Author: usewhatexists

Got the word that Wednesday Rich has his port installed. To us it’s just so reminiscent of a Borg cybernetic implant. And how odd think of a medical procedure as an installation! The port is a device that’s put under his skin, generally just lower than the collarbone. What you can see when it’s all healed is just a flattish disc shaped bump below the skin which is the portal… that’s where needles can be inserted to draw blood for tests or to administer meds and chemo. From this port, a connected catheter is inserted into a vein, usually the jugular. All of this allows the chemo to spread quickly and efficiently with less discomfort. There is less likelihood of problems with the veins as you would have with a regular IV and it leaves Rich with his hands free during infusions which can last up to 6 hours.

This makes eating, reading, playing Scrabble and holding hands so much easier! Expecting some transitional discomfort but ultimately it should be assimilated like any good Borg prosthetic. Rich can then be referred to, in true Borg fashion as One of Nine.

But first, we’ve got other business to take care of… Tuesday we head over the Nuclear Medicine division of the Monter Cancer Center so they can examine Rich’s generous heart with the MUGA scan. The powers that be want to ensure that it can stand the rigors of chemo. Once again, we entrust Rich’s health to folks who are just so hell-bent on filling him with radioactive goop. This time the infused radiated voodoo will travel through his blood so we get to watch his heart beat on a small screen while they examine the valves and the strength of the pulses. Bring on the biohazard boxes… we’re ready!

What an amazing resource the internet forums are for finding info on what’s worked for others who have gone through this before us! Acupuncture was one such nugget of wisdom that worked. And, as we’ve read and can confirm, Rich finds that sleeping in the recliner affords him less overnight discomfort and so a better sleep. Now the boys’ old bedroom has a recliner for him a daybed for her so we’ve been having what feels like sleepover parties… Complete with snacks and movies.

Again, and as always, we thank you for all your messages of love, faith and caring. They lift us up and do indeed give us strength. We have no idea how to reply to any of the private messages, but we’ve read and appreciated all your words of encouragement. We’ve tried our hand at a few pity parties, and other than the delicious ice cream festivals they become, we… well, truth be told… we really kind of suck at it.

Instead we’ve just taken a time or two to process our new reality. That was the main task on Friday as well as getting a few things checked off of our lists; EKG and blood work done and done and passed with flying colors… MUGA scan set up for Tuesday… prescriptions and supplements gotten as the doctor directs. Wish we had a few more items on our prep list scheduled, but hopefully we’ll get those calls on Monday. Sometimes the bureaucratic and insurance wheels turn slowly.

 

The end of the work week means that there are no appointment calls to make, no forms to fill out. This weekend is a time to get back to our life and with Easter coming next week, it can mean only one thing in our house… the smell of baking Tsoureki. Rich has been busy with his holiday tradition of baking loaf upon loaf of this Greek bread. There is something comforting about participating in the continuity of traditions that have gone on for centuries, and never more so than when life seems otherwise interrupted. Rich may be exhausted by the end of today, but it’s a productive exhaustion and that… that makes all the difference. Now we just need to refrain from the temptation of eating it all before next week! Kyrie Eleison!

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.

Only 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

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!

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 to celebrate those wonderful milestones in life. It’s definitely time to Eat, Drink and be Married!

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.

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 look forward to.

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.

Or “Seek and ye shall find” Within minutes, our scouting family inundated us with names of acupuncturists and we’re so happy to say that the results were everything we could have wished for. Went to the local guy in town and within 30 minutes, Rich’s pain and bloating were gone. What a relief to see that scowl of discomfort a thing of the past! We’ll continue to go three times a week to keep it all at bay and to work on the other symptoms that are more nuisance than anything else. So many many thanks to all of you from our little community within the “Eye of the Hurricane” who were so quick to respond! Our friendships are priceless. . . . So it took a day and a half for the pain to come back but Rich only needed half the pain med strength as before. Another session with the acupuncturist and the pain is once more gone. The effects should last longer with each session. Impressed with the changes this modality has brought. . . Tomorrow we meet with the next specialist for the next step. Hope we can move forward quickly!