Chemo Treatment #2



Hello from the Galter Pavillion!

The week that Donny received his first chemo treatment (November 13) was rough, but the second week was much better.  Day by day he gained more energy, the chest pains went down, and he was able to do more activity.  In fact, we are even noticing improvements in his chronic cough.  Although he does have a cold now, which we are monitoring, his chronic cough is getting better.  Donny used to hack up a lung when he came up the stairs to our 3^rd floor apartment and his coughing has decreased significantly in the past two weeks.  I don’t want to be naïve and think that he’s cured already, but I am taking this improvement as a sign that the chemo is working.
 

We were also able to celebrate Thanksgiving with both our families, his for an early dinner and mine for a late dinner.  Naturally, since Thanksgiving is my favorite holiday, this made me happy.  I felt like the kids in Talladega Nights when they found out their parents were getting divorced, “Yeah, two Christmases!!!”  Only I was thinking, “Yeah, two Thanksgiving dinners!”  The food was delicious and it was wonderful to be surrounded by the people we love all day.

This past Tuesday, November 27, Donny had his second round of chemo.  He brought an iPad this time, so he was quite content playing games.  Donny had labs done before the nurse could begin administering the chemo and they came back fine.  Although, his white blood cell count is 2.6, which is below the normal 3.5 – 10.5.  This basically means that Donny barely has an immune system to fight off any infection, disease, etc.  But that is why Donny is on 4 different antibiotics; to fight infections for his insufficient immune system.  I was freaking out yesterday though because I’m not feeling well at all.  I actually think I got the cold that Donny has; only mine is getting worse, or maybe I’m making it up, but I think it’s getting worse.  My throat is scratchy and my head is killing me.  And our apartment is tiny with only 4 different rooms, so what the heck am I supposed to do?  I’m terrified that if I get sick he’ll catch what I have, so I called my aunt to ask for her advice.  My uncle was immune suppressed a good majority of his adult life because he had a number of different transplants.  So my aunt is, unfortunately, quite knowledgeable when it comes to dealing with this.  She basically just told me, wash your hands, sleep on the couch and call your doctor and get a prescription immediately.  So that’s what I’m doing.  This whole time I was so worried about Donny getting sick from other people, I never even thought about what I would do if I got sick.  And truthfully, I’m not really that sick.  Normally, I would just pound Vitamin C for a week and be fine, but because of Donny, I’m a little paranoid.  But my aunt assured me that it’s better to be paranoid and overly cautious than to let this turn into some infection, have Donny catch it and then have him hospitalized because of it.

 

All in all, the second chemo treatment went well.  The nurse was with us for the first hour or so ‘pushing’ the first two drugs and then we waited for another hour or so while the IV with the last two drugs dripped.  Both times we’ve had connections to the nurses, so that’s been nice to talk with them. The first nurse dated one of Donny’s friends from college, and the second nurse went to Marquette with a couple of people who lived in Elmhurst with me.  I tried reading my book, but I couldn’t really concentrate because of my nerves and it’s a small room so it’s not that comfortable, so talking with the nurses makes the time go by much quicker!

 

I was surprised by how anxious I was about this second treatment and I’m not really sure why I was so anxious.  I felt bad because there was construction on my way home from work, and I couldn’t find me jeans to change into so I was scrambling to get ready for the appointment.  And then Donny and his mom were trying to talk to me on the car ride there and I just was a ball of anxiety, so I wasn’t really talking.  I hope I didn’t come off like a complete brat, but I just didn’t realize how anxious I was for this appointment until we were on the way to Northwestern.   I think I was more anxious about how sick Donny would get after the treatment more than the actual treatment itself.  But Donny seems to be doing better this time than he was last time.  Wednesday he was tired, but felt pretty good and his coughing went down.  And this morning he said his stomach wasn’t right again, not nauseous, but not right.  But other than that, he said he’s feeling pretty well.  So I’m relieved about that, but I don’t want to kid myself yet.  Friday will be the true test.  That’s the day when Donny felt the worst last time, so we will see this time around.

 

It’s funny how, no matter what knowledge you have about this process, it’s still a day by day thing.  I could read all the books and talk to hundreds of cancer survivors and their stories will still be different than ours.  The thing that is the hardest for me is that just when Donny seems to be back to normal, he’ll have another treatment and start the cycle all over again.  But if this is what we need to do for him to get better, I’m ok with that.  Now I keep thinking, only two treatments left until we know if the chemo is working or not.  January 4, Donny gets the CT and PET scans done again.  Hopefully they’ll show the cancerous activity has stopped and the tumors have shrunk.  Until then...bring it on.

As promised, here is a picture of Donny's port connected to the IVs.  This is on the left side of his chest.  I can't help it, but I call these his tentacles. LOL  It's weird watching the red chemo go in because you can see the bright red fluid flowing through those tubes that you can barely see now.

   

One Week After Treatment #1

What a whirlwind this past week has been.  Up until now, Donny hasn't really been sick. Obviously, he isn't healthy, but he hasn't experienced symptoms, except for fatigue, so he has been able to function normally.  That all changed last Wednesday.

Donny's first chemo treatment was on Tuesday afternoon and other than peeing red (side effect from the chemo), he was pretty normal after the treatment.  Wednesday he started to not feel well.  Not that he was sick, but he definitely wasn't well.  I asked Donny how he was feeling and he said, "Not good, but not bad."  Since that didn't really help me, I asked him to relate how he was feeling to something...mono, the flu, a cold...something.  He responded that he couldn't relate it to anything because he's never felt like that before.  He said it wasn't nausea, but more like an upset stomach and bloating almost.

One of the side effects of the chemo is skin discoloration and reddening of the face. Well, his face was so red on Wednesday and Thursday that I was convinced he had a fever.  And the directions the nurse gave us said that if Donny got a fever over 100.5, we needed to go to the ER.  So I kept checking if he had a fever, I was driving him nuts.  At first I would just feel his forehead, but after a while he got annoyed, so I had to get creative.  I would go up to him and give him a kiss on the forehead, or hug him so I could get my cheek next to his.  He caught on to those tactics too.  "Will you stop?  I promise you, I will tell you if I feel feverish." He scolded me with a smile because he couldn't get mad at me.  I kept apologizing, but his face was so red, it wasn't natural, I just could not help it.

Thursday was pretty similar to Wednesday, Donny went to work, came home, ate and went to bed by 8:30 pm.  He wasn't hungry, but if I gave him food, he ate it all.  He didn't feel good, but he didn't feel awful.  Friday, however, was rough.  Thank God he had a half day because the second he got home, he went straight to sleep.  Donny was exhausted and told me he felt like he got hit by a bus.  He was sore, nauseous, coughing and just felt like crap.  That night we had his family party to go to, so when I got home from work, I made the appetizer I was supposed to bring (buffalo chicken dip, so naturally, I had to make some for Donny), and got ready to go.  But the poor guy just didn't look good and I could tell he didn't feel good, so as much as I wanted to go to his cousin's, I felt awful leaving him.  So I offered to stay home.  And this is why I love him.  Donny looked at me and said, "Don't be silly, you've been looking forward to this all week. Go."  I double checked to see if he was sure and he added, "Plus, you need to go so you can bring me home some cake." LOL

I am very thankful that Donny let me go.  Some of you may be reading this thinking, "How could she leave him?  That's not right. She should be by his side if he is sick."  But here's my defense: this treatment is cumulative, meaning, the more chemo he receives, the worse his symptoms will be.  And there is going to be 6 months of this treatment.  So, if Donny is feeling well enough for me to leave him for a couple of hours, I need to take that opportunity.  Because I know that there will be times where I can't leave him.  And during those times, I will be by his side no matter what with a smile and love in my heart.  But in order for me to take care of Donny during those times, I need to take care of myself too. I am not the type of person who can sit inside for days and watch TV.  I go stir crazy and get really anxious and Donny knows this about me.  So he promised that he will be completely honest with me.  If he needs me or even wants me to be there so he won't be alone, I will be there in a heart beat.  But if he feels well enough that I can go out for a couple of hours, I can go out.  Plus, I think Donny enjoyed a quite house with no wife home to worry over him.

Each day after Friday got better and better.  Saturday he started to come out of it, but started to get really sore.  So the two made a switch.  The less nauseous he felt, the more sore he got.  Although Sunday his stomach felt almost normal, his chest and back were very sore and he was very uncomfortable.  Because his chest is so tight, he gets really uncomfortable laying down, so sleeping has been an issue.  I never thought I'd say this, but thank God he has his La-Z-Boy chair.  It allows him to sleep sitting up, so he is more comfortable.  But it's lonely without him!  And in our small apartment, it's a spacial issue when Donny goes to bed in the middle of our living room at 7pm.  I didn't know what to do with myself last week when he was going to bed so early.  Our apartment consists of a living room, kitchen and bedroom, so there isn't a lot of common space.  But I guess that's the least of my worries!  At least Donny is sleeping.

Both Monday and today Donny has worked a full day at school and then has worked security for the St. Pat's basketball games.  So, needless to say he is feeling a lot better.  His chest is still tight, but he has a lot more energy.  Hopefully he'll keep feeling better and better each day and the soreness goes away.

Donny went down to Northwestern today for blood work and we'll hear if anything is abnormal, but he should be good to go.

Happy Thanksgiving everyone!!

Chemo Treatment #1 Long Update

Sorry it took me a while to post this.  I finished writing it on a different computer and kept forgetting to email it to myself.

Tuesday, November 12 - Chemo Treatment #1

Going to work knowing that in 4 ½ hours your husband will undergo his first chemo treatment is very difficult.  I wasn’t sure what to expect during the treatment and all my uncertainties and questions were on repeat in my head all morning.  Donny told me ahead of time that he did some research and would be given 4 different drugs, but how?  And when?  And how will they hook up to his port?  Will he feel the drugs immediately?  Will it hurt?  How sick is Donny going to be afterwards?  How sick will he be later in the week?  When will he lose his hair?  I know we had talked to Donny’s friend who had gone through chemo, but even he said that every person is different, just like the nurses and Dr. P. said, health and strength depend on the patient.  So I still had a lot of questions.

I should have done more research online.  That seems to help Donny a lot.  But every time I go online I end up reading the bad stories that people post about how horrifying their experience was or how someone they know died.  I just can’t stomach that.  So, I went into this first treatment blind.  Well, maybe not blind.  I went into it with really blurry vision that only bifocals (or the actual chemo experience in this case) could cure. 

As I said Tuesday, the process itself was different than I imagined.  I guess I thought Donny would be ‘plugged in’ to an IV and sit there for 4 hours.  But it was much more involved than that.  Donny had labs done first, and then we got called back into the treatment room.  It was nice because we got a room all to ourselves.  All patients at Northwestern get their own rooms for treatment.  I thought this was standard, but Mrs. Gelsomino was saying that when her mom was in treatment, she was in one big open room with all the other patients being treated.  I can’t imagine that would be good for your psyche – seeing all the other people and how sick they look.  And what happens when they don’t show up one day?  You ask the nurse, “Where’s Betty, she’s always here at this time.”  And the nurse just looks at you with sadness in her eyes, and she doesn’t even need to say the words because you know Betty has passed away.  I’m VERY thankful for our private rooms.

Anyway, after we were taken to the room a nurse came by with the Mobile EKG Unit.  She asked us to leave the room so there wouldn’t be any distractions.  The test took about 15 minutes.  Mrs. Gel and I popped our heads in the room when the test was done and couldn’t help laughing a bit.  Donny was lying flat on the bed with no pillows with wires connected to his bare chest, neck, arms and legs.  He looked like the man in the game Operation.

After the EKG, our nurse, Cheryl, came back in the room to get the treatment started.  She explained each drug very thoroughly (see below for drug information) and discussed the large range of side effects for each of the 4 drugs:

Chemotherapy Drugs (click the links to read more about these drugs):

Adriamycin

It looks like red Kool-Aid.  The nurse said this is the ‘bad one’ and if we remember just one thing about chemo, it should be that Donny received the red drug.  This drug is one of the worst ones and a person can only get a certain amount of it in his/her lifetime.  So if we move across the world and Donny gets sick, the most important thing to tell the doctors is that he had the red chemo drug at one point in his life. It’s one of the only drugs that is this color, so the doctors should know what we’re talking about.  Donny had the EKG and the Echo tests because of this drug.

Bleomycin

Fun/Disturbing fact about Bleo (nick-name for this drug): This is the only drug that Lance Armstrong refused when he was going through chemo because it can cause severe breathing problems and/or cystic fibrosis.

Naturally, when the nurse told us this, I felt my heart skip a beat.  I was trying to stay composed because Donny and his mom were there and I just had to keep it together.  But in my head I was screaming, “Holy crap!  Are you kidding me?  Donny has horrible asthma and is allergic to pretty much everything, and this drug could make his breathing problems worse?  There’s no way he’s taking this drug – F this!”  Then the rational side of my brain chimed in and reminded me that this drug isn’t really negotiable if I want Donny to completely recover.  So I turned off the screaming and calmly told the nurse about Donny’s already bad breathing issues.  She smiled and said she knows, she read the charts and that most likely he’ll be fine, but she has to tell us about all the side effects.  Really helpful...thanks.  The pulmonary (lung) test that Donny had was for this drug.

Velban

This drug causes severe constipation which Donny has additional medication to prevent.  This drug can also cause Peripheral neuropathy (numbness of the hands and feet).

Dacarbazine

This drug isn’t too bad, the main side effect is nausea. Donny also has great anti-nausea pills to take to prevent the nausea.  Tingling of the hands and feet is also a side effect.  Donny did experience tingling in his right hand the first day, but it went away by Wednesday.

When Cheryl was done explaining the drugs, side effects and so on, she began administering the drugs.  The Bleo was administered first to make sure he didn’t have a reaction to it.  It was given through a syringe that she stuck in Donny’s upper arm.  The second was the Adriamycin that was administered through the port in Donny’s chest.  I apologize, I was so overwhelmed with the whole process that I forgot to take a picture of what the port looks like when the IVs are in it.  Next time...

It was strange watching the red Kool-Aid flow through the IV tube and into Donny’s chest.  If you came into the room late, you would have thought the nurse was giving Donny blood.  But it was the chemo, not blood.  As I’m writing this, I realized, the thing that was most different than I anticipated was the way the nurse administered the drugs.  I thought all the chemo would be in one IV bag that just hung there connected to Donny’s port.  But actually, the Bleo and the Adriamycin were administered manually through syringes (one with a needle in his arm, and one that connected to the IV in the port).  The other two were administered through IV bags.

All in all, it was a pretty simple process.  It didn’t take as long as I thought.  And they even left us with a packet of directions, all spelled out on when Donny needs to take which medications (he has additional prescriptions: anti-fungal, anti-bacterial anti-nausea, etc.) and directions on what to do if Donny experiences severe symptoms:

Call your doctor if:

Fever of 100.5 degrees or higher à Must go to ER

Uncontrolled nausea/vomiting/diarrhea

Pain or burning with urination

Develop sores/white coating in your mouth

Hopefully we won't have to call our doctor about any of these symptoms, but it's nice to have.

Chemo Treatment #1 Quick Update

Donny's first chemo session was a success.  And it was not at all what I thought it would be like.  I'm not quite sure what I thought it would be like.  Maybe like a dingy room with an IV hook up that Donny would be sitting in.  Maybe I thought it would, once again, be some really different medical thing.  But again, the mysterious medical 'chemo' that I had in my mind ended up being 2 syringes of clear liquid drugs, 2 IV bags, one of water and one of a different drug, and 2 infusions (a syringe without the needle that hooks up to Donny's IV) of a kool-aid like red liquid which was a different drug.  I'll get into more of the drugs tomorrow.  They all have lovely different side effects!

For now, I just wanted to give a quick update because we're exhausted and need to relax.  Donny is doing well.  He said he feels good, but a little funny.  He's not quite sure what funny feels like, kind of nauseous, but not really.  I guess that's what happens when you have 6 different drugs and mustard gas flowing through your veins.  Oh yes, I said mustard gas.  Did you know that Chemotherapy originated from mustard gas?  More to come tomorrow...

Thank you again for all of your thoughts and prayers today.  Your love and support continues to push us forward :)

A Great Escape

Donny and I were able to get away this weekend to his parent's condo in Lake Geneva.  Technically, it's Lake Como, but Lake Geneva is right next door and more people are familiar with it, so it's just easier to say Lake Geneva!  We really needed to get away from everything and just relax. We love going up there and going to breakfast, it's our favorite meal of the day, going shopping uptown Lake Geneva, and just laying around the condo by the warm fireplace.  Plus, it brings me back to some happy days.  Donny proposed to me overlooking the lake through the great big balcony windows 2 winters ago.

We went up on Friday night after a delicious, expensive, steak dinner at Phil Stefani's restaurant downtown Chicago.  Thanks to my grade school girlfriends and Donny's coworker for the gift cards!!  I have to say that since Donny has been diagnosed, he has been one well fed boy.  Thank you to Kaitlin, Jocelyn, Melissa and Mike, Tessa and of course, our parents for the wonderful meals.  Not that we need that, but let's be honest here, Donny loves him a good home cooked meal!  He's not going to turn that away...unless of course, it's a meal of brussel sprouts and veggies, and even then, he might eat a helping or two :)

The weather was 60 and sunny until later Sunday afternoon, so we really lucked out.  Everyone in Chicago was telling us how crappy the weather was there all weekend.  I got to go for a relaxing run along the lake, got some shopping done, and Donny got some fudge and Jelly Beans.  Donny was cracking me up.  We went into the shop that has all the Jelly Beans and I joked that he was like a kid in a candy store.  He said, "I am.  No, wait...this is better than being a kid in a candy store.  I'm an adult in a candy store.  I don't have to ask my parents for money.  I have my own.  I could really do some damage here!"  So as you can tell, Donny is doing just fine :)

Sunday night we went to my all time favorite restaurant ever, Texas Road House, and came back home to watch DA BEARS!!!  It was a great escape from reality for a little bit that I think we both needed.  On the drive home, we had a chance to talk to Donny's friend who had Non-Hodgkin's Lymphoma almost one year ago.  He gave us the low down on how chemo went for him, so it was nice to mentally prepare ourselves.  He said that his hair fell out after a couple of chemo sessions, he was the sickest after his first session and the nausea got better each treatment, and that the nausea medication he was on helped him a lot.  Overall, it was a very relaxing weekend that we both needed.

I'll try to post again on Tuesday after the chemo session.  Until then...

Chemo begins Tuesday

After a week of no phone calls from Northwestern, Friday I received 4 calls.  The first was to confirm our appointment on Tuesday.  Donny will be getting his first round of chemo on Tuesday.  The second was from  Dr. P.'s assistant, Emily.  Donny will need an EKG (heart test) before he can start chemo.  I asked Emily if Donny can get the EKG on Tuesday before the chemo so he doesn't have to take two days of work off.  I also asked if they had received the correct bone marrow sample this time.  Emily said she would double check both things and call me back.

The third call I received was from the fertility clinic.  We are all set in that department and have fully ensured that we will be able to have a family of our own when the time comes (God willing...).  Just a quick side note here: Babies are one of life's greatest miracles.  It is truly amazing that anyone can get pregnant.  Read about it...there are a lot of details I don't really want to get into, but all the right pieces have to be in place, and they pretty much have to be perfect.  It's kind of mind blowing actually.

The last call was from Emily again (Dr. P.'s assistant.)  She said that, yes, they have the bone marrow and yes, it's Donny's bone marrow this time.  She also said, yes, Donny can get the EKG done on Tuesday.  However, rather than Donny going to a different building on Tuesday morning to get the test done, Emily ordered the Mobile EKG Unit to come to Donny at his chemo appointment to have it done.  The mobile EKG will be administered with the doctor right there to read.  So there is no wait time for the results to be read.  Once again, Northwestern is amazing.  So at 1:30pm on Tuesday, Donny will get "labs" done and then the chemo begins around 2:15pm.  We have a bunch of movies ready and are bringing my laptop so we'll have entertainment the whole time.  Mrs. Gelsomino is also going to be there so there will always be someone with Donny if one of us has to go to the bathroom or go for a walk, which is nice.  The session is approximately 4 hours so it will be a long day for all of us.  I just hope that Donny isn't too sick afterwards.  We'll just have to take this one step at a time until we know how he fairs...

No updates

No updates today. We haven't heard anything from the doctor. We found out on Friday that the other hospital sent the wrong bone marrow to northwestern. Yes that's right...they sent some totally random person's bone marrow instead of Donny's. Dr. P. called me himself to tell me. I was furious! We got the right bone marrow sent overnight, but it still delayed the response from the doctor.

We hope to have an appointment by Friday this week for Donny's first treatment. I'll keep you updated!

Diagnosis & Treatment Plan

A few people have texted me asking for an update about yesterday’s appointment, so I apologize for not being prompt with this update.  By the time I got home from work after both appointments yesterday, I was exhausted.  Donny and I ate dinner and were sleeping by 8:30pm last night.  We got a good night’s rest to say the least.

Yesterday began bright and early with our first appointment at 10am, which meant that we had to leave before 9am to account for traffic.  But once again, even with bumper to bumper traffic and a stop at Dunkin’ Donuts for breakfast and coffee, it only took us 35 minutes to get to Northwestern.

We met with a fertility doctor first.  She was so sweet and lively, not at all what I expected.  We talked with her for a long time about our options, the process and life in general.  She was from Wheaton, so she and I were trying to convince Donny that Elmhurst is better than Norridge.  (Even though it doesn’t matter at all...I just want to live in Elmhurst, and Donny isn’t sold on it yet.  All in good time...hopefully.)  Anyway, she walked us through the process and what it would entail when the time comes to have kids.  So I think we both left that meeting feeling very comfortable that our future will include children no matter what.

We had a two hour lag between the fertility appointment and our next appointment with Dr. P., so Donny and I killed some time eating lunch, walking around and reading/playing games on my phone.  It was actually a great and somewhat laid back morning.  It was even a little fun.  There were quite a few characters in the one waiting room.  There was a guy who was snoring so loud, it sounded like he was performing in a concert by himself.  Everyone in the waiting room was cracking up. 

Donny’s parents got to Northwestern an hour before the appointment, so that broke up our waiting time too.  We met them and all went up to the 21^st floor together.  Time then went by pretty quickly.  They called us into a waiting room in the back and Dr. P. met us there. 

But my anxiety started the second his parents got there because I felt bad.  We hadn’t told them about the bone marrow biopsy.  I got a call the day before saying that Donny would need a bone marrow biopsy done again.  The lady who called to tell me this didn’t have a reason as to why.  So I told Donny but we decided not to tell anyone else because we knew his parents would be so anxious and upset.  So I felt really bad, but we figured it was better not to worry them ahead of time. 

It was a good thing we didn’t tell his parents, because the bone marrow biopsy didn’t even happen!  PHEW!  Dr. P. wasn’t aware that we had a biopsy done already, so he said he didn’t need to duplicate efforts.  Although, this irked me a bit because I had called the day before and spoke to one of the nurses who said they received the biopsy from the other hospital.  So I knew that the results were there.  This was also extremely disappointing because without the bone marrow biopsy, Dr. P. couldn’t give us the final diagnosis.  The thing we’ve all been anxiously waiting for all week.  Regardless, Dr. P. was able to pretty much give us a diagnosis anyway.

Diagnosis

The PET Scan showed that the cancer was in Donny’s spleen.  DON’T WORRY!  This is normal.  The spleen is typically the first place the cancer will go to if it moves from the lymph nodes.  But this does mean that the cancer is stage 3, which is just as curable as stage 1 and 2, so again...don’t worry (or try not to worry more).

Treatment

From here, Dr. P. was amazing.  As nerve racking and unsettling as this whole process is, Dr. P. was so knowledgeable and thorough about everything that we were all very comfortable with what he had to say.  He went through two different options for treatment: one for a lower stage cancer that includes radiation and one for an advanced stage cancer that doesn’t include radiation.  And there are two great clinical trials that Donny can enter for either option.  Either clinical trial would be a great opportunity because they are confirming previous data from other trails.  Meaning, these trials are in second phases, so Donny isn’t a guinea pig here.  There were years of studies done to determine initial success rates for these types of treatment and now Donny gets to benefit from that to help further prove those results.

Dr. P. said that he most likely will treat Donny for the advanced stage cancer because it is in his spleen.  He also said he wants to avoid radiation if we can.  Dr. P. explained is as such, “This is by no means a medical definition, but think of radiation as a slow chemical burning of your skin.  Over your lifetime, this opens you up to heart disease and other cancers.”  He said if Donny were 60 or older, radiation would be a no brainer, but because he’s so young, radiation could end up being harmful later in life.  Not that chemo doesn’t open you up to other diseases later in life, but I think chemo is the lesser of two evils, or two live saving evils.

Basically Donny’s treatment would be two cycles of chemo, or 4 rounds of chemo.  One cycle (approximately one month’s time) includes two rounds of chemo; one round every two weeks.  So Donny will most likely go through 6 months of chemo which equates to 12 rounds of chemo – 2 rounds every month.  That’s a lot of numbers...I hope you got that.  Sorry!

After two months (4 cycles) of chemo, Dr. P. will have Donny redo the PET Scan to see if the cancer has shrunk.  If it has, Donny will continue chemo on the ABVD therapy.  If the cancer has not shrunk, Donny will be put on an escalated chemo that is stronger and administered every 3 weeks instead of every 2 weeks.  This process is all part of the clinical trial.  At least 5 years’ worth of data has shown a HUGE success rate in patients who are restaged and whose treatment plans are adjusted according to what the PET Scan shows.  In fact, Dr. P. said the data is so compelling that even if Donny doesn’t choose to be in a clinical trial, he will treat Donny this way.  So naturally, Donny, his parents and I were all asking where we sign.  New studies are showing huge success rates?  We’re in!

Dr. P. also said that without radiation, there is a slightly greater chance the cancer will come back.  But he said very matter-of-factly, yet somehow jokingly because he had this crooked smile on his face, “If the cancer does come back, then you’ve bought yourself radiation.”  The success rates of curing a reoccurring cancer are almost as good as the chances of curing the original Hodgkin’s, so we all felt very comfortable with Dr. P.’s assessment and treatment plan.

 

Of course we had lots of questions for Dr. P. that he answered completely and with humor actually. We were all concerned about Donny teaching in a high school with lots of germs during chemo because he will be immune suppressed.  We also were wondering about family parties and the holidays because both our families have little kids.  Dr. P. chuckled a bit and said, “You’re going to be immune suppressed whether you’re sitting at home or going about your normal day.  So just be smart about it.  Don’t go around people who you know are sick and don’t let anyone cough in your face, and you should be good.”  He said he has a young guy who has been hospitalized twice already for bacterial infections, but that he also has 70 year olds who plow through with no problems.  So it really depends on the person.  Naturally, we were all thrilled to hear this!  Donny’s wonderful family was already planning on how they could bring Thanksgiving to him if he couldn’t make it to his cousin’s house, so I know they’ll all be excited to hear this too!

The final thing that has to be done now is that Dr. P. needs to go back and look at Donny’s bone marrow biopsy to be sure that it isn’t stage 4, which again, is very unlikely.  Then, today, Friday, November 2^nd, Dr. P. will meet with his colleagues and have them review Donny’s condition to be sure that the plan Dr. P. has laid out is in fact the best route to take.  I couldn’t believe that this is part of the process...there are a ton of doctors that deal with Lymphoma at Northwestern and they all look at the diagnosis to confirm it?!  It’s like we’re getting 20 second opinions all in one!!  I keep thanking my lucky stars that we live in Chicago and have this amazing health care available to us.  It’s truly amazing.

Now we wait...again...for Dr. P. to call Donny to let him know when his first round of chemo will be.  He said he needs to check the schedule, but that Donny will most likely be able to start late next week.

 
Until then, we are excited about Donny’s playoff football game on Saturday!!  Thank goodness he has football to keep his mind off everything, although, as I keep saying, Donny really is doing great.  He has such a great positive mental attitude and is ready to beat this!