What did he say???

It’s sort of hard to process all the info that an oncologist can throw at you. You try writing it all down as fast as you can and hope that your notes make sense. Luckily, these are very patient doctors and do take the time to make sure you don’t leave with questions unanswered. As we figured, the biopsy and the PET scan show lymph node involvement and lymphoma in the stomach mass. The question that’s still up in the air is whether the small cell lymphoma has transformed into the current diffuse large B cell lymphoma or is this a new cancer. To us it doesn’t really matter. The big question is always, what’s next?

Well, we’ve got a whole lotta what’s nexts. There are a few more diagnostic tests to undergo… a bone marrow biopsy, EKG, blood work, muga scan to check that Rich’s heart is up to the chemo task. They’re going to install a port this time around to make treatment and blood work easier on Rich.

That’s all the prep work. Then Rich will begin R-CHOP – the same chemo he had before. (rituximab,cyclophosphamide,doxorubicin, Oncovin, prednisone)

This time it will either be administered over a few days with a hospital stay or over period of time in three or four sessions. the remaining two cycles of chemo will be using R-I-C-E (rituximab, ifosfamide, carboplatin and etoposide. The reason for the two different types is so that we don’t max out on some of the drugs’ lifetime amounts and to give a more broad- spectrum plan of attack. There’s some more consults to have in regards to the final course of action, but so far, this is the basic plan.

This is all in preparation for autologous stem cell transplant. This is where they will extract Rich’s own bone marrow cells from his blood, treat it to remove the cancer and maybe boost ‘em up with some growth hormone and reintroduce it to his body so that it can generate healthy cells. At that point, he can be in the hospital for up to a month while the new cells replicate and his immune system gets back up and running.

After the successful stem cell transplant (because really, we’ve decided to refuse anything but success, thank you very much) then he’ll return to a sanitized home to continue to build his immune system and regain his strength.

We’re thankful that we have a team of specialists who are tops in their fields and who we trust implicitly.

We’re thankful the doctors are taking all our wonderful celebrations into account and working with us on the scheduling for Nicks’ graduation and Richard & Noelle’s wedding.

We’re thankful that the acupuncture continues to afford relief.

We’re thankful that surgery is not indicated so Rich gets to keep his favorite stomach.

We’re thankful that you’re all with us on this journey and we know you’ll be there for us as you have been in the past.

And yes, we’ll take all offers of help because we know we can’t do this alone.

So now it’s time to get out the travel Scrabble game… ‘cuz during times of high medication is the only time Rich loses at Scrabble.$_58

Does he glow in the dark?

35886_20140415_101135_displayOnly time will tell! PET scan today…. this will tell us if the cancer is elsewhere in Rich’s body and help the oncologist determine the plan of action. Meeting with him on Thursday to go over these results and the results of last week’s biopsy.

Rich had to refrain for eating carbs from 1pm yesterday until the end of the test. Cancer eats up more sugar than other tissues in the body and the isotope is in a sugar base. So they need a clean starting point. Interesting part of the test is when they take you into a lead lined room. Phones don’t work and there’s no wifi signal. Thankfully, there is a TV to keep you company. Then they come in with a little lead box with biohazard markings all over it. This holds the radioactive isotope that they inject into Rich’s port. There were about three vials of voodoo that they used. It takes a lot of trust to allow people to not only shoot biohazards into your arm, but then hand you a large berry drink that’s also got some voodoo in it.They tell you to drink it. And you do.

Then comes more waiting. It takes an hour for the goo to travel around your system. After the required amount of time, you get to leave the lead lined room and they take you to a bed for a ride through a mechanical donut. Half an hour later and you’re free to go finally eat a decent meal.

We’ll be picking up the CD of the slides, it will be interesting to see what they look like.

PET Scan Tomorrow

PET Scan tomorrow

April 7, 2014, 6:03 PM

So glad to have gotten a quick appointment for the ever-important PET Scan… going tomorrow 4/8/2014. This test tells us if Rich has cancer cells elsewhere other than the stomach and is an important tool for staging and deciding on treatment options. We’re meeting with the oncologist on Thursday 4/10/14 and he should have the results of the biopsy as well. Fingers crossed that we’ll get our plan of action and be able to move forward with treatments. We’ll keep you posted!

Making Progress

Touched base with Rich’s oncologist today and we’re meeting with him next Thursday. Presumably he’ll have the results of the biopsy by then. Also we pushed to move forward with any other testing we can get out of the way while we wait for the pathology reports. So glad we’ve been given the go ahead to schedule a PET scan. Should know when that will be on Monday. Starting to feel like we’re getting closer to where we need to be.

Those little pressure point seeds from the acupuncturist are working for some extra relief. It’s very short term, but every little bit is welcome.

Within a couple of hours, Richard and Noelle will be here, Nick coming tomorrow. Gearing up for a wonderful afternoon on Saturday with friends and family. It’s time to celebrate those wonderful milestones in life. It’s definitely time to Eat, Drink and be Married!

Grateful!

The second biopsy is now behind us and doctors all seem to agree on the lymphoma diagnosis. Pathology reports may be in in a week to confirm… fingers crossed. This biopsy mapped out the size, location and most importantly, the depth of the tumor using endoscopy and also ultrasound… so instead of a two dimensional image, they get 3D (without the glasses). That will enable the doctors to stage the cancer and plan the mode of attack because they will now know how deep the tumor has gone into the stomach lining. Rich did well even tho’ it all took twice as long as anticipated. He followed up with acupuncture later in the evening and they added “seeds” to his right ear. They are similar to the motion sickness patches in that they are located on the pressure points that affect the stomach. He’s supposed to rub them before and after a meal as well as whenever his stomach is bothering him.

We’ll let you know how this modality works!

So grateful to friends and family! Thanks to Pete for hefting our furniture delivery into the house Thanks to Peggy for a short but sweet visit Thanks to Maria and Danny for getting us to/from the second biopsy Thanks to Arlene for getting the slides to the doctor and Rich to acupuncture (and me around the track for some much needed exercise!) Thanks to LaValle for all the pictures of little Bean which brighten our days and make us smile Thanks to Amy for making me laugh out loud every night – The Dalai Lama would be proud Thanks to our kids for checking in regularly and sending their love Thanks to all of your for caring and stopping by! Can’t wait to see everyone on Saturday… truly a time to celebrate with the people we love for a wonderful event.

Biopsy Take Two

Next biopsy to get samples from the lymph nodes set for Wednesday… thanks to Maria for promising to get us there!

After this, it will take two weeks for the results (the waiting game continues) but this should give us the info we need to get the treatment options figured out.

Acupuncture is working for about 36 hours at a stretch to relieve the pain and bloating and enable Rich to go to only half the meds when the treatment wears off. Overall, a huge improvement. Gonna continue for three times a week. Ensure three times a day, iron supplements getting some good color back despite weight loss. Finding a good balance!

Looking forward to seeing Richard and Noelle this coming weekend and pictures of Bean and Boo make us smile every day. We’ll see them at Easter. All good things to looaccupuncturek forward to.

…and more waiting

Waiting to find out when the next biopsy will be scheduled

Waiting two more weeks after that for the results

Waiting to see what other tests we need to get

Waiting in waiting rooms

Waiting at home

Waiting on the phone

Waiting

Waiting

Waiting

<sigh>

So instead we’re looking forward to all the wonderful events to celebrate with our family and friends.