan because things weren't aligning properly.
- 8.30 CT Scan and mold re-done. Waiting to hear back...
- 9.5 Got the call that the new plan is finally ready. Dry run this Friday and treatment will start Monday. If the first plan worked we'd be almost done by now. Bummer.
- 9.8 The 30 minute appointment turned into nearly 3 hours! I could not get the breath hold right. It was the weirdest thing because I was always able to reach the threshold before, even if it did take me a few tries. But today was different - I felt like I couldn't physically make my lungs do what they were supposed to do. It was like trying to wiggle my ears. I just can't, no matter how hard I try. After trying many times, feeling like I was going to pass out and taking breaks, even having a snack (thanks to my awesome radiation oncologist), still no deal. Finally, they contacted someone in physics and were able to make some adjustments to the plan. Moving the sensor box allowed me to do an adequate breath hold. I would deny radiation treatment if I wasn't able to have the DIBH technique utilized. I just can't put my heart in the position for possible damage. But thankfully, they fixed it and we will start treatment Monday.
- 9.10 Treatment # 1 a success! Waited FOREVER, but finally got it done. Was able to breathe properly. Nothing really to report - as you don't feel anything from the machine. Feels no different than the test runs. I'll see the doc every Monday and I didn't realize this before - so this made my appointment extra long. But Dr. B is amazing! Such a caring, consistent and detailed doc. Thankful she's in charge of my radiation.
- 9.11 Treatment # 2. Some issues with breathing but got it done!
- 9.12 Treatment # 3. Done.
- 9.13 Was able to get Treatment #4 in, just before they closed down before Hurricane Florence. Very windy here, but that's all so far.
- 9.14 No treatment today, hospital closed. We are doing well here. The storm went well south of us and thankfully, we still have power!
- 9.21 Made it through the storm without a problem but so many of our NC friends were not so fortunate. If you are reading this, please take a second to remember them in prayer. Tough times for lots of people :( As far as treatment goes, I had Treatment #9 today. It's been going a lot quicker - the whole process of getting from my car to the table and back is going much smoother (except on days when there are lots of people or issues with the machine). I think I'm noticing a little bit of pink skin below my scar - but nothing major at all. Praise! 24 left!
- 9.25 Treatment #11. I'm starting to get pink. And tired. :( 22 left... Bright spot though a sweet surprise friend in the lobby. She made my day and also showed me the rest of the Cancer Center - which is really impressive. Thankful for great medical care and ever greater friends.
- 10.19 Treatment #28. It's been awhile since I've updated. SO VERY TIRED. Skin is like leather. Itches like crazy. More later.
- 10.22 Treatment #29. Unfortunately a few of my stickers were ripped off today and they took the skin with them. PAIN! They are supposed to be "rolled" off. Thankfully my sis is in town. Just the pick-me-up I needed. I am SO tired.
- 10.26 Treatment #33 - my LAST RADIATION treatment! Praise!!! Finally done! Extremely tired and very red, BUT the good news is my BFFs from high school fly in today. Yay!
- 11.4 Rough weekend. Who knew that my skin would get worse before it gets better?! It hardly hurt throughout treatment (except for the sticker part) but now - sheesh! blisters that crust over and peel. It hurts to lay on that side.
- 11.5 It's been a year and two days since I found the lumps. You would think that now that the third big part of treatment is over, life would resume as it did before but the truth is that the next stage is just beginning. Lots of decisions to make about next surgeries and meds to shut down my body's estrogen factory. Reminding myself to CHOOSE JOY and to keep my eyes fixed on Him.
- 11.6 Feeling SO much better today. Skin is healing! Yay!
- 11.14 Duke visit today to see surgeon and oncologist. Very helpful. And as always, impressed with Duke. Deciding on next steps. I think I am officially cancer-free! PRAISE!! (I have not had another scan, but based on everything else we know, there is no evidence of disease.) While I am beyond THRILLED, I wish I could say "Yay! I'm done!"...but I'm not. Now begins the tricky part of keeping it from returning which will require MORE treatment. It was surprising to hear that the next phase (hormone therapy/estrogen blocking) is as important as chemo.
- 11.16 It has been a year since my cancer diagnosis. A crazy hard, yet beautiful year of trusting in God's goodness and faithfulness which was so incredibly evident through the love, support and encouragement of my wonderful husband, parents, sister and the MANY, many family and friends who surrounded us. Year 1 down.
Thanks for checking in. I took a little break (2 months - eek!). It's now January 2019. Back in November, I kind of just wanted to be done, done. But the reality is that I started this site to share what this journey is like - all of it. So I am catching up now and will post what the last 2 months have held and do my best to keep it going.
- 11.20 It has been a nice break from daily trips to the hospital for radiation but headed back for a follow up appointment with my Radiation Oncologist today. Skin is healing really well. Will continue to use Rx cream and Duke aloe butter to help with healing. Will see her back in six months.
- 11.21 Still at the docs often – ha! Today was an ultrasound of my ovaries – just precautionary and will help with data on decision for whether or not to have a hysterectomy. Couldn’t meet with the doc to discuss the results because she got stuck in surgery.
- 11.26 Appointment with Oncologist to decide on next steps, oh and a port flush (still have that bad boy in my chest). Bottom line is that we decided to start the Lupron shots in November. We will see how I react. Possibly try them for a year (monthly) and see how I do. I can always decide to have a hysterectomy. Will start daily pills as well, but not until after my cycle stops. Having further genetic testing done to determine my predisposition to ovarian cancer.
- 11.30 Gynecology appointment for results of ultrasound. She found a cyst that she wants to keep an eye on. Nothing out of the ordinary, but something to monitor based on my history. Will have an ultrasound every three months.
- 12.10 Lupron shot #1. Back to the good ol’ chemo bay. Sad to see so many sick people there. Cancer sucks. On the bright side, it was nice to see my old nurses and the humor of a particular one who administered my shot :) I thought it was in my arm. Wrong. Tail. Ugh. But overall, not bad.
- 12.25 Very thankful to NOT be chemo sick this Christmas and to have my family here. It was like a missions trip for them, lol. They took down all the wallpaper and spackled and spackled and spackled and painted!! SO thankful for my parents, sis and nephew (who cooked a Christmas feast!).
2019
- 1.7 Oncology appointment, blood work and shot #2. This time we tried the triple dose (to last for 3 months). I didn't want to see what that needle looked like! It's funny because I've always been such a wimp about needles - even now after having a body part removed. LOL! The needle thing - it's all in my head. It never hurts like I think it will. I will say though, that with this one, the medicine going in did not feel so good.
- 1.8 My hip is REALLY sore.
- 1.9 Hip sore and that whole side of my back sore. Started daily pills today (aromatase inhibitor / hormone based chemo in a pill form).
- 1.10 Ribs on that side sore now, too.
- 1.14 Soreness dissipating but feeling really achy, especially in the middle of the night. Also, crampy during the day.
- 1.22 So thankful that the soreness is gone. I experience a bit of crampyness and joint pain here and there, but overall, I'm good. :)
- 2.19 It's been a bit since I've posted. I have to be honest, the journey lately has sucked. The meds are kicking in and throwing me into high gear menopause. Emotional rollercoaster. Hot flashes. Not sleeping. It's so weird because the emotional side of this is so irrational - linked to nothing external - just my body going nuts from it's lack of estrogen. Some days are ok and others feel impossible. Thankfully, my onc saw me on Friday and let me cry big, fat tears. We are going to back off of the oral medication to see if that will help. Maybe the triple Lupron shot and the Arimidex was too much at once. If we can determine it is the oral meds, there are other ones I can try. The Lupron seems non-negotiable. On the heart side of things, I'm reminding myself that there is power in the Name of Jesus. Joy is not elusive. It is found in Him. Connecting back to that promise as best as I can, while giving myself plenty of grace to accept the fact that It's ok to not be ok. And that's so very freeing. I can't change my hormones (or lack there of) but I can change where I fix my eyes and my heart.
- 2.21 Follow-up ovarian ultrasound. Cyst hasn't changed. Will continue to monitor. Nbd.
- 2.25 Things seem to be improving a little since we dropped the daily meds, but not feeling quite like myself, still.
- 2.27 Some sort of major acid reflux-y situation going on. Ick. Maybe related to the Augmentin I'm on for a sinus infection? On a funny note, I've updated the hair photo gallery some. You can see my transition from Richard Simmons to Bob Ross, here. HA!!
July 10th, 2019 - 6am: It has been several months since I've updated this. It's been a bit of a rough road. I didn't know what I was in for with the hormone suppression. Menopause is no joke (ha!) But God is good. I am just writing a quick update this morning as I leave for surgery. Long day ahead, but I have SUCH PEACE this morning. He is my Rock. Thanks so much for ALL of your prayers and support. I will update and catch up on here as soon as I'm able. :)
- 7.10 Surgery kicked off as scheduled. I was THRILLED to have two special visitors in my pre-op room at 6:30am: my Pastor, Rhonda (who had driven all the way from Greenville that morning!!) and my close friend/previous pastor's wife, Sarah. Wow. Talk about being covered in love (and special faith connections). Things I remember about pre-op: an awe(some anesthesia team, a lot more time with my surgeon than I expected. He drew and drew all over me. Special moments with hubbs. Being awake for longer than I thought I'd be in the actual OR and a sweet, sweet nurse rubbing my arm and holding my hand as they prepped my body. The next thing I remember is waking up to a beautiful nurse that looked just like Denise Huxtable :) That was SIXTEEN HOURS LATER.
- 7.11 Surgery was successful but 4 hours longer than expected = 16 hours. Wow. Settled into my room where I would spend the next 4 days. When I woke up, I remember feeling like my whole body was crushed. Pain everywhere. Exhausted. Thankfully after rest and pain meds, I felt much better. I was blessed to have Laura (my nurse incognito) drive all the way up to Duke and spend all day and night caring for me. Of course though, I woke up to her decorating my room. She made sure everyone on the floor knew it was my birthday week and that I was a queen. HA!
- 7.12 Today was like a party in my room, the birthday suite! Frenchy arrived and pampered me with her bag of lotions, chapsticks, magazines and lavender warming pillow. Better than anything was having her with me. She has the heart of a nurturing mom wrapped up in a best friend's body. Then my sister and nephew arrived. Or should I say, a walking hotdog showed up. She was in a hotdog suit! My kids came to visit, too! That did this mama's heart so good! Little man seemed freaked out at first, but I finally got him to give me a good snuggle and smooches in my bed :)
- 7.13 BEST birthday ever. Who knew celebrating your big 4-0 in the hospital could be so much fun?!? I really have the best friends ever from all seasons of my life: College besties, old besties, new besties, a cancer sister. More on this later...
- 7.14 Discharge day!
- 7.21 Really starting to feel like myself! (11 days post-op)
- 7.22 (12 days post-op) First day going far...back to Duke for post op appointment. The ride was a little bumpy but ok. (Sis fixed that with 90s hip hop). 3 out of 4 drains were removed. One belly/side drain was still producing too much fluid. The plan is to come back in a week to have #4 removed during my appointment with my oncology breast surgeon. My father-in-law gave me a ride back home. His limo service was excellent :) and I was thankful for special bonding time with him. When I got home I was feeling sore and off. Slept for a few hours and really had a hard time waking up for dinner. But nothing can tempt a girl to get out of bed like the Schremp's and their famous, home-cooked spaghetti sauce simmering in my kitchen. As the night went on, the pain got worse. By the end of the night, the area between my armpits and the bottom of my ribs were on fire. Things went downhill from here.
- 7.30 Appointment with my surgeon at Duke to check out the infection. Turns out it was bad. And deep. He opened one incision on the spot and dug deep to find the infection/liquid filled pockets causing all of the pressure and pain. Quite unexpectedly, he admitted me to the hospital directly from this appointment. Began IV antibiotics.
- 7.31 Day 2 of IV antibiotics. Infection Disease team is examining culture and waiting for results.
- 8.1 Day 3 of IV antibiotics. Waiting, waiting,
- 8.2 Day 4 of IV antibiotics. Infection Disease team determines the exact strain of bacteria and which specific antibiotic they will use to target it. Began those meds around 8pm.
- 8.3 Day 5 of IV antibiotics.
- 8.4 Pic line put in so that I can continue IV antibiotics at home. Was hoping to get discharged today...nope.
- 8.5 Today's the day! DISCHARGED!! Woo-hoo. Thankfully Shawna drove me home. She's been my right hand woman this week. Here before 8am so that I can drink Starbucks instead of watery hospital coffee. Now that's a friend!! Will start at home IV antibiotic infusions 3 times a day and surgeon Kev will pack and unpack my wound twice a day.
- 8.7 So very thankful for friends using their God-given talents to bless people like me. Tammy rockin' her nursing skills to help with wound care and covering my pic line in Glad Press n' Seal and a trash bag so that I could shower.
- 8.8 Home health nurse starts to help me with all the things. Wound seems to be doing better. Today is Day 10 of IV antibiotics. Overall, I'm still on the weak(ish) side, can't lift or drive, but I'm starting to see the light at the end of this tunnel.
- 8.15 Last day of IV antibiotics. Finally!
- 8.23 Appointment in the Infectious Disease Clinic at Duke. I had tried to reschedule my appointment with my surgeon so that I could see both while at Duke today, with no luck. BUT...I saw my ID doc and she cleared me to have the line removed. Woo-hoo! As Laura and I waited for the nurse to come in, like magic - my surgeon appeared in the room!! He is so awesome. It was an emotional moment as this summer has been FILLED with bad appointments and this was the first good one. Glad Laura could be there with me. She's been to her share of crappy appointments with me. Surgeon said things looked great - healing up as they should. Praise!! So very thankful for a team that goes the extra mile for their patients. Next up, scar revision (because while they are definitely healing up, they still look somewhat Halloween-ish, especially from where the wounds had to be reopened because of the infection).
- 8.24 Last night I had my first tube-free, drain-free, plastic bag/saran wrap-free shower since July 10th! WOW!
- 8.31 Noticing a hard, painful section beneath my abdomen scar. Ugggggh.
- 9.1 It's amazing how much better my body feels now that all those icky antibiotics aren't flowing through me anymore.
- 9.18 Painful area has gone away for the most part. Praise! Nerve regrowth is a strange process - maybe it was just that. Med management = no fun. It's been a rough few weeks. Hormones suck.
- 10.10 Brain MRI - monitoring some lesions that showed up in my initials scans. Not cancerous - we just need to make sure they don't grow or change. So far, so good! Praise!
- 10.18 Next phase of surgery today. This one not nearly as bad. 3 hours, outpatient. Scar revisions, etc. My infection over the summer had jacked up the wound a bit and left scar tissue behind. My rockstar surgeon also did some fat grafting to help with symmetry :)
- 10.21 While that surgery was "minor"...dude, it hurts!! My sides and belly are not happy.
- 10.26 My first haircut since I had my head shaved 1.5 years ago. Yay! This made me feel like life is getting back to normal. It's still really short, but thankfully Lisa D. did her magic.
- 10.30 Back to Duke to get stitches out. They left the ones that dissolve by themselves but removed all the others. I'm so thankful for the surgery team. Still a few more things to take care of on the surgical front, but we've definitely come a long way. It's been a long road, but at the end of the day, I'm glad we went this route.
- 11.5 Oncology appointment. Bottomline: I need to up my meds. Building up to a better tolerance of the meds that kill my estrogen and put me in menopause. These are the ones I hate - but so far, so good... Adding a little every other day.
- January update: same, same. Meds suck. I hate it. I hate not feeling like myself. Trying to decide what to do. I hate that I have such awful reactions to anything that mess with my hormones or lack thereof. I would love to just bag it and forget this ever happened. But then there's the future to think about...
Many asked why I stopped writing in 2020. Out of complete honesty, I got really sick of living my daily struggle with hormone suppressant therapy, not to mention writing about it. One major lesson I've learned, as I mentioned earlier - is that every person's journey with cancer is different. Even if it's the same exact diagnosis. Treatments, medications, reactions - every single thing - effects each person in different ways. For me, the "inactive" treatment was the worst. It's difficult to explain how I felt while taking all the meds to kill/keep my estrogen from feeding potential cancer cells. Many women have zero problems with these meds - but some of us - many of us have an entirely different experience. One that makes daily life extremely difficult, because it changes you in to what feels like a different person (severe mood swings, a daily agitated state, depressed - so very different from who I am normally. I beat myself up a lot for not taking continuing the meds, but I remember specifically writing in my journal that if cancer comes back, you cannot blame yourself - living on these meds was making me a miserable person to be around and that wasn't fair to my husband and kids and it wasn't fair to me. Interesting that when the cancer did return - it was not fueled by estrogen. Those meds had barely a 5% chance of making any difference whatsoever. Now they tell me... In the past, cancer treatment has been more like a one size fits all type of thing - but the strides in research are revealing so many fascinating things - including that AI's may not be the best course of therapy for some women.
