The Haunting Words - "I have Cancer..."

When you heard that Donny had cancer, what was your initial reaction?  Were you shocked, angry, confused or just unwilling to accept the notion that someone has told you "I have cancer."?  Throughout this experience I've learned one thing: everyone responds differently to that phrase.  I know how I reacted the first time I heard it.  It was over two years ago when Donny's friend called and told Donny that he had cancer.  Donny didn't even need to relay the message to me. I put two and two together just overhearing pieces of the conversation.  I immediately started crying.  The only people I've ever been close to who have had cancer are my grandparents.  So having someone close to us with cancer who is our age, was shocking and confusing for me.  How could this happen?  But Donny's friend never saw me cry. No way.

Being a person that loves psychology, observing people's reactions has been a secrete enjoyment for me.  That sounds so sick...sorry.  But the reactions that I've seen throughout this process have been so different - heart warming, cold and upsetting, annoying, silly, shy, heart breaking, comforting - that I can't help observing and mentally noting (and now physically writing out) how interesting it is.

There are people like me, my mom and Mrs. G. who are obviously upset, but hold it together until we are in private and then cry to ourselves.  There are people like one of my friends who called me sobbing asking if I was ok.  I actually ended up consoling her because she was in such hysterics.  There are people who you barely know that come out of nowhere and offer you all the love and support you could ever need.  Which is so kind and wonderful, but truthfully can be overwhelming and slightly uncomfortable.  This one person was so nice and genuine, but I don't even think I'm Facebook friends with them, I don't have their email or phone number, so how am I going to call them and ask for "Whatever I need".  I know that's really rude to say, but the true insistence and persistence on calling this person for ANYTHING I needed was overwhelming, intense and made me slightly uncomfortable and then in turn, made me feel completely guilty because I know this person was being truly genuine.  But at the same time, I almost started crying because here is a person whom I don't know that well and whom genuinely wanted to help.  It was completely heart warming.

There are people who ask me, "How could this happen?  You've gone through so much, how could this happen to you?"  To which I respond - it doesn't matter how much you go through in life...life doesn't care.  Life happens and you deal with it and learn from it.  And truthfully, I believe everything happens for a reason and that what doesn't kill you makes you stronger.  Donny and I have gone through some difficult times and through it all, we've only come out stronger.  And what better way could I really get to know my new In-Laws so quickly?  Throw us together in a completely heated, emotional, tense setting and we'll all get to know each other quite well in a short amount of time.  And then we become closer, stronger, better at communicating and a little more gray haired.  I do have gray hairs now...but at least I have hair.

Mr. G's reaction was the 'what if' reaction.  The weekend we were waiting for the official results to come in, Mr. G. called me while I was at Starbucks with my family.  I came back to the table in tears because I am the type of person who falls apart, literally cannot function because I'll have a full blown anxiety attack (which has happened to me before), if I let myself think of the 'what ifs'.  If it's not Lymphoma, then maybe it's some chronic disease like the doctor said.  But if it's that, then Donny will be sick like this for his whole life.  What if it's something worse like lung cancer?  His survival rate is so much worse if it's lung cancer.  And I stopped him right there.  We CANNOT think of the 'what ifs' because that will drive us crazy.  So we stopped thinking about it the best we could, and we got through it.

Then you have the people who don't know what to say, or whether it's ok to ask about it.  For example, one of my co-workers found out from another co-worker.  And the next time I saw her, rather than her saying something to me, or asking me about it, I got the silent look that says "I feel so sorry for you."  Do you know that look?  It's a sideways glance, usually with your head cocked slightly to the right and your eyebrows slightly raised.  The eyes are big, like little puppy dog eyes after your puppy was scolded - full of sorrow and a tinge of pain.  My co-worker didn't say anything to me. Not hi, not how are you, not how's Donny...not anything.  Because some people just don't know what to say.  Or, they don't know me well enough to know that I won't be upset if they ask about it.  Because some people get really upset when people ask about their personal lives.  But not me.  I'd rather talk about the elephant in the room than get the "I feel sorry for you" looks.

Another very close friend of mine shocked and upset me at first.  Until I truly thought about her and her personality and realized that her reaction fit perfectly with who she was.  She internalizes everything and stays outwardly positive.  I got a kind, "Oh Brit, I'm so sorry.  Are you ok?"  And then "Ok, well I'm sure everything will be fine and you and Donny will get through this."  A couple more reassuring lines and that was it.  Short and slightly concerned, but more like a pep talk than sympathy.

I had seen most of Donny's friends' reactions when his other friend was diagnosed with Lymphoma.  And let me tell you, they are all about jokes.  But you know inside they are upset.  One of his best friends did not answer his mom's phone calls for two weeks because he couldn't talk to her about it.  But the cancer jokes run rampant among his group of friends.  Between Donny and his other friend, we've heard them all.  And I love it because that's how I function, which is slightly twisted, but humor always helps me cope.

Humor helps me cope except for when other people don't get my jokes.  Travel back to before Donny was diagnosed.  I was in the waiting room with Donny, Mr. G. and Mrs. G. waiting to see the first Doctor at the original hospital we were at, the mood was a little morbid and tense, so being the person I am, I wanted to lighten the mood.  So I asked Donny, who was sitting on the other side of his mom, "Do you think you will need a Bi-Bopsy?"  Donny just lowered his head shaking it back and forth, his dad had no clue what I said because he was preoccupied in his thoughts and anxiety, and his mom looked at my so kindly and sympathetically, as if she was thinking "You poor thing, you are so upset you can't even think of the right words." and said, "Do you mean biopsy?"  Donny saw my face, I was trying to hold it together, because I didn't want to cry, so he responded to his mom, "It's a movie quote Mom.  Brittany made a bad joke."   If you don't know me very well, I'm a HUGE comedy buff.  I love funny movies, but even more, I love quoting funny movies.  And Bi-Bopsy is from a great movie, My Big Fat Greek Wedding.

So that night after we spoke to the doctor and officially knew that Donny would need a biopsy, I called my sister to talk to her about everything.  When I was telling my sister about Donny's situation, I was a little emotional.  I started explaining the process and she stopped me mid-sentence and in the most serious and concerned voice asked me, "Wait, Donny has to get a Bi-Bopsy?"  And we fell apart laughing.  So here I am crying and laughing my butt off and I don't know if I'm crying because I'm laughing or if I'm laughing over my crying. Watch the clip here:

After I caught my breath, I realized that I was crying, quite hard actually, but then laughing as well.  I was crying because I was so relieved that my sister understands me so well.  Sometimes I think only my siblings truly know me.  When Molly said Bi-Bopsy to me, I was so relieved that I wasn't losing my mind and that other people in fact think like me and make jokes in seriously tense situations.

Throughout this whole process, regardless of what your reaction was, Donny and I have been completely overwhelmed by the love and support we've received from our friends and family.  Sometimes I get choked up looking at the amount of Get Well cards in our kitchen.  Donny is strong and healthy from all the meals that people have brought us.  I am encouraged by the words we receive from people in passing.  We are lifted up from the "Blue-Box", full of cards, gag gifts to make us laugh, thoughtful gifts to help us push through, and practical gifts to keep us comfortable during treatment, that our friends put together for us.  We are reminded by the lime green (the color for Hodgkin's Lymphoma) wrist bands Donny's friends bought and that all of our family and friends wear in support of Donny.  And I get completely emotional over Donny's boss, students and football team who not only went out and bought lime green socks and shirts to wear during their football games, but who all shaved their heads for him as well.

Along with Donny's Top Ten Positives About Having Cancer, which we may post at a later time, I have to say that the love and support we've received is the definite up side to this whole experience.  It really made me look at our life and reflect on how lucky we are to have so many amazing friends and such a supportive, loving family.  No matter what your reaction to our news was, Donny and I want to thank you for being in our lives.  Thank you for your love and support.  And thank you for being on this journey with us.

Treatment #9

So in true procrastination of studying, I began reading my blog and noticed that I had two drafts I had not posted. SO, here is a very old post (over 1 year old...SOOOO crazy that it's been this long!!!):

Donny and I are happy to announce that we are buying a house in the suburbs, so we have been quite busy lately!  But I don't want to keep you waiting too long so here goes:

Tuesday, March 5, 2013

We saw Dr. P. before we went into treatment.  Donny had some breathing tests done after his last treatment, so we had to get those results back before we could proceed with this treatment.  Thankfully, the tests came back normal.  Donny's lung capacity has improved actually, in part, due to the shrinkage of the massive tumors in his chest.  The test they do for the Pulminary Toxicity showed a slight change for the worse, but the results were still within what is considered a 'normal' range, so Dr. P. told us he wasn't worried about it.

Monday night, Donny and I discussed the option of not having the Bleomycin for the next treatment and then continuing it during the last cycle.  And when the Dr. told us that everything looked fine and that we would continue with treatment as usual this round, it was hard not to argue because we were relieved everything was 'normal'.  But I couldn't let the Dr. leave without asking, "What will happen if we choose not to continue with the Bleomycin for the rest of treatment?"

This is why I love Northwestern.  Dr. P. replied, not with a definite answer, but with data and a decision based on judgement.  They don't say doctors 'practice' medicine for no reason.  Preliminary trials from Germany, have shown that Bleo isn't necessary for the entire treatment of Hodgkin's Lymphoma in early stages (stage 1 and 2).  So based upon that, and the fact that we've seen such dramatic change in Donny's tumors, it's hopeful that Donny won't need to continue with the Bleo.  However, at the same time, Donny was a bulky stage 3, and Dr. P. said he didn't want to undertreat him.

The concusion was somewhat of a compromise in that Dr. P. agreed not to administer the Bleo this round, but would continue the Bleo next cycle.  This allows Donny a small break from the horrid chemical but ensures that we end the 6 months of treatment with a bang.

No Bleo in #8

Treatment #8 - February 19, 2013

After seven treatments, treatment number eight was the same old routine. Mrs. G. picked Donny and I up around 1:15pm and took us downtown to the Galter Pavillion. After the blood draw, we got called back to the treatment room where the head nurse, Cheryl, asked us about Donny's latest symptoms and addressed any questions we had.

Donny's coughing before he was diagnosed was unlivable. He literally coughed no matter what he did. He walked to the kitchen, coughed, sat in his chair, coughed, rolled over in bed, coughed. The only time he didn't cough was when his adrenalin was pumping a little, like when he drove or flew in a helicopter (on our honeymoon). But after each treatment, the coughing has gotten less and less, to a point where it was almost unnoticeable - until the last two weeks. While occasional coughing in healthy human beings isn't something to worry over, coughing in someone who is on Bleomycin is something to worry about.  Bleomycin, 1 of the 4 drugs Donny is on, is the drug that many athletes, most famously Lance Armstrong, refuse to take as a treatment option because it can cause different forms of lung damage, most commonly known as Pulmonary Toxicity.  And coughing is the first symptom of pulmonary toxicity.

When Cheryl came in to ask us Donny's latest symptoms, we told her about the increase in coughing.  She was immediately concerned, not in a freak out kind of way, but in an inquisitive way, where she asked a lot of follow up questions and made sure to tell Dr. P. about it.  Naturally, Dr. P. wanted to see us after hearing this news.  We usually see him every other treatment, but with something like this, he came over to see Donny.  Dr. P. was not worried because Donny's cough isn't a dry cough.  But still, Dr. P. said that Donny would not receive the Bleomycin today and that he wanted to do some precautionary tests.  So Donny had to get a chest X-ray immediately after treatment and we have to schedule a pulmonary exam next week some time.

After we got home, Donny felt like crap and fell asleep for a couple of hours.  But of course, the Hawks were on, so he woke up for that and managed to scrounge up enough energy to cheer for them til the end.

The Beginning of the End

Treatment #7 - February 5, 2013

Last treatment marked the half way point (knock on wood).  So this week marked the official beginning of the end.  I have to say, I was dreading treatment this time.  (Poor Donny, I told him that and he looked at me like I had two heads and asked, "How do you think I feel?")  At first I didn't know why I was so anxious on Tuesday, but then I realized it was dread - a different feeling than anxiety.  With anxiety, I'm restless and lack concentration, and want to get treatment over with.

Dread is a whole new feeling for me.  If I were an ostrich, I would have stuck my head in the ground and happily stayed there until Donny came home.  I just didn't want this treatment to get here.  And I know it's because the last treatment was bad.  Donny was the sickest he's been since beginning this process.  Last treatment was the first time he was actually nauseous for more than one day.  And it was the first time that taking the extra anti-nausea pills didn't help.  So that was miserable for Donny and I hated watching it.
 
If you've ever taken care of someone who is ill, and no medicine or treatment helps them, then you know how I feel.  It's a helpless feeling watching someone suffer and wanting so badly to make them better, even though you know you can't.  And what's worse in Donny's case, is that I can't even do anything to make him more comfortable; like fluff his pillow or get him water.  He feels like shit no matter what and I can't do a darn thing about it.  But then a week goes by and Donny is, although tired, back to feeling OK.  So that's why I was dreading this treatment.  He did so great last week after the awful week, that I just didn't want to go back to the bad.  It's a total mind game for me. One week is horrible and one week is normal.
 
Treatment went by fast again.  We talked to our head nurse, Cheryl, most of the time.  She was cracking me up telling us how she hates chocolate.  "I'm already chocolate, I don't need to eat any of it." she told us.  And Donny actually felt ok when we got home.  I think it's because he was eating candy the whole time.  The nurse cleans out his port with a saliene solution in between pushes and after treatment.  And when they do that, he gets a really bad, iron/salt taste in his mouth.  Last week, when Donny came in to get his blood work done, he told the nurse this and she said, "Try eating Lemonheads.  The sour taste over powers the nasty salt taste. We always have Lemonheads at the clinic. Just ask the front desk next time."  So this time, although Donny did come prepared with some Sour Patch Kids, I went to the front desk and asked for some Lemonheads.  And thanks to the Imerman Angels, Northwestern has an entire cabinet full of them!  Take a look:

So, back to the point, Donny ate his Sour Patch Kids before, during and after the treatment was done, so I think the sugar helped. If you think about it, Donny eats lunch around 11:30am, comes home from work, goes to treatment, has blood drawn, gets pumped full of drugs, including Tylenol, 4 chemo drugs, 2 anti-nausea drugs, and doesn't get home until around 6:30 or 7:00pm.  Nevermind the drugs Donny receives, any person would be famished by 7pm if they hadn't eaten since 11:30am.  So I think having a little bit of sugar to carry him through treatment helped his strength...or at least that's what I'm telling myself.

When we got home he was tired, but didn't feel too bad.  The next day was a different story though.  The side affects of chemo is cumulative, meaning they get worse the more treatments Donny has.  And just as they did last treatment, they got even worse after this treatment.  Although we did tell the nurse that Donny was nauseous after last treatment, so they added another anti-nausea medication this time.

I feel like I say this every time, but bless his heart, Donny worked all week and even worked a basketball game on Friday night.  That's why I think Saturday he was down for the count.  I was supposed to go to his cousin's 1st birthday party, but Donny was feeling so sick that I stayed home with him.  It's strange.  I asked him to describe his symptoms and this was the best he could give me:

• Upset stomach
• Headache
• Body ache
• Bad taste in mouth
• Extreme fatigue

And he told me that doesn't even do it justice because you can't quite explain it to someone who hasn't experienced it.  Any of you readers out there who have gone through chemo could probably describe it better.  Feel free to give it a shot in the comments!

Halfway to Home Plate

January 22, 2013

Six treatments down and six more to go until the end of this grueling process. (Knock on wood). (Knock on wood many, many times).  People ask me all the time, how are things going?  And I always respond, "Today it's....".  Sometimes they laugh a bit, sometimes they are confused. 

"Today?" They ask me.  Because they're asking about the overall process.  But I have to remind them that every day is a new day.  This past off week (I call the week Donny doesn't have treatment his 'off week'), Donny has been the strongest I think I've seen him.  He didn't have itching, he wasn't too tired, he didn't need his anti-nausea medication, he worked Friday and Saturday night, went to breakfast with me Sunday and out to dinner for my birthday Sunday night.  Needless to say, we've been busy, and he's been strong through it all.  A little tired at times, but overall feeling well.  When we got his numbers back yesterday, we found out why he was feeling so great.

Last week, Donny's White Blood Cell count was the highest it has been since he started treatment.  Thus, why he felt so great.  Yesterday, his White Blood Cell count was one of the lowest it's been since he started treatment.  I asked the nurse how this could be possible.  He had treatment two weeks ago, so why are his numbers dropping now?  She explained that with ABVD treatment, this is actually very common because there is a delay in the chemical process that sometimes doesn't affect the cell count until the second week.  Which is why his blood count was good in his off week (one week after treatment) and why it was so low before his treatment (two weeks after).

Dr. P. surprised us and stopped by for a minute to say hi and to ask Donny how he was feeling. He asked a few questions and that was about it.  He still wants to monitor Donny's liver enzymes to make sure they are normalizing after being off the Fluconozole (anti-fungal medication). 

We told Dr. P. that Donny ended up going to the GI doctor last week to get that spot on the PET scan checked out.  He was really happy about that and wanted to know what the GI doctor thought.  Basically, Dr. K. (the GI doc) didn't think it was at all related to Donny's cancer and was not overly concerned about what he saw on the PET scan.  He actually said it didn't look like anything was really there, but that he doesn't read PET scans for a living, so he'd have to trust the technicians that read the scan.  He said the chances of a 27 year old male having polyps or anything of that nature is rare, but that it's better safe than sorry.  Donny has another appointment with the GI on Feb. 11.

After Dr. P. left, it treatment went by quickly.  Donny brought his iPad, so we got to watch Shark Tank on YouTube.  It made the time pass very quickly!  I'm slowly falling in love with that iPad.  What a great piece of technology.

Anyway, we got home and Donny felt like crap.  He can't explain to me how he feels except "bad".  He's tired, worn down and hot then cold, hot then cold.  But, as always, once Donny has something to eat, he starts feeling better.  That's really the key, and he no longer fights me about it.  Once Donny eats, he gains a little more strength.  Although he still feels "bad", he feels well enough get up to go to the bathroom or to the kitchen.  After dinner, we started watching our beloved Blackhawks (SO excited they're back!!!) and Donny fell asleep for the night.

We'll see what the next to weeks bring us.  As I said, every day is a new day.  Hopefully, my birthday wish will come true and Donny will have smooth sailing from here on out.  Keep saying your prayers...it's been a long stretch, but we're half way there.

Chemo #5 - Donny's Dramatic Improvement

Tuesday, January 8, 2013

Great news!  Donny's test results were extremely good and he can remain on his current treatment for the next 4 months!  Thank GOD!

Tuesday was a looooong day.  We were at Northwestern from 8am until after 6pm.  Partially due to my doctors appointment in the morning with the Allergy Specialist.  And partially due to the fact that they took forever to call Donny back to treatment.  The lady who scheduled Donny's appointments told us the only time Dr. P. could see us was at 12:45, but then she didn't schedule the treatment until 2:45pm.  I was not a happy camper, but how could I be upset after the great news we received during our appointment with Dr. P.?

We met with Dr. P. to go over the test results at 12:45pm.  I was extremely anxious because my understanding of what needed to happen was that the PET scan needed to be clean - meaning there is no longer cancerous activity.  But when Dr. P.'s research assistant, Emily, called me on Monday, she read me some preliminary results that stated there was "mild residual activity".  So I thought there was still cancerous activity and that Donny might need to be moved up to the BEACOPP chemo.  However, the results also said DRAMATIC IMPROVEMENT, so how could he get moved up if there had been great improvement?  I was confused.

Dr. P. wasted no time in telling us that all the scans looked great, the scans show dramatic improvement and that Donny will remain on the ADBV.  Needless to say, Donny, his parents and I were extremely relieved.  This is the news we have been waiting for since October 19 when Donny had his biopsy done.  We all took a deep breath and I held back my tears.  As I've said in previous posts, I had a good feeling about these test results, but the anxiety of waiting for them was intense.  There's nothing like hearing the words from the doctor himself, "you're test results look great."  Phew!

But then came the blow.  Donny has a spot on his colon.  The original scan in October showed the spot as well, but Dr. P. said not to worry about it then because it could be due to the cancer.  However, since the spot has not gone away, Donny now has to go to a Gastroenterologist for a consultation.  Although Dr. P. said it's probably nothing, Donny's grandfather had colon cancer, so he insisted we go see a doctor this month.

After we met with Dr. P. we waited for another couple of hours to be called back for treatment.  Every time Donny walked away Mr. G. told me how concerned he was about the colon issue.  I felt bad, but I told him to stop because I was anxious enough about it and I couldn't take hearing the 'what ifs'.  I can't function if I think of the 'what ifs'.  Thankfully he did after I reassured him that I would set up the Gastroenterologist appointment right away.  Today I called Dr. P.'s office to get the referral and will set up the appointment this afternoon when I hear back from them.

Overall treatment went well.  Our regular nurse, Cheryl, was back and she so eagerly went into full, awful, gory details about what BEACOPP is like: blood transfusions every week, people falling over for no reason, looking and feeling like hell the entire time, the list went on.  I was very glad she never shared those details previous to us finding out the test results.  I don't think I would have been able to keep my composure quite like I did.  I would have been a mess.

God has answered our prayers and Donny has shown incredible progress from the treatment.  And, believe it or not, although it's very thin, he still has a full head of hair!  Thank you all for your continued love and support.  It has truly gotten us through these tough times.  It's so comforting to be able to celebrate this with all of you, so thank you again and again.

5 treatments down, 7 to go.  Only 4 more months until this process is over :)

Bare Necessities of Life

Donny's friends call him all sorts of things, like the Hulk (thus the Donny Smash Cancer bracelets), a pop machine, and the beast.  But I always joke about Donny being my big bear.  He's always been so loyal and protective of his family and friends and let's face it, he's so tall and has a HUGE back.  But best of all he gives the best bear hugs. Recently, Donny's eczema started reappearing and unfortunately, it reappeared on the middle of his back where the poor guy cannot reach.  Every time I come home from work I give him a back scratch and there have been several times that I've walked into the living room to find Donny using the edge of our heater to scratch his back.  I can't help it, but the first time I saw Donny using the corner of the heater to scratch his back, I immediately thought of Baloo.  Who is Baloo you ask?  He's a character in The Jungle Book, Baloo the bear.  So just for fun, to put a smile on your face, I thought I'd post this video of Baloo scratching his back, because this really is what Donny looks like when his back itches!

Here's the full Bare Necessities song from the Jungle Book.  This whole clip pretty much reminds me of Donny.  Ok, well, maybe not the part where he's eating healthy food.  But the philosophy of life, live simply and enjoy yourself, reminds me of Donny.

Happy Sunday!