Jennifer's Health and Travel Update...Archives from 2003
Friday, May 2. Jennifer had surgery at Shands Hospital in Gainesville to remove a brain tumor. The surgery lasted six hours, and the surgeons did all they could to get all of the tumor. It had spread more than they had anticipated, and they were very concerned immediately afterwards about the effects of the surgery on Jennifer's ability to talk. However, to everyone's relief, she started talking as soon as she came out of the anesthesia. She went from the Operating Room to Recovery to the Intermediate Care Unit without additional problems.
Saturday, May 3. Jennifer did well enough to be moved to a regular room in a wing of the hospital devoted to patients recuperating from surgery. A complication that is apparently common to this kind of surgery is major swelling of the face, beginning on the day after. This was uncomfortable for Jennifer, especially as her left eye was swelled shut for a day, but several nurses commented that it wasn't as bad as they've seen. They managed to remove very little hair, and she doesn't have a bandage over the incision, so except for the swelling it's not easy to even tell that she had surgery.
Sunday, May 4. The swelling decreased somewhat. The incision itself continued to heal nicely. Jennifer had trouble sleeping, partly because of the usual need to take hourly pulse and temperature readings, etc., and partly because her roommate, an elderly woman with breathing problems, required emergency care in the wee hours. They then moved in another woman who was very quiet, but who had a noisy family. Fortunately, a single room opened up and they asked if we wanted it. We did. It was twice as roomy and beautifully quiet. Jennifer didn't need any more morphine, but continued needing another pain killer.
Monday, May 5. A physical therapist got Jennifer out of bed and walked with her (very slowly) around the area. The therapist was pleased with her stability, and prescribed four walks a day. I accompanied Jennifer on the other three walks, and she increased both the distance and the pace (somewhat) each time. Jennifer spent much of the afternoon and early evening sitting up in bed, and was in great spirits (especially during a visit with her cousin from Orlando).
Tuesday, May 6. The doctors decided that Jennifer could go home, and she was eager to. She was discharged after lunch, and we took a leisurely drive home.
Wednesday, May 7. We got the results of the pathology report this morning. It could have been better. Part of the tumor was malignant, and Jennifer will need considerable follow-up treatment. We'll go back to Shands Hospital some time between now and next Wednesday for consultation with the radiation and chemotherapy experts. Jennifer probably will need radiation therapy each weekday for six weeks, followed by (or possibly at the same time) oral chemotherapy. We don't know yet whether the treatment will be at Shands or here in Tallahassee. It will start in about two weeks, after the incision has fully healed.
Thursday, May 8. We're still waiting for the radiation and chemotherapy people to let us know when we can go down to Shands to make plans for Jennifer's treatment. Apparently they need to do some coordination with Capital Health Plan first.
Jennifer was sitting up much of the morning and part of the afternoon today, and went for a good walk outside. She still needs the pain medication but not as often as before. The swelling has gone down enough that she can wear her glasses (it helps that the frames are quite flexible), so she can watch a little television now.
Friday, May 9. Still waiting for the radiation and chemotherapy people to let us know when we can go down to Shands to make plans for Jennifer's treatment. We're still hoping we can have this consultation before leaving for Massachusetts Thursday.
Jennifer continues to improve. She is needing less pain medication and being more active.
Saturday, May 10. Jennifer had a great day today. This morning she went with me to a nursery to buy rose plants for one of her grandmothers, and this afternoon we all went to a cook-out at Leon High School for the Lion Steel steel drum band (her sister Monica is a member). She needs to rest after this kind of exertion, but isn't napping all day. The swelling continues to decrease.
Sunday, May 11 & Monday, May 12. Jennifer had two more good days.
Tuesday, May 13. Jennifer's incision is starting to itch. That's good, as it is a sign that the healing is progressing nicely. It won't be pleasant if it all itches at the same time, as it's about 10 inches long, but she'll deal with it more or less cheerfully--as she has everything else. The swelling in her face in nearly gone, and she generally feels pretty good.
Wednesday, May 14. Things are back on track today. Late yesterday afternoon we were informed by Capital Health Plan that they were going to deny coverage of Jennifer's radiation and chemotherapy treatments at Shands. They wanted us to do everything in Tallahassee, instead. The Tallahassee facilities and doctors may or may not be as good as the ones in Shands, but that could have delayed the beginning of the treatment, which we really didn't want to do. We tried to find out what we coulddo here, and when, but we couldn't reach anyone. In fact, they still haven't returned our phone calls. The good news is that this morning CHP reversed themselves and agreed to the treatment at Shands that we had already planned. CHP does want us to look for opportunities to do any testing or treatment that could be done in Tallahassee, which we are happy to do. We'll know more about what is needed after the initial consultations at Shands.
Oh yes, Jennifer is still improving, and getting excited about seeing her friends at Smith again.
Wednesday, May 21. We made it back from Massachusetts late last night. We slept in this morning, and then starting unpacking the van--it's amazing how much stuff a college student can accumulate in a dorm room. Now we're getting ready for tomorrow's trip to Gainesville.
Jennifer had some head pain the first day of the trip up, but then felt better. She really enjoyed seeing her friends again and participating in the various events and ceremonies on Saturday and Sunday. It was tiring at times, but well worth it.
Right after we arrived in Northampton late Friday afternoon we met with the Dean of the Senior Class, who told us she had arranged with most of Jennifer's professors to convert her courses to a pass/fail basis, and her work in the earlier part of the semester was enough to give her a grade of "pass"--so she won't have to write all of the end-of-semester papers to pass the courses. There are some administrative details to take care of, but she should get her degree in a few weeks.
Friday, May 23. We took Jennifer to Gainesville yesterday for a consultation with the Radiation Oncology group. They explained what they planned to do, and when and how, and how it will affect Jennifer. They also fit her for a "bite plate" which she will hold in her teeth during the radiation treatments to help keep her head immobilized, had a CAT scan to help determine how to set up the computer-controlled radiation beams in just the right places, and took some MRIs for a baseline record.
After all that we toured the Hope Lodge. This is a facility near Shands sponsored by the American Cancer Society and Winn-Dixie for people getting long-term treatment. It can accommodate 45 patients (and one care-giver for each) in two-room suites (bedroom and living room)--at no charge. There's no maid service, but they provide bed linens, towels, etc., and have six washers and dryers. There's no food service but they have a very large kitchen with pots and pans, dishes and silverware, multiple stoves and microwaves and three large food storage spaces for each patient: one for refrigerated food, one for frozen things, and one for plain storage. There are several library/TV rooms, and a computer room with three PCs on-line. They usually have space available, although not always for the first day or two. We'll know more about that on Wednesday.
As we were leaving Gainesville, we had car trouble. We got the minivan to a garage just as they were closing, and spent the night in the Days Inn next door. This morning the verdict was that we need a new transmission, which will take until Tuesday to get installed. We rented a car and finally got home this afternoon, in time for Jennifer's next medication. We hadn't taken any extra with us since we thought we'd be back last night. What a week!
Jennifer is resting up from the trip, and won't get many thank-you notes done today (if any).
Wednesday, May 28. We took Jennifer to Gainesville again yesterday for a consultation with the Medical Oncology group. They examined her, discussed their plans for the chemotherapy to accompany the radiation therapy, and gave us a prescriptions for the drug that will be used. This is a new (and astoundingly expensive) drug that is taken orally each day during the radiation treatments.
Since the drug is new and expensive, and CHP doesn't cover prescriptions outside Tallahassee, we decided to call the Walgreens near us and make sure they had it. They did, but not in the dosage prescribed. We called three different Eckerds stores and they 1) hadn't heard of it, 2) didn't have it yet, and 3) had it but, again, not in the needed dosage. Finally we talked to the pharmacy inside Shands, and they said that in fact the prescribed dosage was not one that is manufactured; druggists need to combine the sizes they do have. So we called Walgreens back. The problem then became that they didn't have enough of the right sizes and would have to order them from the wholesaler. And they needed to see the prescription and clear it with CHP before placing the order. And the order had to be placed by 6:30 yesterday afternoon, before we could be back in Tallahassee. However, we asked the Medical Oncology doctor to call the prescription in to Tallahassee, and Walgreens accepted that. It's supposed to be available this afternoon. We hope so, as Jennifer is supposed to start taking it tonight.
We picked up the Windstar at the garage in Gainesville yesterday afternoon, and the new transmission definitely works better than the old one did.
Jennifer is feeling pretty good. She still needs naps or rest periods during the day but is in good spirits. She's losing a little hair near the incision from the surgery, but that's not really a problem. She also has had a persistent rash from one of her current medications, but it's getting better.
Saturday, May 31. We all went to Monica's graduation Wednesday evening, and Jennifer enjoyed seeing her little sister graduate.
The chemotherapy drug that we had trouble tracking down wasavailable Wednesday afternoon at Walgreens. Taking it Wednesday evening was harder than finding it, as Jennifer had to get up three times during the night to throw up. However, she's now on an additional drug that keeps her nausea at manageable levels. She'll take both drugs until June 25th, along with the steroid and the anti-convulsant that she's been taking since April.
The radiation therapy at the Davis Cancer Center near Shands Hospital is going well. Jennifer gets four treatments of 20-30 seconds each, from different angles. Including the time needed to position her exactly, and to re-position the equipment each time, it takes a total of 15-20 minutes for each session. There are two sessions a day, Monday through Friday. So far the radiation hasn't fazed her, although we've been cautioned that the effects are cumulative and after a week or so she'll be feeling fatigued and may have various problems including difficulty eating, loss of appetite, and patchy (but not total) hair loss. So far so good.
|Radiation therapy setup at Davis Cancer Center (one of a half dozen similar machines).
Jennifer is holding the "bite plate" that will help keep her head motionless.
|Ready for a treatment. View from the monitor in the control room.|
Jennifer and Ursula were able to check into the American Cancer Society's Hope Lodge Thursday evening. I got permission to stay, too, for that first night. It's about a 20-minute walk to the Davis Cancer Center, and there's also a shuttle bus that runs every 20-25 minutes. The facilities are excellent. The people at Hope Lodge are mostly considerably older than Jennifer, but she can keep in touch with her friends by phone and email.
Sunday, June 8. Monica and I were glad to have Jennifer and Ursula home again this weekend, after their week in Gainesville. Jennifer is still feeling pretty good, and staying in good spirits, although she needs lots of rest and sleep. They've been walking, occasionally, from the Hope Lodge to the Cancer Center at the Medical Plaza near Shands, when the weather is good and Jennifer is up to it. They've also been doing some stretching and other light exercises, and plan to do more.
Sunday, June 15. Jennifer and Ursula were home again this weekend, after the week of treatments in Gainesville. Jennifer is still feeling pretty good, and in good spirits, although she gets tired more easily and has less of an appetite. She's also losing a little hair now, but it doesn't show. Jennifer's boyfriend Winston flew down from Bethesda (Maryland) for the weekend, and she enjoyed spending some time with him again. This time Jennifer and her mother will go back to Gainesville early tomorrow morning instead of this evening.
Jennifer's diploma arrived in the mail last week. She is now officially a Smith College graduate! She is very grateful to Dean Houser, her professors, and everyone else at Smith who helped her get through those last weeks of her final semester, and graduate.
Sunday, June 22. Jennifer and Ursula were home again for the last weekend of Jennifer's treatment. Jennifer still is feeling pretty good, and in good spirits. Her fatigue has leveled off at a manageable level, as has her appetite. She's lost more hair, from two places on the sides, but she has enough hair on top that the sides don't show. She has also developed a receding hairline in front, which combines with the bare strip from her surgery, but his morning she realized all she needs to do is part her hair more to the side instead of the middle, and now her receding hairline doesn't show either.
Only three more days!
Sunday, June 29. Jennifer and Ursula came home Wednesday evening after the last radiation/chemo session in Gainesville. Jennifer made it through the 28 days in better shape than some do. She has a little less hair than last week, but it still isn't really noticeable. She does still have a red face--a cumulative effect of the radiation is to cause a sun burn effect--but the slight tendency toward nausea is gone along with the chemo drug.
Jennifer is more cheerful than ever, now that the radiation is behind her and she no longer has to make the weekly trips to Gainesville. She and her mother do appreciate the opportunity to stay at the Hope Lodge, and it took a while Wednesday to say goodbye to the friends they made there. They also enjoyed and appreciated visits, phone calls, and gifts from a variety of old friends, in both Gainesville and Tallahassee.
Now Jennifer is concentrating on improving her health with nutritious food and regular exercise, and making plans for the fall. Anyone know of a need for a substitute/assistant/intern Latin teacher in Tallahassee?
Sunday, July 6. Jennifer is doing well, and getting stronger. She has lost a little more hair, but it still isn't really noticeable. Her face still itches but isn't quite as red. Any additional effects of the radiation treatments should finish showing up by about Thursday, which will be two weeks since the last treatment. Jennifer's been going for a brisk walk nearly every day (when reminded), and catching up with old friends and unfinished books.
Jennifer is doing so well that she plans to drive to the Washington DC area next weekend with Winston as he takes his new (to him) car from Tallahassee to Bethesda. They hope to also visit friends and Cousin Joachim in New York before Jennifer flies home again, if they can work out the travel details.
Tuesday, July 15. Jennifer arrived in Maryland late last night, following a relatively uneventful drive up from Tallahassee with Winston. She'll be there until the 25th when she and Winston visit friends in New York City. They'll return to Bethesda on the 27th, and Jennifer will fly back to Tallahassee on the 31st. She has really been looking forward to this mini-adventure.
Good news at home. Jennifer is qualifying to be a substitute teacher in the Leon School System, and is already lining up some work teaching Latin in her old high school this fall. Her major in Classical Studies at Smith, and her semester in Rome, will be very helpful with her teaching. Remembering what it was like to be a student can't hurt, either.
Sunday, July 20. Jennifer is still in Maryland, and having a great time. She and Winston will leave for New York City later this week, and return to Bethesda on about the 27th. Jennifer will fly back to Tallahassee on the 31st.
Sunday, July 27. Jennifer is in New York City with Winston, and having a great time with friends. She and Winston will return to Bethesda on about the 27th, and Jennifer will fly back to Tallahassee on the 31st.
Sunday, August 3. Jennifer got back safely Thursday from Washington. She and Winston had a great time visiting with friends in Washington, and got to be a tourist when Winston had to work. They saw more friends in New York City last weekend, and got to stay with her cousin Joachim.
Friday Jennifer had another MRI, here in Tallahassee. It took them a while to find a vein to inject the contrast dye. Not her favorite activity, but least she's not claustrophobic.
Sunday, August 10. Well, so far so good. Jennifer's MRI showed some "hot spots" that could be new tumor growth but are probably just effects of the radiation. They say that both look the same in the MRI. We'll know for sure when they compare these MRIs with the next set in late October.
Jennifer started on the monthly chemo regimen Wednesday evening, as planned. For five days she gets the same chemo drug she had along with the radiation, but a larger dose, followed by 26 days without it. She's tolerating the drug pretty well, although she has a little nausea (mostly controlled by another medicine) and she has gotten increasingly tired each of the five days so far. But after tomorrow that should get better.
Sunday, August 17. Jennifer got through the first 5-day chemo regimen without too much trouble. By the end of the five days she was extremely tired, but she perked up considerably after the five days were over. She still gets tired now and then, but she's still usually in good spirits.
My next update here will be in two weeks; I'll be in North Carolina later this week getting Monica registered and moved into her dorm on the UNC campus.
Sunday, August 31. Jennifer is feeling pretty good now. When she visited her Tallahassee oncologist Wednesday her blood test showed that her cell counts were high enough to ramp her chemo up to the full dosage for the next round. She also was glad to get the okay to reduce her steroid dosage further. She still gets a little tired, but she's still usually in good spirits and is going for brisk neighborhood walks regularly.
Saturday, September 6. Jennifer is feeling good and enjoying her trip to Lake Tahoe for the wedding of her friend Yuh-Mei. She returns to Tallahassee tomorrow (Sunday) night.
Sunday, September 14. Jennifer got home from her trip to Tahoe with no problems. She got through the chemo this past week in good shape, and hasn't seemed to feel as tired this time. She also completed her substitute teaching course, so she is qualified to substitute now.
Sunday, September 21. Jennifer is feeling fine, and her hair is growing back in the areas affected by the radiation. The paperwork isn't complete for her to qualify as a substitute teacher, but she plans to help out a teacher who has to be out one day this week--even if she doesn't get paid for it. Jennifer has also joined the Tallahassee Community Chorus and goes to their practices each Monday evening.
Monday, September 29. Jennifer is in the Washington DC area this week visiting Winston. Saturday we all enjoyed the wedding of her cousin Elisabeth to Dan in Orlando (pictures available soon).
Monday, October 6. Jennifer got back from Washington DC yesterday, with no problems. She enjoyed her visit with Winston, and also met a friend from Smith and did some shopping. She's at the weekly practice of the Tallahassee Community Chorus now. Her Tallahassee oncologist told her this afternoon she's tolerating the chemo drug very well, and she can continue with it.
Sunday, October 12. Jennifer did a couple of days of substitute teaching (Latin and American History) at her old high school this week, as well as some tutoring for a local educational assistance company. She enjoyed it, especially when the students cooperated. She is in the middle of her five days of chemo this month, and again it is going reasonably well.
Sunday, October 19. More substitute teaching and tutoring last week. Jennifer came with us to the FSU Cares 5K race at FSU yesterday, and was inspired to consider signing up for the 1-mile fun run at the Women's Distance Festival in Indianhead Acres on Nov. 1.
Sunday, October 26. Jennifer has started regular substitute teaching at Leon High School, while the Latin teacher is on maternity leave. It's a challenge, but she's putting a lot of work into class preparation and everything should go well. She has found while substituting for other teachers a day at a time that controlling the classroom can be as much of a challenge as knowing what to teach, but the Latin students seem a little more interested in learning something.
Sunday, November 2. The news from Jennifer's latest examination at Shands was not what we had hoped for. The latest MRI showed some new tumor growth at the edge of the place her original tumor was removed. The Shands Tumor Board (a group of specialists in cancer surgery, radiation, and chemotherapy) met Wednesday and considered three options: Additional surgery, more radiation, or a different chemotherapy regimen. They decided to go with the radiation, followed by some new chemotherapy. This radiation treatment will be different from the series she got before. The stereotactic radiation, as it's called, will be more energetic, more tightly focused, and only a one-time treatment.
Sunday, November 9. Jennifer went back to Shands Hospital in Gainesville this week for an additional radiation treatment. It went well, other than the pain of having a metal framework attached (temporarily) to her skull. This framework allowed them to target the radiation very precisely at the location of the new tumor growth. She was home by Tuesday evening, and back at Leon High School teaching her Latin classes Wednesday morning.
Sunday, November 16. Nothing new. Jennifer is working hard at being a good Latin teacher.
Sunday, November 23. Jennifer has a cold, but still manages to function well.
Sunday, November 30. We all had a good weekend. Jennifer enjoyed seeing Winston (here from Bethesda) and Monica (here from Chapel Hill).
Sunday, December 7. Jennifer gave us a bit of a scare Wednesday. She forgot to take her routine medication Tuesday night, and had a seizure Wednesday evening. She's fine now, and promises not to forget again. She went to the FSU Prism concert Friday evening, and to Market Days on Saturday, two good tests of strength and endurance.
Sunday, December 14. Well, we had an up-and-down week.
Monday: Tallahassee Diagnostics Imaging (TDI) lost Jennifer's December MRI films along with the radiologist's report comparing them with the ones from October.
Tuesday: TDI produced a CD-ROM with the MRI images for us to take to Gainesville, but no radiologist's report. The Gainesville doctor decided (based on his own interpretation of the MRI images) that Jennifer didn't need any additional chemotherapy until the next consultation (in February). He did caution us that he still wanted to see the radiologist's report.
Wednesday: TDI produced copies of the MRI films and the radiologist's report. That report noted some relatively subtle differences between the October and December MRIs, and called the differences "worrisome." I scanned the report and emailed it to Gainesville.
Thursday: Based on the radiologist's report, the Gainesville doctor decided Jennifer should start some additional chemotherapy this month, after all.
Friday: Jennifer made preliminary plans to start the chemo next week, pending availability of the drugs. The regimen is more complicated for this drug combination than with the single chemo drug she was on before, and the schedule is not yet final.
Sunday, December 21. This has been a hectic week, but is settling down now. Jennifer has her new chemo drugs (finally; Walgreens couldn't get them but Eastside Pharmacy could), and will start the new cycle next week. Neither this nor a last-minute fender-bender could keep her from getting to the airport in time Friday to catch a plane to Houston. There she'll spend Christmas week with Winston, his mother, and his brothers. Jennifer taught her last class for the Latin teacher who has been out on maternity leave, but still has some tests to grade to finish up before January 6.
Saturday, December 27. Jennifer got back from Houston last night, tired and a little congested, but happy. While in Houston she enjoyed meeting a variety of Winston's relatives. The first stage of the current chemo cycle (a pill on Monday) wasn't as much fun, but she got past it.