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

The "M" word

So much has been spinning through my mind lately, it was hard to focus on exactly which topic I wanted to write about this week.  I realised that sometimes you do have to share some personal aspects of your life because somewhere, someone is going through the same thing and could possibly benefit from knowing they're not alone in their experience.

Lets set the scenario shall we.  I get a text from my son Christopher in the UK and he says "hey mum, you wanna Skype on Sunday?'.  Nothing out of the ordinary there as we usually speak once a month on Skype, so when we did have face time I was surprised to see his girlfriend Irena next to him on the screen.  Even more surprising was the fact that he was just staring at me after the initial hello and was keeping silent.  My youngest son Ayden who was next to me said "dude, this is getting awkward man, say something" aaanndd he did, "Mum Irena and I have decided to get married, after all we've been with each other for 6 years now and feel the time is right " he must have said more but all I could hear was "I'm getting married".   Now my son is 26, which is not an unusual age to get married, after all I got married at 25... WHICH is why I freaked out all the way from Skype, to my room,  to calling my mother up in the UK, to crying on the phone to my best friend in Australia.

father and son

Why was I freaking out?  Firstly he'd just finished his degree in Uni, had hardly been working for more than 6 months at a job he didn't particularly like whilst waiting and applying for what he was qualified for, secondly he had no assets what so ever including savings and LASTLY as I quoted to him, my marriage to his father at such a young age was a total disaster and I didn't want the same for him.  The most worrying part was that he was going to quit his job, pack up his flat and come back to Malaysia (as Irena is Malaysian) because Irena wanted a "traditional" wedding and he thought he could work here for a few months whilst all the marriage preparations was going on and wanted my blessing, (cue me clutching my chest and doing a southern belle swoon, well more like a Hobbit needing CPR if you ask me)

Back to the Skype conversation, by this time I was incoherent with anger, sadness, frustration because everything I had been hoping for, for him to work towards was thrown out of the window in a blink of an eye in a spectacular manner.  I said I did not agree to the marriage, and would not give him my blessing.. the conversation stuttered to a halt, and eventually I excused myself whilst Ayden took over (ever the diplomat to smooth things over)

To try to write about what transpired in those two months would be akin to a Latina Telenovella script.  Once Irena flew back to Malaysia, he packed up his things, went to stay with my mother for a week, and though she tried to talk some sense into him he was determined to see it through. Meantime back in the land of no smiles and political unrest, my father had been diagnosed with non hodgkins lymphoma and was undergoing chemo, my youngest brother whom I had not seen for 20 years was coming back to KL to see him and Christopher flew into town without informing me, which really hurt.

My best bud Ron and my brother Zaki on the right

Seeing my younger brother after so long was like a ray of sunshine, we had grown up in our teens and twenties in Hong Kong and had been close.   He had eventually settled his family in Australia and has been working offshore all this time, I have missed him so.   I took him aside at the family get together to have a quiet word with him, and he in turn had one with me.  He said "do you remember what  you were like in your twenties? and when you wanted to marry Chris's dad and how mum was totally against it? did anyone or anything stop you? think about it.  It's his life, and if it's a mistake it's his mistake to make, give him your blessing and let it go"  I mulled it over for a bit, thinking back to when I was the same age and what I was going through and feeling at the time. I laughed out loud in realisation because my mother reacted the same way as I did when I told her I was getting married!

Yup I got married against my mother's wishes !

So I wrote my eldest son, whom I love so much and had gone through so much for to have in my life, a letter from my heart to tell him in the gentlest way my concerns, to reassure him of my love for him and to give him my blessing because at the end of the day, the most important thing was his happiness.  Isn't that what all mothers want for their children?

Today I'm helping him sort out his wedding trays (in Malaysia they are called "Dulang" it holds the gifts he will present to her at their wedding ceremony),  making the door gifts for the guests, listening and discussing with him possible job opportunities, attending the food tasting for the banquet and generally any information he needs to help make his marriage and time here (as he's reassured me he's not going to "live" here) as stress free and as smooth as possible.  We've got a month and a bit more to go before the big day.

at his 21st b'day when Chris started dating Irena

The most important thing we are put on this earth, is for and to love,  and it is with love I write this (but please god let my other two kids be 350 years old before they get married!!!)   Have a great week and thank you again for reading my blog.

the weekend

hey D, did you just get up?" my brother Bob enquires down the phone.
"Well sort of, I'm just watching Friends in bed" I croak back. I love watching Friends, over and over and over again. It puts me in a "happy" place. Just like watching Black Adder when I need to go to sleep, I know it so well, that the moment Rowan Atkinson says "Baldric!" I'm in the land of nod.. don't ask me why but it works!

I'm quite amazed at the amount of invites that are pouring in for this weekend, a hen's party, drinks at trendy bar, dinner for two , bbq at my bro's house (which is why he called)... I guess being in hibernation for the past few weeks has made everyone wonder what I look like now! heh heh. Ah well, the hen's party it is, as my best buddies are goin with me and I promised them first a week ago. Last time we had a hen's night the male stripper/dancer (yeah whateverrrr) kept dancing near me and sitting on my lap.... errr ok... cute but please go hassle the Miss who's about to be a MRS ... Wonder what the entertainment will be tonight.. the theme is Arabian nights.... uh huh... my thoughts exactly.. (look take the thought of 40 odd nebulous women in scantly clad see through clothes posing on cushions being fanned by eunuchs in a large tent like room with scalloped curtains and tassels.. being served Turkish delights and sugared almonds.. Out of your mind.) it's in a restaurant in town...

I'm most certainly not going to be going in some type of floaty number that's for sure! Wonder what the girls will be wearing..
Dx