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This is cancer, this is chemo

February 11, 2017

Wow!  It’s been quite a while since I’ve blogged.  Life has been a little crazy trying to get my old condo fixed up and rented.  Now that things have settled down just a little, I am going to try and catch up on some blog entries that I’ve been wanting to finish.

While I’m sure there is a part of me that wants to forget this entire experience...I think it’s important for me to blog about it hoping that it might be helpful to someone else who is going through this treatment.

I’ve often been looking at my calendar to see “what was I doing one year ago”.  At this time last year I had just officially finished my last drip of chemo and roughly speaking had finished my 6 cycles of escalated BEACOPP treatment.  I remember taking a picture of myself and immediately thinking...do I want to keep this?  Should I delete this?

Well I decided that I did want to keep it.   I didn’t want to forget what it looks like at the end of chemo, so here they are.

This is what chemo looks like (pictures taken on 2/11/2016)...

Cancer cells are “fast-growing” cells, so chemo attacks all fast-growing cells including the “normal fast-growing” cells which includes things like cells for hair, heart, lungs, GI, finger nails, etc.  I’m smiling but that is mostly just me trying to stay happy.  I guess in a way I was happy, though, happy to be done with the treatment and start healing.

The total loss of hair is from the chemo drugs.  While I’m sure new treatment options are on the horizon...the current approach is “kill all of the fast-growing cells”.  Obviously this (hopefully) kills the cancer cells, but it takes all of the other normal fast-growing cells with it.  The idea is that once the treatment is over, the normal fast-growing cells start growing again and the cancerous fast-growing cells do not.

The puffiness and “moon face” look is mostly from the 80mg of Prednisone (an oral steroid) that you take for the first 2 weeks of every 3 week cycle.  If you’ve ever taken it...you’ll know that it’s A LOT!  This helps keep you “propped up” as the chemo is tearing you down.  Also you get pumped full of a lot of fluids in order to get the chemo into your body.

This was me diligently trying to capture my last 2 eyelashes.  The others fell out shortly thereafter.  Lol.

And here is what cancer looks like...

So you might be saying “wait...what?”.  Yes....the picture of me in the tie was taken on 8/28/2015 at my cousin Brandon’s wedding.  It was about 3 weeks after I got the chest x-ray that indicated I “probably” had lymphoma.  The biopsy surgery to confirm that it was Hodgkin’s Lymphoma was done very shortly after this picture was taken.

In addition...I probably had been at Stage 4 of this disease for 4 months prior to this picture being taken.  The reason I say that is because I have notes indicating that I was having hip pain since May 1st of 2015.  In order to be Stage 4 you have to “have affected lymph nodes above and below the diaphragm and it has to have spread to an organ such as the liver, bones or lungs”.  In my case the chest was the initial site (thus my minor cough) and it spread to the bone in the hip.

So what is my point with all of this?  Well a few things really:

You can’t always “see” cancer.  It can often “look” like nothing, but do pay attention to the signs of it.  Changes in your body, etc.

Chemo is rarely pretty, but if you are about to go through it, are going through it, or have just gone through it...be prepared to check your vanity at the door.  You only have one concern and that is BEATING THIS AWFUL DISEASE.  Stay focused on that.

Sometimes the things you don’t want to remember are the things you shouldn’t forget.  The brain has a way of protecting you when the body is going through trauma.  I found it helpful to write about these things and blog about them either at the time or later.

[brianchi73-blog]

July 23rd, 2016

This is a video recording of a Lymphoma Panel Discussion that I went to on June 30th, 2016.  It was amazing to see this great team of Doctors, Nurses, Researchers, etc.

The guy who is moderating is my Oncologist Dr Leo Gordon, the Director of the Lymphoma Program at Northwestern University Feinberg School of Medicine and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

If you are a medical nerd then you might want to watch the entire video.

If you are a layperson like me....you might be interested in fast forwarding to the 1:27:52 mark to hear the conversation about working with the pharmaceutical industry.

The link to the video is at the top of this post.  Play around with the options on the top right to get the window with just the video. Ironically you can change your browser’s zoom to a lower % to make the video larger.  Who knew?!  

Proud of this Northwestern team! Enjoy.

[brianchi73-blog]

From Fighter to Survivor

March 9th, 2016

Here are a couple of entries from my journal of this experience...

I just got the call at 5 PM today from Betsy, the Nurse in Oncology, who shared the good news with me.  The PET and CT scan that are used to confirm this were just done at 8:30 and 10:15 this morning, so it is nice to get the information before the day is over.

Obviously this is exactly the news that I wanted to hear today, but I was prepared (as prepared as I could be) for anything.  The escalated treatment that I went through has a high success rate, but as with most things in life...no guarantees.  Because I still have some residual annoyances from the areas that were treated....I really was not sure what was going to happen today.

Also there was the possibility of having to repeat the thoracic biopsy surgery that I originally had IF the PET scan showed activity.  The biopsy surgery would have been done to verify if the activity was real or a false positive.  THANKFULLY that won’t be necessary as the PET scan showed no metabolic activity.

Complete remission does not mean “cured”, but it is the best condition that you can be in after undergoing treatment.  There is no way to check every cell in the body to see if the cancer is gone.  Because of this I will be doing checkups with Oncology every 3 months including a CT scan every other visit to compare today’s baseline scan with future scans.  The first 5 years after treatment are the most critical in terms of the possibility of recurrence.  I debated whether or not I should even mention that in this post, but I thought it would be worthwhile to explain what remission means.

Now I can get on with “healing”.  I am still struggling with some of the side effects of this treatment, and I’m looking forward to those getting better with time.  They said that it could take 5-6 months to get my energy back and for most (hopefully all) of the side effects to go away.  I’m still going to do a post about side effects to help future cancer fighters, but in the meantime I’ve been too busy having the side effects to post about them (I’ve been keeping a list though!).

Again “thank you” to everyone who offered support to me from diagnosis to remission and continuing support through this healing process that I’m going through now.  A special thanks to my parents for being there today to support me as I received the news today (and I know that my sister, who has already visited several times during this process, wishes she could have been here too).

Finally....I have a few more blog posts to do.  I’ve been making notes about blog posts as I think about topics.  Oh and there will be some more charts, so don’t worry nerds.  And one more thing...........

Time to celebrate!

[brianchi73-blog]

One week from today...

March 2nd, 2016

...is going to be a very big day for me.  I’m doing my follow up CT-Scan and PET Scan that will show the final result of 6 cycles of chemo.  The last scan was done at the end of the 2nd cycle.  You can see my previous post about those results which showed very significant improvement in my chest and a complete response in my hip.

One month ago was the last chemo infusion...an emotional day for me and my parents who were there for it as they were for so many of the infusions.  The next day was a blood transfusion which made for a total of 11 pints of blood transfusions over the course of my treatment.

One week ago was the follow up appointment with my amazing Nurse Practitioner, Betsy, where she did the usual check up and also went over what will happen over the next several months and years.  She said it can take almost the same amount of time to get my energy back as it took to go through the chemo treatment (about five months).

I would be lying if I said I wasn’t at least a little nervous about a week from today.  There are many moments when I forget about it because I get busy with other things...work, what I’m going to cook or get for dinner, etc., but obviously not a day goes by when I don’t think about it.  When I have a random cough or a little bit of soreness in my hip...yes...it gives me pause.

That being said I do believe that a week from today, or maybe the day after that depending on when the results are back, that I will see NED (No Evidence of Disease).

So...please pray for me, think about me, light chalices for me, cross your fingers for me or whatever is your way of showing support!

[brianchi73-blog]

The Kindness of Strangers

February 15th, 2016

When I made my post “The Kindness of Friends” you might have thought....”hmmm...isn’t the phrase The Kindness of Strangers?”.  Well the chemo drugs haven’t totally fried my brain.  :-) I was going to follow that post with this one so that it would make sense, but I thought my “last day of chemo” post was okay to sneak in the middle of these.

Now...”The Kindness of Strangers”.  Well I can’t really say “strangers”, but in this case I am talking about people that I don’t know very well or people who I may have never met but are friends of family, friends of friends, etc.

Back in September I started sharing the news of my diagnosis with a couple of co-workers and eventually more and more.  I had been at Blue Cross for less than a year when I was diagnosed.  When I started working at BCBS I had read about a program where you could donate PTO (Personal Time Off) to a co-worker in a special circumstance like mine.

I had completely forgotten about that program when someone at work reminded me of it and encouraged co-workers to donate.  I received over 200 hours of PTO donations, and I was absolutely overwhelmed with gratitude.  I’ve never been someone who cries very much....I don’t know why...I just don’t, but this almost (but not quite) moved me to tears.

This came at a very critical time because I had just learned that my diagnosis had changed from Stage 2 where the treatment is one day every other week to Stage 4 where the treatment is five days out of every three weeks plus a higher risk of infection (aka hospital stay) and much higher need of blood transfusions (aka more time off required).

Again...I fear that I’ll forget someone or leave someone out if I attempt to list exactly “who did what”, so I’ll try to keep it mostly “what”.  Some examples are a friend’s mother’s church who sent several uplifting cards from different parts of the country, an RV group that my parents belong to who sent cards of support and made financial donations to help me cover the parking expense of several trips to the hospital (which cost between $11 and $24 each time you go), and many, many, many family and friends whose churches, etc. added me to their prayer lists, etc.

So to the “strangers”...I say “thank you!!!”.

[brianchi73-blog]

Last day of chemo...what now?

February 3rd, 2016

Today is my last actual chemo infusion and yesterday was the last day that I had to take chemo pills.  This day seemed years away when I started treatment in October.

I am really excited but you probably wouldn't get that sense if you were around me today.  My mind and body are at odds with each other.  It's just part of the treatment as the side effects seem to last longer in these later cycles.

I'm just over 1 week into the final cycle which is 3 weeks long, so I'm still looking forward to being "finished".  I finally got some rest but I'm still weak and probably will have a blood transfusion tomorrow or soon thereafter. This has been the case in almost every cycle at this point.

After the remaining two weeks of this cycle there will be about a month of waiting before getting a CT-Scan for results.  It reminds me of the waiting to get a diagnosis (x-rays, tests, surgery, results, etc.) except this wait will be a little longer.

So I said all of that to say that I'm happy that the end of treatment is near but there's still some significant part of the journey left including the most significant which is the results from the scan.

Staying on this escalated treatment the entire time has been rough, but it has the best rate of success and I do believe that it will prove to be effective.  At some point I’ll do a blog entry about the side effects I’ve experienced (not everyone experiences the same).

Also life goes on (work, bills, etc.)....all the things that were there before this started are still there during treatment.  Thanks to the support of family, friends and survivors it has made (and continues to make) the process much easier than doing it alone.  A very special “thank you” to my parents for being here when I needed them (taking me to the hospital, cooking, cleaning, fixing things, coming and going when I needed that, etc.).

I know this post is somewhat random and all over the place!  lol.  Anyway...just putting thoughts on “paper”.  I’m happy this day is here even though it’s a little hard to express!

[brianchi73-blog]

The Kindness of Friends

January 8th, 2016

Let me just start by saying that I have some amazing friends!!!  I was going to make this blog entry some sort of who/how about specific friends and how each has helped.

As I started to make a list I realized my fear that I would forget someone and that was becoming evident by my internal conversation of “oh yeah..and she/he also....”.  So I decided to take a different direction with this post by talking about HOW my friends have helped without specifying who (you know who you are!).  :-)

Before I start I just want to say that all of these approaches were/are helpful. Different friends interact with me in different ways and that is what makes each friendship unique.

Giving me space

I have a handful of friends who did not contact me for a couple of weeks after I first informed them of my diagnosis.  Each of them said that they wanted to give me some time before they contacted me.

This was incredibly helpful as I was getting prepared for appointments, surgeries, medications, FMLA, time off from work, work from home, etc.  Also just hearing things like “I’ll/we’ll be here when you’re ready” gave me great comfort in knowing that my friends were there and ready to help but that there was no rush.

Communication

I have received and continue to receive cards, emails, text messages, Facebook Messenger messages and I even talked to a friend on the phone (imagine that!) about her husband’s battle with cancer.  These range from inspirational quotes to “just thinking about you” to conversations about how I’m feeling or how to help.

Stuff

Yep.  Good old fashioned stuff.  On my last day of work at the office they gave me a gift bag with a lot of goodies and a blue blanket that has come in very handy.  I have a really cool mask to protect me from germs.  A coloring book with crayons, a journal, t-shirts, hats, etc.

A friend, whose mother is a cancer survivor, sent me a blanket which was lent to another cancer fighter/survivor for her treatment and now the blanket is spending time with me. It has been prayed over, blessed and carries the strength of the other survivors who were comforted by it during their treatment.  What a blessing and honor it is to have this in my care for the time I have with it.

Food!

Something that I and my friends are very passionate about.  This is tricky during chemo for a couple of reasons.  Since chemo works on fast acting cells (like cancer) it also affects normal fast acting cells (like hair, fingernails and....taste buds).  Sometimes this means that food just doesn’t have much taste or sometimes it can taste metallic or very salty even when eating sweet foods.

Also with the escalated BEACOPP treatment that I am on there is a chemo drug called procarbazine that requires a low-tyramine diet because certain food can actually increase the effectiveness of the drug to a dangerous level (like a stroke although it is probably uncommon and just depends on your reaction).  Basically no aged cheese or aged meats, no fermented food, very little chocolate, etc.  Also for any cancer fighter undergoing treatment....no sushi.  Ouch.

Nevertheless there can still be random moments of joy in eating since your taste buds change through the 3 week cycle usually being at their best at the end of one cycle and at the beginning of the next cycle when you’ve been off of the meds the longest.  Oh and the fact that my treatment falls during Restaurant Week(s) will be one of my biggest grievances when I look back on all of this!

I’ve had friends actually research the low-tyramine diet and make me dinner, take me out for meals or let me know that I can eat something that I thought I couldn’t (like mascarpone cheese....what joy!).  I’ve also had friends bring food at what might have seemed like a random time yet turning out to be the perfect time.  For instance a neighbor brought a cooked meal up and it turned out to be about an hour before I had to take a trip to the ER (thankfully my only trip).

Overall, though, it’s the camaraderie, the ritual, the comfort that comes with having a meal with a friend (or friends) in a time like this that I so appreciate.

Finding ways to help

There are so many things to list.  Visiting during chemo infusions or blood transfusions, offering rides to/from hospital, being there for surgery or critical appointments, offering to visit when I was in the hospital, going for walks, researching therapies, offering personal training, praying, thinking of me, lighting chalices, bringing a delicious cake on my birthday when I had to be in the hospital for chemo infusion and blood transfusion, and more that I cannot possibly list them all.

Notice that many of those said “offering”.  There have been a lot of times when I try to make plans but end up not being able to do anything.  My energy level can be really low one day and normal or even high the next.  Sometimes it’s just a matter of someone asking to help at the right time or right place.  What I appreciate most is the offer to help even though I’m not always in a position to accept.

It’s not all about me

You would think that if it was ever all about me it would be now.  ;-) Well I have to remember what one of the cancer survivors told me...that it would potentially be harder on my family than on me.

I would say that could be true and might be the same for some of my friends.  In some cases I think it might be impossible to process so some friends have just withdrawn and that’s okay too.

So I just wanted to throw that out there and let everyone know that while I appreciate everything and all of the help....that I do keep in mind that this has an effect on those around me as well.

You guys are amazing and I am thankful and love you all!

[brianchi73-blog]

Hodgkin’s Cancer Survivors

January 6th, 2016

Hello!  It’s been a while since I’ve posted something but now I’m starting Cycle 5 which means I’m back on the steroid (80 lovely mg of prednisone), so I’m going to take advantage of this extra energy while I can.  Actually I’m writing this blog entry during infusion. :-)

I was going to title this blog entry “Angels” based on the wonderful organization “Imerman Angels”.  I consider myself surrounded by many angels though (family, friends, etc.), and I wanted to talk specifically about Hodgkin���s cancer survivors who are there for cancer fighters like me.

In the order I met them...Noreen K, Greg S, Chris C and Rafal B.

Noreen

My co-worker, Sy, introduced me to Noreen.  She is a wonderful and amazing person who was diagnosed with Stage 2B and went through ABVD treatment (every other Friday for 6 month) at Northwestern in 2011. Her Oncologist and Nurse were the same as mine (Dr Gordon and Nurse Practitioner Betsy).

Noreen was my first point of contact with a Hodgkin’s cancer survivor, and we met for coffee before I started treatment (actually before I got the results of my PET scan when I thought I was still at an early stage I-II diagnosis).  She was so thoughtful and helped answer all of my questions and shared her experience.  She also gave me a nice cookbook and bought me a nice deluxe pill box for managing medications.  I wanted to share her blog link here and an awesome video of her last day of chemo.  Enjoy hers because if I make one it will certainly not be as entertaining!!

http://nononator-takingdownhodgkins.blogspot.com/

http://youtu.be/ONoecNVTgiw

Greg

I met Greg via Facebook after my brother-in-law, Jack, mentioned that one of his friends and co-workers is a Hodgkin’s cancer survivor.  Greg was diagnosed with Stage 3 and went through ABVD treatment (every other Friday for 6 months) in Dallas, TX.

Greg was the first survivor that I talked to who had an advanced stage III-IV diagnosis.  In Hodgkin’s the stage is not AS important although it does still carry some weight.  It gave me some reassurance to talk to a survivor who had an advanced stage diagnosis.  Also Greg gave me some great advice about letting friends and family help if it makes things easier and to not be shy about asking for meds to help with side effects.  He also encouraged me to pray. I’ll be honest that I feel like I have a good spiritual life but prayer wasn’t a big part of it.  Not surprisingly those things change when faced with such a disease that wants to do battle with you!

Chris

I met Chris through Imerman Angels.  Imerman is a great organization that I had actually heard of through my friend Joanna who had volunteered there.  They help connect a cancer fighter with a cancer survivor and match them up on fairly specific criteria.  For instance Chris was diagnosed with Stage 3B and went through escalated BEACOPP (Day 1-3, 8,9) on a 3 week cycle for 4 cycles and base/standard BEACOPP treatment (same schedule with a decreased dose) for 4 more cycles at Rush in 2010.

Chris helped me in several ways including many “pro tips” like getting a lot of sleep.  This is important because the 2 Ps in BEACOPP stand for Procarbazine and Prednisone.  Procarbazine is a chemo pill that you take for the first 7 days.  Prednisone (previously mentioned at the top of this post!) is a steroid that you take for the first 14 days and it’s a pretty big dose at 80 mg).  It makes you hyper, kicks your brain into gear and makes it hard to shut down at night.  Because of that you really have to try and sleep even when you don’t feel tired.

Also Chris was the first survivor I met where part of his treatment was escalated BEACOPP which is the same treatment that I am on.  I was able to ask him some very specific questions about the treatment including specifics about the tyramine diet which is required when you are on procarbazine.

Rafal

I met Rafal completely by accident (or fate?) when I went in for the 1st day of my 3rd cycle at Northwestern.  On the first day of each cycle you meet with the Doctor and Nurse. Rafal (who lives in Bermuda...lucky guy!) just happened to be there for a check up on the same day that I was there and Nurse Betsy introduced us.

Rafal had the same diagnosis and treatment that I had/am having.  He was diagnosed with Stage 4 (advanced stage) and did escalated BEACOPP (Day 1-3, 8-9) for 6 cycles in 2012 at Northwestern.  He has shared tons of valuable advice on various topics like side effects, understanding that this can be harder on my family even than it is on me, and sharing how this entire experience can change a person including how it changed him.

He also told me about how he was counting his eyebrows during the final cycles (which is what I’m doing now!), but as you can see from his current picture everything grows back.  :-)

So thank you, thank you, thank you to all of these survivors who help fighters like me.  You are angels!

[brianchi73-blog]

Make that a 5 night hospital stay...

December 5th, 2015

I’m finally doing an update here because I’m finally getting to leave!  What I thought would be one night in the hospital turned into five.  I was going to do another post but each day I thought I would get out and then no.

Each cycle of my chemo knocks your white blood cell counts down to almost 0 (such as 0.1) and then you get a shot to kick them back up.  When the counts are low it allows bacteria/bugs to take over in what would normally be under control in a healthy body.

For cycle 1 and 2 I had no problems but a little bug called bacillus took over during low counts with cycle 3 and that’s how I ended up here. It takes a couple of days to test the blood to determine the bacteria and a couple more to find antibiotics that it will respond to while you’re getting broad-spectrum antibiotics in the hospital thus the five days here.

Also can I just say that several things about being in the hospital after dark remind me of Hannibal.  For instance....me, the view out the window, a dark hospital room, etc.  Even the menu is called the “great living menu”.  Didn’t Hannibal have a “living wall” in the TV series?

So this was my home for 5 days and I will not miss it.  It was also my office for 2 days while I did work from hospital instead of work from home.

As usual Northwestern did a great job of taking care of me.  I’ve never spent even one night in the hospital but after five nights I can tell you that I can’t wait to get out and breathe outside air again. I can also tell you that I never want to go to jail or prison.

Thank you for all of the prayers, thoughts, positive energy, good vibes, etc. Time to pack my bags!

[brianchi73-blog]

Hospital Overnight Stay

November 30th, 2015

This post will be pretty short. I woke up this morning with a fever and barely able to get out of bed. I also had bad stomach cramps for other reasons for which I probably should not go into too much detail. Finally after 13 hours I am feeling a little bit better. I had to come to the hospital for blood work and now I am getting antibiotics to keep infection away. This is what happens when your white blood cell count is 0.1. My Oncologist wants me to stay in the hospital overnight so that they can keep an eye on me. I appreciate any prayers, thoughts, etc. for a speedy recovery.

[brianchi73-blog]

Pain in the Neulasta

November 28th, 2015

One of the many side effects of chemotherapy treatment is that it makes your white blood cell counts drop.  Chemo works by attacking fast growing cells, like cancer, but other fast growing cells are also affected because it doesn’t know the different.  These include cells like hair, fingernails, white blood cells, red blood cells and some in the heart and lungs.

My treatment is 6 cycles where each cycle is 21 days.  In each cycle I have a treatment on day 1, 2, 3 and 8.  By day 8 my white cell counts have tanked to about 0 or 0.1 where a normal count is between 3.5 and 10.5.

Enter Neulasta.  This is a shot that I get on day 9 that makes the body kick off the production of white cells.  This growth of white blood cells happens in the bone where there is no room to grow and causes QUITE a bit of pain which could be in the lower back or legs.

The first time this happened to me I ended up in the ER because I had no idea that the severe pain was from the shot.  Now I manage it with Claritin, Ibuprofen and Tylenol but I can still tell the pain is bad if I don’t stay ahead of it.

The chart below shows how the Neulasta shot helps to give me a boost for at least a week or week and a half of the 21 day cycle.

The first time I got the Neulasta shot I had to go back in to the hospital on Day 9 which means more time off from work and another $11 parking fee just for a quick shot.  Grrr.

Northwestern has recently adopted a new technology called an OBI (On-Body Injector).  This little gadget can be attached to your body on Day 8 when you are already at the hospital.  It goes on the back of the arm or on the stomach and gives you a little stick (no worse than a finger stick for blood).  It then leaves a little catheter in you and injects the medicine 27 hours later over 45 minutes and when it’s done you take it off and return it to the hospital.

Here’s a picture of the OBI on moi.

I would say that off all of the side effects of chemo (nausea, tiredness, etc.) that the pain from the Neulasta shot has been in my top 2.  I’ll do a different post about the other side effect which also has to do with another low count.

Sorry I couldn’t make this post more fun but there’s not a lot of animated gifs about Neulasta and On-Body Injectors!! :-)

[brianchi73-blog]

Pet Scan - Updated Results

November 19th, 2015

Hey everyone. I got my PET scan results a couple of days ago, but I wanted to get the new images to post before/after too.

I got the results from the Oncologist. He is happy with them (as am I) and things are heading in the right direction. The cancer in my left hip is showing NO activity now, there's nothing new in the chest and what was there is either shrinking or showing no activity (like the areas that were already small).

This is REALLY GOOD NEWS!!! The Oncologist is going to keep me on the escalated treatment for the rest of the time but I will be doing a total of 6 cycles instead of 8 cycles (because it's less toxic), so I should be done around the beginning of February instead of the middle to end of March.

Thanks for all of the support and please keep the prayers, good thoughts, etc. coming. :-)

Old on left and new on right. My heart shows up brighter on the right but it doesn't mean anything in terms of cancerous cells. The big change is all of the bright areas that are gone from the middle chest and off to the left. 😀

Old on left and new on right. You can see that most of the activity under my throat area is gone.

You guessed it...old on left and new on right. The two areas to notice are the 3 dots on the shoulder (this is reversed so that's really the left side) and the hip.

[brianchi73-blog]

PET Scan

November 11th, 2015

I have unfortunately learned a lot about what CT scans, CT scans with contrast, PET scans, etc. are used for.  For detecting active cancer cells a PET scan is far superior to a CT scan.  With a PET scan you are injected with some radioactive sugar and wait about an hour before getting scanned. Mmmmm....radioactive sugar....

Active cancer cells will “eat” the radioactive sugar and therefore show up on the PET scan.  A CT scan will show where enlarged lymph nodes exist but might also show where they existed as scar tissue after treatment. I know that Halloween is over, but here are some PET scan images of me from 9/25/2015.  These are the images that confirmed activity in my left hip, moved me from early stage to advanced stage, and changed my starting treatment to eBEACOPP instead of ABVD.

Me looking away...you can see the active, enlarged lymph nodes in the chest (mediastinum) in the center and left of center and also in the left hip.  As for the other bright areas...I was thinking a lot and I had to pee?  I dunno.  :-)

Me looking forward...active, enlarged lymph nodes in the chest/trachea area which explained the cough I was having.  In the second image you can see the left hip involvement (and left shoulder).

Soooooo....I have been through 2 cycles of 6 cycles on eBEACOPP where e=escalated.  Just before my 3rd cycle they are going to repeat this PET scan to see what it looks like.

That PET scan will be this Monday, November, 16th.  Please send your prayers, thoughts, good energy, etc. my way.  I’m expecting the most boring PET scan ever to show a COMPLETE RESPONSE to the chemo with NO INVOLVEMENT.

Thanks everyone!!!

[brianchi73-blog]

Family

October 2nd, 2015

It’s one of my favorite scenes in the TV show Arrested Development, and it happens in the first few minutes of the first episode of the first season.

I can’t even BEGIN to tell you how important it has been to have so much support from my family.  It’s not that I expected I wouldn’t, but I think it’s important to SAY it.

I remember making those calls to my parents and sister.  “I have some news....not good or bad at this point...let me just say it and then I’ll explain...I MIGHT have cancer”.  No parent or sibling wants to hear that.  As time went on and I get more tests and a diagnosis those calls just got more definitive.

My parents live in Oklahoma and are retired and my sister is in Texas with her family who are all busy with the usual family activities (work, school, etc.).  I am lucky that my parents are in good health and able to travel, etc. I remember them saying “you know we’re going to be there for your treatments if you want us to be there”.

That was a big relief especially after finding out that I would be going for treatments 4-5 times every 21 days instead of 2 times every 28 days.  I mean...I have a lot of friends that are my age whose parents have passed away or would not be able to travel, etc., so I could of course do this with only the help of friends, etc. but how comforting it is to have family.

I know my sister wishes she could be here but of course that’s not feasible since we’re both working and live so far away.  She’s definitely here in spirit, prayer, thoughts, etc.  She’s coming to visit soon, and I can’t wait!

Finally while I have great support from my entire family I have to give a special shout out to my Aunt Sharon (dad’s sister).  She has been through this with non-Hodgkin’s follicular lymphoma, and she’s been a great source of support and perspective. Thankfully Sharon is in remission and stays there as she is able to take an FDA trial drug!  Here’s Sharon. :-)

Here are some family photos.  I love knowing I have all of this support!

Mom’s side of the family (notice grandparents in the front...I’m relying on their good genes to get me through this!).

Dad’s side of the family.

[brianchi73-blog]

Working at home during treatment

October 1st, 2015

I’ve always liked working in the office and being around people all day...going out for lunch, etc.  It’s been almost one year since I started a new job at Blue Cross Blue Shield of Illinois.  I love the location at 300 E Randolph, and I’ve had a very good experience there with co-workers, management, etc.

My employer could not have been any more understanding and accommodating when it comes to helping me through this time.  BCBS is already very distributed geographically having business in five states and multiple locations in each of those, so the infrastructure for working from home is already in place and works well.  I decided to work from home until I’m done with treatment to make it easier to deal with side effects and to limit my exposure to other people (especially during cold and flu season) while my immune system is suppressed from chemo.

So here’s my last day at BCBS photo vs my first day at home photo.  Can’t complain about either really.

On a side note this reminds me of the Simpsons episode where Homer wants to work from home so he gains enough wait to qualify for disability!  I think I’d rather choose his way than mine!  Compare and contrast.  lol.

[brianchi73-blog]

Chemo...here we go

October 2nd, 2015

That was the first day of chemo for me. Even though you can read plenty of information about it...it's still hard to know what to expect. I did know that it was going to be a long day and that it would normally be three days in a row but they wanted to get me started sooner than later, so I would have one day followed by a weekend and then two more days.

I drove my parents and myself to Northwestern Hospital, parked and gave them a quick "lay of the land". We promptly left and went to Panera to have some lunch before I had to start. After lunch I suggested that we hang out on the 2nd floor until we had to go up to the 21st floor (oncology).

I remember my first trip to the 21st floor which is where I had the consultation with the thoracic surgeon before having the biopsy when I was undiagnosed, etc. I remember thinking....this isn't me...is this me...are these people different from me? It's just a strange feeling that I can't explain.

For the treatment I had a nice room to myself where my parents could stay with me and I could watch TV or whatever. They gave me an IV with no problem, some fluids, some anti-nausea medicine and then explained about the drugs they would give me. One of them has to be done using an "IV push" where the nurse suits up and slowly pushes the drug into your body. The others were done with a regular IV drip. The anti-nausea took about 20 minutes, the IV push was about 20 minutes, then 2 hours for one drug and an hour for the other.

I didn't get sick and I felt pretty good through the process, but I felt a little beat up from it all so I had dad drive home. The next day I felt just okay but was tired and described it as knowing that something "had been done to me". Other than that no side effects. I survived day one of chemo!!

[brianchi73-blog]

Staging -  From Stage 2 to Stage 4

September 30ish, 2015

After the results of the PET scan came back (which happened on the same day as the test) I got a call from my Oncologist, Dr Leo Gordon (who is amazing). He was calling to let me know that because the scan showed activity in my chest and left hip that the stage is 4A instead of 2A. This also means it goes from the broad category of early to advanced.

That was somewhat of a hard pill to swallow but I had already learned that the stage in Hodgkin’s is not as important as it is in other types of cancer. Dr Gordon said that it’s about equally important to 7 other factors of which I had only 3…male, over 40 and high SED rate of 72. I did not have the other 4 factors which had to do with certain blood counts.

What it did change was the type of treatment they decided to use for the first 2 months (roughly speaking). It is called escalated BEACOPP and was developed in Germany. Each cycle is 21 days and you get chemo on day 1, 2, 3 and 8. Then you go back on day 9 to get a neulasta shot which helps your body kick off the production of white blood cells which have tanked at this point. By tanked I mean the blood count had – instead of an actual number. Yikes.

The bone marrow aspiration and biopsy were supposed to help reinforce the staging decision but they didn’t turn up much. However they would have had to turn up something that was positively NOT Hodgkin’s to give some other explanation otherwise they have to assume it’s there. Lymphoma (whether Hodgkin’s or non-Hodgkin’s) is a blood cancer, so it can go where the blood goes which is why chemo is the primary treatment because it also goes everywhere.

So the plan is 2 cycles of escalated BEACOPP, then another PET scan on 11/16, then a decision to stay on BEACOPP or go to ABVD which is the standard treatment and only requires chemo on every other Friday.

Since I’m writing this blog entry retroactively I wanted to show you what’s happened to my SED rate as of 10/12. The SED rate is just one factor but it does indicate the amount of inflammation in the body so it’s good to see it going down into a normal range.