The bad news, and the bad news

Can't believe it's been almost 3 months since I updated this!  Let me get everyone up to speed... I'd been doing my treatments (Brentuximab) every 3 weeks, and had gone back to work (part-time) in the beginning of September.  I went back up to Roswell for my 6 month post-transplant checkup a couple of weeks ago.  They started re-vaccinating me (which sucks by the way), and did some blood work (broke my record with 23 vials!).  We were all set to continue the Brent (I'd had 6 out of 16 treatments) since I wasn't having and trouble with neuropathy, and had talked about doing a 6 month post transplant PET scan.  I was actually pushing for this because I'd had a few "twinges" in the same area of my back that had bothered me in the past.  I also made an appointment to have a bone density scan done (and more vaccinations) in December up at Roswell.  Fast forward one week... I was at work when my feet went completely numb.  It didn't last long, but I was going down a flight of stairs at the time, and almost fell.  After that they were just tingling, and that continued on an off all week.  I went to Corning for my infusion on my birthday, but we decided not to do it because I was starting to get some neuropathy.  They did more blood work (only 8 vials this time), and after talking with the nurse practitioner and telling her what was discussed when I went to Roswell, we scheduled a PET scan for this past Monday.  So Monday morning I went up to RPH for my 7am (too early, lol) appointment.  I had an appointment with my doctor to go everything yesterday afternoon.

So... here we are.  The bad news is, that there's no good news.  The other bad news, is that the transplant failed, and my cancer has returned... again.  So, now I just need to figure out what I want to do, going forward.  My doctor is recommending that I start a drug called Nivolumab... or for those of you that watch TV, it's a drug called Opdivo (yes, there's a freaking commercial for it).  It's approved to treat lung cancer patients, and they've been seeing good results with Hodgkins.  It's not a chemotherapy, it's a PD-1 inhibitor, so it's supposed to strengthen my T cells to help my immune system fight the cancer.  It would be a one hour infusion, every two weeks for an undetermined amount of time.  The only other option (unless I try to get into a clinical trial) would be an allogenic stem cell transplant (from a donor).  I would have to be damn near on my death bed to go through with one of those... so at this point it's not really an option, because I would refuse.  I told my doctor that I'd like a break from pumping harmful crap into my body, so I'm taking a month off from treatment.  In the meantime, I'll be researching Nivo, to decide if I want to do it... and I'll also be researching some more natural ways to strengthen my immune system to fight this naturally.  Starting today, I'll be making some pretty drastic changes to my diet to help my immune system get stronger, and to help my body detox.  I think it will be interesting to see what the lack of caffeine and sugar does to me.  Look out!  LOL

So yes, this whole thing sucks... but it could be much worse.  The spot is small, so I don't have to rush into anything.  I'm just trying not to be bitter about having the transplant done for nothing... it's ruined my chances to have another baby, and it didn't work.  But, there's nothing I can do about that now I guess... just have to stay positive and get ready to kick some ass.  XOXO

Time for an update!

I've been hearing from multiple people that I need to update this (sorry I'm such a procrastinator).  So here I am, at day +105.  I made it past day 100 without any complications (wo-hoo!).  So now I can get outside and play in the dirt, LOL.  How did I celebrate day +100?  I drove myself down to Wendy's and got a Coke... with ICE... from a Fountain Machine!  Bwa haa haaa.  Seriously though... soda is my weakness, and sometimes it's nice to have one out of those bacteria filled machines.  So there, LOL.  And that evening when Chad got home, I went outside and weeded out one of my flower beds (I did the easy one first, the other one is still a nightmare!).  But it was nice to just be normal for a little while (as normal as I ever am anyway, LOL).

Anyway... since my last post, I've had my power port put back in (which is awesome cause Dagen apparently thinks it's a handle for him to grab onto... feels fantastic, LOL), I had a CT scan, and I've had three treatments with Brentuximab.  The CT scan apparently looks exactly the same as the one I had in Feb, which is good.  No new activity (Yay!).  There was a small area that is believed to be either inflammation/scar tissue/calcification... but I've been told it's nothing to worry about.  I'm going to continue with these treatments every 3 weeks until I start to have issues with side effects, or until I get them all done.  My Dr said that since my last CT "looked so good" they aren't planning on scanning me again until I finish the Brentuximab (unless I start to have symptoms again or my blood work is off).  So far this treatment hasn't been too bad... experienced nausea and vomiting after the first dose, so I got a premed of Aloxi (for nausea) before my second dose.  That helped for a couple of days, and then I had the nausea and vomiting again.  So since I had treatment again 2 days ago (and got the Aloxi again), I'm guessing the nausea will start getting bad again tomorrow evening.  I still get tired easily, but the fatigue level with this chemo is much less than previous treatments that I've had.

So... I'm still trucking along... spending time with family and friends when I can... getting mentally prepared to go back to work in a month (I've essentially been a stay at home mom since Dec... with a few extra challenges here and there).  Hoping that the side effects don't get worse (from everything I've been reading with the Brentuximab the side effects will start to compile as I have more of it).  And hoping that these hot flashes (treatment made me pre-menopausal) are temporary and not permanent.  Cause they suck!  LOL  On a positive note, my hair is growing back (again!).  Wo-hoo!

Day +46, where does the time go...

Has it really been almost a month since I updated this?  Wow.  Can't believe I'm up to day +46... can't believe I had to look at a calendar yesterday to count what day I was on.  I kinda thought I'd pay more attention to it, but I guess it has been a busy few weeks.  So, for those that aren't already aware, I'm home, LOL.  I was only at Hope Lodge for about 5 days, which seemed to surprise a few people.  I got to come home on day +23, which was fabulous.  I spent some much needed time with my family and worked on getting used to being home again (and having mom as my caregiver at home, lol).  I'm feeling pretty good overall.  Still dealing with some nausea and I get tired easily, but it hasn't been as bad as I anticipated.  The meds haven't been too bad to deal with either.  I'm on an antiviral, antibiotic (that I only have to take on weekends), vitamin supplements and nausea meds as needed.  It works out to be 8-10 pills a day, 12-14 on weekends.  Since I had an auto transplant and not an allo (donor) I don't have to worry about GvHD (graft vs. host disease), and I don't have nearly as many meds or restrictions as an allo would.  I saw my oncologist in Corning after I'd been home for around two weeks and he was very pleased with my blood work and progress so far.  I went in again today for my "chemo teach" to learn about the Brentuximab I'll be getting as maintenance chemo for the next year.  I'll have infusions done every 3 weeks for a total of 16 treatments if my body can handle it.  The side effect I'm worried about is peripheral neuropathy (numbness and tingling in hands and feet) since I work with sharp things in people's mouths being able to use my hands properly is a good thing.  The other side effect I learned about that I have to watch for is lung problems... especially due to the previous chemo drugs I've had that are toxic to the lungs (Bleomycin and Carmustine).  Oh yeah, and extreme sensitivity to the sun (like I'm not sensitive already, lol) and rashes.  The rest are pretty standard for chemo... nausea, fatigue, low blood counts, etc.  Supposedly this one isn't supposed to be as rough as the previous chemotherapy drugs that I've had, and I'm hoping that's true.  As of right now the game plan is a consult on Friday to have another port put in (yay.), then blood work and another CT scan on the 16th, and I start treatment on the 18th.  So sometime in the next two weeks I'll get the port... there's no way in hell I was going to do another PICC line, so that's my alternative.  Oh well.  Overall, I've been very pleased with treatment and all the doctors, nurses and staff that I've dealt with so far.  I don't have to go back to Roswell again until October, which is nice.  Once again I'd like to thank everyone that has had me in their thoughts and prayers over the course of this journey.  Thank you for all the well wishes, messages, cards, calls and gifts.  Everything is very much appreciated.  I received some very nice gifts and cards while I was at Roswell (and since I've returned), and have the "Hornby health fairy" looking out for me, so I'm in pretty good shape.  I'm just going to enjoy my time before treatment starts again, and I'll be sure to keep those that are interested updated on my progress.  One thing I do have to mention though, is the loss of someone I met on my adventures at Roswell.  I didn't know him well, but spent some time getting to know his parents (who are incredibly sweet people) around the kitchen table at Hope Lodge.  Cancer is a horrible, unfair thing that no one should have to suffer through, especially at the young age of 24.  Justin fought hard, and it's not fair that he had to deal with any of it.  May 22 his suffering ended, and the fact that he had to suffer at all is heartbreaking.  He was a very sweet person that made a big impact on me in a very short period of time.  Lessons learned... don't take anything or anyone for granted.  Life is too short. XO

Day +19 - I'm free! Kind of...

Alrighty.... Day +19, discharged from Roswell this morning, yay!  So I'm mostly free... I'm back staying at the Hope Lodge again because I am required to stay local with my caregiver (mom) until my Dr releases me.  Could be up to 2 more weeks but if things keep going the way they have been I should be looking at the beginning of next week (fingers crossed!).  Most of the days since my last post on day +10 were pretty uneventful.   I did have one fun night about a week ago were about 20 minutes after taking my nausea cocktail I started experiencing some chest pain.  I ended up getting an EKG, being put on a cardiac monitor, and was given a nitro tab (which tastes horrible by the way).  Apparently the EKG showed prolonged QT's, which can be caused my most of the nausea meds I was on.  So we ended up having to scratch my meds and switch to Ativan and Compazine for nausea.  So yeah, that was a fun night.  Anyway, getting ready for discharge involved more than I'd expected.  I had to be re-evaluated by physical therapy and I had to meet with the dietician to go over my outpatient diet (which is a whole bunch of fun, but could be worse I guess).  I also had to talk to someone from the pharmacy to go over all my meds (the pill box I have is insane) because I'll be on antiviral, antibiotic, vitamin supplements, nausea meds and a bunch of other stuff as needed for a very long time.  On the plus side, I had another ultrasound done of my arm (where I initially had a blood clot around my picc line) and there is no visible clot... so no more evil Lovenox!  Wo-hoo!!  I also had to have another EKG done to make sure things looked good.  Oh and I forgot, I ended up with an infection somehow so I'd been on IV antibiotics in the hospital for the last 12 days or so... and I had to have another echo done of my heart.  Apparently the type of infection I had likes to set up shop in the heart valves.  Luckily everything looked good.  So here we are.... I have to go back in to clinic tomorrow morning and Saturday morning for blood work and meetings with the nurses.  Then on Monday I meet with my Dr (after more blood work) and find out when I can go home.  Once I'm home I'll be going back to my regular oncologist at Guthrie after a week for blood work and a check up.  Then I believe around day +60 I'm going to have another scan to be re-staged.  Then sometime between then and day +100 I will start my maintenance drug (called Brentuximab) which I believe is a 30 minute infusion every 3 weeks... I think the goal for that is a year, as long as I don't develop any neuropathy (which can be a side effect).  So that's the game plan for now at least...  I'm just happy to not be sleeping in the hospital tonight, and I'm one day closer to squeezing my little guy.  :)  XO

Day +10

Well, here I am at day +10.  The nausea is finally starting to subside (wo-hoo!).  I still have zero appetite so I've been forcing myself to eat.  So day +2 I ended up with a horrible nose bleed (the air in here is super filtered, and super dry) that lasted about 4 hours.  They finally ended up having someone from the surgical floor come down to pack my nose.  My platelets were only at 13 when it started so I ended up getting a blood transfusion and 2 bags of platelets.  The following morning they decided to give me platelets again before removing the packing (they wanted me over 60).  It was nice to be done with that whole ordeal.  They also decided to temporarily stop my Lovenox shot and they changed the platelet threshold to 30 instead of 10.  Day +3 was great because Chad and Dagen came up to visit, and I really needed that.  It seemed like forever since I'd seen them.  Day +4 was also great because they unhooked me from IV fluids... which makes it way easier to do laps.  LOL My days are pretty boring... I spend time reading, knitting, or watching tv.  Such an exciting life I lead these days, LOL.  So it had been a couple of days since the nose bleed incident, so they started my Lovenox again, and bumped the platelet threshold down to 10 again.  So what happened then... another nose bleed of course!  So day +6 I woke up at quarter to four in the morning with blood dripping onto my pillow.  Awesome.  This time it only lasted for a hour... then an hour after it stopped, it started again, and the same thing happened 3 times.  So needless to say since my platelets were only at 17 they had to give me some more.  I was getting a bit frustrated with the whole thing.  They changed all my parameters again and held off on the Lovenox for a couple of days until they thought I was done with the bleeding.  Hopefully I am... I'm using saline spray like it's my job, lol.  My parents both came up for the weekend, so that was nice.  They shared my boredom with me, LOL.  My WBC are slowly starting to go up (I started Neupogen shots on day +5) but I still don't have a neutrophil count.  And I developed an infection somehow and am on extra antibiotics for that.  Apparently it's pretty common... still sucks though.  I had to be put back on fluids yesterday because my blood pressure was really low (70/48), so that was a bummer.  But overall, things could be a lot worse.  My body seems to be cooperating slowly with making my new cells... but I'll take it, LOL.  I should hopefully be getting another visit from Chad and Dagen this week, and my dad is coming up for the weekend again.  So at least I have that to look forward to  :)

Day 0

Thought I'd give a re-cap of transplant day (to the best of my recollection anyway).  I had two different methods of removal for my stem cells, so they had to separate them out and give them back to me in two different periods.  I woke up that Saturday and made sure to have some breakfast (bad idea) and then at 10:00 they brought in this pretty cool looking machine that had 6 bags of my stem cells in one compartment (looked like they were in dry ice), and another compartment that held the warming bath for the bags of cells.  I also received a little bag of suckers with a Happy Birthday tag on them, lol.  Apparently when they are re-infusing the cells most people have a funny tickle in the back of their throat, and they've been told that the suckers can help.  Basically, one bag would be thawed, and when that bag was almost done infusing back into me they would get the next one ready to go.  I definitely felt the tickle, so I started on a sucker.... made it almost all the way though it before breakfast decided to make it's presence known again, lol.  And that was pretty much how my day went.  I had 6 bags done in the first session, and then they were going to give me a couple hours to rest before they finished.  I felt like hell, LOL.  I think I must have slept a little bit, because I don't really remember much besides talking to my dad a little bit and them coming back with the second batch.  The last 5 bags were much harder on me... most likely because of the preservative DMSO... I was on overload.  They were pumping everything they could get into me to help with nausea and vomiting, but all in all, I made it through!  The nurses seemed pretty surprised that I was as coherent as I was with the amount of ativan they had given me, LOL.  I pretty much just felt horrible and tried to go to sleep early.  Of course they also gave me Lasix to try to move the preservative though my body faster, in hopes that I would feel better.  And it's a good thing they warned me that when I did pee that I was expelling large quantities of dead red blood cells in my urine.  Good to know, would have freaked me the hell out if I hadn't been warned... bloody pee is not something I had first hand experience with, LOL.  Anyway, so now it's just a waiting game to see how long before my bone marrow starts to cooperate and repopulate my body with the good stuff.

I'm at day +2 now and not feeling to shabby.  I'm pretty tired but I'm still getting up and doing my laps like a good girl, LOL.  My appetite is pretty much non existent so I've been forcing myself to eat so I don't have to be fed through my IV.  My neutrophils are still about non existent and my platelets are down to around 13 as of this morning, so I won't be surprised if I need to have another transfusion done in the next day or two.  But I'm hanging in.  XO

Quick update

Well... here I am.  All done with chemo and getting ready to get my cells back tomorrow.  Wo-hoo!  The chemo wasn't as rough as I thought it was going to be (granted it was no picnic either) but I made it through.  I just had two days of "rest" for my body before I get my cells back.  Overall I feel pretty decent, unless you count the constant nausea.  Luckily they have a wide variety of meds to give me to treat it.  The real fun will be tomorrow around 10am, when they start infusing my stem cells back into me.  I have to have some done in the morning, and some done in the afternoon (since I collected two different ways).  I've already been told that I'm at rock bottom... I have a neutrophil count of zero right now, and I'm pretty tired.  So I'll be interested to see how this makes me feel, and how long it takes my body to start bouncing back.  So I'd appreciate some positive thoughts and good vibes for the process!  Thanks to everyone that has sent me a kind thought, word, card, book, or gift... I really appreciate everything.  Since tomorrow will be my re-birthday (day 0), I'll have something new to celebrate every year.  Above all though I wish I was home with my family!  XO

Fun times in 5 east

Guess it's time for another update...  I'm just finishing my second day at Roswell, so far, so good.  I checked in yesterday morning around 6:30am and made myself at home in my room on 5 east.  My chemo started at 9, and ran for 30 hours.  And made me feel like crap.  LOL, big surprise there.  I slept a lot during the afternoon when I wasn't getting sick.  Physical Therapy came by in the morning to let me know what I was supposed to be doing everyday as far as physical activity... they want me to leave in the same condition I came in, which makes sense.  My daily goals are to walk 1 mile (33 laps around the nurses stations), use the nu-step machine for 10 minutes, 25 step ups with each leg, 25 sit to stands, and I have to use my incentive spirometer regularly (which my mom being an RT loves to shove in my face, LOL).  I only managed to do 5 laps yesterday... I was just too tired and weak.  They were doing their best to try different meds to see what would work best for the nausea, and today my Dr suggested a cocktail that seems to have done the trick (ativan, haldol, benadryl).  I was able to eat dinner tonight with success!  I was also more active today cause I felt a little better after my morning transfusions.  I had to get a unit of blood, and potassium and magnesium.  I did 20 laps and all my step ups.  There's progress for ya!  :)  The chemo that I had this afternoon I will get for the next 3 days, and it's about a 2 hour infusion.  The downside to this one is it can damage my bladder, so I'm being hyper-hydrated and then given Lasix to help flush everything out of me.  On the plus side, my harvest sites are not nearly as sore tonight, and my bandages and steri strips have been removed.  Just sitting here missing everyone, hope I fly through this so I can be back home soon.  XO

Let the games begin!

Ok... so I'm all ready to go.  Came back up to Hope Lodge in Buffalo with my mom on Tuesday so I could be at Roswell bright and early Wed for blood work and my bone marrow harvest.  Things actually went pretty smoothly... everything was running on time and I didn't have to do much waiting around.  Got all my pre-op stuff done, signed all the necessary papers, got an IV started and was ready to roll.  They gave me some versed in my IV before going to the OR, so I was pretty happy on my way there, and I only remember the mask being on my face for about a minute before I was out cold.  Woke up in recovery and felt ok (I was full of dilaudid), definitely had a sore throat from being intubated.  But man oh man when the pain meds started to wear off... wooo.  I felt like I'd been hit in the hips with a sledgehammer.  They had to come back in and change my pressure dressings cause I was still bleeding a little bit, and they gave me more meds for pain.  I also had to have a blood transfusion done because they took almost 2 pints of blood and marrow out of me in the OR.  The transfusion took a couple of hours, so I just hung out with mom and tried to knit (very unsuccessfully I must say).  We got back to Hope Lodge around 3:30 and I just took it easy for the rest of the night... pain meds weren't helping much and I was pretty sick from the anesthesia.  Sorry if the pic grosses you out, I couldn't resist and had to have mom take a picture when they were changing the bandages.  Those are just steri strips covering the holes.

I went back to the BMT clinic this morning after getting more blood work (another 16 tubes) for my pre-admission work up, and at around 10:30 I went to get another central line placed for my chemo.  This one was a little smaller than the last one I had placed (for stem cell collection) so it wasn't as bad.  So I now have my new "jewelry" with 5 lumens instead of 2.  I had to go back up for one more blood draw after the line was placed because they had forgotten to check my kidney function.  After that mom and I were off to enjoy my last day of freedom for a while.  We went to Red Robin for lunch (neither of us had been there before) and gorged ourselves, LOL.  Came back to Hope Lodge and took a nap, which was probably a horrible idea, cause now I'm wide awake and I should be sleeping... but what can ya do.  Spent an hour or so in the kitchen talking to some of the great people that we've met while staying here and saying my goodbyes since I'll be leaving in the morning to get admitted.  I'm supposed to be there bright and early at 6:30 (oh joy!!) to get everything rolling.  Not looking forward to getting poison for breakfast, but it's part of the deal unfortunately.  Ready or not, here I go!  LOL

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.  :)

More scan results

Well here we go... for those of you that don't already know, my most recent PET scan was still positive.  There's no new activity, but there's still some present that showed on the last scan.  So no remission for this lady... My Dr doesn't think we are going to be able to get things any better than they currently are, so I'm going to go ahead with the next consult at Roswell in a couple of weeks.  Hopefully there's another treatment they can try before the transplant... cause from what I've been hearing and reading, transplant without complete remission first is just setting up for another relapse.  Guess I'll just play the waiting game for now and see what they say.  I also want to say thanks again for all the positive thoughts and prayers.  And I really appreciate all the cards, gifts and kind words  :)

Update

Hi again.  Thought I'd update since I've had a few people ask what's going on lately.  I finished up my chemo at RPH 2 weeks ago, so I'm feeling pretty good.  The first few days after my last treatment were some of the worst so far, so I'm glad I'm done with it for now at least.  On Friday I have another PET scan to check to see if I'm in complete remission.  I'm hoping for yes, because I can't proceed with the rest of my treatment until I am.  My next consult at Roswell is in the beginning of March, and hopefully at that appointment I'll get an idea of when things are going to get rolling.  For now, I'm just going to enjoy time with my family while I'm feeling good, before the real fun begins.  :)

Scan Results

So I've got good news, and not so good news after talking to my Dr yesterday.  The good news is that the uptake on the PET scan went from a 12 down to 3.9... the bad news is that it still showed a small amount of activity (hence the 3.9).  So it looks like I'll be postponing my next appointment at Roswell and doing more chemo Mon-Wed next week.  And then I'll have another PET scan the following week.  Bummer.  I did however, manage to get through the second treatment without complications like I had after the first one, so hopefully this one will go ok as well.

On a side note, I can't believe in my last post I forgot to mention the head shaving adventure!  On Dec 30th I finally decided I'd had enough of my hair falling out in clumps, so I had my husband shave my head.  We took a family selfie before, and a few other pictures, and then got to work.  To my complete surprise, after he was done shaving my head, Chad (who had his very long hair pulled back into a ponytail) said "ok, now braid my hair and then cut off the ponytail and shave my head".  I think I asked him about five times if he was sure before I did it, lol.  I think he's pretty much been growing it out since we got married (6 years ago), so the experience was probably more traumatizing for him than it was for me.  I'm happy he did it though, I was super bummed that I had to cut mine again (it was just getting long enough again so I could tuck it behind my ears), and it was nice to have him support me in that way.  Now that my hair is really falling out at a good pace, it's nice to only have to clean up little short hairs as opposed to clumps of longer ones.  I've finally started wearing a bandana over my head when I go out, and it's funny because Dagen gives me the strangest look when I have one on.  Apparently he's gotten used to mommy with no hair, lol.

One more thing... I'd just like to take a minute to thank everyone for their kind words, well wishes, positive thoughts and prayers.  And for those of you have taken a minute out of your day to send me a message, or a card, or a gift... thank you so much for taking the time to think of my family and I and do something nice.  We really appreciate everything!!

This is our "after" family selfie, lol  :)

Quick update

Hello all!  Sorry I haven't posted in a little bit, things have been pleasantly uneventful so far.  I had chemo again last week, Mon-Wed, and my neulasta shot on Thurs.  Started with the nausea/vomiting on Thursday evening into Friday, but the vomiting was gone this time by mid afternoon.  Once again I was in hermit mode, relying on Chad to do most of the baby duties on Friday.  Saturday I was still nauseous and slept quite a bit, but by Sunday I felt ok and was able to go to my parents house for dinner.  I'm still doing my blood thinner injections twice a day, and unfortunately I was told that I will most likely be doing them until 6 weeks after my picc line comes out, whenever that may be.  Due to the hit that my platelets took after the first week of chemo, I'm now heading to Corning twice a week for blood work to keep an eye on my levels.  I'm also hoping to avoid the neutropenic fever this time around, along with the sore throat/nausea and vomiting party I had while I was in the hospital for Christmas.  But unfortunately, it's out of my control.  This coming Friday I have my next PET scan to see how things look.  If everything is negative, then I will be done with chemo until I'm admitted to Roswell.  If it's still positive, then I'll have another round of chemo done at RPH.  Here's to hoping I'm all clear!  My next consult at Roswell is 1 week from today... since I'll have had my scan, hopefully I'll find out some more details as to when we are going to be getting things rolling.