Yesterday, I was supposed to have a chemotherapy treatment that was postponed due to low blood counts. While some of my red blood counts came up, unfortunately all of my white counts were lower than the previous week. I was told that my body can't handle the dense dosage. Perhaps this will mean that I will only have two more chemotherapy sessions - instead of 6.
The early morning rush that I've come to accept as my weekly chemo morning routine is part of the unpleasantness that goes along with the whole cancer/chemo thing. It's part of the process and you have to make the best of it. I'm okay with rolling with the punches and keeping a shiny happy attitude about it. As of yesterday, I'm completely aggravated and provoked. What's getting me unhinged at the moment isn't even directly related to cancer or chemotherapy. I missed two consecutive treatments without any follow-up in-between. Now I'm in a supposedly dangerous situation that I can't even deal with because there's an unfortunate disconnect between the hospital that provides and decides my care and the health care system that pays for it. While the financial coverage has been excellent and covers my expenses for drugs and chemotherapy 100%, I'm being forced to invest my entire day in chasing down approval for a shot of Neupogen which I supposedly need in order to restore my currently non-existent immune system. In doing so, I've spent needlessly risky time standing on lines in germ-infested clinics and pharmacies full of coughing, sneezing, and spluttering men, women, and children.
During this I've encountered a long list of people trying to help and genuinely working to get the approval and yet 4 hours later... clinics and pharmacies are now closed and I still don't have the approval or the shot. I cannot believe that a patient undergoing chemotherapy with nearly nonexistent resistance to germs is expected to run around like this!
Right now, I question and doubt everything about my treatment and I'm sure that's not a good thing to be doing at this stage and especially not after missing two sessions of chemotherapy in a row. I feel like my shiny, happy persona and image of strength is partially responsible. Sometimes being "strong" gets you un-worried about and overlooked... apparently. Perhaps being bedridden and dying of pneumonia, contracted from my severe neutropenia would get me urgent care and recognition? Only time will tell.
UPDATE: as of 14:30 I have the approval
UPDATE 17:30: Thank u to each and every person who took the time to read, for caring, and taking the time to write. I'm keeping things real. My blog is a very therapeutic outlet for me and I share raw emotions on it. Thank G-d everything has worked out. I never waver in my belief that everything that happens in life is l'tova (for the good). Having said that, I'm a survivor and not a victim. When something happens to me, I'm not a bystander and I take charge. Baruch Hashem this way of life keeps me extremely happy and upbeat and when I'm down... It leads me back to the path of happiness every single time!
Oy, Erika, the last thing you need to be worried about. May H' help you solve this problem, too. Still dovening for your refuah shleima.
ReplyDeleteRachel H
Thank you Rachel! Thank u for your love and prayers!
DeleteStella and I both have the shiny, happy persona and image of strength. In my case, often it is pure bullshit. But we do what we must.
ReplyDeleteSomehow smiling thru all the BS feels perfectly reasonable... until there's incompetence & negligence. Now I'm just plain POed.
DeleteErika, I'm so sorry you have to deal with this(and go through all of this). Although the world has changed a million times for you since high school, I see the same beautiful smile and genuine kindness glowing from you. You are very strong and I pray that Hashem brings you to complete health quickly! Regarding your problem stated in this blog; when you need something from a person or an office, just cry or start telling them what you're going through(without the strong appearance). It usually works(either because they feel bad for you or they just want to get rid of you ;)). Either way, it sucks that you have to deal with this! I hope tomorrow is a better day!
ReplyDeletelove,
Mimi
Thank u so much Mimi for taking the time to write! Your words are very meaningful
Deleteto me.
Love,
Erika
My husband would read this and say something about klipot. I just see a Kafka-esque surrealism...
ReplyDeleteYashar ko'ach on persisting and persisting, and getting the hafnayah. May this be one more step on the path to getting the care - emotional and medical - that your body needs for a refuah shelemah. Therapeutic hugs flying your way!
I am glad this one worked out and hope you are feeling a bit stronger. If it hasn't occurred to you already, you may want to get some of those disposable masks people wear when exposed to unhealthy chemicals when you are in crowded places. My father in law wore them when he was going through chemo and I think it was really smart. Thinking of you.
ReplyDeleteErika, YOU should not be doing the running around. I know you have a nice network of friends in Beit Shemesh who would probably be happy to help (I would be happy to help! I live 45 min's away, though - so I can't regularly drive there, but if it's something like this hafnaya or pharmacy nonsense here n' there, I can do it as long as I can work it with the kid-schedule). Is this something that you have to show your face for or can someone else do it for you? The phone stuff is mostly waiting on hold and giving you info too, right? I could do the waiting if you give me the info.
ReplyDeleteBasically, I'm sure we would all like to help, but you have to let people KNOW what you need before it's a headache for you.
That was outRAgeous that this happened. The strong front works well for you (liked your post about "fake it til you make it"!) and no idiotic bureaucracy should EVER insist you drop it and crumble before they do their jobs. No crying (unless you feel like it). Not for THEM. It's not a weakening of your strong personna to get upset over this -- you'd be outraged if you heard about it happening to somebody else, so why not for yourself? It's inexcusable on their part.
I'm glad you got what you needed. Next time feel free to call me for whatever I can do to help. If I can do it, bli neder, I will.
Leah