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

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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.

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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.