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 :-)
