Stem cell harvest successful

Not the most pleasant procedure I have had to go through twice in 24hrs - particularly since my veins are more scarce than hens teeth. And the needles are not the smallest I've seen! But apparently it was successful and that's a relief!

ENT guys were in early this morning with their scope and don't appear to be budging on the '6 more nights' thing.

Immunologist registrar also visited and it looks like they are going to test my allergy to etoposide by starting low and going slow - with emergency kit standing by!

My roommates remain the same, which is a relief, I can hopefully expect the same sleep as last night.

No room with a view

How quickly it can all disappear! Monday afternoon I found myself in ward D - strictlly no flowers and no kids allowed! In a room with 3 older gentlemen. I got a decent nights sleep last night so it wasn't as bad as I was expecting.

When the day finally started moving I was off to have a ct scan, and then seconds later, no, I was off to do the stem cell harvest.

Because it was so late in the day, I only got two cycles in, and will be on the machine most of today. At that stage I had 4 canulas in me! All for different reasons ,,,, too boring to go into. Needless to say my poor arms/veins are getting a little fed up.

From the stem cell harvest, off to have a ct scan of my sinuses, where I made it very clear to the nice young nurse that if he f*cked up my canula, there be hell to pay!

From there off to the ENT dept with two nice young drs, who proceeded to sit me in their little cluttered office, and shove a scope up my nostrils. Yep, yep, all pretty good, then come over here and I leaned over their hand washing basin and was shown how to flush my nostrils with 500mls of saline solution. There's a technique that I hope I can replicate, so I don't drown myself or end up drinking most of it through a nostril (yuck).

So, I do have sinuses issues but won't need operation at this point - however I will need to stay in hospital another 7 days to be given iv antibiotics and have a scope shoved up my nose daily.

I'm not sure if Dr Will concures, therefore i'll focus on remaining calm for the harvest this morning. Stay tuned!

Room with a view

It's monday morning, and I've been a guest at the RNS Hilton since thursday night. Floor 12, ward B, room 5. The harbour bridge and city looks sensational from here, and yesterday's sunrise was glorious!

About 8.30pm thursday, after feeling like death-warmed-up all week, my temperature finally peaked at 38 degrees, flagging the 'go straight to emergency, do not stop' card.

I must say, being 'neutropenic' has a substantial amount of power in an ED. Because I have NO immune system, they process you immediately and get you to a room of your own. Top-shelf antibiotics follow, and then you are pretty much left alone.

Why RNS? Because I need to be here for the harvest on Tuesday 30th. The experience here has been interesting!

Firstly, I am impressed with the amazing variety of tasty road-kill I have had to eat! I think the kitchen staff here would give any iron chef a run for their money on originality!

Secondly, you do much better here if you can 'do it yourself'. Eg the bed has a crank-handle at the front for putting the back rest up and down, just like an old model T ford.

Attention to detail is an asset, particularly for the patient. It was saturday, when I pointed out that I didn't have any patient wrist-bands. I was only worried about it cause I needed my patient number to get the pay-TV organised. Drugs kept turning up that I didn't need and lastly, I was getting a blood transfusion that I knew nothing about. By sunday I had all the staff organised!

My veins have gone underground, so when its time for needles, I've developed the die-hard fortitude of a junkie and got the pin-cushion, black & blue arms to match.

Dr Will visited on Friday afternoon with the following update:

ENT (ear, nose, throat) surgeon will investigate my sinus issue, because I am going to be a great deal sicker in the near future and the infection in my sinuses needs to be resolved before D-Day on the 15/12

Immunologist will investigate my allergy to etoposide. This drug is a key drug to the usual 2 chemo cocktails for stem cell transplant, apparently my remaining alternative will make me many times sicker, so etoposide would be prefered if we can include it safely.

Dr Will has reviewed my biopsy history, and is of the opinion that the lymphoma is slightly different from its original diagnosis, suggesting the core is indolent (slow growing), and therefore harder to treat, evidenced by results so far ie lack of remission.

Plan A is to have my own stem cell transplant. If this doesn't work, he has recommended that we have a back-up plan which is to do the whole thing again and use someone elses stem cells - from a full blood sibling. BK and GK have said they will do a blood test regarding their compatibility to me.

Why can't we just cut it out you ask? Non-hodgkin's lymphoma is a cancer of the white blood cells, its therefore in the blood and removing a lump does not get rid of the disease.

That all said, hospital can be a drag, so a thanks to GT, Sam, Jay and Mel for visiting me and bringing me 'survival treats' and being such great distractions. Thanks to everyone who called and checked in on me!

Very special thanks to the Jack and Vicki for looking after the girls on Thursday night and Friday while GT and I were at the hospital, to Uncle Giles for running the girls up and down the F3 for us and to the Bock family who adopted my girls for the weekend. Particularly to KB and TB who worked tirelessly from 6am to 730pm keeping my babies entertained, fed, watered, toileted and bribed with treats! Great job girls, I love you heaps! Can't wait to see the Santa photo!

In memory of beautiful Shrubby, who passed away suddenly last week. You will be forever in our hearts, and I know you're with us.

To my darling GT, I love you and I'm so proud of you.  Through shock and grief you were amazingly strong on Saturday to stand up and speak about Shrubby, your best mate, and all the wonderful times you've had together in the past nearly 37 years. Not many people can say they have known someone all their lives, and seen each other or at the very least talked by phone every week! You guys had a special friendship and I'm sorry I couldn't be there in person for you! But you did it, and Shrubby would have loved it.

And to the Shrubbs. Thank you for the lovely native flowers you sent with Glenn to the hospital. Forever thoughtful in your time of massive loss! Thanks for looking after Glenn, you will always be like a second family to us and I look forward to giving you all a big hug when I get out of this bloody hospital!

The Week

If there was ever a week when I can say we have been 'existing' on our knees - this would be the week!

We've had devastating news - the passing of glenn's best friend suddenly has had us realing with shock and grief.

And to make things seem that much worse, jessica has been sick with tonsilitis and I have been struggling along the bottom of existence with headaches and feeling really lethargic.

I'm in hospital again, jessica is better (thankfully), and we still have a funeral to get thru.

I haven't had a lot of extra energy this week to return calls, sms's or even just answer the phone - but wanted to say thanks for thinking of us.

I'm praying things get better from here.

First Neupogen needle in the tummy, and the next section of journey has begun

Didn't hurt a bit!

Thanks to Deb and James for visiting last night and spending some quality (and distracting) time with GT and I, the girls loved their lip-smackers and are driving us mad with lip-gloss going everywhere this morning!

Mummy's not home for Christmas, but Santa will visit early! (special circumstances)

Santa has been in touch and has promised to make a special "Christmas delivery" trip to our house before I go into hospital so mummy and the entire family can get their presents altogether!

So its full steam ahead to get the chrissy tree and decorations up. 

Pressies are pretty much done!  Phew!

And I'm still able to see the girls Christmas pagents on Friday 10th December, and Jessica's ballet concert on December 12th.  Santa comes that night and so the Thomo Christmas day will be Monday 13th December, before mummy goes to hospital on the 15th.

I'm feeling very happy about how this has all fallen into place!

Transplant update from RNS meeting

Mobilisation starts tomorrow - DIY needles twice a day of GCSF (Granulocyte Colony Stimulating Factor)!

Harvest on November 30th - fingers crossed that there are enough stem cells to harvest! We need to get enough to do the transplant, if not, there may be another drug to try (plerixafor) or they may be harvested from bone marrow - thankfully there is about 90% chance the GCSF needles will work.

The dates below may change somewhat as the allergic reaction I had to Etoposide has thrown a bit of a spanner in the works, as this particular drug is used in a number of the current first-line transplant chemo-cocktails.  Dr Stephenson will be fossicking thru the literature to find another alternative combo for my transplant because my circumstances are quite rare.  Thankfully, I have my trusty German team at hand, and I'm hoping I will have some suggestions from them to compare.  I am keen to be on the front foot with this, and all expertise will be leveraged!

Transplant admission will be 15th December

• Pre-transplant is referred to as "day -6" begins with chemo for 6 days, loose my hair again!
• Transplant is referred to as "day 0" when I receive the stem cells
• Post-transplant is referred to as "day+1, +2 etc" I can expect to be in hospital +10 to 15 days, give or take depending how I scrub up after that ordeal!

In short, that will have me admitted 15th December and home around the 5th January!

Expect about 6 weeks to recover, then radiotherapy will begin - and I can expect up to 6 weeks of that!

Treatment completion approximately end March 2011.  (All going well, here's fingers crossed and much praying that I am in remission by this time.)

Just an hour to go!

Its amazing just how your spirits lift when you realise you are at the end of another chemo session, just an hour to go! Yipee!

I got up early this morning and baked my infamous banana bread and brought it in for the ladies with a thank you card! Both went down a treat!

I've been spending time here at the juice-bar since late May, and have benefited from their expertise, caring and TLC over this time
- from the big kahuna Dr H,
- to the ladies at both receptions - particularly Janice and Steph,
- to Deb and her lovely worldly and wonderful tribe of nurses - particularly Maid Marion and Kiwi Kirsten, and in the early days Jessica and Phillipa,
- to the pharmacy ladies - particularly Marion
- to the wonderful voluenteer ladies who make the best cuppa's, toasties and cup of soups -

THANK YOU ALL

The people here become like and extended family.

Even when I turn up unannounced - not feeling well and always teary, I get cared for, hugged, given great advice and medical treatment and sent on my way feeling much better!

42 mins to go ,,,,, then NO more chemo for this session!

How happy am I!

Weekend 13 & 14th November

Sorry for the out of order - but couldn't go unmentioned ....

13th November - last Saturday night I spent with some lovely ladies from my mothers group for a belated 40th Birthday party japanese style at Hornsby. Thanks ladies for a great night and for all the lovely pressies! You've been great through this ordeal and I truely appreciate having such supportive and caring people around me.  Thanks to Tori for her brief appearence - it was great to see you!

Megan and Lisa

 

Yve and Dee

Rochelle and Sheridan

 

Sheridan and Michele

Check out the new fro' - distinguished "salt and pepper"! 

The second session hasn't caused it to fall out again - however, more chemo to go.

So in the meantime - I'll have a little play with really short hair styles and colours - stay tuned!



Sunday we celebrated my sister Bab's birthday with a delicious brunch that my mum served at Ourimbah, then off to cousin Imi's dance concert at the Central Coast Grammer School - we also got to see Tamara and Kirsten strut their stuff as well.  And wasn't the weather tops! Hot, babe, Hot!

Day one of last set of R-DHAC 21 chemo

A long day - in at 9 out at 5.  Uneventful - just the way I like it!  Check out the new fro' - my hair is growing back in a very distinguished "salt and pepper".  Not that my personality has changed to match!

What is stem cell transplant?

A lot of people are wondering what stem cell transplant is?

There are 3 parts:

Mobilisation
After this last two days of chemo, I start giving myself twice daily injections to help the stem cells grow. Stem cells are made by bone marrow and are the cells that eventually become white blood cells, red blood cells and platelets.

Clinical evidence has shown that stem cells peak in the blood in about 12 days which leads to the harvest.

Harvest
On 1st december, I will go to RNS to spend the day with edward cullen's friend (the vampire machine) that basically takes blood from one arm, pumps it thru the vampire machine to collect the stem cells, and then back in the other arm. Stem cells then get frozen and I go home.

Transplant
Some time in December I'll go back into RNS and get admitted for about 3 weeks. In the first 8 or so days, I get very high doses of chemotherapy then my bone marrow is 'rescued' from the adverse effects of the chemo by reinfusion of my own bone marrow stem cells.

Hopefully all goes well, and I go home soon after.

Just to add a bit of drama to the whole thing - there is a 3% mortality risk with stem cell transplant, and a higher risk that I could end up in ICU for a while.  I'm not worried about either. On enquiry, apparently 2010 has hit its mortality quota and hey ICU is unplesant - but survivable (just).

Update post appointmment with Dr Harris

The PET scan shows that there is still cancer lesion there and that is has shrunk a little, but not as much as she had hoped although she's positive that we'll get it in the end.

The bad news is no remission for me just yet. The good news however is the plan remains the same with one small change at the end.

Finish chemo Wed/Thurs this week
Mobilise stem cells for collection 1st December at RNS
Do stem cell transplant BEFORE radiotherapy, so I can look forward to Christmas time in hopsital! (originally it was radiotherapy in Dec 2010 then stem cell transplant Jan/Feb 2011)

Apparently radiotherapy can create scar tissue which could make it difficult for chemo to get all the cancer cells, therefore Stem Cell Dr (Dr Will) suggested doing the transplant (which includes high dose chemo) prior to the radiotherapy, to maximise the chemo potential on the remaining active cells.

That's about it! And in Dr Harris's words "onward and upward".

Juice Bar for me tomorrow!

Sneak peak

We couldn't wait, GT and I had a sneak peak at the PET scan - thanks to Sheridan for lending us her computer as ours has blown up.

Unfortunately there is still appears to be a lesion there, and looks to have shrunk about 20-30% from the last PET scan in September.

I'm no Doctor, so we have decided to go to the pub for lunch and try not to think about "what it all means" until we talk to Dr Harris at 1.40pm. 

Stay tuned.

one more sleep

One more sleep then I'm off to RPA for a PET scan to see where the lesion is at.  Here's hoping it's all gone.

Seeing Dr H on Tuesday, so will have update Tuesday afternoon.

Lunch trifecta complete

Thanks to Maddie, Kirsty and Deb for catching up with me for lunch this week. While i'm still having a few minor health drama's, i'm feeling almost normal this week and much better than I have since the beginning of october!

Make hay while the sun shines I say, next week turns to poo again!

Monday PET scan
Tuesday 1.40pm appointment with Dr H
Wednesday - juice bar part 1
Thursday - juice bar part 2
Friday appointment at RNS re stem cell harvest

Monday is D day re whether I'm in remission or not. Fingers-crossed!

On the up

Monday about 5pm started to feel very achy which didn't abate ,,,, so off to the Day Clinic for blood test and heaps of TLC.

A headache (probably sinuses) was starting to kick in and I was getting alittle worried!

Saw Dr H that morning - white blood cells at 1.5 (which is not far from Zero, but not Zero)

So, more drugs - antibiotics and off home to see how I went.

Thankfully today, I'm feeling mostly back to my old self! I think I just diverted the course of a train-wreck! Give yourself a head-wobble michele!