Month: November 2016

The Chemo Diary – Third of four sessions – The best is yet to come?

October 21, 2016 marks my third chemo treatment out of four planned.

Now I might be in trouble if my surgeon demands more treatments, but my oncologist, who has been keeping my treatment plan to the minimum, believes that four will be enough.

I meet with the surgeon from Memorial Sloan Kettering next month in earnest under the guidance of my oncologist from Holy Name, and my Internest who keeps tabs on things.

As you can see, chemo has taken a tole on my 72+ year old face. Without hair, the wrinkles look like those seen on a 90+ year old woman. Fortunately, with a wig, those wrinkles appear minimized. On the bright side, curly fuzzies are growing in.

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Day 1 through 3 (11/21 – 23) – Monday through Wednesday

A nutritionist met me during my infusion period on Monday and suggested I get more vitamin D and protein. Keep in mind that I’ve just returned from 5 days in the hospital recovering from salmonella poisoning, where I spent most of my time on the toilet getting rid of everything that my stomach could hold. I am not surprised that I am short of nutrients.

My oncologist reported that my urine test 3 weeks ago did show that I had a low bacterial infection, a condition which I believe was responsible for all the crotch burning I felt. I have now taken matters into my own hands and began daily supplementing on D-Mannose. So far, no burning!

I strongly recommend female chemo patients consider taking this supplement. Check with your oncologist, of course, but keep in mind that he or she might not know about how urinary bacterial infections affect women, or volunteer a discussion about the possibility of getting one. Given fears about chemo side effects, you might think that crotch pain was something you have to endure.

Thankfully, I’ve entered this third therapy period fully dosed on D-Mannose. We’ll see how that works out.

Presently, I am still riding the effects of steroids. I receive steroids to reduce potential negative effects of chemo. Well! These steroids are great! I understand why people get addicted to them because they fill me with energy.  I suspect my elation will be over on day 3 (tomorrow) when, according to my diary notes, I’ll enter a deep sleep. We’ll soon see.

 Day 4 (11/24) – Thanksgiving!

Luckily, the steroids were still kicking in until around 4PM, so I had a happy, active time with my family. Around 4PM, however, I did start to get tired, and by early evening, was sacked out in my daughter’s bed. We got home around 9PM, where the chemo reaction reared up. Between being tired, having muscle twitches, and going to the bathroom with loose stools every hour or so, I did not get much sleep.

On the plus side, I relieved the twitching by a 5 minute “ride” on my glider. As for getting up all the time, I had no choice and just got used to it.

Day 5 (11/25) – Friday

After returning home on Thanksgiving, I immediately fell asleep, but woke up about every hour and a half, forced to get up by a loose stool. Fortunately, the my bathroom is very near my bedroom door! I also had some muscle twitches, which I put to rest on my glider, but essentially, I had to go to the bathroom so often, I failed to notice anything else for long. The moment I hit my bed, I fell asleep, only to wake up and go again. This continued until around 8AM.

I was tired throughout the day, with some coughing spells and runny nose. Fortunately, I do not have a fever (I check a few times a day), nor burning crotch, which makes the situation more pleasant than during the last two chemo treatment periods. The runny nose is weird because it is unlike having a cold – periodically, my nose just starts running and I better have tissue nearby to stop it.

I have absolutely no “taste,” or I should say that what I do taste is awful. OK, not poison, but not palatable.  Water tastes awful, so I avoid it, even though I know I should drink quite a bit. I understand why some people on chemo starve. I avoided food until going out to Uno’s of Chicago Grill, which serves some of my favorite dishes (it is a pizzeria that has some vegan and vegetarian food). Unfortunately, my weirdly responding taste buds made sharing a beer with Phil unpalatable. The best food was steamed broccoli, which is easily digested and one of my favorite veggie dishes.

We stopped at Sam’s Club on the way home to pick up a big fruit platter which I’ll be dining on for the next few days and I sank into bed immediately upon returning home. Again, this “sinking” equates to immediate deep sleep. After hitting the sheets, I stay in position. I have no urge to get more comfortable as I am too tired to move.

On a positive note, I did not have to get up every 1.5 hours for the rest of the night, starting around 8PM and getting up at 8AM the next day.

Day 6 (11/26) – Saturday

The morning greeted me by pushing a desire to return to the bathroom several more times within a 5 minute period. I have no idea where this stuff I’m flushing out comes from. I can produce crap like a major manufacturing hub!

The top of my tongue burns, but generally my taste is not as awful as it was yesterday. The most soothing drink I have had is coffee.

I’ve noticed the tips of my thumbs hurt for some reason and small, red splotches are marching up the front of my thumbs and the pads of my thumbs are dark red. My back itches like crazy!

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As of now, I do have male-pattern baldness. My hairline above my forehead is pretty much nude except for patches of curly fuzz. Hair still falls off, but not like it has been over the weeks. I noticed short hairs adhered to the shower curtain; my lost hair behaves like that what’s lost on a shedding, short-haired pet.

Hopefully, I’ll start exercising again this afternoon. Currently (around 10AM), when confronted with a choice – sleep or glide – I choose sleep.

The good news is that I went out with my family for dinner – had fun with our grandkids and didn’t fall asleep once. I actually feel very energized around 6:30PM this evening. Possibly a loving family is a better pick-me-up than steroids!

Day 7 (11/27) – Sunday

I did a bit of googling on chemo and loose stools and found out if you have, like, 6 to 8 episodes within a short period to call your doctor. Hummm. I’ll discuss it with his nurse tomorrow.

Every “port” I have on my body that is designed to keep fluid inside my body seems to be leaking. A particularly irritating side affect is drooling when sleeping. Apparently my lips no longer seal properly, so in order to keep my pillow sanitary, I need to sleep with my face facing upwards.

Also, I’d love to drink a fresh glass of water or other drink, but my taste is just off. Frankly, I can’t really detect salt in food! Luckily, it is not so off that it makes me nauseous.

Having my family (and kids) around on Thanksgiving and this past Saturday has kept me from periods of deep sleep. Today, I nodded off frequently, but not as heavily as I did during my first two chemo sessions. I think that having a low level bladder infection at that time really knocked me out.

Dinner today consisted of brown rice with quinoa and pepper, black beans, and a hefty serving of mushrooms, all super easy to digest, plus sauce on the side and balsamic vinegar. Our desert was made up of two Whole Foods cookies. I’ve backed off devouring a lot of hummus and whole wheat bread as I’ve started to gain weight. Bread of any type is absolutely addicting.

The roseola is still on my thumbs and Google says it represents a viral infection. Ick! Something else to ask my doctor on Monday.

The good news is that I am not running to the toilet as much I did on Friday. Still, if I have to go, one better be nearby.

Day 8 (11/28) – Monday

After rereading my chemo diaries to date, and having experienced a surprise, 5-day visit to the hospital for salmonella, I came to the conclusion that I cannot tell what my state of being is because nothing on chemo makes sense. Throughout my life, I’ve managed my health. When I felt bad, I slowed down. Very rarely, I visited my doctor. With the exception of broken bones (which I largely managed myself) and two knee injuries, I took care of myself.

But with chemo, the idea is that you ingest a shit-load of poison and that does its work in ways that poison normally works, but the converse result is assumed good health. At the moment, my nose is running like a faucet, but not a normal cold. I have stuff growing up my hands. Fortunately, after some hi-quality candy and a few cookies, my taste is coming back and I can drink water. I have become a poop manufacturing machine. And a good night’s sleep is at least 3 straight hours without having to go to the bathroom.

Given my now highly recognizable since of ignorance about my physical health, I called my chemo doctor’s office today, and ran down my litany of symptoms to find out whether I should be worried or complacent. The good news is that I did not have a fever, nor do I have even a touch of UTI:

  • The red dots (acne?) growing up my thumbs and first fingers need to be treated with Epsom salt soaks. If the dots become infected (again, acne), I need to call my doctor immediately.
  • The loose stools can be treated with an over-the-counter diarrhea medication, but if the condition does not return to normal, call my doctor immediately.

While I’m on the super-healthy whole-food, plant-based diet, today I found the most curative food to eat has been some Whole Foods cookies and fresh, home-made New Jersey chocolates.

Awakefullness: While I am still sleepy, I am not sleepy in the way I was during the first two treatments, although during that time I was running a UTI infection, then ultimately, a salmonella infection. I can manage thinking much better this time around and have actually read numerous pages at a time from “The Girl with the Lower Back Tattoo” by Amy Schumer (oy oy oy!), completed a craft project, and enjoyed a family-filled holiday. I hope I make progress on this front even knowing that I have 13 more days to go in this period. (Note that I had to calculate 21 days minus 8 in Excel to find the answer, after failing to count the days on my fingers.)

Day 10 (11/30) – Wednesday

Hummmm. I must not have saved yesterday’s post. Darn!

Well, yesterday I started loosing my thumb prints.   It got so bad that I could not use my right thumb print to open my iPad or iPhone, both of which I can unlock with a print and I had re-create that security feature. Phil had a physical today, so I had an opportunity to speak to our Internist, who could plainly see the deteriorating prints. Here’s an article on the subject:

Why Some Cancer Patients Are Losing Their Fingerprints

 I have no official idea about what to do. My guess is to massage my hands more with hand lotion. I have a little more life in my thumbs now, but the palm of my left hand is pealing like it had a sunburn.

Until last night, I hated the taste of water or any beverage, but that changed with dinner out at Uno’s, thank goodness. When I got home, I began and continued to drink orange juice as though it was the only liquid on earth.

Day 11 (12/1) – Thursday

The big sleep descended over me and I stayed in bed for long stretches. I am not as knocked-out sleepy as I was during the first treatment period, but I’m plenty tired. I hold my head in my hands while eating, for example, because I feel like I’m taking extremely brief naps while I chew or talk.

The good news is that I’m drinking more, I am going to the toilet far less, I don’t wake up to go to the toilet, and I have not had any fevers. I am slamming orange juice, however.

Day 13 (12/3) – Saturday

As I discovered on Wednesday, I was losing my thumb prints and my coughing increased. My nose is running like I have a cold. Coughing comes in spells and my breathing can become labored when I walk in a store, like Sam’s Club. As I do not have a fever and my Internist didn’t hear anything in my lungs, I don’t really know what is wrong. Given how the chemo damages tissue, I fear that I have no lung damage, or if I do, that it heals itself as the chemo wears off.

The good news is that I ordered an air cleaner on Wednesday, which will be here on Monday. My lungs will be so happy. the type of dust in our house can only be withstood by people with healthy lungs.

OK, now for the fingers. I noticed that my fingernail appearances were changing with a white strip across the bottom third of most of them.

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I learned that this mark indicates root damage and begins to form when chemo starts. This article, Chemotherapy and Your Nails, provides information I didn’t know before. Poor nail care can lead to lymphedema (oh my gawd oh my gawd) which you can read about in this article, Lymphedema.

The picture above actually shows my nails looking much better than when I first noticed the issue as I “scrubbed” them with Johnson’s Baby Gel and pampered them so that the nails and surrounding skin didn’t crack, which would let in bacteria, which, of course, can be deadly. (Google the subject and look at pictures of this condition. Yiipes!)

The skin in the area of the “red dots” I discussed a few days ago is either cracked or pealing. Again, better in the picture below because of the application of gel. I wouldn’t have really noticed it as being anything to alarm me until I read the linked and related articles. Basically, if you are on chemo, do not let your skin crack and with that in mind, I also noticed the skin around my outer palm peeling as though it was the aftermath of a sunburn.

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Now back to my thumbs. The photo to the left shows how smooth my right one is (the left one is similar) and dry, lined areas. The skin feels like a paper bag encasing my thumb tips. Again, since noticing this, I’ve massaged my thumb tips a lot in hopes that I can revive the tissue so that when the chemo wears off, it will regenerate.

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Obviously, I do not want to lose any part of my body to chemo, so I am very concerned, especially seeing that I can open my iPhone 7+ and iPad Air 2 with a thumbprint. I’ve had to reload my thumbprint twice. If it gets to the point where my devices don’t see it (oh, please, no!), I will use a different finger. The good news is that none of my fingers are numb, so I can sew, draw, and do other things without a problem.

Day 18 (12-8) – Friday

My fingernails now have two distinct white stripes, one for each chemo treatment that shows with nail growth since that time. I suppose I’ll end up with four of these.

As of today, I first got my taste back. Water tastes great, as a matter of fact. I still have a weird taste in my mouth, but it is not so bad that I don’t feel like eating. For the past few days, nothing really tasted good, but hunger overcame my desire to go hungry. The sweet taste in things seemed to be blocked, so eating something like an apple, banana or even a cookie was not all that pleasurable.

I have far more feeling on the tips of my fingers than when I first discussed the issue of my thumbs and first fingers going numb. Unfortunately, my iPhone and iPad’s fingerprint security logon system does not work well, even though I scanned in fresh prints. I’ve even added my first finger to the list of scans, and that does not take. The tips of my thumbs now feature light cracks, but my first finger tips seem normal. Possibly the skin has changed in some way that doesn’t connect well to my iDevices.

My next chemo session will be Tuesday, December 13, so at this time, my body should be transitioning back to normal. Unfortunately, I still have bouts of sleepiness (although more like once or twice a day, rather than numerous during the day) and I have something that is either a cold, or chemo related; no fever, but a runny nose and periods of coughing.

Mentally, I’m alert and I’ve created a few scarves, improving each time I make one. So far, I have not experienced chemo fog.

Day 19 (12/10) – Saturday

I keep re-scanning my right-hand thumb and first finger into my iPad Air’s and iPhone 7+’s security feature and these scans work one or two times, then after that, they fail. My fingertips appear to be changing somewhat rapidly. Luckily, I have feeling on my fingertips and no pain, although the their skin feels like a brown paper bag, especially on my thumbs.

Here is what my right-hand fingertips look like today:

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Hopefully you can see where my prints are disappearing. I keep my hands lubercated, but you can also see where peeling occurs.

Author

This diary is written by Karen Little on a day-to-day basis as she experiences her first chemo treatment for breast cancer. Photography by Karen and Philip Little. Published as a series starting in October 2016. All rights reserved by Karen Little and Littleviews. Questions? Please contact Karen at Karen@Littleviews.com.

The Chemo Diary – Second of four sessions – How things change

I started this second Chemo Diary on day 4 after receiving an infusion. Like during the first infusion period, I felt an exceptional surge of energy on day’s 1, 2 and part of 3. I discovered this was a result of the steroids I received as part of the treatment. I now understand why someone could become addicted to them. They make you feel “perfect.”

During my period of high energy, I had a second opinion related to upcoming surgery options from New York City’s Memorial Sloan-Kettering (MSK), the number 2 cancer center in the USA. My decision is to continue oncology treatments at Holy Name Regional Cancer Center in Teanack, NJ, under the direction of my current oncologist, and surgery at MSK under a specialist in lymph node removal and treatment. I will participate under her ongoing study in 2017.

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Money: Right now, my human body is worth more in medical charges than an average home is in Wisconsin. Luckily, I have Medicare and Medigap insurance plans, so my family won’t go broke.

With Medicare alone, I stood to pay thousands of dollars *per month* out-of-pocket for treatment. Want to know why medical costs are raising? Check out cancer treatment. In the future, I’ll start posting bill summaries from my Medicare account. Even if you are perfectly healthy right this second, after seeing these charges, you’ll feel sick!

Day 4 (11/3/16) – Thursday

As I left The Chemo Diary – First of four sessions – what happens when!, I discussed my biggest problem with treatment, which has been burning crotch.

I’ve since learned that tender crotch tissues are similar in composition to mouth and tongue tissue and if your tongue burns, it is likely that the crotch will, too. In addition, some aspects of the burning are similar to experiencing a bladder infection, something I do not want to deal with during chemo treatments.

How serious is this? There is a lot of soft tissue is exposed between a woman’s butt to her vagina. Ouch! Men, however, can have a similar problem at the tip of their penis. If you are (or care for) a chemo patient, pay attention to complaints and needs in this regard because the burning does effect one’s quality of life.

Recommendations to reduce or eliminate crotch pain:

Buy and use a bidet of some type. Only clean your private parts with water (even the water can burn). Do not rub or scrub. See my links for recommendations.

Slather yourself with Desitin Maximum Strength Zinc Oxide Diaper Rash Paste. Renew a few times a day. Be generous!

Wear soft, extra-long incontinence pads. I prefer Sam’s Club Member’s Mark Brand – extra-long.  Realize that a jolt of pain can bring on an unexpected incontinence event. Equally important is that the long, soft pad will keep the zinc oxide from getting all over your clothing.

Consider taking the supplement “D-Mannose – 500 mg,” which is a sugar found in cranberries that reduces bacteria in one’s bladder. My oncologist says that there is a medical formula available for this, however, I take an over-the-counter brand.  The dose is two to three capsules at a time, as needed. This works for me. Obviously, you should discuss the situation with your own oncologist to make sure that it doesn’t interfere with your treatment.

Buy and use “medical donut cushions.” Reduce pressure on your crotch as much as possible.

And yes, my tongue is irritated, which wasn’t the case early on in my first infusion treatment period. The irritation changes the way I taste things, making eating a bit of an adventure. Note that I like the taste spicy flavors, which actually helps the situation!

. . . and now for a nap. My napping schedule is one hour up, one asleep.

Day 4 & 5 (11/4 to 11/5) – Friday & Saturday

Between the Friday night and Saturday around noon, I visited the bathroom about once an hour. Unlike my first chemo session, I have fewer (almost “no”) issues with muscle cramping and I used my anti-crotch-burn solution to get through the evening. That said, I was up about once an hour. I felt like at least 50% of my body was flushed into the sewer.

For these two days, I’ve had a low fever to about 100.5. It’s around 7:15 PM on Saturday right now, and if I continue this, I’ll give the hospital a call.

Basically I am tired and slept most of the time. Today, I eat Campbell’s navy bean soup for lunch and had a baked sweet potato for dinner, plus a cup of tomato juice. A bit later, I plan on a slight cup of orange juice.

I exercised a bit on my glider and am wondering if I should push myself. I’m worried about this low fever, however, and have erred on the side of relaxation.

Around 6PM this evening, crotch burn returned after being completely absent for 24 hours. Ratz.

I feel like I am mentally active (no “chemo brain”) but only that I can think clearly when I drift in and out of sleep. Checking my last diary, my fever was a degree higher. I should have checked in with the hospital.

Day 6 (11/6/16) – Sunday

I’m writing this in two sections, the first, thankfully brief, is what I experienced overnight, and the second, how I responded to the experiences.

Overnight Experiences: Muscle/bone twitching, a crotch attack, and fever.

Responses:

Muscle/bone twitching: Luckily, in my Chemo Diary I, I researched how to deal with twitching where I found out that leg lifts, plus moving each leg in circles really helps post-surgical patients. That simple exercise absolutely helped me again! Plus, after exercising, I put a pillow between my legs and drifted off like a baby.

Crotch burn: After almost 24 hours without one (and not needing to go to the bathroom every 45 minutes) it came back with a vengeance. When this happens, it becomes almost impossible to sit up in a chair, think, or try to sleep. After several minutes of hoping it would go away, I took two D-Mannose capsules, hosed down with water from my bidet, and re-frosted myself with a massive amount of Desitin Maximum Strength Zinc Oxide.

Unfortunately, the burning did not subside immediately, so I used “self-hypnotism” to redirect my thoughts. Self-hypnotism can also be called meditation or mind control. I use it to relax and focus on a goal, which in this case was to “return to normal feelings.” I am not sure how long I had to focus (it seemed like three hours, but I think that was my imagination), but I did return to normal and slept soundly until 8AM the next day, not needing to go to the bathroom once.

If you or a loved one is on chemo and suffers from this, I strongly recommend you figure out every way possible to get it under control because the opposite of it drives a person crazy.

My understand that some people get constipated. That must be awful! I recommend Ground Flax Seeds, one table spoon up to three times a day. I do eat Flax Seeds because of the positive effect they are supposed to have on overall health and fighting cancer. That said, if eating them never occurred to you and you get constipated while on chemo, consider adding them to your diet.

Flax seeds resemble wee wood shavings. Like nuts, they do not melt in a liquid and they retain their wood shaving constitution. I mix mine with 2/3rds of a glass of orange juice and keep them in suspension while I drink it. When done, you might have to chew a few remaining seeds in your mouth. The taste is OK, no matter how you drink them. Orange juice is not required. Water. Tea. Coffee. Or any beverage is OK for use as a mix. You can even sprinkle Flax Seeds on your food. I, however, find them dry and uninteresting and prefer to gulp them down to do the deed quickly.

Other Events: I woke up without a fever this morning. Since Chemo I, I’ve discovered that I need to frequently take my temperature as it can sneak up to the 100.5 degree line quickly. It seems as though when I am active in any way, I can get a fever, so during this round, I am not leaving the house and I am also giving in to sinking in bed in a moment’s notice. I also started keeping my bedroom quite cool and I have a fan going non-stop to circulate air. I have actually kept a fan going in my bedroom for years as its breeze resolved a forever-cough I had when working in offices. Now, it appears to be even more important, especially in keeping the air temperature low.

If you live in an apartment where you cannot control the heat, open a window and use the fan for cool air intake. IMHO, an overly hot room could put you in a threatening position. If you could turn off the radiator in your sleeping area, do so, then rely on an electric heater which you could control to warm the room when the outside temperature drops.

Mental Stimulation: Today I start challenging myself to periods of drawing, singing, and playing cards. Prior to Chemo II, I had been sewing, but I’m going to wait to get back to it when I have more energy. The singing is something I’ve created which is based on a list of top singers (mostly female), their top songs, the lyrics of those top songs, and their singing either on my music program (Amazon) or on YouTube.

I do love playing cards with people, however, with no people around outside of my husband (he is not enthusiastic) I plan on finding online games for hearts and rummy. The idea here is to actually play with serious challengers rather than play-against-the-machine.

By tomorrow, I hope to find some good links that teach auto-suggestion / self-hypnosis techniques which I will post here. I am also thinking of making a book proposal called “death . . . thank god.” This would be an up-beat book about facing one’s end of life and would include what to do when still living as well as making decisions as to when to pack it all in. The subject appears to be taboo. I hope to change that.

Day 7 (11/7) – Monday

I started having a loose stool late last night and it continued today in a controllable way.

I have had periodic bouts of high energy, followed by hours of sleep. I had hoped I would have felt more peppy today so I could start projects, but that did not happen.

Exercise is very gentle and consists of walking back and forth around a room for six minutes at a time. We eat out tonight at Olive Garden, but I only consumed tiny portions. When I returned home, I dropped in bed.

Day 8 (11/8) – Tuesday

I continued having a loose stool throughout the previous evening and current day. My temperature was always around 100.5.

The advice I received on the Internet about chemo and diarrhea has been to drink and eat small quantities of bland food. In addition to chemo killing off fast growing cancer cells, it also kills off the cells in my intestines.

I’m going into the hospital to be checked out as I don’t know what behavior on my part should be.

. . . Salmonella!

Day xx (11/10) – Sunday

OMG! I was admitted to the hospital on Tuesday. An MRI showed I had an inflamed colon. Late the next day, the report came back that I had salmonella poisoning!

When I was admitted, my white cell count was around zero and my doctors said when a white cell count is so low, I could have picked up bacteria that would not have phased “normal people.” Possibly, I caught it from myself given that I have frequent loose stools throughout my days.

The first few days I was in quarantine. Not only was my room blocked from the general public, I was not allowed visitors or even flowers from friends. Until near the end of my stay, I felt mentally alert, but very sleepy. I also frequently went to the toilet and every night, I sweat so much that I had to have my nightgown and bedding changed.

I am better today and will be released when I go 24 hours if I remain without a fever. As of now, when in public, quite possibly, I will wear a mask!

November 18, Friday – at home

We’ve since purchased a better thermometer that takes a reading in 2 seconds and I now use it daily, when I get up and go to bed. I’ve learned my lesson! If I have any deviation into the 100’s, I will call my doctor.

I continue to find the D-Mannose a very important addition in my diet and recommend it to everyone who undergoes chemo for any reason. Now this is just my humble opinion, but it seems to me that if the urinary track can harbor bacteria and chemo destroy’s one’s immune system, it would be a good idea to get rid of that bacteria in any means possible before having to get into rounds of antibiotics and potentially, the hospital.

After returning home, I felt 100% normal. No bouts of sleep. My taste almost returned to normal. My bowels were still loose, but by the end of this chemo period, they were returning to normal (bless my home bidet). No masks were necessary.

I’ll start the Chemo III diary next week.

Links

Author

This diary is written by Karen Little on a day-to-day basis as she experiences her second chemo treatment for breast cancer. Photography by Karen and Philip Little. Published in October 2016. All rights reserved by Karen Little and Littleviews. Questions? Please contact Karen at Karen@Littleviews.com.