Slight change in the game plan

Ok... so I believe with my last post I left off at the end of collection day two.  Thursday started out the same as the last two... went right down for collection.  The collections were starting to drag by this point.  Luckily I had some yarn and my knitting needles to keep me occupied (I actually made a hat in 2 days, which is super fast for me).  I think my poor mom must have read at least 3 books by the time we went home on Friday, lol.  Anyway, after collection I had a meeting with my transplant coordinator Colleen and Dr McCarthy to go over a few more details of the process.  I just have to say, that I love my Dr... he is so incredibly intelligent and down to earth at the same time.  And he likes to talk... a lot.  We met with him for over an hour so he could hit some of the high points of the process.  We discussed what would happen if they didn't collect enough stem cells by the end of Friday (bone marrow harvest or re-mobilization), and then went over my chemo schedule.  So, I was scheduled to return to Roswell on April 7th for blood work, pre admission testing (final approval for the SCT) and to have another central line placed in my neck (wo-hoo!).  Then I would be admitted on the 8th to start chemo.  And here's how that will work... day one I start a 26 hour infusion of Etoposide.  After that I will have 4 days of Cytoxan, and then finally around a two hour infusion of Carmusine   Then I will have 2 days of rest before I get my stem cells back.  That day was scheduled for April 16 (my "re-birthday")... which is called day 0.  The stem cells get unthawed and then given back to me just like I was getting a blood transfusion.  I was also told that I'd start Neupogen shots again on day 5, and that I'd most likely need 2-4 transfusions for red blood cells and platelets (donated blood hard at work!).  I'll stay on my full dosage of Lovenox until my platelets drop under 50, and then I'll go to a lower dosage.  Speaking of Lovenox... while we were at the family meeting and my mom mentioned what a mess my stomach was from all the injections, Dr McCarthy called one of the nurses in to place an Insuflon port into my stomach (one of the other patients at Hope Lodge had told me about them).  Where has this thing been since December?!  It's sooo much easier, and just gets replaced once a week (and I can do it myself).

After the nitty gritty of the actual process was discussed, we got to the restriction part.  For example... the house must be stupidly clean (it's time for spring cleaning though right?), I am not to clean the fish tank, clean up after the dogs, change diapers, go out in crowds without a mask, be around smoke of any kind (campfires, second or third hand smoke), garden at all (which is killing me!), no fresh or dried flowers, can't be in the room when someone is dusting or vacuuming, touch any dirty dishes or dirty laundry... you get the idea.  The time frame for most things is between 3-6 months, though I'm more restricted the first 2 weeks after leaving the hospital.  For example... no driving, can't be alone for more than 20 minutes at a time.  Ummm yeah.  This is gonna be a blast!  After the meeting with the Dr, I got a tour of 5 East at Roswell, which is where they do the transplant.  Then I went back to the BMT clinic for my afternoon shot of Mozobil.  They had gotten my counts back from the morning, and I was up to 1.57... so I did better than the previous day.  I was given an extra Neupogen shot that afternoon since Friday was the last day they could collect.

Friday morning (after my shot) we had the caregiver meeting, which was with a few other families.  It was basically a power point presentation about what to expect and what the role of the caregiver is.  We got another huge binder of info to read, but for the most part, it was just a summary of everything we had already learned that week.  As soon as that was over I went down for collection.  That one seemed like it took the longest because as soon as I was finished I'd get to go home.  I went back to the BMT clinic when I was done to have my central line taken out.  I had to hang out for a little bit because my blood pressure dropped and my neck wanted to bleed a bit (at least it didn't hurt to have it taken out).  I was told that I'd prob have to wait until Monday (since I was on apheresis until 3:30) to get my counts back and they'd call me as soon as they knew what they were.  So mom and I were off to Hope Lodge to grab our stuff, and then we were headed home!  We were about an hour and a half away when I noticed I had a missed call and voice mail.... it was Dr McCarthy calling to let me know that they didn't get enough (only up to 1.8) and that we'd have to go to plan B.  He said to take the weekend to think it over, and get back to them on Monday.  Bummer.  But at least I was on my way home to Chad and Dagen!  I couldn't wait to squish my baby!!  :)

I knew immediately that I wanted to do the bone marrow harvest... it won't be pleasant, but I'll be under general anesthesia, and I know they'll get what they need.  If I were to re-mobilize and collect with apheresis again, I'd have to go through shots all over again, line placement, and it would set everything back a few weeks.  No thanks, I'd just like to get this done and over with please.  I called Colleen yesterday and after some monkeying around she got everything scheduled for me.  Basically I'll still be going up to Buffalo on the 7th, and my bone marrow harvest will be on the 8th.  I'll have my pre-admittance appointment, blood work and line placement on the 9th, and be admitted on the 10th to start chemo.  My day 0 will now be on Sat. April 18th (my awesome Dr said they'd do it on Sat... normally it's a Mon-Fri kind of thing).  Anesthesia is going to do a consult over the phone on Thursday (which is awesome!), and I'll be back at the Hope Lodge on the 7th with my mom.  Just going to soak up as much of my little man and family as I can while I'm home... have a great Easter everyone!!  :)  xo

Adventures at Roswell

Figured I'd post now, before I forget everything that I've done up to this point.  So... came up to Buffalo on Thursday with mom and checked into the Hope Lodge.  It's a big old Victorian house that was built in the 1800s and is run by the American Cancer Society, located a few blocks away from Roswell.  Didn't do much on Thursday night (I don't think... I'm already forgetting apparently, LOL).  Friday I had to be there at 7am for blood work (which didn't get drawn until over an hour later).  I was supposed to get my Neupogen shot after that and be monitored for an hour (to make sure I didn't have a reaction) but since I was behind schedule I was sent off for my physical therapy assessment.  Holy crap, am I out of shape!  My legs were sore for 2 days after some pretty basic exercises, but since I really don't have any deficiencies I passed it pretty easily.  Following PT was my much anticipated dental exam (because there would be nothing worse than a crappy report given my profession) which consisted of a panoramic x-ray, two bitewings and and exam by the Dr.  And yes, I passed, LOL.  Following that I had a bone density scan (which was a first for me).  Just had to lay on a table and have some pictures snapped... piece of cake.  So at around 11:30 I went back to the BMT clinic for my Neupogen shot.  Which is actually two shots (in the arm) because the dosage is too large to fit in one syringe.  Awesome.  I had Neupogen in the hospital over Christmas, so they didn't make me wait very long afterward.  Since I was done for the day and it was pretty early, mom and I decided to go to a movie.  We both wanted to see Insurgent, but I twisted her arm and made her see it in IMAX 3D (totally worth it!!).  Anyway, did some shopping, went out to dinner and back to the house early cause we were both tired and there's a 10:00 curfew... no bar hopping for us, LOL.  Had to be back at Roswell on Sat and Sun at 8am for more Neupogen.  We basically spent the weekend driving around the area, getting some groceries and killing time.  

Monday was a blast... starting with my shots at 7:30.  On the plus side, since I was having my central line put in the next day, I had to temporarily stop my Lovenox injections... wo-hoo!!  At 8:00 I had my pulmonary function test... not my favorite thing, but I was told I did well.  I only had one section of it that made me a bit lightheaded.  After that, I had an echocardiogram of my heart done, and that went well too.  The tech was an absolute riot.  I finished that around 10:30, and then mom and I went back to the house, hung out for a little bit and then drove out to Hamburg cause there was a yarn shop I wanted to check out.  Got a quick bite to eat at a little diner and headed back to Roswell for my afternoon shot of Mozibil (to help push the stem cells out into my blood).  That one went in my stomach (which is destroyed from all the Lovenox injections) and I had to wait for half an hour before I could come back to the house.  Tried to go to bed early, but I've been sleeping like crap, so it didn't help much.  Had to be back 7am for my shots and my central line placement.  I was not looking forward to that at all... with all the issues I've had with my PICC line, I was a little nervous.  They gave me a Xanax to take due to my anxiety and after waiting around for a little bit it was time to head in.  It went pretty quickly, but it was not the most pleasant thing I've had done this week.  They put it in on the right side by my collarbone, and it has two lumens coming out of it that they use for collecting my stem cells.  It's held in with a stitch and covered with a dressing.  I'll have it removed before I go home.  Much to my delight, that blasted PICC line was removed from my arm (if I knew how easy it was to take it out, I would have done it my damn self a month ago!!).  The skin on my arm is a mess though.  The nurse was very surprised at how irritated everything is.  I have blisters and a lot of raw, red skin from the plastic piece that held the line in place.  Anyway... after the line was placed it was off to the apheresis department to get hooked up to the collection unit.  It's pretty amazing what they can do these days.  I was hooked up to it for about 4 hours (did some sleeping) and was told I'd find out how much they collected the next day.  I had to hang around for my afternoon shot and then we just came back to the house.  All that crap makes for a very long day, and not sleeping much doesn't help.  

So... we're caught up to today.  Went in at 7 for my shots, and then went straight down to get hooked up for collection.  And then I got the news... they had only collected .64 (volume of stem cells) from me on the first day.  I need to be at a 2 by Friday or all sorts of crap is going to be screwed up.  Usually the first day of collection is the best.  Joy.  Anyway, I was done with today's collection around 12:45 (had to hang out for a bit cause my blood pressure was low) and then we were going to just walk around and check things out.  Or not... hello nausea out of nowhere.  So, back to the clinic I went to get some Zofran (luckily it worked, most of the time it doesn't).  I had appointments scheduled with social work and the dietician for later that afternoon but they moved them up a little bit so I could get them done.  I had to be evaluated by social work (I think I passed, LOL) and got a whole crapload of material to read.  There are also a lot of restrictions with my diet during and after transplant that the dietician had to go over with my mom and I.  Luckily I already follow most of them, so hopefully it won't be too big of an adjustment.  After we were done with that we just walked around until it was time for another shot.  And then I got my results from this morning... a whopping .38.  So yep, after two days I'm at 1.02.  Not looking too good.  I see the doctor tomorrow, so I'll get more info then.  But at least I'm done with tests.  

All in all, the week hasn't been too bad.  I've met some really great people, both staying here at Hope Lodge and at Roswell.  I am amazed at some of the horrible shit these people have gone through (and I can't even imagine going through it), and I'm in awe of the strength they and their families have.  It really makes me realize how lucky I am.  Crossing my fingers for a good collection tomorrow (gonna have a chat with my stem cells tonight) missing my family and my (now 10 month old!!) baby.  Thanks again for all the well wishes, positive thoughts and prayers.  XO

Consult #2

   Alrighty... so I went to Roswell yesterday to see Dr McCarthy (who is awesome I must say).  After reviewing my most recent PET scan we decided to go ahead with the transplant even though I'm not in complete remission.  And I'm ok with that.  I have a couple of weeks before I start the prep for stem cell collection, which is nice since I'm feeling pretty much back to normal.

   So here's how it will go for the most part... I'll start on March 20th with Neupogen injections to help stimulate my bone marrow to produce stem cells (Yay! more shots... as if the Lovenox twice a day isn't enough!  lol).  I will get these shots for 5 days in a row.  The last 2 days I will get a second injection of a drug called Mozibil which will help push out the stem cells into my blood so they are easier to collect.  On the fifth day they will start collecting my stem cells.  They basically hook me up to a machine that will pull out all my blood, run it through a centrifuge to pull out the stem cells, and then pump my blood back into me.  It works like dialysis.  Oh yeah, and they are going to take this blasted PICC line out of my arm and put a central line in my chest for the procedure.  I've been told that each day will take 4-5 hours, and that they usually do at least 2 days, but up to four (they need a minimum of 2 million cells).  The freeze everything until I'm ready for them to be re-introduced to my bloodstream.  Then I've got another meeting with my doctor, and an informational group meeting for the family that will talk about the process and aftercare for me.  Oh yeah, and they are going to run a stupid amount of blood work and tests on me while I'm there.  I have to get a dental exam, an echocardiogram, a pulmonary function test, a bone density scan and I'm sure there's something else I'm forgetting.  I had chest x-rays, an EKG, and blood work done yesterday.  And I mean blood work.  The nurse came in with a bottle of water and 3 cups of juice before she started to take my blood... she looked at me and said, drink up... I have to take a lot, don't want you passing out.  And she wasn't kidding.  She came back in with 16 tubes to fill up!

   About 2 weeks after collection, I'll be admitted to the hospital the night before treatment.  Then they'll start the high dose chemo (I'm not getting BEAM which is the more common treatment) that will take about 1 week I believe.  The regimen I'll be getting is called CBV.  After I'm done with the chemo, they'll give me back all my stem cells and I'll start the very slow (and very not fun sounding) recovery process.  They've told me to expect to be in the hospital for about a month.  After they discharge me, I have to stay in the transplant house by the hospital until they release me (up to 2 weeks but no longer).  Then I'll be on a maintenance drug called Brentuximab Vedotin after treatment (along with antibiotics, antifungals, antivirals and steroids).  It works kind of like Tamoxifen for breast cancer patients.  So, needless to say... I'm not looking forward to this.  But I'm ready to get it done and over with so I can try to return to some sense of normalcy.  :)