Quick update- all is well

So I realize I kinda left this blog and my readers on a cliff hanger, I want to first off apologize for that. It was not my intention.
After my transplant I got quite sick and did not want to do anything. Still not sure I am ready to write about it as it was not a pleasant experience, so I will leave that for another day. The transplant itself went well and was successful. My latest PET was all clear. So now its trying to move forward, which is harder to do than I even thought. Guess it gets tougher when you have already been through a relapse.
It is my goal to start to write again, but I am struggling with the motivation to do so. So those of you who have hung in there, thank you. I will try not to leave you hanging so long next time

BEA...M

Well we are working on the BEA portion of BEAM, I had B the first day, the 4 days in-between I am loaded up with EA and on day 6 (Thursday) I get M. Friday is transplant day... day zero, re-birthday, what ever you want to call it I have heard many names, lol... but a big day none the least.

So I am fairing pretty good, getting a little nauseous but nothing extreme, getting a little tired and emotional due to the tiredness but what can you expect when you are woken up multiple times a night to go pee and get vitals done. Its a fun time I tell ya.

I have a great roommate and great nurses which is fantastic. Our one male nurse has a blast with us and holds pissing contests to see who peed the most. She beats me everytime by a few hundred ml buts its always close, lol... gotta make fun where you can around here!

Starting to go a little stir crazy, walk figure 8s in the halls between the two wards to maintain my sanity. Provided there is any left at this point, lol...

Hubby spends lots of his days here which helps a lot, just having a tough evening missing the kids like crazy tonight.  Skype is helpful but you cant get cuddles through it :(

Still got my hair, falling out slowly, should be interesting to see how long it takes to all fall out.

Well Im going to go do some figure 8s and enjoy the views.

Goodnight my dear family, friends, and followers

Catch up time

As I sit in my 150 sq ft. apartment (if you can even call it that) rental in Vancouver I have some time to take a breath and catch everyone up with the last week. It has been a crazy one so its nice to have a little unexpected downtime today.

I will start off with the G-CSF shots... not horrible, but not nice by any means. The shots themselves hurt 2/4 days. We experimented with different parts of the body and the spot that was virtually pain free was the stomach. My poor stomach. I had 2 doses of the G-CSF so that meant 3 shots to the belly on those days... its bruised pretty bad to say the least. The bone pain wasn't too bad for me, Claritin did not help. I had a dull ache in my lower back, and sometimes if I moved too fast I would get shooting pains up through my back but it subsided quickly thankfully. So all in all not too bad of an experience.

So that will bring us to Monday when I go in for my Tri-fusion line insertion. I hadn't been told much about it to start off with, so imagine my surprise when I get there and they tell me I need an IV. I completely broke down. As we all know by now I have no veins which is why I was getting the line in to start with. So they try to console me and tell me they are experts, not to worry. I have heard that line before so I was not reassured. So the nurse comes in and beats the crap out of my hand. I am glad they are able to use a small IV as any bigger veins are completely gone. The nurse gets the IV in my hand the first time. Thankfully. So going in I am told they give me a sedative and fentanyl for the pain, and there's a good chance I will be loopy and not remember the procedure. Sounded good to me. After the problems with the PICC line going in I would rather not remember any of this. But do you realize what happens when you are mentally freaked out... the drugs don't work too well... I was very coherent for the whole procedure... which sucked because as usual with me it wasn't just a straight forward procedure. Needless to say anytime I felt any twinge of pain I was asking for more fentanyl, which they gave me, but I ended up having a LOT more than they usually use... oh well... It wasn't major complications they were running into, but with the Tri-fusion line the tubing is thicker and stronger and therefore not as flexible as they are used to with a normal Hickman  line so it took a bit more to get it in place. But they got it, and unfortunately I remember the whole thing... its not pleasant to feel them tunneling under the skin for the tube I tell ya, nor is the fact I can feel the tube under my skin if I run my hands over it too pleasant either, but it is worth it for how easy it made yesterday.

So this takes me to yesterday, stem cell collection day...

 

 

Here I am all hooked up with the blood flowing out of one lumen, through the machine, and back into my body through another lumen. (I have 3 lumens, hence the name tri-fusion).

 

 

here is the cell separator machine

 

 

So I lay in the bed for about 6 hours while the machine does its job and I watch tv, not too bad of a day but it makes it kind of long when you can't do anything but lay there. So after the 6 hours they take a sample and send it to the lab and tell me to come back in 2 hours for results. The doctor who saw me in the morning was optimistic we might get all the cells in one day based on my counts in the morning, my age, and the lack on chemo I have had previously. Well he was right. I go back for my results and they tell me I am good to go!! Woohoo... hence why I have some unexpected downtime today.

 

So today I get to pop over for a quick dressing change as my incision to my line still likes to bleed a little (I can never be straightforward now can I, lol), then a Dr.s appointment in the afternoon. Tomorrow we have another dressing change set up Friday just in case I don't get admitted. I wont find out till lunchtime Friday if I go in, so its all very last minute. So for today I will enjoy time with my hubby, some sunshine if it pops through, and not having to spend another 6 hours in the hospital. Just wish I could be with my kids too!



enjoying life in the moment

Not much going on health wise this week which is a nice change. Picked up my Neupogen shots today which I start on Friday. Not looking forward to more shots on a daily basis but what can you do. I have heard taking Claritin can help with the bone pain it causes so that's what I am going to try. Want to be able to enjoy my last weekend at home without pain if possible. If not I have T-3s to fall back on. It will be a good weekend one way or another.

Had some bloodwork done this morning, it went well. The tech got it on the first try and it didn't even hurt. Last blood draw will be Sunday. After my Neupogen shot on Sunday its off to Vancouver for the next 6 or so weeks... boy am I going to miss everyone, especially the kidlets. Enjoying my time with them now however. And we are hooking up Skype to keep in contact so im sure that will be helpful to us all.

Spending most of this week trying to visit lots of friends before I go over, over the weekend we had a family wedding and BBQ so I spent all weekend with a tonne of the family which was terrific. We don't get that much family in one place too often so its great to catch up, and of course get lots of hugs from everyone. I never turn down a hug, just ask anyone I used to work with, lol... Im a hugger, lol ;)

Will probably be quiet over the next few days besides the visiting I am trying to get in, so hope to update Friday night and let you know how the shot went... cross your fingers for no bone pain!

Rough one today

So today was my day of needles... I am really starting to hate needles, and they apparently feel the same way.

Start off the morning getting to the hospital and hanging out in the unit for a bit while we wait for procedures. Nurse comes in, who was super nice, and wants to do blood work... of course she does, lol. I warn her about my veins so she warms me up and then starts looking. Its never a good sign when she says she has not seen a case as bad as mine in a while. Well that's reassuring isn't it. So she tries in the elbow crease... no go... switches to the hand... no go... she is done trying. So the Dr. comes in to do the bone marrow biopsy and aspiration, and the nurse sees if yesterdays blood work will do. Dr. gets all set up, freezes the crap out of my butt, which does sting a little, but not too bad. Proceeds to do the aspiration part is where they put the needle in your bone and take out fluid, this really hurt, like screamed out a few times painful. Then it was time for the biopsy part when they take some of your bone. Well guess what, this was extremely painful as well, I was crying by the end of it. Not too sure why mine was so painful compared to other stories but it was. Hope like hell I never have to do that again. I even had morphine and Ativan before hand which didn't seem to help a bit. So after they are done their torture I get to lay awkwardly for 45 minutes on a hard pack so we don't have bleeding issues... no issues there.

Then another nurse comes in with the blood work cart and apologizes, we do need different blood for today. Luckily she was able to get a vein with a bit of digging and maneuvering, just as she was about to give up. Boy to my veins suck, did I mention that yet? LOL At least she was able to get what she needed.

Had a bit of time before the Lumbar Puncture so we watched some TV and ate lunch in the room. 12:30 the next Dr. comes in and asks if I'm ready. Yep, sure, lets do this thing.

So I lie on my side curled into a tiny ball when he presses and probes my spine, satisfied he tells me to relax while he gets prepared. After preparations its back into my little ball as far as I can. He walks me through what he is doing, prepping with the cleaning stuff, then its time for the freezing. This freezing stings more than the other stuff, but I think it also worked better. He puts the needle in, gets his fluid out. Puts another needle in and injects some chemotherapy into my spine. And then he is done. Pretty painless this time around. Then I get to lay on my stomach for 45 minutes so the chemo can work its way up to the brain.

In case your wondering why they are injecting chemo into my spine, its in case there are any pesky cells floating in there that regular chemo cant get to do to the blood-brain barrier. Pretty cool stuff.

So now I am laying in the hotel bed thankful today is over and that tomorrow is just a day on consults. I have a sore gluteus maximus which makes sitting and laying down awkward and uncomfortable. But we did get out for a nice little walk around the hotel in the sun after dinner, so that was a nice way to end a day that had a rough start.

As always, thanks for reading and joining me on my journey :)

Doing better

So after my breaking point, spent most of the day and evening with the water works... it was to be expected at some point, but it was also therapeutic and since then have been feeling pretty good.

Enjoyed the last three days with no tests to worry about, just giving myself my Fragmin shot every morning, which is getting easier to do each day!

Had a great time on Friday with my son's class at the field trip to the beach. Got to sit back, relax, and chat with great people all while watching all the kids have a blast. It wasn't the nicest day, but the rain held off so that's all we can ask for some days.

Tomorrow is a busy day. Start off my having to do 3 shots to make a 1/2 dose, sounds lovely for sure. Then is off to the hospital for blood work and a CT scan. Luckily this time if an IV is not possible we are just doing the oral contrast and will leave it at that. I am still pretty battered and bruised from last week so we will see. After the CT its time to head over to Vancouver. Tuesday I have my BMB (bone marrow biopsy) and Lumbar puncture. Wednesday I have dental x-rays, dental consult, thrombosis consult due to the blood clot, and then my consult with the apheresis unit.

Due to the fact that my veins suck so bad we have changed my dates a little. Still getting my Hickman trifusion line on the 8th, but now the stem cell collection will follow so we don't have to use my arms. The collection was moved a week but my admission date was only moved by a couple days so we are not too far off of schedule!

Hope to update after my appointments if I feel up to it!

Found my breaking point

I new it was a matter of time with all the shit going on in my life right now. I can't talk about it all, as some things are to remain private, but with the toll everything had taken on me today I lost it.

They have found a blood clot in my arm where the PICC line was, that was ok, we have started blood thinner injections and it can be controlled and hopefully resolved that way. Well this morning I went to the ER to get my lovely injection (not able to do it to myself, at least not yet, something about causing myself pain with needles doesn't work with me mentally, lol),  and  I mention that my breathing is a little different, hurts a bit to breathe deeply and weird random chest pains. So they take me in and do and EKG, all looks good there. Dr figures maybe the clot is embolising  in my lungs a bit, but since treatment would be what I am doing that unless things get extreme we will just see how things go. No problem. Thought this might be the breaking point didn't you... nope, not yet.

So after this I have my lung function test... well after talking with the person who does it, she consults with my Vancouver team and they decide to postpone it until we know if anything is going on in my lungs. So I get the phone call on the way home that they want to do a PE (pulmonary embolism ) CT scan. Ok, no problem, still doing fine.

Go back to the hospital for the 3rd time today. Warn the tech I have bad veins, no problem... she tried once and decided to get the full-time guy who was on supervisor duty that day to try as he is much better than her... no problem. He tries the same vein, no luck, catheter  would not feed up into the vein once he got it. After some pain and digging he gives up. Asks about the other side, where the clot is... Im not sure if we can use it I tell him. Consults with the radiologist, they decide if they can find a good vein there is it should be fine to use it... so we heat up that side, find a nice juicy vein and he gets it... or so we thought... no blood return... try the saline flush again... ouch... im in extreme pain all of a sudden... the vein is gone...

I lost it... nothing like lying on a stretcher crying because they cant get a stupid vein. This is what has put me over the edge, my mind has said no more.

Luckily the radiologist and my Vancouver team both agreed enough. The radiologist is quite sure we are not dealing with a PE so we can wait till Monday to do this study with my regular CT scheduled. They are booking me into the chemo nurse to try to get the IV that day. If it doesn't work again, we will put it on hold till I get a line in while im in Vancouver and do it then.

So who knew it would be something as stupid and not getting a vein in to push me over, I sure didn't, lol... but I think Im about done with all these little extra crappy things on top of everything else right now.

Outpatient chemo complete... with a trip to ER

So I will start with the good news, I am now done my GDP chemo... yeehaa!! No more chemo till I hit Vancouver as an impatient. Im sure I will enjoy these next couple weeks to the fullest (in between the mountain of tests and appointments that is)

And now for the not so good, spent the morning in the ER. Since my last chemo on Thursday, my arm has gotten increasingly sore, especially when I tried to straighten it out. So after the past two days of pain and not using my arm I decided I should get it checked out as things were no better. So off to the ER on a beautiful Saturday morning I go. When I get there I explain the pain, they do blood cultures out of the PICC and out of my other arm for comparison. Those results will take a few days to see if an infection has popped up, but there are no visible signs of one. Arm is just a little swollen. Since the PICC is not longer necessary, just holding on to it for a CT, we decided it was best to remove it. Now, getting the line in was agony, getting it out was a breeze until the nurse had to apply pressure to the wound. OOUCH!!! Did I mention how sore my arm was to start with!! Yep, that part was painful.

So now I am PICC less, still covered in bruises from the original insertion (black and blue still!) and not sure what happened to cause the pain but just hope that the removal solved the problems. Still a little tender now, so we shall see in a few days how it feels.

Monday and Tuesday this week are pretty uneventful days, Wednesday I have the lung function test and Thursday I have the Heart tests. Will update with those procedures as they happen.

Now to go and enjoy the rest of my day :)

Here is what the arm looks like right now!

 

Cycle 2, day 1

Only one more of these to go and its the 'easier' of the two!!! Excited that we are almost done this part and getting terrified about whats to come, but im not going to dwell on that.

I am strong, I will get through it, just kinda scary going into all the unknowns. I did chemo before so it was pretty easy to be cool with that route again. Been there, done that, no worries. I will save the worries for later, or I will get rid of them. Either way I WILL fight this nasty ass disease once again and I WILL beat it again. Just takes a bigger stick, right?

So onto my actual treatment today... have I mentioned how much I love my PICC line now im not in constant pain from it! Its wonderful, so easy... quick and painless hook-ups to the ivs... definitely a good way to go if you ever have the need.

It was the 'nasty' one today, so it took longer, just under 3 hours start to finish. Still way shorter than ABVD though! Felt pretty good all day but now the tiredness is kicking in. It will stick around for the next 3-5 days im guessing like last time... odd effect for me as the steroid they give me (Decadron) is supposed to cause energy and wakefulness.... I am the opposite, but we all know how special I am anyways, lol.

Ok, getting hard to type things with out messing up the words everywhere so I am heading off for the night...

Just wanted to thank all the people who take the time to read this, and if you are fighting along side me remember that we WILL kick cancers ass!!

Pre-cycle 2 doctor appointment

Had my check-up with the oncology doctor who oversees where I get my treatment today. (if you have been paying attention you will have noticed this is the 3rd oncologist I am dealing with this time around, last time I just had the two)

So the check-up went pretty well. We discussed the side effects I have been dealing with, was told that I could have a prescription cream for the face reaction I have been getting but I didn't think it was necessary as it doesn't bother me, just looks horrible. We are going to up the pre-chemo meds to help with the nausea I experience afterwards for a few days. The last couple days I have also had a dry cough in the mornings and some shortness of breath while doing things like walking up hills so we also did a chest x-ray as a precaution, although my lungs sounded fine.

So my afternoon was 4 waiting rooms for all my different appointments, as I had to do blood work today as well!

So if anything comes up on the x-ray I will get a call tomorrow, if not we proceed with my next chemo on Thursday... the bad one :(

I found the perfect shirt while cruising the web one day, really wish I had one of these:

 

 

 

 

Says it all dont you think!!

The Plan

Ok, so this is the post where I lay it all out and try to explain things so it may end up lengthy, for those that know the stem cell transplant process, feel free to gloss over, lol... for those that want to know exactly what my next  3 months look like... read on!

So we will start with June. I finish up my GDP chemo by the 14th. The 25th I have a bone marrow biopsy and aspiration. This will be done in Vancouver, as will a lot of what follows.

Bone marrow aspiration removes a small amount of bone marrow fluid and cells through a needle put into a bone. The bone marrow fluid and cells are checked for problems with any of the blood cells made in the bone marrow. Cells can be checked for chromosome problems. Cultures can also be done to look for infection.

A bone marrow biopsy removes bone with the marrow inside to look at under a microscope. The aspiration (taking fluid) is usually done first, and then the biopsy.

The 26th I meet with the aphresis team so they can evaluate my veins before stem cell collection. This may be a scary one for me as I have no veins left in my poor arms... hopefully it will go better than I am imagining! I may also see the 'cancer' dentist this day to make sure my mouth doesn't have anything lurking that could cause problems after the transplant.

So before all of this fun stuff I will also have other tests that I don't know the date for yet. These are tests to make sure all my major organs will handle the transplant process. They will include blood work (they cant get enough of that these days, 12 vials yesterday!!), a kidney function test, lung function test, maybe and echo cardiogram, not sure what test they do for the heart yet.

The next step after making sure my body will withstand the transplant is to get ready for the transplant.

June 28th-July 1st I will get a series of neupogen shots. This stuff is pretty cool as it stimulates the production of white blood cells, in particular CD34 cells. This makes more cells available for the harvest of stem cells.

July 2nd and 3rd is off to Vancouver for the actual harvesting of my stem cells. I will be attached to IVs on both arms, one arm will be sucking the cells out to be harvested through a machine, while the other arm gets the remaining blood put back in (apheresis). Similar to dialysis of the kidneys we were told.

July 8th I will go back to Vancouver to get a Hickman Line inserted. good news is after my chemo locally the PICC line can come out. The Hickman Line will come out of my chest and have 3 tubes attached so they are able to have multiple things hooked up at the same time. Sounds like it is better than the PICC, but with my issues I have concerns with everything that has to do with veins!

July 9th is my admission date, go in and get ready. July 10-15 I will be receiving BEAM chemo.
      carmustine (BiCNU®)

etoposide

cytarabine (arabinoside)

melphalan

This is a high dose chemo that will wipe out all the white blood cells in my system, hence the need for the transplant after.

July 16th is day 0, this is the day I get my wonderful stem cells put back into my body. For the next 10-15 days I will be in the hospital in an isolation ward (yes I can have visitors) until my blood counts start to climb up. It takes about a week for the levels to increase, so in the meantime I have no immune system and will be receiving blood transfusions as needed. After my counts have started to climb, I get to go out of the hospital... but not home yet. For another couple weeks I have to stay somewhere that is close to the hospital as I will be in on a daily or semi-daily basis to keep watch on how I am doing. Hopefully if all goes smooth I can be back home mid- August.

At the end of August I will have a PET scan to make sure the transplant was successful. If its all good then it goes to regular scheduled check-ups, if it come back bad then we will go on to radiation.

I think I have included everything that will be happening. As things happen I will update on the procedures and how things went.

So until then I will say goodnight!

 

Quick update

Just going to do a quick update of the last week as I have really not felt like writing it all down this time.

Had my first infusion last wednesday, had difficulties with the IV as I had predicted... and hour later we were able to get started, but had to slow down the first infusion due to pain... surprise surprise... wish people would have listened to me in the first place! SO this chemo kicked my ass pretty good, lots of fun side effects, mostly nausea and extremely tired. Not a fatigue tired this time, but a tired tired if that makes sense. So most of the past week has been spent on the couch chilling out... one fun side effect I have gotten is a ringing in my ears that comes and goes... OMG this is so annoying!!!

SO yesterday I got a picc line put in... should help for the future infusions.... 'only takes 5-10 minutes' they told me.... LIARS!!! My veins wouldnt co-operate with them either!! SO after 3, yes 3 times, they finally got it in a vein... needless to say, my poor arm is now swollen and sore due to all that work on it yesterday.... and today I have chemo....oy vey...

So I am crossing my fingers and toes I have a great nurse today, as the dressing needs changed and the arm is sooooo tender.... if not guess I will be screaming, lol.

Nice to note that since I am only doing two cycles of this crap before my SCT, I am halfway today!!

Woohoo

Ok, thats all for now, will update again when im up to it :)

Starting tomorrow!

So it has been a fun two days... yesterday as I am getting my hair done in my warrior kick cancers ass kind a way, I find out that the chemo starts tomorrow... wasnt quite ready for it to happen on such short notice but it is what it is.

Still don't know what kind of chemo I am doing, will meet with the onc. before my chemo so hopefully get a lot of answers then!!

Till then I will leave you with the warrior cut :)

Tired of being tired...

what more is there to say, lol... I get lots of sleep, lots of rest, and am still tired most of the time. I guess this was the big clue that something was off with my body, it happened last time too. But right now when I have so much to try and do before treatment begins, I find myself just wanting to sit on the couch and do nothing. So sometimes I do.

Feeling a little alone right now, I have lots of people who can be of support, but its tough when no one know what you are going through. Some days, or who am I kidding, everyday I just wish I could curl up in my hubbys arms and everything would be better. Only 3 more weeks till he gets to come home again... too bad we have to attend the big appointment then. At least we will know what and when, or I sure as hell hope we do!!

Ok, enough of the rambling pity party...

Day 5 of the squat challenge I am doing... 70 squats today!!

Day 1 of getting ready for battle

So I have decided that since it looks like I have at the very least 4 weeks, most likely 6-8 before anything happens, I can going to prepare my body as much as I can for this next battle. I have started back at the gym to try and bulk up some muscle, and going to try to eat as healthy as I can to get my body in the best shape it can be for the treatments that will follow.

I have also started a squat challenge with a few facebook friends to add to the gym routine. Today was 50 squats!

At the gym I did my squats, some weights, 15 minutes on the bike and 20 minutes on the treadmill. Not bad for the first day back in a few months!

I have also been thinking of what I might do to my hair this time. If you look in the past posts you can see I went with a very colorful mohawk. I really love my hair this time around so I am finding it hard to deal with the fact I will be losing my new found curls. Might just add some funky color and keep the curls as long as I can!

Going to miss my new found curls

 

 



Well thats the plan, for now... trying not to overthink things right now but its tough. Its even tougher that my main support system, my hubby, is so far away right now... just wish he could be here everynight with me...

Life sure know how to throw you curve balls

I'm not even too sure where to start, so much has happened over the past couple months I can hardly wrap my head around things.

First thing is that we are moving three provinces over since my hubby received a promotion so we were all set to move and join him and now that will take longer than we wanted. Still don't have a timeline but hopefully after my next appointment we will.

ahh yes, next appointment... this is with a hematologist? Bone marrow transplant team guy...

yep, if you know anything about the Cancer world you would have guessed by now what has happened. I have relapsed. The cancer that ever so nicely went away with my first line chemo has returned. In a new spot, only one area affected thankfully. So it looks like my oncologist had decided that a Stem Cell Transplant is the best chance of getting the cure.

I wont know the whole plan until the 29th of May when I see the new doc, so its just speculate till I see the plan...

really wish I wasn't restarting the blog for this reason