Category: Health & Fitness
When I was first diagnosed with breast cancer, my husband saw an article on proton radiation therapy, which is supposed to be gentler than photon radiation. Currently, there are around 25 proton radiation centers in the USA and fortunately, one is in New Jersey where I live.
We didn’t think more about the subject until my breast surgeon and oncologist insisted that I have radiation therapy after the mastectomy. Luckily, the surgery was done at Memorial Sloan Kettering and the oncologist there (Dr. Oron Cahlon) was one of the directors at ProCure, the very proton therapy center we read about.
My first of 30 days of radiation therapy began on March 8, 2017.
Upon entering the facility, I clipped on a name tag that had a bar code on the back. Once registered, ProCure’s staff knew I was in the facility and called me when my appointment was ready. Once called, I stripped to my waist and slipped into a cotton gown.
Prior to my first day, a mold of my torso was made from foam that turned hard within 15 minutes of being activated. When placed on a table in the proton therapy room, was covered with a white sheet.
The picture below shows the position I took when laying in the mold.
Below is a picture of the therapy room. On the far left, you see the mold’s shape under a white sheet. The blue wedge (middle of the picture) was slipped under my knees after I mounted the table.
Behind the blue wedge is the proton machine’s “snout,” which is what focuses and delivers the proton “beam.”
To the right of the picture are brass disks that feature a cut-out designed by the radiologist in charge, which in my case was Dr. Cahlon. When attached to the snout, the hole guides the proton beam to exactly where it is needed on the patient’s body.
My radiation involved at least two disks that targeted my left chest wall, my left arm pit where lymph nodes were removed during the mastectomy, lymph nodes under my left collar bone, and surgical incisions.
Once the procedure began, I was left alone with the snout while the radiation staff disappeared into a control center. All but 26 procedures required that I be under the beam for four times during an hour session, with the last three sessions only two times. My husband, meanwhile, spent 30 days in the waiting room reading USA Today (when available) and cruising the web.
I started therapy on March 8. By April 1st, I was confident that I’d breeze through these therapy sessions, even though I was told I would receive a skin burn mimicking what I might receive on a hot, sunny beach at high noon. At this time, my skin was just beginning to turn red and I felt there was nothing to worry about.
Ten days later, on April 10th, however, my skin turned a leathery deep red.
(Note that the picture below is a mirror reflection. The treatment is on my left side.)
Shortly after I took the above selfie, my skin began to split and peel, much to my alarm. Within the last 7 days of my therapy, I stayed in constant contact with my doctor and the radiation nurse questioning whether my experience was normal. Quitting the therapy was constantly on my mind.
Everyone, including the therapy room staff, told me that I was the poster child for “normal outcomes.” OMG! Frankly, the treatment itself did not hurt, nor did I get any side effects that kept me from living a “normal” life. It was only the gigantic burn, splitting skin, and pain from splitting skin that concerned me.
I did, however, have pain-controlling creams and took ibuprofen as needed, so did not become crippled, but I was, quite frankly, fearful for my life. Being systematically roasted by a proton beam produced results far different than getting a sunburn at high noon. Not only was my skin burned, so was all tissue beneath it.
As it turned out, my skin re-grew. In the picture above, which looks grizzly, the bright red skin is new and the brown is falling off. Although my torso looked awful, I was ready for “therapy graduation” on April 19th, which marked my 30th day under the snout.
For the graduation, I wore my Aztec goddess T-shirt adorned with female warrior Aztecas. Her strength and healthy left breast inspired me!
Graduation – Cancer Therapy Is Over
ProCure hosts regular therapy graduation events in which a guest speaker (who’s been there and done that) leads the ceremony, graduates give a short talk, and everyone dines on excellent sandwiches.
In summary, here’s my short talk:
When I was told I had breast cancer, I had to choose between life that included a lot of scary therapy and death. I chose life. During the past 12 months, I have had my cecum (area of the bowel) removed, experienced four chemo treatments, was hospitalized for salmonella poisoning, had my left breast removed, and had been roasted for 30 days under the snout.
When I left the facility, I then rang a brass bell three times to announce that I was cancer free.
At the graduation ceremony, I received a magical “Hope Blossoms When It Is Shared Coin,” symbol of all the good work done. The number 2563 indicates that I was the 2563rd patient at ProCure who made it through radiation and kept on smiling. Hopefully, this article will help others.
. . . oh, and about my hairdo. I love it and plan on keeping it short forever after, but I do hope my eyelashes grow out.
Thanks to . . .
I appreciate all of medical professionals that I met at the Hackensack Radiology Group, the Hackensack University Medical Center and Dr. Marson Davidson, who spotted my potential colon cancer, the Holy Name Regional Cancer Center, and ProCure, the proton radiation center, all in New Jersey. I also greatly appreciate everyone at New York’s Memorial Sloan Kettering Hospital.
Also a big thanks to Dr. Ronald Weiss, founder of Ethos Health, who recommended the book I follow, “How Not to Die,” and Dr. Luke Eyerman, a family practice physician who made all the above medical connections for me.
This diary is written by Karen Little and recounts her experience with cancer treatment. All photography on this page is 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.
I had my mastectomy on Friday, January 13, 2017.
I was brought up to believe that Friday the 13th represented a day of change and because many people are afraid of change, having anything done on this day is to be feared. In my case, it was clear that having a mastectomy marked a great change in my life, so I accepted it on a surgery date
The surgery was performed in the year-old Memorial Sloan Kettering Josie Robertson Surgery Center, a truly stunning hospital behind the bank of large, silver windows seen below.
Located at 1133 York Avenue at 61st Street in New York City, all windows framed the majestic Queensboro Bridge and cable car. The picture below was taken around 7:30 AM in the main waiting room.
Unlike general hospitals, this facility is designed for in-and-out cancer-related surgery. I arrived early and was scheduled to leave the next day by 11 AM. I was ushered in to a single room where I met the surgical team. The anesthesiologist told me that once I was put under, my body would be placed on life support with equipment doing the living for me. When I woke up, I’d have no memory of the event.
When I did wake up, I repeatedly asked my two nurses whether the surgery took place. All I remember was being wheeled into the operating room and covered in a warm, bubble-wrap blanket. The picture above is me after surgery. I have no idea how I had the presence of mind to put on my wig.
Phil stayed overnight in my room. In the morning, he was taught how to tend to my Jackson-Pratt drainage system, we eat breakfast, then headed home.
The picture below was taken three weeks after the surgery. The two round spots are from where lymphedema fluid drain tubes were attached to me. The straight line is where my breast was removed, and the curved line, where lymph nodes were removed from under my arm. Out of the 12 found, six showed a trace of cancer that probably had been eradicated through chemo, and one contained a cancer cell.
From this time forward, I must be very careful that I do not allow lymph fluid to collect in a condition called “lymphedema.” As of late April, that has not happened.
The picture above was taken around two weeks after surgery and around a month after my last chemo therapy period. My hair and eyebrows are but fuzz and I lost my eyelashes. Still, other than having tubes attached to me via pockets in a special garment which I’m wearing in this photo, I had very little pain after the surgery.
Technically, at this point I became cancer-free. Unfortunately, one more step was needed to really stamp out those cancer cells, radiation, which will be the subject of my next article: Radiation – Karen’s last cancer treatment
My oncologist is Dr. Karleung (Sammy) Siu, who practices at Holy Name Regional Cancer Center in Teaneck, NJ.
My surgeon and radiologist both practice at Memorial Sloan Kettering in New York City. They are Dr. Andrea Veronica Barrio, breast surgeon, and Dr. Oren Cahlon, radiologist.
This diary is written by Karen Little and recounts her experience with cancer treatment. Except for the picture of the Memorial Sloan Kettering facility, all photography is 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.
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.
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.
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.
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.
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.
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!
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:
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.
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.
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.
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:
Hopefully you can see where my prints are disappearing. I keep my hands lubercated, but you can also see where peeling occurs.
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.