Year: 2016

The Chemo Diary – Fourth and Last Dose

I received my forth and last chemo dose on Tuesday, December 13. Like other doses that included steroids, I felt fantastic until around 8PM the following evening when, in the middle of dinner, my ability to taste anything vanished.

It is now Sunday evening, December 18th (my 51st wedding anniversary). I had hoped that by now I’d be an expert in what to expect and, because my dose was lowered by 20%, getting through this last round would be a breeze. The cruel fact is that even though this was my last dose, the aftereffects still exist; no avoiding them.

My plan for this last Chemo diary is to collect my thoughts and provide tips for other people going through something similar. In the meantime, I’ll still report my day-to-day experiences.

Day 1 through 2 (12/13 and 14) – Tuesday through Wednesday evening

I planned meeting with my surgeon at Memorial Sloan Kettering in NYC for Wednesday because I knew I’d have enough energy to trek through New York City and see some of the holiday decorations. After scheduling the mammogram for Friday, January 13, Phil and I briefly shopped at the fabulous Bryant Park Holiday Bazaar, then dined at Heartland Brewery. Unfortunately, in the middle of a delicious dinner, my ability to taste anything gave out just as I started to eat a salad with fiery, hot salsa dressing.

Day 2 through 5 (12/15 through 12/18) – Thursday through Sunday evening

My urge to sleep kicked in and I had more trouble with leg cramps this time around (somewhat resolved with periodic exercising as reported in my first Chemo diary). Luckily, burning crotch did not return. Being awake versus asleep cycled in intervals of about an hour to three hours. If I was awake, my brain was poised to go back to sleep again.

More alarming is that my oncologist said that Chemo was causing me to have  neuropathy, which is nerve damage in my fingers. Nerve damage can cause the loss of feeling, tingling, pain, changes in the way the skin feels and small motor muscle impairment. To me, it felt like I was growing wee paper bags on my fingertips.

During my last Chemo session, I first noticed that the tips of my thumbs hurt, then I noticed that skin irregularities appeared. Last I noticed that my fingertips were splitting and that I lost my actual fingerprints. I could no longer use my thumb or forefinger to open the security function on my iPhone and iPad.

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After searching the web for a potential cure, I discovered that there were none and I have to rely on my own invention to cure myself.

Since discovering the problem, I spent time brushing my fingertips with a fingernail brush soaked in Johnson’s Baby Gel. This time, I added scrubbing my fingertips with pumice, using the brush you see below.

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The pumice appears to be doing the trick. My fingertips now feel lively and I’ve managed to get rid of all the cracking skin, although my thumb tips are still sensitive. The red irritations growing up my right thumb and left forefinger are also greatly reduced.

I plan on pumicing my fingertips twice a day, plus slathering on hand lotion every chance I get. While I can see my fingerprints, the ridges still are not strong enough to satisfy my electronic equipment’s security features but thankfully, I can open everything with the security code.

At this writing, I am still tired. When I pick up mental steam, I’ll report on how important skin care is when you undergo Chemo. For now, however, I am going to bed.

Day 6 (12/19) – Monday

I went to bed with a cough and woke up with a nose that runs like a faucet. There is nothing about Chemo that produces physical responses like what you might already know. If you think you are familiar with colds, for example, what Chemo delivers is something else altogether, so there is no reason to match what you knew about taking care of yourself with what you have to do now when you are amidst Chemo’s aftereffects.

In my case, every valve in my body that are supposed to prevent leakage from various “ports” have ceased to work properly. To cope, it is best to have incontinence pads and the softest tissue available. Do you have to go to the toilet. Well, go! and go quickly. I wear cotton T-shirts almost exclusively and I like keeping them spotless. Unfortunately, my leaky nose drips at unpredictable times and even making a grab for a nearby tissue box isn’t fast enough to keep the drips from ruining my shirt.

Thanksgiving occurred during Chemo 3 and I found that being with family for several days really reduced my episodes of tiredness. My husband and I are fairly alone for this period, however, and my sleepiness has returned. I’m hoping I’ll be over all this upcoming holiday weekend, although that is the period when my white blood cell count will be at my lowest, so I might be more perky, but I’ll be subject to catching every germ and virus that surrounds me. Grrrrrr.

All that said, it feels like the tumor that will be removed next month has shrunk considerably.

I have stage 3 HER2 Positive Breast Cancer which, as I understand it, means that the tumor attached itself to some skin and because of that is more likely to affect the lympth system than HER2 Negative Breast Cancer. OK – maybe I am wrong here, but I think that is the bottom line. For more information read the article, “HER2-Positive Breast Cancer Survival Rates and Other Statistics.

My next decision after a mastectomy will be as to whether I submit to radiation treatment in the form of proton therapy. The information I’ve read is mixed, with some saying that this type of therapy is only useful for 10 to 20% of cases, but within those cases, having the treatment increases survival rates significantly. Well, if I get the therapy, I want my oncologist to clearly tell me that eligibility is statistically well-founded and not a best guess. If it is just a guess, or “well, we do this to everyone because it seems to be a best practice,” I will skip it.

At almost 73 years old, it seems to me that I better make better use of my time on this earth than chasing procedures that will give me more time on this earth, but time tied up in therapies. Consider that proton therapy takes place daily for at least 5 weeks! And then there are all the add-on treatments that will be spread out over the year or years . . .

I will be writing about how to make decisions about what I will be doing with my time on earth in the near future. In the meantime, I’ll be sticking around the house recovering from this last Chemo dose, doing frequent 5 minute aerobic exercises and massaging my fingers.

Day 8 (12/20) – Tuesday

Cough. Watery, runny nose. Diarrhea. The night before, my legs were consumed by muscle spasms so much so that mid-night, I got up and eat a banana to balance out my potassium intake. That worked, but note that I eat bananas daily so I have no idea why I developed problems on this particular evening.

There is, as I’ve found out, no predicting what my body will do, so am just taking it as it comes. The good news is that I have not had a fever.

Days 9 & 10 (12/21 and 12/22) – Thursday

Continued watery, runny nose. Tired! Ear ache last night, with continued runny nose this morning, with a short period of it being bloody. No fever, however. At around 4PM, I’ve had a surge in energy and am now focused on cleaning the house without feeling the need to periodically nap.

Day 11 (12/23) – Friday

Yeah! I have all the feeling in my fingers back. That said, I will continue brushing my hands, messaging my fingertips and applying hand lotion.

Days 12 through 14 (12/24 – 12/26) – Monday

We spend Christmas Eve in Brooklyn at the Marriott Brooklyn Bridge Hotel to be near family (and avoid long interstate commutes). Here our grandkids can swim during the day and in the evening we all head out to a restaurant.

I, of course, was tired, but being around lively people kept me awake. I did, however, attempt a one mile walk which was a bit of a stretch, During the last half-mile, I kept wanting to lay down on the sidewalk to sleep.

I have been beset by the night sweats which, along with a runny nose, is another side affect of chemo. By around 3AM, I need to change my clothing, as everything (especially the shirt portion of my PJs) is uniformly damp. Luckily, I have plenty of T-shirts, but this is annoying.

In terms of eating, I’ve been able to avoid any type of meat, but fats do creep into everything else, from eating out to family dinners. I’ve given in to small nibbles of cheese and am not worrying about oils or butter that goes into veggie dishes. My family has a pretty light hand when it comes to oils, so I figure I’m able to tolerate it (fingers crossed, of course).

My time will now be focused on getting down to 150 pounds before having the mastectomy in mid-January, plus I am doing a lot of thinking and online research related to the subject of radiation (Proton radiation). I do not want it. Radiation is given to people who have a 5cm size tumor and mine is 1.1cm. The Catch 22 is that my type of cancer (HER2 positive locally advanced) anchors itself on skin. Now then, I am just abut 73, so should I look at “fighting” the possibility of cancer returning in the next ten years over ten years, or should I assume that my lifestyle (whole-food, plant-based) can provide degrees of protection.

For a good description of the type of protection my diet can provide, check Food as Medicine on NutricianFacts.org. Whether you read or listen to this information, pay attention to how the diet affects diseases like arthritis. If you have forgotten, since starting this diet, I lost all body pain and fibromyalgia, I now have complete flexibility, and my two injured knees have healed.

January 2 (Monday)

My chemo sessions are officially over. I’ve had a cough off and on to the end and still have tired periods, however, my brain is fully engaged and I am picking up stamina.

Between tomorrow and January 14, I will continue going in for biological therapy infusion (Biological Therapies for Cancer), which I’ll be doing every three weeks for 14 (or so) sessions. On Wednesday, I visit Memorial Sloan Kettering for a pre-surgical check-up, plus arm measurements for my surgeon who is studying lymph node issues after a mastectomy. And on Friday the 13th, I’ll have a mastectomy of my left breast. Those adventures, the end results of which last to the end of this month, will be the subject of my next diary.

My big decision is whether to get radiation. I am being pushed to get it, but I am not on-board. We’ll see what information will be provided to me to help me make the decision.

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 – 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.

 chemo3_12

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.

The Chemo Diary – First of four sessions – what happens when!

One of the biggest fears about being treated for cancer, breast cancer in my case, is not knowing what affect the chemo treatment will have on you. In this diary, I share what is happening to me during my first ten days of experience. If you don’t have cancer or have never taken chemo, you might find it interesting. If you are just starting your own treatment, hopefully, you will find it helpful!

For those you who know little about chemo treatments, side affects can include the following: loss of muscular and motor skills, mouth sores, nausea and vomiting, loss of appetite, loss of hair, chemo brain, skin and nail irritation, bone weakening, swollen extremities, and depression. For more specific information, see www.Healthline.com.

When you begin chemo, you don’t know if any of these things will happen. This means that the prospect of these side effects occurring can weigh on your mind like a nuclear  weapon that might explode. (The picture below is with wig on the left, and my natural hair on the right.)

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Preparation for Chemo

I was lucky in that obtaining a second opinion about my condition stretched the time between learning I had breast cancer and the actual administration of chemo to almost five months. During that time, “trained” to become the healthiest person possible, despite my affliction. Training included:

  • Switching my eating habits to a plant-based diet recommended in the book “How Not to Die” by Dr. Michael Greger.
  • Easily losing over 30 pounds having stopped eating wheat-based products as well as potato chips and fast food.
  • Working out frequently on my mini-glider throughout the day in 5 to 15 minute increments.
  • Shaving my head and buying a wig on the onset of treatment so it wouldn’t concern me later.

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The “glider” is a Gazelle. I own the Gazelle Supreme model, but I think any product in their line would work. Its small footprint can fit into almost any space and its reasonable price fits into any budget. Best, it is easy on the ankles, knees, and hips, which is an important consideration for people with arthritis or joint injuries.

Day 1 (10/12/16)

I felt great the day of the infusion (see my article, “Chemo – suggestions and thoughts about your first infusion“) and today.

Day 2 (10/13/16)

I continue to feel great and also expected to laze around the house, but an extended family emergency cropped up, so I was out and about. I still felt OK when I returned home.

Day 3 (10/14/16)

I feel tired today and am taking several naps. Upon waking, I hit the Gazelle for 6 minutes, walk around (or write) a bit, then return to sleep. Last night I felt weird small pains dance around my body while sleeping which possibly caused enough sleep interruption to make me feel tired today.

My appetite is good, however the difference between eating while sick in the good old days and now is that I don’t chow down on ice cream, cupcakes, or other treats. Before starting treatment, I made a big pot of grains brimming with beans. On my own initiative, I’m also taking Choline as a supplement.

Luckily, I am retired. If I needed to go to work, as some cancer patients must, I believe I still have the energy to do so.

As the day went on at around 5PM, I begin to feel pressure on my thighs and knees similar to fibromyalgia, became very tired and chilly. I’d prefer to go back to bed, but I have to put some clothing away. I’m hoping that nausea does not occur this evening . . .

I eat a bit around 9:45PM and have found warm water to be absolutely delicious! And now is time to go to bed for good. Cheers!

Day 4 (10/15/16)

10AM – a report on the previous night: As I tried to sleep, muscle spasms started going off all over my legs, from hips to feet, in a pattern seemingly similar to twinkling Christmas tree lights. At least I think they were muscle spasms. If they were something else, however, I do not know how to describe them.

I got up to try my Gazelle to see if some walking action would calm the spasms down, but after about 1.5 minutes, I felt sick to my stomach. So in good techy faith, I Googled the subject “leg exercises for hospital patients” and learned that keeping your legs straight while making circling and other motions with your feet would help a lot. And it did!

Around 3AM my urine turned to acid. OMG. This condition was unlike a common bladder infection. Fortunately, a good sloshing with cold water relieved this.

Generally, I concentrated on relaxing to avoid a headache that was trying to push through. I’ve practiced meditation since my early 20s and the techniques I learned all came in handy now.

By the time I got out of bed (8AM) I was a lot less tired than I was throughout yesterday evening and I was hungry! Given how I felt, I recommend that people who have to go to work when receiving chemo insist upon the third and fourth day off!

Early this afternoon, I am going to attend a talk given on breast cancer by Dr. Weiss of www.myEthosHealth.com. Phil will be driving me there because my attention-span is touched by grogginess.

Late Afternoon: I’ve been up and on the road since 11:30AM. The Drive to Dr. Weiss’ farm was almost two hours given slow traffic, his lecture two hours, then lunch at Cracker Barrow (I had a baked potato, a sweet potato, and broccoli) brought us home around 6:30PM, when I fell asleep. Actually, I slept in the car and had a hard time holding my head up during the lecture and lunch. Zzzzz.

Actually Sleeping: After peacefully sleeping for a few hours, the bones in my legs began to hurt. This was different than what I considered to be muscle spasms from the day before. These were actual pains that seemed to travel along the bones. After tossing for a few hours, I googled the subject.

Bone Pain: I do not have metastasized cancer, a condition where bone pain really kicks in,  My Google Search, however, describes the pain as I was now experiencing it; a pain similar to fibromyalgia, a condition I’ve managed to keep under control since my mid-20s.  To combat it, I’d get on an exercise device and work out a bit, which is what I did now. I spent 6 minutes on my glider, fell back in bed, and all the pain dissolved.  Note that 6 minutes on my feet was about all I could “stand,” as I was very, very tired and the motion suggested that I’d get nauseated if I spent more time up.

Acid Urine: Ouch! The way I’ve experienced this is different than having a bladder infection in that the urine burns delicate skin once it is expelled. This most certainly would have kept me awake at night, but fortunately, we have a bidet installed that we purchased through Amazon. Should you experience this condition, you need to flush your skin clean in some way. An inexpensive and clean way to do this is is with a plastic squeeze bottle. Should you be starting chemo, I recommend having one or more of these around!

Day 5 (10/16/16)

I am currently “suffering” from sleeping too much and not being able to stay awake. Yesterday through last night, I was constantly trying to sleep or actually sleeping, so around 1 AM, my mind wasn’t tired, although I was too sleepy to get up and do something else. It was during that period when bone pain became apparent.

I have limited my time on the Gazelle to 6 minutes so I wouldn’t fall off of it asleep after 7 minutes. The motion also suggested that I might become nauseous, something I want to avoid at all costs.

Short bouts on the Gazelle really help my attention-span. It is almost 11 AM this morning and I’ve been on it 3 times since getting up. While I have had a light breakfast, my main activity is throwing myself in some position on the sofa or bed and not moving a muscle to become more comfortable. I just sink into a dozy sleep.

Eating Advice from Dr. Weiss: Dr. Weiss recommended I start a plant-based diet in April when I discovered I had cancer and I’ve kept it up to my benefit. His recommendations for daily consumption on a cancer-fighting diet are as follows:

3 tablespoons of ground Flax seed a day. I’ve been doing 1 tablespoon, so will up that today.

1 cup of soy milk or equal amount of tofu and similar products daily

Cooked tomatoes mixed with nuts and seeds. Tomato juice.

Trader Joe’s appears to have canned tomatoes that do not include BPA-lined cans. I understood that the thickness of the cooked tomatoes would be like sauce. Later, I’ll go to Trader Joes to buy its spaghetti sauce.

Plain, white mushrooms, cooked, not raw. At least 5 large per day.

Cruciferous vegetables. I understand that these should be eaten as a combination raw and steamed. Broccoli sprouts and steamed broccoli sprinkled with powdered mustard seeds appear to provide significant cancer cell killing properties.

Beats, eaten steamed. These are very powerful cancer fighters. Note that I have no experience with beats, but do have some in the frig. I have to work up courage to try them.

Remaining afternoon: I have a slight cough and continue to feel weak and sleepy. Hope I can “wake up” soon because I’m looking forward to working on several projects.

3:00 PM – Taste is changing: I believe that my sense of taste is changing as I have become aware that my tongue is in my mouth and it is a little tingly. Strangely, my tongue looks like the picture of health. I’m still really tired, but have upped my time on the Gazelle to 7 minutes followed by flopping in bed. Within the next hour, Phil and I will be leaving to meet friends for dinner, then a concert. We’ll see if I can stay awake for this.

10:00 PM – Changed Tastes, aborted headache and fever: Happily, we went out with friends for dinner, but I was not able to sustain the rest of the planned trip, which was a concert.

At dinner, I noticed that I could not taste soy sauce and that the front, top of my tongue felt irritated. This is not the worst in the world, but I hope it does not get more pronounced.

Driving home, I slept except when a headache tried tried to creep in on various parts of my head; a bit to the upper life, then the upper right, then around my ears. Luckily my medication-skills kept it away by my repeating to my self relaxing suggestions and staying really calm.

What was scary is when I walked into the house, I felt short of breath. It took me about two seconds to drop into bed where I noticed my body temperature rising. Several temperature readings later, I went up to 101.5 and if I creeped up to 102, I would have to call the hospital. Fortunately, a wide-open window, plus little sips of orange juice reversed the trend. I got up the next day at 99 degrees.

Day 6 (10/17/16)

. . . the way I feel

It is 11 AM, and I have not stopped feeling tired. I exercised a bit (6 minutes) when I got up, but essentially, once up, I yearn to go back to sleep.

Note that constipation is a side effect of chemo. Well, I have almost the opposite. I do not want to be further than a few minutes from a toilet within 10 minutes after I eat. That, and acid urine, are a concern. So far, I am managing the situation.

Right now, I am making baked potatoes for lunch for Phil and me. This is a big change from interesting large veggie meals I made before starting this. Frankly, outside of little sips of orange juice, I could skip eating, but my research shows me that potatoes are a good option. We’ll see? I’ll have mine smothered in lemon juice. My tongue is still irritated, but is not scary painful.

Right now, I am going to take another short nap. I will report back later . . .

2:15 PM: Just work from a nap I started 11:45 AM. I could not hold my head up while eating lunch. I eat my baked potato (yum!), walked to my bed and dropped into it. I did not rearrange myself. I just dropped into it and went to sleep. I was in the same position when I got up. That is type type of sleepy I feel.

Note for the past couple of days, when I blow my nose, the discharge is bloody. This does not result in the look of a Halloween Horror Story, but something is wrong with the skin inside.

6:00 PM thru the next morning: I started feeling more like moving around without the urge to go directly to sleep within seconds of stopping. The top of my tongue burns when rubbed against something, like food or drink. I definitely lost my taste sensitivity. Drinking orange juice or tomato juice burns slightly and if they had some taste, I don’t remember what. Fortunately, I am not nauseous and am eating small amounts of natural foods, like potato. That said, any taste of salt is almost non-existent, which is good as cutting down on salt is healthy . . .

I started looking at some programs, but my attention span is still limited. I couldn’t get past the first 15 minutes of Project Runway, for example. Still, I began feeling that I was gaining energy.

Now, when I attempted to sleep, my mind was flooded with dream scenarios. OMG, I had to tap them down and use a lot of meditation techniques to quiet my mind. All were in brilliant color and very active. Generally, I seemed to be building some type of housing development. (And I couldn’t keep up with Project Runway?)

I ended up keeping one dream thread. I created a nice wooden home based on Ellen DeGeneres’ styling which rests on a long pier on a very nice body of water. It had several rooms all rustic modern. A large wooden porch. Great furnishings. Things like that. Hope I can vacation there some time in the future . . .

Day 7 (10/18/16)

I got out of bed with more energy and am now contemplating some kind of breakfast. Without taste it seems like eating is unnecessary.

9AM – loose bowels: I read that there is a crisis point in chemo where the patient doesn’t eat enough and then gets hit with diarrhea.  Could this be it? Yesterday, I didn’t eat a lot, but did have two baked potatoes, one for lunch and the second for dinner. Yikes!

So this morning before I ate a thing, I was spending considerable time in the bathroom wishing that I had a contraption like you’d find in severe nursing homes which straps you upright on the toilet so if you did want to fall over asleep, it would catch you on the can. Yes. I am tired.

I went downstairs for coffee (saving liquid) and peanut butter toast (prior to chemo, I’d have fruit including nuts or oatmeal filled with fruit and nuts as well as ground flax seed). At the moment, the type of food I’d eat really doesn’t seem to matter. I read the paper, then went upstairs to bed. Fell on the bed and didn’t move until around now.

11:40AM – Get up get up eat at Whole Foods

Before telling you how I currently feel, I must re-suggest to anyone about to get chemo, “buy a bidet from Amazon.” Today, this model was $26 PRIME. If you can’t afford it, I will buy it for you! You *must* have one.

The last thing anyone needs while undergoing chemo is a burning lower half due to acid urine or loose bowels. Really. Save yourself. There is another device (a bowl) called a “sitz bath,) but com’on. The bidet attached to your water supply that sprays you all over like a fire hose is the product to have. It puts out fires.

OK, so once again, the minute I got to my bedroom after breakfast, I fell into my bed and didn’t move until just now. And “just now” I do feel weak and my breath is a bit labored and frankly, if I weren’t worried about accidentally starving myself to death, I would still be lying motionless in bed.

Note that in my half awake state, I visited my imaginary ultra-deluxe wooden “cabin” on the lake pier and arranged furniture in my bedroom (with floor to ceiling windows overlooking the lake) and adjacent workout room, a glass cube with perfect air conditioning overlooking my surroundings on three sides. I even designed my “bathrobe” and workout clothing all of the softest fibers and all of which my staff would wash.

. . . and then an idea struck! I would not starve to death today. I’d dine at Whole Foods which serves the plant-based diet I normally eat. Frankly, in terms of taste, I really don’t care about any type of food other than I could eat small portions and someone else makes it for me. We leave shortly.

3:15PM – Eat at Whole Foods then napped: The most tempting food at the Whole Foods buffet were the mashed potatoes. I tried, however, for the first time, Vanilla Soy Milk and found it removed the roughness on top of my tongue and quite a bit of pain. Note that when I say “pain,” the tongue-thing was more of an irritation coupled with reduced taste BUT Vanilla Soymilk offered a significant relief.

Luckily, the table in the shop’s cafe was right next to the restrooms. It is apparent that my body wants to get the poison (chemo) out of me and has no regard to whether I’ve been eating or not.

I also have to be careful about how I move. Under no circumstances do I want to experience nausea, so if I feel the slightest bit of discomfort, I slow way down.

After eating, we returned home immediately. The day is bright blue and fall colors are here! Tomorrow we will go for a ride. But for now, I fell into bed and just work up. I am about to have some coffee and stroll around the living room for ten minutes. Hopefully, I will pick up steam, a bit of food, and maybe the desire to go for a walk outside.

4:50PM – 10 minutes continuous walking: Wow! I just walked back and forth across our living room for 10 minutes! No joint pain. Good strides. Feel great! Although, of course, I’d like to take a nap. The vanilla soy milk really rested my tongue and now I am sipping small amounts of orange juice.

If you want to try vanilla soy milk, but you live in a small community, Amazon to the rescue with various products for shipping. Frankly, I was very reluctant to try it, but after getting over my expectation prejudices, I was very pleased with the way my tongue felt after sipping it. Actually, it turned into a huge relief! My tongue isn’t 100% back to normal, but it doesn’t burn when drinking a cool liquid and I’ve regained quite a bit of my ability to taste things.

10PM – brain and tongue came back: Well, I started to be able to think cohesively around 6PM and my last living room walk lasted 16 minutes! I should be able to get back on my Gazelle glider tomorrow. I’ve eaten more of the dinner I started at Whole Foods earlier in the day and had a glass of orange juice and tomato juice without feeling lime my tongue was going to burn off. I also stopped running to the toilet, so I hope tomorrow I start going back to normal.

No sign of hair loss yet. The approximate timetable is two to three weeks after chemo.

Day 8 (10/19/16)

11:15AM – brain normal, breathing a little heavy: Amazingly, I was able to watch TV and read last night, no bathroom runs, no extreme fatigue. My knees were a bit swollen from walking around the living room, but other than that, I felt good.

This morning, my tongue was still a bit tender, so the first food I had was a cup of vanilla soy milk, followed by some “rough” food that would have been painful to eat the day before. Outside of labored breathing which makes me a bit drowsy, I am looking forward to lunch and doing some of my normal activities; things I look forward to.

Soy Milk: If I did not have the soy milk yesterday, would I still be feeling confused today. I wonder if anyone else ever had this experience. It would be a nice antidote for chemo. This article suggests that soy milk can have a positive impact on chemotherapy – Soy, May 2006 in LifeExtension Magazine.

Chemo Blogs: I plan on finding good blogs on people’s experiences during chemo and will list them on a reference page. Claire’s Blog takes her readers on a journey through all her procedures and seems to end in 2010. It’s very informative and would be helpful for people just starting this journey themselves.

Day 9 (10/20/16)

Since drinking that cup of vanilla soy milk, I’ve felt 100% normal. That said, late last night when in bed and this morning when getting out of it, I experienced vertigo so extreme that it knocked me backwards. I’ve been up now for a couple of hours and it has not reoccurred.

I saw my oncologist mid-morning and had a wonderful discussion, with many details of it following up the notes I made in this diary. Top points:

I weigh 172 – now down from an original 205!!!

My breast tumors shrunk considerably and my nipple is looking normal

I currently do not have a bone pain in my body. Places where I have arthritis (base of spine, right hip, and injured knees) feel 100% clear, like I have never had a problem. Soy milk effect?

Soy milk is excellent. My oncologist (Dr. Siu) is Chinese and he and his family drink a lot of it, plus regular soy, and it is popular in China. He highly recommends it!

And he recommends bidets! He has them and said they were common in China and Europe, but not in the US.

He looked over the foods recommended by Dr. Weiss and supports the plan.

I am currently in the low white blood cell count period in my treatment and will be for the next few days. If I get a fever that reaches 100, to call him immediately.

He explained how treatment affected my tongue, acid urine, and now, vertigo. I lost balance again in his office, so I am glad I demonstrated the effect! At any rate, I need to remain healthy.

The chemo infusion burn on my hand is best treated with ice, which I had been doing.

His office will fax materials to Sloan Kettering for a second opinion on surgery

And he loves this diary, will continue monitoring it, and will adjust my next chemo dose depending on what he learns from it.

Tomorrow, I see Dr. Weiss to discuss nutrition. Dr. Weiss has one foot in traditional medicine and one in nutritional healing. His advice to me has helped me up to now. At this point, I am balancing chemo and surgery against natural healing. I’d like to think that there is someway to integrate everything so it all works better together. We’ll see.

Day 10 (10/21/16

I met with Dr. Weiss today, the physician who got me started on the whole-food, plant-based diet. Since then (early May), I have been exclusively vegan. The results? Since that visit:

I’ve lost 33 pounds total

I no longer have fibromyalgia

My blood pressure is significantly lower since any time that he has known me

I have no “arthritis” pain at the base of my spine, right hip, and knees

And my cancer tumor has been shrinking

That, and I’ve  recovered from bowel cancer surgery very quickly.

I am currently in Stage 2+ cancer, which means it is curable, with the current recommended therapy to shrink the tumors and remove my breast. That said, I am going for a 2nd opinion as to how to proceed with breast surgery.

Frankly, if I had a poor prognosis for recovery, I would not do chemo at all, nor would I chase cancer around my body until I did from old age (I am 72.5). I am not happy about subjecting myself to chemo and as part of the next step am trying to find out how little of it I must be subjected to.

I am not sure if the second opinion can be arranged for next week, although I’m hoping it can be during the time I have the most energy before the next session.

Days remaining in this cycle

10/22/16: I have decided to document the entire experience. At present, I am in the phase where I am might likely to catch something. I have, fortunately, regained my full capacity to think and have actually started picking my my scarf design work again.

Dr. Weiss – Plant-based diet: After I’ve been cured of breast cancer, I plan on returning to the doctor who has images of my lower spine, right hip, and damaged knees. The reason is that since starting on the plant-based diet, 100% of the pain and weakness in those areas is gone. If new images show no arthritis (roughness around the bones) and reduced wear in the hip (or new bone growth), that will be a powerful testament to how the PBDiet can help the body regenerate.

Thoughts and Decisions: My oncology team insists that I have a very good shot at 100% cure because my tumors have not advanced to stage 4 and that I am very healthy. My issue is, and the reason I am seeking a 2nd opinion on surgery, is that chemo hurts many parts of the body while shrinking cancer. This includes the nerves, heart, and respiratory system. I would like to drop chemo ASAP as there is the suggestion that my tumor size is within surgical success range. I see no reason to have one drop more of chemo, just because blasting it with four doses is considered the most conservative practice. IMHO, there is nothing conservative about poisoning my body to save one part.

The other issue is whether I’d just go the dietary healing route and see if tumor growth stops or continues shrinking. The only reason I’d do that is to be monitored monthly to make sure things don’t reverse themselves, and to date, I have not found an option for that to happen.

10/23/16: The will finish this diary, although I might make a note when my hair starts falling off. Between now and my next one, starting on Monday, 10/31, I will post at least three travel articles.

At this point, I am very careful about how I eat so I don’t introduce any aggravation into my system. I do not want to be attacked by nausea.

Also, for anyone who might feel like a bladder infection is coming on, I strongly recommend taking a supplement called “Cranberry with d-mannose.” I read about it some months back in a health newsletter and it works. For me, it usually works after 4 pills, taken 2 at a time, maybe 4 or 6 hours apart.

Last, I have no pain at the base of my spine, right hip, or knees. If this is a product of eating a vegan, plant-based diet, I hope that you take notice. After all is said and done with this cancer, I plan on seeing my Orthopedic Surgeon and having scans retaken to see if there is a difference. Check this link on food and arthritis on nutricianFacts.org.

10/25/16: I’ve had a light cough on and off, but around 6PM, it started getting worse and I began a fever which, at last check, was 99.9 degrees. Fortunately, a large mug of tomato soup reversed the trend and I returned to normal. I’ve continued the sniffles, however, and a light cough.

10/27/16: Ugg. Hoped to be over side effects of chemo by now. Last night, I got up to go to the bathroom six times. It was like for every quarter-cup of liquid I drank, a quart came out. I also began feeling burning crotch again, and worried that I had a bladder infection. Going to the toilet continued for most of the day, both dedicating and urinating and feeling an impending bladder infection. I have no idea where all this stuff was being held in my body! I took 6 cranberry pills throughout the day as well as numerous naps. By 6PM I started feeling feverish, but my temperature only went up to 99 degrees. By the end of the evening (11PM) I began feeling normal again on all levels. Note that I made terrific use of the bidet! While this probably seems like too much sharing, if you or a loved on has had chemo and is in the last week before a new session starts, being aware of what might happen has a lot of value. My number one objective is to not get a bladder infection. As my white blood count is down, I could be very susceptible to infections and I’ll do whatever it takes to fight them off.

10/28/16: OMG! I am now noticing that I am losing hair! After a shower this morning, I noticed a few short-cut hairs on the sink and thought that they might have been left there by my husband trimming his beard, although that would have been very unusual of him. Shortly thereafter, while sipping my morning coffee, I noticed short hairs all over my black, fluffy bathroom and realized that these were from my head. Returning to the bathroom sink, I noticed a lot more, then saw many more after checking my pillow.

Note that prior to chemo, I had my head shaved to just under 1/2″ lengths. For some reason, my hair is even shorter now (I expected that I’d have some growth on my short hair, but none occurred). Now I can see little rivers of “no hair” among what existed after shaving. Further, if I pet my head, lots of short hairs float down onto my shirt and desk.

I wonder if this is part of the “sick” process I experienced the day before.

Anyway, yikes! I am glad that I was prepared for this event because even though I knew it would happen, it still freaks me out a bit. We went out later in the day and I did not wear my wig because I was afraid that its rough interior surface would “saw off” more hair and I did not want to withstand a snowstorm of falling hair when time to take the wig off.

I will post my hairless look when I start my next Chemo Diary which will document the second infusion period and how it is the same, better, or worse than the first.

10/29/16:  On my next diary, I will have more information about acid urine, UTIs, and the effort to keep pain away. I have now, however, found some reference to D-Mannose, which I will take 4 to 6 capsules a day if I feel like a UTI is returning. I am currently ordering mine through Amazon (NOW – 500 mm of D-Mannose). It is not a common product (it is usually sold as “Cranberry with d-mannose”) and you should be able to get it through the Vitamin Shoppe, or other specialty dealers if you have one locally. Last I checked, Walgreens did not have it, but you definitely should check your local pharmacies, too. Anyway, you can get it through Amazon and it has several brands to choose from.

Two articles on the subject are D-Mannose for UTI Prevention Validated in a Clinical Trial by Dr. Mercola and a very recent article, D-Mannose Destroys Urinary Tract Infections published by Health Impact News. You can also search the Internet on the subject. Be aware that any type of crotch pain can make it exceptionally hard to think and function normally. And if it gets out of control, you can ruin your kidneys. so stay alert!

Links

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 in October 2016. All rights reserved by Karen Little and Littleviews. Questions? Please contact Karen at Karen@Littleviews.com.