Sharing my story

Great News!

Happy Friday!

Just got back from the Oncologist and it’s great news.   The treatment has been successful and will hopefully keep things in remission.   There is some fibrosis (scar tissue) from where the tumors were (see below) but that may or may not be absorbed by the body over time.   The next step will be to have the port removed from my chest.   The doctor will call me next week with the schedule for ongoing treatment ( which will be every 2 months for a month (once per week).   This is the new standard and has kept this type of cancer (Follicular Lymphoma) at bay longer for those who participate.    Full report is below for those who are interested.   

The best part about this news is  I dont have to go through another round of chemo this Monday – yay!   Hopefully things will start to improve with the fatigue and I can have my life back  🙂

Have a great weekend everyone.

Love, Chris 

==================================

PET SCAN (PET/CT):

CLINICAL HISTORY:   Non-Hodgkin’s lymphoma.  Subsequent treatment strategy.

TECHNIQUE:  The patient has undergone at least a four-hour fast.  Fasting blood glucose value is 105 mg/dl.  The patient is not known to be a diabetic.  Oral contrast (thin barium) was used.  The patient was injected with 19.5 mCi of F-18 FDG.  Approximately 71 minutes later the patient was placed supine on the GE discovery ST PET/CT scanner.  Images were obtained from the neck through the pelvis.  Images were processed with and without attenuation correction based on the CT generated attenuation maps.   In addtion, anatomical-functional image fusion was then performed in the standard fashion overlying the PET emission data with the CT transmission data.  The was done for precise atatomic localization of areas of hypermetabolic uptake.  Images were reconstructed in axial, sagittal and coronal planes.

COMPARISON:  PET/CT dated 10/20/2010

FINDINGS:

Reference SUV (normal liver):  maximum SUV 3.5, previously 3.4

NECK:

There has been interval resolution of previously noted adenopathy and uptake within the neck.

–  No abnormal uptake or any significant findings on the non-contrast CT localizer images

CHEST:

– There is a low grade uptake within new patchy opacities in the dependent portions of the lower lobes bilaterally.  This likely represents some inflammatory change.  Otherwise there is no abnormal uptake within the chest.

– Note:  CT images of the lungs during a PET/CT exam are obtained during quiet respiration.  Therefore, small nodules or other small focal pulmonary abnormalities may not be adequately imaged and/or may be obscured by atelectasis.

ABDOMEN/PELVIS:

– There has been interval decrease in size of soft tissue in the retroperitoneum, superior and anterior to the left renal vein.  This measures 29×15 mm on series 1 image 182, previously measuring 38×30 mm.  FDG uptake has resolved, with residual soft tissue abnormality representing posttreatment fibrosis.

– There has been a decrease in the size of mesenteric adenopathy, with mesenteric soft tissue mass now measuring 29×15 mm on series 1, image 194, previously measuring 47×41 mm.  There has been interval resolution of uptake, with residual soft tissue consistent with post-treatment fibrosis.

– There has also been a decrease in the size of supraceliac adenopathy, with soft tissue mass now measuring 25×15 mm on series 1 image 170, previously measuring 35×24 mm.  There has been interval resolution of uptake, with residual soft tissue consistent with post-treatment fibrosis.

Again noted focal FDG uptake within the proximal stomach has resolved.

No new areas of uptake are demonstrated.

MUSCULOSKELETAL:

– No significant abnormal uptake

– No significant findings on the non-contrast CT localizer images.

MISCELLANEOUS:

– No significant abnormal uptake elsewhere.

– No significant findings elsewhere on the non-contrast CT localizer images.

IMPRESSIONS:

Interval complete response to therapy.  No abnormal FDG uptake demonstrated to suggest residual/recurrent lymphoma.   Residual soft tissue masses within the retroperitoneum and mesentery show no abnormal uptake and are consistent with post-treatment fibrosis.

BIG DAY – PET SCAN

Good morning!  Early now (5:45 am) and we’re heading out of here in about 30 minutes.  Today is the big day – will check into Virginia Mason Hospital in downtown Seattle at 7 am for a PET scan.  Lucky me, I get to “enjoy” 2 huge creamy vanilla smoothies (yuck).  It’s actually a sort of dye that will show up on the radiology images and let us know how much the tumors have shrunk.   It tastes like shit.  Hoping for the best.  If they are small enough Ican take a break from chemo for a few months.  Look forward to a balanced meal later today – the last few days have been restrictive due to this test (no carbs at all).  My followup appointment is this Friday where they will give me the results.  Wish me luck!

Chris 🙂

Big Climb Results

Happy Sunday Everyone!
 
Today was the day for the big climb (www.bigclimb.org):
 
69 flights of stairs
1,311 steps
788 feet of vertical elevation

 

The Big Climb is The Leukemia & Lymphoma Society (LLS) Washington/Alaska Chapter’s largest fundraiser.  All proceeds go towards LLS’ mission to cure leukemia, lymphoma, Hodgkin’s disease, and myeloma and to improve the quality of life for patients and their families.  

 

 
 
 
A big congratulations to my buddy Mike Walter and his son Adam who ran the big climb.  He sent me this email this morning after they finsihed:
 
We did it… glad it is over.   Didn’t feel great getting up early (6am) today for the 8:30am start time, but overall it went well.  I didn’t quite achieve my goal of sub-9min. ,got close though –  9:11..  the 1st 20-30 flights sucked, then I actually felt better toward the end. I was able to push it a bit and run the last 4 flights.  I finished #22 overall (thus far) – see link. I did get a top 10 finish in the over 40 group … it is hard to compete against those darn young guys… the winning time was 7:08.. amazing!     We most proud of Adam.  He finished in just over 15 minutes which was almost 5 minutes faster than last year.  He pushed himself hard too as he lost his cookies about 15 minutes after the race.  Check out this link :
  
 
i went to the site and out of 3315 finishers Mike came in 27th overall and 9th in the masters (over 40) category.   What a machine!  I could not find Adam’s results online, but here are Mikes:
 
 
OVERALL
27.     Mike Walter     Bothell, WA     3416     M 41     9:11
 
 
MASTERS (OVER 40)
9.        Mike Walter      Bothell, WA    3416    M 41     9:11
 
 
Both Mike, his wife Debbie,  Adam and I appreciate all the friends and family that donated to his efforts and this cause .   Together they raised over $1260.  Thank You guys!
 
 Love,
Chris

Chemo Session #6

Hello –

Sorry for the time away from posting on here the last week – it’s been a busy.  Monday I awoke early to get ready for Chemo Sesssion # 6.   Dan drove me in and I ended up getting my blood work going a bit late (9am).  Saw the doctor at 10:00 (10:30 – he made me wait).  This was the first time I saw Dr Dahbi – the other oncologist.  My normal doctor was out of town for vacation.  My weight hadnt changed since last time which was good news.  The prednisone tends to induce bloat and appetite.  We discusssed the vertigo and blurry vision, which did not seem to worry him.   The small rash on my temples was due to folliculitis and should go away with a cream he gave me.    The infusion went ok – it was a late start so we did not get out of there till close to 5pm   Mike came in and got his butt whooped on Scrabble on the IPAD but had to leave before the final hammer went down on him.  Here’s the score up to that point (sorry Mike ha!).   It’s a PDL (particularly devastating loss) – considering I was all hopped up on a benadryl drip and could barely keep my eyes open)   🙂

After Mike left I passed out and woke myself up by my own snoring!  Mom was sitting there at the time and found it very funny as did a few other people in the room.  She brought lunch (sandwhich) but I was not hungry and actually did not have anything till about 3pm when my blood sugar started to get low and I forced myself.   Heidi came by before mom left and hung out before driving me back home afterwards.  Great to see everyone and have the support during the day. 

The doctor was able to give me more information on what is next.  Apparently in about 2 weeks I will be scheduled to go in and be scanned to see if the tumors have shrunk down enough for them to give me a break from chemo.  This scan will involve me fasting the day before and drinking (the day of) a special mixture (see earlier posts) that serves as a dye for the radiologist.  It’s a sugary solution that lets them see the uptake.  Tumors are notorious hogs…so when this solution is taken in, it typically will go to the tumors and they will show up on the scan like lightbulbs.  Hopefully they wont this time otherwise I could be facing up to 2 more treatments – uggh!.   I’d really like to to take a break from all of this and get back to normal over the summer.  Have my hair grow back, the bloat leave me and getting more active woul be real nice.  I will also have the option of having my port that was implanted back in October removed, which I will do.   We plan on hitting NY and then Europe this summer for a cruise I’d like to not have to worry about bumping it or lying on it funny anymore.  it sticks out about 3/4 of an inch on my upper left pec right below my clavicle. 

 I worked from home this week – which makes it convenient when I get fatigued and need to lie down for a bit.  On Tuesday I decided to take a different approach and start up the exercise (normally i wait a few days).  So I hit the beach walk with takes me down Richmond Beach Road, across the train tracks to Saltwater Park, along the beach and then back up the hill to my house – it usually takes about an hour.  I will admit it was harder than normal but fellt good to go out in the fresh air and get the blood flowing. 

Later in the day I had (mistakenly) scheduled a continuing education module for my work.  For some reason I didnt realize the test date was a day after my chemo.  Unfortunately rescheduling it was not an option as it had to be completed by April 1 and they would not be able to accomodate me.  Sooooo   from about 1:30 – 3:30 I sat in a testing center and it went fine.  I’ve been doing this type of work for almost 20 years so much of it I was able to complete by just going straight to the questions/answer portion of the test.  This test is required by FINRA every few years, so I have a reprieve for a while.

Afterwords I was ready to get the blood flowing and stopped off at 24 hour fitness for a quick weight workout.  Did some flat barbell press (only worked up to 225lbs) for 4 sets of 10 reps. then followed that up with 4 sets of Hammerstrength Incline Presses (again not going over 225lbs).  The last two things went quick as I started to get tired – 3 sets of dumbbell curls (40 pounds each hand x 10 reps) supersettted with 3 sets of tricep pushdowns (working up to 100 pounds).  50 ball crunches and I was out the door – whole thing too less than 30 minutes.  As I type this today i can feel the soreness in my chest..which means it will be worse tomorrow ha!   This type of routine (am walk) followed by short weight session in the evening is something I’m going to try for the next month (4-5x week) and see how it goes and track my progress.

That about sums up the week so far.  Hope everyone is doing well and for those in Seattle lets hope for 2 things:   for the rain to stop and a WSU win over UW tomorrow night in the NCAA Men’s Basketball Pac Ten Tournament.  Go Cougs!

Chris 🙂

Good Times

Hello –

The last week has been decent with no symptoms and better sleep.   This is fairly typical fo me – as I’m a week out from the next chemo session.   Hoping the next one will be my last  for 6 months!  Will wait and see what the scans afterwards indicate, but I’m crossing my fingers.

This weekened  was fun as Jim and Diane came up from Auburn, WA to spend the day with us.   While Diane and Paula went thriftshopping, I met Jim at 9:30 at Parker’s Casino in Shoreline to play their Saturday morning Texas Holdem Tournament.  There was 53 players with a $40 buy in and bounty chips (you get $10 for every player you knock out).   I played ok and ended up getting knocked out by this young Asian guy (he was over 18, but not 21 as he had a stamp on his hand).  Ended up in 24th place.  He beat me with 3 of a kind on the Turn when a 7 came up (which he checked).  With Ace high in my hand and nothing on the board, I was ALL IN.  Who knew the little Sh** had two 7’s in his handj???   Jim was knocked out earlier and really got the shaft.  He went all in with 2 Aces and the other player sucked out and ended up with a straight to take it all.  Bad beat.    Afterwards we grabbed some breakfast and met Diane and Paula at a little cafe in Edmonds/Firdale Village.  From there we went back to the house and started our Canasta card game with Jim and Diane vs Chris and Dan.  It was not pretty.  Lots of PDL’s (Particulary Devastating Losses) hehe.   No mercy.  A few hours later we went to Costco and bought some fixins for dinner.  A big thanks to Jim for preparing it for all of us.   We hung out until they had to leave for the Eric Clapton concert at the Key Arena (downtown Seattle). 

Daisy is doing much better and pretty much back to her normal self.  We were quite worried for about a day and half when she was in pain and not eating or drinking.  It’s pretty amazing how quickly they bounce back from such a serious surgery.     Now the challenge is to keep her calm with Duke around (as they LOVE to play and get rough).  Her stitches come out in about a week and we dont want it to happen prematurely. 

Duke was at Kim’s for 4 days and apparently had a blast with the 4 dogs they own.  He was so tired when he got home and crashed hard on the couch Sunday.  Earlier that day in Enumclaw, WA,  he participated in his first “fun” match (dog show) and did very well.  He won BOB (Best of Breed – Great Danes) and then won Group (against other Working Group Breeds that had won their BOB – see below, although note, not all those breeds competed).   Then he went into what is considered the finals (BIS – Best in Show) and wanted nothing to do with it and did not win. We have to consider the fact that he’s still a puppy at 7 months and I’m sure with the entire day at the show he was not willing to cooperate and tired of people touching him.  Either way he did very well, so congrats to both Duke and Kim. 

AKC (American Kennel Club) WORKING GROUP:

Akita Alaskan Malamute Anatolian Shepherd Dog Bernese Mountain Dog Black Russian Terrier
Akita Alaskan Malamute Anatolian
Shepherd Dog
Bernese
Mountain Dog
Black Russian Terrier
Boxer Bullmastiff Cane Corso Doberman Pinscher Dogue de Bordeaux
Boxer Bullmastiff Cane Corso Doberman Pinscher Dogue de Bordeaux
German Pinscher Giant Schnauzer Great Dane Great Pyrenees Greater Swiss Mountain Dog
German Pinscher Giant Schnauzer Great Dane Great Pyrenees Greater Swiss
Mountain Dog
Komondor Kuvasz Leonberger Mastiff Neapolitan Mastiff
Komondor Kuvasz Leonberger Mastiff Neapolitan Mastiff
Newfoundland Portuguese Water Dog Rottweiler Saint Bernard Samoyed
Newfoundland Portuguese
Water Dog
Rottweiler Saint Bernard Samoyed
Siberian Husky Standard Schnauzer Tibetan Mastiff        
Siberian Husky Standard Schnauzer Tibetan Mastiff    

 

Hope everyone has a great week .

Chris 🙂

Treatment Update

Fortunately things have been much better symptom wise since about Monday – a welcomed relief.   Even though Monday was a holiday (and off for many people), the hospitals were very busy.    It was our typical early morning as we left the house about 7:30am.  Around 8:30 they took my blood to check the counts and then I saw Dr Ahmed (Oncologist) at 10 am for the followup.   Again, she was pleased with the numbers (white blood cell count) and  how things were progressing .  Weight had dropped about 6 pounds, but most likely that was from all the water that was emptied out of my system the night before with the Lasix.  As mentioned,  no more taking that after 12 noon as it ends up keeping me awake all night peeing.    We also went over the side effects that hit me hard (neausea, blurry vision, etc) and she reminded me that the chemo is building up in my system and it tends to get more apparent as the sessions continue.  All this stuff was no surprise to her.   Regarding sleep issues she thought I should remain on Ambien and not switch over to a new one since my last treatment MIGHT be March 7th.  I’m crossing my fingers this will be true.   Mid march they will do a full scan involving dye and let me know if I can take a 6 month break from chemo.   If not, I will continue for up to 2 more sessions that would take me into the end of April.

Hope everyone has a great rest of the week and weekend!

Chris

Hello,

This week has just flown by!  With Monday being a holiday and the majority of my clients (educators) being off this week for mid-winter break, it allowed me to get ahead on the work  side.    Woke up this morning to more snow on the deck – the Puget Sound area was hit by what is considered nasty weather (East Coasters would laugh at us), so just one more thing to deal with.

Yesterday was a bit nervewracking as we took our 5 1/2 year old Dane, Daisy, in to get spayed.   She’s an AKC American and Canadian champion (CH) and International Champion who has won several BOB (Best of Breeds) before she was bred with two great ambassadors of the sport – CH Yukon (1 pup) and  GCH Spirit (4 pups).    Daisy has been retired from the show ring for a couple years now.  Here is a pic of her while she was competing:

 

 

 

 

 

 

 

 

AM/Can/Int’l Ch. Bricarlo Daynakin Cant Stop Kissin’ AOM

 

 

We ended up keeping Duke – who was from the Daisy x Spirit litter.   Spirit was the star of the Marmaduke movie that was in the  theaters last summer and was one of the first Danes in the AKC (American Kennel Club) to get his Grand Championship (GCH) title. 

www.themarmadukemovie.com

 Now that Duke is getting bigger and starting to hump Daisy (I told him we do NOT hump our mama!) it was time to get the procedure  taken care of.    Duke will be shown and then eventually neutered.  However while he’s being shown he must be “intact” – a requirement of the AKC.    The surgery went well, it’s just the anesthesia and recovery that we worry about in the giant breeds.  Last night was sad as Daisy was whining for quite a while even though she had taken her pain pills (which we had to sneak in her mouth with butter!)   I ended up sleeping next to her last night as I felt it might ease her anxiety a bit (and mine!) if she knew I was next to her.  This morning she’s lying by the fire and seems to be doing better.  Hoping she’ll eat and drink here shortly.     Duke is at our friend Kim’s (who’s also the breeder) house for several days to allow Daisy some peace and quiet to recover.

Here are some pics of Daisy this morning and her incision

Chris

Leukemia vs Lymphoma

Hello,

Found this online today – thought it provided a pretty good basic explanation between leukemia and lymphoma.   Some of you know my Uncle Marty (who lives with us) was just treated for Leukemia and have asked what the differences are.  Marty is currently done with his treatment but will be monitored closely.

Difference Between lymphoma and leukemia

 

 

Symptoms of Leukemia Symptoms of Leukemia 

Lymphoma vs Leukemia 

Both are cancers that affect a part of a human’s immune system. The immune system is a broad set of systems made of several types of cells. Leukemia and Lymphoma are diseases of compromised immune system caused by tumor growth and their distinction lies in which cells are initially affected. 

Leukemia — from the Greek word “leukos”, meaning “clear or white”, and “haima or emia” which refers to blood — is a broad term covering a disease which is characterized by an abnormal production of anomalous white blood cells. It is a cancer of the blood cells or bone marrow with numerous types and classifications. Leukemia usually comes from cells of the myeloid system that are made in the bone marrow. When tumor cells are found in the circulating blood, by definition, it is leukemia.Lymphoma, on the other hand, is a tumor of the lymph nodes that causes lymph nodes to expand. In essence, the abnormal condition starts from the lymphatic system. The lymphatic system is a part of the body’s immune system to fight infection. An invasion of other organs occurs caused by lymphoid tissues appearing where it should not. There are two major types of Lymphoma, the Hodgkin’s Lymphoma and the non-Hodgkin’s Lymphoma. 

In leukemia, the damaged bone marrow makes abnormal white blood cells which are called leukemia cells. These leukemia cells do not die when they should, thus overcrowding the system. They will ultimately crowd out the normal blood cells and inhibit their function. 

A lack of blood platelets, which are important in the blood clotting process, will result. This means individuals with leukemia may bruised easily and bleed excessively. Paleness, weakness, and fatigue are common symptoms. However, chronic leukemia has no early telling symptoms. 

Conversely, lymphoma sufferers may have symptoms similar to people with leukemia but the distinctively, people with lymphoma have painful swelling of the lymph nodes in neck, armpits or groin. Sometimes, these are the only symptoms and they start very early. 

Summary:
1. Leukemia is a tumor or cancer of blood cells or bone marrow while lymphoma is a cancer that starts in the lymph nodes or the lymphatic system
2. Leukemia produces abnormal white blood cells that crowd out normal blood cells which inhibits the normal functions of the immune system. Lymphoma invades other organs by unnecessary and uncontrollable growth of lymphoid tissue.
3. Leukemia sufferers have symptoms typical of other cancers and may have no early telling symptoms especially if chronic. Lymphoma will often have telling signs of swollen lymph nodes in neck, armpits or groin which is frequently painful. 

Rough Week

Hello,

As many of you have noticed I dont always write about my health issues – that would get old real quick.  The entries follow a range of subjects – some of which are certainly silly or insignificant, but basically just what’s on my mind or going on that particular day.   This blog has been an outlet for me to express myself and also a way to keep friends and family informed without having to ask me how I’m doing all the time – especially if you are afraid to ask.     If all I did was bitch and moan about my situation that would get real old for me as well as all for you, dont you think?  So I mix it up and appreciate all the kind feeback that has been sent my way.   Most of my health updates will be around the chemo sessions and the week following as that is when the doctors update my progress and when the side effects hit me the hardest. 

Sooooo with that set up, It’s been a rough week with side effects, so allow me this rant.  Up to this point I’ve had some of the expected reactions, but overall been pretty lucky.   However, the last few days (chemo was on Monday) were rough.  Nausea/upset stomach, blurry vision and bloat were kicking my ass.  Since Monday my stomach has been upset and continues to be irrirated.  On a positive note, the lasix (diuretic) worked it’s magic and at least my limbs are back their normal size.  It’s a strange feeling to have that tightness that comes with the fluid build up – made me reflect back on my grandmother who went through this later in life (in her 70s/80s) – poor thing.  The insomnia finally got better last night as I took the Prednisone earlier in the morning and then took the sleep aid (Ambien) about 3 hours before I actually wanted to fall asleep.  Finally around midnight it happened.  Monday I will revisit with the doctor to g0 over these issues and see if there is anything else that can be done to make life a little more comfortable.  My pharmacist recommends Luenesta vs Ambien, so that will be one question I’ll cover.  Speaking of sleep I’ll leave you with a picture of Duke (L) and Daisy (R) all snuggled up on the couch this evening.   

It’s crazy how big Duke is – his first fun match (a fun show before he is put in the show ring for real) will be in about 10 days.   I’ll post some pics/results once that happens.  Since I probably wont blog till Monday I hope everyone has a great weekend!
Chris 🙂

Can’t Sleep!!!!!!

Hello –

Here I type at past 2 am on Tuesday unable to sleep as the Prednisone is kicking my ass.  Forgive this entry as it might jump around a bit – stream of consciousness style.  Everything just feels off.  My stomach has been bothering me all day.  Not quite enough to make me puke, but riding the fine line that makes you feel like you want to.  I was a bit surprised by this as I had taken the anti-nausea pill and avoided spicy foods.   This all comes about from my chemo session this past Monday – it was the 5th session with the same routine.  We got up around 6am and mom came with for support.   She had not been to the infusion suite before and was able to see the set up and have a better understanding of what it all entails.  They took the blood levels first and then we waited for about an hour to see the oncologist – Dr Ahmed.   She seemed pleased with the numbers and we spoke about some of the side effects that were becoming more apparent.  I’m getting folliculitis on parts of my scalp – where some of the follicles get inflamed and actually bleed/scab over.  It’s annoying to say the least.  Also some skin issues on the shoulders which she attributed to the same issue.   The bloating/edema was getting more pronounced from the Prednisone and was told to take the Lasix pill if it did not subside by Wed.  So, that means I’ll take some in a few hours – assuming I get some sleep.  I learned my lesson last time when I took the Lasix in the evening and spent  most of the night walking to the bathroom to pee.  Yeah, it worked like a champ but left me exhausted.   Anyhow once in the infusion suite, I did warn mom about the first infusion – a Benadryl/anti-reaction drugs that put me to sleep.   In no time flat I was snoring and mom decided to put a pillow under my head before going on a walk around the city.  My nap lasted about 2 hours and I was awoken by Mike and Mom staring at me with lunch from World Wraps – yeah!  No scrabble this time (I’m sure Mike was relieved since he’s now 0 for 3 against me hehe), but we did get caught up on all the latest in his work situation and our dinner date we had with Dan and his wife Debbie the previous friday.   After dinner at a Mexican restaurant up the street we came back to the house and watched The Social Network.  

Great movie about facebook and very captivating – pulls you in.   In the end I was left with the feeling that he (Mark Zuckerberg)  had not stolen anything…rather he was just so much more talented than those around him.   For me, the villians were the Harvard rowing twins who were just so smug and annoying.  Unfortunately they eventually got paid $65 million in an out of court settlement.   The wikipedia write up is a good read if you are interested.   I would be really surprised if it did not win several Oscars on Feb 27. 

So after 4 more chemo IV bags we were done and we left for home around 4:30 pm.   Next session is in three weeks (March7) – I can hardly wait ughh. 

I took a couple of ambien before typing this and NOTHING – geez.   It’s 245 am now and I’m hoping my eyes will close by 4am.   I’ll write more tomorrow.   Hope everyone’s week is going well. 

Chris xo

Tag Cloud