If you’ve got a spare five minutes, I highly recommend it!

After waking up I had the pleasure of finding that all attempts to get out of bed were met with intense pain. Pain that motivated me to stay in bed and not move a muscle. Except for the muscles used in taking two Percocet, and calling the oncology nurse (Sharon) that works with Dr Norman.

I described the pain (shoulder pain, likely because of spleen interacting with diaphragm) and she paged Dr Norman to ask his advice. She called us back with the request that we head to Urgent Care, where she’d ordered some pain medication and a CAT scan.

We also called our friend Lauren (an EMT) for backup.

I got into the car verrry slowly and Jana drove Lauren and I to the hospital post-haste.

We checked-in at Urgent Care and were admitted right away, skipping triage and much waiting. Vitals were recorded, a bit of blood was drawn, and then we got started on medication.

First was the awesomely-named anti-nausea drug Ondansetron, which would be a great name for a disco robot.

Then they got to the actual pain medication: Dilaudid. It’s just about as close as you can get to pure opium. I didn’t notice tremendous effect, but my dosage amount was pretty low.

Then: a surprise visit from Dr Norman! He stepped in to give us a briefing on the next steps. He didn’t have the full pathology report on the lymph node yet, but he was hearing unofficially that there appear to be colonies of more than one type of lymphoma. His suspicion is that I could have LPL that has spun off an instance of DLBCL along the way.

That’s right… I may have double cancer. Trump card for sympathy! Twice the bounty when I beat them both!

The chemotherapy would be intended to attack and destroy both cancers during the series.

We launch our attack tomorrow at 10am.

After some time to let the medication kick in, they took me downstairs for another CAT scan. We wanted to ensure that this pain wasn’t due to some sort of rupture or bleeding. Sure enough, my spleen is totally intact.

As the level of pain itself was not reduced, and judging from the serious effort it took to get out of bed this morning, the doctor in Urgent Care recommended that I stay in bed overnight in an observation room. A scant hour later we were on our way to the room.

And so here I sit, just about ready to fall asleep. Tomorrow will be a big day: the beginning of a long series of chemotherapy. I feel anxious about having my body burned from the inside, and dealing with sickness and reactions I’ve never known. But I’m ready to start removing uncertainty, to continue trusting in the support of friends, and to give these cancer cells a much-needed “etiquette lesson.”

The message was that the initial pathology from the lymph node biopsy confirmed the bone marrow biopsy of lymphoma. They’ve sent my node (or slides from the node, or at least some part of it) to UW to have some additional stains and markers done on it for subtyping.

He invited me to schedule a phone visit for after the results are in, so I’ll do that in addition to following up with my oncologist. I really like that Dr Kent is still interested in my case, even though all the cutting is done. Additional interested experts = a happy Tom.

We had a lot of questions that would be difficult for the doctor to answer. Questions that make people who’ve already been through this ideal resources.

We picked up some food on our way; each meeting starts with a potluck. We put on name tags and started getting to know people.

Soon everybody moved to a room next door with their plates and we sat around a large table to begin introductions. Each person introduced themselves in a different way, but most included some part of their “Cancer ID” — if they had lymphoma, if they were a caregiver for someone with lymphoma, what kind of lymphoma, how they were doing.

After introductions, we started letting our questions flow. We got answers to our questions, answers to questions we didn’t know to ask, and advice from people who’d been through it.

Some tidbits:

• Stay positive, do the things you love, be surrounded by positive people. These are the things that will keep you from wallowing in despair or self-pity.
• R-CHOP did not keep most people from being able to work. Stay positive, stay motivated.
• Don’t put all of the obligation of moving things forward on your doctor. Be active and persistent in getting scans scheduled, educating yourself on your situation and possible courses of therapy, and being able to effectively discuss diagnosis and treatment. Through this you can help channel the doctor’s attention, energy, and expertise where it is best applied: on evaluating and treating the lymphoma.
• Be proactive in discussing health with family and friends. Many people will be unsure about what kinds of communication are OK and not OK with you, and this can create stress in friendships or family relationships. Make your willingness (or non-willingness) clear. Additionally, when you need help, make sure people know!
• There are cancer retreats at Harmony Hill on Hood Canal that are free for cancer patients and survivors. Awesome.
• We received some glowing recommendations of some lymphoma specialists to see at SCCA.
• Chemotherapy nurses have good advice about treatments, side effects, and how to mitigate them. Use their experience and expertise!
• Prednisone (part of CHOP) can be an emotional roller-coaster. And if you stop it suddenly without stepping down in doses, you’ll hit a brick wall and have no energy at all for the next few days.

It helped tremendously to talk to others who had done this before, and to hear about what they (and their spouses) endured to get through it. It was very encouraging, and I recommend it to anyone newly diagnosed with lymphoma.

On Sunday things changed.

I developed a pain in the left side of my abdomen when I took deep breaths, leaned in certain directions, or did anything that flexed my abs. In fact, anything that pushed my stomach forward caused pain; this included laying down to go to bed.

I spent the next few nights sleeping sitting up. Not so comfortable.

On the advice of Lauren, a friend who also happens to be an EMT, we decided to take me to the ER at Northwest Hospital to expedite the CAT scan. If there was something that needed immediate fixing, we’d really like to know!

After some more blood tests and a CAT scan we were told that there was not an immediate need to operate. However, the diagnosis noted three things:

1. Massive Splenomegaly (24cm, when 10cm is normal)
2. Intra-Abdominal Lymphadenopathy (abnormal lymph nodes in abdomen)
3. Suspicion of Lymphoma

That third one was a big shock. After the Urgent Care visit I’d been pretty convinced that the iron deficiency was making me anemic, and the anemia was making my spleen start to overfunction.

As soon as I got home I called to move that Hematologist/Oncologist appointment up to Monday.