Done Done DONE!

Well, a long overdue update.  I did end up deciding to complete radiation therapy.  I met with my radiation oncologist doctors, Dr. Michael Hall and Dr. David Parda, and after reviewing my final PET CT scan, we decided that to radiate a small area of the mediastinum (between your sternum and heart) and a small area in the left lung, where the largest spot of disease was.  In my final scan, there was no visible uptake, except for perhaps in the mediastinum, but it’s hard to tell because it’s so close to the heart, which will naturally take up the dye and look ‘active’.  There is no 100% assurance that my cancer is completely gone, but with completing the radiation therapy, my docs are pretty confident we have it at 99.99% chance it’s gone.  So yah, I’ll take that.  Radiation therapy for Hodgkin’s is given at about half the radiation dose used for other cancers, like breast and lung, so the side effects now and long term are less severe.  Short term side effects for my treatment are a reddening of the skin at the radiation site, and a dry cough and sore throat.  I did experience these symptoms, but not until I was actually done with therapy-finished on a Friday, and my body was just worn down from having to drive into town every day and was very fatigued-and I ended up getting a virus that knocked me on my butt for a few days, and with my weakened immune system, the red skin and sore throat and cough appeared briefly, but are all gone now.

I went in for 17 treatments.  Before I started through, I went in for a simulation session.  This is where they fit my body into a sand like cast that molded me to stay in a certain position, so I would be in the same position for each treatment.  They completed another CT scan during this and then spent a couple weeks designing where they would target the radiation.  Once the doctors were pleased with their treatment plan, I started going every day Monday through Friday.   Here are some images of how the radiation would be targeted and then disapate as it moved through my body.

 I worked the whole time during this as well, just taking off in the afternoons to go downtown for treatment.  They finally had a morning spot open up for my last 7 or so treatments.  They see a ton of patients everyday-I think maybe like 50 or so?  My treatments lasted about 15 minutes.  I would lay on my back with my arms above my head.  They put a small mark on my left chest each time and lined me up with the laser grid and then the machine went to work, spinning and humming in different positions around me.  The table I was on is made of carbon fiber, so the radiation would pass through the table and not pick up any elements in the table and pass them on to my body.  Pretty cool stuff.

The radiation technicians were all really nice, most around my age.  They made the experience as enjoyable as possible.  Definitely the easiest part of this whole process.

So, I’m all done now!  No more cancer treatments!  I will go in for PET scans every few months for the next couple of years, and the scans will continue to get further and further apart.  At 5 years of clean scans I can officially OFFICIALLY call myself cured from cancer.  Awesome =)  I’m just working on building back up some vacation time at work, starting Couch to 5k (as Theresa put it-the Cancer to 5k program!) and Brandon and I are looking to buy a house!  We can put the last 10 months of crap behind us and get on with this life.  I am REALLY looking forward to enjoying this summer!

Thanks for following along, friends.  If you don’t hear from me for a while…no news is good news.

Love,

Emily

Over the rainbow, over the moon!

Ok, I apologize in advance for the lapse in blogging and thus resulting in the length of this entry, but I want to get everyone caught up =)
So…I finished chemo!!  My last treatment was the week before thanksgiving.  I flew to Boston to be with my family for the holiday.  What a great time that was.  I celebrated with a few glasses of well deserved wine =)  It was so great to see my family and to thank them and hug them in person for all of their support throughout this ugly process.
December was a very nice, relaxing month.  Only a quick visit to the Dr. for my lupron shot-2 more, just to be on the safe side in preserving my little eggs to hopefully make a baybay in a few years =).
I had another PET/CT scan on January 10th and met with Dr. Raj about a week ago to discuss the results, which were still AWESOME!  There is a number (the Standard Uptake Value or SUV) that can indicate the activity of cells.  The normal range is under 5, with 5 and above indicating a probably malignancy.  My value from my previous reading was 2.5 and this latest one is 2.1, so that is all good =)  I talked with Dr. Raj a bit about the prognosis of radiation and he explained this to me: What I had was considered ‘bulky disease’, which is when a mass is greater than 10 cm in mass, so I did have 1 mass that was just under 10 cm, so they classified it as bulky.  Basically, the chemo can do a lot, but when masses are of a certain size, the chemo can’t chew it all up and so radiation is used to make sure the last bits are killed off. 
The decision to have radiation, is very difficult and one I have been thinking about for several months.  The problem is, there are side effects and risks associated with it.  I know, a giant laser beam seems perfectly harmless (ha!) but it can cause secondary cancers to the other tissues that are affected by the beam (it has to go through my lung tissue obviously, and possibly breast tissue, etc.  They have really improved the technology and the radiation is at a lower amount for Hodgkin’s than it is for other cancers.  But the other risk is, if I choose not to radiate, then what if the Hodgkin’s comes back?  If they do recommend it…hoping they don’t of course (appointment with the Radiation Oncologist this Friday the 27th), I think…I would do it.  For a long time, I was thinking I wouldn’t do it, even if they recommended it.  But the goal right now is to cure the Hodgkin’s so if that means radiation…then that is what I am going to do.  I feel like if I don’t do it, then I am going to be looking over my shoulder for the Hodge every day.  Life offers no guarantees on anything.  I could choose not to radiate and still wind up with another cancer later in life.  But the Hodge is the focus right now.  Anyway, I’ll keep you posted…no…really =) on the meeting outcome.
But otherwise right now I am feeling really good =)  I am deplorably out of shape from basically a year with very little exercise, but I am slowly but surely getting back in shape.  My lung function feels pretty good all things considered…as I keep up with the exercise my heart feels better too…I was getting pretty winded with basic stuff, but I’m sure that is just a product of laziness =)  I have had enough couch sitting to last a lifetime!  I am sooo anxious for spring to be here!  I basically lost my last summer and so I am super ready to go frolicking in the woods again!
Another side effect I noticed was that I was feeling VERY stiff and achy in my whole body.  The mornings were the worst, with my fingers feeling arthritic and my hips not wanting to move.  I would hobble stiff legged out to get a cup of coffee.  Sitting in one position for long periods of time also cause me to freeze up and the process of getting everything moving and grooving was a bit painful.  I did a bit of internet sleuthing and other people were experiencing this after chemo also.  The one thing they found that seemed to help was exercise!  Movement is life people!  So, I propelled my achy body to the elliptical machine and you know what?  After just one work out I noticed a difference in that I was starting to feel better!  Thank goodness!  I honestly imagine that is what an 80 year person must feel like.  YUCK!
In other news, I have become less sensitive to the smells that bothered me while I was having chemo.  For my most recent PET CT and a more recent blood draw from my port, I didn’t gag at all when they had to flush me with the saline!  Yay!  I still notice the greasy smell in the lobby, and I notice it when I go to some restaurants also (sorry Eat-n-park, but this means you), but it doesn’t make me want to blow chunks anymore.  Horray! Haha =)
It was a year ago that this whole crazy ordeal was starting, with a hospital stay following what should have been an out-patient broncoscopy procedure.  What a crazy year it has been.  But I emerge from this welcoming the year of the Dragon, and humbly embracing all that life throws my way.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
Have a good year people!! =)  And thanks again for the love and support…and for listening to all of my ramblings on here.
Oh and PS…my eyebrows have grown back!!!  Woohoo!  And I have a full head of very short dark blonde fuzz that I will debut in a few more weeks…it needs to be long enough to comb I think, before I let it out =)  Oh happy days!
Xoxo
Emily

Chemo 10...getting to the end!

Hit play and continue to enjoy while reading this super awesome blog!!  Also check out those fancy foot moves in the beginning!
HEEEEEY!  So I got super awesome news from my scan…there is NO SIGN OF CANCER!!!  Holy cow, what amazing news.  Dr. Raj showed me my scans from June (which I hadn’t seen before) and my lungs were lit up like a runway.  Now they are completely clear!!  The Doc was pretty impressed it seemed, since there was so much disease and for the chemo to have worked as well as it did.  Yay!

This should be a good sign that I won’t have to do radiation, but that will still be determined at the end of the chemo and by the radiation doctors.  After meeting with the Dr. I went to my chair for chemo 9 and just this past week finished up chemo 10!  Only 2 more to go!  And not a moment too soon.  I am still getting my acupuncture, which is treating all manner of side effects, but I have been getting nauseous and actually sick more these past 2 cycles.  Not fun.  But they give me pills for that too…Compazine, Ativan and Zofran and those do help.  Can’t wait to get back to a normal life…and start taking off these extra 10 pounds I’ve packed on!  BLECH!

Photo by: Bruce Bean

For chemo 10, my brother Kirk took me, which was really nice to get to hang out with him.  He’s been so busy, what with owning his ice cream shop and everything (shameless family promotion on here…gotta love it).

  So just have been resting up at home and waiting out these last 2 treatments.
Thanks for sticking through all this with me.  I meet the Dr. again before Chemo 11.  I'll let you know what's up =)  Eventually, I promise!!
xoxo
Emily

Way overdue update! Chemo's 6-8, ain't it great!

Well good morning again, finally!  Sorry I haven't put anything out here lately, but not too much has changed...just chemo every other week, but blasted through halfway with number 6 and 7 and 8 flew by before I knew it.

As my Aunt Maria said as I started all of this...it's 6 months of shit but then it's over...cancer cured.  LOVE using that word CURED!  So basically the S is starting hit a bit harder these days.  Not just related to recovery time, which was a bit harder after 8, but also it's very draining on the emotions too.  I stay as positive and as happy as I can, not only for myself but for you guys too!  I don't want you to worry about me.  You have all already been so great and your support is just the world to me.  I truly couldn't do this without you...the cards, the hugs, the words of encouragement and admiration.  I know people (especially mom's, dad's and Brandon's) wish there was a way they could take away the cancer, the pain, and go through this for me.  But things being what they are, I've got to be the one run over by the chemo bus on a bi-weekly basis.  But ugh, I can't imagine what going through this would have been like 10 or 20 years ago (side effects were much worse, but they have tweaked the formula and added anti nausea meds that help a lot). Blech.  So anyway, what I am really trying to say right now is as always...thank you.  Thank you in a thousand ways and a thousand times.

But at the beginning of it, I wanted this blog to hopefully help someone else who is going through this.  So, this nitty gritty reality...this is for you...fellow future survivor.

OMG, does it SUCK.  When I walk into the 2nd floor of the AGH Cancer Center, my stomach lurches.  I have become very sensitive to smells, and those that I associate with anything chemo pretty much make me want to hurl.  There is a small cafe in the Cancer Center and it fills up the lobby, and the rest of the floors too, with this stale greasy smell.  For the past couple chemo treatments, I  have held my nose from the entrance until I get up the elevators to the 5th floor, where the smell has dissipated enough it doesn't bother me so much.  But the smell of the lobby, the smell of the treatment room, and this scent of one of the nurses...it's all too much now.  This past treatment, number 8, afterwards I had a follow up PET scan completed a week later.  This is the 1st PET I've had since June and I'll find out this coming Thursday, before treatment 9, what the results are, and if the cancer is all gone...I'll still have to finish chemo, but I don't think I'll have to do radiation.  Radiation as I found out during my consult with my could-be radiation doctors, is a 15 minute procedure, 5 days a week, for 4 weeks.  Good bye month of December =( IF that has to happen.  But so anyway, the PET...another thing that makes me gag is when they flush my IV during treatment with saline solution, which is to make sure the blood doesn't clot in the IV.  I can taste the saline in my mouth, and smell it too when they do this.  GAG.  Well, the radiation guy came in and flushed my IV, GAG, then injected me with the radioactive dye, then flushed me again. GAG.  Well, except I've gotten past the gag stage at this point.  Total pukage.  Which, from the fast, was just water and stomach acid...yummers.  Anyway, wait in dark room for an hour with warm blankets, then slide in and out of the camera tube for 25 minutes.  That done, I set off in search of some coffee and to eat the fruit salad I had brought.  Felt a little queasy as I ate...stomach was still a bit off I guess.  Then I went up to the cancer center for my bloodwork.  Held my nose through the lobby.  Lost my cookies on the 5th floor.  The smell was too much.  I am going to wear a mask to treatment with some essential oils on it and hopefully that will help.  Treatment I am discovering goes better if I keep my stomach full, so it's not just gargling with chemicals.  I gave up that one diet for the thrush pretty quickly.  If what sounds appealing after chemo is mac and cheese...mac and cheese it is.
But, aside from puking, my blood work looked good.  My hemoglobin count had been getting low, and if it fell below 10, I would need another shot to fix it.  11.3 baby!  I had a steak the night before, so that seemed to help I think.
Now, after treatment 7, I had an acupuncture appointment 3 days later, on Saturday.  What wonders this did!  I had no nausea at all, and felt like myself totally by Monday!  Just wonderful.  Treatment 8, I had acupuncture again on Saturday.  I did not get the total recovery this time.  I felt mentally much better, but physically was still pretty weak and was gagging a bit, just at random.  Following that bout at the hospital on Thursday, I called my acupuncturist up and she was able to fit me in that afternoon.  Now THAT was the stuff.  No nausea at all...no gagging even when thinking about the things that make me sick.  It's a beautiful thing.
So yah, the recovery is getting a little harder now, and even though I've completed 8 treatments, the last 4 seem like it will take forever.  At the beginning I was like 12, psssh, I'll be through this in now time.  Time has now started to crawl.  I can't wait to be done with this and to go on to my normal life again, that isn't full of IV bags, radioactive dye, and feeling like crap half the time.  The thought of having to press on for another month for radiation is super depressing, so I really hope I don't have to do it.  If my PET comes back showing full resolution, I don't think I will have too.  Keeping fingers and toes crossed =)
Come November 1st, Brandon and I will have been dating for 2 years, and I'll officially have been sick for half of our relationship.  I know he's ready to move on from all this too.
Oh, as far as other side effects, the neuropathy in the fingers has changed from tingling to a little pain in the tips, and I think my right big toe has a discolored dark streak down it, I think from the chemo cause I don't remember dropping anything on it.  Also, the chemo brain has actually improved from the first couple months...it's really not an issue any more, which is great.  I am starting to loose my eyelashes and eyebrows a bit more, but with a small bit of effort from eyeliner, I'm able to fill in the gaps to nice effect.  Also, nose hair is in short supply, so keeping tissues close by is a must, especially with sniffle season coming on.

I would like to wish all a happy start to Autumn and I'll check back with ya on here real soon, I promise...definitely with the PET results.
lots of love,
Emily

Ketchup -chemos 4 and 5

In a LONG overdue update…Chemo 4 has come and gone as has chemo 5!

Yay!  7 to go…almost half way!  And with the 2 month mark, I had my follow up scans done…just a CT…and it shows that the masses have GREATLY diminished in size. For comparison, the mediastinal (area of chest that separates the lungs and is between the sternum and spinal column),mass previously measured 9.4 x 8.1 cm and is now 5.4 x 4.0 cm.  Whoohoo!  Another precarinal lymph node now measures 1.1x 1.7 where it was previously greater than 3 cm.  The masses in my lungs have decreased also…the largest mass in the upper left lob previously measured 6.6 x 6.9 and is now 4.1 x 3.3 cm.  So yay, super awesome news.  I will have a PET scan follow up after the 8th treatment, which will show how much of those masses remaining is scar tissue and how much (if any) left is still lymphoma.  The PET dye targets active cells, and as cancer cells are more active, they show up highlighted on the report.  The masses themselves can leave some scar tissue and it is also a side effect of the bleomycin, the B of ABVD.
Side effects pretty much the same…queasiness following the treatment for about 4 days.  Fatigue, but that is getting better.  I don’t know if I mentioned previously, but I am also receiving acupuncture treatments.  I go about once a week and the acupuncturist puts needles at different points to help the flow of Chi/Qi through the body’s meridians or channels. Points can target symptoms or functions or organs of the body.  I SWEAR by the points for constipation.  Also, as my kidneys are taking a beating with the chemo, she does points to support those as well.  In my last visit, I mentioned that my whole body had been very stiff, muscularly.  That day I had also taken a long walk, which, based on the sporadic exercise I have been doing, would have had me the next day super stiff and with shin splints.  I felt a deep achey feeling on the point that she hit, which she said is a good indication of taping into the Chi flow.  The next day, I was limber and feeling so much better than the day before.  Really amazing stuff.  The ‘she’ I mention is Susan, owner of Confluence Healing, Community Acupuncture & Herbs.  A very cool aspect is she operates on a sliding scale for treatment, requesting $25-$45, making it so that it is affordable for everyone. www.pittsburghacupuncture.net
I have been receiving so many wonderful cards and notes from friends, family and co-workers.  I am very touched.

3rd Chemo

Good day all, sorry for the long wait between posts.  I had my third treatment on July 14. 

3 down!  How u like that wig?  Cute colors, feels like me =)

There really needs to be a better word than 'treatment' because it really is no treat.  This one really put me down a bit longer than the other 2.  I had been so hopeful feeling so good following the 2nd treatment, but this one was a bit harder.  I believe that maybe the drugs are starting to build up in my system and thus it is taking longer for me to recover?  Not quite sure, I'll ask on this Thursday when I go in again.
So, as I mentioned before, the chemo is systemic (it goes through the whole body, not localized) and an early side effect is Thrush, a flare up of a fungus called Candida, which we all have a little bit of in our mouths, but the chemo causes it to really go out of whack.  There is a diet I tried to keep it at bay...no gluten (pasta, potatoes), fruit, sugar, sweetener, dairy (Nooooo!!!)).  So I am super hungry usually following treatment and I decided to go for a salad...didn't have any protein, which was probably a mistake.  As usual, I was super tired and was pretty nauseous that evening, enough to take some of the anti-nausea meds they had given me on week 1, Compazine and Ativan.   I guess they helped.  Anyway, I don't think the salad was a good idea, given that the thought of roasted red peppers and hearts of palm make me want to...well, you know :-S  I'm going to try rice milk and rice cereal this time and see how that goes.
So, at any rate I was really not feeling my best again until about the following Wednesday, whereas after the previous treatments I was pretty much okay by Monday.  I had my blood work done on Thursday and my WBC's (white blood cells) were good, but this time my Red's were off the low end of the spectrum.  That Neulasta shot I get is just for the whites.  Hopefully, I won't need the shot for the RBC's, as I hear that is a stinger.  A low RBC count can cause fatigue, weakness, headache, dizzy or lightheaded-ness.  I was experiencing fatigue and was a bit lightheaded at times.

Oh, a little something about the phenomenon of 'chemo brain'.  I was a bit forgetful to begin with, but I have noticed a change in really struggling to find a word sometimes, or while speaking, in the middle of a sentence, completely forget where I was going with it.  Again, I've done that before, but I notice it is happening more frequently now.  I can recover and find words and thoughts again, but it takes a minute.  It's a bit disconcerting, but hopefully it doesn't get any worse.  Also, my typing has gone down hill quite a bit, probably a combination of the neuropathy and the chemo brain.
So again, I'll say I am thankful and blessed as the side effects I have experienced have been completely normal and the severity of them is pretty mild.

On the ME side of things, that don't include cancer, it's peach time out at McConnells' Farm in Independence Twp, PA.  I'll stake my big toe on the fact that you have never had a better peach than that from my dad's family's farm.  So if you can, get out there and enjoy, I know I am (candida be damned, there are important things in life)!  Also, have enjoyed 2 screenings of the last Harry Potter movie with good friends Kirsten and Patty, as well as Horrible Bosses with my buddy Christy.  Also, a Happy Birthday to my sweet cousin Ashley and my love, Brandon.  Lots of good things going on, and I am thankful for them all.  And all of you, my wonderful readers and cheerleaders.  I get a follow up scan after the next chemo...not sure if it will be that day...probably the week following.  I'll keep you posted =)  Hodge, we're coming for you!!

Hair Shaving and Chemo Treatment #2

A bit delayed on this post, my apologies.  By now, many have seen the new 'do so without further ado...

It was a family affair, the shaving of the hair.

The stylist prepares her first cut.

Gosh, I sure am happy about this whole thing!

Taking down the right side first...

Then the left.

Then, a little clean up in the back.

Flock of Seagulls, flying backwards.

Time to put the hair UP!

Dig it, right?

We do, too.

Really, if you have to lose your hair, and can have some say over when and how...have fun with it.  Have fun with this whole stinking process.  I was so happy and grateful to be with my family during this time.  We had a blast.  I rocked out the mohawk for the 4th of July picnic.  Really, a good look for me, I think.  But, it's really more of a day look...like...a one day look.  Anyway at the end of the party, it was time for the rest to go.  ::Sadface::

Ready.  Set.

Go!

Going...

Going...

 

 

 

 

 

 

 

 

 

 

GONE!

Yes, it is a sad, disturbing process when your hair starts to come out.  It is okay to acknowledge this.  Acknowledge all of it.  Face that cancer and say,' Yeah, I'm taking you down'.  But those sad and scared moments are real too.  And there's nothing wrong with those.  I choose not dwell on those and just aim to be happy and well each day.  It's working quite well.   I only had smiles and laughs on the day my head was shaved.  I was ready.  It was on my terms.  And I had great people all around me.

So, I am fully embracing Bald is Beautiful:

Ooh, and you can see my port, on the left side of my chest.

But, for those of you guessing on the wig...

Ta-DA! #6

I went with Sean's Signature Salon in Sewickely for the convenience to my location, and the service I received from them was certainly top notch.  I have this ordered in a different color, but they were kind enough to give me the one in the shop on loan until I could get mine on the 12th.  It doesn't usually take that long, but Sean was out of the salon this past week. It is pretty comfortable for the most part, but I do get a headache if I wear it all day at work.



So as you might be able to tell, I have been feeling pretty darn good.  The side effects from the 2nd treatment were MUCH more manageable. Still got tired very easily the first 3-4 days following treatment.  Had a bit of thrush in the mouth, so continuing to take some anti-fungal meds.  Fun.  I did see something online for a diet to follow to mitigate the occurrence of thrush.  Looked pretty bland.  And no fruit or dairy, which is probably what caused me to have it in the first place.  Fruit was the one food I was craving the first few days following the treatment.  I'll try to stave that off for the next treatment and see if that helps.  Bone pain was just an ache this time.  Annoying and twitchy feeling, but not even bad enough for me to take any ibuprofen.
Day 7,  blood work looks good...my white blood cell (WBC) was up from 4 to 6.7.  Hemoglobin= 11.4, Platelets, 256.Great website for understanding blood work.
Met with Dr. Raj and went over the side effects I was experiencing and he thinks that with the improvement in my breathing and strength of voice that the chemo is working well and we are on the right track.  I will have a follow up PET-scan after the 2nd cycle ( 2 more treatments) to see what the masses look like then and determine the further course of treatment.

So, all in all, doing very well.  I'll check back in in the next few days.  Thanks for all the great comments, too!  They always brighten up my day.

Stay classy,

 E