Monday, November 9: First maintenance

Mike had his first maintenance therapy today -- a very long session of Rituxin, the antibody/immunotherapy.  They give him Benadryl to prevent reactions, but that kicks of restless leg syndrome, really bad. He's a bit tired, but no heavy side effects should come up.
Doing it again in two months.
We had some fun this past weekend in Florence, a one night trip to see a cousin's daughter star in "Chicago." Bright, shining star!

Pic of pic

The darkest spots are the most "metobolically active."  The shoulders and neck are from arthritis.  Next down is the heart, then the right and left kidneys, and finally the bladder.
The cancer spot is between the heart and left kidney, a grayish mass, smaller than the heart.
There is a measure of the "uptake value," to assess how much of the tracer was picked up in each area. 20 would be a number for an aggressive cancer; Mike's was about 5.

October 26, 2015: Good news from PET scan.

The doctor is very encouraged by the PET scan results; so are we!  In short, there is one mass, and it is less than half the size from eight months ago.  The mass is also less dense -- thinner texture, if you will.  I took a picture of the picture, and I will work really hard to get it loaded here.  

Mike will never get rid of all the cancer.  But he will undergo a maintenance routine of immunotherapy once every two months (for two years) to keep the disease at bay.  This type of lymphoma is known to transform to be aggressive within ten years -- Mike would be 78 then -- and the immnotherapy should extend his timeframe even longer.

The doctor is still concerned about his general weakness and low iron, so she is referring him back to the gastroenterologist for possible tests.  

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In other Mike news, he saw the dentist today and will return Thursday for a filling.  They had a very long discussion about implant (Mike is scheduled for one next week) and/or removable bridge and//or permanent bridge.  Wish me luck in getting him to a decision soon.

AND in a couple of days he sees the dermatologist to have some Halloween carving on his ear.  
To be scheduled: follow-up with general practitioner; next neurologist check-in.

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Gratitude: The PET scan results, of course! 

New doctor is great

Mike and I were both impressed with the new oncologist. 

She spent a lot of time with us.  

She put missing information into his record (really, his medications weren't in there!).  
She told us what she was thinking, with pros and cons, AND asked what we were thinking.  
She told us what vaccinations Mike should get (flu) and not get (shingles). AND why.
She even explained why his kidney function is now normal instead of stage three kidney disease.
The enlarged lymph nodes can either be left as "wait and watch", or Mike can have the anti-body treatment to more actively work on keeping them from growing. She is going to order a PET scan. The scan will "light up" any areas where the cancer is active. We expect Mike will take the anti-body treatment once every two months; the scan might indicate if something more aggressive is called for.
His white blood cell counts are back to normal, and she believes this means the treatments have cleared the cancer from the bone marrow. But Mike still feels weak, so he will get a blood test on two specific items. The doc said any fatigue from the chemo should have passed by now.

Gratitude: This has been a beautiful summer.  Even September has been nice, with a couple of much needed rain days. We enjoyed the blood moon eclipse together. 

Wednesday, September 2: Wait and Watch

Doctor said, "Your enlarged lymph nodes have not decreased.  I just don't know what to think about that. You seemed to have had more response when we had you in the hospital for that week of really hard chemo."

I asked him to explain just where the nodes were, confirming that two near the trachea were gone. They are in the abdomen and pelvis.  "One is 15 millimeters, we'd much rather see centimeters. We'll just have to wait and see what happens." His blood counts were just a little low still, but much better than six months ago.

Then the doc switched to, "So, are you going to watch my sabbatical?"

Me: "You're having a sabbatical?

"My run for Governor."  A little political talk, mostly felt like he was practicing his stump speech.  Then back to Mike with, "I'll see you in about a month." As he was charging out the door I stopped him, "Hey, can he have the PICC remove?"
"Yes, sure, we will do that right here."

We went to scheduling, got an appointment (switching to a different doctor in the practice), and Mike got the PICC out.

Next week we will get to see the old farts -- I mean good old friends from Mike's professional days!

Wait and watch.  I prefer live and love.

Sunday, August 30: Cast off

No, "cast off" does not mean we're going sailing.  Come to think of it, right about a year ago we did head out on a cruise to Alaska!

Mike got his cast off several days ago, so he's a happy sailor-man.

Then he visited the dermatologist's office, with a couple of biopsies and then a lot of freezing of bad spots (normal for him).  Not so happy.

Now we're just waiting until Wednesday to see the oncologist.

August 4: latest CT scan

Mike's CT scan (July 30) showed two lumps near the trachea "resolved," meaning they are gone.  Lumps near the pancreas head and in the abdomen, however, are unchanged.  Yuck. Ptooie.

Chemo was today, another tomorrow, and Mike will see the doctor in a month.

Added to his "Accessories"

I'm very late in my reports, but not because anything bad has happened.  

First, why the headline?  Mike now sports a cast on his right wrist/arm.  He fell about six weeks ago, and gradually complained more and more about pain in his wrist.  An x-ray, we were told, was hard to distinguish between arthritis and fracture, but they were pretty sure there were two small fractures and a damaged ligament.  Since he uses a walker, the wrist needed to be stabilized for a chance to heal.  Mike has four more weeks with it.

But he manages to "find" (or create) humor in most situations.  Last week a fly was buzzing around Mike's head, landing on his forehead.  Mike smacked it.  With his right hand.  With the cast.  Yup, a little owie.

Before chemo two weeks ago, the doctor was going over what the initial symptoms had been before the cancer diagnosis.  He mumbled something about some inconsistent symptoms, and announced Mike would get another CT scan, coming up late this week.  I'm sure we won't get results until Mike's next appointment, middle of next week (August 5).  But I PROMISE to give a more timely report this time.  

Until then, be safe our friends!

Thur., June 25: Some smaller

Doctor's report on the scan: there has been shrinkage, but not as much as he espected.  Mike can have up to eight rounds of Treanda -- at the point of the scan, he'd had only three rounds.  Today finishes the fifth.  

The plan, then, is mid-July for number six, early August number seven, late August number eight, another scan probably before Labor Day.  

Tomorrow is Mike's birthday!

Yes is attitude is good.  He's very fortunate not to have side affects from chemo.  We have a caregiver who comes in overnight to help him as needed (five nights a week).

We might even try out the RV Friday to Sunday to get out of the valley heat...  vroom vroom

Tues., June 2: Scan results, yes and no

Yesterday's CT scan (with contrast) went well with, as always, a few hiccups.  At this morning's appointment with the physician's assistant, she had the scan results BUT the radiologist had not compared to the February scan.  She's sending it back to get the interpretation.  

Mike is sleeping through chemo right now.

The new caretaker last night was good last night, but Mike wasn't.  After being up in the living room chair a bit in the middle of the night, he headed back to bed and told Brandon, "I'm fine, you don't need to help me."  In a minute, Brandon heard him fall (large carpeted area, so Mike wasn't hurt).  My advice was, "Don't listen to him.  Tell him you're going to keep an eye on him until you know he's safe."

Sat., May 30, 2015:

Small changes over the last few weeks.

We had an overnight caregiver last week and this week, four nights each week.  She was temporary because we have a young man starting this next week.  Quite a process to get to the right point with all this, but Mike has been quite accepting of the need for me to get some sleep (although he still questions the cost once in a while!). 

Doctor P ordered a scan; round and round we went.  Mike is allergic to IVP contrast solution, but he's been told he can be pre-medicated for it.  Silverton Hospital asked where the allergy is documented (even the doctor's office scheduler got frustrated, "Do you mind if we try here at Salem Hospital?")  Salem said his reaction had been too severe to risk it, even with pre-med.  So switch to MRI -- insurance will have to approve, of course.  Got scheduled for Woodburn, pretty cool.  Well, maybe not. When we got there, check-in said there will have to be another appointment. There are two "studies," and they each take an hour. As they were lining Mike up to go in the tube, "Now put your arms up over your head," I knew we were sunk.  They started sliding him in, and he couldn't breathe. Tried the arms at the side.  He made it through several pictures, but by then had to pee.  And there was NO way he was going back in there.

What's happening on Monday?  Oh, just a CT with contrast and pre-medications. *sigh* At Salem Hospital.

Tuesday and Wednesday will be chemo.  

Happy news is we got a (used) field mower attachment for the tractor!  Thanks to our neighbor John who has been keeping a look out for one.

Gratitude: Mike was feeling well enough today to mow between the garden and berry rows, PLUS both the front and back yards.

Mon., May 11, 2015: fourth round of chemo

Mike still has his persistent cough, so he's really tired.  Doc told us today that last Thursday's CT doesn't show anything (like pleurisy or pneumonia), but because it's been three weeks, he prescribed an antibiotic.  I'm not so crazy about that, because we have so much unnecessary antibiotic use in this country.

Doc mentioned a lymph node near the chest is about 1', but I didn't ask how that compared to two months ago!  Or compared to whatever the normal size is for that node. Argh. 

During today's chemo, daughter Brooke came to sit for an hour, and I got a play date with the granddaughter!  Remember, now, I was told at the last chemo that either I or another caretaker needed to be with Mike, because they weren't staffed to help him to the bathroom.  Hah.  Brooke texted me later, "The nurse is taking him to pee, LOL."  Talk-to-text couldn't quite translate me screaming, "Seriously??"

We are getting closer to getting overnight care here at home. 
I called four possibilities yesterday. Our location was too far for one. One call went to, "Voice mail has not been set up..."  A third hasn't answered my message.  And the fourth we will interview this week, but  he is currently helping his grandmother in California and might not be available until at least three weeks (and maybe not until two months). Mike wanted a male, because of the physical lifting, but I think I will open it up for women.........

Second day of chemo tomorrow will be very short.

We expected Mike to be scheduled for a scan in two weeks, but the doctor said today that with the CT last week, and the chest x-ray the week before, he will wait until after six treatments for a full body scan.  Two weeks after the sixth treatment will put us at July 6/7. 

Friday, May 1: catchup on last treatment and checkups

Mike's last chemo treatments, April 20 and 21, went just fine.  But we were told I (or another caretaker) will need to stay with him because they are not staffed to help him with mobility issues.  In other words, if he needs help getting up to use the restroom, they won't do it.  Ptooey.

His biggest issue right now is a persistent, deep, horrible cough; it's going on 10 days now.  At yesterday's doctor's appointment, he ordered a chest x-ray and the result was 'no problem, no pneumonia or anything else.'  Ptooey.

A prescription for the cough was sent a week ago and not filled until two days ago.  Supply issues and non-communication.  In the end, the med didn't help.  Ptooey.

On the good (or 'non-Ptooey') side, we had lunch with a good friend yesterday.  And y'all know we've been having the best weather. Setting up the garden, having plowed five rows and added compost.  We had 10 yards of bark dust delivered to dress up the landscaping. Bought kiwi, so I need to finish the materials list and get the trellis built.

Daughter Brooke (with Kylea) came Monday to help with outdoor stuff.  We were working and talking in the little side yard, with Kylea making some announcement from out front, until Brooke listened and started laughing.  I looked up and realized it was, "Look out, make way, tree coming through!"  She was carrying a potted plant, an ocean spray, about as big as she is!  So three plants got put in the ground.  And on the back deck, after Grandpa got up and went inside, she slid right into his chair. "Kylea, do you want to go in the garden with Mommy, or on the tractor with Grandma?"  Her reply, "Nah, I'm just hanging out."


Next appointment will be in ten days for chemo.

Gratitude: Sleep.  We get it when we can.

Weds., April 15: no tax comments here!

Blood draw and meeting with the oncologist: Mike's numbers are about the same as last week.  Next Monday and Tuesday will be another round of chemo, then another three weeks will be the fourth round.  His doctor expects he will order a scan in late May to see how things look.

Hey, a couple of people have told me that they aren't able to leave a comment on this blog (Hi Mom, hi Amy).  It used to work, and I've checked all the settings, but I can't see anything wrong.  Feel free to call or send a text or email. 

Today's gratitude: really nice weather today, and for several days coming up!

Weds., April 8: Diagnosis update

First, today's funny.  Thanks to our friend, Lee Erickson, for this outlook when we explained Mike's head is completely buzzed now: "Just put a light bult in his mouth and call him Uncle Fester from the Addam's Family."  Mike giggled so hard he couldn't talk!

(Sorry I didn't post last night, but I was fighting with Turbo Tax.)

After our talk with Lee, Mike said he wanted to know more about the new diagnosis.  He was near the end of the first chemo in the hospital when the doc first explained it.  His question was a good one to ask the doc.

Bottom line, before I go into detail, this is all good news.

The diagnosis by OHSU came back as small B-cell in the bone marrow, and "intermediate" in the stomach biopsy.  Those are non-aggressive cancers, compared to the very aggressive large B-cell the first lab reported (and therefore, the "put you in the hospital right now" action taken by the oncologist).

The less aggressive sub-types are harder to get rid of, but need less harsh treatment and are easier to keep a lid on.  Mike might be put on occasional doses of Rituxan, the anti-body, for maintenance.  And it might be that the type advances into large B-cell in five or seven years.

The more immediate plan is to continue the two-drug regimen, probably every three to four weeks, through at least June or so.  After another two rounds, the oncologist will probably order a scan to see how things look.  But right now his blood counts have improved, and the doc is pleased, "You just look better."

This was our longest talk with the doctor to date.  Of course, it was extended by talking about the ninth round of boards he has taken in his career, and why he is looking at running for Governor.

Mike will have another blood draw in a week, and the doc will decide on the timing for chemo round three.

Today's gratitude: to Lee Erickson, not only for the bit of humor, but for pushing us to push the doctor on confirming the diagnosis.

Mon., March 30: first outpatient chemo

This is going to be a long day after all.

Even though the hospital gradually increased his drip (on Rituxan) to watch or side effects, the outpatient clinic will go through that slow process again -- luckily just this first time. Then about an hour on the other med (tomorrow is only the second med, hooray).

Rather boring.

Tues. March 24: Hair Irony

As I was going home from my hair appointment today, Mike called and exclaimed, "My hair is coming out in clumps! We have to cancel our friends visit tomorrow."

Honey, we knew the hair would go. And not that it matters, but the friends are coming the day after tomorrow. They don't care about your hair.

Mon. March 23: Mike is doing well

Bendamustine.  That is the chemo drug taking the place of the more toxic (and four days) combination. I will call it "Ben."  

Mike will have a half day of Rituxin next Monday. Then "Ben" will be about 90 minutes on Tuesday. Three weeks off, and do it again. 

Not to be misleading, however, because the effects can be as tough as any other chemo.  We still expect Mike to lose his hair over the next month. The treatment will tire him, and he can have a variety of gastric issues. And yes, it will kick this cancer's butt!

For nerds, why the change?  The first lab report said the stomach biopsy was type 3, large B-cell, aggressive; and the bone marrow sample type 1, small call, indolent or slow growing.  OHSU said type 2, intermediate, with type 1 in the marrow. Doc says, "We're going with intermediate. And the treatment has lower long term risks for him at his age.".   

Friday, March 20: yes, outpatient chemo

We will get more details from the doc Monday, but the medical assistant was able to tell us that Mike can have outpatient chemo instead of being in the hospital for a whole week every time. 

I'm a wee bit worried we could be traveling more.  Oh well, we will see.

Mike is doing very well.  He's had a little bit of mouth soreness, taken care of with some food changes and a baking soda + water swish.

March 16: First post-chemo appointments

Yes, today was hard on Mike, as he is in the "nadir," the low point of his blood counts (boo, expected).  But not so low he needs a blood transfusion again (hooray).

The doctor is still waiting for two reports. One is from OHSU (a chromosome report, I think).  I've forgotten the other.  Depending on the results, Mike might be able to do outpatient chemo instead of hospital inpatient!  R-CHOP instead of R-EPOK.  

Wednesday and Friday will also have quick blood draws and possible blood transfusions.  Otherwise, some good rest is on tap.

Today's gratitude: we have always been a good team.  We will continue to treat each other kindly. 

Thurs March 12: home

It feels so good to be back home, and the last eight days were -- were they real? We have three days to adjust, then a flurry of three appointments Monday.  Mike is likely to start feeling sapped of strength by then, unfortunately.  

I might not be posting for a bit, just because there won't be anything to report.

Today's gratitude: we really enjoyed today's great weather, with more on the way tomorrow.

Weds, March 11: home tomorrow

Two bags of red blood cells today.  When he discharges tomorrow, Mike will go to the oncology office for a shot to boost his white blood cells.  We were told it's cheaper that way than doing it in the hospital. 

By the end of the day, Mike was basically disconnected from stuff, except for the PICC which will stay in.

Mike did lots of walking today.  Visit from Brooke and Kylea.

Phone call from his cousin, whose answering machine contained Mike's message, "Well hi there.  Just wanted to let you know I have cancer.  Give me a call!"

Not much else to report.  We expect things to get uncomfortable within a week, and excuse me if I don't report the details.  What's that you say, thank you? Why, you're welcome.  

Yes, he will lose his hair.

Today's gratitude: blood donors.  I donated at the Salem Red Cross on Monday.  So if you are part of the 60% who can, please think about it.  

Finishing the last bag in the first round - Tues March 10

Mike just finished this round of chemo bags. Tomorrow he will receive some blood product to help boost his system before the drugs plunge all his numbers. Going home Thursday!

Next week he will need to check in at the doctor's office Monday, Wednesday, and Friday. About that time, his immune system will be at its lowest, so we have to be careful.  No trips to pre-schools!

The weirdest thing about this adventure is how much his kidney function has improved.  Yes, it will take a hit, but right now he is normal "Stage 1" instead of stage 3 (out of 6).

Gratitude of the day: family, friends, and neighbors.  Thank you all.

The treatment plan

First, updates. Bone marrow sample did NOT show his large cell cancer, aka, it has not matastized to the bone. And Mike has been walking during treatment, two walks daily, a big circle on "5 North."

The big picture on his treatment is five days (or so) inpatient chemo, three weeks off, five days in, three weeks out.  Expecting six cycles, but subject to change if tests show it should change, or he becomes intolerant of one of the drugs.

More specifically Mike gets R-EPOC:
One bag of Rituxan, dripping in over four hours
Four bags of Etoposide/Doxorubicin//Oncovin, each of which drip in over 24 hours (yup, almost 100 hours of drip-drip-drip)
One bag of Cytoxan -- we don't know yet how long it runs.

There are certain periods where Mike's blood counts will be low, when we will have to be extra careful to avoid possible exposure to germs. 

Mike's diagnosis

Never in my wildest dreams did I think my little blog would become a medical blog.  But here we go again.

Mike's medical history includes Parkinson's and congestive heart failure (CHF).  He occasionally has fluid build up around his lungs, making him take short breaths and feeling like he's not getting enough air (even though his oxygen level is not in danger).

The evening of January 23 he asked me to take him to the emergency room.  Tests showed he is suddenly very anemic. For example, one of the measures is hemoglobin, where the normal range is about 12 to 17.  He had been at 12 for a long time, including a blood test just three months prior.  Now he was 9. 

Jan 29: Follow up with our doctor, Mike referred to special testing (scopes, fun). 
Feb 10: specialist consultation.
Feb 20: colonoscopy, endoscopy (with biopsy of stomach)
Feb 24: biopsy result, lymphoma 
Feb 26: CT scan; and we got a report his hemoglobin is down to 8.
March 4: oncology doctor consult 

[A blip in this story: I had been summoned to report for federal jury duty March 2. Ask me some other time how it went.]

Mike's daughter Dianne joined us for the oncology consult. The doctor rattled off pretty much this statement, "So you are Michael Ramsby.  You have diffuse large B-cell gastric lymphoma.  The good thing about large B cells is that they respond very rapidly to treatment. I am going to admit you and start chemotherapy tomorrow.  We still need to does some diagnostics, including echocardiogram and bone marrow aspiration, but we are going to start hydrating you in preparation for treatment. I have a girl looking for a room right now.  Any questions?"

Mik asked, "So I will be admitted tomorrow?"

No, honey, now.

The doctor left the room, and we were very quiet.  I felt like a dump truck had just come in. Dianne said she felt like she had been in a drive-by shooting.