Home again

September 21, 2013 in Lymphoma by Reta Reed

What a week. Not. Fun. At. All. Well…we had one really nice half day at the beach, but the rest pretty much sucked. Things are moving along, but there’s still a lot of waiting. Waiting on a doctor, waiting on a nurse or phone call, waiting on a shuttle, coordinating and consolidating appointments. Their system is just really different than the VIP treatment we get here at home 🙂

Jeff wasn’t feeling too great on Monday; had some pain in his belly. Dr. Hagemeister threatened to put him in the hospital if his pain was just a little higher on the frowny-face scale. Dr. Hagemeister is interesting. It took a while for him to loosen up with us. Anyone who knows Jeff, knows his sense of humor and sarcasm. Jeff likes to lighten the mood whenever possible and, at first, it seemed Dr. Hagemeister was just not with it. But, after he got his speech over about the available trials and how they can’t put the CT and PET scans in their system, blah, blah, he loosened up and was more human. Jeff signed lots of stuff – consent to participate in the trial, consent to let them use blood, tissue, etc for research. We left feeling pretty good about the trial.

Tuesday was the good day. Our lovely friend, Heather, loaned us some beach lounge chairs so we high-tailed it to Galveston for the day. It was pretty windy from the storm that passed through on Monday, but so, so nice. It felt good to wiggle our toes in the sand, breathe in some salt air, wade through the waves, feel the wind in our my hair. It certainly helps you forget your troubles, at least for a little while. I love beach life. If it weren’t for hurricanes and tsunamis, I’d live near the ocean in a heartbeat.

Back at the hotel Tuesday afternoon, Jeff started throwing up.

He vomited again Wednesday morning, but we made it to the echocardiogram, EKG and chest x-ray appointments without incident. We headed to the cafeteria for a small bite. We had just settled at a table when Jeff’s nausea hit him. He looked at me with big eyes and said he needed a bathroom ASAP. Now, we’re sitting in the middle of a cafeteria, Jeff in a wheelchair, and me not knowing where the hell a bathroom is. I hurriedly threw our stuff in Jeff’s lap and attempted to wheel him out the nearest door. Stuff was falling on the floor, his blanket got tangled in the wheelchair wheel and, finally, in the hallway, after several people passed, the dam broke. At least he had a puke bag and those in the cafeteria didn’t have to witness it. Still, it was scary, frustrating, embarrassing, saddening. I just about lost it. Jeff thought I was mad at him. Really? No, I felt like a failure. Like I wasn’t taking good care of him. Just struggling. Bad day all around.

Thursday was a long day, starting at 6:30 with lab work to check platelets, then a bone marrow biopsy under sedation. They were going to start an IV for the sedation and Jeff suggested they use his power port. The nurse said they couldn’t use it because it hadn’t yet been approved by the IV team. Jeff said Well, let’s get it approved. So we went to the IV department to get his port accessed only to find out that MD Anderson’s policy is not to use a portacath that is not in the superior vena cava. The tip of Jeff’s portacath is in the brachiocephalic vein. It’s crap, according to their policy. It will need to be replaced. The IV team went ahead and started an IV to be used for sedation for the bone marrow biopsy and for the CT scan later. I think the doctor took full advantage of Jeff being under sedation because he took biopsies from the left AND right iliac crests. FYI – Propofol makes you really loopy and goofy, so I’ve witnessed. Next came the CT scan in the Radiology Outpatient Center down the street. We were waiting and waiting for the MD Anderson patient shuttle but it seemed it was never going to show up. So we took a $5 cab ride to the facility. Another hour to drink contrast and another 30 minutes or so for the test, then we were able to catch the MD Anderson shuttle back to the main building for the appointment with the stem cell transplant specialist, Dr. Nieto.

About stem cell transplantation… Dr. Nieto recommends an allogeneic transplant – stem cells come from a donor. After the drugs in the clinical trial do their job, more high-dose chemo is given to kill the tumor which also happens to damage/destroy bone marrow and the immune system. The stem cells are transplanted not only to repair damage to the bone marrow but the allogeneic transplant has an added benefit of further fighting cancer cells. There are also risks and complications. After the stem cells are infused, Jeff will need to stay in the hospital (MD Anderson) for three to four weeks. After his blood counts recover enough, he’ll be discharged but must stay with a caregiver within a 30-minute drive of MD Anderson for the next 100 days. We should be able to arrange an apartment in Houston for low or no cost for that time. We will graciously ask for volunteers to relieve me for a few days, maybe a week at a time so that I can be home with the kids for a while too. Before all your hands shoot in the air to volunteer, a la Arnold Horshack (don’t ANYONE say you’re too young to get that reference – humor me and Google him), know that during that time he’ll need to make frequent visits to MD Anderson’s Ambulatory Treatment Center for lab work, blood transfusion, platelets, etc. This means navigating through pretty crappy traffic, paying exorbitant valet/garage parking fees, listening to Jeff’s backseat driving, pushing Jeff in a wheelchair to his destination, picking up prescriptions when needed, then back to the apartment and providing general care, not to mention taking notes about his treatment/progress and keeping me informed. I also don’t know how functional Jeff will be in this post-transplant state; not sure if he will be able to provide his own personal care.

Today was a better day, slightly. We saw Dr. Hagemeister again and he let us know that they had not yet received the pathology slides – the very important slides from the initial tumor biopsy from which the diagnosis was made. We found that the slides were sent just yesterday and will hopefully be in MD Anderson’s possession by Monday. If that is the case, I believe, they won’t need to do the tumor biopsy scheduled for next Tuesday. He also told us that the CT scan shows the tumor has grown almost another centimeter – up to 12.2.

At least we’re home now. So very good to be home. We are trying hard to consolidate as many appointments into as few days as possible to make the best use of our time. We will still be spending many hours on the road. So far, we have at least one appointment next week.