Thursday, October 30, 2008
I got up this morning and went for a Timmy's...when I got back Diletta told me that the doctor's office had called and that my blood counts are down. What the hell? I have been told several times that the doctor gets my blood work results within 2 hours (normally within an hour) of me going to the lab. I was at the lab yesterday morning so the latest that they would have got them would have been early afternoon...Having not received any results Diletta and I went grocery shopping and did a few other things and she had some friends over. So this call disturbs me on a few levels.
First, and most importantly, my white blood cell count and platelets are down (Not sure what else?). So the doctor called in a prescription of Cipro for me. Cipro is a broad spectrum antibiotic that I am taking as a preventative measure. This also means that I have to avoid crowds, sick people...etc etc.
Secondly, I find it a bit scary that they seem to have screwed this up. Hopefully I am over-reacting. But my health is important to me and I want to know on a minute by minute basis what is going on. Wouldn't we all in this situation? I hope this isn't a symptom of other things that I should know about. I may be a boring case for them...but this is the most important case in the world for me.
This all kind of made we ansy all day... I guess bitchy is a better word. Diletta might even use another word. Ug.
Anyways...about the title of this blog entry...I think I started to lose my hair today...pubic hair that is. Of all the places to start losing your hair... hahahahahahaha...
Add to all this ... I read too much crap. I'm confused on my diagnosis, more specifically, the Grading part. I have Grade 3 (high grade) but everything I read talks about Grade 3 a or b....or pure grade 3 that is very rare. I have to ask the doctor a lot of questions Monday.
Overall, a frustrating stressful day for me (and Diletta) - with a bit of humor thrown in!!!
Wednesday, October 29, 2008
Subscribe to Life comes at you fast! by Email
Not a very exciting day...I guess that should be a good thing...
I went for my blood work this morning and there were people standing in the waiting room, that's how many people were there. The clinic is only for cancer patients and works like a walk-in; generally, there are no set appointment times. So for me, I go every Wednesday any time I want. I go in the morning to ensure that the doctor gets my results that day (the doctor gets them within 2 hours and if there is a problem, they call me immediately). Of the people in the waiting room, you can't tell that they have cancer. I have to remember this for everyday life...you never know what someone else is going through.
One thing that surprises me is the number of people with cancer. On my chemo day every bed was full (15 people) and there are chairs on the other side that I couldn't see, but I think there are about 10 of them and likely full. I wonder if they are full every day? , other than being at the cancer center, I would have no idea that they have cancer. I see a lot of middle aged couples bringing in a parent in their 60's or 70's. Once again...the majority of people are older.
Subscribe to Life comes at you fast! by Email
Diletta and I went grocery shopping today and I found myself being a bit of a germ-o-phobe. I didn't feel that comfortable with that many people around...I need to get more specific information about how germ-o-phobie I have to be...
Tuesday, October 28, 2008
Not much to update on today...
I met with Manny today, he is an acupuncturist, homeopath and a Massage Therapist. He is a great guy, genuinely kind and helping me out of the kindness of his heart. Really, we just discussed how my case came about and the drugs that I am taking. I wasn't prepared to do and treatments, I just wanted to find out some of the things he was thinking that could help me. Using acupuncture he can treat nausea, headaches, pain and likely anything else that comes up. Based on the location of the headache a different pressure point is 'pricked' to ease out the pain. For example, Kidney headaches generate just above the eyes and the pressure point is in the V of thumb / index finger. But, as I told him...my new boss is Dr. Hamm - whatever she says goes!
The other thing Manny and I discussed is eating for your blood type. The idea behind it is that each blood type have different enzymes, some of which are better at breaking down and utilizing certain foods and other enzymes that don't exist can't help break down certain foods.
Anyways...that's all I got today...hopefully the hair joke was good!
P.S. More blood work Wednesday morning...
Subscribe to Life comes at you fast! by Email
I had a great conversation with Dr. Nathalie Johnson who is a hematologist (essentially a blood doctor) with the BC cancer agency - she spent about 30min with me. A high school friend of mine who is a statitition is working at the BC Cancer Agency and has hooked me up. I have received some great insight from him as well and will likely post it tomorrow. I had sent Dr. Johnson an email that outlined my story and we discussed where we were at in terms of staging and the fact that I had Grade 3. I'll only discuss the important points that I took from the conversation.
- Maintenance Rituximab - she asked if it had been discussed yet (it hasn't) and said that I should ask my doctor about it. I will...apparently, some patients get this regiment every 3 months for 2 years post the treatment cycle that has been prescribed. This means that I could be getting treatment for 3 years. Holy Crap.
- I asked about acupuncture, homeopathic remedies for nausea, avoiding sugar, avoiding white flour, etc ... Her response: "There is no evidence" ... but they say there is, again "there is no evidence". Ug. This bothers me...I spoke with the nutritionist who says follow the Canadian food guide...eat eat eat....I've spoken with several doctors now...eat, rest, drugs...What really bothers me is that I am not doing anything to help fight this. I should eat right...but not change my diet or avoid anything. Exercise should be kept reasonable...nothing to strenuous. I guess all I can really work on is my psychology... This is still bothersome and confusing.
- I will lose my hair and it could start as early as 2 weeks after the first chemo treatment. That means that I could start losing my hair Thursday. I am pretty sure that I will be ok with that - but who knows. However, one thing that will change is other peoples perspective of me, and this has been very weird so far, as I have mentioned in other posts. People will start to look at me different and treat me different. One good thing is that it is the winter time and it is easily hidden with a toque (she said toque - so I know she is Canadian!!!..hahahaha). Funny isn't it...I have to hide it from others for their sake...She brought this up because it is a large source of stress and anxiety for a lot of patients...and that is very BAD. Which leads me to my next point...
- Keep stress and anxiety low...try to maintain a normal life. Taken out of context, this sounds weird because I have cancer, how can I maintain a normal life? But, what she had to say was very comforting...always keep in mind that there is a plan in place that is being executed and it is the means to an end. All will be good in the end!
- She has spoken with Dr. Gascoyne, who apparently is THE lymphoma pathologist in Canada. I will speak to Dr. Hamm about this. Keep in mind that any differences will likely not lead to a change in my treatment. I am interested in proceeding with this though, and will likely do so.
- In terms of Rituximab - a wonder drug (this is part of my chemo) and it has increased survival rates across the board.
- In terms of research...it is a really really good time - they are in the process of sequencing Lymphoma (mapping the very small genetic abnormalities) which will lead to the development of even more wonder drugs. I asked more about research (I will talk more about this below) and she directed me to the Lymphoma Research Foundation. I will spend some time on this site to see what is being done.
Cancer research - Does anyone wonder where all the millions and millions of dollars go that are raised to fight cancer? And what are 'they' researching? A cure? Drugs? Prevention? What should they be researching - I would think prevention...but all they look for is a cure...Why is that? Admittedly, I am not educated about this, but I plan to change that. As with myself, I feel as though I have to do something...but I want to ensure that what I do makes a difference. You will hear more about this.
I didn't meet with Manny (acupuncturist & more) today. Instead, we set up an appointment for tomorrow at 3pm. I will take what he says and discuss it with my doc on Monday.
Monday, October 27, 2008
Subscribe to Life comes at you fast! by Email
I feel 100%. Confusing.
I played squash Saturday, pushed too hard, but it felt good to do something so active. The only thing that really bothered me was the port - the muscles and surrounding area are still kind of tight, likely because of scar tissue. Other than that, I thought I was gonna barf cuz I'm so outta shape.
I'll have a few more updates tomorrow because I will be talking with a doctor in BC and Manny who is going to help me with some acupuncture and eating habits (I'll be sure to talk to my Doc before I do anything).
Friday, October 24, 2008
Today was way better.
I took extra gravol last night to ensure a good nights sleep...and it worked! I woke up a bit groggy, but it was worth it. I headed to the hospital to get my sutures out (from the port-a-cath surgery). I freakin got lost in the hospital...I finally found the NEW location of registration and they sent me along to radiology. I waited for about 5min there and walked to room 0 (zero) - who the heck names a room zero? I went in took off my shirts, she ripped off one bandage...looks good, second bandage, looks good...grabbed some tweezers and 'zip' - pulled out an inch long piece of fishing wire...all done...see ya!
Went home and showered for 15min. OH ..... MY ..... GOD! fantastic....it had been 10 days (I'm sure Diletta is really happy now too).
Valentina (Diletta's sister) came over to babysit so we could head to chemo class...so to school we went. From what I understood, there were to be presentations from a nurse, the nutritionist, pharmacist and social worker - all followed by a tour of the facility. The pharmacist didn't show up and there was no tour. This did not affect me because I had spoken with the pharmacist and been to chemo...but what about the others?
- results from blood work (cbc) get sent right to the doctor within 2hours and if there is an issue, they call you immediately
- with regard to my white blood cell count - I should avoid crowds and sick people, monitor my temperature
- Diet - nothing (same dietitian as before). This has been the most frustrating part so far...I want to know what to eat, what not to eat, etc. She just says: "following the Canada food guide" - great...
Like I said, it was general and I have been through most of it already. But now looking back at the handout (72 slides worth) not everything was covered. I hope this isn't a sign of complacency at the cancer center - but I fear it is. The presenters didn't take time to find out who was in the presentation and did not address anyone specifically. So all in all, I wouldn't say useless...but close. I feel bad for the others in the presentation that missed out on the people that didn't show up.
All in all .... I had a pretty good day in terms of symptoms. I had some weird things going on in my chest - but nothing too significant and I'm not worried.
Regarding my blog, I wanted to share some statistics. Using google analytics I can track a whole bunch of stuff...so, here is a quick summary:
- 51 people have subscribed
- 2,117 visits to the blog (some people could have visited several times)
- 6,227 page views
- 651 different people have visited
- 12 countries of origin
- 74 cities in Canada
- 20 states (in the US)
- 4:45seconds average time on the site
I can also tell the number of visits from a particular city...so if you are from say Brisbane Australia (Hi Chris, Rich and Wendy!!) I know you've been 14 times! So if I know you, and you live in a city that I likely don't know anyone else, I know how many times you've visited...and for how long...and when....kinda creepy isn't it...I wonder what google tracks on you!
Anyways...I'll likely take Saturday and Sunday off from the blog...I hope all goes well!
Thursday, October 23, 2008
Felt like crap all morning.
OK mid afternoon...
Now crap again.
Headache, Nausea, bit of stomach cramps...more nausea. Ug.
I took some drugs to get rid of the nausea...which means that I'm off to bed...getting my sutures out tomorrow (from the port surgery) - hopefully I can shower!!! Then I have 'chemo class' at 2pm - I sure hope it is useful.
Wednesday, October 22, 2008
Subscribe to Life comes at you fast! by Email
So...another great day!
Tuesday, October 21, 2008
I kind of screwed up...apparently, I missed a prednisone (steroid) pill either Friday or Saturday) and I am supposed to take the pariet with it. This might have been a problem because I was only to take 5 of the pariet (the main purpose of the pariet is to protect my stomach from the prednisone). So, we called the cancer centre to see what I should do - as per the usual, we left a message and they called me back about 10min later. Cheryl was on the phone and basically instructed me to take both pills and I can get an additional pariet before the next chemo session. No problem.
In addition - I asked about the constipation and she said that she would call in a different scrip for me. Great... (it later resolved itself) and then I asked about some of my results that were outstanding and got some GOOD NEWS (below is comprised of the conversation with Cheryl and a second conversation with Debbie - both are nurses at the cancer centre):
- CT scan of my pelvis and abdomen were negative. This is an important part of staging because if there are inflamed nodes below the diaphragm, I increase a stage (I am currently a stage 2). Bottom line, this decreases my chance of increasing in stage.
- CT scan result for my neck showed that the mass that was removed was completely removed - excellent! In addition, the lymph node that was swollen on the right side (below my jaw line) is still swollen...but smaller. Not sure what to think about this yet - but I will be speaking to Dr. Hamm about it at my next appointment.
- MUGA scan - great. This means that my heart is good and strong for chemo.
- Gallium - this scan is used to determine where the cancerous cells are. The scan showed positive results for activity in the sub-mandibular (same area where the lymph nodes are) area on left and right side - left greater than right. This means, to me, that there are cancerous cells in my neck area.
- Spinal Tap / Lumbar Puncture - as far as the nurse could tell, the results show that the fluid is clear. This is good as it also plays a role in staging.
- Bone Marrow - these results have to be interpreted by Dr. Hamm. This is also a big one in terms of staging. I won't know until I speak with her (November 2)
Then...the greatest part of the day...I received 2 packages in the mail from my cousin Kahley; 3 t-shirts with this logo on it:She made a whole bunch and is mailing them out to my family. Each shirt is customized on the back to read how they relate to me. Mine says "I kick ass"....Diletta's says "My husband kicks ass"....Isabella's says "my dad kicks ass"...how freaking cool is that!!!!!
I can't wait to post a family pic tomorrow with our shirts on.
One last note...I have been reading some positive thinking / energy books and was excited about what I read today. One of the chapters I read included a section on attitude and keeping it positive (this is something I have constantly been working on - for the past 6+ years). It also went on to talk about surrounding yourself with others who have a positive attitude and how that can make you stronger, but that you have to have the courage to expose yourself. This excited me immensly. The facebook group Don Patten created and my blog have opened me up to many many other people who continue to write me and share their positive thoughts and prayers.
This makes me stronger. Keep them coming.
Isabella Picture of the day:
Monday, October 20, 2008
Sunday, October 19, 2008
Anyways, I woke up with a headache and a crappy gut feeling, but not as nauseated. I took my steroids and other drugs, plus some Tylenol to get rid of the headache, relaxed for a bit, then took my drugs again around 1pm (as per scheduled). I felt pretty good, still crappy, but ok. Around 3pm I started to get feelings of numbness and tingling in my legs...not overwhelmingly, but still there...I kind of blew it off at first because I was walking around and driving...But it didn't go away - so I went home and read the lit on the drugs I was taking to see if this was a side effect..sure enough, it is common for the vincristine (part of CHOP) but is considered serious for Allopurinol and to call the doctor immediately if it happens...so, I called the Cancer Centre. I left a message for the on-call doctor to call me back, it happens to be my doctor this weekend, Dr. Hamm, and she called me back within 10mins. She already knew what was up and said that there is nothing I can do about it and not to worry, these are common for the Vincristine drugs that I am on - but wasn't sure about the other. She said that she will look it up and let me know if there is anything to worry about...but she is not worried. I am confident in her. 100%.
My stomach still feels weird and I have a constant headache - I guess similar to a hang over - so at least I've had experience with that (thanks James).
As for the emotional side of things....as my wife, Patrick and others have been guiding me on; I have to remember a few things. The obvious, Isabella, my wife, family and friends - I know you are all here with me. But, as for how I am thinking, I have to keep positive. The shark theory, keeping positive, praying, thinking, thoughts, relax, etc etc...all great advice and I learn something from each email, blog message, card, gift, visit, facebook note, group started, phone call, messenger message, dingleberry message and conversation. This is a struggle. And as two people just told me, the chemo will likely be the hardest part. Cancer will be gone, but the journey to beat it will be tough.
Thank you all!
Friday, October 17, 2008
This is NOT me. After the port surgery the tech did show me a very similar picture of myself, but mine is on the other side. The large round thing is what gets stuck everytime, the nurse needs to hit the center part. The long tube travels up the chest and back down to around the heart.
You can see the mass at the back of my throat on the left side of the picture.
Here is a more detailed version of Thursday...
My mom and I arrived at the Cancer Centre around 8:15am. The secretary at the front desk started into it right away...you'll do fine, you'll be OK...blah blah blah..didn't really need to hear that right then. But she was doing her best to try and make me feel alright...I was a little too anxious.
Thursday, October 16, 2008
This will be a long post, and maybe late, because it was a physically and emotionally draining day. One of the harder days of my life...I type with tears now. Ug.
I have been contemplating how is should post this, but after today, it deserves to be the center piece: READ it...really read it. Think of that scene in White Men Can't Jump - you listen to jimmy Hendrix, but do you hear him...
Ok...so it won't be a long post. I have nausea, stomach cramps, a head ache and dry mouth. I feel like I am trying pooh my bowels out and barf stomach out. I was able to get down some Kyril and that seemed to work with the nausea...but the others are still there. Anyways, so in lieu of my usual long drawn out version...I'll be shorter....
Arrived at 8:15 and got into the chemo room around 8:45 - they started me with 4 oral drugs and then IV of saline and then of benadryl. I think it was round 10:30 that they started with the Rituxan - and around 1pm it started to disagree with me. I had reaction...my shoulders started to get itchy and I got this itchy tingly weird feeling in my throat - they stopped the chemo immediately and called over some more nurses...it was kind of freaky. But, the nurses there are freaking fantastic!!!! They gave me some more benadryl another antihistamine via IV for about the next 1.5 hours...this put me to around 4pm and the cancer center closes at 5pm, which would mean that I would have to come back the tomorrow at 1pm (they set up the appointment) - but then they changed their minds and pushed me through the CHOP part of the chemo treatment. This was great...I was the ONLY person left in the cancer center and they stayed late...about 4 nurses.
I came home, had a great meal, relaxed..then those damn side effects started. And here they come again...
Wednesday, October 15, 2008
I showed up at about 9:15 for my appointment today and was not called in until about 10am - I expected a small wait because I knew that Dr. Hamm was squeezing me in. The nurse came and got me and led me through the chemo treatment area...umm...wow...was a little shocked. I had been through two other times and it was kind of empty...this time, every bed i saw was full. That is 15 beds on the one side, and I don't know how many on the other side. It was weird walking through there...Am I one of them? I don't feel like it...ug. I'm not a patient. It kind of freaked me out... I found myself avoiding their eyes and trying to walk confidently through there. I am not a victim nor will I be a patient. I think I discovered that I have a lot to learn about how to mentally handle this. But, with all the support that I have, I know I'll be fine.
The nurse took me to a room right beside the nurse station and I learned right away that I was to begin with some drug treatments - so I guess, technically, I started Chemo today...I was surprised at this and a taken a back a little. But I guess it's like ripping off a band aid...The drug is called Cytarabine Intrathecal (cytosar).
I was still sore from my port-a-cath surgery today and I wanted to wait until I spoke with the doctor before I took any pain meds. So my first question for the nurse was if i could take a T3 to alleviate the pain of the surgery (I was also thinking it might help with the spinal tap about to take place).
Dr. Hamm came in and we started the process...I took off my shirt and laid down on my left side and pulled down my pants a little. I curled up into the fetal position - getting my head as close to my knees as possible (a nurse - Maggie (awesome awesome nurse) stood in front of me to ensure that I was in the right position). Dr. Hamm gave me some freezing and then took her first shot at getting into my spinal canal - didn't quite get it. I got some shooting pain down my leg and she pulled out...try again. She got it the next time and I had to hold that posture perfectly still while she took the same (which she said was very clear - I guess that is a good thing) and then, I think, she injected the drugs. So the chemo I received was injected right in my spinal canal. Crazy. The main concern with the spinal tap is that it may leak and it can cause very severe headaches. Later in the day I got a couple minor ones...but I just took a few Tylenol and drank a ton of water. More water than I had ever consumed in a day.
After the Spinal, I had to lay on my back for 2 hours. Apparently this may or may not be necessary, but Dr. Hamm feels the most comfortable with 2 hours. So...so do I! However, my bladder had a different plan and after 1.5 hours I had to pee.
Before I left I had a great conversation with the nurse, Maggie, who gave me lots of information and answered a ton of questions. I'll attempt to remember what she said:
- I will be in the first bed on the one side (the nurses have the best view of this bed)
- the chemo tomorrow can last as short as 6 hours and up to more than 8 and I may have to come back the next day (I think this is very rare). The concern is with the Rituxan drug that my body may not agree with...
- She told me that they would allow me to ice my port first thing tomorrow morning before they tapped it to prevent pain
- She gave me a handout of the drug they just gave me
- I can bring my laptop but no Internet and no phone
- They want pictures of Isabella
On the way out I picked up my prescriptions from the pharmacy (there is one right in the center of the cancer center). HOLY CRAP. I thought I was getting 3 and they gave me 6. Ug. The pharmacist talked over each one with me and told me when to take them. Some I may not use because they are only for nausea or diarrhea. The nausea one they gave me in oral and suppository form - gross. So, they gave me Kytril (oral pill regular anti-nausea), Lactulose (oral liquid constipation), Allopurinol (oral pill gout and kidney stones), Prochlorperazine (oral pill and suppository for severe nausea), Rabeprazole (oral pill ??? - I guess I'll ask about that one tomorrow) and finally, Prednisone (oral pill steroid).
For those interested I paid $2.45 for all that...without coverage, it would have been $161.45.
I'm pretty tired and I've got kind of a Big day tomorrow...I hope it is very uneventful.
Tuesday, October 14, 2008
I had written on my calender that the surgery was at 11:30 and I wasn't sure what time I had to show up...so after my shower, around 10:15, I called Hotel Dieu hospital to find out what time to be there. The nurse quickly told me that I should be there 2 hours before the surgery...Diletta was in the shower and Isabella was downstairs...I grabbed Isabella and put her in her little rocker and took her up to the shower and took off running out the door.
I got to admitting and there were only 2 people in front of me...after registering, I was directed to the 5th floor. I waited for about 15 min in the waiting room and was taken into the recovery room. A nurse came in and took blood. Then a second nurse came in and had me sign some documents, get undressed and she started me on an IV, took my blood pressure and temp. Diletta, Isabella and Marco (Brother-in-law) came in to visit...
Around 1pm I was taken down to the first floor and into the radiology department (they need a fluoroscope to do the surgery). The doctor came out to visit me and a very quickly told me what he was going to do...shave, clean, cut, insert, close, clean and done (close to that anyways). We decided to do the port on the right side because of seat belt issues...Then a nurse came out to hook me up to all the doohickeys required for surgery...she started the anti-biotic for the port (very important because if I get an infection it has to come out), she grounded me by attaching a coil to my right calve; she attached a blood pressure cuff, she attached an oxygen level monitor to my left index finger and finally, she attached 3 electrodes (right back shoulder, left shoulder, and left mid-back). She then ushered me into the OR where I was further prepped. The put a tube in my nostrils, shaved and cleaned my right chest. The nurse then started to put me under while another nurse started to iodine my right chest and put up cloths ... and then I woke up with a port in my chest...
I was taken up to recovery where they gave me a sandwich and drink. As per the NURSE, the plan was for Diletta to come pick me up at 4pm at the side door. The NURSE told her I would be waiting there in a wheel chair...I woke up at 4:25 and had to wait until 4:35 when a nurse came in ... apparently there was a shift change and the message didn't get passed. I was a bit worried/pissed because Diletta would likely have Isabella with her, which just slightly complicates things...Anyways, we get it straightened out and Marco walks into recover. A new nurse comes in (a very chatty and helpful nurse) and starts to organize things to help me get outta there...she looks at Marco and then looks back at me "Is this your father?" ... hahahah
Oh so good!
I have a weird bump on my right chest now and it is fairly bruised. There are also incisions just above it and a bit higher close to my neck - this makes swallowing hurt slightly. I am icing it and I took a T3 a little while ago...All is ok. Apparently, this port will help significantly by eliminating all the needle pricks. I hope it works out.
Spinal Tap tomorrow morning at 9:30. Chemo Thursday. ug.
An update from last Friday's Gallium Scan...I arrived a bit early and we got right to it. The nurse came and got me from the waiting room in Nuclear Medicine and she took me to the same machine (Gamma Camera) that I had the MUGA scan. The pictures took about 30min and were to be used in conjunction with the 2nd (Single Photon Emission Computed Tomography - SPECT) and 3rd (CT) scans to be done that day. So, after this was done we walked down the hall to what looked like a CT scanner with another contraption attached. So, I lay down on the table and a large square camera is set up to take 2 sets of pictures. You must lay extremely still as it rotates 360 degrees. There were 2 pictures taken, one of my chest/abdomen and one of my abdomen/pelvis. They each take about 20min - not really a big deal, but for the first one I had to lay with my hands outstretched over my head...damn this hurt (read: man am I weak). The next one was a little more comfortable as I could move my hands/arms. Then the low radiation CT scan was done...and so was I.
I believe that they put all the pictures/scans together for one overall picture.
After this was done the tech told me that my doctor would be able to access my results by about noon...4pm at the latest because they had direct access to their computers. So, I called in the afternoon to see if they had the results...and what the tech had told me was of course not true...oh well. Probably didn't need them for the weekend anyways.
I was thinking back to my Gallium Scan and how the appointment was set up and I also went back to my notes. The person that had called me to set up my appointment told met that there was a follow up to the MUGA scan, which would likely occur on the day after (in this case the Thursday), at the same place and that they would arrange it with me on the day of the exam...This was incorrect. Now that I have learned more about what is going on, I realize that the nurse was supposed to tell me that I would only be getting a Gallium injection and that I would be scheduled for the scan at a later date (this could be 24 to 72 hours later). Either way...I think the person telling me this should know what they are talking about. Ya - this is me venting...But I'll bring it up to the nurses...as I think it was the scheduler who called me and not a nurse. I am a little perturbed at this because something similar happened on the Friday as the lady that answered the phone tried to tell me something that the nurse should have been telling me...anyways - I'll bring it up with my nurses and go from there...
So tomorrow I go for my Port Surgery. They will be surgically inserting a port (click this link for a definition) into my chest. I'm not sure which side yet...I guess that will be worked out tomorrow. The surgery is at 11:30am and apparently it takes about 30min and I'll be in recovery for about 4-5 hours. I am awake for this...but hopefully they hide it from me...or maybe not. I was very surprised at what I was able to look at with Isabella's birth...but I was stoned to the bejesus on T3's....
One other thing...I went to get my hair cut on Thursday, I was going to get it cut really short in preparation for losing my hair "at a faster rate than I already am" (There...I just saved you all the trouble of finding a joke to insert - ha......ha.......ha). I'm really not sure what to do...I'm not sure it is 100% guaranteed that I will lose it all...but think that I should cut it all off so that cancer can't take it away from me. Seems like a weird thing to say...but it might be worth one victory before I begin. On the other hand, it may REALLY feel real then. So I'm torn.
Hope you all have a great Monday (on a Tuesday)!!!
Super Radioactive Man!!!
Thursday, October 9, 2008
Diletta and I decided to take Isabella across the border to do some shopping in the States today. We drove through the tunnel, it wasn't too busy, maybe 4 cars in front of us in lane 9. When it was our turn, I saw the gate go down...great I thought, it is going to take a while. Then I saw another gate go down, then another, then about 5 more - All gates went down? What they hell? Shift change at 11:45 - seems odd? Then I see a bunch of agents come out of the main building behind the booths...ah yes, shift change. Then I see more agents come out of the booths and a bunch start walking out into the cars with little gadgets in their hands. What are they doi.....ohhhhhh.....shit. They start walking towards our car as it clicks in with me...I have set off the radioactive detector...ahahhahaha...shit. An agent walks over to our car and asks if anyone has had a medical test lately...I say yes and he leaves...All the gates are still closed.
A different agent comes back to me ... they let the car in front of me go, then he directs me to drive to the next agent, who directs me to drive to the next agent, who directs me to drive to the next agent really slowly and then I have to drive through another detector. Then, back under the bay where I am told to park my car and turn it off and put the keys on the dash board...The ask all 3 of us to get out and go inside. We go in and they have a bigger contraption that they point at me and take some readings...she looks at me funny...does it again...and again. Then she brings in the supervisor who does the same thing...they then ask me to come into the back room where they do it again, and again and again. They ask a few questions and test me again...They tell me that I am testing positive for blah blah 99 blah blah - I say ya that is what the nurse told me I was injected with. He said that I am also testing positive for uranium so they can't let me go yet...he has a protocol he has to follow (by the way...they are all extremely nice to us - very nice - I was very surprised at this). Then another agent comes in and asks how much longer they have to hold the cars...hahahahah...the gates are STILL down...hahahaha ... oops. Poor bastards waiting in line to get to the states...I can remember numerous times when I was pissed because the border appeared to be closed for a coffee break!
They apologized to us as we left, I asked if there was anything I should do in the future if I had to come across after some tests, they said no, this is just the protocol and it would happen the exact same way any time this happened. They apologized again...
Hence - Super Radioactive Man - He can close borders!
P.S. Gallium Scan tomorrow at 7:30am then off to the cottage...I likely won't write until we get back on Monday maybe Tuesday after my port surgery.
Have a great Thanks Giving everyone!
Jeff (Super Radioactive Man) Casey
Wednesday, October 8, 2008
I woke up pretty tired today, 7am, to get ready for my Gallium and MUGA scans. In the big scheme of things, that isn't that early, but I have been trying to stay up as late as possible for the past week so that diletta can sleep from 9pm until whenever Isabella needs food - which is usually around 1am. Anyways, I arrived at the diagnostic imaging department for registration at 8am and was told to go to the Nuclear Medicine department. The very nice nurse came out to get me to begin the process....and boy did I not have things right...I thought I was going for a Gallium scan and then the MUGA, which was to be followed by a follow up MUGA Thursday...NOPE.
She told me that I was to get 2 things today, the MUGA scan and an injection for the Gallium scan. This was to be followed by the Gallium scan in 48hrs...Friday. Ug. In addition, as per yesterday, I had decided that I was going to wait and get my Spinal Tap next week (instead of Friday at 9am because I wanted to be 100% for the weekend and without the proper precautions, there is a risk of a leak)...if you're confused...sorry... it went down like this:
I received an injection of a radioactive marker for the MUGA scan, to be followed up by another radioactive substance 15min later and then into the scanner. So, after the first injection, I went upstairs and outside to call the cancer center and tell them about the Gallium scan that I now had to have on Friday. As per the regular procedure, I left a message with the secretary (for every call that I make to the cancer center with a question for the nurse or doctor, the secretary takes a message and parlays it to them. Depending on the urgency, they call back quickly with an answer...). So I went back down to nuclear medicine and they ushered me into the scanning room. She injected me again and started the scan. They take three 'pictures' - each scan lasting about 10min each. It is kind of freeky as the scanner gets quite close to you. During the second scan, the nurse from the cancer canter called the nuclear medicine department and the nurses started asking me questions about what time was good for me to get the spinal (impressive how fast they move and get things done). So, they finished the scan and then injected me with the Gallium for Friday. I should start to keep track of the needles.
I then met Diletta at the Cancer Centre so that the nurses and Dr. Hamm could meet Isabella and so that we could straighten out my schedule. They loved Isabella, but who wouldn't, she might be the cutest baby on the planet (thanks to Diletta).
Dr. Runge-Morris had actually just called Dr. Hamm to discuss my case. Dr. Hamm told me that there were really no differences with what the Windsor and Detroit doctors determined. I pretty much knew this but was happy to hear the confirmation. We quickly determined that I would have my spinal tap next week, rather than right after my Gallium Scan on Friday, and that they would call me to set the appointment up. Dr. Hamm thought that she might do do it just before I started Chemo on the Thursday - I didn't really like that idea, but thought that I would at least get the Wednesday off.....we'll see about that one.
Dil and I then went to my work, Costco and Best Buy with Isabella - our first real trip out of the house with Isabella...
When I got home, there were a few phone calls...
The cancer center called and had a spinal tap booked for me next Wednesday at 9:30am - so much for the day off. The nurse did reassure me that once all the testing was done things would change...
Dr. Runge-Morris called to discuss the conference call last night. Essentially, the group agreed with the pathology, that radiation would likely not outweigh the potential side effects of the radiation (due to location in the jaw bilaterally), that staging might dictate the number of cycles which will be dependent on the results of the tests, no additional tests are required and that there are no clinical trials that she is aware of. Also, we discussed a new drug for my throat (some anti-fungal meds). With regards to my materials, she told me that the slides would be delivered back to the hospital, the CDs of my CT scan and xray would be delivered to my home and that a copy her letter would be sent to me in the mail. Finally, she said that I could call her at any time if I had any more questions.
I don't have anything booked (for me) tomorrow...Say it with me:
Tuesday, October 7, 2008
So, I got the nurses to burn me a copy of my CT scan onto a CD and off I went back home to let Diletta have a shower, visit with Isabella and grab my GPS.
On my way from WRH to home, i checked my messages and found that Lena from Karmanos called. She confirmed my appointment with Dr. Melissa Runge-Morris for 12:30. (actually, this was after she called and left a message that an appointment with Dr. Schiffer had been set up for Wednesday - she then called back and told me to ignore that and that the 12:30 was a go - confusing).
I also called Windsor cancer center and told them that I did not want to start my chemo until next week. They called me back and told me that I was booked for next Thursday - 8:30 am. This should take about 6 hours.
I drove to Karmanos and there was complimentary (for international patients) valet parking. Great. The attendant started the experience perfectly..."good day sir, have a great day and you and your family are in our prayers" - I was taken slightly aback, but in made a lasting impression (I searched him out after my appointment but he was gone for the day). I walked in, 30min early, and Lena was waiting for me (Great). I went through the registration process (seamless) and then Lena took me into the waiting room of the cancer clinic. I waited for about 30 more minutes and then my little buzzer went off.
I met the first nurse who took the basics (ht, wt, bp and temp). Basically, I met two more nurses (Lori and Kim) who took my history and discussed the process for the day. I then met with Dr. Runge-Morris who is a professor of medicine in Hematology and Oncology at Wayne State University.
The bottom line, she agreed with the basics of what Dr. Hamm has told me (diagnosis, prognosis, testing plan, treatment plan, etc.). However, the great thing about this process is that every Tuesday at 4pm a large group meets to discuss new cases. What happens is that Dr. Runge-Morris will present my case (by verbally introducing my presentation, showing on a large screen my CT scan, Xray and Pathology Slides) to a multidisciplinary team at the Hematology Conference. In the room will be radiation oncologists, oncologists, the 2 other lymphoma experts (Schiffer and Zonder) the bone marrow transplant team, new doctors, new students, all the lymphoma nurses, and others - around 25 people in total. This seems fantastic to me!
Dr. RM offered to call me right after the meeting, but I went golfing so I asked her to call me tomorrow afternoon. I asked her for a written report, which they don't normally do, and she said no problem. She will also be talking to Dr. Hamm about what was said at this conference meeting to ensure that everyone is on the same page.
So...all in all a great meeting. This is what I had thought would happen, as I do have a lot of confidence in Dr. Hamm, but think that I just needed to hear it.
I also got a call from the nutritionist at Windsor cancer center...she is going to come see me during my chemo next Thursday.
I also left a message at the cancer center regarding my spinal tap, the only appointment that hadn't been booked yet. The nurse called me back within about 30min and said that Dr. Hamm could do it either Friday or I could wait until next week, there is no urgency. If I do it Friday, it would be at 9am and I would have to lay down for at least one hour...I couldn't make a decision without talking to Diletta ... the nurse said that I could just come by her office tomorrow after my Gallium/MUGA tests and see them (as long as I brought Isabella). Done.
That's all i got...I'm tired and I have my Gallium tomorrow at 8am.
Monday, October 6, 2008
Lets start with yesterday. I went to the Detroit Lions football game with a few friends and had a great time. But man do they suck. I don't even like football, but was embarrassed to be from a city near Detroit. Anyways, we went to The Beach on the way home (a bar) and had some food, wings and sliders for me...when I got home I was suddenly very tired. Diletta had just ordered some food from a local Lebanese restaurant ... so I had to have a bit more food. So I ate...then I felt more tired...then I felt sick...Nauseated...then I dispelled all I had eaten. After that I continued to feel crappy with some hot flashes coming and going...checked my temperature and it got up to 99.1 - not very high, but still increased. Anyways, it went away and I felt fine by 11.
Then Monday arrived...Went to the dentist to get my teeth cleaned and a filling done. Because of the Chemo, hey strongly recommend that you take good care of your mouth. So I plan on getting my teeth cleaned professionally once a month for the next 6-8 months. The dentist was great - he is aware of my diagnosis and was very accommodating to get me in on such short notice (i called late last week). He also took some extra time with me to ensure that I knew that if I needed anything, that I could just ask.
By the way, I have received a ton of emails and messages that said just that. "if you need anything, just ask" - thanks to all of you!
From the dentist I went over to the states to visit the sperm bank...It went like this "hi, you know where to go, hi again, pay here, thanks, bye" - I obviously left out a major part.
Then I went to Karmanos - Ug. A little pissed still from last week because I didn't get my pathology report on Thursday. I had to call on Friday ... and she hadn't...ah, i won't get started. But, one more fact I will state is that she was on the phone with me Friday saying that she was getting my slides. I left it from her that I would be there Monday to get the slides and to find out when my appointment was booked for...
So, I called Karmanos (Lena) when I left "the bank" and no answer...no problem, I'll just show up and pick up the slides - because she obviously had already picked them up. I get there and at the front desk ask for her and she's not in today. What? The lady at the front desk actually said "This is America you either come to work or you don't" ... I laughed. Anyways, I knew she had a counterpart, Ian, who might be in. So I asked for him and the lady at the front called up and said for me to come up. He greeted me and asked how he could help...I simply asked for the slides and when my next appointment was. So we went into her office to get the slides and see when the appointment was. No slides and no appointment. hmmmm....
Ian proceeded to work the phones and see what he could do for me...he was great. Called several different people to see if he could get me into either Dr. Schiffer or Dr. Saunders - as far as I know, the top 2 guys. So he couldn't do it until after my chemo started...But what he did set me up for was an appointment for Monday afternoon with Dr. Ram Shandran. Not necessarily a lymphoma guy of the caliber of Schiffer or Saunders (as far as I know)...
In the meantime, Dr. Hamms office called and set me up with a CT scan for tomorrow at noon (Tuesday). They also told me that I have to drink a cocktail for the scan. This call actually occurred while Ian was on the phone ... and a little while after the CT scan call Ian offered an appointment with Dr. Ranji Morris - which I had to turn down.
Also in the meantime, Dr. Hamm's office called again to tell me that if I wanted to start the chemo on Thursday (THIS THURSDAY) I could...what? now? 3 days from now? ummmmm...we had plans for Thanksgiving...I just told them that I had to talk to my wife and family to see what we all thought.
So back to Ian...he was great. At the end I asked why this (what he had done for me) had not been done already? He didn't know...
I then headed back to Canada to go pick up my Readi-CAT (that is the actual name of the cocktail) for the CT Scan...but, apparently I was on the Wednesday roster and not the Tuesday roster. The lady made a quick call to see if they could just put me in on Tuesday. She referenced Dr. Hamm/Cancer Center and they said yes. She asked me if i could come in a bit earlier, 11am and I asked if they could do it even earlier...she said how about 8:30am...Perfect! She handed me the cocktail (which is about 500ml and to be consumed 2 hours before the scan followed by the same amount of water 1 hour before the scan - and I am to consume nothing 4 hours before the scan) and I was off. So I'll be up at 6:30 am to drink Readi-CAT - awesome.
I immediately called Ian at Karmanos and told him I was able to change the CT scan and wondered if he could get me the 12:30 with Dr. Ranji Morris tomorrow...he said I have to call immediately...bye. I called him back 5min later and he had set up the appointment. This is KEY-the lymphoma department at Karmanos meets every Tuesday afternoon around 4pm to discuss all new cases. Also, they are academic (research) based so they are likely at the cutting edge of all new treatments and clinical trials. So, Dr. Morris should be able to present my case that Tuesday and I will likely get a report from my appointment and from the meeting (as far as Ian understood it anyways). Either way, this is great...
I thought a bit more about whether or not I should be spending this time and money on getting a second opinion...even if I walk into the Karmano's Oncologist office and she says "Why are you here? I would do the exact same thing" - I'll give him a high five, say see ya later and leave...I just need that second expert to say yes, you are going down the right path. However, one other aspect that Ian was able to point out is that I may be able to start a different process if this chemo does not work. They will have all my info for secondary treatments - this makes sense to me and reinforces why I should seek a second opinion. btw - this costs $400. For the peace of mind...not bad.
So now to the curve ball Dr. Hamm threw at me...should I start the chemo Thursday or wait til next Wednesday. Diletta and I weighed the options....If I wait until next week I will : 1. have my port in, 2. have the weekend to mentally prepare, 3. be able to physically heal more (I am still sore), 4. get to spend thanksgiving with my family and 5. will likely have more results in terms of staging (which may or may not be beneficial). The only thing holding me back is the thought that Sooner has to be better. It has to be...very logical and certainly very important. So, I called my mom, grandma and then was able to speak to Patrick. Diletta, mom and grandma asked what Dr. Hamm thought and that I should ask her ... Patrick told me that it doesn't matter. He asked the same thing when he began to go through this...This sold me. I'm waiting till next week to start chemo.
Saturday, October 4, 2008
Speaking of which, I bet I have a mother and grandmother at home wishing, praying and being angry that they would have rather they get cancer than I. However, this is a the chance for them and my family to see how strong of a character I am and that I will beat this. I am a competitor and thrive at challenges on the course, court or field...the hospital is just turning into a place that I get to compete. I think this is a good outlook for me.
Don't be sorry for me. Encourage me.
Friday, October 3, 2008
I also made a few dentist appointments today for Monday morning. One of the potential pain in the ass side effects involves the mouth. Chemotherapy is designed to attack all fast replicating cells and the mucous on the inside of the mouth consist these. The mucous is designed to protect the body from bacteria and infection and constantly replaces itself. So, the doctors recommend that you take care of any teeth issues as possible. So I've set up the cleaning and a just in case appointment.
On Monday, I also have to make another trip to the sperm bank. I did receive the results from my first visit and all is good. Apparently I have 80,000,000/cc and 60% motility post freezing (this is normal) and they were also able to get 12 viles (normal is 3). I also called a fertility clinic in London today and they told me that it takes an average of 6 cycles to In Vitro Fertilization (IVF) so I should be good with 12...but as the nurse told me, I won't regret freezing more. I'm not sure if this is too much info...but it is all part of the process.
Anyways, I do feel much better about Dr. Hamm and how things are progressing, the prognosis and what the treatment plans are. As the days progress I find myself starting to think more about the future (past chemo) and how things may or may not change. The way I am starting to see this is that the chemo will just be a bump in the road...but the road is very long. Sounds corny, but really, this is important.
We submitted a notification to the Windsor Star today for Isabella. We finished it off with this:
"Isabella you are a blessing and have arrived at the perfect time to keep us strong."
Next week is a big week...I hope to have a great weekend!
Thursday, October 2, 2008
- Sense of humour (thanks Dora)
- The CT scan was clear
- The X-rays were clear
- My palpable lymph nodes were not swollen
Wednesday, October 1, 2008
I am eating fairly normal and was able to play hockey tonight. It might be my last time for 6-8 months... so I felt it was important that I go.
Anyways, I was set up with one more appointment for two more tests on October 8th...The first test is a Gallium Scan which is used to find where fast replicating cells are. The new standard is the PET scan, but I don't think Windsor has one. The second is a MUGA scan which will be used to test my heart function. I think Dr. Hamm mentioned that she specifically wanted to see the function of the left ventricle and that this information will be used to predict how I will respond to the Chemotherapy. The MUGA scan is a 2 day exam...so i have to go back the following day for a second test.
Tomorrow I have my bone marrow biopsy. Ug. This is an important test to help with the staging of the cancer. Positive means I get 1 point on the IPI scale and I increase 1 stage (from previous posts you might remember that I am a minimum stage 2 - we want the lowest stage possible). This is done in the hip bone. I think they freeze the skin and the surface of the bone. I have heard that the sucking of the marrow hurts like hell...but Dr. Hamm affirmed that she is really good at it. She actually said that..."no worries Jeff, I am really really good at this"..." and don't worry about the spinal tap either, I'm really good at that too". Like I said before, she is confident.
Overall, I am getting mentally stronger. I have been able to talk more easily about this and feel much better about surviving. I don't really think that is in question. One thing that I remembered from yesterday, after thinking about what I wrote on my blog, is something that Patrick said to me. His attitude was that each time he went into chemo he said to himself "today I'm going to go kick the shit out of cancer". This fits perfectly into my competitive nature. I'm going to remember this and think of it often.
One thing that I have been working on in my head is a list of Things to remember:
- Diletta, Isabella, Mom and the rest of my family
- I'm young
- I have a great support system
- The odds are in my favour (minimum of 50% cure rate up to 100%)
- Grade 3 is curable
- It was caught early
- I don't have a lot of hair to lose
I'm working on more.