Down the Rabbit Hole - Dodgy Daph's Medical Adventures pt 4

Going back home was great, you sleep in your own bed, you don't get woken up every 4 hours , apart from  when the kids are getting ready.   One has to play Elvis's blue Hawaii to kick off his morning (don't ask me where he gets his musical taste from k)  and the other one is listening to rap. (yeah well we know where she got her musical taste from!)   It's good to be alive!

Food and Kids... the game changer

I  try to get  back to the normal swing of things, go for my walks, have con calls for work, but all the while I'm waiting for the call that tells me when to go in to the Hematology Clinic. It's a worry at the pit of your stomach.    When I get the call it's like the calm before the storm.
The day arrives when I go in, Annie is driving me in and holding my hand.  My Doc is Dr Rich. Hes asking me what I know so far.  So I told him that I supposedly have a mass on my lung that was fairly large and that it was suspected Lymphoma.
He said " Yes you do have Lymphoma. "  I swallow.  "in fact the mass on your lung which is a very  aggressive form of tumor and rare is currently being viewed in Brisbane to determine weather it's lymphoblastic.  If it is we will have to begin with a very aggressive form of chemotherapy called HYPER CVAD.  Do you have any questions?
Yes at what stage is my Lymphoma.?  I ask nervously (c'mon we're all curious!) .
He says " it's stage 2, from the CT scans and PET scans it's just localised to the lymph nodes around the lung area only.  Phew that is at least good.  then he says," however I do want to do a bone marrow biopsy."
 I asked him"why?'
 he said "for the possibility that it might have spread to the bones or more for prevention purposes."  I asked him "why now as the other times they said they wouldn't do it because of the fluid in my lungs.. "
 He said "we'll be really careful and give you loads of local anesthetic to lessen the pain".
 For some reason I'm totally against it.  I mean OK we're talking about chemo , we're waiting to see the classification of the tumor and now this?"When do you want this by?"
 He says" I can get you on Thursday.  By then we'll also have the results from Brisbane. "
"Can I think about it,?
 He says "yes, I am not forcing you to do this, I don't want you in any pain , think about it and call me later to let me know if you're ok with it", and writes is number down for me to call by the afternoon".
Annie and I go for a coffee, she asks me why I don't want to do it,
I said " I just feel that it's really not necessary at this moment in time, it's not going to make any difference to the treatment they're giving me".
 Annie says "ok my friend it's you're choice and I'll back you but if I were you I'd do it and that's all I want to say."" 
I called the doctor and told him that I just didn't want to do it, so he said "ok, come in on Thursday for blood tests and results."
 I go in to the clinic on Thursday and yes it is confirmed that I have stage 2 non Hodgkin's lymphoma tcell lymphoblastic tumour.  Dr Rich wants me in on Friday for final check up and bloods and I'm in hospital next week.  I asked if I could wait to go to hospital, it 's all so fast.  He said "no Daphne, we need to get in there and get rid of this mass , you're not going to be able to travel and will have to stay put for a while". So in a flurry he starts to write down letters to all parties on my behalf.  So competent, and pushy but I understand why he's so adamant.

waiting for my blood tests

I go home and I'm in tears, I'm ranting, I don't want to do chemo, who the hell does?  It's like dropping a napalm bomb on your system.  It compromises your immune system and then there are all the side effects like hair loss, weight loss, muscle mass loss, and a whole host more one finds out after going through it.   I get several calls from those closest to me, with words of support and encouragement.  Bottom line is they all think I should just bite the bullet and do the chemo, "just look at it this way Daph, get it over and done with, it's 5 months of your life , then get on with your life and live it your way".  says Kymmie . 
Yeah this is it and I can't mess around, I want to be around for my Kids Graduation from university, may be kiss a grand child or two, finish my bucket list of travel destinations and get one more show off the ground.  Suck it up Daph, you can do this, after all you've been through more in your life, including watching your husband die in your arms, so get the warrior goddess in you to the fore and tame the beast.
 I see my doctor again we talk about the protocol I will be going through, the side effects, how many cycles and tolerance levels.
I look at Dr Rich and say, "but Doc, how am to pay for all of this?  My Insurance from AIG have refused to honour the payment, I don't have medicare , and I can't work now "  He says' look we've been in touch with Admin and we know what's going on but the most important thing here is we get you treated first, with regards to the hospital bills, we'll sort it out later and also get your social worker to start working on how we can sort that out ok, don't worry about that "  I'm shocked,  most of the hospitals I've been to don't even look at you unless you present your insurance card and your credit card. Here it is treatment first.

My Picc Line with 3 lines

So I begin my Chemo that Monday, the first thing they do is sit me down and brief me on what the protocol will entail, as well as leaflets and support groups that I can reach out to. (yes I behaved and didn't do anything silly)   Then I'm taken into the room to have my picc line put in,  it's easier for them to get a line in through one of your main veins in your arms as opposed to poking it with a needle, less damage done and it goes straight to your main ventricle in the heart that pumps out the most blood. I won't tell you about the pain, but this is the beginning of a lot of localised anaesthetic and long needles.

Calculating the ration of chemo and drip timing

Next I'm sent to the chemo chairs for the nurses to begin prepping me for my first chemo treatment.  I will be in hospital for a week as they need to keep an eye on me on how my kidneys are handling the chemo and to ensure that my pH levels are stable as well as my vitals.The nurses make it an easier stay,

oookk so this is what chemo feels like....

I have to have a lumbar puncture on my second day, no fun but it has to be done as they also inject a minute amount via your spinal tap to go past the blood brain barrier to get to the brain so it's more of a preventative dose . My two brain cells are loving the attention, lets see who makes the most of this.. ha ha.
My week of bad hospital food, lumbar punctures, chemo treatments, urine tests, 4 hourly monitoring, white blood cell shots are over, I get to go home and my brother surprises me with a visit from Malaysia!  Thank goodness for family.

I'm packed and ready to go home after a week in hospital!

So one treatment down and I'm back home, what is in store when I get back?  a friend who is working actively to promote her hair auction to raise money for me https://www.gofundme.com/down-the-rabbit-hole-with-daphne and what it really feels like to be a cancer patient.  I'll be back