Is it just me? I'm having terrible side effects from chemo.

Holy cow! That is a lot. Well, I couldn't work at all now but I'm finally accepting that. I get one good week. Although that may change. But even in the good week, I'm still tired and run out of steam before I get everything done. Thanks so much for reaching out.

Chemo had me asking myself how far I would go to stay alive. Infusion 1: Nobody told me that my digestive tract would shut down; they just told me to eat small amounts multiple times a day, but not what to eat; so I developed a painful bowel obstruction. After that I only ate foods that practically walk through on their own, mostly fruit with cottage cheese, veggies, and soup. I dropped from 125 to 112 pounds. Infusion 2: I was being infused with twice as much steroids as I could tolerate. I went through 72 hours of cold sweats after my first 2 infusions; the chemo and palliative care departments insisted it was depression, which is nonsense and about like calling a woman hysterical. Infusion 3: The steroids were cut by half by the third infusion, and the post-infusion nightmare did not occur again. But nobody told me that the docetaxel infusion was in a solution of ethanol. I couldn't even walk out on my own steam after an infusion. I didn't know what was happening to me until I Googled "chemo" and "drunk." A nurse even asked me once if I "really" needed a wheelchair. Yes, I really needed a wheelchair because I was drunk as a skunk. It's a good thing my husband always drove me to appointments.

While the chemo dept. always says, "everyone is different," the worst side effects I had were well known and could have been avoided. I'm pretty sure most humans react the same way when being infused with ethanol. "I'd like some poison with my poison, please," said nobody ever. Alcohol is a Class 1 carcinogen, in the same category as cigarettes, and I had not had a drink in 13 years.

If I had to do chemo again in the future, God forbid, I think it would go much more smoothly; assuming I agreed to do it again. But this learn-as-you-go business is a huge drag. Ironically, oncologists who get breast cancer are shocked -- shocked! -- by the cancer patient experience. Were they listening to their patients at all? Did they not know how much their patients were suffering? They are surprised that their concerns are casually blown off. Then they write a book or start a Youtube channel about their own experiences because they're experts with a story to monetize!

I also had chemo brain fog. I have a master's degree in English, as well as a J.D., but I was unable to read or spell as my I.Q. temporarily dropped about 40 points. I got slight neuropathy in my toes. I had dizzy spells and fainted a few times. I had a slight but persistent nasal drip after my nose hair fell out with the rest of my hair. Chemo dried out my skin, which, despite constantly drinking water, has only started to plump back up and stop shedding 6 weeks after the last chemo cycle ended. Black clothes were out until the shedding stopped.

Hang in there. I had Invasive Ductal Carcinoma, too, and recovered my immune system and energy one month after the end of the last chemo cycle. I'm 63 years old.

Thank you so much for this; it is a powerful feeling to be validated. I had an appt with the oncologist yesterday just after reading your post. It went very differently. I have chemo today, my third round but I have more meds to deal with the side effects. I told her Everything that is going on, and it really seemed that that was the first time she stopped being busy and with one foot out the door to her next patient. So, thank you for that too. I'll see what this round brings, but I must say, I am not as frightened and I am more prepared. Speaking of which, if you don't mind, what would you do differently if you had to do it again?
Thank you again, so, so much,
Kay

I wish I could bundle up this post and put it everywhere. You so eloquently wrote what we all should have been told before our very first infusion.
Thank you for sharing this, I hope that you continue to share your journey as you hopefully move out the other side of treatments.
@kayanonsen how are you doing after your latest treatment?

Things I would do differently plus advice:
1) I would eat throughout chemo like I did after a trip to the ER for that bowel obstruction.
2) My superwoman neighbor, who has been through chemo 3 times for 3 different stage 3-4 cancers, advised me not to eat anything acidic during chemo to avoid mouth sores. I did as she advised and was spared that complication.
3) It's not fun researching to find out what is wrong with you during chemo after medical providers blow you off. If you have an egregious side effect, insist on being heard and taken seriously. If you remain baffled after your first inquiry, it's not your fault and you are neither crazy nor hysterical. Or, you may have someone, a friend or family member, who can break through that brick wall for you. If a nurse screening messages blows you off, as happened to me several times, try to get through to the doctor, who might already know what the problem likely is.
4) Ignore all who urge you to exercise during chemo if you're not up to it. While we all get why exercising during chemo would be ideal, some seemingly common sense advice is not necessarily realistic for everyone. I'm 64, not 24. I was fainting and having sinking spells to the point that I could have passed out during a walk, or even walking around my own home. I decided not to even attempt to drive my car. So when the oncology professionals kept insisting that I exercise during chemo, my standard response eventually became, "You first. Try a few rounds of chemo, hit the trail, and report back to me."
5) Rest, rest, rest. Fully healing from cutting, poisoning, and radiation over a period of months takes a lot of energy. Give yourself permission to be totally useless during this ordeal. I did.
6) Drink lots of water. More water than you might usually drink to avoid everyday dehydration.
7) People don't seem to understand that the end of all this therapeutic destruction is not the end of healing for us. Be clear and firm without guilt about what you need. After getting a good look at my own mortality, it sank in that I don't have to explain or justify anything to anybody. "No" really is a complete sentence!
8) Passive-aggressive or merely tactless people may say things to you that will blow your mind. Consider it a gift and try not to take it personally. When somebody shows you who they are, especially in your hour of need -- believe them. You don't have to say a word to them; they wouldn't get it, anyway. One woman remarked that it was my "choice" to lose my hair. Another told my bald self that I would look so much better with a little makeup. And even worse things were said. Now that I've crossed over into the Cancer Zone, I'm eliminating toxic people and things from my life, everything from processed foods and carcinogenic body products to a self-centered diva next door. I gave the diva another chance, and she turned out to be an incorrigible repeat offender. My mistake. Peace of mind is extremely important for healing. Say Buh-bye! to toxicity.
On the flip side, the people who do come through for you, who in my case far outnumbered the jerks, you will treasure even more than you already did.
9) For the hair if you lost it: There is reputable scientific evidence that a few drops of rosemary oil mixed with a small amount of scentless carrier oil, massaged into the scalp, is as effective as minoxidil in regrowing hair. There are Youtubes about making your own rosemary and oil concoctions. Don't waste your money on a pre-made product with rosemary in it - there's no way to tell how much or how little rosemary is in the product, unless you personally know and can ask the chemist who created it. I think it made me feel better during chemo to be able to do something simple to help myself schlep toward recovery.

I hope some of that helps. XO GJ

well, you are wonderful, and I am so glad I found you. I have not been able to shake this thought; "you shouldn't feel this weak, you should push through, you should try, you shouldn't eat too much, you shouldn't eat that... you should try to work, you should try to walk, you should try to do yoga, you should you should you should you should."

I just looked at my last blood lab results and see I am anemic and have low potassium. No wonder I feel so tired!

I am increasing my water intake, you know I think I'm drinking water but when I record it, it's only about 2 to 3 glasses a day. I can do better than that.

I like the idea of rosemary. Smells so nice. I'll try that, thank you. I find that I smell so awful, and so does my bedroom. Now I've got rashes under my breasts and they smell too. I've been using an essential oil diffuser in my room as well as scented candles, to get rid of the smell. My brother was visiting and he said he didn't smell anything. So, I don't know.. it actually adds to my nausea. So, yeah, rosemary on my scalp is a good thing!

Thank you so much for taking the time. I love your honesty and frankness and saying it all out loud. Plus your writing is a joy to read. I don't know if I mentioned, I am 67 and I am looking after my son who had a very bad motorcycle accident last year. Our lives are challenging right now but people like you ease the load. Thank you so much.

I've had 3 chemo rounds so far. I have what I call baboon butt. My oncologist gave me a cream with no refills. That's my next stupid chore, to her track her down, and ask for some dam refills on that cream. My next round is feb 16th and then I'll be at 4 down, 2 to go. This has been awful and most of the awfulness has been around the lack of information and the feelings that I wasn't measuring up as a good, tough breast cancer patient. At least I've kicked that shit out the door. 🙂

Thanks again,
Kay

You're not the Lone Ranger as to any of this. During chemo, my armpits smelled like a dumpster. Poison is discharged by the body in a number of ways, including sweat. I didn't get baboon butt, but my butt looked like 2 half-deflated balloons after I lost so much weight. I'm so glad I was able to help a sister breast cancer patient.

I am so sorry about your son. Moms hurt when their children are hurt. The object of my maternal worry is 31.