November 30, 2006
Yesterday was my first day of chemo. After reading many people’s stories online, I had some idea what to expect logistically, but people’s reactions vary widely. Some had virtually no side effects during chemo, until the later months (the effects are cumulative), where others had significant side-effects right from the start. So far, I think I’m falling somewhere in between. This morning is the first time I’ve had any interest in turning on my laptop, which for those who know me well, means I wasn’t feeling too well after getting home from chemo. I’m presenting here a timeline of my day, which I’ll also be posting on the Hodgkin’s Forum “Chemo 101″ thread so future newcomers to this can compare my experience to others.
- 7:30am – Finished shaving my left arm, since they always use so much tape with the IV, and it’s extremely painful getting the IV removed from my hairy arm at the end of the day. This will become ironic around 11:30.
- 7:45 – Had a light breakfast – english muffin with jelly, and orange juice.
- 8:00 – Took 1 Emend (nausea preventive) pill. These pills are $140 each, and come in a package of 6 (three for this treatment, and three for my next treatment in two weeks) for $840. My co-pay after insurance is $40. Whew! Got in the car to drive to Fairfax Oncology offices for 9:15 appointment.
- 9:00 – Arrived at office (traffic was about average, despite heavy fog with 1/8 mile visibility, which closed down Dulles, National, and BWI airports). Fortunately we could use the HOV lanes on the Dulles Toll Road since there were two of us.
- 9:15 – Met with financial adviser to review liabilities and payments. Each chemo visit (I’ll have 12) costs $4,030, for which I have a $15 co-pay. Now I’m starting to appreciate United Healthcare insurance a little more than in the past. The day after each chemo I come back for a few minutes for a quick shot of Neulasta (white cell growth factor) which is $6,892 each (100% covered!). I’ll sometimes need a shot of Aranesp (red cell growth factor) which is $2,400 (again 100% covered). If my platelet count drops, I’ll need a platelet transfusion which we didn’t discuss costs of yet. Also picked up some hot tea, as it was a little cold in the office. I found myself sipping hot tea through most of the day.
- 9:30 – IV install #1, left arm. Needle popped out of or through the vein after a few minutes, so we had to do a new one.
- 9:35 – IV install #2, left arm, different spot. Start saline drip. Sign “consent for treatment” form. Reviewed Monday’s blood test results:
- White blood count (WBC) was abnormally low at 2.6K cells per uL (microliter) of blood. Normal range is 4.6K – 10.2K. This is also the lowest I’ve ever seen my WBC in 4 years of reviewing my routine tests. My neutrophil count (the white blood cells that attack bacteria) was low, at 1.5K. Normal is 2.0K – 6.9K. The nurse sent an email to my oncologist asking if we could proceed with chemo today.
- Red blood hematocrit (HCT, the % of blood volume made up of RBCs) was also low, at 37.1%. The normal range is 39.0% – 53.7%. If my HCT drops below 36% at any time, I’ll need an injection of Aranesp to boost them. My HCT has historically hovered in the 37% = 38% range, so this wasn’t much of a surprise. I’m folic acid anemic due to my Crohn’s Disease, which probably hasn’t been helped by removing 4 inches of my terminal ileum, which is the only part of the intestine that absorbs B-12, which also is needed for RBC production. I’m taking Folic Acid and B-12 supplements now to see if that helps.
- Platelet count (needed to prevent bleeding and to form clots) was normal at 178K per uL. Normal range is 142K – 424K. Glad this one’s normal, since there’s no pills or shots to fix it if it’s low. The only option is a platelet transfusion from someone else’s blood. Platelet count below 100K means chemo needs to be delayed.
10:00 – Was offered lorazepam (a.k.a. Ativan) to reduce anxiety and relax me. It’s a member of the same drug family as Valium. I was actually not nervous at all, and wanted to be fully alert during this, so I declined.
10:05 – Received two anti-nausea drips via IV – dexamethasone (a.k.a. Decadron) and Palonosetron (a.ka. Aloxi)
10:30 – Nurses got email back from the Oncologist saying to proceed with the chemo, since the Neulasta shot tomorrow should help my white count significantly.
10:40 – Was given Tylenol and Benadryl in preparation for my Bleomycin (The “B” in ABVD chemo) injection, since the Bleomycin causes fever and can cause an allergic reaction.
11:00 – Was given a small dose of the Belomycin subcutaneously (under the skin) on my left shoulder. Need to wait 1 hour to see if I have an adverse allergic reaction. However, the rest of the chemo regimen can proceed.
11:10 – Started the doxorubicin (a.k.a. Adriamycin, the “A” in ABVD) injection. This stuff is neon red, and is kinda fun to watch it go through the IV tube (I mentioned it was like drinking through a Krazy Straw. One unusual side effect is that it turns urine bright red almost immediately, something I noticed during my first bathroom break. The nurse puts the needle into one of the IV tubes, and very very slowly pushes the fluid out of the syringe. It took about 20 minutes. I felt no ill effects during the push.
11:30 – Started the Vinblastine (the “V” in ABVD) injection. Same deal as above, very slow push into IV from syringe, but this time the drug was clear, not red. Almost immediately, we all noticed my veins in my arm turning red. The nurse stopped, and consulted the pharmacologist, who said it was a delayed reaction from the previous drug, Adriamycin, causing irritation to my vein. As we watched over 5 minutes we could see it spreading and getting more red, like someone was drawing lines on my arm with a red pen. We flushed the IV with saline for a while but it didn’t help. They decided to give that vein a rest and switch to a new one (i.e., my third IV of the day). This time they used my right arm, which I had neglected to shave, since I wasn’t expecting something like this to happen. Since I have long arm hair, I now got to look forward to a painful IV removal later in the day. We put ice on my left arm. The nurses also went to find my oncologist to scold him for not telling me to get an infusiport installed. This is a port that is surgically implanted under the skin just below the collarbone, which connects directly to one of the large veins in the chest. This makes it much easier to start the chemo treatment each time, since rather than having to set up an IV in an arm vein, they just poke the IV into the port in the chest. Since the chest veins are larger and stronger, there is less chance of irritating the veins with the caustic chemo chemicals, and the chemicals can be injected/infused more quickly. My oncologist called my surgeon’s office and they’re setting up the outpatient procedure for before my next treatment in two weeks.
11:55 – We finished with all those complications, and pushed the Vinblastine into my new IV in the right arm. It went uneventfully.
12:10 – Finished with the Vinblastine, and switched to the Bleomycin push (the one we had tested subcutaneously earlier). It went uneventfully. By this time I had a funny taste in my mouth, but a wint-o-green lifesaver helped immensely.
12:25 – Finished the Bleomycin, and started the Dacarbazine. This one isn’t an injection, it’s a 90-120 minute long drip from an infusion bag (a green bag, which protects it from light) hooked up to the IV.
12:30 – Since the drip was going to take a while, Kathie got the lunch we’d brought out of the fridge… I ate my turkey, ham, and swiss sandwich, with a side of pringles and coke, without any nausea or strange taste.
2:30 – Finished the Dacarbazine drip, and got disconnected from everything, and sent home! Found myself napping in the car (Kathie was driving!) which is something I can never do, so I was definitely feeling tired / fatigued.
2:40 – Noticed my right wrist and hand (IV was in right wrist for most of the chemo) had absolutely no strength or dexterity. Noticed this when I tried to open the car door and couldn’t. My hand would keep slipping off the door handle – I couldn’t squeeze the handle. This continued for a while after I got home… I couldn’t operate the Tivo remote, couldn’t even close my hand into a fist. Was a little worried, but it recovered completely by around 6pm.
3:15 – Got home and crashed on the couch. Watched some Stargate SG-1 on Tivo but fell asleep halfway through. Woke up after it ended, and felt fairly nauseous and dizzy, but that passed within 5 minutes and I felt pretty normal, except for still feeling tired and weak. Drank lots of water, apple cider, and orange juice during the afternoon to stay hydrated.
6:00 – Ate dinner – chicken noodle soup from a can, plus Ritz crackers and Sierra Mist. No nausea or funny taste. Watched “Monster In Law” on NetFlix – wasn’t too impressed.
8:00 – Could barely keep myself awake, so I went to bed. Tossed and turned for a while so I took some Ativan (see 10:00am) which the nurse said would help me sleep. It did, but I woke up an hour later sweating, with a light fever. The nurse warned this would probably happen as a side-effect of the Bleomycin, and that I should take Tylenol, which I did. Slept pretty well through the night until 5am this morning when I was suddenly wide awake, and feeling pretty good.
Well, that’s a lot to write (and read), but it’s a full account of a busy day. I have to complement the entire staff at Fairfax Oncology – every person there was extremely friendly, helpful, accommodating, and patient, and made the whole experience as pleasant as possible (fetching me a heating pad when they noticed my IV hand was very cold, answering every little question we had, etc.).
I promise I’ll keep my next entry short 
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November 27, 2006
The weather the last couple days has been unseasonably warm, so it seemed like a great opportunity to put some blue icicle Christmas lights up! Kat did most of the work, since I have no interest in being 20 feet up a 28 foot extension ladder. We’re going to try to extend them the rest of the way around the garage roofline in the next day or two. We’ve also got a 6-foot lighted inflatable Homer Simpson on the lawn
We’ve created a St. Lucia photo gallery with over 100 photos from the vacation on our main web site. Even though the weather here isn’t too bad for late November, we’re definitely missing the Caribbean weather!
Still no luck finding a Nintendo Wii. We got to Best Buy in Reston just before they opened on Sunday morning, but there was already a line of at least 30 people, and all the in-stock units had already been spoken for. We’re gonna give it a rest for a week or two and then see where things stand.
Today was my pre-chemo blood test, and on Wednesday I get my first chemo treatment, so I should have plenty to write about after that! I also picked up the results of the blood test I had about a month ago, which showed low white and red blood cell counts. That was just two weeks after my surgery, so hopefully my counts are closer to normal now. I need to have normal (or at least close to normal) red counts, white counts, and platelet counts before each chemo treatment in order to proceed.
It’s good to be home with the dogs again! Max (photo, right) is his usual goofy, cuddly self, and Sheba is still the spoiled princess who has to have everything done her way. We heard from her sitters that Sheba was a big hit at the elementary school bus stop every morning.
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November 24, 2006
Yesterday we prepared the traditional Thanksgiving feast of… lasagne! It was quite yummy, and a lot less involved to prepare. We’ll be doing turkey at Christmas, so we don’t mind waiting a little longer for it. Besides, can you really prove that the pilgrims didn’t have Lasagne with the American natives?
Nintendo Wii shopping today was a bust… everyplace was sold out really early, and most places have no idea when they’ll be getting their next shipment. Still, we weren’t about to get up at 5am to go shopping. It’s just not that worth it!
In one of those freakish coincidences, Kathie and I went to visit Caleb and Val today for lunch… Caleb was cooking for us, and wanted to make something that we probably hadn’t had recently, so he did some thinking on “what food do people probably NOT eat around Thanksgiving?” and came up with – you guessed it – lasagne! It was quite excellent, so we don’t mind having it two days in a row, plus it made for a pretty funny lunch discussion. It was good to see Caleb and Val again, and their son Emory for the first time, since we haven’t been able to get together since their wedding!
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November 21, 2006
As we’re packing up for our flight back to the cold of Virginia’s winter, we decided to summarize some of our general impressions of St. Lucia:
Weather
Currently St. Lucia is still in the rainy season so the weather changes at the drop of a hat. If it’s raining wait 5 minutes and it will be bright, sunny, and very warm. The temperature is usually between 80-85 degrees each day, but since we’re so close to the equator, the sun is a lot more intense and it feels closer to 90-95 degrees. There is a constant breeze blowing on the coast so it helps with some of the humidity. For Kathie who is almost never warm, the sun and temperature felt wonderful and she could probably live here quite comfortably (with the exception of the mosquitoes). Mike found the temperature borderline hot and appreciated the air-conditioned rooms after a while in the heat.
Food/Service
We found most of the restaurant service to be extremely relaxed. We’d get service, but it could take a while before the wait staff meandered over to our table to take our order, plus we would often wait at least 20-30 minutes for our food. This is the off-season so there were very few tourists at the restaurants so we know it wasn’t due to crowds. Since this happened at every restaurant we stopped at, we figure it’s the norm here. As in most european countries, people seem to eat much later here so some restaurants don’t even open till 7pm. Since we’re such early eaters, we were often the first one in the restaurants. The food here seems to be average and a little expensive. The food on the Brig Unicorn was quite good – the lamb and chicken, but the restaurant food wasn’t as good as we hoped.
Hotel
In general, we tend to prefer the comfort and service of a nice hotel but we got some really good experiences staying at a non-inclusive hotel. Bay Gardens is quite nice for it’s price range and the staff was very friendly and helpful. The front desk personnel helped us figure out the right bus to take, the fare for taxis, and various tour sign-ups. Bay Gardens hotel is very close to Reduit Beach and the local restaurants so it was very easy for us to walk down to the area to find food, plus the supermarket was between the hotel and beach so it was easy to get some snacks and breakfast food. Since Bay Gardens is located in Rodney Bay, we were close to all sorts of activities. A lot of the all-inclusive hotels are further away from the main city so self-exploring is more difficult and requires taking taxis.
Locals
We got mixed reactions from locals. Our first bus ride, one of the women on the bus told us where we needed to stop and told the bus driver when he passed our stop. She wished us a good time here as she left. Others would just stare at us or avoid us as we were on the bus or walking the streets. Some of the locals would wave as we passed them while others would leer. So no different from the US really. The local vendors were definitely annoying though. Random strangers would flag us down, ask our names and try to sell us something. “No, thank you” was not very effective. In main city areas where there are more tourists (ie Castries harbor where cruisers would disembark), the locals may not be as aggressive since there are so many tourists to flag down, but in the Rodney Bay area, they will continue to harass you until you walk away or buy something.
Closing Thoughts
The island is extremely beautiful with lush vegetation and flowers blooming everywhere. As all caribbean islands, the waters are warm and blue and so much nicer than the beaches on the east coast. St. Lucia seems to still be growing its tourist business and is less crowded than most caribbean countries. Most of the tourists here seem to originate from the UK and European countries. The buildings are very close together, the shops are small, and the roads are rather narrow. We would recommend taking the taxis or buses here and not renting a car. The locals drive pretty quickly and on the left side of the road. As with other Caribbean countries, we enjoyed staying here for the week but probably would not come back since we’ve seen and done most of the main sites here, and there are so many other places in the world to left to visit!
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November 21, 2006
Day 5
Today was mostly dedicated to the full-day sea and land tour aboard the Brig Unicorn – a 140 ft replica of a 19th century Brig with 6,000 sq ft of sail. It has played a role in several films, most recently Disney’s “Pirates of the Caribbean”. After eating a light breakfast in our room, we met the shuttle which took us to Rodney Bay Marina. There were probably about 40-50 people on board, almost all non-American, something we’ve noticed through this whole vacation.
We boarded the Brig and headed out of Rodney Bay. We got to see a great view of Pigeon Island and the peaks we climbed yesterday. The day was quite beautiful with very few clouds so we got some great views of the island. We sailed south, passing Castries harbor with a cruise ship in port. Apparently Castries harbor can hold up to five cruise ships at once, but it must get really tight there, especially with the airport right by the harbor. We continued along and passed some of the larger and nicer resorts like Almond Morgan Bay and Windjammers Landing. There were several small fishing villages down the coast, and finally we reached Soufriere. As we were approaching, we had a great view of the Pitons, two volcanic spires rising side by side 2,500 feet from the sea. They were quite an awesome sight looking straight up from the harbor, and are St. Lucia’s main landmark.
We disembarked from the Brig Unicorn and took buses to Sulphur Springs, the world’s only drive-in volcano. As we approached the park, we could already smell whiffs of the sulphur coming from the springs. This volcano is constantly venting sulphur gas and the smell once we got close was awful, like rotten eggs, and very strong. The area had several pools of violently boiling black water. Our guide warned that the steam venting from the pools was super-heated, and was over 270 degrees F. The water is black due to sulphur and iron mixing together. It’s definitely something neat to see, but probably not someplace you want to spend more than 20 minutes. By the time we left, we were really looking forward to being able to breath normally again and get away from the stink.
After Sulphur Springs, we headed to a nearby waterfall and small botanical garden. Several of the group swam in the water but we decided to wait to go swimming in the sea. The botanical garden was quite pretty with lots of lush flowers and plants. Greenery sure grows big in the Caribbean with all the rainfall. After the waterfall, we headed back to the ship for lunch. They provided some rice, lamb, chicken, potato salad, mac & cheese, etc. The food was pretty good and the drinks they provided were also quite good (rum punch, fruit juice, soda). After lunch, we anchored a few hundred feet off a nearby beach where we got to jump off the boat and go swimming in the very refreshing, very blue sea. The water felt great, but we couldn’t avoid the pushy vendors even here. Several locals were lying in wait in kayaks and paddled over to our boat to sell conch shells, wooden small boats, and more necklaces. The local vendors were most annoying during this entire vacation.
Our only disappointment in the trip was that even though the ship had sails unfurled all day, we were actually being driven by diesel engines, not the wind, which wasn’t what we expected. It appears that’s the norm, and the sails are just for show. In any case, we arrived back in Rodney Bay around 4:30pm and the bus took us back to our hotel. After a shower, we headed down to Reduit Beach area to get dinner at The Lime. Many tourists recommended the Lime as a good place for local food and cheap prices. Kathie did not like her seafood fettucini at all – they used krab (fake crab) and the rest of the seafood was tough! Mike liked his ribs, but the prices weren’t particularly cheap and the Lime didn’t seem to have much local food for dinner. To make up for Kathie’s disappointing meal, we stopped at Elenia’s ice cream shop again for dessert. Yum!
We have to pack up tomorrow morning and head out to the airport at noon. Since we’re leaving out of Hewanorra Airport in the south, it will be at least an hour and a half taxi ride to get there.
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