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!

A couple of "good days" under my belt and feeling great really

Thankfully, the chemo shot last week has settled relatively well, and I'm not feeling like I have been half as knocked around as I did the previous session.  I am hoping this continues. 

Thanks to my lovely husband GT who has been ensuring I'm resting, eating well and taking all my meds (even the grumpy - I-wanna-fight-ya ones!) and the kids are all happy and under control.

Saturday is turning into a lovely summery day!

Stem cell orentation done

Well chemo was again uneventful and finished in time to get to noon appointment at RNS Hospital.

Met the very nice Dr Will Stevenson and his very organised assistant Cassandra, and we have a plan for 'mobilisation of stem cells for collection' on the 1st of December.  I get connected to the "vampire" for approximately 6 hours and hope like hell that I have generated enough stem cells for collection at that time, so I don't have to go back again for another session with the "vampire"!

However I have to continue to remind myself that all this hinges on the 15th NOVEMBER PET scan and what it shows, so much weight on this scan its unbelievable! 

While we have stem cell collection plans and expect to do some radiotherapy over christmas period - our personal lives are on hold, and its so frustrating! I am continually saying to myself "one day at a time, one day at a time!"  I have never been so short-sighted in all my life!

Second cycle done and home relaxing,,,

Day 1 of 2nd session is all done and was a very uneventful long day. (9 to 5pm).

If I look green, that's probably because I was feeling green,

the last session was fraught with severe allergic reactions and drama's. 

I was a bit anxious - thankfully they've got lorazepam for that! give me one of those.

Kids are in bed, feeling tired but well ,,,,

Tomorrow is an early start, chemo at 8am, as I have to be at Royal North Shore by 12 to meet Dr Stevenson, and have a stem cell transplantation orentation.

Day 2 of the second session and feeling less anxious - can't you tell!

Feeling much better

I'm at the end of the 21 day cycle, appointment with Dr H tomorrow to check bloods and catch up, before another two days chemo treatment - all day wednesday and most of thursday. It's amazing how quickly 21 days cycles come around!

Home again, home again gig-id-de-gig!

Goodbye to The SAN, thank you for making me feel human again, I'm very pleased to be heading home after 5 nights of loving care!

Still in hospital

It's monday, still not 100 percent but mending steadily.

Will see what dr h has to say tomorrow.

A long, hard week

After feeling below average all week, on Thursday my temp was bumping between 37.5-38.

To cut a very long story short, off to the SAN ER as per Dr's orders, bloods come back quickly - neutropenia and low platelets!

Neutropenia means neutrophils are low, neutrophils are a type of white blood cell that fights infection. On thursday mine were ZERO, mimimun should be 2

Platelets help your blood clot, and having low platelets increases the risk of bleeding and bruising. They came back at 23, minimum should be 150

The details are boring, lets just say I have never been so sick.

How to fix neutropenia - high dose antibiotics. These fight infections so the body's neutrophils can recover on their own.

How to fix low platelets - platelet transfusion of course! (it looks like liquid skin)

Its sunday and i'm feeling much better, neutrophils are at 2.2 and platelets are at 53.

Still in hospital, resting, will see what the big kahuna says tomorrow!

Day Three of the second beginning of the End!

Today was day 3 of the 1st of 3 chemo treatments.

Walked in not feeling that crash hot - and thanks to the lovely nurse-ladies who gave me cuddles and caring, my day turned around quickly and completely. 

I also got the "bridal suite" to have a nap in and that really made a difference.  Special thanks also to Nads for her visit and delicious honeycomb crumbles - and to Marion for encouraging me to have the sleep. 

How quickly time flies when you are totally out to it in la-la land!

Still feeling pretty good this evening all things considered, and the nausea remains a bay!

Day Two of the Second Beginning of the End!

Rumour has it that most of the Drs and nureses very rarely seen an allergic reaction to Etoposide, probably 1 in 5-10 years! So I was the talk of the "what happened yesterday" convo in tea room today!

Juice-Bar was much quiter today, no drama's with any of the drugs and was out of there by 3pm.

Its probably obvious, due to the fact that I have changed drug regimen, however I don't get the fluro-orange juice any more!  Could still loose my hair, but was suggested that "thinning" might be more likely.

More interesting new about hair is that - I plucked my eyebrows this morning for the first time in 4 months! and my nana-goatie hairs are on the regrowth - apparently the massive dose of steriod I'm taking will truely kick in a big pile of testosterone, so I may have more whiskers than glenn very shortly - and alreadly searching a good waxing bar.

Day 2, of cycle 1 all done!

The high dose of dexamethasone (steriod) has already got me in fighting-mode - so this is your one and only warning - and a likely Michele "mood" for the next week or so ,,,,,, I'd be ducking and weaving if I were you ,,,, only the brave and stupid will approach (with much care and full body armour!)

I'm even getting dexamethasone eye drops ,,,,, and of course all the anti-drugs you can possibly imagine - anti-nausea, anti-dry-eye, anti-insomina and anti-constitpation !!!  Nexium for the intergestion caused by all the drugs!

Prevention drugs have been reinstated - fluconazole and bactrim DS

I haven't come home in the "happy-sunshine" mood I'm normally in, but hoping it will pass, as soon as I get my head around everything I hope.

Shorter day tomorrow (or so they say) but I've discovered that it generally will be over, when its over.

Day One of the Second Beginning of the END!

Things were a little unorganised at the clinic this morning after the long weekend , however once seated it all started to fall into place.

GT - my right hand man!

Waiting for the next round!

I had my secret "anti-anxiety nausea" tablet, because I was starting to feel sick in the stomach before anything had started.

Finally my drugs had arrived, the canula was in and the pumping machine was off and running.  I had started to settle in then after about 10 minutes, I started to feel funny - eye's were really itchy, feeling hot, rednees of the face, dizziness, shortness of breath, unable to breath through the nose and my ear drums were bulging outwards with my increased heart rate (very bizzare feeling!)  Yep, allergic reaction to the E in Rice (the Etoposide).

In rolls the big Kahuna (Dr H), the anti-allergy drugs are pumped into the line, the oxygen bottle is rolled up and I take oxygen to help with the breathing ,,,, and finally after a flutter of nervous activity for about 10 mins or so,  thankfully things settled down.  A relief to all the other patient "onlookers" as well I could imagine!

The best part was I got rolled out to the "bridal suite" and got to have a room and bed to myself, and have a little sleep for a few hours while the worked out what to do next and continued to pump Mabthera into me.

SO - what next? New drug regimen - called DHAC.

A two day chemo treatment with 21 days rest.

Dexamethasone (DH) is a steriod and a huge part of the treatment
Cytarabine (A)
Carboplatin (C)

Tommorrow off the the juice-bar again for another go.  Can't wait!

Flame-grilled chookie and GT is cheerin' the Dragons sweet success!

DRAGONS DEFEAT ROOSTERS IN 2010 NRL GRAND FINAL

While there is a big event occuring in my life, it cannot go unmentioned that there has been a big event in GT's life TODAY, oh yes, the Dragons got up for the first time in 31 years!  Wayne Bennett is a legend.

While the game is done, the sweet smell of chookie roasting will linger in the Thompson household for probably much longer than I bear to consider, however, for Glenn I am happy.

Special thanks to our friends Ali and Trav who hosted a lovely NRL Grand Final bash in the GONG, and who were brave enough to invite Glenn to partake in the event, considering how Dragons-mad he truely is.

The Lone Fig ,,,

,,,, was a nice bottle of semillion sav blanc, that we had at Hornsby RSL after the meeting with the big Kahuna.

(up front I apologise for any slurring ,,,,)

The biopsy was inconclusive.  And the guy that would normally do the key-hole biopsy is in the USA, so Dr H (aka the big Kahuna) feels that the PET scan should stand with its conclusion of "Residual disease" about the size of a LARGE KIWI fruit.  We could wait another 4 weeks to have key-hole surgery to confirm there is residual lesion or just "go for it" on the outcome of the PET scan. 

We have decided to go with the PET scan diagnosis ie (assume residual disease) therefore chemo will start on Tuesday! Ah! Tuesday is 6 1/2 hours chemo, then Wednesday and Thursday are another 4 1/2 hrs chemo treatment.  This is different treatment from the first chemo set - instead of R-CHOP its called R_ICE, therefore I am offically a ICE addict for 3 months.

R stands for rituximab (Mabthera)
I stands for Ifosamide
C stands for Carboplatin
E stands for Etoposide

RICE is used for second-line therapy prior to autologous stem cell transplantation for relapsed or primary refractory diffuse large B-Cell lymphoma (DLBCL)

Each 3 day chemo treatment has a 21 day recovery cycle, and after the 2nd chemo treatment we will do another PET scan to see how things are going.

Finish the chemo, and then there is approximately 4 weeks radio and after the radio is the stem cell transplant.  Expected end of this treatment is Feb 2011.

Here I go again!