My Chemotherapy Journey
Comments
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Nosebleed today. That sucks. Because of the IV transfusion? Or because I have been neglecting putting saline gel? I also have not been getting out of bed or doing my 1 minute exercise.
I feel so weak and just shitty that I barely get out of bed, The IV transfusion did help. In that I feel good today.
STILL no appetite. Food is tasteless or bitter or unappetizing.
I also can feel my lower gum kinda swollen. Yes I am also neglecting my baking soda and salt water rinse, I will definitely use my leftover chlorhexidine gluconate oral rinse it is also used for gingivitis. I was prescribed that when my wisdom tooth was extracted. Hope that takes care of that.
Oh that sore/'burn' down there are now full blown boils - like LITERALLY. I turned over and pop!!! oh…my God…
I froze in fear for hours by the time I got the courage to stand up I had to change, I had to clean… UGH.
Nasty.
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Sorry you are going through this. It sounds really horrible. May God give you strength.
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Thanks. It really is. I hope if I live through this. One day I will read all this and say yeah - I survived all that.
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Well the hydration infusion took care of the nausea and over all shitty feeling and weakness.
It did not get rid of total loss of appetite. It did add :
nose bleed and watery diarrhea.
UGH. Before the IV infusion I only have loose bowel movement. I just bought a saline spray. Hopefully now that I can get out of bed, and do my saline spray regularly it will solve the nose bleed. Too scared to take imodium again so hopefully the watery diarrhea does not continue.
I wonder if me drinking my smoothie triggered the diarrhea.
Really scared of round 3 chemo as early as now. Please no more surprise side effects. Have mercy.
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I am surprised to not have any new symptom today. That's good, I hope. Nosebleed is taken care of by the saline gel/spray. Diarrhea seems to have stopped. Thank God. No imodium needed!!! The boils are still there, unfortunately. That is the one that's bothering me. What bothers me most is my Dr. or the nurse seem to not have any medication recommendation for it. WTF. Am I surprised? NOPE.
I have seen my urine test result. No bacteria. So it's in my blood then? Great….. They have been doing blood work regularly and no one bothers to tell me if they seen something there? what's causing my boils Dr.? UGH. She's also apparently a hematologist. What a quack I have right here.
Just…. so over this DON'T care team.
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I can tell you what's causing these issues. As can anyone who has been on this journey before you. Chemotherapy is causing these side effects. It is in your blood because they have infused it into your blood stream in order to kill the cancer. It's not hard to understand. Chemotherapy is STRONG medicine. It causes side effects. If you would educate yourself about Chemotherapy side effects, you'd probably not be so dramatically panicked about normal reactions to the STRONG medicine you have been given.
The reason no one told you it was in your bloodstream, is that you watched them inject the strong chemicals (Chemotherapy) into your bloodstream. They're not negligent, they're just assuming a very basic level of understanding of what Chemotherapy is. It is an injection of strong, cancer killing drugs directly into your bloodstream, in order to keep cancer from killing you. It comes with predictable side effects.
I hope you can find ways to be less stressed about your treatment. It will help you to get a better outcome. Good luck.
Trish
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Pneuma - I’m sorry you are going through this as chemo can be very tough. I’m concerned that your care team did not adequately prepare you for what to expect. Your medical oncologist will be part of your longer term care so if you don’t have confidence in them I strongly recommend changing doctors as soon as practical. While a cancer diagnosis is daunting, it’s critical that you are an active participant in your healthcare and this includes finding a team that you trust
I’m currently undergoing chemo and prior to starting I had a lengthy meeting with the MO and oncology nurse to review my treatment plan in detail including side effects and the likelihood of each along with what to do to mitigate their effect. I have a 24/7 phone number to contact them if I have any concerns although I’ve only had to use it one time. I also had to sign off on the treatment plan indicating I was in agreement. This process will vary among facilities.
It is typical to have your bloodwork checked prior to each infusion to make sure your body can withstand the harsh effects of chemo. I review my results with my MO and ask about anything that is outside of the normal range. My fourth treatment was delayed due to low platelets. I’ve also had very low potassium which caused heart palpitations as well as my absolute neutrophils are dropping with each treatment. I’ve been getting a Neulasta injection the day after chemo to boost my white blood count.
In reading this thread I can see you don’t like taking any OTC meds and that is your right. However, you may be making it tougher on yourself by refusing to take meds that may help you feel better. It is critical to stay hydrated and to eat while having chemo to help your body heal. If cannabis works for you that’s great, but I would tell your care team so they can make sure it doesn’t interact with anything they are giving you.
This is a very tough time for you and you are definitely allowed to worry but I don’t see any of your side effects as surprising. Rather they seem normal and what many, many people experience when going through chemo for a variety of cancers.
I have refrained from posting previously because I think your feelings are valid but please remember your care team is human and if you are treating them less than respectfully they may be less inclined to go above and beyond to help you. I did not like my care team with my first cancer diagnosis and tried to change however it was at the height of Covid so I was unable to get appointments with another oncologist in a timely manner. It made a difficult situation even tougher. I’m very comfortable with my care team for my second diagnosis and it has made a world of difference even though it’s a much longer drive.
Sorry for the long reply. Please also note that you are posting in a public forum and in doing so you are opening yourself up to comments, some of which may disagree with you.
Wishing you the best.
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Again, pneuma, no one wants to diminish or invalidate your feelings. What we hope is that by understanding your situation and everything that goes along with it, you will see that nothing you have gone through is cause for concern and your stress/anxiety level will be lowered. Yes, it is all new to you as it is to anyone going through a first chemo experience. Usually, understanding what to expect or what could possibly happen during a treatment helps allay fears. Perhaps a better understanding of medical terms/procedures would be too. I think most MO’s would assume that you would understand that intravenous means into the bloodstream. Has your sister, the doctor, been able to explain some of the things that are worrying you? That might be reassuring. Also, understanding what is not related to chemo is important too. Do you remember that old saying, knowledge is power? Not only is it power, but it can go a long way toward alleviating anxiety and stress. Take care
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My patient navigator phone appointment from Komen foundation is tomorrow. I will just tell her I want a new care team. I don't like my current one. I hope she can help me with that.
My Dr. is just horrible. before my round 2 she said: your neutrophils is up because we gave you a shot which I presume is that neulasta.
My neutrophils was low and then it was up. So I don't know how that happened?
But I told her no. I didn't have shot! Like what the hell is wrong with this Dr.?
Telling me I have a GERD when I don't have it. Telling me they gave me shot when they didn't!!
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Speaking of the Komen foundation navigator. I just got a text from her telling me to disregard her VM. She apparently probably cancelled tomorrow's appointment but she texted me to disregard it and our appointment is still on.
I told her I didn't get the VM anyway, LOL. So no problem. So I guess we are still on tomorrow.
Nosebleed and diarrhea still. but I honestly prefer these side effects. Because I at least can get out of bed. Do my chores. Force myself to eat.
I am no longer nauseous. Allelujah. I will be VERY happy if I can get a new care team.
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pneuma,
So glad you are considering changing doctors as being confident and comfortable with your care providers is important. You have always had the power to change doctors, so not sure why you’ve continued seeing your current group, but hopefully the nurse navigator can show you how to do this. Take care
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Talked to the Komen lady. She's nice. Not sure if she can help me though. I don't know anymore. Maybe my husband is right. You can change doctors but you still can find something wrong with them.
Maybe I am the problem. So I guess I should just suffer in silence and grin and bear the side effects. Since even if I tell them, they can't be bothered. I was going to update them on mychart - the effects of the hydration infusion that it gave me nose bleed and diarrhea but I just give up. They won't care anyway. Just finish my chemo.
4 more, then just ditch this Dr. I don't know anymore.
At least I feel good. My free food delivery from unite for her came today. So aside from ready made just microwave and eat foods. They also have those they give you exact ingredients and give you the recipe to follow and cook it. That's what I did. I still have no taste so who knows if it's good. At least it's edible to me, LOL.
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Glad to read that you feel good….thats positive. I still think you need to feel good about your team, you may not agree with everything but you should have confidence imo. Well I feel awful today and yesterday….horrible headache, NO energy to do anything but sleep or sit, NO tastebuds left, eyes hurt to open and close. I'm hoping this afternoon will be better, if not, tomorrow will. Great you felt well enough to cook a box meal and eat it 🙌
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Glad to hear that you are feeling better.
Your husband is right. There is no perfect doctor because they are human and humans are not perfect . I would also like to suggest again that , perhaps, your current medical team is not ignoring your side effects but rather they don’t see anything unusual or of concern. Everything you have experienced seems completely within the range of expected side effects of chemo with no reason to be alarmed. They may not be acting overly concerned because you’ve not exhibited anything to be concerned about. That being said, since you have no confidence in them, it might be best to switch.Has your husband or your sister, the doctor, tried to explain that while no fun, all of your side effects are within expectations and that may be why the doctor is not worried? Have you worked with your sister, husband or someone who can help you understand some common medical terms so that if something is given via IV , you understand that it is entering your bloodstream? It may really help you to allay your anxiety if you focus on facts. Take care
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Yes. Agree about the 'team'. But I just want to finish my chemo and be done with this. Most of you guys who have experience in chemo side effects all say most of what I am experiencing is common. So I guess it's a good thing. So hopefully no more new ones though….
Sorry about your SEs I literally have experienced those recently so hopefully you feel better. I did. And you know you will!
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Yes. I hope you are right that my SEs are not unusual or of concern. That I am just over reacting for nothing. What I hope most of all is for this chemo better work. That is ALL our end goal here. To get rid of this cancer. And go back to normal living. Although I don't think there is escaping this hideous disease.
My sister is also undergoing chemo and I really rather not stress her more. I want her to focus on her own treatment. But if I really need her help, I can text her. I just prefer not to at her condition.
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Looooooooooooooooooooooooong day today. Info overload I hope I remember everything that happened today. Here goes:
Today was diagnostic ultrasound and breast surgeon appointment. First - ultrasound:
A resident entered the room. She's the one that did the ultrasound. After she's done I asked - did it shrink? Unfortunately - NO. Then came the radiologist. She basically checked the resident's work. Did some scans. Basically said the same thing and seen the same. She asked how many rounds of chemo I had so far. I said 2. She said usually by round 3/4 it will just melt. Ya. I hope so………… They gave me a paper that they recommend to just follow up with what the onco tells me to do. In my head I was like NO!. LOL. I want to change my Dr. LOL.
Then breast surgeon next. Again another resident. Unfortunately… it's a male. Bummer! Fortunately my 2 sisters were allowed to come with me in the room! So he probe my boobies. Not happy at all. But it must be done. I basically whined to him about my oncologist that I want to change Dr. that it seems her team does not care. Told him about my MRI, PET scan, not being discussed with me. But there is one important thing that came good with this resident. I FINALLY know what these boils are called! He said have you heard of HS. I swear he said it's hydroplasia but I just googled and HS is -
What triggers Hidradenitis Suppurativa?
Hidradenitis Suppurativa: The Recurrent Boil Problem that Nobody Talks AboutHidradenitis Suppurativa is typically a genetic condition but can be influenced by hormones. It often starts around puberty and can worsen with the menstrual cycle.
It IS EXACTLY what I have!!! And it does reoccur in my case around my period!!! WOW. Thanks resident Dr. I FINALLY know what I have. Damn!
Anyway…. before my surgeon came in the room. One of my sisters called her daughter who works in the very same building we are in. She's a radiologist's assistant. So when my surgeon came in the room. She was like - WHOA. who do we have here today? And I said they're my 2 sisters and she's my niece and she works here. LOL.
Anyway, I told her that my ultrasound indicates there is no change in size. And again whined about my Dr. And the MRI, PET scan not being explained with me. So she said I can explain it to you now if you want and I said - please…. And so she did.
And then I asked so what do you recommend that there is no change? She said to continue the chemo and hopefully the tumor will shrink eventually. I said I hope so that's the reason I chose the neoadjuvant route. She also said my next appointment that's when she will finalize how the surgery process will go.
She also asked me if you want to change care team I can refer you it's fine. But she kind of defended my current Dr. I mentioned about how on my last appointment that in my after visit summary she said we discussed I have GERD and I was like - we did not though….. She explained why and honestly for me it's BS. but nice to know she really like my DR. I don't though…. LOL.
So, she said she will refer me. Then said nice to meet my family then left the room. And we also left and since my appointment was really late there actually is no receptionist anymore and so I don't know where I can get her referral for my 2nd opinion. LOL. WTF.
Like whatever…. FML I guess.
Wow.
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pneuma,
Just call for the referral tomorrow . Don’t even stress over that!
Glad you found out about the boils. I actually have heard of hidradenitis suppurativa. Dr. Sandra Lee, a dermatologist who has or had a TV show on TLC, has highlighted a few cases. Take care.
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No update yesterday. Because I feel fine nothing significant happened. I also have been thinking if I should get the surgery now. I in fact will tell my quack doctor about my decision.
I also am deciding if I make an earlier appointment or just wait til the end of the month which is my scheduled appointment.
I mean if the chemo is not shrinking the tumor, which is the ONLY reason I chose chemo first, then why would I continue? The end goal is surgery anyway.
Might as well take this nasty disease out. I was hoping for only lumpectomy but I probably will have mastectomy or probably find a surgeon that can do lumpectomy. My current breast surgeon seems unwilling to do lumpectomy with my 3cm tumor.
I mean do I wait til my whole body is covered in boil? since that is my chemo side effect. I am not going to do that to myself.
Also herceptin and perjeta was supposed to suppress the hormone which was fueling my cancer. And if my boil was also supposedly triggered by hormone. Then these medicine is not working CLEARLY.
So why would I continue? I hope she agrees. I already decided to have surgery. It is scary. This going to be my first major one ever. But it has to be done.
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pneuma,
The word hormone is very broad. While your skin condition could be triggered by hormonal changes that doesn’t mean that chemo and hormone positive bc are a known cause of this condition. I did a search and can find nothing that associates chemo with your skin condition. It is entirely possible, and likely, that these are unrelated, but of course , anything is possible.
I continue to be baffled as to why you didn’t switch doctors long ago since you referred to her as a quack. That’s a pretty damning statement and am unclear as to why you would continue to see someone you would characterize that way. If I thought someone was a quack, I’d have switched long ago. It seems to me that most of your anxiety and lack of or misinformation comes from a poor relationship with your mo.Lastly, with respect to tumor shrinkage. Wouldn’t finishing the course of chemo, and checking for shrinkage at that time, be a reasonable course of action? Chemo is given in several sessions over time. If a certain number of sessions is the recommendation, why would you expect results after only partial treatment? If results were expected with only a limited number of treatments why would the recommendation be for more than that? i.e. If things were expected to be resolved after 2 treatments, why schedule 4? I may have the numbers wrong on how many treatments but why declare failure when you haven’t completed treatment?
Let me also say, that I am unsure about whether you actually want people to respond to you or whether you’d just like this to be a place to journal without feedback. Please let me know!
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Ugh. I am so aggravated. By my don't care team, by my shitty insurance, and probably most of all me - I overthink, over analyze.
I can handle most of my side effects now. But not this BOIL!!! They're multiplying. This is not even a side effect. I have this recurring boil for the longest time. That's why I was amazed by that resident doctor that he seem to diagnose this recurrent boil I have been having which is recurring around my period.
I obviously have non existent immune system by now and that's why this boil which goes away on its own is now running rampant.
I obviously won't do round 3. No freaking way. It does not seem to work. It's a great excuse to ditch this quack doctor.
Time to see that radiology oncologist my niece recommended. I just want this tumor remove ASAP.
I feel good. Nosebleed is over, well at least no more blood when I wipe my runny nose. I seem to have runny nose now. Especially when I am eating. I don't have a cold though.
Back to LBM no more watery diarrhea. The hydration infusion fix my nausea. It sucks coz I am getting the hang of chemo side effects. How to handle it.
My appetite is back. The taste though is still not 100% maybe 75%?
My ONLY problem now this BOIL!! I honestly am more concerned with this boil than my cancer. LOL. Coz my cancer don't even hurt. UGH.
Before my chemo let me count my boil - 2. That was by round 1. Before round 1 actually.
Round 2 - it became 8! Still counting. 2 new ones appear on each thigh. WOW.
FML.
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Ok…. deep breaths…. my quack Dr. called me today. I went to mychart today let her know about my multiplying boils. She said just like the resident Dr. that it is HS. That she is setting me up to see an infectious disease Dr. see if that Dr. can do something with the boils.
I also told her that the chemo treatment seem to not be working and she was like - how do you know?! I said it's not shrinking! She explains why. She still want me to continue… my husband still want me continue… the chemo - easy for them to say!
They're not the ones dealing with these boils! I have dealt with it yes but not this many! DAMN!
She also said unfortunately I may have to deal with these boils while in chemo… no shit. Because my immune system is low…. double no shit, quack Dr. UGH!!!
She said they can delay the round 3 up to a week, and I definitely will delay it! I want to see if whatever the infectious Dr. recommend will work first. When I told my husband I want to delay he does not seem to like it, Like…. thanks for the support. UGH.
I am just being difficult and stubborn. Hopefully my boil clears in a week. At least I know now how deal with my side effects, although the boil in my case is not a side effect. I have this already before chemo.
Lord, have mercy.
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My message to anyone reading my torturous journey. This is MY experience. It does not mean what happened to me may happen to you. The decision will ultimately be yours on what treatment you decide for your cancer journey. If I may be blunt. don't be like me! LOL. I am difficult and stubborn. I don't trust the big pharma nor doctors. but…… that's just me.
Anyway…… my breast surgeon finally put up her notes on my last visit. Nice to know 'we discussed' that she is planning to do partial mastectomy. We didn't though. LOL. But I am glad if that's what she wants to do. I am all for that. That's why I chose neoadjuvant chemo. Partial mastectomy is basically lumpectomy.
When I read what the procedure will be like it actually can be done outpatient. I really hope that will happen. I really hope the radiologist is right that by round 3/4 this freaking tumor will just melt. But….. I don't hope much anymore. Not with the ultrasound results and torturous chemo effects on my body so far. I will be amazed if I survive all this.
I now decided to continue the chemo. But I will delay it on Monday. I was supposed to do my chemo tomorrow but I just want my boil to be controlled first. Hopefully just like my chemo side effects I can learn to live with it and handle it.
But damn I really feel like I am agreeing for my quack Dr. To go ahead - torture me more! FML!!! I hate you cancer! what I hate most?!!! The treatments!!! Each and every cancer treatment is TORTURE!! It is inhuman!
That's what I feel. That's what I experience. Hope is fading.
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Welp. Total reset. I went from deciding to just have surgery now because I was disappointed with no significant change on my tumor. To… delaying my chemo. But my Dr. seems apprehensive to delay it. And since I feel better today anyway, and the recommended hot compress on my boils did its job. I agreed to do the chemo today.
I did say I did not take the steroids which I was supposed to take day before and today. And didn't wear the proper clothes for infusion. But they made it happen.
What they did was give me a steroid infusion instead today with my chemo and just gave me zofran pills. No tylenol or benadryl today coz I told my Dr. it knocks me out everytime. Even though she ask if I prefer to have benadryl and I said I prefer to be knocked out, LOL. Oh well.
So far so good. I also now decided to take that dreaded generic prilosec. AND my anti nausea meds.
I like my conversation with my Dr. today. I particularly liked that she checked my boils eventhough it's embarrassing because it's where the sun doesn't shine. But…. it has to be done.
I also told her that I called the infectious Dr. she recommended but they're not taking new patients. She said it's ok I talked to her on the phone. And I said what did she said? She said she recommended giving me antibiotics. That's why she take a look at my boils so she can decide if she will give me one.
But when she sees it and I told her it's getting better and the hot compress is working. She decided to not give me antibiotics. And this is the one that made me laugh - she said - well, you don't take anything I prescribe you anyway!! - LOOOOOOOOOOL.
Anyway, she also said she generally does not like prescribing antibiotics and when I ask why she said - she does not like that bacteria can be resistant in the long run.
I have decided to take her prescribe meds because I like her explanation about the side effects which is my biggest fear for not taking big pharma meds.
I also like that she scheduled me for 2 hydration infusion days. Which I like coz it help pop my boils and fix my nausea. Not so much about watery diarrhea and nose bleed. But those I know how to control.
It also seems like they shorten the gaps of my chemo days. Instead of 31 days. It's like 20 day gaps? Plus my hydration infusion in between.
My plan how to treat my boils. Since my husband said it's probably bed sores. WELP. Guilty as charged. I really am not active even before my diagnosis. I am a gamer so there.
Well, my solution is STILL video gaming but…. the wii sports!! LOL. At least I am not laying down on my bed while playing. And I still will do my exercise machine thing. AND… I will do my walking laps on a walking trail near my house.
I basically will be active. No more lazy days in bed. See if my boils will improve. OR not show.
As of now… Hope is taking a peek.
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My bad. I thought the chemo gap is 1 month. It's actually 3 weeks which is 21 days. So they didn't change the gap days.
I have not started my wii sports game yet. I was busy doing chores and laundry though so I definitely will start a more active gaming where I am up and active and moving instead of just laying around. I also will start my walking exercise outside tomorrow. I hope it's not raining like today. I definitely am doing more and longer of my exercise machine starting today.
So far no side effects. I guess that injectable steroid works. So fortunately still no anti nausea meds. But I definitely will start taking them if I ever have nausea.
There is a serious downside on the injectable steroid though. I was supposed to start taking the generic prilosec but my foamy urine made me postpone it. One of the side effects of the drugs is kidney damage. And frothy urine is apparently an indication of kidney damage.
The only reason I can think of why I suddenly have frothy urine is that injectable steroid I had with my chemo yesterday and I have an abnormal ketones value of 40 in my recent blood work. Fortunately my eGPRS is normal so is my creatinine.
Once I finish my steroid intake which is tonight. I will monitor my urine. Hopefully the frothy thing also stops.
So far so good. Still have boils but fortunately it actually is not painful just well nasty. But I have to continue doing hot compresses which again Thank God works.
I also am developing paronchyia which again is another infection. Wow. So far I have 3 infection on my fingers. 2 paronchyia and the other where a puncture from nowhere appears - that one was healed on its own.
My first paronchyia also healed on its own. The new one which was today I got caught in something and it bled and that's why I googled what I am having. Dr. google also recommended a treatment. Guess what it is….
that's right another hot salt water dip. And Thank God, it works!!!
I just noticed most of infections are treated with salt and water and mostly involves hot temp. Very curious. And they're effective too with no side effects. take that - greedy big pharma with deadly side effects!! UGH!!!
That's my raw and real experience for today. As long as my infection/side effects are being controlled. I am not panicking and hating the world.
LOL. But damn you cancer! And your torturous treatments with deadly side effects! Just D.AM.N.!!!
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Since I am a human lab rat. I just want to share what I observe treating the remaining paronychia. After I did the salt water soak. I noticed the cuticle came out and swelling subsided. So paronychia is basically ingrown cuticle? Interesting.
That's all.
Since my steroid intake is done for this round 3. I can feel the loss of appetite is about to start. Oh well. Hopefully frothy urine stops. I am monitoring it. To see if that liquid steroid inject with my chemo is really the reason. Since it was the only new medication I took in my round 3.
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Holy SHIT!! I am still alive?!!! HOW?!!! I knew… I knew round 3 will potentially kill me! Well, for some reason it didn't. But it's NOT looking good!!
I have a serious infection. My quack doctor won't give me antibiotics - scared to kill me, maybe? TOO LATE!! The chemo is slowly but surely damaging my internals. Funny, and ironic if chemo destroys my internals and made the cancer just spread!!! FUCK Science. If that is really going to happen. But….. it's looking like that will happen!! So fuck you science! Science killed me. If I die… from this. Chemo killed me. So is my DON'T care team. My husband probably will have a good wrongful death case. Who knows?
Yes, I am hating the world again. The infection is really not painful nor itchy. I think I have it under control but still like my quack doctor said I have bacteria infection. No shit!
Oh but at least they gave me a number to call…. on a WEEKEND!! And the office is CLOSED!! So after this rant. I will start making calls and hopefully…… the infectious doctor won't be another quack that will just make my infection worst. I hope not…. But then again…. I don't hope anymore.
Hopefully since I have it under control I won't do antibiotics maybe just an ointment or something… I just hate big pharma meds!!
This is why it's not good. Weekend I felt my left toe tingling. then the left feet. Then my left hand. Then day after - my right hand was tingling…. The hands tinglng comes and goes. But the left feet tingles entire weekend. PLUS….. I still have foamy urine. Yeah I know my kidney is probably damaged. Fuck you science! And dangerous, shitty, torturous CHEMO!! Fuck all y'all!!
I don't have symptoms of sepsis that I read though. I checked my BP and temp, no chills or whatever. I just know my kidney is damaged somehow. My quack doctor would be like - how do you know?!! Because you know and I know… it is!!!! Damn!!
My right eye is twitching sometimes too. UGH…….
My chemo journey is not for the faint of heart. I want my journey to be RAW… real as I am experiencing it. Sorry if I say bad words. I do tend to rant. It does help me release ALL my anger and frustration. So apologies if it's offensive.
I want to thank this forum because I have an outlet for ALL this anger and frustration I am feeling right now.
And yes I want EVERYONE to read it. The world needs to know… I guess… Of the REAL harsh effects of chemo!!! It doesn't help also if you get shitty doctors and hospitals and INSURANCE!!!. I want to expose EVERYTHING that is wrong with the healthcare system and greedy big pharma!!!
Well, that's all for now. Who knows what will be my mood next time..
IF
there is even a next time.
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On a positive note.. I finally got an appointment with infectious disease DR. Allelujah! Please dear God, let him solve this infection that has plagued me for so long.
And there really are angels among us. My angel of the day, Ms C. she's the referral specialist assigned to me and she went above and beyond for me today. Calling me to make sure the DR. is covered by my insurance. She said she also fax the referrals to the Dr. so everything will be ready and OK on my appointment.
She also said we are going to be best friends. LOL awwww. what a sweet lady. God bless you, Ms. C.
thanks for letting me take a peek of hope once again.
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Well, here you go my misadventures of my torturous chemo journey. I went to ER at 5am today. This is my mychart message to my quack Dr…. UGH:
I went because I have excessive thirst again started last night. They did a lot of blood work. Urine test. and IV infusion.I am scheduled for IV infusion tomorrow. Do I still need to go?I have blood trace in my urine again. And foamy urine. Not sure if I am safe to do round 4 This is ridiculous. PLUS my infection. Not happy.
So first when I went to urgent care. That's right it says urgent care. Same building as my don't care team and where I go for my infusion. SO the lady was reading what I am digitally signing for. The one that is blatantly highway robbery is when she said - we are billing like an ER. WOW. just wow. Ugh I just hate the healthcare system.
Then the Dr. coming in like he just woke up. LOL. And then when I showed him the last remaining paronychia on my finger. He proceeded to squeeze it. LIKE WTF…. damn. I took my finger away from him and I said I soak it with salt water…… What a careless idiot…..what did I say….. Shitty hospital.
Anyway, yeah. Gosh like I said. Still shocked I am still alive. My whole cancer journey is full of medical clowns.
I really will be amazed if I come out of this alive.
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So today, I felt good. Good enough to explore the outside that I have not ventured that much since my diagnosis. Oh not just go outside but do what my husband and I usually do during these sunny months - motorcycle riding - coz, why not? You only live once. or is it…. you only die once?
But of course it was cut short. Why do you ask? My eyes and nose were LITERALLY leaking water!!! So much so that when my husband saw me he was like - oh my. Yap.
It took awhile for it to stop. In fact my nose is STILL leaking while I am typing this. Hey at least my eyes stop doing it. UGH. But of course here comes Dr. google. Oh my…. I honestly would rather not say what I think the symptoms seem to point at. …because I LITERALLY can't handle another infection. When I am currently dealing with the one I have, And oh…. the boil was starting to get painful and yes of course I got scared. But fortunately when I woke up this morning, no pain. That's why I probably decided to be adventurous today to celebrate but well. it didn't end well. And oh…. there's a new boil. My God. Literally just why?
All I can really look forward to this week is my appointment with the infectious Dr. this Thursday. God willing - it will be the end of my current infection. And hopefully will solve the water leaks…..? One can only H.O.P.E.
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