Minor Surgery Day

Yesterday, everyone in Group 1 went to the hospital for a short outpatient procedure: the placement of a hemodialysis catheter. This device is a pair of tubes inserted just under the clavicle, each about the size of a large vein. Together, they allow blood to flow out of the body, through the apheresis machine, and back in again — a key step for the treatment process.

No, this is not a Jamaican hospital ;)The Hospital Experience

And no, this was not a “third world hospital.” Quite the opposite — the facility was modern, clean, and professional. The waiting room bathroom was huge, with a marble shower. Staff were consistently courteous, and housekeeping even checked in during my short stay, asking for initials on their rounds sheet to confirm the cleaning.

Having been through several surgeries before, I wasn’t nervous. The anesthesiologist kept everything completely pain-free, and the procedure itself took just 15 minutes under general anesthesia. No complications, no issues.

Afterward, I rewarded myself with corn-flour quesadillas — my first cheese in almost a year.

Life Outside the Hospital

When we returned to our apartment, we requested a move to a quieter unit. Our first place was across from a disco club blasting music until 5:30 a.m. twice in a week, followed by a jackhammer at 7:30 a.m. — not ideal for recovery.

The hospitality company was very accommodating. They helped us move during a thunderstorm, even providing a shopping cart and guiding us through the basement garage to stay dry. The new unit is spotless (we may be the first to stay here), though it’s missing small things like toilet roll holders and a reverse-osmosis water system. Felipe kindly brought us a 10-liter bottle of drinking water. Last night was blissfully quiet.

Recovery

Later in the evening, I felt some expected soreness from the surgery, but nothing more than what could be handled with Tylenol (Tylex here). This morning I was up at 7 a.m. for my filgrastim injection (a stem cell mobilizer), took another Tylenol, and managed two more hours of solid sleep. By mid-morning, I was pain-free again.

All in all, not bad at all — especially since this was the only surgical procedure in the protocol.

Extras

I’ve also gone back and added photos to some earlier posts for anyone following along.

Yesterday afternoon, I started getting queasy again, and I opted only for a dinner of Ensure. By the way, that stuff and electrolytes have become my best friends. By now, I was feeling like I had the flu coming on.

Like any large clinic, Ruiz has groups of staff that work together as a team. This evening, Dr. Priesca came to administer my evening injection. I told him I was sick to my stomach most of the day, and he started me on a bunch of meds. I went to bed early, waking several times in cold sweats and wet sheets. Eventually, the “flu” broke, and I slept like a baby, waking well-rested at the crack of dawn. I felt so much better, and that’s supposed to be the worst of it. I’m done with the hard part :). Not to tempt fate, I took my morning medication with a bottle of Ensure.

Dr. Leon came by for the morning injection. This is going to be my routine for the next several days, except that on Monday, I go to the hospital to have a PICC line (a big catheter) inserted into a main artery above my clavicle. This “portal” will be used for all future I.V. work, including stem cell harvest, chemotherapy and stem cell transplantation. It will stay in for over a week.

My appetite came back in spades. Judy made me a well-done hamburger with grilled onions on a burnt bun. Delicious. Pretty soon, even that will be off limits after I enter a stage called, neutropenia, when I can only eat reconstituted, freeze dried food, to ensure I consume no bacteria.

Yesterday (Day -10) started out pretty bad. But it ended just fine. Judy went down to the pharmacy and got four bottles of electrolyte drinks, two peach and two coconut. I drank lots of fluids and had lots more infused in my drip. We’re supposed to drink a minimum of three liters of water per day during chemo, and today I clearly met that goal.

I’ve read that there’s a service in Vegas that will bring an I.V. drip to your hotel room if you’ve had a hard night of drinking alcohol. Hmm.

I finished yesterday’s chemo fine, and they gave me a second shot of Amal (anti-chemo-sickness medication) before I left, just for safe keeping. I did need more later, but I ate a pretty large dinner, most of a pre-cooked chicken from Walmart (yes, there's a large Walmart here). I’m already in the “eat carefully” stage where everything needs to be fully-cooked and well-done. We took out the pre-cooked chicken and cooked it even further. Dr. Ruíz said that anything pasteurized is okay, and anything cooked for three full minutes in the microwave should be fine, too. We have our own full-kitchen with a microwave.

This morning, a doctor came by the apartment to give me a subcutaneous shot of Filgrastim, the stem-cell mobilizing agent. This mobilizes the cells out of the bone marrow and into the blood. The drug can become painful to the bones. I’ll be getting these twice-daily for a week now, followed by the harvest (aka apheresis). Apheresis is basically drawing the blood through a glorified centrifuge, which will separate out the blood components by density: white cells, red cells, plasma and stem cells. The stem cells are then cryogenically frozen for Day Zero.

Afterwards, I’ll do two days of strong chemotherapy using mesna and cyclophosphamide. The next day is Day Zero, when I get my stem cells back. Some people start feeling energized with less disability, even before this one hour process is complete. I’ve seen videos online where people clap to your new “birthday” as you return back to the waiting room with the rest of the group. Fifteen of us will have a new, same birthday :).

I was up three times getting sick, which was apparently more than anyone else in Group 1. Four of five of us got sick to some degree from the chemo. One of the big problems was that I couldn’t keep any oral medication down.

I’m back in the chemo chair again now (day -10), but the nurse started me off with a bottle of saline for rehydration, and she included additional medication that neutralized most of the queasiness almost instantly. Ahh. Earlier, I felt hungover as if I had an entire bottle of tequila last night.

Five or six more hours to go, then I’ll have a week off from the cyclophosphamide. We’re supposed to feel better this weekend. I’ll give myself a break from my strict, anti-inflammatory diet. However, for the next few weeks, everything I eat needs to be either pasteurized or thoroughly cooked because I'm thoroughly immunocompromised now.

II met with the head hematologist, and he gave me the go-ahead to start high-dose cyclophosphamide, one of the two primary chemotherapy agents we’ll be using. We went over the battery of test results, and the doctor said I’m definitely strong enough for the treatment.

Cyclophosphamide is a pretty harsh chemo agent. They’ll be administering four doses, much less than used to treat cancer. The drug is diluted in a saline solution and dripped into my bloodstream through an I.V. It will begin to kill off my immune system. There are a few other medications included in the drip to help with side effects. I’ll do the same treatment again tomorrow, then in nine days, I’ll do two more again after they harvest my stem cells.

I’m sharing a room with four other people in my subgroup, we are from all over the U.K. and USA. Each of us is hooked up to a drip machine and each has a caregiver seated next to them. I’m the only male in the total 15 people here during this four-week treatment period. The women are of varying ages, none younger than 30 years, and they have varying levels of disability.

Ten minutes into the drip, I was very uncomfortable, but it got better soon afterward. I’m about a half-hour into the several hour process. No photos are allowed in the chemo room.

I’ve had dozens of I.V.s inserted over the last few years, and I must say that the nurse who inserted this one did a fantastic job.

Earlier today, we learned a lot more about Clínica Ruiz. To date, they've done 99 HSCTs for MS. (I think the clinic in Moscow has done around 550.) Every one of them has made it through the treatment, and only three people had to be admitted to the hospital, primarily for dehydration. There are 300 people working in the entire clinic, and they see 1,000 people per day for all kinds of ailments. We are in a special part of the building. The staff is very friendly and professional.

I’m not sure yet when they shave my head. This is done so that when I start losing my hair due to the cyclophosphamide, it doesn’t start falling out and making a mess.

By the way, I found this amazing presentation from one of the foremost experts in HSCT for autoimmune disease. It pretty well sums up everything, and had I found it sooner, I would have omitted some of the background posts.