The Up:
Lindsay and I had an absolutely delightful weekend at Canyon Ranch. We watched a couple of movies together plus the Oscars, ate some delicious and healthy food, had a couple of really restorative treatments, and mostly just enjoyed each other's company. I have to specifically describe something I did called a "Remineralizing Bliss." This all occurs in a massage room on a heated table with the lights low and soft new age music playing. It started with an exfoliating scrub all over. This was washed off with warm towels followed by a dry scrub. Then I got covered with lavender oil and wrapped in warm towels. While I was wrapped she did foot and scalp massages. The oil was wiped off with warm towels and then she did a full body massage with remineralizing lotion. I told her that, if it did nothing else for me, she gave me 100 minutes of feeling physically well (no pain, no nausea) and completely at peace that I could go back to during the many times that are not so comfortable.
I've been sleeping much better in the last week or so allowing me to start the day with more pep and optimism.
The Down:
I continued with daily fevers through Monday. I was able to use my medications to time things so that I usually only had 2 or 3 hours in the afternoon when I felt the need to be in bed under covers and felt well enough for dinner by the time that rolled around. I took a dose of Ibuprofen at 7 pm on Tuesday and by then had had no temp greater than 98.6 for 24 hours so didn't take any more and, brilliant as I can sometimes be, didn't realize until I was really miserable at work at about 3 pm on Wednesday that I should check my temperature, at which point it was 102.1. So I'm back on regularly scheduled fever reducers. The right sided abdominal pain hasn't been too much of a bother.
Along with the fever and abdominal pain I've been having problems with a poor appetite, filling up really quickly and some epigastric fullness and discomfort. By the first of the year I had gained about 13 pounds since starting chemo. Before we left for Canyon Ranch I had lost 4 of those since the first of the year. This morning the scale tells me I have lost 5 more in the last week. Not so good, since whatever the reason for these symptoms (tumor necrosis - good, Alimta side effects - not so good, tumor progression - really bad) I know that when a real weight loss spiral begins it can be very difficult to stop. So I asked Robert to pick up some Ensure for me and called the doctor. He thinks this is all Alimta side effects (boo!) and has been leaning toward stopping the Alimta and switching to something else since LAST cycle's fevers. We agreed that, rather than waiting until March 17 for the next scan, we'll get one Tuesday morning BEFORE the next Alimta and make our decision about what to do when we see the results (that day, so no delay in Alimta if the scan is good). So -- significant reduction in tumor size we go ahead with Alimta and keep working on symptom management. No significant change or progression we quit Alimta and figure out what's next.
I'm also finding that I'm having more and more trouble dealing with the typical difficult worker's compensation patient - the bread and butter of my specialty. I have so little patience for symptom magnifiers and people who are trying to find any way not to work and have someone else pay them. I think I'm going to have to start some meditation or something because it's starting to take a toll on me emotionally. Any suggestions welcome.
I think that's about it. Hannah and I are off for Rochester tomorrow. Her team is seeded #1 in her age division! Monday I work clinically, Tuesday I start with the CT scan, then get my thumb injected, then see the oncologist. I'm scheduled to work clinically Wednesday and Thursday, off Friday, and then work clinically Saturday and Sunday. I'll update after I see the oncologist on Tuesday.
Keep the good energy headed my way.
Lisa
Thursday, February 26, 2009
Thursday, February 19, 2009
What's Up With the Doc 41? - Sounds Bad, Probably Really Good
In the "ask and ye shall be given" part of my life I developed right sided upper abdominal pain in the middle of the day yesterday and by the time I got home had fever which eventually got to 102. While this sounds bad and, indeed, laid me very low, it is, in fact, a gift and something to cheer me up a lot. Yesterday was day 9 in my Alimta cycle, exactly the same day that this happened last cycle. I have no symptoms to suggest that I have an infection of any sort. I think this is tumor necrosis. My oncologist was not on call last night and I didn't want to talk to the on call doc and get sent to the ER so I called my Albuquerque oncologist friend who agrees with me 100%. His sign off was, "Well, I'm sorry you're having to deal with this but it's great news!" So I'm alternating Ibuprofen and Acetaminophen every four hours and will call my onc this morning. I'll let him take cultures and counts but no antibiotics and no hospital. Hopefully the meds will keep things under control enough to let me still go to Canyon Ranch, but all I keep thinking is "Die, you fuckers, die."
Wednesday, February 18, 2009
What's Up With the Doc 40? - Cranky Is Me
The volleyball weekend was dandy. Weather in DC was sunny and cool (Saturday) to cold (Monday). Hannah's team didn't do very well but my cousin's daughter's team took third in the 18 and under division and it was fun watching her play for the first time. I had a great brunch with friends on Saturday and then another one on Sunday with my stepsisters, their SOs, 5 kids between them and soon to be in-laws of one of the stepsisters.
I walked a fair amount all three days and could barely move by the time we got back to the hotel Saturday night so blew off the team dinner and went to bed. Sunday and Monday were a bit better for stamina. I've been having a fair amount of pelvic/hip pain which is probably from the Neulasta and the thumb that I had injected a little over a year ago is very uncomfortable again. The shoulder injection I had 10 days ago seems to slowly be working.
Mostly I am really cranky. I think I am angry about the chronic disease part of this whole deal, which makes me angry at myself since the alternative is dying. When I was first diagnosed I had to adjust to the concept that I might die pretty quickly and even though I understood, in theory, this whole chronic disease/disease control concept, I didn't really know what it meant. I'm tired of feeling borderline crappy all the time. I'm pissed that this is what the rest of my life is going to be like, that I really don't ever get the real me back. It's better than being dead, but it's not as good as not having this cancer.
I WILL get over this eventually. I don't do well with chronic low grade anger. I have to resolve what I'm feeling into something that is more supportive of getting the most out of whatever time I have left - especially if it's a lot of time. So I will move on from this to something more productive.
From the how I'm doing standpoint everything looks good. All my counts are good, no fever, mild nausea, moderate fatigue. Next visit to the doctor should be March 3rd for the next Alimta cycle then a scan on March 17th. This weekend Lindsay and I head for Canyon Ranch where we definitely plan to stay on the spa/pampering track rather than the fitness/wellness track. We get to watch the Oscars together Sunday night which should be a hoot and something we haven't done for years. The next weekend I'm off to Rochester for more volleyball.
For all of you looking for targets for your thoughts and prayers I could use some chill out and cheer up vibes this week.
Lisa
I walked a fair amount all three days and could barely move by the time we got back to the hotel Saturday night so blew off the team dinner and went to bed. Sunday and Monday were a bit better for stamina. I've been having a fair amount of pelvic/hip pain which is probably from the Neulasta and the thumb that I had injected a little over a year ago is very uncomfortable again. The shoulder injection I had 10 days ago seems to slowly be working.
Mostly I am really cranky. I think I am angry about the chronic disease part of this whole deal, which makes me angry at myself since the alternative is dying. When I was first diagnosed I had to adjust to the concept that I might die pretty quickly and even though I understood, in theory, this whole chronic disease/disease control concept, I didn't really know what it meant. I'm tired of feeling borderline crappy all the time. I'm pissed that this is what the rest of my life is going to be like, that I really don't ever get the real me back. It's better than being dead, but it's not as good as not having this cancer.
I WILL get over this eventually. I don't do well with chronic low grade anger. I have to resolve what I'm feeling into something that is more supportive of getting the most out of whatever time I have left - especially if it's a lot of time. So I will move on from this to something more productive.
From the how I'm doing standpoint everything looks good. All my counts are good, no fever, mild nausea, moderate fatigue. Next visit to the doctor should be March 3rd for the next Alimta cycle then a scan on March 17th. This weekend Lindsay and I head for Canyon Ranch where we definitely plan to stay on the spa/pampering track rather than the fitness/wellness track. We get to watch the Oscars together Sunday night which should be a hoot and something we haven't done for years. The next weekend I'm off to Rochester for more volleyball.
For all of you looking for targets for your thoughts and prayers I could use some chill out and cheer up vibes this week.
Lisa
Thursday, February 12, 2009
What's Up With the Doc 39? - Yet Another First
Tuesday was my third cycle of Alimta. Labs drawn before chemo showed that my anemia is getting worse, not unexpected with the Alimta. There is evidence that survival is actually shortened for people with lung cancer who take red cell stimulators like Procrit, so yesterday I had my first ever blood transfusion. It seems as though circumstances are conspiring to make sure I get to experience as many therapeutic and diagnostic interventions as can possibly be crammed into my life. Maybe that’s karma for all the tests and treatments I’ve “inflicted” on my patients over the years. As these experiences go, this one wasn’t so bad. I worked on a cryptic crossword until the Benadryl made me drowsy enough to nap with the iPod. The chair was comfortable, there was a warm blanket and the staff were both nice and competent, a great combination. I received two units of red cells without a hitch.
Today people keep asking me how I’m feeling and I can only respond that I think I’m OK. Shoulder injection on Monday, chemo and vitamin B12 on Tuesday, blood transfusion and Neulasta on Wednesday. I’m surprised my body even knows which end is up. I still have my aches and pains for which I take Ibuprofen and feel a little better. The shoulder is better today than yesterday. I’m slightly queasy but not really nauseated. My energy level is pretty good. No Neulasta-related bone pain that I can identify. So pretty good, all in all.
My oncologist is concerned that the CT angiogram I had on January 30th shows progression and so we tussled a little on Tuesday about whether he was even going to give me this cycle of Alimta. We finally agreed to do two more cycles and scan after the 4th. I know it’s not any fun having to argue with me all the time, but I’m worried that we’re in different places about treatment objectives. He’ll throw anything at this cancer that might possibly control it. I’m not willing to sacrifice quality of life for what everything tells me is little chance of significant prolongation of life. But a friend reminded me that I really won’t know how any treatment will affect my quality of life until I try it. So for now we have an agreement that gets me through to March 17th on the current treatment. If that scan shows progression I’ll give whatever he wants to do a try, as long as he lets me push it off for a week so I can go to my daughter’s last volleyball tournament without worrying about feeling awful.
So really I am doing just fine today. Another first under my belt, a plan in place and I’m feeling OK. Here’s hoping this holds through my volleyball weekend in DC.
Today people keep asking me how I’m feeling and I can only respond that I think I’m OK. Shoulder injection on Monday, chemo and vitamin B12 on Tuesday, blood transfusion and Neulasta on Wednesday. I’m surprised my body even knows which end is up. I still have my aches and pains for which I take Ibuprofen and feel a little better. The shoulder is better today than yesterday. I’m slightly queasy but not really nauseated. My energy level is pretty good. No Neulasta-related bone pain that I can identify. So pretty good, all in all.
My oncologist is concerned that the CT angiogram I had on January 30th shows progression and so we tussled a little on Tuesday about whether he was even going to give me this cycle of Alimta. We finally agreed to do two more cycles and scan after the 4th. I know it’s not any fun having to argue with me all the time, but I’m worried that we’re in different places about treatment objectives. He’ll throw anything at this cancer that might possibly control it. I’m not willing to sacrifice quality of life for what everything tells me is little chance of significant prolongation of life. But a friend reminded me that I really won’t know how any treatment will affect my quality of life until I try it. So for now we have an agreement that gets me through to March 17th on the current treatment. If that scan shows progression I’ll give whatever he wants to do a try, as long as he lets me push it off for a week so I can go to my daughter’s last volleyball tournament without worrying about feeling awful.
So really I am doing just fine today. Another first under my belt, a plan in place and I’m feeling OK. Here’s hoping this holds through my volleyball weekend in DC.
Friday, February 6, 2009
What's Up With the Doc 38? - Now That's What I Call Really Sick
Now that whatever lovely 8 day viral infection invaded my body is fading into the sunset, I am starting to appreciate just how sick I was. Sicker than I have yet been with this cancer, that's for sure. Highest temperature in the last two days has been 100 even, so I think it's done and on the way out. My cough isn't too bad today and my appetite has definitely picked up. I'm still as weak as a kitten, but I'm sure some of that will come back as I recover from this illness and some of it won't, given the anemia that Alimta is causing. At any rate, I feel something resembling human again and it is a huge relief.
Hannah has also been fighting what looks like the same bug. She made an abortive attempt at school yesterday, like my abortive attempt at work on Tuesday. She made it for the entire day today and hasn't had any fever, so hopefully she's on the mend as well.
A professional acquaintance of mine was recently diagnosed with yet another awful prognosis cancer and in our brief email conversations about adjusting to her new worldview I was taken back to those awful first days of uncertainty and despair. While the uncertainty persists, it's longer range than it was before and I can live with it. The despair is not an issue as I inch closer and closer to both my anniversary of diagnosis and the mean survival point of my first line chemotherapy regimen. I'm still here! I'm still living and enjoying life! That one thing that I wished for so much when I was first diagnosed I have been given - time. Time to get affairs in order. Time to tell people how much I love them. Time to attend concerts and sporting events. Time to go to Alaska.
So since things are pretty stable for me right now, please spare some of those thoughts, prayers, spells, incantations, etc. that you have so generously sent my way these past months for my colleague as she navigates these terrifying early days.
As part of my workup for this fever and cough I had a CT angiogram of my chest last week that showed most of my known metastatic disease. My last scan was December 3 and I went almost 4 weeks with no systemic treatment after that before starting the Alimta. There's been no change in the lung lesion (no visible solid tumor), the liver lesion is significantly smaller (3.6 cm down from 5.0 cm), the right adrenal lesion is slightly larger (4.1 cm up from 3.9 cm), the lymph node under the diaphragm is slightly larger (2.1 cm up from 1.9 cm) and the thoracic spine lesion is unchanged. Apparently there is some question about new small nodules in both lower lobes of my lungs. But to my read, this is stable disease and plenty of information to warrant continuing the Alimta. Radiologists at both Yale and my hospital have discs of everything and will be weighing in with their professional opinions, but I don't think it will change anything. No reason for a scan in February so it will probably be St. Patrick's Day (after my anniversary!) for the next scan. Between now and then Hannah and I will be in DC for volleyball over President's Day weekend, Lindsay and I will spend the following weekend at Canyon Ranch for rest, relaxation, pampering and some real mother-daughter bonding time, and then two more volleyball weekends - Rochester at the end of February and Schenectady mid-March. By the time I have the next scan I will only have one more volleyball tournament on the schedule!
I'm off today and working the weekend. It's supposed to warm up to 50 here on Sunday, which will be a very welcome change. Next Alimta on Tuesday, Neulasta Wednesday and on we go. I wish Phil hadn't seen his shadow, but I know spring will get here eventually. Everyone stay safe and warm and remember - pitchers and catchers report on Valentine's Day!
Lisa
Hannah has also been fighting what looks like the same bug. She made an abortive attempt at school yesterday, like my abortive attempt at work on Tuesday. She made it for the entire day today and hasn't had any fever, so hopefully she's on the mend as well.
A professional acquaintance of mine was recently diagnosed with yet another awful prognosis cancer and in our brief email conversations about adjusting to her new worldview I was taken back to those awful first days of uncertainty and despair. While the uncertainty persists, it's longer range than it was before and I can live with it. The despair is not an issue as I inch closer and closer to both my anniversary of diagnosis and the mean survival point of my first line chemotherapy regimen. I'm still here! I'm still living and enjoying life! That one thing that I wished for so much when I was first diagnosed I have been given - time. Time to get affairs in order. Time to tell people how much I love them. Time to attend concerts and sporting events. Time to go to Alaska.
So since things are pretty stable for me right now, please spare some of those thoughts, prayers, spells, incantations, etc. that you have so generously sent my way these past months for my colleague as she navigates these terrifying early days.
As part of my workup for this fever and cough I had a CT angiogram of my chest last week that showed most of my known metastatic disease. My last scan was December 3 and I went almost 4 weeks with no systemic treatment after that before starting the Alimta. There's been no change in the lung lesion (no visible solid tumor), the liver lesion is significantly smaller (3.6 cm down from 5.0 cm), the right adrenal lesion is slightly larger (4.1 cm up from 3.9 cm), the lymph node under the diaphragm is slightly larger (2.1 cm up from 1.9 cm) and the thoracic spine lesion is unchanged. Apparently there is some question about new small nodules in both lower lobes of my lungs. But to my read, this is stable disease and plenty of information to warrant continuing the Alimta. Radiologists at both Yale and my hospital have discs of everything and will be weighing in with their professional opinions, but I don't think it will change anything. No reason for a scan in February so it will probably be St. Patrick's Day (after my anniversary!) for the next scan. Between now and then Hannah and I will be in DC for volleyball over President's Day weekend, Lindsay and I will spend the following weekend at Canyon Ranch for rest, relaxation, pampering and some real mother-daughter bonding time, and then two more volleyball weekends - Rochester at the end of February and Schenectady mid-March. By the time I have the next scan I will only have one more volleyball tournament on the schedule!
I'm off today and working the weekend. It's supposed to warm up to 50 here on Sunday, which will be a very welcome change. Next Alimta on Tuesday, Neulasta Wednesday and on we go. I wish Phil hadn't seen his shadow, but I know spring will get here eventually. Everyone stay safe and warm and remember - pitchers and catchers report on Valentine's Day!
Lisa
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