Saturday, June 29, 2013

Taking it easy today...

We were warned of possible bad nausea after the meds yesterday, so we kinda rushed home so I could eat and shower before the effects kicked in.  Folks, I've been doing sponge baths for the last week, and being able to wash my hair and just stand under the shower was glorious.  I got very lucky, and other than some stomach weirdness (closer to heartburn feeling), I am feeling ok!

For documenting purposes, here's a picture of me with the not so fun bandages.  Soooo glad to have those off for 2 weeks!

However, I have been tired.  I'm embarrassed to say I now snore, and sometimes so loudly I wake myself up!  The other foretold side effects that have started kicking in are the bad taste (or maybe changing taste buds is a better explanation).  I thought this was starting, but it wasn't till I had a hot chocolate this morning and realized it didn't really taste like chocolate that my suspicions were confirmed.  The nurses recommended I eat all that seems appetizing now while it tastes good, so I enjoyed some gelato we had in the fridge (and almost bit my husband's head off when he suggested I take it easy - he's still worried about the nausea they warned us about!).  I also had TWO mayorcas today!  We've been keeping some frozen in the fridge and it seemed like the perfect occasion!  Mayorcas are a Puerto Rican sweet bread, similar to Hawaiian sweet bread, traditionally eaten with powdered sugar on top.  They are amazing, and I've spent the better part of 6 months tweaking a bread machine recipe to get the right taste!

What's the second weird side effect?  My nails are changing - they seem a little stiffer, more brittle, and they seem to be getting darker.  Thankfully my Mom is willing to fix the mani/pedi my sister gave me so I can hide the claws!  Apparently they could turn brown, and i would prefer to not even see it!

Last thing I'll say is that I've been looking for ways to have fun with my daughter with all this craziness going on.  My husband is looking into getting her a small slide/swing set for the backyard.  And what do i do?  I got us Little Mermaid wigs!  She likes playing with the hats, and while she doesnt seem convinced by the wig, she seems to like it when I sing with it on. ;). I have been rocking my short hair, but I think I could get used to some fun colored wigs!

Friday, June 28, 2013

Round 1 of chemo, DONE!!!

Round 1 is done!!!! :)  Just 5 more to go.  I am feeling OK, just tired (as expected).  The good news is that they took off the pump today, so I am no longer attached to tubes and can shower like a normal person!  Needless to say, showering is amongst the priorities for tonight.  Plan is to eat, shower, and SLEEP!

I got to see my thoracic surgeon today (Dr Robert Cameron), who said my chest xray looked good, my incisions look good (although to me they are SCARY deep), and that basically he shouldn't ever have to see me again.  My husband and I thanked him profusely for his help, because he was a major player in expediting my diagnosis.  If anyone ever needs a thoracic surgeon, he's the guy to call (and send me an email anytime if you want all the details of why he's on our hero list).

The most common side effect of the drug I got today is nausea, so my oncologist sent me home with plenty of anti-nausea medication, just in case.  I am crossing my fingers that this will be another one of those symptoms that I will skip, or only mildly feel.

Thanks again for all your love and support!

Thursday, June 27, 2013

Round 1 Day 4

Quick note from my phone again! Round 1, Day 4 down! I'm feeling more tired today, so off to bed. I woke up this morning hyper again, but kind of lacking the energy "oomph" to go with the hyperness. To top it off, I was given Benadryl to counteract a slight allergy I'm developing to the glue from the pump/port bandage covers. Sleeeeeepy Joelle is what I feel like!

I had a lovely visit from my cousins today, it was great to see my daughter entertaining them! ... And I got to enjoy an In n Out burger for dinner, because I had been craving it for a week now and finally felt good enough to eat the fries and milkshake today. Don't get me wrong, we're trying to eat healthy here, but sometimes you have to eat what your brain wants. :)

Tomorrow they remove the pump, and I will have 2 weeks of being able to shower without having to worry about these bandages and cables! :)

Wednesday, June 26, 2013

Hair OFF Party!

First off, Round 1 Day 3 went pretty well.  I woke up hyper (again), and felt fine except for some nausea on the drive to LA (thank goodness for saltine crackers!).  I had a chest xray to make sure that everything looks good post 2nd biopsy operation (I will be seeing the thoracic surgeon on friday).  And then we spent about 2 hours at the infusion center while they gave me anti-nausea meds and swapped out the pump bag for a new one.

I was very anxious to get home, because today we were going to have visitors and I didn't want to be late!  My husband was laughing at me, because initially we had 3 hours to get home and it seemed like that would be plenty of time, but we lost 2 hours in traffic... Let's just say that lots of steroid meds and a little stress don't mix well, I was happy to get home with a little bit of time to spare.

I had read (and heard from awesome women who are cancer survivors) that the process of losing your hair can be tough.  So, I decided to adopt the awesome plan of having a mini party, and just take control and cut my hair before it starts falling off.  I had initially thought of going closer to GI Jane style, but thankfully I have an awesome friend and stylist who reminds me that he knows how to make my hair look better than I do.  :)

Our friends brought appetizers, dinner, and dessert - which is great because we needed the little time we had between driving down from hospital and the first guests arriving to just relax!  It was great to have them here, and I've also read it is good from their perspective - less weird when they see me without hair, etc.  My daughter fussed/cried a little at the beginning, but after telling her Mama was getting a haircut, that it was just a hairbrush, that it felt niiice, etc - she was fine.

I imagine you want to see some pictures...

First, I got to do the first cut!

In progress...

And here's the new haircut!  I love it already! :)

How to leave a comment on Joelle's blog?

I am so humbled by the fact that so many of you are stopping by to read my blog, especially our family friends that aren't as used to computers and the internet.  This quick post is for you, hope it helps! :)

I've gotten this question a bunch of times - so here's the easiest way to leave a comment on the blog (if you want to!).  I read all the comments, but haven't been doing a good job of responding, thanks for understanding. :)

1) Anyway, at the bottom of every post, there is a line that says something like:
"Posted by Joelle at this time     2 comments"

2) If you click on the comments link, you will get a white window for you to type in your information (and please sign it in some way so I will know it is you!  My cousin just used his initials the other day, it took me a minute, but I figured out who it was from :) )

3) Under the white text window, there is a "Comment as:" question with a pull-down menu (and it generally defaults to "Google Account").  This is the part that is confusing, so all you need to do, is click on the arrow, scroll down on the list and select "Anonymous".

4) Finally, click on the "Publish" button, and you're done!

PS - It is 5am here, I had a good night's rest but I'm hyper again this morning.  Going to try to take another nap before my daughter wakes up, we'll see how that works out for me!

Tuesday, June 25, 2013

Chemo Round 1, Day 2

Well, I got home and I'm feeling pretty good today.  I'm going to blog earlier and take advantage of this energy!

Today was supposed to be a long day (and it was, we were at the infusion center about 5 hours).  The medicine they gave me today has the potential of strong reactions, so the first thing they did was give me IV's with anti-nausea medicine, followed by Benadryl.  As an asthmatic with seasonal allergies, I'm fairly used to allergy meds - but this Benadryl was STRONG!  It made my eyes, nose, and throat all feel dry, uncomfortable, but not unmanageable.  Thankfully it also made me feel super sleepy.  Now that the day is over, my husband explained that they started the drip rate at a very slow rate, and then upped it every 30 minutes until I got to the right dose.  They start slowly because of the possible strong side effects - chills, itchiness, shakes.

I also started a high dose of prednisone (steroids) today.  I know this medicine well, as it has always been the stronger medicine when I have had issues with a bad cold and asthma.  I have complained that I have a love/hate relationship with it in the past, because I hate the side effects - hyper/jittery feeling, how my muscles all tense up and just hurt when I'm going off of it.  However, I am now learning to love it, it is what lowered the left arm/shoulder/back pain before the mass was reduced in size, it is what helped me get over the back muscle spasm pain last week, and now it is part of the chemo treatment that is helping me get rid of these cancer cells!  Now if they could just put a nice tasting coating on the pills I would be happy!

I can't remember if I mentioned this yesterday, but I will have to go in every day for 1 week (plus the following Monday) every 3 weeks - for 6 rounds of chemo.  The nurses keep apologizing to us for this being a difficult treatment, but we see it as a small price to pay for the life savings!  Besides, I have gotten to meet other patients with this lymphoma online and some end up having to stay in the hospital for the whole week. (If you are a patient, look for "Non-Hodgkins Lymphoma Primary Mediastinal Large B Cell Lymphoma" on facebook, it is great to connect with others going through the same treatment!)

I'll add a quick picture from today, I'm going to try to relax for a bit before my daughter gets home (need to bank my energies).  Thanks to all, two days down!

Monday, June 24, 2013

Chemo Day 1, post 1

Just waiting for this thing to start!  Last night I went to my favorite tapas restaurant (nope, didn't get to enjoy their lovely sangria this time) and my husband and I just enjoyed the live music and food.  It was a great way to pass the time because they are usually soooo slow!

Ooh, we've now been moved to the treatment room. It's a big room with lots of recliners. It is surprisingly calm and welcoming - obviously not spa-like, but nicer than a usual doctors office.  I'm going to pay attention now, will try another post from here later today.

Thanks for ALL your messages, I feel like today is the first day I get to fight back to cancer (vs letting things happen to me), and I feel like have an army of friends and family supporting me every step of the way!  Thank you!!!

Chemo pump info

All of a sudden I'm pretty tired, so I'm going to do a quick post before bed.  So far, I've had a little stomach uneasiness, and just a bad taste in my mouth (both things I was warned about.

I'm posting a couple of pictures so you can see what the "chemo at home" pump looks like.  It's attached to the port in my chest (the needle is uber covered in bandages, so best way to cover THAT up is with tshirts!).  And yes, I have to cover the bandage up because otherwise my daughter wants to see exactly what is going on...

On to the pump.  I will be carrying it in this stylish over-the-shoulder hospital issued bag.  It's not too heavy, and it's not too big.  My husband said it reminded him of a cassette player in terms of size.

The case has an easy-open Velcro flap for me to confirm that the pump is working.  It also makes low mechanical noise every couple of minutes, so it's easy to tell.

This is what the bag looks on the inside.  Small pump on the top side, and an IV like bag on the bottom, that holds enough meds for 24 hours. We initially thought I would be carrying enough liquid for 4 days at a time - but now understand that would require a backpack!!

That's my update for today.  I think the early morning blog post "just" went up (we had good signal for Facebook but not for Blogger at doctor's office).  I will try to add more info as to what happens during the treatments later.

And one more picture because I couldn't resist!  When I got home I had a package of cupcakes from friends, with the card "take 2 and call me in the morning".  Loved it, and they have already been sampled. :)

One day down!

Sunday, June 23, 2013

One day till chemo starts...

On saturday (a couple of hours ago), I was allowed to shower after the dressings from the port-a-cath insertion procedure were removed.  That means that I now have 4 different cuts with steri strips on me (I don't know how many stitches total), plus an awesome device that is going to preserve my veins when chemo starts.

Yesterday I had a rough pain day, with lower back muscle spams.  Based on some slight googling, it might be caused by the weird angle at which your body and shoulders are put for the port-a-cath procedure.  It probably wasn't helped by the fact that I've been listing towards the right side for days because the left side of my chest (and arm) hurt so much.  Come to think of it, I have probably been walking slightly lopsided for a couple of weeks now.  I was upset and frustrated, because I wanted to be in a good mood yesterday, I wanted to have some fun with my sister before she flew back home, I wanted to have a good weekend before starting chemo.  I am so so so glad that my family has been able to come out and visit.  They have been a lot of help keeping my toddler occupied, helping us around the house, and just generally providing a distraction from the cancer stuff.  However, I haven't been following the rules and, because I keep wanting to enjoy the moment, haven't been taking as much time to nap, recover, and just get my mind ready for next week.  I will do better next week, as I keep getting warned that I need "plenty of fluids, and lots of rest" all the time.

So, what do I want to tell you about?  I've gotten a lot of questions about "what's next?" - so here's the plan (as I think I understand it) for next week:
First off, the chemo treatment I will be undergoing is called DA-EPOCH-R, based on the drugnames they will be giving me (DA-EPOCH (dose-adjusted etoposide/vincristine/doxorubicin/bolus cyclophosphamide/prednisone) and rituximab (DA-EPOCH-R))
Monday - After doing some quick blood work to make sure I'm healthy enough for treatment, Rituximab will be administered to my port (I think the doc said this might be about a 5 hour day).  From  what we've read the first day is longer, because they need to monitor and make sure the very-powerful drugs aren't hurting my veins, that my body is tolerating things well, etc.

Tuesday - a needle will attach a small pump - looks like a pager - to my port (again, they will be nice to my veins!).  This port is attached to something that looks like a cool fanny pack, which will hold all the medicine, so that I can continue to receive chemo treatment while at home

Friday - go back to doc's office so that pump can be removed.  I think they give me another medicine then, but I'm not 100% sure
Next Monday - a shot to boost my white blood cells (neulasta) will be given.  I've had the priviledge of discussing this $7000 per shot medicine with my insurance, and have now been assured that they will cover it, and it will be administered at my doctor's office.  There was a brief period of hours yesterday where it seemed like I would need to make arrangements for the shot myself (although at a discount through a mail order pharmacy of BCBS's choosing), and that my husband might need to give it to me, but that was resolved.  Apparently this is very powerful, but has the unfortunate side effects of making bones hurt. a lot.   However, it seems to be an almost miracle drug in helping keep patients healthy and continuing with treatment, so I am happy to take it.

Next two weeks - time for Joelle's body and mind to recover so we can start again :)

I feel much better today, so much so, that we were able to go out for a bit and I pretended to be as normal as I've ever been for a little bit.  The tough part is that the prednisone that is helping me feel better, also has the fun side effect of making me anxious and keeping me up at night.  I might need to talk to doctors about better times for taking the pills, we'll see.

I've been enjoying my evening on non-sleep by reading the third book from The Hunger Games series, so at least I've been entertained!

I've been reading a lot of cancer survivor blogs (not webMDd or google, I know better than that!), and one woman wrote something that really struck with me.  She says she visualizes her cancer, and (I'm paraphrasing) says "Thank you for making me take a minute to stop, for reminding me of what really matters in life.  I have learned my lesson, now leave."  That has really resonated with me.  I've always been very driven, accused of being a nerd at school, and a workaholic with my career.  Even at first when I didn't feel well, I tried to balance what I thought was important at work, and at home, against my health concerns.  The first couple of days, when we were thinking I was going to need emergency open-chest surgery, I was still worried about getting back to work and helping them sort things out since I was going to be gone for such a long time...

In just a couple of weeks, this cancer has given me a different outlook on life.  If I could ask you to me one favor, just one little thing for me, it would be to make sure you schedule that annual check-up with your doctor, or have the dermatologist take a look at that mole you don't like, or just do the one medical thing you have been putting off because (honestly) you might be a little scared to find out it is a problem.  Do it for the people that love you, because they really really really want you to be around for many years to come.

Hmm, deep thoughts at 3am.  It's time to try to sleep again.  Good night, happy Sunday everyone!

Thursday, June 20, 2013

Portacath has been installed, Chemo starts on Monday

Well, today was another day of waking up early to drive up to UCLA for a procedure.  It was another day of fasting before said procedure, which means I was quite cranky on the way up there!  I was VERY nervous about going in for the port-a-cath insertion today, not because of the procedure itself (just installing a little medical device right under the skin that will connect to my veins).  

After getting upset that I had to provide another urine sample after not being able to eat or drink forever, I had a moment of brilliance.  I realized that maybe I am extra nice to all the health professionals I see to make up for times like today (when I am cranky and off pain meds and HUNGRY), or like friday after the 1-hour-turned-into-3-hour-procedure where I was apparently in so much pain I told the nurse I hit 20 on the 0 to 10 pain scale.  I cannot begin to explain how lucky I feel to be working with awesome doctors (and lucky to have such great friends to help us connect with such great doctors), to be seen by great nurses, techs, residents and students who are genuinely trying to help day in and day out.  

I spent a lot of time while waiting for today's procedure thinking how different it was than last Friday.  The Emergency Room at UCLA was straight out of a movie - although at times it felt like we were in an episode of Grey's Anatomy.  There were elderly patients, young patients, trauma victims coming in from speeding ambulances and helicopters - all being seen in the same area as we were.  We got to hang out in Hallway 2 (no rooms available when we first got there), and my husband and I just waited (me in the gurney, he had a little chair) and spent a lot of time watching and over-hearing the staff.  I think what impressed me the most was the young kids (yup, not me anymore) discussing the different crazy/urgent things happening and trying to see how they could be part of the action.  It takes a very special person to go into healthcare, and not a path I considered when I was thinking about careers.  I guess the fact that I find the tools fascinating (the CD with the CT scan where you can see the big mass looming over my heart and messing with my left lung just looks COOL) proves that I am an engineer at heart.

We also had a scary moment where they couldn't schedule me to start chemo on Monday because the doctor's office couldn't get pre-approval from my insurance.  My husband tried to deal with this while I was in surgery, but then of course my insurance company was trying to protect my privacy and couldn't discuss details with him.  I burst out in tears when I thought that after all I've been through this week, we might need to wait ANOTHER week before starting this fight.  Thankfully, I was able to groggily explain to the insurance guy that I knew who I was, and that I needed my husband to handle the details today.  So, my husband, my hero, saved the day, and got me pre-approved and all my appointments scheduled for next week while I was hanging out on the hospital bed trying to gather my thoughts.

Haha, this is my brain on pain meds, I need to be careful when I choose to write. :)  To make a long story short, we are home.  I am doing good, and now have this extra device installed.  My husband verified that it is all titanium (because that was a major concern of mine?!).  Now that baby is asleep, we are getting ready to watch a movie and have some normal time.   So, what's next?  The plan is to have a calm weekend, have lots of fun.  

Chemo starts on Monday, game on Cancer - we're coming for you!

Wednesday, June 19, 2013

Did I mention the hats?

One of the side effects discussed with my oncologist was hair loss.  I had initially heard that there was  chance of hair loss, and had read that sometimes it never comes back.  My doctor said that with my treatment, I will lose my hair - but that it always comes back.  So, to get my daughter (and really me and those that love me also) used to it, I bought some hats today.  I got 3 cute hats that I think look youthfull (my fashionable sister thought they were cool), and I also bought a scarf.  The scarf will be tougher to wear, I think it more closely looks like "I'm sick" when I wear it.  Day 1 of wearing hat went well, I got my daughter to wear hers for a bit too.  We took some pictures (and she probably didn't actually look at the camera for any of them)!

This afternoon, I got to hang out with husband, daughter, and siblings at the park, got to actually hold my daughter in my arms while standing, and give her a hug.  This is huge, it had only been a couple of days but I was feeling quite sad about it.  This evening, I am finally starting to feel BETTER after the 2nd biopsy.  Just in time for another procedure tomorrow. :)

Quick Update on Plan from Oncologist

Quick Update...

The doctor said that I am VERY lucky and he's very excited about my prognosis.  The type of chemo I will be getting is called R-EPOCH, and it will be administered via a pump.  It is a newer method, but has shown to have great results with the very rare lymphoma we're fighting.  I will be getting a portacath in tomorrow (to be able to use the pump), and will start chemo on Monday.  My plans for the rest of the day are to have a FUN time with my family!  Unfortunately my sister will be flying back to her home on Friday night, and I want to enjoy as much of my time between now and then.  So, if you're thinking of us, know that I am probably at the park, or taking a stroll around the neighborhood, or singing/dancing/being forced to watch The Little Mermaid movie. :)

Hugs to all, thank you for the overwhelming amount of support you have sent our way!

For those that love details, 
1) R-EPOCH stands for: A chemotherapy regimen consisting of etoposide, prednisone, vincristine (Oncovin) and doxorubicin hydrochloride (hydroxydaunorubicin hycrochloride), which may be used in combination with rituximab (R-EPOCH) for the treatment of various aggressive B cell and T cell non-Hodgkin lymphomas

2) Here is a link to a summary of the article my oncologist gave me - Link to Article - Addition-of-rituximab-to-DA-EPOCH-negated-need-for-radiotherapy-in-primary-mediastinal-B-cell-lymphoma.  Here's the best quote "During a median of 5 years of follow-up, the event-free survival rate was 93%, and the overall survival rate was 97%."

Tuesday, June 18, 2013

We have a diagnosis!

I just got an updated email from my oncologist this evening (yes, I feel very lucky to have an awesome team of doctors taking care of me already), I let my doctor's email explain...

"Joelle, the results are in, and as I was hoping, it's "mediastinal diffuse large B-cell lymphoma". This is the best of all the possibilities in terms of both the treatment and the curability."  

Mediastinal diffuse large B-cell lymphomas have very good initial curability rates (in the 80% and over), so we are celebrating at my house today! :)  We will be seeing the oncologist tomorrow to come up with the official plan and hear more details (stage info, what type of treatment and for how long, when to start chemo, etc).  While I'm still googling (of course), and processing the news  - this is about the best possible news we could have received today!  We had hugs all around, and there's big smiles.  I might even stay awake for a bit tonight instead of crashing with these pain meds.

Good night friends, thanks for all your support!

Monday, June 17, 2013

The power of a warm shower

I was allowed to remove the wound dressings today, which my husband did while I kept my eyes closed!  I shouldn't have been so hesitant, they look great! I have a 1inch incision above left breast where they did biopsy from. It is a little swollen, but looks good.  There is a horizontal 1/2 inch incision right between my breasts where drainage chest tube was.  I was allowed to shower and just let water run over cuts, which means i still have a lot of sticky stuff and Betadina around the 2 cuts, but most of the sticky/orange stuff (betadine mix or something) that was on my face, neck, shoulders and tummy has been removed!

I feel so much better after showering, that I'm going to celebrate with a nap.  I think I'll be able to lower the pain med again later today so I'm not as groggy...

We're back to waiting for biopsy results, I already emailed my oncologist, hoping to hear something soon!

Saturday, June 15, 2013

Post Biopsy quick update

Just wanted to say that we are home from biopsy. I won't lie, there has been a LOT of pain - but I'm happy to be in my own house.  I will give a more detailed update later, but this is a quick post to say that we are home, that 2/3 of mass was removed, but that we still need to wait for pathology reports (which could again take around a week).

Thanks again for all your prayers, good thoughts, kind wishes - and just checking in and being there for my family!

2nd biopsy done!

This is a test post via email, hope it works!

PET scan results showed up right before surgeon appointment yesterday. The "very large" mass had grown, there is a possibility of a small spot of lymphoma in stomach, but the overall message is that we needed the more invasive chest biopsy. It also became apparent that the 1st biopsy was hard to read because the inside of the mass is all dead tissue. This info coupled with the fact that The pain has been increasing, prompted my surgeon for sending me to the ER so we could do biopsy as soon as possible (not necessarily an emergency, but we need to get moving in this process!).

At 715pm last night I went into OR for 2nd biopsy, this time with general anesthesia. The procedure took 3 hours, because they kept having to take out more and more tissue from the mass. When all was said and done, about 2/3 of the mass was removed late last night! I've been awake and slowly regaining independence since 630 this morning (they removed the chest tube that was there to suction out any liquid), walked to bathroom on my own (yay), we're waiting on chest X-rays so I can walk around floor.

The pain was difficult to deal with last night, but now we have it managed with
Combo of IV meds and pills. Current plan is for me to leave today, and for pathology to look at new samples on Monday!

Friday, June 14, 2013

Big Surprise Today - Family in Town!

Still waiting on PET scan results.  I will say I am impressed, because even though it seems like we are just waiting and waiting on someone to get back to me - it is not that way at all.  My oncologist emailed me at 4pm and 8pm yesterday to let me know he had been checking the system and the results were not yet posted.  It makes me feel better to know that he is on it!

I promise I will post when we hear the news, I know many of you are anxiously waiting to hear them too.

I wanted to share something awesome that has happened to me, though.  Last night, we went to pick up one of my sisters from the airport, who was coming in for the weekend.  I was very happy to have her here and thought it would also be great for my Mom.  Well, this morning, the doorbell rang at 6:15am, and my husband said it was a package that had arrived.  A package, at 6 in the morning!  We needed to get up early to have a check up with the doc that first saw me at Urgent Care, and found the mass (yes, I thank him profusely every time I see him - and he'll probably be reading this today - so say thanks to Dr L everybody!).   Anyway, I got out of bed, ready to find out if it was USPS, UPS, or FedEx I needed to yell at for ringing the doorbell this early in the morning (they could have woken up the baby!).  I leave my room, and find my sister and Dad standing in the living room!  I was so excited! They say I had a scared/surprised look on my face, and I'm sure I did!  So, we had hugs and caught up - and my daughter has been having a fun morning with them.  It was a great surprise, and I'm so glad they were able to come out.  My brother stayed home, he's got med school classes and tests to deal with (but hey, some day he will be helping people deal with their tough situations in life, so I figure he is paying it forward).  We are going to have a fun filled weekend, can't wait.

I will post again later soon!

Thursday, June 13, 2013

What exactly is a PET scan?

Well, I wasn't really sure what to expect with the PET scan yesterday.  I assume most of you weren't either!

We got to the Medical Plaza and went to the basement (makes sense that they would want to deal with all the radiation in the basement, huh?).  We got there early, to fill out paperwork and make sure we didn't miss it - I was pretty nervous about missing it!  I had been fasting for 7 hours by the time I got there, and they didn't call my name until about 30 minutes after my appointment.  I was starving!

The tech that helped me was a very nice Mexican guy, who helped me pass the time by just talking about nothing important in Spanish.  He put in an IV on my arm, and then warned me that I would need to drink 2 cups of a gross liquid to help the radiologist see inside my digestive system.  He wasn't joking, it tasted like drinking Mylanta.  I asked whether it was better to sip it or chug it, and he chuckled and said "however you can get through it".  After the fun 2 cups of yucky, thick white liquid, he "flushed" the IV and vein with a syringe full of saline solution to make sure all was set up properly.  It was weird, the minute he started putting the saline in my blood I felt this metal taste in my mouth.  Next was the radioactive sugar, he said, and left the room to go get it.

When he came back in, he was carrying this small metal cylindrical container with a handle, it looked just like radioactive material is carried in the movies.  He then took out this smaller container, which was basically the syringe fully contained in metal, except for the needle and the back plunger.  At this point, I realize what is about to go into my body is NOT GOOD.  He explains that the cover is to help the techs that handle this stuff all the time, and that the amount of radiation they are giving me is really not that big.  However, and this was big news to me, I should probably stay away from any small children for the rest of today.  What?!?!  He said I could hug or kiss my daughter, but that she probably shouldn't sit next to me on the couch, or lay beside me, I shouldn't hold her in my lap, etc.  This was a bummer because my 17month daughter seems to know that something is going on, and has been wanting "mama time" a lot.  Also, we had plans to have our good friends and their toddler come over for dinner, and how was that going to work out?  I figured we would come up with a good plan later in the day and decided not to freak out about it just yet (I'm very emotional when it comes to my baby).

After the radioactive sugar (which I guess is useful because cancer cells metabolize faster than normal cells and basically "light up" on the scans with this combo), I was taken to a dark room where there seemed to be 3 recliner chairs separated with the weird cloth walls from hospitals.  I joked that next time I would bring my kindle, and he explained that NO movement was allowed for the next 45 minutes, because any muscle movement would use up sugar.  It seemed like it took forever, but I thankfully fell asleep.

The next thing I know, a different tech wakes me up, says I need to use the restroom to start ridding my body of the radiation, and hands me cup #3 of gross Mylanta-like drink.  At this point, I am dreaming of cheeseburgers and chocolate shakes!

Next room was the official scan room.  The bed looked like a smaller MRI or a larger CT scan bed, don't know what the best description is.  They explained that I would first get CT scans of my chest and abdomen, then a full body PET scan.  So, I just layed there, took deep breaths when they said I should, tried to relax while keeping my arms in an uncomfortable position above my head, with an IV plugged into my left arm because I was getting a CT with contrast.  I have found it's easier to get through these if I just close my eyes and wait.  The PET scan was odd, basically the machine would move to another part of your body every 3 minutes, the rest of the time there wasn't any noise or anything.  When it was all over, I was laying there (still with my eyes closed) hoping they hadn't forgotten about me.  However, the tech came in, and was nice in helping me get off the bed because by this time my arms were falling asleep!  She said my results should be ready "in a day or two".

After leaving the scanning place, I stopped at a small boutique shop that they have for people going through chemo.  I checked out the scarves and hats that they have available, and a very fashionable girl about my age showed me how to wear them.  I figured it would be less scary to look into that now, before my hair starts falling out (if it does).  I didn't even look at the wigs, I thought that could be another visit.

What else is there to say?  I finally ate!  Pasta seemed like the best idea, and I enjoyed it.  After all the laying down and moving around of my left arm, I was in a lot of pain.  My left arm, shoulder and even neck hurt.  In hindsight, I should have taken my medicine while fasting because they said I could have water and medicine.  I didn't take it because prednisone is rough on the stomach and I thought that would be worse.  Will have to think of a better plan next time I have to fast.  I guess the trick is "TAKE THE PAINKILLING MEDICINE" because it will be worth it.  We made a couple of phone calls (my Mom, Dad, sister, in-laws) on the drive back home, but it was mostly me complaining before falling asleep, while my husband dealt with traffic, poor guy!)

The plan that we worked out was that my Mom would pick up my daughter from daycare and hang out with her all day, I would get home after she was already asleep and then wouldn't have to deal with her asking to be held and having to say no.  Both my husband and Mom came up with this plan separately, and it didn't occur to me at all.  I'm happy to say it worked out, and my Mom loved having an evening/night with just her and her grand-daughter.

It has now been 24 hours since the test, so now I'm still waiting to hear back from doctor's office.  He said to email him (which I did).  I might give it another 30-45 minutes and call his office.  I'm sure there's a lot of people anxious to hear the results, but none as anxious as me!

Thanks again for all your comments, calls, texts, emails and support.  It means the world to me and my family.  I hope to be able to thank all of you individually some day!

Wednesday, June 12, 2013

1st PET scan

Playing with the blog is a great way to distract myself from being hungry.  I need to fast before scan, and I'm starving!  I'll post after the scan. :)

------- after scan ----
I got to eat! We are on our way home now.  There's a lot of traffic, yay.  My left arm and shoulder are hurting, so I took meds and am trying to nap on the way home.  Thanks for everyone checking in, we hope to have results tomorrow, but it might be friday.

And thanks for all those positive comments, we really appreciate them! :)

Tuesday, June 11, 2013

Taking it one day at a time...

Today I had a lung function test which are supposed to measure how much air you can take in or blow out from our lungs and how fast you do it, how well lungs deliver oxygen to blood, and strength of breathing muscles.  Apparently even with my asthmatic lungs I passed the tests. :)

On to the interesting news of the day... My oncologist called, for which I was very grateful because we were getting antsy to hear official biopsy results (since it has been over a week since I got a CT guided needle biopsy).  The doctor explained that after different pathologists, including a hemato-pathologist, reviewed my biopsy sample, they had decided that they would be unable to determine the type of lymphoma I have from those samples.  However, the good news we got today is that they found that my lymphoma was positive for CD20, which could imply that it is a B-cell lymphoma.  The doctor also mentioned that it might point to this being a primary mediastinal lymphoma.  If so, that would mean the cancer is ONLY in the spot where we've already found it.

Now on to the bad news.  I can't start chemo (to kill this cancer!) until we know what kind of lymphoma I have.  We won't know what kind of lymphoma I have from the current biopsy specimens, SO that means I will need another biopsy.  Here are the 2 options as explained by my oncologist. Option 1: if the PET scan that I have scheduled for tomorrow finds another lymphoma anywhere else in my body, the doctors might be able to more easily biopsy the new location.  Option 2: if the PET scan shows there's no other cancer cells in my body (which I hope is the case), then we need to have a more invasive biopsy - where they would cut in between my ribs, and grab a chunk of the mass.

So, how do I feel about all this?  The biopsy was tender for longer than I had initially expected, and it even hurt to try to open a medicine bottle.  I also couldn't gather enough strength to actually open said medicine bottle.  So yes, I'm NOT excited about having a more invasive procedure in the chest area.  However, a couple of weeks ago I was considering having my chest opened up with a saw, so I guess this is way easier.  I think my biggest frustration is that at this point I just want to FIGHT this thing.  I want to start chemo so we can start getting rid of this lymphoma.  I am frustrated at having to wait more, at being in pain and still trying to find the right medicine amount to deal with the pain.  I mostly just want to feel like I'm doing something to prevent the lymphoma from getting bigger, attacking other organs, etc.  In essence, I am having a tough time staying patient.  However, we keep getting good news, and I am infinitely thankful for that.  I will continue to stay strong, and take each day at a time.  If you call/email/text and I don't immediately answer or respond - it is because I'm trying to stay busy and enjoy time with my family.

Monday, June 10, 2013

What kind of lymphoma?

On friday, june 7th, 2013 - I was told that the mysterious mass in my chest is in fact a lymphoma. I knew there was a chance of cancer, we had discussed it and I had gone through a biopsy. However, being told "you have cancer" is still scary. I should note that in many ways this being a lymphoma is good news, because the open chest surgery that the doctors had initially thought would be necessary (and now they believe there's a 99% chance I wont need it, yay!) is risky, and would have a tough physical/emotional recovery period (2 months without being able to pick up my daughter! How to explain that to her?)

It has been a week since my CT guided needle biopsy at UCLA, and we still don't know exactly which type (out of 70) of lymphoma I have. The doctor told us it is a non-Hodgkin's lymphoma, that it seems to be internally aggressive (which is what you want for chemo treatments).

I had an echocardiogram today, because the oncologist wants to make sure my heart is healthy and can handle chemo treatment. Apparently there are some medicines that could weaken the heart, so this is important information to know now. After the test, my husband and I went back to the oncologist's office to see if there was any chance they had finally gotten the pathology report. We were told that the oncologist and pathologist had talked, but we still didn't have a final answer. As I understand it, there's about 70 different types of lymphoma, and the pathologists are working to rule out the different types, and confirm whichever type they think I have. I understand this is a scientific process that could take them some time, but I didn't expect it to be over a week!!! I want to start getting rid of this mass already! As anyone that's ever worked with me knows, I'm not exactly a patient person. Waiting around, not even knowing which questions to ask or which type of lymphoma I should be researching is rough.

Next up (on wednesday) is a PET scan, which is basically a whole body scan to see if I have lymphomas anywhere else in my body. By the time the doctors have the answers from these tests, I hope to have the pathology report finalized so that we can start fighting this mass!

My husband and I are trying to stay positive. My Mom is in town, helping with our toddler daughter, cooking and taking care of us as Moms do. I am currently on short term disability, and I am so very thankful for good health insurance. We're all waiting and hoping to get more information every day - I think it is because we feel like we don't yet truly know what we are fighting.

*** I must note that I am currently taking prednisone to help with the chest pain. This drug makes me pretty hyper, so there's a chance that my "stream of consciousness" blogging is slightly confusing. Let me know in the comments. :)

Tuesday, June 4, 2013

How it all started....

Hello internet! This is my first open blog. I plan to use this site to document what I'm going through, to give myself time for introspection, to hopefully help others that may be going through the same in the future, and (of course) to keep my friends and family updated. I have received an amazing number of calls, texts, messages, emails, and overall support from friends and family. Thank you all!

HOW IT ALL STARTED (written on 6/4/2013)

It all started with chest pain. After nursing my daughter for her first year, I finally weaned her off completely around 13 months. I gave myself a little time to get ready, and then I started going to the gym to a very fun class with friends (dance/ballet combined with cardio). I thought I had hurt myself at the gym, and tried to take it easy. A couple of weeks passed and the pain was getting worse, especially at night. My daughter and husband had a cold, and when I started coughing, the sharp, stabbing pain in my chest was unbearable.

The next day, after going to work and dealing with some meetings I thought were urgent (funny to look back at it now), I went to a nearby Urgent Care facility that I had liked in the past. After confirming that my lungs were clear (which is important since I'm an asthmatic), the doctor asked me if I had a couple of extra minutes, that he had decided to do a chest X-ray "just in case".   When it came back as abnormal (it looked like the area around my heart was swollen), he sent me to get a CT scan. The scary part is that he made it clear he wanted it scheduled that same day. I cannot begin to express how thankful I am to this doctor, for taking the extra step and wonder what else could be going on, for listening, and for possibly saving my life.  I called my husband, who picked up our toddler from daycare and met up with me at the imaging lab. It wasn't a big deal, we got to walk around with the little one, everyone smiling and talking to her. I heard I would get a call that night if they found a blood clot. Also, the doctor gave me antibiotics and prednisone (a steriod I frequently get when a bad cold is messing with my lungs).

A day later, we found out I have a large mass (10x7x6cm) above my heart, and seems to be preventing left lung from fully inflating. I was referred to a cardio thoracic surgeon (scary to think about even calling one of those up!)

Fast forward a couple of weeks, and I've seen 2 thoracic surgeons, both of which think I will need open chest surgery, and a biopsy. While the doctors have explained that there's a chance that I might have cancer, they have reassured us that the expectation for successful treatment at this time is 100%. As one surgeon put it: "this is bad news, but it's not terrible news".  We also saw my pulmonologist, who sat down and gave us a lot of "for medical professionals" printouts detailing anterior mediastinal masses, possible causes, and possible ways of dealing with them.  She also went back and got my last chest xray (from 2007) and showed it to us and explained why it looked perfectly normal.  I feel very lucky to have a great team of doctors looking out for us.

Yesterday, my husband and I spent most of the day at UCLA where I had a CT guided biopsy. It was more complicated than we initially assumed, but things went well.

Now we wait... I'm going to call surgeon's appointment tomorrow (2 days after procedure) to see if they have any info.

I've been incredibly grateful for all the texts, emails, phone calls, and Facebook messages I have received. I also know a lot of people have been praying for me and my family, hoping that we have the best possible outcome.

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31 year old navigating life with husband and almost-2-years-old daughter :)