I finished my sixth and, hopefully, final treatment today. During this last treatment I got to know two of the “rowdies” from the ovarian cancer group. Unfortunately, both weren’t in the best of health. Dee has had ovarian cancer for six years and just got out of the hospital after spending two months being treated for septic shock. Even though she is quite weak her spirits are high. Philomena has colon cancer and it is spreading. Rightfully so, she’s been depressed about her condition and has lost her appetite.
We talked a lot about how people have the right to feel the way they do about their illness. Philomena was saying her husband, while supportive, doesn’t understand what she is experiencing and wants her to “snap out of it”. I mentioned to her the times I feel, “Oh woe is me”. I can see why having a support network is such a good idea. Philomena said she was feeling better already being surrounded people with similar illnesses.
Dee, the truly rowdy one, was silenced by Benadryl. She tried to hold a conversation but most of her thoughts were jumbled, and then she dosed off. There was, however, something cool she shared–she is going to be a 60-year-old bridesmaid! Her niece asked her to be a part of her wedding, so that was neat.
A third gentleman, I don’t know his name, must work the night shift because every time I see him he’s catching z’s! Today he was sporting his usual Blackhawk Starter jacket, feet up on the recliner, eyes closed, and mouth wide open. The only time he wasn’t in that position was when he was wake and first sat in the chair. His dose of Benadryl allowed him to take a five-hour nap.
In six weeks I’m supposed to have another CT scan. From that the doctor will determine what, if any, maintenance program I’ll be on. Since I am doing so well, Dr. Rosado seems to think only periodic check-ups are necessary. If the CT scan is promising it means no more chemo!
Big John and Paul were trading stories about mint. Paul was sharing how as a kid he worked on a mint farm, handling the leaves without gloves. Later that day he had to relieve himself. You can imagine how that must have felt! Big John topped that one. He told a hospital story about a nurse who was using the patient’s own prescriptions to treat a severe case of hemorrhoids. The nurse grabbed a tube with the word ANAL and the patient’s name covering the rest of the word. She applied the ointment and the woman screamed, “Fan me! Fan me!” Turns out the prescription was ANALGESIC so she was applying something similar to Ben-gay!
I was wise enough this morning to take my prednisone first thing so I should have a better chance of getting a restful sleep.
The CT scan will be schedule sometime around July 18. Keep your fingers crossed. That may very well be my last blog post!
This was a relatively busy week, but I have some good news. After two treatments my CT scan shows “dramatic improvement with reduction is size of the spleen and essentially complete resolution of the left pelvic adenopathy (referring to the lymph node). Previously seen left hydronephrosis (kidney obstruction) has resolved. Persistent large right groin lymph node although also showing improvement.”
If you are a numbers person:
1. The size of the spleen is now at 4cm. Previously it was 6cm.
2. The left groin lymph node only has a small area of residual tissue measuring 1.5 x 1.5 cm. Previously, it was 3.5 x 5.5 cm.
3. The right groin mass is now 2.3 x 3.9 cm. Previously it was 3.3 x 4.5 cm.
So the right groin lymph node is a stubborn little sucker. While the size has decreased, it hasn’t decreased as dramatically as the others.
The most challenging part of the CT Scan was drinking that awful barium. I’m not sure which was worse, the quantity or the taste. I had to chug one big bottle two hours before the appointment, one half of a second bottle an hour before the appointment, then the remaining barium a few minutes before the scan. At home I tried mixing it with chocolate syrup. No matter how much Hershey’s I added, the taste didn’t change. I resorted to holding my breath and closing my eyes while swallowing the stuff.
When I was adding the syrup it reminded me of when I was little and my parents took me to the doctor because I drank a bottle of Bosco syrup. But I won’t tell you how, as a kid, I would come home from school, melt butter on the stove and drink it! That’s what latch key kids did in those days. I don’t want to know what they do now!
I moved my chemo treatment to Wednesday so I could meet the ovarian cancer group, but I was disappointed that the three social directors, the rowdiest ones, were not there. They’re off treatment for a while because each is in the hospital. Big John, the nurse practitioner, says they should be back on track soon and that I will enjoy them.
This treatment took a bit less time. I was in at 10:00 and out at 3:00, with no problems whatsoever. I spent most of the time reading How the Brain Learns Mathematics, which gave me some ideas for how to improve my math teaching. When I got home, I popped the prednisone which made me wired for the rest of the day and night.
I couldn’t sleep so about 12:30 I went downstairs and emailed a colleague about a math investigation idea that came to me while I was reading during my treatment. I really couldn’t sleep the rest of the night. The next morning I took the prednisone again and that wired me for the rest of the day.
John and I had an interesting conversation when I came in for my nuelesta shot. We talked about the Archdiocese’s online survey. He hadn’t taken it yet and neither did I. I did mention to him that on the radio several listeners thought the survey wasn’t designed well, that opinions on some topics were combined so there would be no way to separate out how a Catholic feels about abortion, capital punishment, or the current priest scandals. I’m skeptical about the survey. How do you know that only Catholics are taking it? Some Tea Party Protestants might sneak in and skew the results!
I met with Dr. Rosado afterwards to talk about my progress, which I mentioned at the top of this post. We were both extremely pleased with the overall results, but a bit flustered as to why the one lymph node isn’t responding as well as the others. I told him I could feel the tissue was hard and he confirmed it. He indicated that at the time of the scan I had only two treatments. With a third now under by belt, the plan is to check my progress after my fourth treatment with both a physical and CT Scan. My next chemo is May 5 and my follow-up oncology appointment is May 12. I imagine my next scan will be the week of May 17.
For the most part, the side effects have been relatively minor. I’ve lost a bit of hair, lost some weight, lost some energy, and at times gained some constipation and irritability. I asked him if he was giving me a kiddie cocktail or Jack Daniels. He showed me the chemo dosages and assured me that I was getting Jack Daniels. It’s not only the progress they’ve made in developing cancer drugs with minimal side effects, he says every patient reacts differently. I’m very fortunate.
A bit of reflection
When I was first diagnosed, I reminded him of our conversation of how concerned I was about returning to work, but then came to the realization that I need to focus on me. What helps is my medical benefits afford me the opportunity to do so. Using this time off, I’ve been able to concentrate on my health. It’s not about only being able to schedule doctors’ appointments at will. It’s about reducing stress, having time to exercise to regain strength, and focusing on what’s most important.
Of course I think about school and how I plan to make some changes in the classroom. In a way I’ve used this time as professional development.
On a personal front, I haven’t had any popcorn since I’ve been home. If you’re not aware, I am notorious for eating the butter and salt that line the sides of the microwave popcorn bag. Cutting that out should reduce my high blood pressure and cholesterol dramatically!
Round 2 went quite smoothly. I only felt a slight swelling in my throat. Also the nurses were able to speed up the drip and I finished the treatment two hours earlier than the first round. My first round lasted until 5:15. Big John says by treatment four I should be able to cut the time by an additional 2 hours.
Claire is home for spring break so she stopped by to entertain me with a game of Scrabble. She whooped me the first time, but I beat her in an abbreviated game. She, however, would tell you she had won. I played the letter F to make the word “of” on a triple word score in both directions, scoring 30 points. When I heard, “Oh, man! I was going to play my K there and I would have had 36 points.” I told her we’d count her points and I’d see if I could take my remaining letters and play them somewhere else to beat her score.
Paul, once again, was with me. For about an hour he was in his “mobile office” sitting in on conference calls in the van.
Big John was telling me about the Wednesday ovarian cancer group. He thought I might enjoy their antics so my next treatment will be moved to Wednesday. I understand the group’s rowdy social director is back in the hospital, but hopefully she’ll be out soon and I’ll get a chance to meet her.
When I got home I popped the prednisone in my mouth and proceeded to have a sleepless night. Lately I’ve been waking up with severe night sweats (No, this is not related to menopause!) In the morning I not only smell of perspiration, but of chemicals too. Tonight should be a better night for sleeping because I took my dosage of prednisone early this morning.
In ten minutes I’m looking forward to a bowl of oatmeal. Since I’ve been home I’ve been trying to make the darn thing more creamy, with a lest flaky texture. I tried grinding the oats in a mini food processor, but that didn’t work. This morning I’m trying a premium brand called John McCann’s Steel Cut Irish Oatmeal. I don’t think it’s a misspelling of John McCain, whose presidential campaign turned to mush.
Remember how I said any future swelling will be related to the prednisone? I lied. My legs turned into sausages, but thankfully only for a couple of days. Feeling pretty good and in need of some exercise, I worked out for the first time on a Bosu ball. Even taking it gradually, it was a workout. The balance required forces you to use muscles you never thought your had. All told, I was only on the thing for 20 minutes but it was enough to make my legs look like Bob Evans sausage links.
I spent most of Friday and all of Saturday with my feet up. It was emotionally painful to be at a wedding reception wanting to dance, but forced to sit with my legs elevated. At times I felt sorry for myself and had an Oh, woe is me attitude. On Sunday I realized how stupid that was.
I’m not going to spend much time on this, but I think I had a mini-stroke. I woke up in the middle of the night unable to speak. I was trying to form words, but my speech was garbled. It lasted for no more than two minutes and it was gone. Dummy me, I didn’t bother Paul about it until early that morning.
I was wheeled to my eighth floor room around 10:30AM and one of my first questions to the nurse was, “Do you know Cora?” Her eye’s brightened and said she had worked with her for several years. I told the nurse, “Please tell her Ellen DeGeneres said, ‘Hi!’”
Daisy put a hand in her pocket and pulled out the hospital cell phone. “Cora, Ellen DeGeneres is here. She’s testing which floor has better service, the fifth or the eighth.”
After two days of testing, the only thing they could confirm was that my white blood cell count was quite low. I needed to stay a second night for monitoring. The next morning it dropped farther so the oncologist an injection of Neulasta, with a follow-up shot in his office the next day.
Internist appointment, Thursday, March 11— If a patient is one who waits, what do you call a doctor?March 22, 2010
I’m working on a witty synonym that could be used on the Miller Analogies Test.
Today I waited more than 40 minutes to see the internist. To pass the time I read pharmaceutical brochures on asthma, diabetes, and heart disease. Then my mind wandered to Jerry Seinfeld’s bits on doctors and pharmacists. They start at the 3 minute mark.
Finally the doctor arrives. It’s new to me but every doctor in that practice carries a laptop. We exchange pleasantries but nearly ten minutes pass before she speaks to me. The only sounds are from the keyboard—the key tops clicking, the hard sound of a pinky striking the enter key, and a soft tap from a thumb pressing the space bar. My head is down, waiting. I look up to see her eyes concentrating on the screen, but I can’t see what she sees. Having waited long enough I ask, “Are you updating your Facebook?”
The doctor apologizes, saying she’s spending more time on my health history than actually examining me. I remind myself that she comes highly recommended and that, once again, I haven’t learned to keep my mouth shut.
I’m pleased this visit ends up being routine, with follow up appointments for pap smear, breast exam, and colonoscopy, when the oncologist thinks it’s appropriate.
Dr. Rosado: “Cora says, ‘Hi!’ She wants to know if I can give her your phone number.”
Me: “Absolutely! I’ve been wanting to find her—in a positive way.”
Dr. Rosado: “She and another nurse, sorry I don’t know her name, say you remind them of Ellen DeGeneres.”
Back in the hospital, Paul and I were getting a bit of exercise walking the hospital floor. I think it was a Tuesday because it was couples only. We stopped and chatted with the nurses about how I breathe from my chest and not from my abdomen. The nurse standing next to Cora informed me of an interesting statistic, “Ninety percent of women are shallow breathers.”
It didn’t take me long to respond, “Well if men are deep breathers, then women are deep thinkers.” The nurses and I bonded after that.
Of the four appointments I had this week, this one was the highlight. Learning that Cora asked about me got me thinking of how I can reciprocate. Perhaps a trip to the hospital’s fifth floor, with a bouquet from Cookies by Design, is in order.
Other reasons why this was the best: 1. Dr. Rosado had good news and 2. He was punctual.
After the first chemo treatment the tumors have shrunk about 2 centimeters. The swelling in my leg has vanished and any future swelling I may experience will be related to the prednisone. He even mentioned that if things continue well, I may only need six instead of eight treatments. Which means my last chemo cycle may be in June instead of July.
The other great thing about this appointment was that Dr. Rosado kept to the schedule. I arrived on time and he saw me promptly. I wish other doctors would take note of that. My dentist does an outstanding job.
I’m not sure why I have wait as long as I do, even when it’s nearly the first appointment of the day.
The major side effect is cramping, similar to having a menstrual period. It can last several hours, or come and go. The first three days of being on the steroids seems to have been an energy booster. I’m been having trouble sleeping. The past two nights, however, my sleep pattern seems to have returned to normal. Although I do notice I am beginning to feel tired by 4:00.
I feel like I’m packing to go to the beach. I have everything but a blanket and sun-screen. My re-usable bag holds my iPod, Kindle, slippers, and two paperbacks—This I Believe and Chicken Soup for the Soul.
My treatment is 6-8 cycles of R-CVP Rituximab, cyclophosphamide, vincristine and prednisolone.
After analyzing a blood sample, I’m ready to begin. The nurse practitioner forewarns me that I will feel cold on the inside. I also am told today will be a long day, as they begin the IVs slowly to see how my body reacts.
About two hours into the treatment, as they increase the drip, I feel my throat begin to close up, it’s only a sensation, not the real thing—I think. I’m also developing a stomach ache. They reduce the IV and within ten minutes I feel normal (except for the coldness).
Paul is with me the entire day. What a trooper, and how boring it must have been for him. My good friend Joan is by my side for the better part of the day. She left about 2:30 with knitting instructions for a chemo turban. I’m not sure how much hair I will lose, but it’s a cool headpiece even if I don’t need it!
Now I’m able to get to know Big John, the nurse practitioner who hails from Georgia. He shares with me his interest in genealogy and I come to learn that the only place outside of the UK where lineage is important is if you live in the Confederate South. He tells me how his plans to attend Grinnell are thwarted when his mother dies unexpectedly and his father insists on him going to college closer to home. I learn, as he puts it, “he gave his life to God and God gave it back to him.” He left the monastery to become a nurse.
5:15 PM. I’m the “Last Comic Standing”. All the other patients have long gone home. Even two other nurses have called it a day.