Year 2 Day 270 Tuesday

Day started well, got to work a little early to get tomorrows prep done.

 

At 8:20 went to check in.

 

At about 8:30 Doctor came in explained how he was going to numb my skin below left collar bone, slit me open like a fish and pull out port.

 

There was a small stinging as he numbed me up.

 

Didn’t feel the cut much.

 

Then began the tugging and pulling, at one point his assistant had both arms holding me open from to different angles. While the doctor clipped, tugged and pulled.

 

I was unable to watch the procedure, mostly just observed the ceiling.

 

Then it was over, I asked if I could have the port. They cleaned it up and sent me out with it cleaned up and in a plastic bag.

 

The port itself is kind of heart shaped, so that was kind of fun for Valentines day. If you tie the blue tube to itself it could be a bracelet with the injection port dangling like a heart shaped charm.

 

Anyway, was fully clothed chatting with the doctor about what to expect and what he was going to do to me at 8:30am and back at my desk ready to work by 8:57am.

 

Eazy Peezy and I scored at take home prize!

 

Hope everyone is enjoying life!

Year 2, day 255 (01/30/2017)Monday

Last Friday they did a CT scan and took some blood.

The first few times I got scanned, I was anxious about the results, this time I really didn’t think much about it over the weekend.

After work today I had a video conference with my oncologist.

He indicated that my LDH blood level had been higher than normal since I had been diagnosed, even a few months after my stem cell transplant. But now my levels have dropped into the normal range.

Additionally my lymph nodes appear to have shrunk a bit more around my intestines where the activity was before.

My doctor for the first time “feels really good” about the possibility that I may be in full remission. (this is a first for my treatment)

Soooooo, I will be losing my port the APE XXXL 2000 soon, the order was placed and I am told it is an outpatient procedure that can be performed during an office visit.

I suspect for infections sake they will not allow me to keep it as a memento. I am not too broken up about it.

Plan for the future will be:
No more CT scans unless I present new symptoms (night sweats, bowel issues, lumps, etc) or my LDH blood marker rockets up above normal levels again.

I will conference with the doctor or his PA every two months, probably for a couple of years.

I will have to get my blood drawn, like normal people (needle stick), once my port is removed. Again every two months.

If I am in remission, this is the final stages of the treatment and monitoring, but I suspect one is never called cured, but in remission.

I feel great, except for the numb feet and occasional muscle cramps, not much worse for wear.

I will continue to receive my vaccinations until I am declared “caught up” and my little vaccination log book is covered in ink.

I am so thankful for all the prayers, support and well wishes. It has make this journey a much easier path to walk. And given the unusual post stem cell transplant activity (My doctor was sure I still had active cancer) heavenly father may well have stepped in to end the disease.

I wish you all an appreciation of life and the beauty in it.

Beauty is everywhere and an effort to look for is will be worth the effort.

I will continue to post after each check up and vaccination as others that may read this getting similar treatments can hopefully find it useful for their own planning and expectations.

Year 2, Day 224 (12/30/16)

Good Day!

Started off with a trip to Portland before dawn.

Except for hitting a big patch of ice and minor fog was a good drive. Fun to see snow on the roadside this time of year.

Arrived early, declared my vitamins as my only medication and they took me back and did the usual weigh-in, blood pressure and temperature.

The “Infectious Disease” doctor arrived, asked about any allergies or reactions to injections. When she was satisfied I was not at risk she explained the plan.

There are dead virus and weakened live virus vaccines. I would not be able to get the live ones until 2 years had passed from my stem cell transplant.

It was like I won the lottery! As there was a whole lot of them that were dead and I qualified to get them injected into my deltoids (muscles at the top of your arms on each side.)

The list goes as follows:
1. TDAP – Composed of Tetanus, Diphtheria and Pertussis (Whooping cough)
2. Polio – injectable version (no sugar cubes for me =( )
3. PCV13 – bacteria (contains 13 flavors in one shot)
4. Influenza (Flu 4 different versions) – not the normal one the quadravalent version.
5. HIB – Pneumonia.
6. Hepatitis B.

I planned ahead and wore a short sleeved shirt.

The nurse informed me he had never given 6 vaccinations to one per person on a single visit, but that he was told he gave good shots.

He decided to do 3 shots to each arm and the since the DAP was the one most likely to cause a sore arm, he put that in the arm I used the least at work.

He used a Z something technique, they pull the skin sideways then stick and inject, that way when they release the skin, the injected liquid can not seep back though a straight hole caused by the needle.

They had me hang out for 20 minutes to make sure I had no reaction and asked that if my airway became constricted over the next few hours to go to the hospital.

I returned home after scoring a bagel dog and an apple fritter.

They are arranging to have my future vaccines delivered to Seaside so I don’t have to keep running to Portland for the follow up shots.

Hope everyone has a great New Years weekend and 2017 treats you even better than 2016!

Year 2, Day 192 (11/28/16)

Great Week!

Spent Thanksgiving with my some of my family.

Yesterday was a 13 hr drive home. Resting today. Work tomorrow.

Visited my oncologist today.

Basically he won’t declare remission, because there is still a small amount of glow implying possible cancer in my PET scan.

But he is feeling very good about the results.

Long term plan is another CT scan in 2 months. If it shows no lymph node enlargements, they will remove my port and possibly do no more scans unless symptoms present.

So I am very possibly in remission and we will watch closely for the next scan.

Again, a big thank you for all your support and prayers.

I am starting to think ahead to other things and my life is starting to move more to a more pre cancer mode. My thoughts are more to the future.

Hope you all had a great Thanksgiving and enjoy the up coming Christmas Season. =)

Year 2, Day 185 (11/21/16)

Great Day.

No changes, symptoms or side effects since my last post on this illness.

Last Friday I got my CT scan to check the progress of my lymphoma.

I did not expect to hear any results til I speak with my Dr. next Monday on November 28th at our scheduled appointment.

But he was apparently doing rounds this weekend, for last night I received an update to my online MyChart.

The following is the comment he used to preface the posted CT report.

“Hi Bryant,

Hope you’re having a good weekend. Your CT scan and labs all look great.

I’m beginning to doubt even more that there is any lymphoma remaining.

Talk to you soon.

Take Care,

Nick” (my doctors first name is Nicholas.)

It would seem that things are looking better and that I MAY be in remission.

These last 2 scans were very unexpected by my doctor. As the one previous to these indicated my cancer was still active and no treatments occurred after that scan..

I am a believer in prayer and thank you all for your support and prayers during this journey.

I won’t post again until after I meet with the doctor next week, as there have been no new symptoms or side effects to report. Probably because I no longer take any medication at this point in the process.

I wish you all a great Thanksgiving and hope you find happiness in your family gatherings. (And of course a food coma after the turkey meal!)

Year 2, Day 123 (9/20/16)

Good Day.

Began with a beautiful drive to Portland on my favorite highway.

Then wandered down and did my hour nap after getting my radioactive injection.

Then did another 35 minute nap as I moved through the PET scanner.

Had a nice lunch.

Was relaxing, I was expecting to get the news that the cancer was growing and schedule up for a surgery.

BUT, my doctor breezed in, asked how I had been.

Gave him the short version of my urethra dilation and how that was no longer going to be an issue with any future chemo.

He said well that is good news.

He said your PET scan was good news as well.

He said the glowing had reduced from July which he did not expect, and the lymph nodes both have shrunk. And my blood test did not show any cancer marker for large B cell lymphoma.

So I may have some other chronic inflammatory thing going on, I may have a slow growth cancer (like maybe falicular cancer) that could have been the precursor or something else.

Bottom line, I will only need a CT (no PET) scan in November, which I can do at Seaside without losing a whole day of work. And a blood test at that time.

So, I am NOT officially in remission, but I may be cancer free.

As long as the lymph node don’t enlarge we will continue to watch.

If they do enlarge, they will then be identifiable and CT only and probably be able to do a needle biopsy instead of surgery.

So good news, for he next 2 month I will have a normal life, possibly the rest of my life…. heh heh heh yeah right. Cancer free anyway.

So I shall not be posting again till November, unless something cancer related happens before then.

As for the urethra dilation of last Friday, I slept the night without any bathroom trips (can’t remember the last time that has happened). Additionally the measured quantity of output in the morning was double the amount I have ever measured since the problems started this last spring and I started measuring output.

This means my bladder had only been emptying half way (hence the lifetime of UTI’s), now it seems my bladder is emptying completely. So a nice bonus to go along with the possible remission diagnosis of today.

My sister took us out for a nice dinner in celebration. Very full.

So I thank you all for all the prayers and good thoughts. I am pretty much at peace with the outcome however it goes.

I have a plan of doing more service in my community firming up. Hope to have it in place my months end.

Hope you all are having a great week.

Enjoy the wonders of this old world, they are everywhere, ya just need to take some time to enjoy them.

I wish all the best for you all and may god bless you all with peace and true happiness!

Year 2, Day 120 (9/17/16)

Interesting Week.

Interesting week.

Friday I had my office visit with my urological surgeon.

After a discussing of my urinary history, frequent UTI’s (urinary tract infections),frequent bathroom trips as night, etc. and that I may soon have to go back into some type of chemo program after my PET scan next Tuesday, he proposed we “dilate” the stricture in my urinary tract.

Dilation has a 50-50 chance (I’m not happy with the results of playing the odd’s with medical stuff these days) of permanently fixing my problem. Does not require surgery or the long recovery time that goes with it.

So I say “when can we do this?” He smiles and says, today.

I find my grasp of the English language slipping away with my older age, as he told me there would be a “minor amount of pain” involved. My understanding of what minor pain meant and what I experience was a complete disconnect. I have no desire to experience minor pain again!

He injected a numbing agent into my urinary tract. Then proceeded to try to get a balloon through the urinary stricture.

It was a no go.

But we was not deterred, then he inserted the camera back into my urinary tract and proceeded to feed a wire through the narrowing, then successively pushed larger and larger sheathes over the wire through the narrowing to widen it further.

The numbing agent was long worn off by this time.

Then he reinserted the balloon device next to the camera device (yes side by side through the urinary tract) and finally got the balloon through the narrowing.

At one point there was the doctor and 2 assistants tugging, twisting and pushing things around to get them to feed properly and get them through the stricture.

All the while saying things like, take deep breaths, relax, lay back, stop clinching up. Kinda reminded me of the stuff they told us when I attended the birthing classes with Janet so many years ago.

THEN he filled the balloon with water, which was quite painful and intended to cause “micro tears” in the scar tissue. Let me tell you, it did indeed do that.

Then he left the room for 10 minutes or so to let the procedure work. The pain actually reduced a lot before he returned. I guess it finished “micro tearing” the scar tissue.

He then examined the inside of my bladder and noticed small hernia’s, which are common for a bladder that has to work hard to pass like through a stricture.

Bottom line, no surgery and instead of taking a few minutes to empty my bladder in now takes between 10 and 15 seconds.

So my “office visit” turned into a “procedure”.

Instead of trying to wrangle a surgery with recovery around my upcoming oncology schedule. I am repaired/done with my urinary worries.

As we were leaving, my wife indicated she had never been so happy to be a woman after observing the 90 minutes of procedure she had just witnessed.

I am now free and clear to do another round of chemo if it is required without concern of again occluding my urinary tract.

He told me that my bladder has been trained to squeeze very hard. Basically for a while I will be able to knock empty pop cans off a wall at 10 ft. But in time my bladder will retrain and things will become more normal.

There is expected to be a tiny amount of pain for a few days, but that sure beats running around with two catheters for a few weeks!

So this coming Tuesday I will get my PET scan, if it is negative I will be in remission! If it is positive we look at more options.

Anyway, was a nice rainy day here at the coast. A good one to rest and look out the window guilt free from yard work.

Hope everyone is enjoying their Autumn season, had a great summer and has a great week coming up!

Year 2, Day 114 (9/11/16)

Good Week.

Feel and look normal (or so I am told.)

PET is a week from Tuesday.

This Friday is meeting with the urologist surgeon.

Then yesterday getting my new used car checked over, nice little car.

Then my cousin and his wife dropped by for a visit and we talked into the night, it was very enjoyable. Cousins are awesome and this one I hadn’t spent much time with for a long time. Great time and and great visit.

I ponder about the root of most problems and am working on a basic plan to keep my life on track. I am finding physical issues (money and health) not as alarming as they used to be, more like noise or annoyances.

I find I have an affinity for calm running streams and creeks. Probably from growing up in Myrtle Creek.

Hope everyone had a great weekend. It was sure a pretty one here!

Year 2, Day 106 (9/03/16)

Good Week.

Finally have an appointment with urologist surgeon next Friday. Will see if surgery is in my near future and if there is time to do it before my next PET scan.

Button on oven quit working. So can only run the oven at 350 degrees. The oven has a few other problems so time to replace it.

Unfortunately A free standing range is a half inch too big to fit into the hole where the slide in range went. And the slide in has a board across the bottom that stops me from taking it out unless I figure out how to remove the board. Fun times.

Also it may cost a thousand bucks to move the service to the other side of the kitchen where Janet really wants the range to be located.

Have a call to the electrician, he will tell us what that would cost.

Am checking out a $500 car as backup for our current one. And we can use it when we both need a car now. Its over 25 years old and got just over 150,000 miles on it, but runs well.

If it lasts a year or more I will be very happy.

Looks like we may try to make a run to Silver Falls this weekend I hear it is beautiful, lived here all my life, enjoy seeing the wonderful things here in our back yard.

So far all is going well.

Hope everyone is having a great holiday. Sure is nice weather!

Year 2, Day 99 (8/27/16)

Good Week.

Insurance won’t cover the “out of network” surgeon my urologist recommended.

So after some wrangling another surgeon was recommended, now I am awaiting a phone call ot see if we can get it done before my PET scan in October.

Been reading some talks from people in my church. Gleaned a few interesting quotes.

First quote: when you drink from the bitter cup, don’t let it make you bitter.

Second quote: don’t shrink from the bitter cup.

Third quote: people come up to me because I have Cancer and say how brave I am, but I tell them I have never been through a divorce, have a child die, lose everything and not know where my next meal was coming from, been persecuted my whole life or lived a life without love.

I have met many people that have drunk from a much more bitter cup than I have been given to date. Just hoping that doesn’t mean “you ain’t seen nuthin’ yet”.

The Hood to Coast run is today, makes Seaside population swell 5 to 6 times normal. Almost impossible to drive anywhere this weekend. Locals usually get out of town for the weekend or hibernate.

We are peacefully hibernating!

Hope everyone is having a great weekend and enjoying the last of summer. =)