Wednesday, May 6, 2015
My last chemo (of this set of treatments at least) was a week ago last Monday. Hopefully last transfusion a week ago Tuesday. CT scan and labs were Monday this week. Today I got confirmation that both the labs and the CT were good. I dont have to return for more lab tests until Monday May 18. Currently I am scheduled to continue on medical leave through MAy. I outlined an optimistic schedule of daily chores, exercise and so on designed to get me back on a schedule compatible with work (arising before 8 AM, being able to keep going all day). So far it appears to have been a bit too ambitious. I am managing to rise before 9 AM. But this first week off chemo I have done no intentional exercise. I managed to do a pretty full day MOnday, driving to Gainesville for the CT scan and laboratory tests, then back to Atlanta and finishing out the day with several tasks. I managed to push myself to do a series of chores on Tuesday, but not nearly as ambitious as originally planned and with more and longer rests (and naps) in between. I told myself by taking it easier I would be revved up again for tasks today. But today I have pretty much napped in front of the TV with the exception of taking myself out for brunch (easier than cooking) and gathering a few supplies that need to go up to the mountain house before the landscaping crew arrives this weekend to complete the hardscaping and planting and other work. I am telling myself that if I rest up today I will be in shape to drive up to the mountains and drop that stuff off tomorrow ... or maybe Friday. Hopefully I am right. But I have stopped thinking that I scheduled all of may for recovery but will probably go back to work earlier. There is little point going back to work until I can actually manage to do work most of the working day, most days of the week. Well if it is true that "A man's reach should exceed his grasp or what's a heaven for?", I am doing a good job with my recovery plan. I have delayed the plan to start intentional exercise until next week and plan to keep pushing to try to accomplish at least a few tasks a day, and at least 1 or more full days of effort a week. With a slow uphill course. But as always plans must adjust to reality. Still with good outcome on the labs and the CT, I can't complain. I will just keep pushing to slowly increase stamina and productivity. For now the plan to go back to work June 1 seems reasonable. The expectation that I would actually start back sooner than that seems less realistic. Time will tell. Louisa
Saturday, April 11, 2015
Thursday night I was called because my lab tests that day had been low - very very low. With a hemoglobin just over 5 (normally anything 8 or lower gets transfused) i was told to return to Gainesville at 8:45 Friday morning for type and cross (blood testing) and transfusion of Red blood cells. It took all day but 2 units of transfusion later my blood pressure was higher (in this case, a good thing) and I felt better than I had for weeks. Following a trip to Rhode Island for a wedding March 21 I came down with a virus and had two weeks of upper respiratory tract infection and diarrhea. I got pretty dehydrated, which probably artificially elevated my blood counts at weekly testing. I had had trouble standing up without getting dizzy for most of that time. Things improved when i was again able to eat real meals, and even more as I slowly rehydrated. Wednesday I was diagnosed with a urinary tract infection and started on antibiotics. Then Friday i got transfused. Now I feel better than I have for weeks. None the less I spent most of the day dozing in PJs in front of the TV. Tomorrow I will try to be more active. Monday I start the last 3 week cycle of chemo - Monday is the day i get two drugs (carboplatin and taxol). AFter that I will get taxol alone for the next 2 mondays - assuming i do not have blood counts that are low enough to require delaying a week or more of chemo, I will finish my chemo the beginning of May. I am eager to get to that point and then begin improving again. Louisa
Thursday, April 2, 2015
March 21, one week into cycle 5, I went to Rhode Island to a wedding. Wonderful event and would not have missed it for the world. But somewhere on the way up, back or in between I seemed to have picked up a virus which left me in bed febrile and dehydrating for most of 3 days last week followed by GI complications for most of the rest of the week. But as of today I can finally seem to operate at normal body temperature, keep enough liquids down to no longer get dizzy whenever I stand up, and make it through the day without Niquil. Oh and did I mention I am approximatly 10 pounds lighter? (every cloud has a silver lining...) So if I have not been terribly responsive, forgive me. I seem to be recovering now but still a little weak and slow and definitely going to take more seriously avoiding crowds for the rest of my chemo - which barring the need for delays due to low blood counts or other reasons, should continue for exactly 4 more weeks. Four more weeks - the end is in sight! I have graduated to full time medical leave a little sooner than I had planned thanks to the assistance of my little viral friend. But it was coming anyway. Balsam, who often seems to find used kleenex charming things to pull out of the garbage and chew upon, is behaving in a more civilized manner these days. Which maybe means even he has not enjoyed this virus. The singing hound dog did lift his head when the clock radio went off at 6 AM and begin crooning along with whatever was playing. I failed to fully appreciate his musical contributions since I was still in bed trying to sleep, but he clearly does have moments when there is no question that he is attempting to croon along with the music. Like his mother, he has a tendency to start on pitch but then go flat or otherwise slide off key. Sigh. Well, nobody is perfect. 5.66 cycles down, 4 weeks to go.
Wednesday, March 25, 2015
I had the first week treatment of the 5th cycle out of 6 last Monday. Today I am home from work with a cold that I picked up traveling to my niece's wedding in Rhode Island last week end. Well worth the inconvenience of the cold! Only 5 more weeks of chemotherapy to go. Looking forward to finishing and moving into recovery. Balsam also came home from boarding with what appears to be a doggie cold, so we are both drooping about the house in our PJs today. Ok well truthfully, Balsam is wearing his usual collar, I am the one in PJs drinking mint tea and watching TV.
Thursday, March 19, 2015
Monday, March 16, 2015
Last chemo of cycle 4 today. Taxol only so it went well. 2 3-week cycles left to go. But my Hbg was 8.8 last Thursday - 2 full ppoints lower than a week earlier and 0.8 points above the point that usually mandates a transfusion. No wonder I am exhausted and sleeping a lot. Getting labs early this week on Wed afternoon so if it is low enough to merit transfusion I can get it arranged Thursday night before i depart Friday morning for my niece's wedding IN Rhode Island. a little more oxygen carrying capacity might improve my stamina for the wedding. other wise things are well. I could not get going Friday and took a sick day from work. This is close to the time when I had to begin dropping work days off last time (currently trying to do 3 days in the office each week missing only the days I have medical appointments, but dropped Friday as well last week and spent the whole day napping. I hope a transfusion will reverse that. But I know the time when I have to drop to 2 days in the office, then 1 day in the office per week and eventually just go on full time sick leave is approaching. But that also means the end of this round of treatment is also approaching, so the glass if half full.
Sunday, March 8, 2015
Last Monday I had my first chemo since January - with Week 1 of cycle 4 starting with carboplatin and taxol. I had forgotten how it felt to take poison weekly - radiation is so much easier. But the nurses ran the chemo really slowly and i did not have a reaction as I had before. As long as I take my antinausea meds regularly things go smoothly on that account. I can tell the time is coming when I will have to start dropping days off work starting with Fridays (I am getting chemo on Mondays and labs and follow up on Thursdays but in the office the other 3 days) but for now I can still manage 3 days in the office and am still getting some things done. So all is good. I am trying to fend off the point where I give up and stay home as long as possible. Tomorrow is week 2 of cycle 4- i will get Taxol only. That will be an easier week than the first one out of three when Taxol is accompanied by Carboplatin. But I think it all may be a bit easier than the last time with Avastin. Or maybe it is just that I know what to expect and manage my life better.
Thursday, February 19, 2015
Today I completed the 18th of 20 radiation sessions. The next two are tomorrow (friday) and Monday at 4:30PM. Radiation has gone well - I had to depart work daily at 3 to get to Gainesville by 4:30 (the trip takes longer when you are going with rush hour). Some days when there was an accident or a pile up or a few construction issues on the road that was barely time enough. The last week has been interesting. We have had remarkable low temps for GA in mid February combined with rain on the first day of the cold snap. Fortunately GA state learned lessons from last year's major national news making traffic snafu so they began treating the roads the day before the freezing rain. Two days ago the drive to Gainesville was a bit concerning given it was grey and raining and the rain was freezing on the windshield, signs, trees and so on about as fast as it fell. But the roads remained clear and the traffic was much decreased (lots of places closed) so i got there and back with out problems. The past 2 days driving to and from Gainesville has been sort of like driving through a fairy land with all the trees and bushes coated with crystals that capture the sun and glimmer beautifully. Sort of like driving through rows of Christmas trees only decorated with crystals. Except for the cracked trunks and broken branches where the weight of the ice proved too much for the trees. But ignoring that... It is predicted to get even colder at night and tomorrow - so I am glad tomorrow is my last commute this week. Monday will be the last radiation treatment. I had blood drawn Wednesday this week and will do so again next week - probably Thursday. The outcome of those two blood draws as I understand it will determine when I begin chemo again. I also understand that I will have another CT scan after I complete radiation therapy, presumably looking for changes between when I started and now. Meanwhile last week I had my visit with the Urologist - who tells me that he sees these ureteral obstructions all the time in chemo patients, they cannot be cured by surgical intervention as my surgeon thought he had fixed it during surgery, they likely will get worse with chemo and almost certainly will get worse with radiation and wanted to know why i was not referred to a Urologist earlier. What can I say? I am scheduled to get a stent placed next Wednesday. It will be an outpatient proceedure but performed under general anesthesia. So since I can't drive home (or anywhere for 24 hours thereafter) I will have to recruit drivers. Or maybe I will take a taxi in early and just find someone to pick me up and bring me home afterward. That is the next problem to solve. I am hoping my cells counts are good on the blood draws coming up and I can start back on chemo a week from Monday. If so, I will complete the first of the remaining 3 3-week cycles just in time to head to Rhode Island for niece Louisa's wedding in late March. I decided to bite the bullet and RSVP'd yes, reserved a hotel room and made a plane reservation. But just in case I also purchased the travel insurance so i can get a partial refund if I have to back out at the last minute. So 2 more radiation sessions, another blood draw, a stent placement, probably a CT, and then back to chemo therapy to finish the course starting hopefully within the next 2 weeks.
Sunday, February 8, 2015
Friday I completed #9 out of 20 radiation therapy sessions, making me nearly half way through. So far it is going OK. The 4:30 time spot requires me to leave work by 3 since I have to travel both directions with rush hour traffic. Some days there are pile ups on the interstate and I worry that I left too late. This is why I had requested a morning time slot when I met with the nurse, with the doctor, and again when I met with the techinition. But as seems to be the case with this practice, it made no difference with the scheduling. I had to schedule a urology appointment in Marietta before I knew the time for my appointments with radiation therapy, so I asked for the last time slot of the day since I assumed my Gainesville Radiation appointments would be in the morning. Unfortunately that turned out to directly conflict with my radiation therapy appointments. So when I arrived for the first appointment I asked to reschedule on that day only (which would be this Friday). I was told they could not provide such special treatment that it would be unfair to the other patients. Instead I had to wait until 2 days prior to that appointment to see if it was possible to switch to a morning spot on that day. Fortunatly my primary care doc got Tricare approval for a different Urologist associated with Emory and located in Atlanta and I was able to get that appointment for the first appointment of the day at 8 AM so it should be possible to also make the radiation therapy appointment that same day in Gainesville GA. My experience with this practice leaves me wondering how they could possibly think they are giving me special treatment to the extent that they are disadvantaging others. Fortunately during my daily appointments I just have to walk in, wait often for a very long time but then walk back and position myself on the machine, remove appropriate clothing and lie still for about 20 minutes. The only people I interact with are the technitians and with them only during the time they adjust my position on the machine to make sure things are lined up exactly. So far things are going smoothly. The only side effect has been mild colitis/ileitis leading to occasional rather urgent diarrhea. This tends to happen toward the end of the week and weekend but the 2 days off seem to give my gut recovery time. Just in case I acquired a supply of depends... makes me feel very old. BUt i assume this will get worse week by week but resolve once the treatment is over. I also can feel a bit of tenderness in the area where the radiation is directed, again most noticable on Friday and Saturday. That is not so uncomfortable (at least so far) as to induce use of pain meds, and is sort of comforting in that it assures me that something seems to be having some sort of effect. Hopfully the effect that we want. The fatigue is not too bad. I am able to work daily and am making progress on a book chapter I am supposed to produce by April 1. I do tend to lose concentrating ability about 2:30 every day so I save at least half an hour's worth of little tasks to address in the last half hour before I depart for Gainesville. And I tend to spend my Saturday's napping most of the day in front of the TV, but I did that when I was getting chemo, too, and my brain was less clear. So... Like the colitis, I have been warned this may get worse as the month goes on but so far so good. 9 session down, 11 to go. Then back to the last half of chemo.
Tuesday, January 27, 2015
Just finished my first radiation treatment today. I was called last week and told my first treatment would be at 4:30 pm today. I asked about subsequent treatments, and was told I would be given more information after my first treatment today. I explained that in my job I was expected to make arrangements and get leave slips signed in advance rather than just not showing up when it was inconvenient. As a result if they wanted me to return tomorrow I would need to be aware of that appointment in advance of close of business today. After what seemed like a stunned pause, I given 4:30 pm appointments for the rest of this week (Today Tuesday through Friday) and told I would get the remainder of the schedule today. Between then and now I had to schedule a Urologist appointment and was offered 4:30 PM on Friday 3/6 as the first available appointment. I took it, as I needed to find out whether I need a stent and in addition it seemed a safe bet that I would not be getting appointments after this week at 4:30 pm. But today when I showed up I was given a calendar by a cute little nurse (or technician or...) that showed 4:30 pm appointments every weekend starting today and ending the last Monday of February - 20 in all. Since the radiation oncologists had been talking about 6 or more weeks of treatment, I asked if this calendar represented the entirety of the planned treatment schedule or merely the part that had been scheduled to date. She told me she did not know. I asked who did know and when I could find out. She told me usually on Wednesdays after treatment I would have opportunity to meet with the doc and that I could ask them. Let me point out that this is the third conversation I have had with someone from this practice over the past week trying to get clarity about what my treatment schedule will be. She seemed to think it odd that I felt I should know now how long this treatment will continue. I find it bizarre that I am having so much trouble getting clarity on the schedule and even now it is now clear. And that I need to wait for another appointment and again the convenience of the doc before I can get an answer to that very reasonable question. Then I explained that I would need to reschedule the one for 4:30 next Friday 3/6 because I have a Urology appointment then. She seemed startled that I had anything interfering with the schedule I was just provided. I explained that since I had discussed at least 3 times that it would be best if I could come in the AM, I thought that a PM Uroloigst appointment was least likely to interfere with the schedule for radiation when I finally received it. I would have been glad to schedule around their appointments, but I had been unable to get any info on what that would be. I asked if I could reschedule that specific appointment today. It was explained to me that I can't do that until maybe Wednesday of next week. My request that I be able to schedule now so I could plan resulted in it being explained to me that I cannot receive so much very special treatment that it disadvantages other patients. I cannot describe how cynical I felt, but I suspect it showed on my face. I explained that I would have been happy to schedule the Urology appointment around the radiation therapy appointments but I was unable to get any information from this practice regarding when my radiation appointments would be, so I was forced to go ahead and schedule the Urology appointment. I also stated that it was not my impression that I had been getting a lot of special treatment. In fact it was my impression that this practice was more indifferent to the needs of patients than any other practice with which I had been associated as either a patient or a physician. She seemed to think I was way out of line, but asked specifically what time in the afternoon my Urology appointment was for that Friday. I had not brought it with me so was uncertain of my memory but I am pretty sure (can't check till i get back to my office tomorrow) that it is an exact conflict at 4:30. I did not tell her that, however. I told her that it did not matter what time it was since if we tried to schedule this appointment any time that afternoon I would have to complete the appt, travel back to Atlanta and from there up to Marietta GA in time for the next appointment. It is not feasible to plan this all in one afternoon. I need an appointment in Gainesville in the morning on that particular day. I have to wait until next Wednesday to see what slots are leftover to be able to schedule anything. I continue to be very unimpressed with this practice. They seem oblivious to patient needs. First treatment went smoothly I guess, although a bit uncomfortable. I now possess 3 tattos. And since the senior partner in the practice did come into the treatment room afterward to speak to me I took the opportunity to ask him if the schedule of 20 appointments I was given was the entirety of the treatment or only the part of the treatment they had scheduled to date. He checked and confirmed it was the entireity of the treatment - so it was possible and apparently even easy to confirm that. I did not bother trying to reschedule the appt for next Friday today. I will wait another week and just assume I will have to take that entire day off work. the good news is, now that I know my radiation treatments will routinely occur at 4:30 for the next month, i can plan around not needing to leave work until 3:30 or given rush hour commuter traffic, maybe 3 pm. That is helpful. AT last, something helpful.