Thursday, 5 April 2012

Today is Transplant Day!

Well, here I am 6 days into my hospital stay. During those 6 days I've had 10 chemotherapy treatments. All in preparation for today's Big Event: The Stem Cell Transplant! It is scheduled for early this afternoon. So far, I have continued to feel pretty well. I'm certainly tired a lot, but that's my biggest "complaint" thus far. I did feel yucky for a few hours yesterday, but it wasn't too bad.

The transplant will be done here in my hospital room. My stem cells will be defrosted here, and then given back to me through my central line. Sounds like it should be pretty straightforward. The nurses have said that it takes about half an hour. During which time they monitor my vital signs closely, and afterwards too, of course.

I hope to give another update not too long after the transplant :). Thank-you so much for your continued prayers!!


Saturday, 31 March 2012

Here I am...

...on the transplant ward.  I arrived yesterday at 1:00 in the afternoon.  I got the information that they had a bed ready for me on Thursday.  Even though I've been preparing for this, the finality of leaving my family was very hard.  I put on a brave face for my children, and they took the departure very well, which was a huge relief.  I was able to keep my cool until we left the driveway, then I fell apart :(

The admission process was pretty uneventful.  The room is definitely the hotel version of the hospital.  All room on this ward are private (to prevent the spread of infections; a huge concern as my immune system will be wiped out).  I have a nice big window, and my own bathroom.   The nurses are all super nice :) Nurse Ratchet would definitely not be allowed here!

Waiting to get here seemed like being on a huge ship navigating the waves, knowing that the land ahead would be the battleground.  On that ocean voyage the swell of the water rising up to meet the ship as it travelled here to this new land gave plenty of time for reflection.  How would the battle ahead be?  Would it start right after coming ashore?  The battle looming ahead seemed surreal.

I already had a chemo treatment yesterday.  It went well, I didn't feel sick.  I did get a post-chemo headache, and I felt pretty tired.  I am in fact hooked up to chemo treatment number two right now...and another one will come at 11:00 this morning.  I think it's only 2 today.  I will have chemo for the next 4 days.  It will probably be grueling.  I wonder what side effects I will get, and how bad will they be.

All the saints in heaven are with me, your prayers are lifting me up, and I am summoning the strength of Boadicea (ancient warrior queen circa AD 60), and the courage of William Wallace (Braveheart).

The battle has begun in earnest:  The chemo has been initiated...there is no turning back.  Treatment is the juggernaut put into motion, it's rolling down the hill to rock bottom where it will go uphill on the road to recovery.  I am intertwined with this juggernaut.  Scarily exhilarating. 

P.S.  I added two other entries to my blog to catch up on the last month.  Thanks for reading :)

Details and Delays

The days that passed after the stem cell collection were mainly uneventful health-wise.  It was a breath of fresh air to feel like myself again, instead of the "toxic" version of me with chemotherapy effects flowing through my body.  It was also great to get my energy back again.  

I did have several doctor appointments.  One on March 14th, was to discuss the  impending stem cell transplant (a.k.a. bone marrow transplant).  We went over my medical history, and how the chemo went, and how I responded to it, etc.  We also discussed the results of my CT scan.  I responded very well indeed to the chemo; the tumors are gone!!!  Praise God!!!  This news was wonderful :) It was also necessary, as a good response to chemo is part of the road to transplant.

So, all systems go for the slated date of hospital admission for March 20th, right?  No, guess again.  I had already developed a cold.  Quick!  Hurry up and wait!  I was frustrated to say the least.  We had tried to get everything organized for the 20th as being D-day.  *sigh*.   My cold turned into a semi-laryngitis situation.  There were a lot of children sick at the school (including mine...) so getting sick was relatively unsurprising.  

While things were still up in the air for the admission date, I still had to have my central line put in.  It was put in on March 19th.  It's similar to a PICC line, but it's inserted in the chest, not the arm.  Here's a picture:

The procedure was fine...helped along with "twilight sleep".  It's a medication to sedate you so that you don't remember experiencing it, but you are still responsive to what the nurses and doctors say to you.  Creepy, but cool.  Not to mention better than remembering the procedure! 

Things went along fine until the evening of the 20th.  My line started  bleeding.  Not lots, but it didn't respond to applied pressure.  After a call to HealthLinks, off to the ER I went.  I was not amused.  This road has been far from smooth, and the thought of more complications was depressing.  Fortunately, this time I didn't have to wait long at all.  In about 20 minutes I was being seen by a doctor (MUCH better than the ER trip in February...). They changed my dressing, did bloodwork, and read my vital signs for awhile.  The bleeding stopped, and so I went home.  I was able to sleep in (thanks Moe and Mom!).  When I awoke, the bleeding had started up again.  So, this time I just went to CancerCare since it wasn't late at night.  I had my dressing changed again, and this time they added some "steri-strips" that helped make a clot.  (Why didn't the ER doctor do that?). Anyways, all has been well with it ever since.  I was also prescribed antibiotics to prevent infection of the line, as well as to see if it would have any effect on whatever bacteria might be keeping the cold stay with me.  Why did the bleeding start to begin with?  Who knows, but likely my blood thinner, Dalteparin, was the culprit...despite not taking it for a few days as instructed.  Oh well.

I now had to wait until I finished the course of antibiotics before I would be considered for admission.   I felt stuck in limbo waiting to get things started.  It was tiresome to not know when things would move along, as now "my" bed on the transplant ward was no longer available.

The silver lining to these delays meant that I was able to be at home with my children for spring break.  It was nice to spend those lazy days at home with no morning rush.  We didn't do very much, but it was pleasant.  I was also able to get a few more things done on my "before going to the hospital" household checklist.  

Then on Thursday the 29th,  I was finished my antibiotics, and they had a bed ready...

Stem Cell Collection

Stem Cell Collection February 29th

That particular day was certainly a mile marker on this journey.  I was on a double dose of Neupogen (bone marrow stimulant via self-administered injections) for 5 days prior to the collection.  Since I usually get quite sore after a few days of this drug, I was anticipating a lot MORE pain with a doubled dose.  Happily, I didn't experience greater pain :)

The collection (a.k.a. "harvest") was actually scheduled for the day before.  However, I didn't have enough stem cells circulating in my blood on the 28th.  So, Leap Year day it was.

Taking a quick step back from my story, I just wanna say that seeing some medical advancements is pretty neat.  Stem cell collection used to be way more invasive/painful.  In previous years (15-ish years ago), bone marrow was extracted from the hips under general anesthesia.  Then the marrow was returned to your body intravenously.  Now, after taking the Neupogen, the body makes enough stem cells in the bone marrow to "spill the banks" of the bones that they enter the bloodstream and can be collected directly from the blood with just two needle pokes (one in each arm).  The machine used to collect  the stem cells  is similar to a dialysis machine, but is called an apheresis machine.  Blood is taken from one arm, sent through the machine where it is put through a centrifuge, the stem cells are spun out, collected in a bag, and the rest of the blood is returned through the other arm.  I think that is amazing!  How does the machine "know" which cells are the stem cells?  All parts of the blood have different densities, so by spinning it in the centrifuge, the components are separated into "layers" by weight.  The nurses were looking for the "buffy layer" and tinkered with the machine until the proper level was reached.  (The buffy layer is also called the buffy coat.). If your curiosity is piqued by medical stuff, please visit the following link for some more info about the collection:

The whole procedure took about 4 hours total.  During that time I was restricted to a bed, as both arms were attached to the apheresis machine.  And I, of course, asked many questions :) else would I have found out that during the procedure my entire blood volume circulated through the apheresis machine THREE times!!  As the blood goes through the machine it is mixed with an anti-coagulant.  I also got calcium added back in as my levels get depleted during the procedure.  The nurses told me to make sure to eat calcium-rich foods that evening.  I took that to mean that I should eat ice cream ;). I was very, very tired after the whole thing, but felt pretty much fine the next morning. 

The whole thing was made very tolerable, indeed pleasant, by bringing along my lovely assistant, Nadine <3 She kept me entertained, photographed the proceedings, fed me chocolate, and helped me drink my "martini".  If you want, you can check out some pictures on my Facebook page:

Sunday, 4 March 2012

Gratitude is the music of the heart...

...when its chords are swept by the breeze of kindness.

Last weekend there was a most amazing event...a fundraiser called "Hats off to Heather". A truly wonderful group of women joined forces and planned, organised, and orchestrated the beautiful afternoon tea. They also created a fundraising website. Never have I been so humbled in all my life. Never have I been so aware of God's graces and blessings as He worked in the hearts of everyone who was involved in every way (their planning, their donations, their attendance, etc.).

To have our family and friends come together with the communities at St. Ignatius and St. Gianna's to pour out their love and support for my family is incredible.

I am SO very thankful and SO very blessed.

Thursday, 16 February 2012

The Long Two Week Roller Coaster Ride

Quite a bit has happened since my last posting on here...

After my last "mega-chemo", my arm with the PICC line started to hurt.  I had pain radiating down from the PICC which extended right down to my fingertips.  I dismissed it initially as perhaps I slept on it weirdly.  Well, after a few days, that was no longer a valid excuse.  So, I called my clinic nurse on Monday.  She in turn checked with my oncologist who said that it was likely a blood clot and I was to come in right away to have the PICC removed.  A blood clot?!?

I duly arrived at CancerCare and had my PICC removed.  (It comes out quite readily; you just literally pull it out.  Kinda gross and a bizarre sensation, as there are just enough nerve endings inside the vein to feel it sliding out - ICK!)  I needed an ultrasound to confirm if there was indeed a clot.  The ultrasound was the next afternoon (Tuesday).  The tech spent about 1/2 hour going over my whole arm from neck to wrist.  The results were looked over immediately and YES I had a clot (a.k.a. DVT deep venous thrombosis).  I went to CancerCare with the results in an envelope and then met with my oncologist and the nurse and the pharmacist to discuss the treatment for my blood clot - blood thinners.  [Aside from the arm pain, I had no other symptoms of a clot (no noticeable swelling, no colour changes etc.) which is another reason that I didn't call the nurse sooner.]

So, I'm now on a blood thinner (dalteparin) which I give myself via injection once a day.  This needs to continue for 3-6 months.  Geez.  Interestingly, the blood thinner doesn't actually resolve the clot; your body does that itself.  The blood thinner prevents more clots from forming.  Turns out that omega 3 assists your body in dissolving the clot, so I have been taking flax oil as well.  NB:  fish oil is a superior form of omega 3, BUT that is contraindicated for my condition.

The next evening (Wednesday) I was reading on the couch.  As I was able to really pay attention to how I was feeling, I realised that I just didn't feel well.  It was hard to put my finger on what was wrong.  I just really didn't feel myself.  I had the sensation that someone was sitting on my chest.  It was very weird.  I sat up for awhile trying to evaluate what the heck was going on to make me feel so unlike myself.  The feeling didn't feel worsen, so I went to bed as chemo was the next day.  I figured I could mention the chest pressure thing to them whilst in the chemo ward.

So, at chemo while getting my "chemo-lite" I mentioned how I was feeling.  After answering a few questions, they consulted with my oncologist who ordered an EKG (!!!).  The EKG tech showed up very shortly, hooked me up to the machine and got the print-out.  (It takes longer to hook you up to the machine than the actual test, haha.)  My doctor looked over the results and they weren't normal.  I was flabbergasted.  He asked me more questions about how I was feeling and then had the nurse give me a dose of nitroglycerin.  This was a surreal experience - nitroglycerin!!!  I knew that it's used to prevent/treat heart attacks.  WHAM - there was my mortal existence staring me in the face.  Really, up until that point, I've never felt seriously ill.  But talk of heart problems was flat out scary.

So, from the chemo ward I was transferred to the ER.  So, there I sat, and sat, and sat.  I presumed that since I had heart attack symptoms I would be seen without too much delay.  Nope.  I wasn't seen for nearly FIVE hours.  (Was that because I already received nitroglycerin?  Because my EKG wasn't too bad?  I don't know.)  I understand that the sickest people get seen first.  But 5 hours with those symptoms?  (Quick aside:  In 2008 when I went to the ER with a high fever and was getting ready for chemo I was seen in under half an hour.)  Anyways, so I was hooked up to a heart monitor, had another EKG (normal) and a chest x-ray.  After another 3 hours I was sent home (it was 1:30 AM).  What a looooong day. 

The next few days I felt unusually tired.  I didn't have much energy at all, and felt slightly winded after going up a flight of stairs.  So, I took it as easy as possible and rested whenever I could.  Fortunately, after several days I felt a lot better.  I am waiting for an appointment with a cardiologist, which should happen in the next few weeks.

That was a very difficult week indeed.

Aside from all that, I met another doctor from the team and got to ask more questions about the upcoming transplant.  The day of the DVT ultrasound, I received an information package about the whole bone marrow/stem cell stuff.  The title on the binder is "Autologous Hematopoietic Progenitor Cell Transplant - A Handbook for Patients and Families" or, as I like to call it, "The Binder of Depression".  It outlines the procedure for the stem cell collection, what happens in the hospital, all the possible side effects of everything, and how your life will be for about 6 months after the transplant.  What heavy reading material - UGH.  I never viewed the transplant as something to take lightly, but having the whole procedure spelled out in front of me was a grim reminder of what a journey is still to come.  (Since the Binder of Depression has to cover off all possible side effects/scenarios, it definitely is depressing.  It's to enable informed consent, but geez

There was the possibility that the blood clot/heart issues/referral to the cardiologist would have delayed my next round of chemo.  Fortunately that is not the case.  I go for my "mega-chemo" today.  I pray that there are no complications with this round...

Sunday, 29 January 2012

Climbing out of the Chemo Chasm

This past Thursday was my "mega chemo" day (3 chemo drugs, with lots of IV hydration before and after).  This was the second time I've had this particular treatment, and just like the last time, it took a toll on me.  Exhaustion is at an all time high, and some nausea to boot :(  Fortunately, I was able to spend a lot of time resting in bed this weekend, which has helped greatly.

I got the results of my bone marrow biopsy:  "Diagnosis:  Variably cellular marrow with no morphologic evidence of involvement by lymphoma."  Translation:  My bone marrow is NOT involved at this point.  Meaning that my cancer is at a lower "stage".  (I didn't find out which "stage" I'm at; I'll save that question for another appointment, as the stage won't alter the treatment I'm already on.)

This good news does NOT alter the fact that I will still be going through a bone marrow transplant.  That has always been the plan, and is still my best chance for not having to deal with cancer again in the future, God willing.  I was able to get some more information about the bone marrow transplant (BMT).  As it turns out, Stem Cell Transplant *is* the same thing.  (Please excuse my ham-handed attempt at paraphrasing some details...) When BMT was newer, harvesting the bone marrow was the best way they had to extract the stem cells.  It was a more invasive procedure (the harvesting was done under general anaesthesia and used needles to draw out the marrow, typically from the hip bones).  This procedure is probably still used in some cases, I'm not sure. 

When they harvest my stem cells, I will be hooked up to a machine that looks vaguely like a dialysis machine, and they will take out my stem cells via my bloodstream.  They will be able to use my PICC for this, so no additional jabs will be required, yay! 

After the harvest (sounds so ghoulish), my stem cells have a date with they cryogenic freezer, and whatever else they do that takes 2-ish weeks.  Then I will be admitted to the BMT ward, have BEAM chemotherapy (4 days straight of mega-dose chemo to kill everything), and then they will transplant my stem cells back into me, again via my PICC.  Then I will get more Neupogen (the same bone marrow stimulant I have after my chemo-light treatments) and travel the road of post-transplant recovery. 

I still don't have all the details for the BMT timeline/etc.  I will be getting more printed information when I go in for my "chemo light" (only 1 drug, followed by 5 days of Neupogen injections) this coming Thursday.

Time to get the kidlets (and then me) to bed for the night :)
Thanks for reading!