Feeling Pretty Good! Day 1 Post Chemo Round 2

I survived. In fact, I feel pretty good. So good I teleworked today. I might have been able to go in, but I was worried about surprise GI issues, so stayed at home. When I woke up this morning, no nausea, no vomiting, no diarrhea, no headache, no steroid acne, and little to no fatigue. MAJOR difference from last time. I took my meds (dexamethasone and Zofran) as scheduled in the morning and afternoon. Some mild upset tummy on the morning one, but no worse than taking a multivitamin without breakfast first. At 5pm, I noticed the weird sunburn recall reaction was back on my face, neck and upper arms, and took some Claritin and my Neulasta shot at 5:43 (24h + 10 min past yesterday's infusion time). I ended my 80 hour water only fast today at 5:47pm with 50 calories of applesauce, then all kinds of goodies. Blueberry muffin Lara Bar. About Time Vanilla Protein shake with organic mixed berries. A handful of 10 raw organic macadamia nuts. A yummy crispbread cracker with some cashew butter. OK, maybe not a good idea to pound 800 calories in 45 minutes, but I was just soooo excited to eat. And so far, I feel pretty much FINE. Some chills started at 4pm, and by 8pm I was wrapped up like an Eskimo, but I will take it. (Already googled for answers on why/what to do. Persistent chills in cancer patients are apparently an open research question.)

 

I am still a little nervous about upcoming days 3, 4, and 5 because they are known for being the worst for fatigue amongst chemo patients on this regimen, but when I think back to day 1 and 2 last time, I woke up on day 1 last time so weak I was worried about driving to acupuncture and last time on day 2 I woke up crying in pain from bloating. Maybe it's that I didn't have two surgeries 48 hours before chemo this time. Maybe it's because we changed my premeds. Maybe it's because the standard protocol has dose 1 chemo meds much higher than dose 2. But I really think it was the water fast. I hated doing that. I couldn't even do a Master Cleanse for more than 4 days before, and that at least involved getting calories. I was just that desparate to feel better. You know, pain is real, but so is hope.

 

12 pounds lost in 7 days, 3 of which were muscle. :-( Hopefully I can get it back and stave off more muscle wasting. Not sad at all to see the fat go! Even with all the other tweaks that could have contributed to me feeling better, I think I will definitely be doing the water-only fast again. 2 days before,the day of chemo, 24h post infusion. The 2 days before are to put the healthy cells in maintenance mode, day of is to keep it clean, 24h is to avoid any liver toxicity as the liver works to get the chemo out before the food comes in. I drank 2.2L water during the infusion and also had about 1L of ice chips during the Taxotere and Carboplatin. I think I was pretty well hydrated, especially with some extra saline via IV on top of that.

 

We will see whether the ice chips worked when we get closer to days 6-10 when the oral mucositis started showing up last time. Based on my research, I popped the first ice cubes in 5 minutes before the Taxotere and kept them going through the Carboplatin. I am so HOPEFUL that this round will go better and maybe be a road map for the future. Maybe at some point I will even tell my medical oncologist what I did with the fast. I know. Maybe I should have told her in the first place, but I was going to do it no matter what she said anyway, and I am still really angry about how round 1 went. And I feel better because I did the water fast, so there. I did negotiate my way into being "allowed" to take tumeric honestly so that's good. She has had patients take it with no adverse affects, but couldn't say it was absolutely safe without some full FDA approval. We are getting to a better place, but round 1 will take some serious time to get over. Trying to focus on the future and stay positive about the progress I have already made.

 

I am 1/3 done with the horrible TCHP chemo cocktail! 2 rounds down, 4 rounds to go. Yeah, there are still hard things ahead, but I do feel like I'm making progress. The tumor physically feels smaller. I'm hoping I'll feel up to working again tomorrow, and maybe catching up on some correspondence. (If I haven't emailed you back, I'm working on it!) Maybe I'll even get a workout in this weekend!

 

Friday is also the event at Eivind and Hans. Come one, come all. Celebrating the 25th Anniversary of the American Cancer Society's Look Good Feel Better program. Josh and I are planning to be there at 5:30pm. They will have a live telecast to the main party in Nashville, and Eivind and Hans is the flagship for all of the DC metro area. Love them!

 

Keep your fingers crossed for me on avoiding the GI issues and overcoming my chills!

 

Song for today, keeping it easy. Video is not my fave, but Mariah can still really sing:

 

 

The Wigging (a video), and chemo round 2 tomorrow

Thank you family and friends for your incredibly positive and supportive comments after taking this step with my hair. I had family and friends with me to pick the wigs out two weeks ago (helped by online comments on this blog), and I had family and friends with me during the donation, buzz and wigging. Special thanks to the beautiful, smart, creative, brilliant and fun Julie Percha for shooting and producing this video so I could share the experience with you all. Special thanks also to Hans of Eivind and Hans Salon in Georgetown. Friday, I'll be helping them celebrate the 25th Anniversary of the American Cancer Society's Look Good, Feel Better program.  Good thing I got the wig on day 16 after round 1. Today is day 20 and it is coming out like crazy. Day 14 was the day it really noticeably started coming out.



Wednesday, I will be at the hospital all day. My first appointment for bloodwork is at 9:15am, doctor visit at 10:30, chemo infusion from 11am-probably after 5pm. I plan on doing my ice chips during the infusion. I also decided to follow the research trajectory of Valter Longo at USC and do a water-only fast for 48h before chemo, the day of, and 24h after for 4 days total. It has shown a marked reduction in side effects (esp. nausea and diarreah, to a lesser extent fatigue and oral mucositis). Mixed evidence suggests it might help in cancer cell apoptosis, aka death, including specifically for breast cancer, though maybe not all types of cancers. It won't hurt me, and it maybe will help. Most people (70% of those surveyed) just think it would not be for them. After having experienced round 1, I would do anything to feel better, including only drink water for 4 days straight. If Jesus could do it in the desert for 40 days, surely I can make it for 4.

Other things I have been looking at lately include exercise oncology. It actually may be helpful to do light/moderate activity DURING chemo to help the blood vessels enlargen and better reach the tumor with the chemo. I may walk around the infusion center a little and do some air squats every 15 minutes or so to help. Moderate intensity has a whole new meaning for me these days, especially after I had to nap 4 hours after GI Jane this weekend. Exercise oncology is a brand new, emerging field. Even more so than the nutrition oncology stuff I have been looking at. Still, Duke is studying it. Sloan-Kettering is studying it. More benefits than harm I think. I'm doing it. One of my favorite exercise from a physical therapist whose name I have now forgotten is: "Motion is the lotion of life."  Gotta keep on movin'!

Wig debut at work

Today, I did not feel brave. I worried that my wig would immediately show at work. I worried it would rain. I worried the wind would be bad. I worried it was on crooked, or too high or too low. I worried I would not be taken seriously at an important meeting because people would be too distracted by my wig to listen to my words. I spent extra time getting ready and wore a fabulous bright green dress. People whom I did not know commented on my dress. I worried it was because they didn't know what to say about my hair. People I did know commented about my hair, universally liking it. I did not tell my clients (or the Deputy Under Secretary who noticed) that it was a wig. Eventually, I gave up my anxious smile and replaced it with a real one. My wig does look great, and the only people who knew were my dear coworkers whom I told. #WigSuccess

I am not my hair.

24" donated to Wigs for Kids. Still beautiful. Take that cancer! Thank you to Hans of Eivind and Hans in Georgetown for such an elegant, dignified and fun day. Thank you to my friends and family for loving and supporting me no matter what. I now have 3 wigs, 2 fellow baldies in common, and a lovely hat hand-knit by my aunt. Tough day but a good one. Cried a little last night packing away my blow drier (goodbye old friend, we will meet again someday), but today was all courage and smiles. I even rocked the Miley look for a moment. Video in production, forthcoming. I'm going to the gym tomorrow to attempt GI Jane, 100 burpee pullups. It's time.

Survived the work week, Buzzing hair tomorrow

On Monday and Tuesday, all I could do was get in the bed immediately after work. On Wednesday and Thursday, I saw a group of wonderful friends who began as colleagues and clients. Several more sent their well wishes and regrets. Dinner with an old and very dear friend on Thursday whom I really should have called much sooner. It was so uplifting to see friends both nights. Well worth the energy spent. Sorry for no blog posts this week- I was just exhausted.

I saw the medical oncologist (chemo doc) on Tuesday. Apparently I am their first cancer patient ever to have ovarian hyperstimulation syndrome. Yay for over achieving! NOT. Oh well. We are upping my benadryl to address flushing, with Claritin for 3+ days after. Chemo stays the same. We think it's working. After care stays the same, with additional Ativan as needed. I now own the entire drug store tummy aisle, so I feel prepared for everything. I was a little bit disappointed when I asked about the oral mucositis and ice chips. I was told about the magic mouth rinse, but ice chips were kind of dismissed. I guess that's modern medicine for you. Nothing to prevent, only treatment after you get it. And something that is free obviously couldn't work like $50k+ medicine. BS. I read the studies. I am doing the ice chips. I don't want to be treated after my mouth dies inside my mouth. I don't want it in the first place. This has been known definitively since 2008. Oh well. I will let you know how it goes 7-10 days after this round since that's when they died this time.

I also am coming back to the ketogenic protocol and fasting. I read studies by Valter Longo out of the University of Southern California. He seems pretty legit and backed by science. Mouse studies, including for breast cancer, suggest that fasting 48h before and 24h after reduce side effects and synergistically support the chemo by making the cancer more susceptible to chemo's toxic effects, while protecting healthy cells as they shift into maintenance mode during the fast. I am not a mouse, but I am pro quantified self, and I would do anything to feel less awful this round. I emailed the director of the Chemo-lieve FDA trial but couldn't get in and it's not done yet, so not FDA approved and can't be bought. They offered to sell me another product that is supposed to improve patient compliance with fasting by allowing you to eat a tiny bit without undermining the beneficial effects of the fast. BUT, they will only send to me with my oncologist's permission. I am going to try to white knuckle the fast on my own and if it works, consider demanding the permission and paying for the product then.

There apparently is a lot of resistance to treating cancer as a metabolic disease, in addition to a genetic one. I don't have the genes. BRCA 1 & 2 negative. I'm not surprised about the metabolic angle. I have struggled for years with my weight, sleep, stress, and nutrition. Time to get it right. I ordered some books on Amazon that may help me understand a bit more.

My hair is doing ok. Monday was the last day I washed and lightly blow dried. On Tuesday, it was coming out 1-3 hairs at a time. Wednesday, 3-5. Thursday, 5-10. Friday, 20+. I am not patchy yet, but I have a horse's mane. Tomorrow I am getting my GI Jane buzz cut. Hair I have left will be donated to Wigs for Kids, which gives the kids wigs for free. Locks of Love makes their kids pay, so I opted not to send my virgin hair to them. I also will have my wig cut a bit for my face. My goal is not to cry. I literally came out of the womb with more hair than I will have after tomorrow. I just don't want to watch it fall out and be something that happens to me. By cutting it, I feel like I will feel more in control of what is happening to me and at least some good will come out of it by giving my hair to a child.

Lawyer friends! Secret squirrel client is taking the photo. :-)

Music for today, Ellie Goulding's Anything Could Happen:

First day back at work

Exhausted. First day back at work. Some office vulture already managed to steal a chair out of my locked door office. Amazing. I'm not dead yet y'all, and not planning on it anytime soon. Please wait to pick over my belongings. In any event, I asked for, and am getting, a replacement chair. Thank you very much.
 

Otherwise, great to be back and see my colleagues and clients. Got 5 big things done. My energy tapped out around 3pm. Managed to make it through 95% of over 600 emails, mostly bureaucratic white noise or OBE items. Too tired to take a walk after work though.
 

Tomorrow I see my medical oncologist who is back from vacation. This should be an interesting discussion before we go into chemo round 2 on Wednesday, July 30.
 

Nurses with paws

Trying to take it easy this Sunday. I go back to work tomorrow.

All my human medical team has been great, but when I was so sick at home the past week, my dogs hardly ever left my side. Love is a powerful medicine. I think they made pretty good nurses.

Holly (6.5), Emma (6.5), and Bo (3.5)

Bring on the popsicles, mackerel, and protein powder

Oral mucositis and popsicles

My taste buds started dying three days ago in a blaze of oral mucositis. When I felt like something was dying in my mouth, I was right. My mouth was dying in my mouth. Taste buds turn over every 10-14 days, so they were on the chemo executioner's list next, I guess.

40% of chemo patients get this. Higher dose chemo makes it more likely. Because I can tolerate solid food and have no ulcers, I'm only Grade 1 on the WHO scale at this time. That's mild. Apparently up to 10% of patients end up at Grade 3 or higher - no solid food!!! That is severe! It could be worse, and I'm so happy it's not. I'm not going to rush out and reach for a hard salty pretzel, but I ate a banana without pain, so that's good.

Sucking on ice chips 30 minutes prior and during the infusion could potentially prevent this. In medical lingo, that's "ice-chip cryotherapy prophylaxis." (And you thought legalese was bad.) It hasn't been studied in my type of chemo specifically, but close enough for me. This page talks about a study in which ice-chip cryotherapy significantly reduced the incidence of severe oral mucositis. Only 14% in the ice-chip group got severe oral mucositis, compared to 74% in the control group. I've had a hankering for popsicles, so I think I will be giving this a try. I really nerded out over this article, which I thought was great. There's also a study that suggests rhodiola algida could help, but I've already been admonished about my previous level of supplement-taking, so I don't think I'll even ask about a new herb. I'm pretty sure I can get away with ice.

The bizarre excessive salivation that showed up around the same time is apparently an unrelated issue; that is actually symptomatic of nausea and at the time, we thought the Zofran was making me bloated because the ovary hyperstimulation nonsense hadn't been figured out yet, so I had no anti nausea meds there for a few days. Oh well, past is past.

Dysgeusia or Alien Taste Buds

Mucositis has been linked to dysgeusia (distorted taste) and hypogeusia
(decreased taste). More medical lingo for you. I definitely have distorted taste. Between 44-76% of chemo patients get one or the other, according to this article. Glutathione helps if you're not on a taxane-based regimine, which I am (docetaxol), so basically I have nothing.

Of the cocktail I'm on, this article suggests carboplatin is the likely culprit behind my weird taste sensations. Supposedly everything becomes metallic and bitter. Makes sense since Carboplatin is made from platinum. I become ever closer to becoming a female super-hero, perhaps a female Wolverine (Wolverine gets his start when his bones are replaced with adamantium, maybe mine begins with platinum. Or maybe it was the titanium clip they left in my breast as a biopsy marker.)

Wolverine's daughter, Wild Thing

Patient-centered books talk about how to improve taste when you have chemo, like a little bit of salt or sugar will make everything lovely. The exception to this is The Cancer-Fighting Kitchen, which is really good and a must-have for any cancer patient and was a gift from a former colleague and lovely friend who sent it to me before I even knew I needed it. Let me be clear, I do not have just less taste buds, I have ALIEN taste buds. I blame carboplatin. Good thing carboplatin has a reputation for melting away tumors. I guess it can stay. The side effect dysgeusia is really trippy though.

Water tastes completely foul. Cranberry juice tastes kind of like water. A banana feels like a banana should feel, but it actually tastes more like a mushroom. Red meat tastes horrible. Peanut butter tastes like paste. Chocolate was a disappointment. Bread tastes happily like bread. Cucumber tastes kind of right, but not really. I haven't tried everything yet, but I do feel like a toddler learning about solid foods for the first time.

Josh and I went to a Japanese restaurant the other night. They had a bunch of specials on strange vegetables, so I ordered 7 small dishes as my dinner. I had no expectation about what they would taste like, which we thought would help. Japanese gobo was not so bad; eggplant tasted like cat vomit smells. Mackerel with lemon was delicious. Kind of like an unspecified pie, with a crispy flaky sweetness I just couldn't place. It really is that weird.

Today I went and cheered on the CrossFit Balance Capital Affiliate League team, the "Balance Beams." It was amazing to see so many friends, coaches and clients again. (It was a little hard on my self-control not to want to do a work out. I deliberately wore flip flops in an attempt to self-regulate.) One of the girls left me a gift bag that had some protein powder muffins. I tried them tonight - AMAZING. Unbelievably amazing. I cried I was so happy to eat something that tasted so good. I am getting the recipe and making them ALL THE TIME. Also, I was gifted a tub of the Vanilla About Time protein powder by another friend, which I tried later in the evening, and it is DELICIOUS. If all I eat are popsicles, mackerel, and protein powder for the next 16 weeks, I am going to be one lean, cancer-fighting machine!

Today's theme song, Kelly Clarkson's Stronger. I am so glad to have the past week behind me. There were many times when I really thought I wasn't going to to make it, but here I am anyway. I'm feeling better. I am supported by family and friends all over the world and right here in my city who love me, want the best for me, are cheering me on, and are praying for my health. In spite of cancer, I feel so blessed. Perhaps because of cancer, I can see how truly blessed I have always been. To everybody I saw today or in the past few weeks who gave me a hug or a high five or sent me a text or even sent a feel-good thought my way, THANK YOU. It really does help.

What doesn't kill you makes you STRONGER!

I feel SO much better!

I am BACK.

I feel so much better. I weigh 6.5 lbs less this morning than yesterday. Talk about a lot of water. Still a bit bloated but entirely tolerable. All of my tastebuds have died and shed like dead skin. I have no idea what anything is going to taste like before I put it in my mouth, like a baby first learning about lemons. Weird, but I can handle that.

Also, my hair follicles are starting to be sore, like I was in too tight of a pony tail or braid. For the dudes, imagine a sunburn on your bald head. I scheduled my wig cut and buzz for Saturday at 10am. Hopefully I make through the week with hair. Day 14 when it is supposed to begin falling out is Thursday, and Day 20 when it is expected to be gone is the following Tuesday.

Good news I neglected to share on the blog amidst all this madness:

NO BRCA! Not 1, not 2. Hallelujah. No double mastectomy! The other genes should be done end of August. We found out in time to avoid having to do pregenetic diagnostics on the embryos, pretty invasive stuff for little guys.

The embryos. We got 8 of EXCELLENT quality. It is amazing the drop off, 41 follicles, 29 eggs retrieved, 20 mature eggs, 17 eggs fertilized through ICSY, 17 developed, and 8 turned into high quality embryos. 8! I am so grateful. I seriously want to start naming them... all 8, both boy and girl names. After Greek and Roman gods and goddesses, Viking warriors, etc. Names of strength, hope and grace! We will have a future together someday.

I went to acupuncture today and it helped, and I am going to get an IV drip at 3 to make sure I am hydrated and ready for the weekend. Not everything is peachy, but looks like I am out of the woods!

Today's theme song, Katy Perry's ROAR! 

(Thanks Stephanie!)

Well, punch me in the ovaries!

And I mean that as a good thing.

After calls and questions to Sibley, I went back to Shady Grove Fertility, where they determined that I had significant fluid in my ovaries that needed to be aspirated (ie, poked with a needle and let the fluid drain out). I needed someone to drive me to the surgery since it was total intravenous sedation. I had already told Josh he could head out to a big appointment, so he was out of pocket and didn't even know what was going on. My friend Jay was luckily available, drove, and stayed with me through the surgery. Josh arrived in a panic moments after I came to, but it was all good.

Going in, I almost couldn't even make it to the OR, I was so nauseous. Somehow it all came together though and after an hour of being under, they drained 3.2 liters (108 oz!) of fluid from my body, 5 pounds of water weight, gone instantly! Nearly a milk gallon of fluid, gone!!! The Shady Grove team did amazing. I am so grateful.

I woke up from surgery elated, feeling so much better. I ate Saltines, my first real food in days, and they were like the best things I have ever tasted.

No wonder I felt horrible before though, right? I feel a little bit guilty about slave driving my intestines these last few days with all the drugs I gave them. It wasn't their fault. :-( I am going to try to feed them good things and hope they are happy again quickly. What an in-depth, crash course I have given myself in gastroenterology though. If anything does come up, I feel more confident I will know the right thing to do first off. It also makes me more confident that chemo round 2 will be bearable, even if they change nothing. 

I have since come down off my post-surgery drug- and saline-induced high and am ready to sleep this off. Can you believe I have survived 3 surgeries, chemo and an ER trip in the last 10 days?! Me either. You do what you have to do in order to survive. You fight. Cue up some Christina Aguilera and dance.

It will probably take a week for the last bit of bloating to go away, and I am supposed to take it easy until then. Nurse Chelsea also reminded me that my blood cell counts are about to start dropping off (days 7-10 post chemo). I also have one week remaining of rest rxd by the interventional radiologist for the port. Things are lining up though. 

After next week, I MIGHT actually be able to do a real work out before chemo #2 on July 30! More than anything, more than solid food even, I miss being able to move and push and strive physically. I miss how working out leaves me feeling strong and healthy. I can't wait.

I have no expectations about how I will feel tomorrow. I hope well! But if not, I will still fight on anyway. The image below was my inspiration this morning and all day today for staying positive! Honestly, I hope today ends the chapter on what has been the hardest week of my life. Bring on the next round.

More of the same, progress questionable

I felt better this morning, but then started getting worse again in the afternoon. I woke up around 11am after the long ER visit, took Miralax, and measured. Only 6" of extra bloat around my waist. I vomited a little, but it wasn't bad, so I let it go without meds. By 2:30pm, the bloat crept back up to 7.5" and I had some Mylanta. By 6pm, after 30 minutes walking to try to improve, it was at 8". Yesterday it was at 8.5", although I did not start measuring at the peak- I only thought of it later. At 6pm, I took more Mylanta and Miralax. At 8pm, still at 8". Around 8.5"/9", I believe I will start vomiting again from the pressure and pain, and I would very much like to avoid that. I tried some buttered prune juice at 8pm, and now I am waiting. Hopefully things go in the right direction.

I feel like I can still smell the horrible chemical odor of the chemo drugs, like they are stuck inside me and I can never escape that hospital scent. I no longer get bitten by insects. I walked through a cloud of gnats on my walk today, and they hastened to get out of my toxic path. This stuff is no joke. Josh still gets bitten. The other weird walk observation was after I smelled someone grilling hamburgers, I wanted one so bad I could cry. My mouth will not stop watering three hours later, so much so I have to spit every 15 minutes not to get sick from swallowing, even 3+ hours later. I have resolved to appreciate every little bite I actually get to eat and enjoy going forward. I miss spicy food and meat. Even water tastes gross now. Someday, it will be normal again! Next July, I want a real picnic to celebrate this being over.

In my internet research trying to figure out how to feel better, I came across these helpful and interesting links:

rocking chair trial - 60 minutes of rocking chair action may help prevent post operative ileus (temporary bowel paralysis after abdominal surgery). I have a glider on the front porch I will be sitting on tonight!

Gastrointestinal Complications - for healthcare professionals, but helps me understand the order of what we are trying and why. If the prune juice doesn't work, I will be trying the magnesium citrate next. It is apparently an unstoppable force, but I am pretty close to doing anything to feel better. It's already in the fridge chilling.

Nausea and Vomiting - also for healthcare professionals. I would rather vomit than feel how I do now. At least I know I can ask for other drugs. Apparently (from other internet sites I read today), Emend has fewer side effects than Zofran, but is expensive and not always covered by insurance. Maybe we can try. I bet Emend is still cheaper than an ER visit. Surely BCBS will understand, and I've been so healthy all these years. I paid my dues.

Constipation Home Remedies - Dr. Bishop did strongly recommend a glass of warm prune juice with a tablespoon of butter. I tried it.  Someone else on this page said it took effect within 1 hour. Still waiting and hopeful.

Infographic on What Normal Looks Like - hat tip to Q and the 2013 Magnus Athletes Camp. Just a reminder of how things should be.

If I feel bad in the morning, I am just going to go to Sibley and refuse to leave till I get some help and pass this out of my system. I don't think I can survive the weekend like this. It's been 9 days since I was normal, before all the surgeries and chemo started. The IV drip last night helped. I could hear my insides start to finally gurgle and move, but I think it wasn't enough. I feel like if I could get enough fluid into the upper/middle part of my digestive tract where things are stuck, it might lubricate them enough to get them to work on their own.

This is NOT what I expected to be blogging about, but maybe it will help someone in the future, instead of having to forge new ground like it feels to me right now. Trying to stay positive and have perspective. Anyone else remember the Oregon Trail game? We are pioneering my patient experience here!

Went to the ER, ok now

Last night I started feeling worse. My waist increased to 9" bigger than normal with bloating. The Mylanta was no longer even doing its little bit to help. The salty taste in my mouth became nearly unbearable. I still had yellow, mustardy diarrhea, and I started vomiting again. My heart rate also felt high.

I was really worried the high potassium test was not a lab error since I was getting worse, so I called the doc on call. With a high potassium reading earlier in the day and feeling worse, she told me she couldn't rule out potential heart failure as a risk, and to go in and get retested. I went to the ER at Sibley. Based on my limited prior ER experience, I liked it better than GW (Sibley seemed cleaner, less chaotic) and about the same as INOVA.

The nurses were awesome- Linda, Marta, Janice, and Landis. Linda took my vitals and then took me back. HR 123, BP 118/72. 

While they were flushing my port, I vomited. Luckily I had enough time to ask Josh for a container and didn't make a mess.They gave me Reglan to help with nausea. It also makes you sleepy. I stole the pillow Josh had brought for himself while my poor husband tried to sleep in a chair by my bed as the sounds of other people vomiting and moaning filled the ER.  I got a whole bag of saline, which really helped. I almost asked for a second, and maybe I should have. They do think I was a bit dehydrated. They also x rayed my abdomen to look for a bowel obstruction. I had a quick call with my Uncle Dan before going into the ER, so I felt ok why they were doing it and that it wouldn't be too much radiation over my reproductive organs.

The x ray showed fluid/gas in the abdominal cavity. Physical examination showed no bowel sounds. Blood work was fine. A little low on sodium, but not way off. Apparently the high potassium can often be caused by lab error when they essentially overshake the sample and the blood cells break apart (hemolysis), spewing their potassium rich contents into the rest of the sample and contaminating it. Whew. No heart failure coming.

The ER doc recommended a liquid only diet and Miralax till things get moving again. The rice I had been eating, along with the rest of the BRAT diet recommended to me for the diarrhea, could be making things worse because it slows things down up top. My heart rate was down to 98 and BP close to the same by the time we left. Still not my normal, but better.

We got home around 3:30am, after walking into the ER just after 11. I got a follow up call today from radiology confirming that it looked like gastroenteritis or ileus, but there was no obstruction.

Nurse Chelsea also called to check in. We talked about the previous evening and the advice given. She thinks my medical oncologist Dr. Smith will want to see me before my next appointment with her for chemo on July 30. Chelsea also offered that we could do an iv drip the day after or two days after if I am feeling bad next time too.

Today, I have mostly slept and finally tried a vanilla Ensure. Not too bad. I am going to be super skinny post chemo if this keeps up.  I am hungry and headachey. Trying to drink water. I am only 7" bloated but it is still uncomfortable. No work today obviously. I hope I feel well enough to go tomorrow.

One thing I really appreciated at the ER was as I was walking out, one of the nurses told me, "Make the doctors help you." It was so knowing, sweet, and compassionate. Everyone, even doctors I guess, can get desensitized by routine.  It was really helpful to have that nod of confidence in continuing to be an advocate for my own health. Hopefully things continue to improve!

Day 4 & 5, the horror

Day 4 post chemo I woke up in pain from extreme bloating. I had very little energy. Nothing seemed to help. I've been trying to walk 10,000 steps a day for some kind of exercise. Less than 3,000 on Day 4 because I was so weak and tired. Gatorade, chicken broth and a little bit of rice was all I had to eat. I switched from Zofran to Ativan at 3pm because they think that might be contributing to bloat. I also tried adding Mylanta, with a little success. I also developed a headache.

Day 5 I woke up in pain and spewed bile from both ends simultaneously. I had some chicken broth and kept it down. I didn't bother with meds. I went in for a sick visit with the nurse practitioner, Dr. Bishop. I don't think they know what to do with me. My potassium levels are high, so she told me she would call in a prescription to bring it down and that it was very important. Josh drove me straight to CVS since I was too weak to drive. The pharmacy said nothing had been called in. It's about 40 minutes in traffic, so plenty of time. I called the office and no one could find her and she hadn't entered the order, so no one else could do it either. The receptionist told me she would have Dr. Bishop call me. She didn't. 90 minutes later I called the other nurse. They had talked about me and decided not to give me the potassium reducer since it would make my other side effects worse. Instead I am supposed to go in tomorrow for more blood work. I have nothing for tonight. I am afraid to take any medicine because it seems to be making it worse. I am feeling pretty frustrated and alone.  If I can't tolerate the standard course of chemo they will reduce it, but I feel more sick from the anti nausea meds than anything else. I don't want to take any chances on cancer coming back. Still, I have never felt so sick or weak in my life. I even had to rest on the way from the elevator to office door. My purse feels heavy. I hate this.

Chemo is like a bad picnic.

I feel like I went to a bad picnic. Where somebody's kid gave me flu, the potato salad sat in the sun a little too long, and  I got a little bit sun poisoned and hungover. This post may involve too much information for some sensitive readers, but I feel compelled to record my observations for the sake of science and the benefit of future patients who might read this.

I am three days post chemo round 1 of Taxotere (docetaxol), Carboplatin, Herceptin (trastuzamab), and Perjeta (pertuzamab). I have 5 rounds remaining of the full cocktail, then I drop to 12 rounds of Herceptin only. We wrapped up round 1of the full cocktail around 6pm on Thursday.

The day of, I felt pretty good but noticed some redness in my face, neck, shoulders and arms around 8pm. Like a sunburn.

I woke up in the morning on Friday feeling rough. I took a hot bath and started the anti nausea RX and homeopathic diarrhea meds. I then went to acupuncture for an hour and left feeling a bit more fortified. We added some preventative needles in my hands and feet for possible neuropathy side effects. I slept for an hour with needles vibrating gently under a mild electrical current. It surprised me that I felt so much better when I got up.

I really wanted to go to coach my usual Friday evening CrossFit classes, just to be as normal as possible and be surrounded by friends. I pretty much took it easy till it was time to go and made it through all three classes without having to demo, which I can't since my port side shoulder is out of commission. It was great going, but I think it will be too much in the future for the week of chemo.

I sometimes need to remind myself of what I am going through. I  did just go through 20 days of injections to produce hormones that felt like 4 years of periods and a pregnancy in that short time, surgery where my ovaries got jabbed with a needle 29 times, another surgery to stitch a medical device to my pec wall and lace a hose through a central neck vein, oh and then chemo. It was a lot. If I am tired and sore, there is a reason.

Around 9pm on Friday, I felt worse. The sunburn seemed to be getting more intense in my face, neck, and chest, although it had receded on my arms. A lot of associated fatigue. I called the doc on call, who said it was a rare but not life threatening phenomenon where your skin recalls a sunburn from ages ago. Mine was probably April  11 at the MAAC CrossFit competition. I asked if I could take Claritin and she said it wouldn't hurt and it might help with a histamine response. I was also glad because it was time for my Neulasta shot and there is some internet lore going around that it helps prevent bone pain. So much anecdotal evidence it is actually being studied.  Glad I knew to ask and had already done my research. I took Claritin and the shot and felt a lot better.

Before bed, I decided to switch from the homeopathic meds, which were mostly working, to 1 tablet of Imodium. Mistake! Things have since gone in the opposite  direction, with a lot of pain and bloating, and not enough movement. I keep walking and drinking my ginger tea, so that is helping. I have never really had digestive troubles in my life, so this is all new to me. I would not wish tummy troubles on my worst enemy.

Saturday was not horrible, but I didn't feel good either. I could hold out till about 7.5h before the anti nausea meds, whereas on Friday I wanted them at 7 hours. I am supposed to take them every 8. By Sunday, I slept through the night and made my morning dose at 9h without too much angst, but I just needed to turn the lights out and sleep the rest of the day.

I tried to eat what I could but rarely made it above 1000 calories. I am trying to eat healthy, but I discovered a Reeses Peanut Butter Cup is about the only thing that covers up the chewed up taste of Pepto. Small meals really helped. I am worried about getting enough protein. I may order the Vanilla or Birthday Cake protein powder from About Time.  Normally I love chocolate but I think the taste might be too much. Even an apple tasted a bit funky the other day. I would love a leaner body composition out of this, I just don't want to be weak and lose all the muscle strength I worked to gain. Sigh.

I just want to feel good and strong and healthy again. Here's to hoping day 4 is better.

First day of chemo in the books, hallelujah!

We got to be in the coolest light therapy room. I felt like I was more in a club than a hospital. Bring on the chemo cocktail!

All drugs were administered individually and slowly through my new port, which did not hurt at all: anti nausea, steroids,Taxotere, Carboplatin, Pertuzamab, Herceptin. Only Carboplatin made me slightly nauseous. I brought ginger drops, other candies, and chips, but I hit it on the dot with the tea I brought, Earth Mama Angel Baby Organic Morning Wellness Tea. I had to negotiate vitamins with my oncologist, but I figured if a tea was ok for pregnant ladies it was fine for me. I had nurse Chelsea look at all three types of tea,  and she had no complaints or objections.

After it was over, I was very careful about taking my drugs. I feel pretty good. A little queasy but fine. Such a relief to finally have started.

Port installed so I am now part Terminator

With my new equipment installed, I now feel like a female Terminator (Terminatrix?). Look out cancer!

 

 

They gave me a "Power Port," which is supposedly a more advanced model that can take the high rate of injection speed needed for radioactive dye, like I had for the breast MRI and PET/CT. I will probably have those again, so thanks to Dr. Johnson for thinking ahead. It is also lightweight, "cosmetically appealing" according to the website, and it will reduce the need for needle sticks in the future. The more it is used, the less the needle will hurt there. I still have a prescription numbing cream called Emla for tomorrow's chemo though.

 

 

There is very little bruising. It hurts less than the egg retrieval procedure, but it still hurts, so I am pretty happy I started on hydrocodone for pain from yesterday's surgery and Zofran for nausea as prep for tomorrow's chemo. Thank goodness for that. The worst spot is where it loops over my collar bone on the way to the vein. If he had put it under the collar bone there would have been a higher risk of "pinch off," essentially getting a kink in the hose. He may have called it something else I think but I can't remember and forgot to write it down. Super low body fat folks sometimes get other ports under the collar bone, but I have enough fat to avoid that so better odds for me avoiding complications. Surprisingly, the pocket for the port doesn't hurt much at all. It's kind of burning and sore, but not real pain pain, if that makes any sense.

 

The threading of the catheter through my vein is unpleasant and weird but not painful. The termination of the catheter in my neck is a little twingy even through the hydrocodone. It feels weird and tight to turn my head away from the port because the muscles in my neck and attached to the collar bone are tight around the incision and the new catheter under my skin feels odd. Basically I am trying to remember to turn my whole body rather than just my head to look. Maybe the catheter gets more bendy as time passes. I have iced it all day, and that has also really helped with pain and bruising. In about 2 weeks, I will be able to use my arm for anything above chest level. Until then I have been advised not to lift anything heavier than a coffee cup with this arm. Once the incisions heal, I can do whatever I want except play tackle football. I might have to think about whether I can roll atlas stones and strongman kegs over the other side. I am still a CrossFitter after all!

 

I think Dr. Johnson did a really good job. He put the big incision exactly where I drew the marker, and I am so grateful. He remembered and mentioned the dress he knows I want to be able to wear without a scar showing after all this is over. There are two incisions, one in my neck, and one in the fold of this weird side booblet that I have never liked and constantly try to keep tucked away behind clothes. It took him longer than a usual placement to thread more catheter up and around, but I'm so pleased. When the port comes out, I may ask for some scar revision especially up by my neck, but I think if I wear a big chunky necklace, no one will ever know. I actually had a mole removed there years ago, and he was nice enough to put it pretty much right back on top of the older scar after our discussion. As soon as the liquid bandaid comes off, I will also wear a 50 or higher SPF sunscreen to help the scar fade to white and be less noticeable. See photo below. Not bad for same day! Given all the poking and threading that had to be done, I don't think I could have had a more perfect job from Dr. Johnson and his team. Less bruising than my biopsy even. I feel so lucky to have such good medical care.

 

Incision #Selfie. Note the collar bone and upper outer quadrant of breast. I don't think that will ever show. The slight redness is from the ice pack I just took off, but no big deal.
Nice spot, Dr. Johnson!

 

I finally worked up the courage to share my story on Facebook, and it was just what I needed today. I got texts, posts, emails and messages from friends old and new. I felt so loved and supported. I read them all the way down from my prep room to the OR till the last possible second before they took me in. I just can't say enough how much that meant to me and how very much I needed all of that today. From the bottom of my heart, thank you. 

 

Other photos from today:

A kiss good night and good luck!

Rollin!

I've got a ticket to ride!

Last round of consent forms with nurse anesthesist Mike, an all-round kind-hearted fun rockstar. Not pictured, other OR team members Javan, "G", Pat, and another really nice guy whose name I can't remember but I think did radiation tech for the mid-surgery x rays and also helped me get a lead blanket for my pelvis to avoid unnecessary radiation that had a small chance of hitting my reproductive organs. Dr. Brian Johnson also not pictured, but imagine a smarter, nicer, less wimpy and better-looking Dr. McDreamy, and that's about right.

 

Last shot with Javan as I got wheeled into the OR!