Sunday, September 28, 2008

First Entry

I suppose that if you are reading this, you know that I have been diagnosed with Cancer. More specifically, Follicular Non-Hodgkins Malignant Lymphoma. When I see something I don't understand online, my first instinct is to 'google search' the term...DO NOT do this. The conflicting information is generally inaccurate and can be scary. However, the best site I was directed to is: http://www.cancer.gov/cancertopics/pdq/treatment/adult-non-hodgkins/patient

I am writing this Blog so that I can have record of what I am going through and as a means to keep my friends and family informed. I am fortunate to have a very strong support system of friends and family who I know would like to keep updated...so I will attempt to do so through this blog...

Let me start at the beginning...

August- At the beginning of August I noticed that my throat was starting to feel like I was at the beginning of getting a cold or strep throat (which I generally get about once a year). I started taking 1000mg of vitamin C and generally ignored the weird feeling in my throat.

Diletta and I travelled to Toronto on Friday, August 15th so that I could attend a Foundation meeting on the Saturday and Diletta could get her hair done! Sunday was the Cobourg Baby Shower and Diletta and I planned on going to the cottage for a few days with Grandma Elaine and my mom Lynda. On Tuesday August 19th my throat felt very 'weird' and I went into the bathroom to see if I could look and see what was going on...what I saw shocked me. It was a large lump on the back right side of throat...my first thought was "it's cancer". I came out of the bathroom to my Grandma and Diletta "I don't want you guys to freak out - but please take a look at my throat"...they both looked down there and said "that's tonsillitis"...oh, thank goodness...I'll go to a walk-in clinic when I get home to Windsor...

I proceeded to stay at the cottage that night, then I headed to my good friend Caley's house and we headed to Wooden Sticks for 2 days of eating, drinking and golfing bliss! We both tore up the course...but not is a good way.

When I got home, I went to see a Doctor at a Walk-in Clinic and that Doctor did a quick inspection and said "Tonsillitis". We discussed my symptoms, which were inconsistent with tonsillitis, and he prescribed me 10 days of Biaxin. It did nothing.

On September 2nd I went to see a doctor at the West Windsor Urgent Care Walk-in Clinic where I saw a Dr. Joclyn Warwaruk. She was awesome. She was very concerned...she ordered x-rays, blood work and called Dr. Ling (an Ear, Nose and Throat (ENT) Specialist herself to make me an appointment). Her initial thought (at least what she told me) was that it could be either an infection or an abscess and she would call Dr. Ling to determine how to treat it (ie. which antibiotic to prescribe). I stayed for the xray and then went for the blood work.

On September 3rd, Dr. Warwaruk called me (personally) and told me that she spoke with Dr. Ling who wanted to treat it as an abscess and that he wanted to see me next week. She also told me that the blood work and chest xray were clear. I went and got a prescription for Clindamycin and started taking 9 pills a day for 10 days.

On September 11th, I got in to see Dr. Ling. He walked in we chatted a bit and then he looked down my throat. He looked for about 10 seconds, slid back in his chair "we have to get that out, and we have to get it out now"....my response, was "why, what do you think it is" - he paused for a moment and said "cancer". I didn't really react too strongly at first (you all know that I'm a crier)...but it slowly kicked in. My first reaction was really...I want to get this done faster...I didn't really even give him a chance to tell me what was about to happen. We talked for a bit and I don't really remember all the details - but I do remember him saying that it was 50/50 cancer/fungal infection - but that it wasn't acting like a fungal infection. We asked what type of cancer...he mentioned quite a few (Squamish, lymphoma, throat, etc..- he didn't know). I also think that at this point I remember the gland under my right jaw being inflamed and wondering if it had spread? After a few moments, that i don't really recollect, he took us out to his reception area and booked me for surgery the following Wednesday (Sept 17) - I remember him saying "bump someone else if you have to, just make sure you get him in". He was booking me for a Tonsilechtomy at MET Hospital - a fairly routine surgery. His only concern was bleeding, as the tonsil is fairly close to the carotid artery. This is a concern for all adults receiving this type of surgery. At the same time he was calling the radiologist to get me in for a CT scan (which I assumed would be hard to get in). Diletta and I then left the office and cried on the way to the car...in the car...then some more at home. Ug.

Did I mention that Diletta is 39 weeks pregnant at this point. Ug.

Diletta and I started calling...mom, aunt Kathy the nurse, aunt Kym, Uncle Brian and friends at Medcan in Toronto. This time was a blur. In the meantime, the hospital called and they had booked me a CT scan for the next day, Sept 12 (Holy Fast). The quick bookings scared me. Why are they moving me so fast...

Sept 12, my CT scan was booked for 6:45 am. The CT scan was no problem. They injected me with the dye and everything went well. The CT scan was booked for my chest and head. When I got into the room, the tech said to me "I am a little confused at this request for only the head and chest CT scan - they left out the neck" - I was thinking in my head that I wanted to get as much scanned as possible, so I told her that the doctor told me chest, neck and head and that someone must have made an accidental omission. She said no problem and proceeded to scan all 3 areas. I also got an x-ray - which they told me is standard for getting a CT scan. I requested a copy of the CT scan and X-ray which they provided me on CD.

Sept 12, 13 & 14 - this was the University of Windsor's Alumni Weekend. Me and a good group of guys (Dante, Hackett, Piche and Lippert) had planned a somewhat elaborate weekend of lancer volleyball alumni debauchery. It was a great weekend spent with some great friends and it really helped keep my mind off things...All the guys have no idea how this weekend helped me. Thanks.

Sept 15th - Diletta had a doctors appointment today with Dr. Brkovich who told us that Isabella would be in there for at least another week (good news). Also, I called the hospital to make sure that they send the CT/xray results to Dr. Ling. I also called Dr. Ling's office to remind them to call and ask for the results...

Sept 16th - I had a pre-op appointment with Dr. Ling to discuss the CT scan results. When i got to the office I asked if they got the results and yes they had. We discussed many things and Dr. Ling spent a lot of time with Diletta and I discussing the surgery and what was going to happen. The results of the xray were great - all clear. The CT Scan noted the following:

"There is a lobulated mass arising in the right tonsillar bed measuring 2.4 x 2.5 x 4.1cm....There is a lymph node on the right anterior to the carotid vessels at the level of the mass 1.2 x 1.1cm in size which is enlarged."

He confirmed that he was going to perform a tonsillectomy and enquired whether or not I wanted him to take out the other tonsil. I asked what he thought and he said that the tonsils are often compared to one another for diagnostic purposes, so only having one would not help this method. In light of this, I just told him to use his best judgement - but I am all for taking it out.

Sept 17 - Surgery Day. This was a day surgery booked for 2:15pm and I had to be there 2 hours prior. They called me the day before and told me I was moved up for 1:00 and to be there for noon. I got there at noon and they got me right in and told me I had been moved up and would be going in very shortly. I was somewhat calm...but kinda scared. I knew that I wouldn't be getting any results for about 2 weeks post surgery. I was escorted to the pre-op waiting area. Dr. Ling came to see me along with the anesthetist and a nurse. They gathered some pre-op data and Dr. Ling once again reassured me. When I was checked in, it noted on my file that I was booked for an Adenoidechtomy and a Tonsillectomy - I enquired about this with Dr. Ling and he said it was wrong and crossed it off of my file. About 15min later I was escorted to the surgery room - this was around 1pmish (I later learned that he bumped someone else to ensure that I was able to get in for my surgery - because the hospital 'kicks' him out at 3pm).

When I woke up I was in Post-Op and I remember the nurses constantly watching me, never really leaving my side by more than 15 feet - and they were fantastic! I requested that Dr. Ling come and talk to me...the nurse said that they don't normally do this, but would ask anyways. A few minutes later, he walked in (again - he is fantastic!). I barely remember what he said (which is likely why they don't come in) but I do remember him telling me that it was not a squamish cancer and it looked more like a lymphoma type. A frozen section had been done and the pathologist was not able to make a diagnosis - Dr. Ling must have been with them because he told me that he pressed them hard to make a decision - but they wouldn't. So at this point it was still 50/50 cancer or not. He also mentioned that he thinks he got all of it out and that it looked like it had not spread to the muscle or tissue surrounding the lump. He also told me that he took out the left tonsil. I think also that my mom and Diletta came in to visit and told me a few more details and confirmed what Dr. Ling had told me. All out. Not spread.

From Post-Op I was moved to Recovery. The nurses here were great too! I was in quite a bit of pain and was requesting more drugs. Recovery closes at 8pm so they try to get you out by then. The problem with me is that I react strongly to narcotics (I get very nauseous). So they were having to give me demerol and gravol. I think I got 100mg of demerol and 50mg of gravol at around 6pm. By the time 8pm rolled around I was still very nauseated and ready to barf - the nurses were great and offered to send me to the 7th floor so I could stay the night...I opted to go home (I regret this decision greatly). I was given a scrip for T3's to be taken every 4 hours as needed.

When I got home, I was a little groggy and a few hours later I tried to take some T3's ... we weren't sure how to do this - so we crushed the pills and mixed it in with some chocolate pudding. BAD IDEA. The pudding came up...along with whatever had entered my body in the last day.

Now it was time to wait for the lab results...and hope that our little Isabella would not decide to come out until I was healthy. I was on a constant feed of T3s every 4 hours...I was not able to eat and barely able to drink water at this point.

Sept 18 - 24 - Holy crap does my throat hurt. Can't talk, can't eat, can't sleep, can't drink...ouch! T3's every 4 hours are not enough. Losing weight at about a lb a day. On the sunday I was in way toooo much pain and went to the Emergency Dept at MET hospital. They gave me a shot of Morphine and some Oxycontin. I went home and slept for 5 hours, woke up and took an Oxy...slept for a few hours...woke up and took another Oxy. These made me very very drowsy - too much so. I couldn't take these anymore, so I just started to take the T3's more frequently...now 2 every 3 hours, and sometimes sooner.

Sept 24 - WOW --- What a DAY!!!! Diletta started contractions at 2am. She had set the alarm clock for me at that time to take my drugs...she woke me up and had a contraction at the same time...we started timing them and noted the duration. I noted the timing was around 5-8 minutes...so between contractions I would run downstairs and prepare 'stuff" (unloaded the clubs from the car, loaded the car, took out the garbage, cleaned, etc) all between contractions. We held off for about 8 hours and then decided to go to the hospital...

We went to Triage and the two nurses there were great! Diletta and I had a hilarious moment to the point that tears were running down her face and peed a little...I wasn't able to talk all that well and it sounded like I had some sort of disability - the nurses were looking at me as such and Dil seemed to find this quite hilarious...It was great to see her laugh so well in the moments of intense contraction pain.

Diletta progressed quickly and we were admitted within an hour. Dr. Brkovich (Diletta's OBGYN) came to the hospital right away - which was great. She was surprised and impressed with how quickly she was progressing and thought that Isabella would be born by about 4pm. Holy crap. Diletta was in quite a bit of pain and we were quickly enquiring about the epidural - she got this around 2pm and things quickly changed. No more pain! the monitors gave us immediate feedback on the babies heart rate and the timing and duration of the contractions. All was still running smoothly...I had made the calls and people were on their way.







Isabella Elaine Casey was born at 5:48pm @ 7lbs 11oz.

Beautiful and healthy!










September 25th - I had set up a doctors appointment for today because I was in way too much pain and wanted more meds. After my experience the previous Sunday, I needed them. I went to the appointment thinking (and hoping) that we would only be dealing with me getting meds and finding out if my healing was all good. However, when I got there I asked if they had received my results...the secretary told me that they had. My grandmother was with me as Diletta was still in the hospital.

Dr. Ling came in and we chatted a bit about Isabella (I showed him some pictures) and we discussed how my throat was healing. He had in his hands the lab results and didn't jump right into discussing them - we knew something was wrong. He said my throat was healing well and I asked him for more T3's. Then he got a call from a Dr. Hamm on his private line - so he left the room and took the lab report with him. He came back in and we got into the results. He told me it was a lymphoma called "Follicular Non-Hodgkin Malignant Lymphoma Grade 3 (high grade)". I really only remember the key points from here on out...NOT A Death Sentence, Upwards of a 85% CURE rate, my chest xrays are good, my chest CT scan is good, I am young, I am in good health, likely a stage 1, grade 3 (high grade) . I was concerned about my health because I haven't been able to eat for 10 days (I have currently lost 19lbs).

Ug.

I had a few questions, most of which he answered generally, but really focused on the fact that he is not an oncologist and said that these questions should all be asked of the Oncologist - Dr. Hamm. So he had made a call first thing that morning to talk to the oncologist before I even saw him. Amazing. Seems to me that I am getting the best health care possible. He said that he hoped i would get in to see her within the next week or 2. He told us that this is the worst part of his job. He is expecting his third child in November and really feels for me. I gave him an attitude pin and told him to wear it on the right side because we have the right attitude - he put it on immediately. I also gave him a "Baby Casey 2008" golf ball (I had 10 doz ProV1's logo'ed with that).

Sept 26th - I received a call that I have an appointment with Dr. Hamm Monday Sept 29th at 12:30. WOW is that fast. Once again, I think that I am getting the best health care possible.

Sept 28th - I sat down with my wife and cousin last night (Erin who is first year med school) and typed out a list of questions to ask the Oncologist for Monday. My three main lines of questioning will be around: 1. What exactly do I have? 2. What is the prognosis? 3. What are the treatment Options?

8 comments:

Brenda said...

My family is thinking about you and your family...and we're going to pray for you and think only positive thoughts! Enjoy time with Diletta and that new baby girl Isabella (she's so beautiful)...I know you will! We're taking good care of Sabi.

Natalie said...

Too much positive in your life Jeff - Isabella (what a keeper!), Diletta (she's a keeper too!), family and friends - for this one negative. Thoughts and prayers are with you and your family, straight from the City of Greater Sudbury.

Happens that tomorrow (29th) the kids are doing the Terry Fox run. They will run for you!

Niels said...

Jeff, Amy and I are sending our most positive thoughts from this side of the ocean. We can't imagine what you're going through and can only hope that this is resolved quickly so that you can focus all your energy on your beautiful daughter. Isabella is so cute!

Sam Ifergan said...

Hi Jeff,

I know you will come out of this stronger for your family. Just stay positive.

Our prayers are with you and your family!

Sam

Shelley said...

Just think, life is like a bowl of Cherries. Enjoy the Cherry and spit out the Pit, that's just what you will do. Next thing you know you will be walking your Daughter down the aisle. You have all the support in the world, just have the right Attitude and you can beat all odds. Love to the Family.

debbie baxter said...

Wow - what a rollercoaster few weeks!! Great post .. thank you for sharing this.

Life isn't about waiting for the storm to pass...It's about learning to dance in the rain!

Sounds like you are .. Be strong!
Love from Rick and Debbie

Chuck Gravelle said...

Casey,

Positive attitudes and good vibes work wonders, stay strong!

Congrats on the baby, you'll have a great story to tell her when she's older. I must have been out when you dropped by with the golf balls?!?

All the best to you and the family, looking forward to reading the recovery updates.

Parental tip for down the road: the peas make for a nasty diaper, pretend you're sleeping when it needs changing.


Chuck, Cathi, Ethan, Matthew, Abigail Gravelle

Heidi & Jim said...

Jeff, you have been dealt this because you have the strength to handle it. Your 'take-charge' attitude towards your healing is refreshing and I admire you for it!

The power of positive thinking will take you far in this journey and I’m sure that little Isabella is making sure Daddy smiles lots and looks forward to a happy future together :-)

Lots of love and support,

Heidi