Thursday Dec. 30th (Day +21)

Hanging out Christmas morning

Sophie & James cuddling - so cute!

Thank goodness things have been fairly uneventful since we've been home...we had a wonderful Christmas together as a family, very relaxing and stayed in our pj's most of the day!  It's hard to believe that so much time has already passed and it's time for me to return to work this weekend.  But I'm ready to go back, if for nothing else than to feel that our lives are starting to return to "normal".

Today at clinic we were in and out in an hour and a half, not setting any records but pretty good going!  Labs are more or less continuing to trend in the right direction.  All of Brian's blood counts (hemoglobin, platelets, and white blood cells) are slowly but surely regenerating and repopulating.  His creatinine is his biggest rival right now (and very possibly forever), as it's wavering around 3.  It went down as low as 3.05 this past Monday and was up to 3.19 again today - not huge jumps like before, but discouraging that it went up versus down.  So Brian's job right now is to drink as much as he possibly can and to work on eating more - sounds like a dream come true to me, but sadly it's a chore to him.  On a good note though, we don't have to go into clinic for another week!  And if his counts are stable next Thursday they'll decrease his visits to every two weeks - sounds good to us!

So now it's all about eating, drinking, and getting some energy back.  Just wait until a Guinness tastes good to him...it will be difficult to stop him once he starts!

Thursday Dec. 23rd (Day +14)

Went to the Clinic today, all I needed was some more IV fluids. My WBC is 5.6, platelets are 21 and creatinine is 3.19. So all in all everything is getting better each day. We now don't have to be back at the clinic until Monday which is a great 'present'.
It has been a long hard road to get here and I want to say thank you to everyone who sent messages of support and encouragement and everyone who just looked in on the blog. The prayers and positive thoughts from friends and family have been enormously appreciated and meant a lot when I was on the edge.
So thank you for helping get me through this and I hope you have a Merry Christmas!
Brian

Wednesday Dec. 22nd (Day +13)

Today has been a great day!  We started with a visit in the clinic at 7am - bright and early.  Labs continue to improve - white blood cell count is up to 3.6, hemoglobin 7.1, platelet count 12, and creatinine 3.3!!  So all in all, Brian's body is healing itself!  It will take anywhere from 3-6 months to fully recover all of the counts, but at least we're continuing to trend in the right direction.  We've been told that the creatinine would slow down in its' decent towards normal, so the small decline is neither surprising nor discouraging.  In fact, I was encouraged that it continued to decline when this was the first time in over two weeks that Brian has not been on continuous IV fluids.  Brian is still very tired and spends most of his day resting, but he is doing remarkably well walking up and down stairs, eating meals with the family, etc.  He is a real fighter and can't wait to get back on his bike!  He's already organizing getting his bike and the trainer over here to my parents' house so that he can start riding again next week!

After the clinic visit we visited our house to gather a few little things and then hung out with the kids the rest of the day at my parents house...our home for the time being.  Sophie has been great with Brian.  At first she was a little timid due to the lack of hair, but after a little while she cuddled up next to him and has hardly left his side since.  I've included a photo of them hanging out in bed watching tv - very sweet!

Tuesday Dec. 21st (Day +12)

Guess what?  We're going home!!!  Brian's recovery has been amazing over the past couple of days.  His creatinine has dropped steadily and is now 3.5 (normal is around 1, so we still have a ways to go but we're safely "out of the woods"), white blood cell count jumped from 0.7 to 1.9 today, and all other labs are holding steady.  He hasn't needed any transfusions over the past 2 days, so platelets and hemoglobin are maintaining - they still have a long time before they're normal, but at least he's not continuing to drop each day.  Electrolytes still need some tweaking, but that's not too big of a deal.  So he'll have clinic appointments tomorrow and the next day and then hopefully they'll drop down to 3 days a week - so basically we spent our busiest time in the hospital.

He officially started losing his hair two days ago and decided to shave it all off yesterday...but as of right now eyebrows, eyelashes, etc haven't started coming out.  Here are some pics!

Hair's falling out...very patchy so it's got to go!

Action shot!  We thought stripes would be a good look...!

Notice he's near the exit sign...ready to flee when they give him the "okay"

Monday Dec. 20th (Day +11)

Today has been a good day!  Counts are improving, Brian is eating a resting better, etc.  It's been busy and I'm heading home to see the kids now, so I will post more information tomorrow with some photos of the balding man!  Sorry for the short entry today...the day just kind of got away from me.

Sunday Dec. 19th (Day +10)

I think things are slowly but surely getting better each day.  As I said to a friend today, I can't completely relax and breathe a huge sigh of relief yet, but I've definitely breathed many small to medium sighes lately.  Brian is still pretty fatigued, but I think that's going to take a while to come back.  But he's generally doing better - eating and drinking more, resting better, getting up and around more, etc.  He got up and had a shower today, which really wore him out but at the same time felt really good.  Last night he sat up and watched a movie...so he's making strides!

Counts today were ok - creatinine fell to 5.17 and white blood cells came up to 0.5!!  These labs alone show that his body is making a fantastic recovery!  Platelet count was back down to 6, so he got another unit of platelets and his hemoglobin was 6.9.  Potassium level was down to 2.7 (normal is between 3.5-4.5), so he's gotten lots of IV potassium today.

I've included a small picture of his petechiae rash on his arm.  The doctor said it should all resolve in about 3 weeks or so when his platelet count is normal.  It's nothing that itches or hurts, it's basically little tiny bruises from his capillaries bursting due to his low platelet count...

Saturday Dec. 18th (Day +9)

Slightly out of focus, but mildly cheerful picture of Brian :)

I'm happy to report that today is a better day!  Although he's still very tired and worn out, Brian is finally feeling a little bit better.  He was able to sit up in a chair and eat some cornflakes for breakfast, and has sipped on a milkshake for lunch.  He even thinks a grilled cheese and french fries might sound good for dinner!  I hate to think what our grocery bill is going to be when his full-blown appetite comes back...

His counts today are better, too!  Creatinine has finally budged and is down to 5.6 - yay for his kidneys!  White blood cell count is at 0.3, hemoglobin is 7.4, platelet count is 11 - so no transfusions needed today!  All in all things are looking up.  Dr. Abhyankar (the BMT doctor on service this week) thought he might even be able to go home by Tuesday as long as his fevers subsided.  He still had a high fever this morning, but it has started to go down this afternoon - let's hope it continues to trend that way.

One of Brian's friends encouraged us to rename the blog so that it isn't so much of an "ownership" of myeloma...we'd love to hear any thoughts or suggestions you all might have.

Friday December 17th (Day +8)

Well, today has been another difficult day, but overall I still feel more positive than I did several days ago.  Brian just generally feels crappy and tired.  He's still having fevers of 102-103 degrees F.  He's now on two different IV antibiotics - cefepime and vancomycin (for all you healthcare providers out there!), Tylenol every four hours, and right now he has 3 ice packs around him (it sounds horrible to me, but he says it feels good).  His blood cultures have not grown anything and his chest x-ray was clear, so they don't actually suspect an infection at this point in time, the antibiotics are mostly prophylactic.  The doctors have said that when patients start engrafting (meaning when the bone marrow starts reproducing white blood cells) they can have high fevers and a full body rash, which he also has.  Although it's difficult to watch him go through all of this, I feel encouraged by the fact that the doctors are not too concerned about these symptoms.  And his white blood cell count went up to 0.2 today, so that's cause for celebration!  I think I'll have a glass of wine for him tonight.

"Chilling out"

As for everything else, his creatinine is still about the same.  It was 6.09 today, but other labs are trending in the right direction - BUN (another kidney-related lab value) went down quite a bit and all of his electrolytes are fine.  The renal doctor this morning said that he didn't expect his creatinine to start coming down until he no longer had fevers...we'll see.  His platelet count was very low this morning - only 5, so he got a platelet transfusion.  He hasn't had any signs of bleeding (nose bleeds, etc), so that's good.  I did notice lots of petichiae (small, little purple spots that are actually tiny hemorrhages) on his legs, so we'll be careful about those.  Hemoglobin is back at 7.0 so I'm guessing he'll have another blood transfusion tomorrow morning.

Heather starting his platelet transfusion

Half-full bag of platelets

I finally figured out how to upload a video (thanks Betsy!!), so here is Brian getting one of the four syringes of his stem cells!
Brian's Transplant video

Thursday Dec. 16th (Day +7)

Here we are again...yet another day.  First I think I should explain the way the days work - a couple of people have expressed confusion over the +6, 7, etc.  Everything revolves around transplant day, so that's considered Day 0.  Since chemo is prior to transplant it's negative days (i.e. Day -3, -2, -1) and now we're in the post-transplant days!  So the most crucial days post-tranplant are days 5-12 and we're on day 7.  Hopefully by day 12 there should be a big step forward in how Brian's feeling.  Yesterday was not a good day.  Brian started feeling pretty bad around lunchtime and just kept getting worse all day.  By 8pm he had a fever of 101.3 F, extreme nausea, and fatigue.  Due to the high fever, they did blood cultures and started him on IV antibiotics.  I didn't leave the hospital until about 9pm and when I spoke to him this morning he said he had been vomiting all night.  So needless to say, he was pretty discouraged this morning and ready to throw in the towel.  The nurse he's had yesterday and today has been wonderful and she really advocated to switch around his nausea medications, so today has been a much better day!  By 9:30am he said he actually felt human again.  He even started making a few jokes here and there, so I think he's on the mend.  He made a comment to me about how when this is all over he's going to thank me properly by taking me out for a Guinness...I'm not quite sure that's what I would want (I can't stand the stuff!), but if he can drink a Guinness I think we'll be back in business!

As far as his counts go, things are still pretty stable.  His platelet count dropped to 18 today,  so he'll likely need a platelet transfusion tomorrow morning.  They didn't budge for so long (we thought he may not even need a transfusion) and then all of a sudden they just plummeted.  Oh well.  Creatinine hasn't budged, it's still hanging out at 6.1...the good news though is that it hasn't gone up any more, so they're hoping this is the plateau and the downward slope will hopefully start soon.  Please say a little prayer that that happens.  White blood cell count is still 0.1 - we're hoping they start reproducing in the next few days.  Hemoglobin dropped a little bit to 7.2, but the drop is likely due to all the blood they had to take for blood cultures and labs (almost 100mL!).  I'm guessing he'll be in the hospital for another 5 days or so, we just want him home for Christmas.  And then we'll be back to being a clinic patient - can't believe that actually sounds easy!  Funny how perspective changes...

The kids and I are all doing fine.  My mom has been wonderful and took 2 weeks off work to help with the kids...thank goodness or I don't know what we would have done.  Sophie is very excited for Christmas, I have a feeling that this will be our first year that we'll be awakened at 5am with her excitement.  James is just cruising along without a clue that anything is wrong with Daddy.  He senses that Brian is different and doesn't have the energy that he had before, but every time they're sitting on the couch together James tries jumping all over Brian...just like he always does!  My parents are doing well, but I know my mom could use a break...so if anyone has any free time just give us a shout and we'll take you up on your offers!!

Here's a picture of Brian walking around in his new robe this morning!  He still looks pretty good (even though he hasn't shaved in a couple of days)!

I'm too sexy for my robe...!

Wednesday Dec 15th (Day +6)

First of all, sorry we didn't post yesterday...we were both just too exhausted.  Brian is increasingly more tired these days and spends most of the day in bed.  It's kind of weird because he's never been a napper, but naps are good for him and he doesn't wake up feeling worse than before (which is how he would normally feel after a nap).  Eating is his biggest hurdle right now - he still doesn't have too many mouth sores, maybe a few little spots, but the sight, smell, and texture of food is appauling to him and makes it very difficult to eat anything.  Drinking is now fine as long as the taste is ok.  Berry flavored Propel water is his drink of choice at the moment!
As far as his "stats" go, we think his creatinine has finally peaked!!!  Today was the first day that it didn't go up, it just stayed about the same...so 6.12 is the new record for him.  He was very close to having a dialysis catheter stuck in him, but hopefully we have avoided that altogether.  They'll draw another level tomorrow morning and we're hoping for a number in the 5 range.  His other counts are abnormal but expected post-chemo.  White blood cell count is 0.1 today.  They started the Neupogen shots again yesterday to start boosting the stem cells out of the bone marrow and into the blood so that they will function as baby white blood cells.  Hemoglobin went up again to 7.7, so no further transfusions needed there.  Platelet count dropped to 51 so he will soon be at risk for increased bleeding...so no shaving except with an electric razor, no flossing teeth, and other things like that.  Overall he's doing pretty good, just very tired.  Hopefully in the next 4-5 days he should start perking up a little bit more and hopefully will also start getting his appetite back.  At that point they'll let him come home - just in time for Christmas!
Thanks again for all of your prayers and support - they have helped tremendously so far!

Monday Dec. 13th (Day +4)

This is going to be a short blog entry...I'm getting ready to leave hospital to go home and see the kids and thought I should write a quick note here.  Creatinine was 5.67 this morning, still trending up.  The kidney doctors and the BMT doctors are both happy to continue watching it at the moment because Brian still isn't showing any signs of being "in trouble" from his kidney dysfunction...he's not puffy anywhere, still making lots of urine, lungs are still clear, and potassium level is normal - all good signs.  Hemoglobin was 6.3, so he got his first blood transfusion this morning.  The doctor was optimistic that it could potentially be his last transfusion as well!  Platelets continue to be ok, they're lower now at 111, but nowhere in need of transfusion.

Having his dressing changed by his nurse, Brooke

Having his first blood transfusion

All done!

This afternoon Brian seems to have turned some sort of corner and is eating and drinking a little bit easier.  He still needs very soft foods and liquid, but doesn't feel like he's going to gag or choke with every bite.  This alone has cheered him up quite a bit.  He is still longing to guzzle down an ice cold glass of water, but that will come in a few days.

Sunday Dec. 12th (Day +3)

It's Kristy writing again...Brian's been in bed most of the day.  He's feeling pretty bad and not looking foward to potentially feeling worse over the next week.  His creatinine today was 4.9 and they're going to check it again in about an hour.  No plans for dialysis yet, just monitoring things.  He's still producing a lot of urine and his electrolytes are ok.  They said at this point it's unlikely to need dialysis, but they still want to keep him because it's a fine balance between a high creatinine and a low white blood cell (WBC) count.  His WBC count today is 0.7, they expect it to drop again and hit it's low point tomorrow.  Dr. Aljitawi rounded on him again this morning and said that it may not drop all the way to zero, it may bottom out at 0.2 or 0.3...we'll see.  Then they start giving him the Neupogen shots again on Tuesday to "encourage" his stem cells to come out of the bone marrow and start fighting infections.  Hemoglobin was 6.8, so it's also dropping but no blood transfusions yet.  Platelets are 144, they haven't budged too much in the past few days, so we're good there.
Basically, we know we're entering a very hard week, but that doesn't make it any easier to cope with feeling like crap.  At least he still doesn't have any mouth sores or skin rashes, that's a plus for him!  At the moment it's still difficult to eat and drink just because of the thick coating in his mouth and throat - he feels like he's going to choke every time he tries to eat something solid.  Nausea is still slightly problematic but it's getting better.
That's about all for now, I'll write more tomorrow.

Saturday Dec. 11th (Day +2)

It's Kristy again writing this blog...Brian is pretty wiped out and sleeping a lot of the day.  He's still in the hospital and the BMT (Blood and Marrow Transplant) docs have already rounded on him this morning.  His creatinine went up to 4.49 but the rate at which it's increasing has slowed, so they are very encouraged by that.  They want to go ahead and keep him here until it peaks just in case he were to need emergent dialysis, then he'd already be here instead of at home.  The kidney doctor who saw him last night said she thought he'd be able to get through the weekend without dialysis and maybe even squeeze by without having any at all.  The factors that will determine if he needs dialysis are if fluid builds up in his body and therefore into his lungs causing him to having difficulty breathing, or if his electrolytes get all out of whack and his potassium gets to a dangerously high point that could cause cardiac issues.  He's still making a lot of urine and his lungs are clear, so hopefully we won't get into any distress on that end of things.  His potassium has gone up a little bit, but it's still in a range that is tolerable, so we'll wait another day and re-evaluate tomorrow.

As far as his other numbers go, his white blood cell count (infection fighting cells) has dropped to 1.7 - they expect it to be zero in another 2 days.  Kind of scary.  His hemoglobin is 7.1, so he will likely need a blood transfusion in the next 48 hours or so because they want his to stay greater than 6.5ish.  Typically they transfuse patients who are less than 7, but I talked him into tolerating a lower count as long as Brian isn't symptomatic!  He said that young, healthy males can usually tolerate hemoglobin counts of 5 but he wasn't comfortable going quite that low.  Platelet count is still holding strong at 145, so he may be able to escape without a platelet transfusion.  Dr. Aljitawi (the BMT doc who saw him this morning) said he wouldn't expect his platelet count to be dangerously low for about a week and then his counts should start recovering, so he may be one of the lucky few who don't need a platelet transfusion (they like to keep it greater than 10).

Walking the halls of the BMT unit, sporting his Guinness PJ's...longing for the days he'll be able to drink it again!

His spirits are still pretty good.  Yesterday we were both pretty discouraged about landing in the hospital, but we're fine with it now.  He still doesn't have any mouth sores, just a horrible sticky coating that makes everything taste awful.  I have managed to make him some blueberry shakes, which he's liked a lot so I'll keep those coming!  I posted some pics a couple of days ago, but we hadn't done any in a while, so I will post a few from the past week or so below and I will attempt once again to post the video of him getting one of the syringes of stem cells!  Ok, so no luck with the video...if anyone has uploaded a video onto a blog before, I would love some helpful hints/advice!

His bag of chemo...comes with lots of warnings

Getting his first dose of melphalan...and hopefully kicking him into long-term remission

Sporting his BA (Benadryl/Ativan) pump - we like referring to him as Diego with the backpack!!

His nurse, Celeste, gave him his first ever and hopefully his last ever chemo

Eating ice chips during melphalan infusion to "cryogenically" freeze the lining of his mouth

Sophie cuddling up to Daddy while he's resting in bed

Friday 10th Dec (Day +1)

First thing this morning sitting in reception Beth Harvey (my transplant coordinator) walked in and said she knew I was there...the smell of your body is quite pungent and smells like tomato soup or creamed corn after a stem cell transplant....it will last about 48 hours.
Slept better last night which was due to using the B/A (benadryl/Ativan)  pump on a more liberal basis.
Eating and drinking is not attractive at the moment so must keep plugging away.
Lungs, blood pressure are both fine, just waiting for my kidney results.
Okay so my kidneys are taking a bit of a beating, 4.18 a new record for me. They have hooked me up to more fluids and will be discussing what to do with me next. I guess the battle really starts now and for the next 2 weeks, lets hope I come out reasonably intact.
They decided to admit me in to hospital as they want to push IV fluids to help my kidneys but need to monitor me closely. So here I am and nothing has really happened. More news later

Thursday Dec 9th Transplant Day

So Kristy is writing today's entry because Brian is sleeping away right now.  The first thing we wanted to say is THANK YOU - everyone has been so supportive during these past few months, we definitely wouldn't have made it through so easily without you all behind us.  It's been amazing to see how many people around the world are thinking of us and praying for us every day...  Just in case you're interested, here is a list of all of the countries that have people who are following our blog: Ireland, England, Scotland, Wales, Germany, France, Netherlands, Canada, Australia, Cyprus, Lithuania (not sure who is there!).  We are so lucky to have so many friends and family all over.

The first thing Brian noticed this morning was that his face was a little puffy.  He's had IV fluid running for 48 hours and it's starting to take it's toll, but Dr. McGuirk said he'd rather have him on the puffy side than run the risk of dehydration.  His kidneys are still very touchy - creatinine went up to 3.44 today, even after all of that IV fluid.  It's a bit of a bummer, but we expected it and we'll continue to be positive.  So after having labs drawn and seeing the doctor at clinic we headed over to the hospital for Brian's transplant.  It's all very surreal...I can't really explain how it feels to be driving to the hospital knowing what is coming, but we were both pretty nervous and Brian said he was a little apprehensive.  We arrived on the unit and they had his room waiting for us - nice and clean and with a great view!  He was pre-medicated with some Benadryl and Tylenol to prevent any reaction that might occur - many people react to the preservative that the stem cells are kept in.  And then they started!  They are very protective of people's stem cells (as they should be), they're hand carried everywhere and aren't allowed to leave the sight of the person thawing/infusing them.  The cells were thawed and had to be infused at just the right temperature, so there was a window of about 10 minutes once they were thawed until they had to be infused, otherwise some of the cells could die.  The cells were divided into 4 syringes containing 50mL each of cells.  So one by one the syringes were pushed into Brian's central line, each one pushed over 2 minutes.  In between syringes he would get a little IV fluid and vital signs taken.  All in all, the whole process took about 45 minutes to an hour.  Then they monitored him for about 2 hours and we went home.

A "good looking" syringe full of stem cells!

Getting his transplant - looks like pureed watermelon, smells like creamed corn

Benadryl doing a good job and helping him get some rest

So now we're at home and Brian is resting comfortably.  He's very fatigued and has some intermittent nausea, but overall feels ok.  Next week is when we expect the difficult side effects from chemo to take their toll on him.  So for now I'll push him to eat and drink and make him lots of milkshakes...doesn't sound too bad!

Wednesday Dec 8th (Day -1)

Well, I needed anti nausea meds last night and through the night. Pretty tired this morning. Went into clinic just for labs, this is my 'day off' but we still had to be at the clinic by 7am.
Lab results are all fine except creatinine which went up to 2.51. Home by 10am with another backpack full of saline and anti nausea meds. Tomorrow is the big day...should be fun!

Tuesday Dec 7th (Day -2)

Well my 2nd and final bag of Melphalan has just finished so that's the end of chemo for a while...maybe a long while, we'll see. Next comes the side effects I guess. I was told just this morning that they will peak after transplant so maybe Friday and next week.
My old enemy 'fatigue' is returning, I woke this morning less chipper and starting to feel that low key tiredness creeping in. The window of feeling almost 100% has been short but great, even though I knew it would be taken away. I had been so tired for so long that just to have that 'carrot' of feeling great for a while makes me look forward all the more to getting there again. Creatinine came down again to 2.28.

Monday Dec 6th (Day -3) Chemo day

Got to lab at 7am, nice and early. I had a bit of a false start this morning as I was congested with a bit of a headache. Not good on first day of transplant, or as they refer to it at the clinic 'day -3'. My labs came back fine, creatinine is now 2.42 which is still going down.
So back to my congestion/cold/sinus issue, they irrigated my nose and collected what they found in a pot (never did that before..). Then I had a CT scan of my face. Back in clinic the docs had a chat and decided to go ahead.
After the premeds and 15 minutes of Melphalan we came home. A 6 hrs day, not too bad I guess.
So I'm sitting here writing this with my new backpack which contains 2 liters of saline fluid which will run over 20hrs and my anti nausea pump should I need it.
I got lots of new drugs to take and a mouthwash to use. It's called magic mouthwash and protects your mouth from sores by some degree, so far all that has happened is my tongue is numb!
I can see myself getting tangled in my tubes in bed tonight. Oh well.

Wednesday December 1st - Day 1 of Stem Cell collection

Okay so I'm hooked up to the machine as I write. The 6 out of 10 I scored yesterday has been followed up by a great number 59! So I was aiming for more than 10 and I get 59....always the late bloomer..

As my bag of stem cell filled hour after hour and as the nurses were checking me they always made a comment of what a good looking bag it was. When Dr Ganguly saw the bag he said he thought we might finish the collection in one day.. So after 5 hours on the dot I was done. They took a small amount of cells for testing which takes about 1.5 hrs and Kim (one of my nurses) said she'd call to tell me the score and whether I would need to come back for more collection.

3.20pm Kim called with great news, they had collected enough! In fact they had collected an amazing amount. They needed to get 2.5 million cells per kg (of my weight) per transplant, so the number they/I was looking for was 5 million cells per kg because they always try to capture for 2 transplants. What they actually collected was 12 million cells per kg. That's 960,000,000 stem cells in one day! I don't really know how that helps me, but I guess if I can over achieve in the coming weeks and months to the same tune I can say I would be pretty happy, we'll see.

cleaning up the connection on my central line.

making sure my stem cells are the right color.

all hooked up and relaxing, letting the machines do their work.

Getting hooked up.

The beginning of a 'good looking' bag of stem cells!

Tuesday Nov 30th - Stem Cell harvest

No luck today sadly. I got to the BMT Aphoresis dept at 7am and had blood taken. By 9am the results were back and I scored a 6 when I needed a 10 so harvest is delayed till tomorrow. I was given another neupogen shot and will go to the BMT clinic at Westwood at 6pm for a shot of Mozabil another drug to help the stem cells do their stuff...and back for harvest at 7am again in the morning. I've been told it could take 1 to 3 days to collect what they need.
All my other labs were fine except creatinine which has gone up again to 2.92...which is a bit of a bugger! The reason I have felt so good over the last few days is because of an abnormal white blood cell count because of the neupogen.

Monday Nov 29th - Trifusion Catheter placement.

Went fine, no pictures of my bare chest...not a pretty picture! It was all over before I knew it. I think they upped my meds because I kept talking to the resident performing the procedure, I asked him to 'talk me through' what he was doing... so I got a little something extra to shut me up...funny!
Also interestingly over the past two days I have felt almost 100%...which is surprising! Best I've felt in a long long time.

Wednesday November 24th - Consent Day

So I had a few calls yesterday one saying the transplant had been approved by insurance....which is nice. So we now have some concrete dates:

Nov 25th - Thanksgiving, this was already set.

Nov 26th - Start 4 days of Neupogen injections to produce extra stem cells which encourages them into the blood stream where they can be collected.

Nov 29th - Placing Trifusion Cathater at KU. This is a port in my chest for chemo, meds, stem cells and anything else they want to 'add' without having to find a vein.

Nov 30th - Stem Cell harvest, I'll spend the day (maybe 2) hooked up to the Apheresis machine to collect enough stem cells for two autologous transplants. Half will be frozen for some time in the future.

Dec 6th - Start 2 days of high dose chemo drug Melphalan.

Dec 9th - Stem Cell transplant.

This morning at the BMT Clinic I meet with the doc and transplant coordinator and hopefully they go over all the results of my tests and give me an idea of how I did.
Also I'm hoping for some blood work to check my creatinine level.

Well that was a long day. Started at noon and finished at 6pm, went to Tom & Kathy's to pick up the kids and stayed for pizza, home by 8.50pm.
The consent meeting lasted a few hours and was lots of signing away my life...But the more interesting bit was talking to McGuirk about Myeloma past history and then all my results. During the meeting I had blood taken and my Creatinine is now 2.73. Which is getting better and I feel if we get nearer to 2.0 my kidneys are more likely to survive but really it's hard to say. My kidney function going into transplant is one thing that could very easily go down hill and leave me needing dialysis, that just seems to be the way myeloma has attacked my body. So I am prepared for that, but hoping for a better result. One of the main things I took away from today is that my kidneys are going to play a big role in determining the course of my illness/recovery.

Heart and lung tests are fine. I'm still breathing like an athlete, even though I'm anemic!

The figure 12% plasma cells in my bone marrow which has now come down to 6% (where 5% is normal and anything over 10% is diagnosed as myeloma) was probably a lot higher. When they do a bone marrow biopsy they take out two 'types' of  matter: a fluid, called an aspirate, and a sample of marrow, called a core.  The aspirate back at diagnosis showed 12% plasma cells, but the marrow sample was described as having "plasma cells in sheets and clusters".  Because of the description of the marrow, Dr McGuirk said that 12% could have been much higher and 80% may have been more accurate, which means not a lot now that it has reacted well to chemo and just means that it has improved by a higher percentage. Also, the particular type of abnormal plasma protein my body has been producing, the kappa free light chain, was 398 and now has been reduced to 10 (97% remission).


Side effects he promised me from the high dose chemo (Melphalan) are: Hair loss, mouth sores, diarrhea, vomiting and of course buggering my kidneys to some degree. They will be able to keep me hydrated IV but eating could become a problem as chemo messes up the GI tract from your mouth to your rectum (they call it mucositis...nice word huh) and if I am unable to continue to eat and process food my body will become open to infection, so that will be a concern and a potential reason for hospitalization. All things that are good to know about ahead of time so I don't have too many surprises if things go a little pear shaped. He hopes, of course, that I won't be hospitalized but said he wouldn't be surprised if I needed 2-3 days in hospital soon after transplant because of mucositis, potentially being bad enough to need IV pain meds.
So all this said, I still signed up! The statistic he was able to quote is a median survival of 6 years. This is based on an older population, the average age of diagnosis is 65. So he expects me to out live that statistic given my age and general fitness.
Sorry this has been so long winded, it's just handy to write it all down while it's fresh in my head and gets you up to date with the facts as I know them.

Friday 19th - Busy day of tests.

We needed to be up early to beat the traffic, our (my) first test was at 8am. Kristy's Mum and Dad had Sophie and James for a 'sleep over' which made logistics a little easier.
Pulmonary Function Test: went well, my red blood cell count is low so the amount of oxygen being carried around my body is lowered. Good news was I was still in the normal range before they readjusted my results given the lower O2!

Next was 'apheresis' education....(I wiki-ed it) basically we had a look at the room/machine that will separate my stem cells from my blood. I get hooked up to this machine 5 hours a day for 1 or 2 days to 'harvest' the stem cells that get put back in after the high dose chemo has killed off everything else.
X-ray was next chest and jaw, then onto Heart for an EKG and Echo.
I get a lot of results on Wednesday the 24th along with my consent meeting where hopefully all my results are explained and dates are set in stone for the transplant etc.

My heart...or scary face?

Apheresis machine...it's a little noisy. 

 My blood gets warmed up before putting it back in...with this.

Wednesday 11.17.10

Busy day at the Lab. Financial and Psych meetings, bone marrow biopsy and blood tests. Anyway the good news is my creatinine is down... for the first time in a while. 3.83 down to 3.74 and I'm starting a oral high dose steroid today which hopefully will help the level to come down quicker. Just one more doctor to see and then we are out of here!
All went well, so the best part of today so far is finding out that all on its own my creatinine is coming down...just in time for transplant - hopefully!

Monday Nov 15th 2010

I've been for a few lab test since my last entry and each time my creatinine has gone up and no one knows why. I've seen renal, BMT (of course) and urology and nothing that is shedding much light. Today creatinine was 3.83. I'm not feeling great, the usual nausea, fatigue.
Lots of meetings Wednesday and bone marrow biopsy, busy day.

Tuesday Nov 9th. Unplanned visit to BMT lab

So the Creatinine has been making me feel a little under the weather to say the least. I called my transplant coordinator to check if I should be feeling so bad at this point. No was the answer so back down to the clinic for a blood and urine tests and a ultrasound of my kidneys. As I guessed creatinine is up again to 3.01. CT scan in the morning and more tests with a visit with one of the docs.
They are not sure why the creatinine is so high right now and are checking everything, hopefully I'll know the cause soon.

Monday Nov. 8 Lab test.

I think I've had 3 blood tests since the last chemo session. All my counts have been fine except Creatinine which had been climbing slowly. Today however it jumped from 2.2 last Friday to 2.8 today. This is not what I was planning for it and it is making me feel pretty sick. Hopefully it is a peak from the last of the Revlimid and will get better over the next few days.

November 1st - Last day of 4th chemo session

Well I didn't post anything about last Friday's session because it was so boring. 4hrs, Creatinine came down a tiny amount and that was about it. Everything stayed about the same white blood cell count is trending down as expected blaa blaa.
It's weird I've had some really crappy days where the nausea gets to be a pain and drugs don't get rid of it at all, then the next day it's all rosy comparatively.
So my last chemo session day (scheduled) before stem cell harvest started off as usual at home with Kristy looking for a good vein. James showed he's been watching and learning...

 He pulled up his sleeve and pointed out where we should be aiming...on Daddy. Kristy of course got in first time and I saw the best blood return I have seen....well ever probably!
Clinic was busy plus I think they forgot I was was there, things seemed to move suspiciously fast when I reminded them I had an 11 o'clock appt. and it was now 12.30 and I was still in reception no labs drawn.
So after 2hrs waiting in reception labs were drawn there, we got a room and started 2hrs of IV fluids before any meds.... I was looking forward to the doctors visit as I have a few questions but instead had 3 minutes with a nurse practitioner which wasn't very informative. So my actual meds were put in IV in about 20 minutes and then we were done. Kristy had to remind them we had no meeting or tests set up at all. So we then waited again for someone to set some appts up....do I sound just a little peeved?
So after 5.25 hours we got to leave. Oh yeah, numbers were fine, Creatinine came down again a little from 2.19 to 2.12.
Nausea should get a bit better as I'll not be getting any meds for a little while. One week off then tests, well the tests actually start this Thursday with various blood tests on 4,8 and 11th. Bone Marrow biopsy on the 17th, then some more tests I have no dates for at the moment.
It looks like the 2 days of high dose chemo (Melphalan) start on the 6th of December as long as I pass all my tests then transplant on the 9th.
So phase 2 is starting with any luck. I am happy things are progressing, I am quite interested in how sick I'm going to feel and be. How I manage to deal with it (how many times will "pain in the arse" be used when Kristy refers to me) and of course something that weighs on my mind, how it will be balancing time with kids and not getting any infections.
Also I've been asking questions that while wanting answers have realized no accurate answers are available yet. Like how much kidney function will I have when all this is done and what kind of energy level can I expect. Again, I think I'll be falling back on my tried and tested "hope for the best and prepare for less than that" . We'll see.

10.25.10 2nd chemo of 4th Session

Okay so the Creatinine didn't come down much, 2.35 to 2.24 and I drank more water than I thought humanly possible. Basically the problem is my kidneys cannot take 25mg of Revlimid and clear it, so it is building up and causing all my other numbers to drop when they shouldn't be. So starting today I'm back down to 10mg and getting a liter of fluid IV everyday to flush out my kidneys and to generally keep enough fluid passing through as I am finding it hard to keep up orally. I'm a little disappointed to be dropping to 10mg but 25 is just not possible given my kidney function.
Nothing else too exciting, 4 hr visit which included 2hr of IV fluid, not too bad I guess. Kristy got my IV first time and we got a quick visit from Dr McGirk which was fun so all is going pretty well.

10.22.10 1st Day of Session 4.

So here we are again on the wonderful ride that is cancer! My appt was at 10am and it's 12 now and we're still in the waiting room....Kristy tried to start my IV this morning and stopped after 3 tries. Sophie was very sweet and held me while Kristy tried to put the IV's in.

Sophie looking after her Dad

I have had my blood taken...and the prize goes to Mary, it took 2 more tries. Still no PICC line needed!
Well the damn Creatinine is 2.35! I'll ask for IV fluids today as I know I'm not drinking enough because of constant nausea, even plain water is tasting bad these days. All the other lab results were fine, so we'll wait and see what the doc says. Blood pressure was high today which is weird as I checked it at home 4-5 days ago and it was pretty much normal.
Dr Ganguly dropped by and said he wanted to lower the Revlimid dose because of the Creatinine level being so high. I asked if I could stay on the same 25mg and get IV fluids to help my kidneys, he agreed. I'm getting some stronger anti-nausea meds as well so I can drink more at home and hopefully bring down the Creatinine again. Somehow I think IV fluid is the way to go.
It was interesting in the waiting room today, it was packed and we got the last two seats. People were talking and sharing their cancer experiences. A really nice bunch of people and very varied stories and stages happening right there, right now...kind of crazy. It felt kind of like a support group, which was funny - one lady even came over and gave Kristy a hug.  It was all a little surreal.
Well I got my wish, Dr Ganguly has written orders for me to get a litre of IV fluid before each of my three remaining chemo treatments. It can't hurt and I can snooze for the 2hrs it takes if I so wish, tough life huh!
We met Beth my Transplant coordinator. She gave me a huge folder about the "do's and don'ts" and all the tests and meetings I'll be having before I'm allowed/can go ahead with the transplant. Beth is really nice as are all the staff. I can't say enough goods things about the people there.
All going well I will post some provisional dates soon for all the fun stuff I'll be getting up to.
So 1L of IV fluids, Dex, Zofran and Velcade later plus meetings with Dr Ganguly and Beth we get to go home, a grand total of 6 hours later!
Back in on Monday or course and I'm accepting bets on the Creatinine numbers, I'm guessing on 1.82. Are you feeling lucky?

Last day of 3rd session 10.11.10.

Kristy got an IV in 2nd try. She says in 6.5 years she has never had a patient with such thick skin.....what can I say, thickening my skin has been a hobby for years now.
Labs were taken after an hour of waiting, they were busy again at the clinic. All counts came back fine, Creatinine which I thought would be trending lower went up again to 1.9. I think no matter how much I hope and drink it isn't going to budge at the moment, hopefully after transplant.
No doctor visit today so just Dexamethasone Valcade and Zofran as normal. And so ends session 3.
Generally I'd say nausea is constant and a little higher, eating is harder as nothing tastes good...but as usual I manage, my weight is still a solid 167lbs and hasn't really changed. Fatigue a little higher not too bad though. I don't get the steroid high anymore, if I had to guess I'd say it's because of the higher dose of Revlimid.
So just to show you how boring our visits are here are some pics of us being bored..

This is my 'still fighting' pose.

checking lab results.

my chemo face.

Friday 10.8.10

So here I am 12noon giving you a minute by minute a/c of my visit. Kristy had to work today and therefore had to put my IV in this morning...I nearly made her late. I guess I'm getting harder to stick, third time was a charm though.  According to her my veins are getting "ropey" - can't decide if I like that term or not.
I'm feeling the extra 15mg of Revlimid so hopefully it is doing its job. As always I'm interested to see the Creatinine numbers.
I got on my bike yesterday for the first time in a while. I had been going no higher than HR 130 before needing to get off the bike to stop myself from getting pretty dizzy, my red blood cells weren't carrying enough oxygen - however yesterday 145 was fine for 5-10 minutes! So that is great and a sure sign my body is getting back to a more normal fitness.
Blood taken and all the numbers are good, my RBC count is slightly higher which would a/c for me being able to workout at a higher HR, but with chemo it would be expected to go down.
John came to my appointment with me and we had a bet on the Creatinine, I thought 1.77 (i guess i must be feeling lucky), it came back 1.82 which is down from 1.94. I have a feeling the 25mg of Revlimid is going to knock my Creatinine down a bit more, because of the higher dose I feel more tired and nauseated and my taste buds are going a little crazier than before. Now very little tastes good. However if it does its job the inconvenience will be worth it. Saw the doc he seemed pretty happy with my progress. We were in and out in 2hrs 45mins!
I got another workout in before Sarah left (she was babysitting the kids) and am still able to hit 145 for over 5 mins! So all is good at the moment. I'm trying to workout everyday to see if it helps.

Kristy & I going out to dinner.

John and I doing some art...cause that's what we do.

Daddy eating James' toes!

Photo with Soph.

James and I trying on our Halloween outfits.

Here are some recent pics to liven up this post..

10.4.10

Unevenful day at the clinic, an hour wait before they took blood but in and out in 3hrs as I didn't need IV fluids. We met Abby the very nice nurse practitioner who explained that we were probably looking at 4 sessions of chemo, then harvest of stem cells, then high dose chemo, then transplant and so on. I'll put some more info and dates to this another time. So all is going okay at the moment.
I think they may need to ease back on the steroids...

but Kristy seems to like it! However cycling up hills may be an issue.
The higher dose of Revlimid seems to be fine at the moment, I take it just before bed so miss out on most of the neuropathy which is nice (it is still going away by morning).
Kristy is still putting in my IV before I go to clinic but has said she is noticing my veins are changing with chemo, they will get harder and so more difficult to get a needle into, but she is still getting in first time at the moment!
Back in on Friday for 2nd last chemo of 3rd session. Not long to go now till I get rid of all this annoying hair!

3rd Cycle of Chemo 10.1.10

So Cycle 3 is underway!  We met with Dr. Aljitawi a little earlier and he was very encouraged by my response rate so far.  The type of abnormal proteins I'm producing (free kappa light chains) have been reduced by 90%, so he is considering this a "good, partial remission" so far.  The goal is to get me to a complete remission, with zero free kappa light chains before transplant...which will give me a better prognosis after transplant.  But even if the kappa light chains do not go down any further (although they are predicting that they will continue to decline), I will still have a pretty good prognosis after transplant.  So all in all the visit with the doctor today went well.

My creatinine went up to 1.97, which I predicted based on how I've been feeling.  So now I'm getting 1 liter of IV fluids and hope tomorrow I have my 'roid' high with the IV fluid and steroid combo!
When my blood tests came back, I was told because of the levels I would need a blood transfusion. Kristy looked at the results and lots of values were down and it didn't make sense. She thought as the nurse took blood for the test the first tube she filled she may not have 'wasted' i.e. the saline in my IV was not discarded before putting the blood in to test. So...she asked for the test to done again...and eagle eye Kristy was right! All blood values were good and no transfusion was needed - thank you Kristy!

Because my platelets and white blood counts are normal they have raised my Revlimid dose from 10 to 25mg. They wanted to give me a full dose (which is 25mg) if possible and see how I tolerate it, the side effects so far from 10mg have been nausea, fatigue and neuropathy in my feet (numbness) which so far has gone away the next day or so but I have been promised it will 'come to stay' with more Revlimid...we'll see.

So all in all a good visit with encouraging progress. 5.5 hours is a long time to be at clinic, though.

Monday 9.20.10 (20.9.10 uk)

Okay so we were sitting waiting in reception for so long this morning (over an hour) that I had a chance to try the Cafe and it was very nice. I had my first coffee in about 3 weeks and I swear it's better than steroids and chemo put together!!! Feeling great!!!

getting my steroids & chemo

My creatinine is 1.75 which is fine. We saw Dr. McGuirk this morning and among other things he said he'd like to see that value come down a bit more with more chemo sessions. He also said that my next appointment won't be until October 1st (the best news of the day, as it means we have a 10 day break from this place!!) when I'll start my 3rd cycle and have labs drawn.  The labs they'll check will include a measure of my free kappa light chains, which is the type of abnormal proteins I have from MM.  This value has to come down to zero before they think I'm in remission and will do another bone marrow biopsy.  This value is directly correlated to the paraproteins (121 prior to treatment, down to 6) they checked a couple of weeks ago, so he expects to see a good response.

a very neat IV by kristy

My white blood cell count is back up to 5.7, which is a normal level so therefore my immune system is still functioning well.  We think the transient dip on Friday was caused by Aredia, which was the IV treatment I got for bone protection.
So all in all a good visit though a slow one at 3 hours.
Okay turns out I'm going in next Friday (they called and added an extra visit) just for the  blood test to show free kappa light chains, I guess it takes a few days to get results and they want everything back by the Oct 1st visit. So we should get a better picture of how I'm responding by the 1st.  We'll keep you all posted.

Friday Sept 17th 2010

John picked me up and we went in for some 11 o'clock chemo. Kristy had again started my IV with one poke - thank you.
When the blood test came back the creatinine had stayed at 1.69 which is great. My white blood cell count is going down which is to be expected. It is 3.4 now and will be going down further during these low dose chemo sessions (normal is 5-10). I need to start taking more precautions as I am now more susceptible to infection. No hugging kissing, being around crowds, shopping anywhere I can pick up a cold or flu. Also my nurse recommended restricting my contact with the kids which is kind of impossible so I'm double checking with my doctor what exactly I can and can't do.

Good News 9.13.10

Well today Kristy started my IV at home, she got it first time of course and I couldn't even feel it! Sophie was very interested in this and watched the whole thing. Got in to KU at 11 but things were running slow so they didn't take blood for about an hour. Results were good the creatinine came down to 1.68 which is my lowest reading so far, very happy about that and surprised. I also had a visit from Dr Aljitawi, he introduced himself and said he knew Kristy and that she was a very good nurse (I was getting that impression lately). He was able to tell me I was reacting well to the chemo after just one session which is encouraging. My urine paraproteins (the "myeloma marker" they're looking at) had come down from 121 to 6....which can't be bad! At least we know the chemo is having a good effect.
So no need for IV fluids today! However Aljitawi mentioned he wanted to give me a medication to help reverse the bone damage/lesions caused by myeloma. The drug is Aredia and is given IV over 4 hours.... If my creatinine was 2.38 like on Friday they'd have to do it over 6! So I guess I should consider myself lucky. So, as seems to happen on a regular basis, I'm here for the best part of a day (7.5 hrs). It's all good though, I need my bones and am very happy to be looking after them.

Was on the bike for 30 mins again this morning. It is so funny to me that I can keep a HR of 130 fine, 140 hurts a bit and 150 is beyond me. My hemoglobin is down to 9.1 from a normal of 13 to 17ish, and so cannot carry the much needed oxygen around my body....do you think now is a good time to ask for some EPO?
So here I am for another 2.5 hrs, I just might order up another hot blanket, flatten out my lazyboy and have a snooze...
Good numbers today...makes me happy.

Starting 2nd session of Chemo Sept 10, 2010.

Kristy came with me this morning and ended up putting my IV in. We actually talked about having a PICC line put in which is a permanent IV so I don't have to get stuck numerous times each time I need an IV. There are issues with PICC lines though, it can cause clots and also get infected. So I put a 3rd option on the table, that they are happy to go with...which is Kristy. I said how about if before we leave home where it's nice and warm she can put the IV in and it's done. They were cool with that and if it starts taking more than one stick as the chemo takes a toll on my veins we can look at the PICC option again.
So the pharmacist came in an chatted for a while about ways to get rid of the nausea and any other questions I had - nice guy. When my labs came back it wasn't a surprise to see my creatinine had gone up to 2.38 which is my highest reading so far and a little concerning if it's going to be a trend. So I got my 2nd litre of IV fluids this week and I'll be drinking and eating as well as my brain will allow until Monday and my next blood test and see if I can make any difference at all, which I kind of doubt. I am not alone in thinking myeloma is the problem and it is still causing disease in my kidneys which any amount of water cannot reverse (though later in the treatment they can regain function) . One of my chemo drugs Revlimid can only be used up to a creatinine value of 2.5 so that is an issue and of course hanging on to my kidneys is always a shadow in the back of my mind.

So I got started on the 2nd session of steroids and chemo IV and also started taking my 1st of 14 days of Revlimid orally. We'll see how much of a steroid 'high' I get tomorrow, I've decided if I have insomnia I'm off to IHOP for breakfast at 4.30 - 5.30 if anyone wants to join me...

Wednesday 9.8.10

Had a blood test yesterday then went down to the Plaza for some coffee and magazines. BMT dept. gave me a call later to say my Creatinine had gone up to 2.17 (from 1.85) so I needed some IV fluids...if possible. So, got fluids all went fine. Last night however I didn't feel great I was fatigued and nauseated with a low grade fever which was a bit of a bugger! I feel a lot better today but I swear I could sleep if I laid on the ground right now!
The nausea is still hanging around on Thursday, so for the past 2-3 days fatigue and nausea have slowed me down. Docs appt and chemo tomorrow.

Week off 9.3.10

This is a week off from chemo, not from coming in here to the hospital. I had a doctors visit at 1:15 and I'm still here at 4:30 and plan to stay until 5:45. I'm hooked up to a saline trip, I'm getting a litre of fluids because of my creatinine level. Which is actually 1.85, so not too bad. I happened to mention how good I felt after the last litre I had so the doctor recommended another. It's kind of a test, if tomorrow I feel 'fit as a fiddle' (which is how I felt last time) I'll be pushing for IV fluids every time I come in. If tomorrow I feel as I did today which was a little blaa I will not be hanging around for fluids on future visits.
I have the added fun of being a hard stick, so getting an IV going today took 6 goes and one wife to get it done (yes, Kristy had to start my IV again). Not the most fun I've had lately. So the bottom line is I'm getting fluid and Kristy will be back in a couple of hours to pick me up.
I would say I'm not a bad patient, I can't say I'm that good either. Especially when it comes to listening to Kristy, she has been telling me for some time now that my left flank pain is probably due to the hematoma caused by the kidney biopsy. Of course when todays doc concurred... I concurred too. And in my head it is much nicer to think of good pain, i.e. nerve endings healing compared to damaged kidneys getting worse. Yet again I have been surprised by how long my day turned out to be, an hour visit became 4.5hrs.