Deep breath…

April 16, 2013 in Lymphoma by adminrcr

Going in to surgery

Loopy Jeff going to surgery

Jeff had a really good night’s sleep. He was up roaming the halls when I got to the hospital this morning. On the agenda today was a bone marrow biopsy and the port-a-cath placement. Dr. Oommen says he has Diffuse Large B-Cell Lymphoma (DLBCL), but there are subtypes. Further examination is being done of the biopsy material from last Friday to determine the subtype which will further direct his chemotherapy.

Interestingly, they did the bone marrow biopsy in his room. Jeff lay on his side facing me, while the doctor poked and pushed on the back side of his right hip. This is a very painful procedure – for the patient and for the poor sap holding the patient’s hand. Yes, there was pre-medication to help him relax, and local anesthesia, but it doesn’t get to the bone itself. Jeff could swear the doctor had his feet braced on the wall in order to push/drill into his bone. There were a few times Jeff’s eyes widened like he was about to explode, but he was a trooper. (Deeeep breaths) A wise doctor (Dr. Burk) advised that IF it needs to be done again we should give the pre-meds a good chance to take effect before the doctor starts the procedure. Noted! Those meds made Jeff sleep for quite a while after the procedure was done.

Flowers from Sondra

Flowers from Sondra

Next on the agenda was the port-a-cath. Jeff was still pretty loopy from the pre-meds when they came to get him for the surgery. They have a pretty neat surgery organization. I was given Jeff’s surgical case number and shown the monitors in the surgery waiting room. They list each surgical case (by number) – kind of like flights at the airport or the Dominos pizza tracker. The surgery tracker tells you the stage of the case, like “in pre-op”, “case started”, “closing”, etc. At one point I was waiting for Jeff’s case number to cycle to the screen when Dr. Birbari popped up beside me to tell me he was done. All went smoothly and he has a new accessory.

Power port - nothing low-tech for this guy!

Power port – nothing low-tech for this guy!

Jeff was THIRSTY and hungry so he got fed and chatted with visitors. On talking with him on the phone tonight, he said Dr. Oommen is starting Rituxan tonight. This is the first of the chemotherapy “cocktail”. He said we should know the subtype by Friday and should know the bone marrow biopsy results by Thursday or Friday. The “real” chemotherapy will probably not start until all those results are back, and then another 7 days or so in the hospital 🙁

Visitors today: Kristi Fugate, Dzu Dao, Brenda Pender, Sondra Simpson, Dr. Watenpaugh, Dr. Suri, Dr. Burk, Dr. Gleason, Dr. McDonald

Run with it

April 15, 2013 in Lymphoma by adminrcr

Walking pin cushion

Walking pin cushion



The docs confirmed that it is lymphoma. The final results as to which type of lymphoma are not in yet. Regardless, we’re off and running – he got a CT scan of the chest and neck which is clear – no tumor there. The PET scan was declined by the hospital so we’ll have to get that done after he is discharged. Bone marrow biopsy will be done and chemotherapy port will be placed tomorrow. The first round of chemo will be done in the hospital, but MAYBE he’ll get to go home by the end of the week. (Fingers crossed.)

He pooped today! I told him he needs the t-shirt 🙂 At least that is not causing him discomfort now. His fever went up to 103.7 at one point. Dr. Oommen and others say fever is not uncommon with lymphoma and not to be too alarmed. He got another unit of blood today. His hemoglobin was 8.2 this morning but 7.8 later.

If only Jeff could get some sleep. I have a good feeling tonight will be the night he finally does.

Visitors today: Dr. Steven Davis, Dr. Tim Schroeder, Carla Peveto, Darren Trainer, June Pollard, Ayesha Ratliff, Dr. John Burk, Dr. Kuppinger

Still Waiting

April 14, 2013 in Lymphoma by adminrcr

Flowers from Jeanine Rougier - most aromatic flowers I have ever smelled! Unfortunately, I didn't get a pic of them when they were fresh but they're still fragrant.

Flowers from Jeanine Rougier – most aromatic flowers I have ever smelled! Unfortunately, I didn’t get a pic of them when they were fresh but they’re still fragrant.

Another rough night, but Jeff got a couple hours of sleep. He’s still having lots of back pain, little belly pain. Hemoglobin is up to 7.5; getting another unit of blood today.

Denise came by to visit and brought goodies. She gave Jeff a much-needed hair cut. He wants to be presentable for his big news tomorrow.

He is afraid to eat until his bowels move and the pain meds are just helping to stall things. Dr. Aitelli ordered some longer acting pain meds – oxy-contin, and “liquid dynamite”.

We were encouraged by Dr. Cheryl McDonald who said that if the preliminary pathology result shows lymphoma, that is what we are dealing with. It won’t be a question of whether it is sarcoma or lymphoma, because the cells are so different. We are just waiting to see what kind of lymphoma it is and then put a plan in place. He will probably get a port for chemotherapy soon. I’m guessing a PET scan is also in the future. Again, answers will come tomorrow.

Visitors today: Denise Boyd, Dr. Luat Nguyen and Jeanine Rougier, James Cobb, Dr. Cunningham, Dr. Cheryl McDonald, Dr. Suri, Dr. Watenpaugh, Dr. Seiden, Dr. Stuart McDonald

Day 2

April 13, 2013 in Lymphoma by adminrcr

Flowers from Mom

Flowers and chocolates from Mom

Jeff had a rough night last night. His pain is not easily managed.

His hemoglobin was down to 6.9 this morning. Previous level was 7.9. Dr. Gleason says this could be due to the IV fluids he is getting, but he is getting one unit of blood.

Jeff is at least keeping food down, so the diet is out the window. He’s eating all the junk he wants right now since he will “lose lots of weight with chemo”. We’ve all told him this is a rather drastic diet he has chosen.

He’s pretty worn out, just not sleeping and getting little pain relief. He is still in good spirits, up walking around and chatty as ever.

I’m hanging in there. I don’t wait well. I’d like a plan.

Visitors today: Carlos San Martin, Carla and Haley Peveto, Dr. Don Watenpaugh, Shannon Watenpaugh, Dr. Connelly, Ginny Gromacki, Gary and Lisa Burdick, Dr. Stuart McDonald, Dr. Suri


April 13, 2013 in Lymphoma by adminrcr

This started a few weeks ago. Jeff was doing well swimming laps, getting fit. Then he had little energy, generally not feeling well, some upset stomach. He walked into the lab area at the office and Shelly said he looked anemic. He was sent for lab work and Dr. Suri took some history and did a brief exam. When his hemoglobin came back at 8.6, Dr. Suri got him in to see Dr. Sadiq. Dr. Sadiq did an EGD and colonoscopy the next day, 3/29/13. He found some bleeding ulcers in the duodenum, which were cauterized, and a couple diverticula in the colon. He was sent home and told to take Protonix and iron supplements. Saturday and Sunday following the procedure he felt some better, but by Monday he wanted pain medication. When Dr. Sadiq’s office said he shouldn’t be having pain, now three days from the procedure, we figured something else was going on. He continued taking the Protonix and iron and by Wednesday afternoon he was starting to feel better, but then not so good on Thursday and Friday. He changed what he was eating and stopped the iron and that seemed to help by Saturday. Sunday again was not a good day and Monday, 4/8/13 he did not look much better. On Tuesday he had repeat lab work, this time showing a hemoglobin of 8.1, so we saw Dr. Sadiq again. He recommended iron infusions and a CT scan of the abdomen. He had the first iron infusion Wednesday and a second Thursday; had the CT scan on Friday, 4/12/13.

During the CT scan, the tech stopped the procedure and asked Jeff for more history. She said “I know you’re in pain and we’ll get this done quickly.” She said she needed to call the radiologist, who then said they needed to call Dr. Sadiq and we were advised not to leave. They gave us a copy of the CT on a disk and, being the impatient people we are, we took the disk to one of our nearby offices and asked one of the doctors to look at it. Dr. Gleason said Jeff would be admitted. Period.

Flowers from TPCCC family

Flowers from TPCCC family

So he was admitted and a surgeon (Dr. Birbari), gastroenterologist (Dr. Sadiq, already on the case) and oncologist (Dr. Oommen) were consulted. We were told the possibilities, none of them really good, but lymphoma being the better of the options. Jeff was sent for a CT-guided biopsy so we can find out for sure what we’re dealing with. The pathologist took a look at the specimen, to make sure the sample was adequate, and gave a preliminary opinion of lymphoma. Dr. Oommen says lymphoma is treatable at any stage, usually with chemotherapy. He did say the location is tricky, though. Need to make sure it doesn’t start bleeding. Now we wait until Monday to get the final results.

In the meantime, Jeff is staying in the hospital so his pain can be managed, they can get regular lab work, give him blood and fluids, and generally poke and annoy him 🙂

Visitors today: Ginny Gromacki, Denise Boyd, Dr. Sadiq, Dr. Gleason, Dr. Oommen

This blog does not do the story justice. You really need to hear Jeff tell it… with all his flair.