So, I had prayed for God to intercede and soften Dr Dai so I wouldn't have to argue my case yesterday so hard... I am just tired of it all. And He did ...So, she actually listened and HEARD me... I told her my pain was not controlled and I needed to do something about it...so she gave me two options: switch from every four hour oxycontin to a long acting version that lasts 12 hours...then she would also give me oxy in a 4 hour dosage to cover breakthrough pain. My concern with that was that the oxy hasn't worked from day one. So, I asked can't you just give me Dilauded it helps when they give it in the ER...and she agreed right away, problem is dilauded only comes in 4 hour pills...so I have to take it round the clock every four hours for any relief even through the night...so far it seems to be working better but my horrible leg pain usually sets in around tomorrow so that will be the test. I will try this for a week and if it doesn't work then I will go the other option I mentioned above.
The Gi meds that I have now thanks to the ER doc seemed to help...I took the GI cocktail before chemo , and while at chemo I took two oxys...The nurse also switched and gave me Ativan right before the chemo infusion instead of an hour before in the hopes it would help with the nausea. Then I finally got the donatel and took it when I got home. So for the first time in weeks I did not throw up or dry heave during chemo or on the way home... I dry heaved a little last night and I still am extremely nauseous, and have heartburn, But it is improved a little...and so far is tolerable. I was very breathless and exhausted and once again crawled up the steps when we got home and that is a little slower every week.
I was however up all night again so thirsty and very dizzy and feeling like I was gonna faint so every time I had to get up to go to the bathroom from drinking so much Steve had to get up with me because I felt like I was gonna pass out...so he got some sleep I got 0 sleep.
So the decision I need help with... Dr Dai told me that she is afraid that if I keep this up at the rate I have been that the side effects I have facial twitching...some neuropathy nerve pain in hands, joint pain, and stomach issues may be permanent...and I could live a life of pain and medicine.She said no one makes it through without a break and those people don't have all of the conditions I do even before cancer... She thinks I am being too hard on myself...She said I am 2/3 of the way through treatment and most quit by now... And this time I heard her and listened ...I was thinking only the neuropathy would be permanent and I don't have that too much yet.
So that being said she wants me to take a one week break from treatment to give my body a rest...and she wants me to consider lowering the dosage on my final four chemo infusions by 25% per infusion...so essentially it would be in the end like receiving the medicine amount in 11 taxol treatments instead of 12. I know from research that my best chance of non recurrence and surviving a 5 years is to have full dose 12 treatment of taxol in a row and the 4 full doses A/c treatments which I already completed...
I have gone over this a million times in my head, talked it over with Steve and My Mom and still cannot decide and I trust you all to have my best interest and would appreciate any input.
I want to LIVE cancer free...but this is not living in all this pain but I have no way to see into the future and see if this pain will continue after the chemo leaves my body.... I want to play with my kids and walk well and not be in constant pain like I am now and constantly taking meds and unable to drive... However I want to LIVE most of all...
So, do I take the week off? Which to me means nothing, as the meds are masking the symptoms anyways...and I don't see where a one week break will make any difference in the grand scheme...only in my mind cause I want to keep going and get this over with...since they say chemo can take years to leave your body completely.
And most importantly do I let her lower the dosage and pray the cancer doesn't come back because of the lessened dose...on top of the fact I have gained 20 pounds since I started chemo, which never occurred to me till today so I didn't ask her if she ever upped my dosage with the weight gain...if she didn't then I am not receiving the suggested dosage per cubic inch as it is...And pray the side effects go away and I am left with quality of life.
What would you do if you were in my shoes? I can say in the past I have had trouble with meds after awhile of being on them it was joint aches that made me stop them that's where the meds hit me...after stopping them the pain would go away . But that was regular meds not chemo...
I put all of this in Gods hands but now I have to make these BIG decisions...and I do not know the right answer... Help???? Please...
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