Chemo Treatment #4

Wednesday, December 26, 2012 - Treatment #4

Even though treatment took the same amount of time that it normally does, it felt like it went by fast.  Maybe it was because we were all tired from our Christmas activities.  Or maybe it was because there weren't a lot of people there when we first got there.  Or maybe it was because our poor nurse, Lily, was the only one on our floor and was taking care of about 15 patients running around like a chicken with her head cut off.  Who knows!  But everything went smoothly and strangely, I ended up having a great day.

We got to Northwestern a little before 9am, so we parked the car and went in together rather than having Mrs. G. drop us off at the front door.  Donny and his mom then went up to the 21st floor and I headed over to Children's Hospital to visit my friend whose newborn son was having open heart surgery to fix two holes in his heart.  Usually the first hour we are at Northwestern, we are waiting for Donny to get his blood drawn and for the results to come back, so I knew that if I went over to Children's right away, I wouldn't miss the doctor when he came to see Donny. 

Children's Hospital is truly a magical place with all the colors, fish tanks and interactive elevators that make noises when you press the buttons on the walls.  I almost lost it in the lobby because there was a Dad walking with his son, who was probably around 9 years old.  The boy was wearing a robe and winter cap, so I knew he was the little patient.  It just broke my heart.  And once again, I thought to myself, I don't know what I'd do if this was my son.  And up I went to go see my friend who was trying so hard (and doing a great job of it) to keep herself together while her son had surgery.

About an hour passed and I left to go back to Donny.  It was actually perfect timing because Donny had just finished getting his blood drawn when I arrived.  We waited for about 10 minutes and then got called back to the treatment room.  Since it was the day after Christmas, the staff was short and we were put in a double room again.  I actually think it was the same double room we were put in last treatment, only this time, we were on the smaller side of the room.  There was already another gentleman being treated on the bigger side.  If you refer to my last post where I said I was annoyed by the girl who was sitting so far back in the curtain she kept looked back at me when I laughed, I now know why she was sitting so far back.  The small side can barely accommodate three people and in order for the curtain to not hang over everyone, you had to move the chair back to hold the curtain away.  The man on the other side finished his treatment and left so we were able to move the curtain.  But then, Mrs. G. had the brilliant idea to ask the nurse if we could move to the bigger side, so we got to move and be a little more comfortable. 

After the move, it was smooth sailing.  The nurse came and went as she needed, to administer the "push" drugs and later to hook Donny up to the IV.  Apparently we weren't scheduled to see Dr. P. (unbeknown to me because my schedule said we were supposed to see him).  But Donny's throat and tongue has been sore and has white stuff on it, so we asked him to come see us anyway.  Especially because he didn't see Donny during the last treatment.

Dr. P. took a look in his mouth and confirmed what we thought.  Poor Donny has Thrush: a yeast infection of the mucus membrane lining the mouth and tongue. Basically, thrush is a yeast infection in your mouth, which for healthy people isn't really much of a big deal and can go away naturally.  However, for people with a compromised immune system, it can become very painful.  So, Dr. P. told Donny to start taking the medication that he just took Donny off of in addition to the swish and swallow medicine.  He said that Donny's liver enzymes are still a little high, but only by about 2 points, so it isn't anything to worry over.  He said two weeks of this medication shouldn't negatively affect Donny's liver too much.  We'll just have to keep an eye on those numbers over the next couple of weeks.   By Friday, Dec. 28, Donny said he was feeling much better and that his tongue isn't white anymore.  So the added medication must be working.

Donny gets progressively better each day and his strength and positive attitude are truly inspiring.  He has his CT Scan and PET Scan scheduled for Friday, January 4 to check if the chemo has been working.  We find out the results on January 8 when we meet with Dr. P. again.  Please say a prayer that the treatment has been working.  I am fairly confident that it has been working, but just in case, a prayer always helps!  If treatment isn't successful, Donny's chemo will be elevated from 4 drugs to 6 or 7 drugs and will be much more difficult to function with.  So say a prayer, keep your fingers crossed, or whatever you do to bring good health, because we need it right now.

Have a safe and Happy New Year!!!

Chemo Treatment #3

Tuesday, December 11

So you'd think since this was the 3rd treatment, it would have become routine by now.  Nope.  But that's ok, it's funny how things work out.  Donny's brother, Michael, ended up coming with us this time.  And I was grateful because he unknowingly prepared me for the phone call I received from Dr. P. later in the week.  Mrs. G picked Donny and I up at our apartment and drove us down as usual, but Michael came back with us into the treatment room while Mrs. G waited in the waiting room and filled all Donny's prescriptions for him.

We went back into the treatment room, which was on the other side of the floor.  Normally we are on the far south side of the building, but this time we went into a room on the far north side.  We noticed this was different but just shrugged it off because our appointment this week was at 3 pm instead of 2:30 pm like the other two appointments.  The nurse and murse (male nurse...our first one!), were different than we have normally had.  So all around, we had different people coming to treatment, different nurses, a different appointment time and a different room.  It wasn't until they had to move us to a different room about 2 hours later that we found out why everything was different this time.  Our regular head nurse, Cheryl, was out sick, so we were transferred to a different group for the day.  That explained it...

Because Donny is in a clinical trial we have to wait for his lab results to come back before we can begin treatment.  Side note - Donny has to get blood drawn before EVERY treatment to make sure all his blood counts look ok and that he isn't sick.  Normally the results come in back within a half hour.  This time however, took over an hour for some reason.  So we started an hour and a half later than we normally have the past two treatments.

Finally, the nurse comes in with the medicine and they begin hooking Donny up for treatment.  I noticed that they hooked up a different bag this time.  It was smaller and a little murky and was hooked up right away.  Normally a smaller bag with fluids is hooked up with the last dose of chemo.  My Aunt who went through a lot of medical issues with my Uncle has told me over and over to ask questions.  Question the nurses, doctors and anyone else doing something you're not sure of.  She told me it's always better to ask questions now and make them double check or explain to you rather than have them administer something incorrect and have Donny get sick.  SO, I had a mini freak out in my head but outwardly kept it together and asked the nurse what he was hooking Donny up to.  Totally nonchalantly he said, "Oh, this is just some additional anti-nausea medicine.  We increase the dosage over time because the effects of the treatment are cumulative."  Well gee, thanks buddy.  I'm so thankful that you're changing up meds on us and acting like it's no big deal. Up until this point, our nurses have explained each and every medicine that goes into Donny's body. What if Donny has a reaction or something else and I didn't know they changed anti-nausea medications?  So there I went asking the nurse all these questions:  did Dr. P. prescribed this, is this done with all patients, are there side effects, etc.  When I was fully reassured, the nurse continued setting Donny up and his treatment began.

After the first two drugs were administered or 'pushed' as they say, the nurse came back in and hooked the last medications to Donny's IV.  They also mentioned that because it was late (it was already around 5:30pm) that we might have to change rooms.  Lo and behold, about 15 minutes later, another nurse came in and helped us get our things together to make the move.  As we were walking out she mentioned, "Since it's late and a lot of the nurses have gone home, we're putting you in a double room."

Now, I feel like a spoiled brat because we've had our own room thus far, so when I say this, please don't roll your eyes.  But we were watching a movie in the other room, we could control the heat/air ourselves, and we could talk privately.  So knowing that we now couldn't finish the movie or talk really, it was a bit of a shock.  I didn't even know that they had double rooms.  And when we got to the room, the other people were already in there.  The man getting treatment weighed about 100 lbs soaking wet and looked aweful which really didn't help my positive mental attitude through this whole thing.  And he had two other people with him, so the room with us added to it was jam packed.  The one girl was completely on our side under the curtain, it was a little annoying because her head was pretty much right next to my chair and she kept looking back at me if I laughed loudly.  But again, PMA (postive mental attitude) if that's the worst we encounter, then I'm ok with it.  Some places have communal rooms that I would not want to deal with.  So we are pretty spoiled with the single or double room.

But this is why I said earlier that fate has its ways of working out.  We had never been moved before, let alone been put in a double room before.  So again, it threw off our routien a bit.  Actually, it threw it off a lot.  And if my routien had been thrown off, I can imagine what Mr. G. would have thought if this was his first time coming to treatment.  Granted, this was Michael's first time coming to treatment, but Michael is in medical school and has been in many hospitals before.  If Mr. G. had come, I think he would have been a little freaked out and would have been worried and upset with the double room because we were a little jammed in there.  Even Mrs. G. said to me when we finally got done with treatment that she was she wasn't there for the move because it would have thrown her off too.  And I have to admit, I was not happy with the situation, especially beacuse the new room we were in was freezing cold!  But I couldn't do anything because I didn't want to get Donny worked up so I tried to stay calm.

As the move was going on, the nurse brought us the results of Donny's blood work.  Again, another weird way fate played its course.  Michael, having just graduated Med School, took the sheet and was explaining all the blood work results to us.  He told us that Donny's white blood cell count was pretty much non-existent, which we already knew.  But then, he slightly furrowed his eyebrows and cocked his head to the right and said, "Hmm...your liver enzimes are a little off.  But it's nothing to be alarmed about.  Just keep an eye on that."  He then looked up at us, nodded his head and said everything else looks good.  I didn't detect any concern in his expression, so I mentally noted his comments and put the results away in my folder.

So the fate part, right...skipping ahead now to Thursday, December 13 at about 1pm, Dr. P. called me while I was at work.  Every time my phone rings now during work I jump to answer it because usually it's a doctor or nurse calling about Donny.  So I grabbed my phone and ran into the nearest conference room to answer (I don't like everyone to hear my conversations.)  Dr. P. apologized for not being able to see us during treatment on Tuesday and asked how Donald was feeling (he calls Donny Donald, it makes me laugh a little because no one calls Donny by his full name).  I talked to him shortly about Donny and then he said, "Ok, well I was calling to tell you that we are going to need to change one of Donald's medications.  All of his numbers look really good.  Obviously his white blood count is still low, but it hasn't changed too much since last time so that's ok.  But there is one thing that we often see with the anti-fungal medication Donald is on.  And that would be a slight change in the liver enzimes."  My mom has been hospitalized in the past due to a spike in her liver enzimes and it was scary.  So thank God Michael was with us for treament and forwarned us about the change in enzimes or else I think I would have had a panic attack at work. 

After treatment was done, Donny was feeling really sick.  Our appointment started late and he had not eaten dinner so I know that's why.  He's so stubborn because the second he eats, he feels better, and I kept offering to go to the cafeteria to get him food but he kept refusing.  I just have to start bringing food for him from now on.  When we got home he sat right in his recliner and laid there.  But I was starving because I hadn't eaten dinner either and it was past 8pm.  So after asking Donny what I could get him to eat (I pretty much offered to make him everything in our pantry) and he kept refusing everything, I made a bowl of ceral and sat next to him in the living room.  About 5 spoonfuls into my meal, Donny looked at me and asked, "Maybe could you make me some pasta?"  And of course, after he ate, he felt much better.  I get a stomach ache when I have Tylenol in my stomach without food, so I can't image how he feels after Tylenol, 4 different chemo drugs and 2 anti-nausea medicines in his system.  Poor guy.  But after all is said and done he remains so postive through it all that it makes everything better.

Since I've delayed posting this so much, we have treatment again in two days, on December 26.  Hopefully all goes well.  And then on January 4, Donny gets all his scans done again to check his progress!!  I can't believe it's been two months already.  These really have been the longest two months of my life that somehow seem to have flown by.  I can't beleive it.

Merry Christmas everyone!!  I'll try to be more prompt with my next post!

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!

Port Procedure & Fertility

Donny had an appointment at 10:45am this morning to get the Port-a-Cath put in.  The Port gets surgically put into Donny's chest under his skin on the right side.  It connects to a vein so the chemo can be administered directly into a vein without poking his arms ever time he needs it.  Also, certain types of chemo can burn your skin tissue.

Maybe it's just me, but when I hear medical terms like, 'Port-a-Cath', in my head I picture some cool metallic medical instrument.  I'm not sure why I continue to think this way about medical items because every time I am proven wrong.  For example, when Donny broke his leg and needed screws and plates put in, I thought those were just descriptions of the medical pieces they would really use.  Oh no...they literally took screws and a metal plate and drilled them into his leg to hold it together.  Anyway, the doctor who was performing the surgery came in and explained the whole procedure to us.  He then brought in a sample port so we could see it.  And it is definitely not that metallic instrument I had in mind.  In fact, the port was plastic and purple!!!  No, it's not purple because of Northwestern (purple is their school color), it happened to be a coincidence.  And the port Donny received was a double port.  Meaning it has two little round nodules instead of one.  The purpose of having two nodules is because the chemo will be administered through one side and other medications will be administered through the other.  I'm not fully sure why it needs to be done this way, but the doctor said something about not wanting to mix the medications and chemo.  Here are some pictures of what the port looks like:

Donny's procedure took a little longer than an hour and a half.  In the mean time, Mrs. Gelsomino and I walked around, got some lunch and read our books.  We're getting to know our way around the building quite well.  When Donny went into recovery, we were able to see him in the recovery room.  He was much more aware than he was when he had the biopsy done.  I didn't know this until right before Donny got the procedure done, but he didn't need to be put under for this procedure.  Instead, they put him in what is called a "twilight" stage.  They give Donny some pain killers, numbing medicines and anti-anxiety medications so he was slightly aware of what was going on.  Donny said he felt like he watched the whole procedure, but the nurse said he was sleeping for about 1/2 of it.

The doctor who did the procedure was so friendly and thorough.  Since Donny still had stitches in his neck from the biopsy, we asked the doctor to take those out.  The nurse said that typically, the doctors won't touch what they didn't do, but this doctor took one look and agreed to take them out if the cut was healed fully.  Of course, because Donny has been so active, the doctor was only able to take out half the stitches because the other half isn't healed.  Oh, and that's the best part about this procedure today...no stitches!  They used suture glue.  Once again, suture glue sounds really cool and technical, but all it is, is super glue for your skin.  Here are some pictures of Donny's new wounds...

  

Fertility
While we were waiting with Donny in the recovery room, I got a phone call from the fertility clinic to set up an appointment and discuss the process with them.  You may be wondering why I continue to mention the fertility clinic.  For those of you who don't know how chemo works, I'll explain a little bit (because I had no clue about this.)  Chemo basically kills any reproducing cells in your body because that's what cancer is, a rapidly reproducing cell.  The problem is that chemo doesn't discriminate between good reproducing cells and bad ones.  So that is why people loose their hair, get a grayish tint to their skin, experience stomach pain, etc.  Your hair, skin and stomach lining all reproduce on a daily basis.  Sperm and apparently the cells that produce sperm are also reproducing cells.  This means that the chemo can and most likely does, prevent sperm production and can potentially cause permanent loss of production, otherwise known as infertility.  Typically, in the majority of men, sperm production will come back between 6 months to a year.  However, in a smaller percentage of cases, it can take 5 to 10 years.  Considering that we are 26 years old, newly married and have always wanted a family, even a .01% chance of becoming infertile is a .01% chance more than we are willing to take.  So, we have an appointment tomorrow, Thursday, at 10am to get blood tests and make a deposit.  To read more about the fertility process, you can read more on Northwestern's Oncofertility website: http://oncofertility.northwestern.edu/

I forgot to mention, in 2006, Dr. Theresa Woodruff at Northwestern coined the term "oncofertility".  Oncofertility basically combines cancer research and reproductive research to expand options of reproduction for cancer survivors.  All cancer patients being treated at Northwestern are contacted by a 'fertility navigator' who walks them through their options for reproduction in the future.  It is such a comfort to both Donny and I to know that our doctors are conscious about preserving sperm so we are able to have kids some day.  Most likely we will not need to use the specimens we freeze, but it's better safe than sorry!  I was talking to Mr. Gelsomino (who likes to refer to our unborn child as "little Donny") about these appointments and he said to me, "Well, you'll just have to freeze little Donny for a while."  I was cracking up!   At least everything is trying to keep a positive attitude about all this craziness!

Overall, it was another long day at the hospital and Donny is definitely sore tonight.  But God forbid he missed football, so bless his heart, since he wasn't allowed to drive, he had his mom drive him to football practice and his dad drive him back home.  Donny is one tough guy and is determined to go to football practice every day, regardless of how tired he is.  His strength definitely keeps me going.

Tomorrow's schedule is:

10am appointment with the fertility doctor - to discuss the process and ???
11am appointment with the fertility lab - to get blood drawn to test for HIV and other diseases like Hep B, etc.
1pm appointment with Dr. P. - hopefully to get a treatment plan and a final diagnosis

Tests, test, tests

Today Donny had 4 different tests scheduled at the Galter Center where all of Donny's appointments will most likely be from now on:

1. PET Scan (scan of the full body to determine if there are tumors anywhere else in his body)
2. Heart Echo (to make sure his heart is strong enough for Chemo)
3. Pulmonary Scan (to make sure his lungs are strong enough for Chemo)
4. CT Scan of the Chest, Abdomen and Pelvis (to determine how large the tumors are)

Mrs. Gelsomino picked Donny and I up and we left our appartment at 5:30am.  Donny's first test was scheduled for 6:30am so we needed to be there by 6:20am.  Of course, there was no traffic that early in the morning, so we were in the waiting room at Northwestern before 6am before any of the employees were even there.  Now, I know I am not always prompt, ask any of my friends or family and they'll agree that I'm often a few minutes late to things...but shoot, it was so early in the morning that I did not want to be THAT prompt.  After 6:20am the employees begin to trickle in and Donny is called up to the front desk to sign in.  Our appointment time comes and goes and Donny, his mom and I are all a bit anxious because his other 3 appointments were scheduled back to back.  Finally, at 6:55am, Donny gets called in for the PET Scan.

From there, the rest of the day went by pretty fast.  Mrs. Gel and I had some great quality time together and some delicious Starbucks coffee, which is conveniently located on the first floor of the Galter Center.  We had about 75 minutes before Donny's final test, so we decided to acquaint ourselves with the building a little bit.  For those of you who know Donny and I, we are food lovers, so when we walked over to the cafeteria, we weren't expecting anything special.  But were we wrong!  Holy cow, this was the cafeteria of all cafeterias!!  There was a full Sushi bar, sandwich bar, hot meal bar, pizza bar, salad bar, coffee bar, dessert bar...you name it!  As tempting as it was to eat there today because we were all starving, we decided against  it.  I'm sure we'll be eating there plenty of times in the future.  Take a look at the pictures below, I documented it all of course :)

As we were waiting for Donny to be called for his final test, I got a call to schedule his port-a-cath outpatient procedure.  The only open time that worked for Donny was tomorrow (Wednesday) at 10:45am.  Oh, and our appointment with Dr. P. on Friday got pushed up to Thursday at 1pm.  So Donny will have everything but the fertility meeting done by the time we meet with the doctor and get the official results and treatment plan.  We hope that by next Friday he will begin Chemo, but we'll find out more on Thursday.

Donny finally got called into his last test and it took forever. He thinks they forgot about him, poor guy.  They took him into the back, brought him down a hallway and into another room. Then he had to drink barium so the scan would pick up what they needed and wait an hour. Well, the hour passed and they hadn't come to get him so he walked around to try to find someone and no one was to be found.  An hour and 45 minutes later, Donny had the scan done, which took less than 10 minutes.

Then the day was over.  We each went to work and went to bed early.  It was a long day, and tomorrow is going to be even longer with him getting the port put in.  They have to put Donny to sleep and perform minor surgery to put the port in, so there is a long recovery period.  Although Donny plans on going to Football practice tomorrow night.  We'll see about that...hopefully all goes well and he isn't that effected by the anesthetic.

Until then...

The Dunkin' Donuts Coffee Bar was my favorite I think...

 Sushi Bar...YUM

Sandwich bar...like a sacked lunch.  Num num num num

Have you ever seen a cafeteria nicer than this?  Please share!!

View from Northwestern Memorial Hospital

I just can't say enough about this wonderful place.  You can't tell me this isn't therapeutic!  

Night and Day

I didn't write about this yesterday, but after our visit with Dr. K. at the hospital we were at, I left with an overwhelming feeling of doom.  Not doom for Donny's life, but more like an intuition that was screaming in my head, "get out, get out of here now!".  First, we walked into the small waiting room that was so crowded there wasn't a corner to stand in.  Then, we waited for almost 1 hour to see Dr. K., who by the way, never called us to tell us the official results.  The appointment was fine, as mentioned in my earlier post, but then we were sent on a wild goose chase to get Donny's medical records.  For the appointment at Northwestern, we needed to get all of Donny's medical records and bring them with us.  We had to go to 3 different departments to get all the information we needed.  Now that doesn't sound like a lot, but this hospital is like a maze and it's dark and dingy and the people at the front desk had no idea where we needed to go.  When we finally got to where we needed to be, the people we ordered the records from looked at us like we were aliens speaking a foreign language.  There was a temp at one of the offices who had no clue what we were trying to order.  Basically, it was a nightmare and I wanted to jump out the window.

I joked withe my mom that night that I made her angry face because the second we walked out of that place, I looked at Donny, pursed my lips and through my gritted teeth said, "we are NEVER coming back here again."  I think I surprised Donny by my reaction, but the anxiety and dread I felt over staying at that place was overwhelming and upsetting.  Sometimes you just have to trust your intuition.  And I know Mrs. Gel was on my side because she was shaking her head in agreement.

Last night I didn't sleep well.  The feeling of doom just wouldn't leave me and I kept waking up to check on Donny who slept like a baby.  I think we've been taking turns sleeping well.  One night I'm fine, he's not, the next night he's fine and I'm not.  It's weird how that has been happening.  But I knew that we were going to Northwestern today so I think I was a little anxious about that too.

Today, I got to work early and it was the longest two hours of work.  All I wanted to do was go to this next appointment because it just had to be better than the day before...it had to be!  And you better believe, it was like night and day!  THANK GOD!  I feel like a huge weight has been lifted off my shoulders.

Heaven on Earth
First, door to door (from my office to the doctor's office), in bumper to bumper traffic, and having to park 8 stories up, it only took us 25 minutes to get there.  Although, it was a pretty long 25 minutes because Donny, his parents and I all drove in one car and all our nerves were on high alert.  So between people in front of us who can't drive, Donny and I giving Mr. Gel directions, and trying to find a place to park, it was an interesting ride to say the least.  I have to say though, I think Donny was the least nervous of the 4 of us.  He has been so strong through all of this, I think he's had to comfort us more than we've comforted him.

Second, we walked into the office on the 21st floor and were greeted by three lovely receptionists.  Donny checked in and was given a buzzer and a purple folder.  The buzzer had a number on it that would be called when they were ready for us, but just in case we didn't hear them call us, the buzzer would go off.  The purple folder had a description on the front of what we needed to do with this folder.  Then on the inside, there was another description about all 4 forms that were included.  These weren't forms like we're used to though, all of Donny's personal and insurance information was already printed (from a computer) on each form and he didn't have to fill out anything...he simply had to sign in 4 different places.

Third...well I could just keep going and going.  The place was spotless, organized, friendly, had a BEAUTIFUL view of Lake Michigan, everyone was professional and even though it was crowded, it somehow managed to feel personable.  So again, like day and night from the day before.  In fact, it was so wonderful that my feeling of doom turned into a giddy joy.  I felt like a little kid ooohing and aweing at how pristine this place was.

Ok, so on to Dr. P.  Wait, first, one point...yesterday we waited for almost an hour to see the doctor. Today, Dr. P. was in the office talking to us within 5 minutes of our appointment time.  AMAZING!  Dr. P. sat down and asked how he could help us.  Donny explained what was going on and Dr. P. took a look through the blood work, pathology report and CT Scan.

'Large Mass'
Let's revisit my post from yesterday over the anxiety I felt from Dr. K. continuously saying that Donny has a 'large mass' in his chest.  Well...let's just say that he was right.  Dr. P. pulled up the CT Scan, took a look through it and asked for the chest CT Scan.  We all looked at each other in confusion because we thought he was looking at it.  Apparently the other hospital only took a neck CT Scan.  We told Dr. P. the story about the 'large mass' that Dr. K. kept talking about.  So Dr. P. scrolled all the way to the last slide and found an image of the top 1/3 part of Donny's chest.  He measured the mass and it is roughly 16 cm or 7 inches.  A ruler is 12 inches...take a ruler out and put it against your chest...it's quite a 'large mass' that it covers.  So, I had to admit, that Dr. K. did know what he was talking about in that regard, but it could have been communicated in a better way in my opinion.

Clinical Trial
Anyway, Dr. P. told us that he would be reevaluating everything to give a completely separate diagnosis than what we've already received.  He also said that judging by the CT Scan and the pathology report, he's fairly certain that the diagnosis is correct.  Then, he went on the computer and pulled up a chart to show us a possible treatment plan that he would like to try.  ECOG - it's a clinical trial going on at Northwestern right now and he would like Donny to be a part of it.  (I don't know what ECOG means by the way...sorry).  Basically, what it means is that Donny will go through treatment, but have more PET Scans (full body scans) throughout the process.  He'll get a PET Scan, go through 2 rounds of Chemo and get another PET Scan.  If he reacts well to the Chemo, then they can either continue or decrease the amount of Chemo needed.  If he doesn't react to the treatment, they'll increase his Chemo.  This sounds like common sense, right?  Well, apparently it's not.  A lot of people go through regular Chemo and don't know how it's worked until they are through with 4 - 6 months of Chemo.  So, naturally, Donny and all of us were thrilled and ready to start tomorrow.  Also, I should mention, that because of the 'large mass' (7 inch mass), that Donny will most likely need radiation after the Chemo is done.

We were all anxious to get treatment started, but thankfully, Dr. P. told us that Donny has probably had cancer for a while and reassured us that he doesn't consider Donny's case an emergency.  He said he wants to make sure the tests are reevaluated properly before we rush to any type of treatment.  However, Dr. P. did say that Donny will most likely begin Chemo within 14 days.  So we know, in the next two weeks, Donny will begin his treatment.

Finally, before we left Dr. P. scheduled 6 different things for Donny.  So there I am, frantically writing down what tests I'll need to order and slightly starting to panic because scheduling this stuff is very time consuming. But then Dr. P. said, "I'll put these orders in and the people at Patient Services will schedule it all for you."  I was ready to cry, I was so relieved!!  We sat with Cammy in Patient Services for nearly 45 minutes while she scheduled all the tests for us!  It was such a relief!!!  And in the mean time, Donny got his blood drawn for the blood tests the doctor ordered.  And, the Port-a-cath and fertility people will call me to set up appointments, I don't even need to call them!!  I love love love Northwestern Memorial Hospital already and I am so thankful to all the people who recommended us to go there!

Next Steps
Tuesday, October 30 Donny will be getting 4 tests:

1. TTE Scan (Echo of the heart to make sure his heart is strong enough for treatment)
2. Pulmonary Scan (Of the lungs to make sure they can handle treatment)
3. PET Scan (3D image of the body to make sure there aren't tumors anywhere else).
4. CT Scan of the chest, abdomen and pelvis (Not sure why he needs this and the PET scan, but the CT Scan will also show if there are tumors anywhere else in the body).

Friday, November 2 Donny meets with Dr. P. again for the official second opinion.

In between Tuesday and Friday, the bone marrow results will come in, so we'll know if it's Stage 4 or not. (If the bone marrow comes back positive, it means the cancer has spread and that it's in Stage 4).  Don't worry though, Stage 4 is just as CURABLE as any other stage.  Also, if it is stage 4, the treatment plan will most likely change...to what, I don't know...but it will change.

Today was an emotional roller coaster of anxiety and relief.  And after it was all said and done with, I just broke down and cried.  It's so comforting to feel like Donny is in the right place.  I think we all felt a huge pressure lift off our shoulders because we had found the place that felt right.  Donny even admitted that he feels more comfortable at NMH with Dr. P.

Thank you again to everyone for the love and support.  Donny is blessed to have such wonderful people in his life.  He is so strong that he was comforting me tonight.  I'm very lucky to have him and I'm very thankful to NMH because I know they'll take care of my man :)

Official Results, Tentative Treatment Plan & Bone Marrow Biopsy

Wednesday, October 24, we had an appointment with Dr. K. to get a bone marrow biopsy, to get the official diagnosis: Classical Nodular Hodgkin's Lymphoma and to discuss the treatment plan.

Before coming to the appointment, we knew that Dr. K. wanted to take a bone marrow sample, which is supposed to be a painful process.  So, after talking to a LOT of people (doctors and lymphoma survivors included), I thought Donny should wait until we talked to the doctor at Northwestern before he got the bone marrow biopsy done.  So Donny and I discussed it and (I semi-forced him) agreed that we wouldn't get the bone marrow biopsy done.  In fairness to me, Donny's parents also agreed that he should wait.  We are going to Northwestern to meet Dr. P. on Thursday, October 25 (tomorrow), at one of the best cancer centers in the country, so we all felt more comfortable doing the entire process there.

Treatment Plan
Dr. K. said before he can plan out a definite treatment plan he needs to determine what stage the cancer is in.  To do this, Donny needs a PET Scan, a scan of the whole body, to make sure there are no masses anywhere else in his body. If there are masses below is diaphragm, the cancer is at least stage 3.  The bone marrow biopsy is done to determine if the cancer is in stage 4 (the test would have to come back positive).  Donny will also need a MUGA Scan, a scan of the heart, to make sure it's strong enough to handle chemo.

Even so, Dr. K. presented a tentative treatment plan: 4 - 6 months of chemotherapy, followed by radiation to the chest because according to him, there is a 'large mass' in the chest.  I put 'large mass' in parenthesis because Dr. K. continued to repeat this phrase over and over again as we listened to the treatment plan he was proposing.  He also proceeded to tell us that this 'large mass' could potentially effect Donny's heart and lungs if we didn't act quick enough.  I knew that the CT Scan was not good, but hearing 'large mass in the chest' over and over again really got my anxiety going.  And I wasn't the only one this affected.

When the doctor stepped out for a minute, Donny, who has been extremely positive and strong through all this, started listing out how long it will take to reschedule the bone marrow biopsy after we got the second opinion at Northwestern.  He then continued to list the timeline of how long it would take to get the other 2 scans, wait for those results, go see a fertility doctor, and finalize a treatment plan before he could actually start treatment.  Donny is extremely laid back and relaxed so even though he was seemingly calm while listing out this timeline, I could tell he was anxious and nervous about waiting on the bone marrow biopsy.  Donny's mom picked up on this too because we both just looked at each other and sighed and let Donny get the biopsy done.

Bone Marrow Biopsy

For those of you who don't know what a bone marrow biopsy consists of, here you go.  The doctor rolls you on your side, pulls your shirt up, your pants slightly down and pokes around in your lower back to feel for your hip bone.  He then takes local anesthetic and sticks a needle in your back to numb the area.  Since Donny is a big, strong guy, it took 3 vials of anesthetic (most people only need 1) to numb his back.  But he doesn't just stick the needle straight in your back, he sticks it in sideways and repeats in a circle around the hip bone area.  It was like watching liposuction (if you've ever watched a makeover show, I'm sure you've seen this), but with a needle, which to me, sounds more painful!!  After that, the doctor took another needle and shoved it in Donny's back has hard as he could.  When he thought it was in far enough, he attached a syringe and counted down to 3...apparently sucking the bone marrow out is the most painful part.  One, two, three...nothing happened.  At this time, I didn't even realize it, but I was holding my breath.  The doctor pulled the needle out, wiped the blood off and shoved it back in even harder this time. One, two, three....Ahhhhhhh!  This time the syringe slowly filled with blood.  It felt like 10 minutes, even though it was probably only 10 seconds, but it couldn't have felt good because Donny was audibly in pain.

Thank goodness Mrs. Gelsomino was there because she and I were squeezing each other's hands so hard that I thought I had broken her hand.  I felt like I was in a horror movie watching all this.  My right hand was squeezing Mrs. Gel's hand, my left thumb was plugging my left ear and my left hand fingers were blocking my view of the doctor and Donny (they were off to the left side of the room, so I had to look to the left to see). When I wanted to see, I spread my fingers slightly to take a peek.  But it was all over, so Mrs. Gel and I took a deep breath and started to relax.

"Almost done.  That was the liquid part. Now I need the bone."  Dr. K. said.  And then walked to the bone marrow kit and pulled out the most massive needle I've ever seen in my life.  Mrs. Gel and I gasped and starred in shock.  (Scroll down for pictures of the needle and bone marrow kit.)

Dr. K. clearly read our expressions and reassured us, "Don't worry, this part isn't as painful as the first part."  And he was right.  The second part wasn't as painful for Donny, but it was more painful for me to watch.  Imaging how you look when you can't get a jar of tomato sauce open.  Twisting the metal cap as hard as you can, your face turning red, your teeth grinding...that's how the doctor looked trying to get this giant needle into Donny's back.  Donny was wiggling back and forth trying to brace himself while Dr. K. was twisting and shoving the needle as hard as he could into his back.  Finally, Dr. K. hit the bone and got what he needed.  During this process, the nurse was telling Donny to take deep breaths.  And I found myself doing the deep breaths right along with them so I wouldn't pass out. In and out...heeeee hoooo heeee hoooo.

Donny was a trooper and took it like a champ.  Although he's been a bit sore tonight, Donny said it wasn't as bad as everyone said it would be so he was relieved.

Dr. K. said he would be very surprised if this biopsy came back positive and that Donny is one tough guy with healthy bones.  Donny's so tough that he bent the giant needle...take a look:

Here's a look at the bone marrow kit after the test was done and the samples were put on the slides:

Tomorrow we meet with Dr. P. at Northwestern.  I'm really looking forward to going down there and seeing what plan he lays out for Donny.