Style Party

I've been really struggling with what to do about my hair. It's going to fall out. Some might stay in. There will certainly be thinning in parts and patches that are empty. But when will it fall out? No one can tell me. Soon, is the best I've been able to determine. Probably within the week is a likely bet. It will start with hair on my pillow or on my shoulders and then it will start to come out in clumps. I do not support clumps.

The chance that I MIGHT keep SOME of my hair is not a soothing qualifier for me. 

I already have thin hair. I've been told that my situation is called Female Pattern Baldness. Dumb. 

I've been using Rogaine since my 20s and I hate it. It makes my hair crunchy in the morning and it's one more thing that I have to do when I really just want to go to sleep. But, it does help me look like a normal human, which is the whole point. 

Losing even 20% of what I have will basically make me look like a wet chihuahua, but with slightly less chin hair. Not NO chin hair, mind you. I'm not delusional. But certainly less. 

What I wanted to do was to keep my hair as long as I could. AND  I wanted to avoid the clump-scalp evacuation from commencing while I'm washing my hair one morning, getting ready for work. I've heard that this happens to a lot of women. And then you're in the terrible position of determining if you should dry your hair as normal, watching the clumps blow around the bathroom or call in late to work so that you can quickly shave your head. I wanted to be in better control than that. So, I'm bald now. We had fun and made the best of this stupid, shitty situation. 

Oh, also, the next time we use our fire pit we may get complaints from neighbors. It's full of hair and it's going to be SMELLY. 

Anyway, please enjoy this collection of photos documenting the process. I hope they bring some levity to your weekend. 

 

 

Bad-Tempered Lethargy

This is not a cheerful post. I usually try to have an amusing attitude towards my health, but I'm too tired.

I had energy and spunk on Thursday. This was me during one of my wandering adventures with the I.V. pole. Fun, right?

Now, though, I just feel blah. It's day 4 of treatment 1 and supposedly, from what we were told in preparation, days 3-7 are the worst. I must say, if this is the worst, I've really lucked out. I haven't thrown up at all. I haven't had any horrible allergic reactions to the drugs. There were no emergency trips to the hospital. I just feel like I have the flu. 

Yesterday, I had an unpleasant headache, but I did talk to the triage nurse and learned which OTC pain relievers are safe for chemo use. It turns out that my migraine pills and Tylenol are both fine to use and I am currently without skull pain. 

Since Friday afternoon, I've had a low-grade fever flirting with but not reaching the 100.4 number that would mean consulting the on-call staff.  Anyone who has had a fever knows that it makes you tired, irritable, and generally not a lot of fun to be around, which is what I expect for myself for the next 3 days.

The nausea has been persistent since yesterday morning. Following directions, I'm eating small meals, trying to have at least a few oyster crackers pretty regularly so that my stomach isn't empty. I'm still keeping food down.

So, all things considered, it could be worse ... but I can think of lots of ways that it could be better. 

Chemotherapy Day 1 - A Timeline

8:29 - The phone rings. I answer, pretending that I wasn't still asleep. It's my Oncology Nurse reminding me to bring my prescriptions to infusion. 

8:45 - Google "What should I wear to Chemotherapy?" 
Answer: "The American Cancer Society recommends dressing in layers. Dress comfortably in sweatpants or yoga pants. Choose light materials so if you sweat you won't feel sticky. Wear a low neck or V-neck shirt so nurses can easily reach port to administer chemo. Bring an extra shirt in case you sweat through the first." Gross. I don't sweat.

9:10 - Send a sarcastically complaining text to my sisters-in-law, who helped me clean out my closet this week. 
"Oh my gosh! Where are all my clothes? I don't have anything ill-fitted and outdated to wear to chemo!"

9:15 - Apply Lidocaine-Prilocaine Cream to the port site to help decrease the pain from the from the infusion. 

9:58 - Make fun of Scott for bringing a wide-brim hat to chemo.
"Do you think it's going to be really sunny in there?"
"It's in case they kick me out and I need to go for a walk."
Acknowledge that it's a real possibility that someone will kick Scott out. Compliment him on his forethought.

10:00 - Arrive in the infusion room and get directed to chair #6. Settle in for the next 4 hours. 

10:02 - Notice the lady across from me who is crying and the man to the left of me who looks to be in his early 30's. Get sad. 

10:15 - Start sweating. 

10:25 - Listen to a nurse trying unsuccessfully to get an I.V. started in the elderly patient next to me. Listen to her telling the woman that she might be a good candidate for a port, so they have better luck with vein sticks. Notice the patient is starting to cry. Get mad. Hear the patient wincing and see her feet twitching from the pain. Get anxious. Offer her my hand to squeeze. "Absolutely not. But thank you." Feel stupid.

10:27 - See Scott offer my elderly neighbor a trash can for her Kleenex and witness the glare of irritation she offers in return. 

10:28 - Receive a text from Scott: "She is a real grouch. I don't feel sad for her at all." Laugh. Feel happy that I married him.

10:32 - Scott goes to the bathroom for the second time since we arrived. Fuss a little about him being ridiculous. I think he needs to see a urologist. 

10:40 - Have my vitals taken. Blood pressure is106/70. Not too bad for a nervous patient!

10:45 - Learn that the application of Lidocaine I did was insufficient. I just smeared it over the port like skin cream. I was supposed to put a big glob on and then cover it with a bandage to prevent it from wiping off onto my clothes. The nurse asks me if I want to try again and wait another 45 minutes. I do not. I tell her I'll be tough. 

10:50 - Injection. I was tough and it was fine. 

10:52 - Blood draw. We have to wait for the results before the actual chemo to make sure my white blood cells, platelets, and hemoglobin are at acceptable levels. I think I live here now. 

10:58 - Go over the anti-nausea plan. It includes three I.V. medications that I will get before the chemo and then two oral medications to take at home. 

11:17 - Go over the medication plan for possible headaches with an oncology nurse. Become anxious, again. 

11:32 - Learn about the steroid I'll be receiving today to help prevent hypersensitivity reaction to the chemo. My nurse tells me that medical professionals have a love/hate relationship with it, because it will help minimize the chance I develop severe itching or nausea, but it also can make it hard to sleep and make me irritable. 
"Well, I don't care about irritability. That's going to be his problem" I say gesturing to Scott. "But I do like to sleep."

11:41 - Talk to the nurse about the Doxorubicin. This red drug can make my tears, sweat, and urine red. I'm not to be concerned. It also can cause mouth sores and a decrease in ability to taste. So, it is advised that I suck on a popsicle during that part of the treatment to constrict the blood vessels in my mouth. FINE. If I have to have a popsicle, I GUESS, I will. 

11:46 - Have a conversation with Scott about how he secretly hopes I get red tears.
"Me too! I don't cry very easily anymore, though. Maybe we'll have to watch a sad movie?"
"I don't want to watch a sad movie."
"Well, how are we going to get me to cry, then?"
"I don't want you to cry."
"Are you paying attention?"
"Yes. You want to cry? Oh! The red tears! I'm with you now."
"You're not good at this."

11:54 - Pre-drugs. I launched a complaint with my nurse about one of the drugs looking like a giant syringe full of chicken fat. She promised that it wasn't and tried to convince me it looked more like a pina colada. I maintain my assessment.
The most notable reaction was a painful, prickly sensation from the steroid. It only lasted about 5 minutes, though. Luckily, the other two (including the chicken fat) were administered without issue.

12:08 - Take my I.V. pole to the bathroom with me. Notice that there is a little uncleanliness on the toilet seat. Wash it and then wash my hands before proceeding with my original purpose. Wonder how I went from cancer patient to scullery maid so quickly. 

12:35- Popsicles! 1st chemo drug as a push from two different syringes. 

12:58 - 2nd chemo drug as a slow drip.

1:22 - Take my I.V. pole to the bathroom again. Notice that I'm a bit tangled and make the misguided decision to walk a couple of circles around it to unwind the tubing. Get dizzy. Go to the bathroom. It's red already! Despite the forewarning, I was a little surprised. 

1:46 - Chemo is over.

1:57 - Neulasta Onpro is applied. It is an on-body injector, meaning it will deliver medication 27 hours after application. There was a small needle poke and then the needle goes back into the device and leaves behind a catheter. Tomorrow evening, the catheter will slowly administer the medication, which reduces the risk of infection and hospitalization. It's pretty cool. You can read about it here.

2:05 - We stop at Costco so Scott can get a bunch of Liquid I.V. for me. The nurse recommended it, because the chemo is good for killing cancer but really bad for me. I have to stay really hydrated to flush it out. 

2:50 - We arrive home to beautiful bouquets of flowers picked by Laila (who would like to go by the name Jesse, now). Peonies, Iris, Rhododendron, false indigo, phlox, salvia: they are all over the house and bring lots of joy to an otherwise mostly stupid day.  

2:53 - I blew my nose. It wasn't red. Disappointing. 

5:30ish - A little nauseous. Not terrible, but certainly noticeable. 

6:18 - I ate half of a banana. It tasted weird. 

6:44 - I'm bored of taking notes, so I'm stopping now. Plus demain ou peut-être samedi. (I just kind of felt like writing in French. It means "more tomorrow or maybe Saturday.")

PSA: It turns out that Blogger no longer supports email alerts. I have a genius tech friend looking for a solution, but in the meantime, please send an email to lhewitt27@gmail.com if you'd like me to add you to my update list.

Ready as We'll Ever Be

Well, doesn't the universe have a witty sense of humor? I just tried to publish my post about being ready for tomorrow and the blogosphere deleted it. So, it appears I'm not ready. I have to do it all over again. 

Cool.

Tomorrow is the first day of chemo and Scott and I ate a mediocre freezer pizza to commemorate the occasion. It isn't so much that we wanted pizza. It's more that we both used up all of our emotional and physical energy being productive and cheerful employees all day. Now we're drained. And we're scared. 

We have done everything that we've been told that we should do to prepare. 

The port placement surgery was on Monday.

This is what it looks like from the front. There are two incisions and a big lump.

This is what it looks like from the side. I turned my head so you can see the catheter snaking up into what I believe is my superior vena cava. This photo makes it look a little more exaggerated than it really is, but not by much. So far, we're not friends, my port and I. It's temporary name is Viper for being noodle-shaped and delivering poison.  

The "Survivorship Information Session" was yesterday. 

There was a lot to cover.

My echocardiogram was this morning. An EKG is not a painful procedure, but it did last almost an hour during which time the ultrasound wand felt like a bunch of slimy leeches slopping all over the left side of my chest. As an upside, though, I got to see all of the atria, ventricles, valves, etc. of my heart. My mitral valve (and probably yours too) looks like a little bird wing when opening and closing. I named it Cheepy, which is the name I give to most birds. There are a few exceptions. Robins are all called Robin Red Breast. Cardinals are called Cardi B. Owls are Hooty. Ducks are Puddleduck, Sasha, Ruben, or Quackeroo. All other birds are Cheepy. 

I did not share that information with the tech. 

I also did not tell her that squirrels are called Nutkin, chipmunks are called Chippy, and rabbits are all named Peter, Longears, Thumper, or Sir Bounce-a-Lot. I just didn't feel it was pertinent. 

I have purchased all the self-care items that my oncologist's office recommended. 

• Wigs and head coverings for hair loss
• Satin pillowcase and baby shampoo for sensitive scalp
• IBD brush-on glue for brittle nails
• Velcro seatbelt cushion to protect my port
• Senokot laxative for constipation
• Imodium for diarrhea
• Systane drops for dry eyes
• Fragrance-free lotion for dry, uncomfortable skin
• Baking soda for mouth sores
• Ice socks and gloves to prevent peripheral neuropathy 
• Saltines to keep by my bed for morning nausea
• Two prescription medications for nausea
• One prescription anesthetic lotion to put on my port before punctures

So, I guess we're ready, now. 

We're terrified, but the only way out is through. 

PSA: It turns out that Blogger no longer supports email alerts. This means that I am getting a lot of questions from well-meaning friends who didn't know that I already posted an update with all of their answers. I have a genius tech friend looking for a solution, but in the meantime, please send an email to lhewitt27@gmail.com if you'd like me to add you to my update list.

Be Careful What You Wish For

Well, clearly, I screwed up. And I don't just mean that I ended the title of this post with a preposition. I mean something with much greater consequences, like barfing and cardiac toxicity and additional surgeries and the possible cancelation of our summer trip to England kind of consequences. And that last one really blows, because we have tickets to see Ed Sheeran at Wembley Stadium. 

In addition to Teddy and all of the regular tourist destinations, we're also going to see the ancestral home of Scott's family (the Berry Pomeroy Castle), the county in which my grandfather spent his youth (Surrey), Etihad Stadium (Manchester City's home pitch), The Prince's Head Pub (a.k.a. The Crown & Anchor Pub from Ted Lasso), the town of Oxford, the Jurassic Coast, and the Warner Bros. Studio where much of Harry Potter was filmed. In fact, I just received an email today from the Warner Bros. (the studio, not the siblings) letting me know that two new sections have just opened: The Burrow and Professor Sprout's Greenhouse. 

But enough of the good news. This is a blog about shitty news. I just swore. My apologies to any nuns, grandparents, or toddlers who are reading this. 

So, back to radiation and chemo. Oh, did you not know that's what we were discussing? It is. 

The last time I posted I was complaining about not knowing if I'm going to have radiation or chemo or nothing. I know the answer now and it is none of those options. The answer is BOTH. First chemotherapy and then radiation. 

How did this happen? It's easy. Everything that has a such a small chance of occurrence that the doctors just tell me about its possibility as an afterthought actually happens to me. Well, not everything. I mean today we heard that there is a 1% chance I could develop heart failure and/or Leukemia. I draw the line there. Blood transfusion? Fine. Scalpel slipping through my skin from the inside? That sounds reasonable. Nipples falling right off? Okay. But heart failure? No thanks. I'll not have that, if you please. 

In short, the OncotypeDX study of my cancer cells came back recommending chemo. The second opinion from The Mayo Clinic came back recommending radiation. So, damn. 

I just swore again. 

If you want to know all the details, they are these: 

• It is unclear if this is a second primary cancer or a true recurrence. There is no way to tell at this point. Because of the proximity and similarity to the first cancer, we're calling it a recurrence. That said, it could be a recurrence of the Invasive Cancer or of the Ductal Carcinoma in Situ. I guess it doesn't really matter, though, does it?
• My Oncotype score is 26. For someone my age with a recurrence, the threshold for chemo consideration is anything above 20 and the threshold for strong recommendation is 25. 
• My score for distant recurrence within 9 years (meaning metastatic disease in liver, bone, brain, etc.) is 16%. 
• My score for relative risk reduction by adding chemotherapy is >15%, meaning that my recurrence score drops to <1%. That's what doctors call a very substantial benefit.
• We were given two options for chemotherapy treatment plans. One is called TC. It is 4 infusions two weeks apart. The other is ACT for Adriamycin, Cyclophosphamide, Taxol. This is a teaching blog. Soak it in. 
• The ACT is more aggressive and more effective. It is 8 infusions, two weeks apart and is the one my doctor recommended for me based on the fact that Scott wants me to be around for several more decades of being the most entertaining part of his life. (He didn't say that, but I'm certain he would. I'm lots of fun.)
• The chemo will start next week and my hair will fall out sometime in the next three weeks.
• Each infusion lasts 3-4 hours.
• The worst days will be days 3-7 after each treatment. 
• I will be given strong anti-nausea medications at the clinic and to take at home. 
• It's very likely that some foods will not taste the way I expect them to taste. I'm hoping that happens for zucchini. I don't like zucchini, so maybe it will taste like my mom's smoked turkey sandwiches or my dad's chocolate cake? Let's hope. 
• I will be immunocompromised. Stay back all of you sickies!
• I will probably develop neuropathy in my hands during the Taxol portion (also known as Paclitaxel, but still called T chemo). Iced gloves will be provided for my discomfort in an effort to prevent it.
• Before I can start the treatment, I will have an echocardiogram (or an ultrasound of my heart), a chemo information session (also unpleasantly named Initial Survivorship Appointment), and surgery to place the port. 
• The port is a small disk that will be in for the duration of the four months. It will be under the skin right beneath my collar bone with a catheter that feeds straight to my heart. The purpose of this to get the drugs into my bloodstream as quickly as possible so they don't have the chance to cause chemical burns or skin rashes from the inside out. Neat. 
  
• I won't know much about radiation until Friday. So, stay tuned for that exciting announcement.

In closing, here are some photos for your additional edification. 

This is a port.
Isn't it tiny and cute? 

This is zucchini.
It is yucky.

This is Professor Sprout with a Mandrake.
Mandrakes are tiny, but decidedly not cute. 

This is the Jurassic Coast.
I think it's more magnificent than cute, but you may draw your own conclusions. 

These are metastatic cancer cells. 

They are beautiful, but I still don't like them.

No News is the Worst News

I keep waiting to post an update until I have something to share, but it appears that may never happen. I guess I better just go with what I know ... which is frustratingly little. I'll put the inadequacies of my cancer knowledge acquisition into categories for your convenience.

Medication:
I've been taking Arimidex for two and a half weeks now, so only 4 years and 50 weeks to go! (Although, they have warned me that by the time we get to the five-year mark, it's probable that the recommendation will be a course of 10 years instead of a mere 5.) Apparently early results of several studies show that an additional 260 weeks may be beneficial. We shall see. 

I'm managing it fairly well at the moment. The first week was tough. I was so weak and tired that I had a hard time walking down the hall to the copy machine. During a team meeting one day I started upright but became progressively slumpier (it's a word. I just coined it.) as the discussion progressed. By the 40-minute mark, I had morphed into a sea cucumber sporting business casual and testing the limits of my ergonomic chair. They sent me home. It was probably a good choice. 

DEXA Scan:
Monday, I had a dual energy X-ray absorptiometry test to get a base line for my bone density. It was no big deal, unlike some of the other scans I have had involving contrast dye or I.V. radioisotopes. I was not told that I could not fly after my DEXA scan for fear of setting off metal detectors with my very self. So, that's good, I guess. 

What wasn't good was that the technician seemed to be a non-sensical mixture of an adult and a hyperactive toddler. She threw her arms up to accentuate a loud "YAY" upon learning that I had not accidentally swallowed any calcium or antacids in the last few hours. I was startled. 

Then, after I was changed and ready to go, she inquired with entirely too much excitement for the occasion: "Are you ready to play?" 

I wasn't, but it seemed rude and possibly ill-advised to say so. 

The test was fine, but I didn't really have fun, which is the point of play as far as I understand it. So, I guess she isn't really that good at her job.

Radiation:
To radiate or not to radiate, that is the question. The answer remains elusive. We haven't heard back from radiation since my last post. As a review, it's up in the air, based on several things but mostly a second opinion from the Mayo Clinic. Hopefully that feedback will come soon. 

Genetics:
We met with a genetic counselor on the 12th. She was very nice and spent a long time explaining genetic code, mutations, variants, sequencing, chromosomes, and all other things I have forgotten since high school. Genetic testing on cancer cells can help determine why cancer occurs and if it poses a risk to others in the family. There is a high chance that we will learn something really helpful, like I was born with a predisposition for cancer or I have an acquired gene mutation that caused my cancer and may continue to encourage abnormal cell growth. I'm pretty curious to see a report card on my cells' delinquencies. 

Unfortunately, there is a lot of paperwork and arranging before the test can take place. So, although we spoke to her two weeks ago, I don't go in until this Friday to have the blood drawn for the testing. Once that is done, the sample will be sent to Utah visit a lab and possibly go on a hike in Zion National Park. We won't hear anything back for about a month ... presumably because climbing to the top of Angels Landing is terrifying and my blood might need a couple of tries to work up the courage.

Chemo:
I hate this part of the story. I still don't know if I'm having chemo. We're waiting on the results of a test called Oncotype DX. This report will tell us both the likelihood of recurrence of my specific cancer as well as the extent to which that recurrence percentage would be affected by chemotherapy. I was supposed to get this information last week. Then I was supposed to hear yesterday. Spoiler alert: I do not have the oncotype results. 

To be fair, I did talk to the oncology office yesterday. Unfortunately, what they told me was not the results of the test. Instead, they shared that there had been a snag between the lab and the insurance company. This resulted in a three-week lag during which time nothing had been accomplished at all. Naturally, I was delighted. 

I have been assured (and I obviously trust every medical detail that I'm told) that it shouldn't be another three week wait and that answers are imminent. I remain unconvinced. 

A Quick Radiation Update

Scott and I met with the radiation oncologist today. He was awesome. 

We conversed. We laughed. I cried ... twice.

Once again, there is a lot to report, but the short version is this:

• Radiation is the standard treatment for a recurrence of breast cancer. 
• If we do radiation, he recommends 25 sessions, plus a 5 session boost at the end. 
• If we do radiation, the sessions would be 5 days a week for 6 weeks.
• If we do radiation, we would start this summer, because of timing. It takes 1-2 weeks for the mapping/planning phase and you can't have any breaks in treatment. We have a vacation planned for June, so the planning would happen before the trip and the treatments would start as soon as we get back. 
• If we do radiation, I can expect to be tired, sore, maybe swollen, feel sunburned, maybe blister, probably have skin discoloration across my chest, into my armpit, and up on my neck. Also, about 30% of the patients have constricting around the implant that would require surgery.
• Because of the lupus, all of these side effects, particularly the blistering and the likelihood of surgery, are increased.
• Because my cancer in 2010 was a stage 1 and the cancer this time is a stage 1, the need for radiation isn't so clear. Both times it was a small, slow-growing, early discovered tumor. 
• Because I was so young with my first cancer, this indicates that radiation could be important.
• Because I'm still young now, this indicates that radiation could have late-developing side effects many years down the road and should be avoided. 

So, it's all debatable. It's ultimately up to me, but the doctor said there is both a good reason to do radiation and good rationale for skipping it. 

I'm VERY uncomfortable with doing nothing. As much as I'm unhappy about the potential side-effects of both radiation and chemotherapy, I feel like doing neither will leave me incessantly anxious, waiting for the cancer to return. 

As a result, today's doctor put in a request for the Mayo Clinic to review my case. They will look at both the pathology from 2010 as well as that from 2022. They will look at the oncotyping of both tumors. And, since it was at the Mayo Clinic that the initial lupus diagnosis was made, they will be able to review all of that lab work, as well. Within the next few weeks, we should hear back from them.

In the mean time, he also got me in to see a different medical oncologist. I explained my displeasure about Wednesday's visit and he just took care of it. So, that gives me relief. 

I wish that I knew what lies ahead, but at least now we have a partial plan for a DEXA scan, genetic counseling, another medical oncologist, and oncotype dx testing. Oh, and we picked up my prescription for the oral chemotherapy drug, too. 

So, that's my Friday.