My Chemotherapy Journey
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pneuma,
I agree that navigating cancer treatments and dealing with insurance can be overwhelming. I don’t know if any insurer who will not let you switch doctors. I belong to a self contained HMO (Kaiser Permanente) so switching docs was simply a matter of making a phone call. It did not matter where I was in the course of tx . A new doctor will be able to access your medical records, with your consent, and be able to follow along with your treatment plan. Please contact your HMO right away!
I can’t say enough how much better your experiences may be if you find a doctor who you are comfortable with and who respects and cares for you. It makes a tough experience so, so much easier! As for your husband, let me be very frank. You are the patient and your needs come first. Please let him know that you should be putting up with docs who you don’t feel comfortable with and as the patient, what you need and want should come first. You can hear him out, but he is not the patient! I really wish I had better words to help you understand what an huge difference it can make when you are comfortable with your care team.
Costs vary widely in the US due to our terrible health care system. I am over 65 and have a good Medicare plan so although care is a bit more expensive, I have been able to manage. Please check with your insurer or care providers to see if you qualify for any additional assistance.
Keep trying to fully educate yourself about bc and its treatments. Make decisions based on facts and reality. Work on not panicking over everything . You have had a much harder time than most and it seems driven by lack of confidence in your docs and your tendency to panic over virtually every aspect of your tx. I know you are overwhelmed right now but have you considered seeing a therapist ? Many of us have used therapy, and sometimes meds, to cope with our diagnosis and treatment. It really can make a difference. Take care , take deep breaths, and eat that elephant one bite at a time!
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I came here to update and what an update it is. But I can't login for some reason. I am pretty sure I got my password right. So not sure why there's a problem. I forgot what email I use to register so I just made a new account. Anyway my next update is not for the faint of heart. I believe it was Maggie(?) who said I am braver than I think. And from what I have been through last week and will go through with these freaking cancer treatments. I can say say that yeah. I am stunned that I went through all of this pain and suffering without giving up. I can't believe it myself. I am amazed I am still alive like WHY? why though?
It's me, pneuma. Well I am Mythra now. LOL.
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So, I felt pain right at the center below my breast. I told my husband I want to go urgent care. The Dr. did an area exam on my stomach asking if I feel pain. When he went near the area of my pain, he said I have epigastric pain. Sent me to CT scan.
I vomited everything I ate immediately after the CT scan. It's coz of the dye they injected me, I suppose.
Well, hours of waiting on results then a different Dr. went into my room and just discharge me. Saying everything is normal. So I went home STILL with pain.
The next day, I told my husband I want to go to ER. Lots of waiting in pain, they wanted me to do an ultrasound, they said it's probably my gallbladder causing me pain.
A Dr. entered my room said she will perform gallbladder removal surgery. Told me not to eat or drink ANYTHING. They hook me with IV, then someone said they got me a room. I did not eat or drink ANYTHING for 2 days!! OK? Ya, and when I finally get to surgery it's a different surgeon that did my gallbladder removal.
Surgery done, went back to my room. I want to wash my mouth and I was spitting blood clots! I was spitting blood. Told my nurse, she said they probably injured me doing intubation. Oh shit great!!!
The next day, I stood up to pee, I feel faint. I told my nurse, they sent me to CT scan again. Warned them that I might vomit coz I did on my last one. They gave me a puke bag. Well damn, I did not vomit.
Next thing I knew they are wheeling me out of my room for another surgery because why?!!! I have internal bleeding!!!!!!! It was an IR surgery just like when they put my chemo port. So yes I am FULLY AWAKE the entire time! They were draining my internal bleeding!
After that, went back to my room, I have to have another blood transfusion, this time - 2 bags!!!!
The Drs. that check on me said - wow you've been through a lot huh? Ya no shit!
Don't even get me started with all the nurses I have and their ineptitudes. I honestly like I ALWAYS said can't believe I am STILL alive, I literally feel like I crawled back up from hell that i have been through.
It does not help I still feel pain in my liver, especially when I cough. My God. When will my pain and suffering stop?!! WHY? I just want to know why all hell literally break loose in my life right now that I feel like I can't even get a break?!
It's insane what happened to me last week. ME, who NEVER been to hospital my entire life before my cancer diagnosis!
UNREAL.
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Pneuma - I’m so sorry to hear you needed another surgery and had complications. Gallbladder pain is intense so I hope the surgery will bring you much needed relief.
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Thanks harley! Appreciate it. What I went through is beyond what I thought I can live through, I tell you that much.
I guess survival instinct is real.
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OK this is word for word, what I sent my onco in the middle of the night last night. I was in self pity emo mode. Pretty sure I was crying when I type it:
Hi. Dr. I would like to cancel my infusion appointment. I mean I can have my port flushed that day since it needs to be flushed but I am not comfortable doing infusion yet after my surgery.I still feel some pain in my liver. I actually had internal bleeding so I had to have an emergency surgery for that.I really feel like if I go through the infusion that it will split my liver in half.That's what I feel that is my decision. And I am willing to suffer the consequences I guess. I just feel like these cancer treatments just had me hospitalized twice now and this time I am listening to my gut.I will stop my infusion for now until I feel my liver is ready and fully healed.I am having trouble with insurance claims anyway. I changed my insurance this year and it looks like the billing department did not process it right.There's just way too much going on. I just want to be free of pain and suffering from my recent hospitalization. And be worry free for awhile. Too much for me. I will continue the anastrozole but that's it.My cancer treatments are too traumatizing lately. I need a rest from it for awhile.
The subject line - stopping kadcyla
I just checked mychart today and my Dr. did reply. And wow surprised surprised, she agreed with my decision, My other decision is to remove my chemo port. I just cant afford to pay $800 a pop to flush it every 28 days! I will just wait til my next ultrasound appointment which I will have in May with my breast surgeon. And my onco also did tell me to wait till what the ultrasound result sees in my breast if I will be needing the port or not.
I want to remove the port now but I literally have just been to surgery so…
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This might be my last post. I guess it depends on the moderators decision if I can continue to post with the new account.
I guess thanks for letting me share my horrendous chemo cancer journey. It helped me unload my angst, frustration, pain and suffering. Especially on my most BRUTAL cancer journey so far with my gallbladder removal that needed emergency surgery due to internal bleeding caused by the clip that snap. Well that's according to the surgeon that did that to me. Thanks, doc…. NOT!!
I only am posting now because after a BRUTAL 1 month of pain and suffering. I am finally back to normal. In fact the last of the stitch glue from my gall bladder surgery just came off today. It's the one on my belly button.
I feel good, and feels normal again. In fact, I just had my kadcyla infusion today. I had to postpone it for 5 weeks according to my onco.
So ya. Depending on the moderators, this might be my last post. Thanks for letting me unload my feelings here.
What a horrendous journey it was. Not yet done but… well. Like I said I might not be able to post anymore and it's ok.
I guess I ended my journey as of today. Feeling good and back to normal. Still in treatment. But I feel good. Ya, just want to share I can't believe I'm back to normal I swear I thought there's no going back from that agonizing pain and suffering I experienced. There's no way,
But thank God, I am well. As of today.
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Oh, wow, I guess I get to keep posting here. I was able to log in on my OG account what the hell. If the mods are reading this, I guess problem solved. That is so weird wow. As weird as my cancer journey. One day I am close to death with my pain and suffering and then BAM! my body recovered, I don't know how. and I am fine.
Oh well. Such is life, I guess. Can't believe I am still alive wow.
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