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.

A waiting game...

After the biopsy on Friday the only thing we could do is wait.  We had to wait 3 whole days.  And let me tell you, if you didn't know already, waiting sucks. The anxiety and wave of emotions that I went through was unreal.  Again, thanks to the surgeon, I had already prepared myself to think that Donny has cancer.  It was just a matter of figuring out what type of cancer Donny has.  The goal was to stay busy the whole weekend so I wouldn't have to think about it too much.  I managed to do this Saturday and Sunday.  Between Donny's football game on Saturday (St. Pat's beat St. Viator...go Pat's!!!) and shopping with my mom and Grandma all day Sunday, I managed to stay positive and stay active.  My family and friends that I talked to that weekend asked me how I was keeping it all together.  I can't really describe it, but it's like I put a box over my head.  Within that box, I could only think positive things: no matter what type of cancer Donny has, everything will be fine.

Sunday night as I started to drift off to sleep, that box slowly started to dissolve and the anxiety and fear began to set in.  I've been with Donny for 7 years. He is the only man I have ever been in love with.  He is my rock, my best friend and the one I need in my life.  If anything were to happen to him, I would surely fall apart. For those who don't know me, I've been through a lot in these last 7 years and Donny is the one who has gotten me through it all.  My mind started to wander: if this diagnosis isn't lymphoma, what could it be?  There's definitely something there in his chest.  Could it be something worse?  Lung cancer? Some other cancer that I don't know about? Is he going to die? What will I do with myself without my second half?  Everything that I was able to block out all weekend came crashing through my mind and the anxiety was too much to handle.  I could feel the panic attack starting to come on.  And that's when I forced myself to snap out of it.  Deep breaths and visualizing the wall on each side of my head closing back around it to block out the fear.

My mom always says, "You can't borrow trouble."  This weekend that has never been so true.  If you worry about all the things that could happen, you will worry your life away.  The more I worried, the less I could function.  And the last thing Donny needs is to start worrying about me.  So I pulled myself together and got some sleep.  In times like these, sometimes you can only take life one day at a time.

Work on Monday was rough.  I was a nervous wreck the whole day, so I can't imagine how anxious Donny was.  Although, it was a productive day because I was so anxious I think I was moving 100 miles/minute.  I got my work done and managed to set up an appointment at Northwestern Memorial Hospital with a lymphoma specialist to see Donny for a second opinion.  It is such a relief to know that we are going to NMH for treatment.  What a process this has been.

Finally after waiting all day Monday to hear from the doctor, I got a call at 6:45pm confirming what we thought: Donny has Hodgkin's Lymphoma.  It was the general surgeon who called though, so he didn't want to tell me much more.  He said Dr. K., the Oncologist, would tell us more details at our appointment on Wednesday.

So the wait was over and a small relief set in...for about 10 minutes.  Then the waiting for the official report began...

Frankin-Donny

Donny's mom took him to get his biopsy done on Friday, which eventually turned into his aunt, uncle, mom and dad all waiting for Donny to come out of the recovery room.  The love and support we have is completely overwhelming and wonderful.  It's amazing how many people have already reached out to us.  We are truly blessed.

Anyway, back to the biopsy...it turns out that one of the only places in your body that a nerve intertwines in your fat is in the side of your neck.  Because of this, it is slightly more difficult for a surgeon to see the nerve. And ironically, the lymph node the doctor was taking out happened to be right next to that nerve.  And that nerve controls the motor function of your arm and shoulder.  During surgery, if the nerve is even slightly bumped or touched, Donny could have a droopy shoulder and arm for 3 to 4 months.  If the nerve is cut he could have a droopy arm or shoulder for the rest of his life.  So, Donny's surgeon made a slightly bigger than necessary cut to ensure he could see the nerve at all times during the surgery.  Scroll to the bottom to see the incision.  Of course Donny loves his new wound...he was joking that he can be Frankenstein for Halloween. At least he has a good attitude about it all!

When the lymph node was successfully removed and Donny was in recovery, the surgeon went out to talk to Donny's parents. At this point we were still hopeful that Donny didn't have cancer and that instead, it was a virus that attacked his lymph nodes.  But the doctor said that based on the way the lymph node came out he was 95% positive that it was lymphoma.

Thankfully, the surgeon told us this ahead of time because there was a large part of me that was holding onto the hope that it was just a virus. When the surgeon said this, I immediately changed my mindset to thinking it was cancer.  Hope is a powerful thing that can get you through almost anything, but hope can also be a hindrance to moving forward.  Hope can hold you back from looking at the truth.  So I am very grateful the surgeon told us this ahead of time because all signs pointed to cancer, but I was hoping it wasn't.  With the surgeon's insight, I was able to get rid of that false hope and prepare for battle.

WARNING:  Semi-graphic pictures below.  We counted about 15 stitches.  How many can you see?

You can't plan for life.

I haven't always been a planner, but thanks to my college friends and their excessive planning, I learned how to be.  And after graduating college, my 10 year plan was this: get a job, get married to my long time boyfriend, possibly get a masters degree, buy a house and then, the ultimate goal: start a family with lots of babies (my husband, Donny, doesn't agree with the lots of babies part...we'll take it one at a time).  But it's funny how you can't plan for life.  I should have known after all the craziness that I've already gone through, but then again, you just never think it'll happen to you.

After a short five and a half months of being married to my best friend, we found out that Donny (my husband) has Hodgkin's lymphoma.  You can read more about Hodgkin's lymphoma on Northwestern Medical Hospitals website because I can't tell you much about it as I am learning about this disease myself.

It all started with fatigue.  Donny has been really tired these past few months, but we just figured it was because it's football season.  Then we found the lump on the left side of his neck.  The lump was about the size of the tip of your thumb...well, the tip of my thumb, not Donny's thumb.  Anyone who knows Donny, knows he's got some massive hands :)

Monday, October 15, Donny went to his regular doctor to ask about his fatigue and the lump.  The doctor did some blood tests and everything came back normal.  But any time you're dealing with lumps, it's always better to be safe than sorry, and luck for us, his doctor made Donny get a CT Scan.  Since the blood work came back fine, we really didn't think much about the CT Scan other than it being a precautionary measure.  So you can imagine how shocked I was when Donny texted me saying his doctor called and told him to go see an oncologist (cancer doctor) immediately.

Thursday afternoon we saw the oncologist, Dr. K., who very optimistically told us that this could be Lymphoma or just some strange virus and not to worry.  Dr. K. also suggested we go see a General Surgeon because he needed a biopsy of the lymph node in order to determine what it was.  We saw the surgeon, who really calmed us down by assuring us that no matter what type of Lymphoma it is, it's 100% treatable and 95% curable, and scheduled the biopsy for Friday, October 19.