I went in last Friday for a CT Scan of my pelvic, abdomen and chest areas. Unfortunately my radiologist has switched contrast agents from one that's like a distasteful Koolaid to a "creamy vanilla smoothie". That stuff was YUCK. Gave me a gut ache in no time and was thick and rich.
Anyway, my oncologist follow-up wasn't until this morning. I started having dreams about being told it was in my lungs now, etc. But instead, the news is pretty good. I haven't had further improvement, but the doc described the disease as "rock solid stable." He'd like to see what is going on with the tumor in head, but if that is also stable, he might move the CT scans to every 6 months. I am due for an MRI next month. I don't see the oncologist again until March.
Yay! Another big sigh of relief... and Merry Christmas to me! This will be a big change from last year which was a pretty miserable Christmas. :)
Update
Not really new information, but I had forgotten to mention something when I wrote the original post. I have been following a hysterectomy/cancer forum for 6 years from my first diagnosis in 2003. When I had my recurrance last November another forum member was also diagnosed with a uterine cancer recurrance. I felt a kinship to her and followed her progress as we went along figuring that we'd eventually be doing some of the same kinds of treatments. Just as I was starting to get particularly anxious about my own upcoming scan results I checked into the forum and found out she had died in October. That's kindof thrown me for a loop.
Wednesday, December 9, 2009
Friday, November 13, 2009
Anniversary
It was a year ago today that I went in for a CT Scan and found out my cancer was back. A year ago I really didn't think I'd be around now, let alone feeling reasonably good. I didn't know if I'd see my next birthday in March or make my niece's wedding in August. After the first miserable 4 months of treatment and a couple months of recovery, I feel I've had a very good year. I've been to Yellowstone for the first time, made several trips to the Washington/Oregon Coasts, enjoyed a summer of beautiful weather in Seattle, watched my niece get married in southern Oregon, spent time with family, gone to Disneyland and treated myself to a night at the Salish Lodge. I'm going to Arizona for Thankgiving to get a little sunshine and warm weather... and spend more time with family. I feel blessed to have had the last six months.
I'm still feeling pretty good though my hip has been a bit achier lately than it has been. It also seems like the bump on the side of my head from my tumor is a bit bigger. Maybe it psychological, knowing that I have another CT scan coming up in about 3 weeks, and this being the anniversary of my re-diagnosis, I'm really thinking alot that maybe my treatment break is coming to an end. I want to keep planning trips to look forward to, but I think I should wait for the results of the December scan. If my break continues, I'll definately be thinking of more trips to make in the coming months. If I have to go back into treatment, I'll buckle down and get it done, one day at a a time.
I'm still feeling pretty good though my hip has been a bit achier lately than it has been. It also seems like the bump on the side of my head from my tumor is a bit bigger. Maybe it psychological, knowing that I have another CT scan coming up in about 3 weeks, and this being the anniversary of my re-diagnosis, I'm really thinking alot that maybe my treatment break is coming to an end. I want to keep planning trips to look forward to, but I think I should wait for the results of the December scan. If my break continues, I'll definately be thinking of more trips to make in the coming months. If I have to go back into treatment, I'll buckle down and get it done, one day at a a time.
Friday, October 16, 2009
Another visit with the oncologist
This was a fairly quick visit. I had a pelvic exam and everything seems fine. He's encouraged by no new symptoms and I'm feeling fine still. So I'll have another CT Scan December 4th then I need to schedule a follow-up with him the following week. I had a blood draw for the CA-125 level and I asked if that was elevated if he would bring me back earlier. He said it would have to be VERY elevated before they would do that. He also mentioned that there are a couple new clinical trials that we could try when the times comes to get back into treatment. All in all another encouraging visit.
I forgot to ask if I should be getting an H1N1 flu shot.
By the way, the Disneyland visit last week went very well. I thought my energy stayed up pretty well (although my traveling companions might differ) and I had a great time. The park was pretty crowded Friday, Saturday and Sunday with lots of locals there to check out the special Halloween decorations, rides and fireworks. We had to cut out early because we couldn't take crowds like that. Here's a picture of Darcy and I enjoying one of my favorite Disneyland treats -- Mickey beignets!
I forgot to ask if I should be getting an H1N1 flu shot.
By the way, the Disneyland visit last week went very well. I thought my energy stayed up pretty well (although my traveling companions might differ) and I had a great time. The park was pretty crowded Friday, Saturday and Sunday with lots of locals there to check out the special Halloween decorations, rides and fireworks. We had to cut out early because we couldn't take crowds like that. Here's a picture of Darcy and I enjoying one of my favorite Disneyland treats -- Mickey beignets!
Wednesday, September 16, 2009
MRI today: more pretty good news
I had an MRI this morning at 7:30. I prefer the evening MRIs where I can take a couple ativan and go home and relax post exam. I didn't get my ear plugs in properly so the sound wasn't as muffled as I would have liked and it seemed like this one took longer. I survived though, then had to get through the day at work until I could go get my results this afternoon.
So I got to the Cyberdoc's and her staff was really perky and telling me to relax. Probably didn't mean anything, but I took it as a good sign. When the doc came in she said everything is exactly where it was back in April when I finished the regular radiation. She said because it's a slow growing cancer it may take a while to see results. It may also be that the bone never shrinks down so that it always looks to be the same size. But as long as it's not growing, which it is not, we're good.
So she put me on an MRI every 4 months schedule "for the next 2 years", then every 6 months for 3 years. She actually said after 5 years, we'd go once a year. I laughed at that because I don't seriously think this will stay dormant for that length of time. But I guess you never really know and that's the first time someone has said something that positive to me in a very long time. :)
She also gave me a sheet from my treatment plan that shows the radiation shots and the tumor from many different angles on the MRI scans. If I can get it scanned, I'll try to post it. Looking at the shots makes me want to name the sucker. "Timmy Tumor"? Any other suggestions? Maybe if you can see it, we can come up with a good name...
Addendum: Here's the MRI pic. You can tell the orientation you're looking at by looking at the little blue head in the lower left corner of each shot. I think I like the name "eye-gor" for a name. :)
Ooops... still have to work on that photo. It's in bmp format right now. Might have to change it to jpg.
Hopefully this works...
So I got to the Cyberdoc's and her staff was really perky and telling me to relax. Probably didn't mean anything, but I took it as a good sign. When the doc came in she said everything is exactly where it was back in April when I finished the regular radiation. She said because it's a slow growing cancer it may take a while to see results. It may also be that the bone never shrinks down so that it always looks to be the same size. But as long as it's not growing, which it is not, we're good.
So she put me on an MRI every 4 months schedule "for the next 2 years", then every 6 months for 3 years. She actually said after 5 years, we'd go once a year. I laughed at that because I don't seriously think this will stay dormant for that length of time. But I guess you never really know and that's the first time someone has said something that positive to me in a very long time. :)
She also gave me a sheet from my treatment plan that shows the radiation shots and the tumor from many different angles on the MRI scans. If I can get it scanned, I'll try to post it. Looking at the shots makes me want to name the sucker. "Timmy Tumor"? Any other suggestions? Maybe if you can see it, we can come up with a good name...
Addendum: Here's the MRI pic. You can tell the orientation you're looking at by looking at the little blue head in the lower left corner of each shot. I think I like the name "eye-gor" for a name. :)
Ooops... still have to work on that photo. It's in bmp format right now. Might have to change it to jpg.
Hopefully this works...
Friday, August 14, 2009
FANTASTIC news!
I saw my oncologist this afternoon and was really stressed out waiting for my appointment. I had to wait a long time to see him, too, because he was running late. But it was worth it -- the CT scan actually showed that most of the tumors are continuing to SHRINK! My spleen tumor has shrunk 40% just since April! The hip looks better... no new tumors. This was good news beyond my wildest expectations! I had figured the best I could hope for would be stable disease. I don't think I've ever left his office happier. :)
And I don't don't have to go back again for 2 months!
And I don't don't have to go back again for 2 months!
Thursday, August 13, 2009
Visit with the cyberknife doc
I must admit I got quite concerned when I walked into the exam room and saw the Swedish pamphlet on advance directives laying on the exam table. Uh-oh. Reminded me of when I walked into the radiation doc's exam room in January to find a head mask sitting on the counter. I knew then that the lump on my head was cancer.
Turns out it was just there... not related to me at all. Whew. So we just went through the kinds of side effects I'd been experiencing. She said we'll want to MRI it every couple months and watch for changes. So I go back for an MRI and an appointment the same day -- September 16th. Lets hope tomorrow goes as smoothly.
Turns out it was just there... not related to me at all. Whew. So we just went through the kinds of side effects I'd been experiencing. She said we'll want to MRI it every couple months and watch for changes. So I go back for an MRI and an appointment the same day -- September 16th. Lets hope tomorrow goes as smoothly.
Wednesday, August 12, 2009
CT today -- Results Friday
I had a pelvic, abodomen and chest CT today, with contrast. I wil see the cyberknife doc tomorrow and the oncologist on Friday afternoon. Should have updated info then, but will be going camping so the blog may not get updated until Sunday.
REALLY enjoyed getting away to spend the week with family for my niece's wedding on the eighth. I had some pain in my hip from all the car sitting (9 hour drive with stops) and getting used to a new bed, but it got better pretty quickly. It's hard to come back to the real world today and the rest of this week. I'll try to take it as it comes.
Meantime, enjoy some pics from last week!
REALLY enjoyed getting away to spend the week with family for my niece's wedding on the eighth. I had some pain in my hip from all the car sitting (9 hour drive with stops) and getting used to a new bed, but it got better pretty quickly. It's hard to come back to the real world today and the rest of this week. I'll try to take it as it comes.
Meantime, enjoy some pics from last week!
Wednesday, July 8, 2009
Latest Oncologist Appointment
I saw my regular oncologist today for the first time since mid-May. After the exam he said things seemed to be going well so far. He will schedule a CT scan prior to my next apointment next month so we will then see how things are REALLY going. He was happy to hear my energy level was close to normal. And I am pleased that I am done with treatment issues until after my niece's wedding in August. Eight months ago I wasn't even sure I would be able to attend.
Wednesday, July 1, 2009
CyberKnife is done
I got a call yesterday afternoon wanting to reschedule the procedure to 10:30 this morning. Fortunately that worked for me. I took a couple of ativan since I was expecting to be on the table for 1.5 hours. They take the time to make you very comfortable, turn down the lights, put on your favorite music, and away you go with this robot kindof "dancing" around you, pausing occassionaly to deliver a short zap. The machine is much quieter than a standard radiation machine, so that was nice. I might have fallen asleep but because it was zapping around my eyes I would get frequently flashes of bright light. Then after a while my lower back started hurting. We finished 30 minutes early since I stayed so still, they were able to move quickly. The tech called me the "zen master" of lying still. I was a little dizzy when they sat me up, but I also get dizzy when the dentist sits up the chair after a cleaning. :)
They said the most comment side effect is fatigue for a couple days. I feel a bit out of it now, but I'm sure that's the ativan. One good thing about leaving it at the end of the day -- had I done that -- is that I wouldn't have to be functional. Now I have an afternoon of work ahead of me and I'm not feeling that sharp mentally.
UPDATE: I ended up going home about 4pm yesterday. Instead of perking up like you would expect with the ativan wearing off, I got more and more tired. I fell asleep on the couch watching the 5pm news and went to bed for a couple hours. I woke up tired but was able to stay awake until 10pm. Feeling a little tired still this morning, but nothing like yesterday afternoon. We'll see if I crash this afteroon like I did yesterday. Fortunately I have a 3 day weekend to recover. Might have to do alot of napping. :)
They said the most comment side effect is fatigue for a couple days. I feel a bit out of it now, but I'm sure that's the ativan. One good thing about leaving it at the end of the day -- had I done that -- is that I wouldn't have to be functional. Now I have an afternoon of work ahead of me and I'm not feeling that sharp mentally.
UPDATE: I ended up going home about 4pm yesterday. Instead of perking up like you would expect with the ativan wearing off, I got more and more tired. I fell asleep on the couch watching the 5pm news and went to bed for a couple hours. I woke up tired but was able to stay awake until 10pm. Feeling a little tired still this morning, but nothing like yesterday afternoon. We'll see if I crash this afteroon like I did yesterday. Fortunately I have a 3 day weekend to recover. Might have to do alot of napping. :)
Wednesday, June 24, 2009
Cyberknife Procedure Scheduled for July 1
Finally we have a date. Surprisingly, instead of the five 45 minute sessions, I'll only be doing one 1.5 hour session. I am curious about the change in the plan. I think my doc must be on vacation because she talked of another doctor being there on the day of the procedure itself.
I have my regular monthly checkup with my oncologist on July 8th. So far there is nothing new to report. Hope things stay that way for the next 2 weeks.
I have my regular monthly checkup with my oncologist on July 8th. So far there is nothing new to report. Hope things stay that way for the next 2 weeks.
Sunday, June 21, 2009
Insurance approves Cyberknife procedure
I went in on Friday for the fitting of my new plastic mask and learned that Group Health had authorized Cyberknife for me. That's a relief. The fitting went very quickly compared to the last one. The mask is slightly smaller and they made it tight over my forehead, but not as tight over my nose, eyes and chin. They will cut out eye holes so it won't be so claustrophobic. They also have a pad to lay on and padding under my head too so I should be more comfortable. They will call next week to set up scheduling. She said I wouldn't start next week, but probably the week after.
We're on our way to the coast (Seaside, OR) to spend some time with my sister. The weather is supposed to improve by tomorrow so it should be a pleasant trip -- just short. We're heading back on Wednesday. Then I will be leaving my current position at work temporarily to be the interim supervisor in another office division while they search for a permanent replacement for the position. It'll be a busy week getting ready to leave.
I still need to get around to posting a picture of my hair. :)
We're on our way to the coast (Seaside, OR) to spend some time with my sister. The weather is supposed to improve by tomorrow so it should be a pleasant trip -- just short. We're heading back on Wednesday. Then I will be leaving my current position at work temporarily to be the interim supervisor in another office division while they search for a permanent replacement for the position. It'll be a busy week getting ready to leave.
I still need to get around to posting a picture of my hair. :)
Saturday, June 13, 2009
Update on cyberknife scheduling
I've had a little trouble getting the cyberknife scheduled. I understood they were going to call my Group Health PCP (primary care physician) to get the needed referral for maximum coverage. When I hadn't heard anything in a week, I called back to see what was up. They said they were waiting to hear from me. ???? They said my PCP needed to actually see me for an appointment before I could get the referral. Would have been nice to get a call telling me that.
So I scheduled an appointment as early as I could (yesterday morning). On Thursday I got a call saying they had actually gotten a referral from my PCP already. I went to the appointment yesterday anyway just so I could have a talk with the PCP about my situation and she would hopefully be more cooperative about future treatment needs. I liked her. We were definitely on the same page and I signed an ROI so she can get more of my records. I'm even considering switching to her for primary care... mostly for convenience sake. I like my regular PCP but she's up in North Seattle. This Doc is about 10 blocks away.
Anyway, we are still waiting for approval from Group Health. But they called yesterday to get my planning session set up because they are running out of spaces. Hopefully I can get in next week, then get treatment started right after we get back from our trip to Seaside, Oregon. I'll need another MRI if we have to wait until July.
Good news on the headache front. I haven't had a headache since my last post. I guess it wasn't the megace, but some kind of a bug that caused it. The fever and the headache had gone by the next day... and haven't been back. I hate to jinx it by saying anything, but I have felt pretty good this week. Other than my eye, you wouldn't know I'm carrying around 4 tumors. I have also let go of hats altogether. My hair coloring has faded to purple. I like the effect with the new hair coming in a just a hint of color. I'll try to get an updated picture posted. :)
So I scheduled an appointment as early as I could (yesterday morning). On Thursday I got a call saying they had actually gotten a referral from my PCP already. I went to the appointment yesterday anyway just so I could have a talk with the PCP about my situation and she would hopefully be more cooperative about future treatment needs. I liked her. We were definitely on the same page and I signed an ROI so she can get more of my records. I'm even considering switching to her for primary care... mostly for convenience sake. I like my regular PCP but she's up in North Seattle. This Doc is about 10 blocks away.
Anyway, we are still waiting for approval from Group Health. But they called yesterday to get my planning session set up because they are running out of spaces. Hopefully I can get in next week, then get treatment started right after we get back from our trip to Seaside, Oregon. I'll need another MRI if we have to wait until July.
Good news on the headache front. I haven't had a headache since my last post. I guess it wasn't the megace, but some kind of a bug that caused it. The fever and the headache had gone by the next day... and haven't been back. I hate to jinx it by saying anything, but I have felt pretty good this week. Other than my eye, you wouldn't know I'm carrying around 4 tumors. I have also let go of hats altogether. My hair coloring has faded to purple. I like the effect with the new hair coming in a just a hint of color. I'll try to get an updated picture posted. :)
Sunday, June 7, 2009
Latest MRI
I had an MRI on June 1st and saw the Cyberknife doc on the 2nd. There had been no further shrinkage of my head tumor, [but at least it's still stable] so she advises doing the Cyberknife procedure now. I am waiting for insurance approval and then they will call to schedule the treatments. It will be one planning session, then 5 45 minute treatments 5 days in a row. She wanted to get going soon so I'm a little worried that my insurance is denying coverage since they haven't called to schedule yet.
I think I have also pinpointed the cause of my headaches to the megace. I started back on that on Thursday evening and by Saturday, and today, I'm back to intense headaches every day. I'm also feeling run down again and achy. I just took my tempurature and it was up to 100.7 so maybe I've got the flu or some other virus.
I think I have also pinpointed the cause of my headaches to the megace. I started back on that on Thursday evening and by Saturday, and today, I'm back to intense headaches every day. I'm also feeling run down again and achy. I just took my tempurature and it was up to 100.7 so maybe I've got the flu or some other virus.
Saturday, May 23, 2009
Hair growth
This is 5 days after the prevous post's picture. As you can see, it is coming in rapidly now. I should be able to go without the hat in a couple weeks. Yay!
Thursday, May 21, 2009
Second Opinion Clears Up Misunderstanding
I saw the oncologist my primary care doc suggested I see for a second opinion. It was definitely very helpful if only to clear up a serious misunderstanding I had taken from my treating oncologist after finishing chemo during our April meeting. He had said that I would not be doing further chemo, which led me to believe there were no further chemo options for me.
This guy said there were still lots of chemo options to try, but they are harsher and will take a permanent physical toll. The taxol/carbo did have an effect in shrinking most of my tumors, even if only slightly. I still remain essentially symptom free with a pretty good quality of life so it make sense to stop chemo for now and see how the hormone treatment works for me. The longer I can drag things out with things remaining stable, the better. Only when it becomes clear the tumors are growing again will they consider the next chemo to try. That was a big relief to me. Not that I'm looking forward to being further poisoned by chemo. Better than the alternative, though.
I may also be eligible for the clinical trial I was rejected for in April at some later stage after my disease has progressed. Given that I am doing pretty well now, they probably don't want to put me through their trial at this point.
Bottom line is he agreed fully with all the treatment decisions my regular doc is making. He just explained it better. He did say "I hope your doctor has told you that this is incurable." He hasn't, but it has been crystal clear to me since I did not get a great response to the taxol/carbo chemo. He also said that my doc is a very busy guy in high demand so he needs to see as many people as possible. [He's primarily an expert surgeon] He's always in Seattle's Best Doctors edition of a local magazine. So I'm lucky to have him and have always trusted him. I did the second opinion appointment to satisfy my PCP and Darcy, but it was worth it to get a more thorough explanation. I am definitely more encouraged that I'm not going to croak anytime soon.
The hair is steadily coming in, but still pretty uneven. I dyed it blue (looks purple now) a couple weeks ago which is kind of fun. But there is a big swath down the left side that has only just started really coming in. It also pretty white so compared to the blue, really looks bald. I still expect to lose the hats in a couple weeks. They're just too hot and uncomfortable in the summer.
Maybe I'll post a picture of the new look soon. :)
This guy said there were still lots of chemo options to try, but they are harsher and will take a permanent physical toll. The taxol/carbo did have an effect in shrinking most of my tumors, even if only slightly. I still remain essentially symptom free with a pretty good quality of life so it make sense to stop chemo for now and see how the hormone treatment works for me. The longer I can drag things out with things remaining stable, the better. Only when it becomes clear the tumors are growing again will they consider the next chemo to try. That was a big relief to me. Not that I'm looking forward to being further poisoned by chemo. Better than the alternative, though.
I may also be eligible for the clinical trial I was rejected for in April at some later stage after my disease has progressed. Given that I am doing pretty well now, they probably don't want to put me through their trial at this point.
Bottom line is he agreed fully with all the treatment decisions my regular doc is making. He just explained it better. He did say "I hope your doctor has told you that this is incurable." He hasn't, but it has been crystal clear to me since I did not get a great response to the taxol/carbo chemo. He also said that my doc is a very busy guy in high demand so he needs to see as many people as possible. [He's primarily an expert surgeon] He's always in Seattle's Best Doctors edition of a local magazine. So I'm lucky to have him and have always trusted him. I did the second opinion appointment to satisfy my PCP and Darcy, but it was worth it to get a more thorough explanation. I am definitely more encouraged that I'm not going to croak anytime soon.
The hair is steadily coming in, but still pretty uneven. I dyed it blue (looks purple now) a couple weeks ago which is kind of fun. But there is a big swath down the left side that has only just started really coming in. It also pretty white so compared to the blue, really looks bald. I still expect to lose the hats in a couple weeks. They're just too hot and uncomfortable in the summer.
Maybe I'll post a picture of the new look soon. :)
Tuesday, May 5, 2009
Short Update
It's been a while since I posted so I thought I'd give a brief update, though not much has happened. I do have an MRI scheduled for June 1st and the follow-up with the Cyberknife Doc the next day. I have been having pretty consistent headaches since I saw her last, but they are not getting any worse and there hasen't been any increase in swelling or anything like that. And I don't have them every day... just frequently.
My hair is starting to come back in tantilizingly slowly. :) I do have a HUGE bald spot on the left side of my head [the opposite of where the tumor is] because the radiation site ran from the back of my head over my ear. So the hair is getting pretty thick at the back of my head, then there is a BIG chunk of completely missing hair all the way up the left side of my head. Bummer. It'll mean wearing a hat longer than I had hoped. The front is coming is slower but I remember that from last time too.
I have been feeling alright after 6-7 weeks of no treatment but hormone treatment. Still some stiffnes in my hip, but it's tolerable and hasn't worsened at least. I did get sick on Sunday with a stomach ache and severe diarhea [sorry for the details]. I was worried about getting the flu with my compromised system and a little worried I might have a partial intestinal blockage. I saw my primary care physician yesterday and she said I don't have the flu. More likely gastroenteritis, but she ran some blood tests to make sure there wasn't something else going on. She called today to say things looked fine, except my potassium level is low. She wrote me a prescription for that. I guess that could acount for why I've been weak and tired so much lately. So we'll give the potassium a try and see if my energy picks up any.
She also recommended I get a second opinion on cancer treatment and gave me a referral. She's so nice she got my insurance to approve it already. This guy has an excellent bedside manner so that should help. We'll see if he has any other ideas.
Finally, I've made plans to meet family at Yellowstone at the end of this month. I've never been and my brother-in-law's family has some cabins just outside the park. They will be there and my sister invited me up. So it's turned into a mini-family reunion. I really wanted to see my nephew now cause who knows how I'll be feeling in August at my niece's wedding.
My hair is starting to come back in tantilizingly slowly. :) I do have a HUGE bald spot on the left side of my head [the opposite of where the tumor is] because the radiation site ran from the back of my head over my ear. So the hair is getting pretty thick at the back of my head, then there is a BIG chunk of completely missing hair all the way up the left side of my head. Bummer. It'll mean wearing a hat longer than I had hoped. The front is coming is slower but I remember that from last time too.
I have been feeling alright after 6-7 weeks of no treatment but hormone treatment. Still some stiffnes in my hip, but it's tolerable and hasn't worsened at least. I did get sick on Sunday with a stomach ache and severe diarhea [sorry for the details]. I was worried about getting the flu with my compromised system and a little worried I might have a partial intestinal blockage. I saw my primary care physician yesterday and she said I don't have the flu. More likely gastroenteritis, but she ran some blood tests to make sure there wasn't something else going on. She called today to say things looked fine, except my potassium level is low. She wrote me a prescription for that. I guess that could acount for why I've been weak and tired so much lately. So we'll give the potassium a try and see if my energy picks up any.
She also recommended I get a second opinion on cancer treatment and gave me a referral. She's so nice she got my insurance to approve it already. This guy has an excellent bedside manner so that should help. We'll see if he has any other ideas.
Finally, I've made plans to meet family at Yellowstone at the end of this month. I've never been and my brother-in-law's family has some cabins just outside the park. They will be there and my sister invited me up. So it's turned into a mini-family reunion. I really wanted to see my nephew now cause who knows how I'll be feeling in August at my niece's wedding.
Friday, April 17, 2009
Update on the hormone treatment
I read up a bit on the hormone treatment and wanted to clarify that things may not be totally bleak. I guess about 30% of people respond well to hormone therapy (in terms of slowing growth, not killing the cancer) so if I respond well, I may hang in there for a while yet. So, again, the June scan should reveal how well the hormone therapy works for me. Am I in the 30% -- or the other 70%? Time will tell.
Turned Down for Clinical Trial
I got a call from my oncologist's office yesterday and it only took a day to get turned down for the clinical trial he spoke of the day before. I figured I wouldn't be a good candidate. So the hormone therapy really is my last ditch treatment, except for whatever radiation I can do for areas that can still be zapped for symptom relief.
I guess the June scans will give me an idea of my longevity if there has been a change in the tumor size then.
Maybe I should think about traveling while I still feel decent.
I guess the June scans will give me an idea of my longevity if there has been a change in the tumor size then.
Maybe I should think about traveling while I still feel decent.
Wednesday, April 15, 2009
No More Chemo
I saw my oncologist this morning to get the CT Scan results and essentially after 6 rounds of chemo and radiation to my hip and head, the best we accomplished is "stable" disease. In other words, no new growth. I can't continue on with that chemo since the accumulated effects will get worse and the good being accomplished is limited. So I will continue with the hormone therapy, a therapy that is decades old and doesn't work that well or that long. The doctor is going to try to get me considered for a clinical trial on a drug that works by cutting off the blood supply to tumors. It has not been studied on endometrial cancer so it seems unlikely they will accept me. If they are going to consider it, I will have to do a bunch of additional testing to see if I am eligible. The drug is VERY expensive and not covered by insurance, but if accepted into the trial, it will be free.
We also asked about surgery and it sounds like he has given up on that because the chemo didn't do the job of substantially shrinking the tumors. There is no point in putting me though a complex, risky surgery when I would still have bulky tumors elsewhere that can't be ressected.
So I think we're coming to the end of the line on treatment options. If I don't get into the clinical trial, all we can do now is try to keep me feeling as healthy as I can for as long as I can. The plan is to scan again in a couple months and see how the hormone therapy is working on it's own. I can still do radiation to the hip and head again. As far as I know, that is not an option for the spleen. The couple months will give me a chance to recover some strength for the battle ahead. We did not talk time frames at all. That may come up next time when we see what's happened without the chemo.
So the good news is a two month break from treatment. Maybe I'll get some hair back so I can lose the hat. (yay!) The bad news... my time is limited... I just don't know how limited. It has been a slow growing cancer. Maybe that means it will take longer. I'm sure they will do palliative care where they can to relieve symptoms.
Speaking of which, there is no indication the tumor in my hip is growing so my odd hip (butt really) discomfort may just be related to the hip bone thinning due to radiation.
We also asked about surgery and it sounds like he has given up on that because the chemo didn't do the job of substantially shrinking the tumors. There is no point in putting me though a complex, risky surgery when I would still have bulky tumors elsewhere that can't be ressected.
So I think we're coming to the end of the line on treatment options. If I don't get into the clinical trial, all we can do now is try to keep me feeling as healthy as I can for as long as I can. The plan is to scan again in a couple months and see how the hormone therapy is working on it's own. I can still do radiation to the hip and head again. As far as I know, that is not an option for the spleen. The couple months will give me a chance to recover some strength for the battle ahead. We did not talk time frames at all. That may come up next time when we see what's happened without the chemo.
So the good news is a two month break from treatment. Maybe I'll get some hair back so I can lose the hat. (yay!) The bad news... my time is limited... I just don't know how limited. It has been a slow growing cancer. Maybe that means it will take longer. I'm sure they will do palliative care where they can to relieve symptoms.
Speaking of which, there is no indication the tumor in my hip is growing so my odd hip (butt really) discomfort may just be related to the hip bone thinning due to radiation.
Friday, April 10, 2009
MRI results
Got the news on the MRI from last Friday and it's not the best, but it's still pretty good news. She can't detect any shrinkage, but it has definitely stopped growing. The doctor said that if the radiation stops the growth that it will generally not resume growing for another 6 - 12 months. Initially she said she wanted to wait 4 months and MRI it again. After talking it through, she decided to MRI it in 2 months. If it's shrunk some, away from the optic nerve (which has been pushed off the the side quite a bit, she'll probably want to do the cyberknife treatment then since she could maximum dose it with less risk. If it's holding steady, she'll probably wait another 2 months. At least that was my understanding. Bottom line -- no more head radiation until June. Yay!
I asked her about the hip issues I've been having and she said there is definitely nothing in that area in the Jan CT scan so it's hard to say what's going on. The CT scan on Monday might be able to say what the problem is. I have NO problems at all with the groin area that was bothering me BEFORE radiation and chemo. I have just been having some "tightness" in my glutemous maximous area. I've also been having more pain after being in bed for about 4 hours instead of the usual 6 hours. My the morning, my side is really achy. So I suspect the spleen thing may be the real problem. I just started taking megace on Saturday and that tends to have a lot of side effects so I wonder if it could be related to that.
So, by Wednesday I'll hopefully have a fuller picture of where I'm at. I'm really hoping for a break from chemo. I'd like to see some hair back now that the weather is warming up. The hat is getting HOT. I feel bad that such a small consideration -- hair -- is my focus when finding effective treatment should be my priority. :)
So now we wait until Wednesday to see what to do about the hip and the spleen tumors.
I asked her about the hip issues I've been having and she said there is definitely nothing in that area in the Jan CT scan so it's hard to say what's going on. The CT scan on Monday might be able to say what the problem is. I have NO problems at all with the groin area that was bothering me BEFORE radiation and chemo. I have just been having some "tightness" in my glutemous maximous area. I've also been having more pain after being in bed for about 4 hours instead of the usual 6 hours. My the morning, my side is really achy. So I suspect the spleen thing may be the real problem. I just started taking megace on Saturday and that tends to have a lot of side effects so I wonder if it could be related to that.
So, by Wednesday I'll hopefully have a fuller picture of where I'm at. I'm really hoping for a break from chemo. I'd like to see some hair back now that the weather is warming up. The hat is getting HOT. I feel bad that such a small consideration -- hair -- is my focus when finding effective treatment should be my priority. :)
So now we wait until Wednesday to see what to do about the hip and the spleen tumors.
Saturday, April 4, 2009
MRI
The procedure took longer (I was there a total of 3 hours) than I expected but most of that time was spent waiting to get into the room. They had to access my port and the nurse who does that had a ferry to catch so they brought me back early and I spent better than a 1/2 hour waiting for my turn.
Once I got in there they set me up with ear plugs. A cage (not form fittng like the radiation mask) goes over your head and they stuffed additional foam padding in around the side of my face both to keep my head still and to provide additional sound deadening. And it's a good thing they did. That machine is NOISY! I've since read the decibels it puts out are similar to a jet taking off.
The biggest surprise to me was that instead of just putting my head in the machine like I expected, they slid me in up to my waist. It was a tight fit which was a little claustrophobic. They have a mirror attached to the head piece so you can look out through the foot area, and they have a good cooling breeze running through there which I found very helpful. And I had thought ahead and had taken an ativan. But it was still unpleasant. They took 5 separate scans. The first was only a minute, but the others were between 5 and 8 minutes. After the third, they pulled me out, injected some contrast solution and sent me back in. I found the best thing to do was to keep my eyes closed. There was nothing to look at anyway and looking at how close the wals of the tube have you closed in could get a little freaky if you stop to think about it too much. After a while, I could have almost drifted off, but the noise is crazy and the machine thumps and vibrates and changes tones, etc, so it keeps you on edge.
Oh well, at least that's over. I woder if they wait until May for the Cyberknife if they would do it again.
Once I got in there they set me up with ear plugs. A cage (not form fittng like the radiation mask) goes over your head and they stuffed additional foam padding in around the side of my face both to keep my head still and to provide additional sound deadening. And it's a good thing they did. That machine is NOISY! I've since read the decibels it puts out are similar to a jet taking off.
The biggest surprise to me was that instead of just putting my head in the machine like I expected, they slid me in up to my waist. It was a tight fit which was a little claustrophobic. They have a mirror attached to the head piece so you can look out through the foot area, and they have a good cooling breeze running through there which I found very helpful. And I had thought ahead and had taken an ativan. But it was still unpleasant. They took 5 separate scans. The first was only a minute, but the others were between 5 and 8 minutes. After the third, they pulled me out, injected some contrast solution and sent me back in. I found the best thing to do was to keep my eyes closed. There was nothing to look at anyway and looking at how close the wals of the tube have you closed in could get a little freaky if you stop to think about it too much. After a while, I could have almost drifted off, but the noise is crazy and the machine thumps and vibrates and changes tones, etc, so it keeps you on edge.
Oh well, at least that's over. I woder if they wait until May for the Cyberknife if they would do it again.
Friday, April 3, 2009
MRI today
I have a feeling that the tumor in my hip is growing again, which would mean that the chemo is not working. I have been having some discomfort on the back side of my rear end, which is the opposite side of where the groin tumor was. I guess it's possible that it is late developing radiation damage but I tend assume the worst until I hear otherwise. My CT scan isn't until April 13th so I won't hear anything about that until my follow-up on April 15th.
In the meantime, I get my first MRI this afternoon. I have noticed my eye is more swollen in the mornings lately which again could be from the radiation or could be a sign the radiation wasn't effective. At least I'll meet with the cyberknife doc next Friday for the verdict on that.
So I'm feeling less confident that treatment is working. *Sigh*
In the meantime, I get my first MRI this afternoon. I have noticed my eye is more swollen in the mornings lately which again could be from the radiation or could be a sign the radiation wasn't effective. At least I'll meet with the cyberknife doc next Friday for the verdict on that.
So I'm feeling less confident that treatment is working. *Sigh*
Saturday, March 21, 2009
Chemo # 6 -- Last one for now?
I'm back in the hospital for what is my last scheduled round of taxol/carbo. I saw a substitute oncologist yesterday, as my regular doctor was out. I was told to schedule a total body CT scan (head, pelvis, abodmen and chest) for April 13th and come back to see my oncologist on April 15th to see what's next. Possiblities, in my mind, include: take a break and schedule spleen removal surgery, just take a break, continue with this chemo, or try another chemo. I also have an MRI for my head tumor on April 3rd and the follow-up with the cyberknife doc on April 10th. So the future battle plan should be in place by April 15th.
Regardless, I am looking forward to even a short break from chemo that I will get by virtue of not getting a 7th round on April 9th. My energy level has been pretty low. My head is definitely improving after finishing radiation. Took about 2 weeks, but the watering eye and the skin irritation is definitely better. The swelling seems to have gone down. I still have a small bump on the side of my head, but I think it's smaller than when I first noticed it in December. It may just be that the bone is distended and maybe that just won't go down readily. I'll have to ask about that.
As for other symptoms, I'm really not noticing anythng in the spleen area, so hopefully that means that the tumor has shrunk even further. I had a bit of a scare when we went to the coast for my birthday last weekend. Sunday, my left hip got a bit sore... kind of stiff and tender right where the hip connects to the femur. It was on the opposite side of where the tumor is and felt more like the stiffness in the muscle I was experiencing during hip radiation. It's mostly gone away now, so I suspect it was related to sitting in the car for hours, which I really hadn't done since September. I also spent several hours sitting on a hard kitchen chair visiting a friend on Sunday. Hopefully that's all it was. Guess the upcoming CT will shed more light on that.
Now for this latest hospital experience. When I saw the oncologist yesterday, I checked in 15 minutes early so I could get my blood drawn and have the results available for the doc. They did not get the blood drawn before they took me to the back where I sat for at least 30 minutes because the substitute doc had not yet arrived. After that appointment they sent me over to get my port accessed and have the blood drawn in the process. They said it would take 15 minutes for the results so I asked the nurse to call with the results to confirm that the chemo would go forward. Darcy and I went to get coffee then arrived at the hospital at 10:30 and checked in. I got a message from the nurse AFTER I had already checked in saying the tests were fine, but wouldn't make it to the hospital until 11 a.m. so if I had any errands I wanted to run I could do that. I figured I'd just head up to my room because they usually have a long questionairre they go through in the room.
This time I was housed on the oncology floor. At least they know what they are doing, but the rooms themselves are not nearly as nice as the SW wing rooms (although I did have a view of the Space Needle). They are also a lot busier up here with some seriously ill patients so I would think I am a pretty low priority for them, which is quite understandable. (Trade-offs) The nurse came in and said they were just waiting for the orders from the doc, then I didn't see him again for another 3 hours. He came in at 2 to say that they had not run a creatin test at my doc's that moring so he needed to draw more blood to send to the lab. That took another hour. So the pre-chemo didn't get started until 3 p.m. -- a new record for late. The taxol didn't get going until 5 p.m. We agreed to run it at a 2.5 hour rate rather than the usual 3 hours to save a little time. We were able to get the carbo started at 7:30. Fortunately, I had two old friends stop by for a visit, one of whom I hadn't seen in more than a year. It was a blast and really made the time fly (Thanks Hattye and Ron!) They left at 11:00 and I got a dose of ativan at 11:30 and dozed off. I was woken frequently through the night for the start of the last dose of carbo (which the nurse said she was running at an 11-hour rate, rather than the usual 12-hour rate) more pre-meds, and multiple vitals checks.
So I'm tired this morning, but actually feel a little better than I did during the last round. I think being at the end of the head radiation really affected how I was feeling then. I'm hoping to be out of here around 12:30 instead the 3 p.m. I was fearing. We'll see. I'm actually unclear as the when that last dose got started since I was pretty sleepy when it got going.
Regardless, I am looking forward to even a short break from chemo that I will get by virtue of not getting a 7th round on April 9th. My energy level has been pretty low. My head is definitely improving after finishing radiation. Took about 2 weeks, but the watering eye and the skin irritation is definitely better. The swelling seems to have gone down. I still have a small bump on the side of my head, but I think it's smaller than when I first noticed it in December. It may just be that the bone is distended and maybe that just won't go down readily. I'll have to ask about that.
As for other symptoms, I'm really not noticing anythng in the spleen area, so hopefully that means that the tumor has shrunk even further. I had a bit of a scare when we went to the coast for my birthday last weekend. Sunday, my left hip got a bit sore... kind of stiff and tender right where the hip connects to the femur. It was on the opposite side of where the tumor is and felt more like the stiffness in the muscle I was experiencing during hip radiation. It's mostly gone away now, so I suspect it was related to sitting in the car for hours, which I really hadn't done since September. I also spent several hours sitting on a hard kitchen chair visiting a friend on Sunday. Hopefully that's all it was. Guess the upcoming CT will shed more light on that.
Now for this latest hospital experience. When I saw the oncologist yesterday, I checked in 15 minutes early so I could get my blood drawn and have the results available for the doc. They did not get the blood drawn before they took me to the back where I sat for at least 30 minutes because the substitute doc had not yet arrived. After that appointment they sent me over to get my port accessed and have the blood drawn in the process. They said it would take 15 minutes for the results so I asked the nurse to call with the results to confirm that the chemo would go forward. Darcy and I went to get coffee then arrived at the hospital at 10:30 and checked in. I got a message from the nurse AFTER I had already checked in saying the tests were fine, but wouldn't make it to the hospital until 11 a.m. so if I had any errands I wanted to run I could do that. I figured I'd just head up to my room because they usually have a long questionairre they go through in the room.
This time I was housed on the oncology floor. At least they know what they are doing, but the rooms themselves are not nearly as nice as the SW wing rooms (although I did have a view of the Space Needle). They are also a lot busier up here with some seriously ill patients so I would think I am a pretty low priority for them, which is quite understandable. (Trade-offs) The nurse came in and said they were just waiting for the orders from the doc, then I didn't see him again for another 3 hours. He came in at 2 to say that they had not run a creatin test at my doc's that moring so he needed to draw more blood to send to the lab. That took another hour. So the pre-chemo didn't get started until 3 p.m. -- a new record for late. The taxol didn't get going until 5 p.m. We agreed to run it at a 2.5 hour rate rather than the usual 3 hours to save a little time. We were able to get the carbo started at 7:30. Fortunately, I had two old friends stop by for a visit, one of whom I hadn't seen in more than a year. It was a blast and really made the time fly (Thanks Hattye and Ron!) They left at 11:00 and I got a dose of ativan at 11:30 and dozed off. I was woken frequently through the night for the start of the last dose of carbo (which the nurse said she was running at an 11-hour rate, rather than the usual 12-hour rate) more pre-meds, and multiple vitals checks.
So I'm tired this morning, but actually feel a little better than I did during the last round. I think being at the end of the head radiation really affected how I was feeling then. I'm hoping to be out of here around 12:30 instead the 3 p.m. I was fearing. We'll see. I'm actually unclear as the when that last dose got started since I was pretty sleepy when it got going.
Sunday, March 8, 2009
Real Fatigue Sets In
I finished radiation on Wednesday, but have noticed an increase in symptoms from that, including skin irritation, a runny eye, vision problems and pretty significant fatigue. I was back at work on Thursday as usual and was able to finish work by about 3pm. Friday I was feeling OK, but about 2pm I got REALLY tired and went home early. I was hoping I'd perk up a bit with rest, but I have continued to feel exhausted and if anything it seeems to be getting worse. I need to go to work this afternoon but I'm not sure I can last very long seeing clients. I think the next couple weeks, maybe even a month, will be pretty rough. Maybe to the point that I may need to take some time off. My current position isn't that demanding, but I'm having trouble keeping up with it. I was really hoping to work until we figured out if I will do spleen surgery to save up disability time for that time off. We'll see if I can last that long.
Saturday, February 28, 2009
Chemo hat fashion show
A few fleece hats
Note the post-steroid face flush!
Reversible "fur" hat from Lori
Naughty hat
Black jersey hat with offending flower removed
Knit hat
A few jersey hats for spring
Note the post-steroid face flush!
Chemo # 5 nearly done
It 's been another frustrating overnight stay at the hospital, though it went a little better than the last time.
It started with the pre-chemo doctor visit where I got some encouraging news for a change. My tumor marker [CA125] was down to 8 from the 48 where it was at 3 months ago. 8 is the range it was in for the entire time after I finished treatment five years ago until last April when it had crept up to 17. And that number [the 8] was taken just before my last treatment so it was only after 2 full and 1 more aborted chemo treatments and prior to beginning radiation on the head tumor. That really boosted my mood. We'll keep going for the 6th round and then do another CT scan to see where things are at. I think he's planning to leave the head treament to the radiation docs and an MRI is scheduled for April 3rd for that. The MRI will give a lot more detail to help plan the cyberknife treatment, including when to do it.
I told the doctor about how frustrating the chemo treatment at the hospital was last time. He was sympathic about the delays, but I had the impression he hears that from everyone. I asked if they could access my port while I was there to save a couple hours anyway and he said they could do that. He also said he would make sure I got Zofran again, every 8 hours while I'm in the hospital. I also asked about the fact that they did not do a saline drip for hydration while giving the chemo, which was fine, just that they hadn't told me so I didn't start out drinking enough. It was such a nice day yesterday, I even asked if he could arrange for a room with a view of Mt. Rainier.
So I got checked into the hospital with my port already accessed, eager to get things started. When I go up to th 11th floor, the nurse said that Drescher had asked them to put me in a room on the south side of the building with a Mt. Rainier view. Excellent! He had also asked them to run simultaneous IV fluids. But I still had to sit around and wait ... and wait ... and wait to start chemo. The nurse came by after a couple hours and said they would be starting a second IV line for a saline drip for hydration. I didn't think that meant an IV in my hand, but that's what they meant. So when the IV lady arrived and I realized their intent I told her that at the Cancer Institute they ran the hydration line through the same infusion machine into my port. She said she wasn't sure the two should be mixed, but she'd find out. After a while the RN can back to ask if the IV had been put in so I again explained to her how it was done at the Cancer Institute. She said she would check, and sure enough, came back a 1/2 hour later saying they could do that. Then it was waiting for drugs. We finally got started at 1:00 this time! So an hour later than last time, probably due to my bitching about them wanting to put in an unnessesary 2nd IV line.
At least this time they had the drugs lined up and ready to go so that once we got started there were no real delays. So we did make up one hour and the last 12 hour drip went in at 11:30. So I should be out of here by noonish again. Maybe next time they can recall all the things we did this time and get through it even more quickly. That would be nice.
I'm definitely feeling the wear and tear of 3 months of treatment though. I am a little more on the nauseous side and much more tired than I usually am on Day 2 of a cycle. I hope that doesn't mean I'll have a particularly bad round this time. But I'm pretty sure I'll be dragging through March with a low energy level.
It started with the pre-chemo doctor visit where I got some encouraging news for a change. My tumor marker [CA125] was down to 8 from the 48 where it was at 3 months ago. 8 is the range it was in for the entire time after I finished treatment five years ago until last April when it had crept up to 17. And that number [the 8] was taken just before my last treatment so it was only after 2 full and 1 more aborted chemo treatments and prior to beginning radiation on the head tumor. That really boosted my mood. We'll keep going for the 6th round and then do another CT scan to see where things are at. I think he's planning to leave the head treament to the radiation docs and an MRI is scheduled for April 3rd for that. The MRI will give a lot more detail to help plan the cyberknife treatment, including when to do it.
I told the doctor about how frustrating the chemo treatment at the hospital was last time. He was sympathic about the delays, but I had the impression he hears that from everyone. I asked if they could access my port while I was there to save a couple hours anyway and he said they could do that. He also said he would make sure I got Zofran again, every 8 hours while I'm in the hospital. I also asked about the fact that they did not do a saline drip for hydration while giving the chemo, which was fine, just that they hadn't told me so I didn't start out drinking enough. It was such a nice day yesterday, I even asked if he could arrange for a room with a view of Mt. Rainier.
So I got checked into the hospital with my port already accessed, eager to get things started. When I go up to th 11th floor, the nurse said that Drescher had asked them to put me in a room on the south side of the building with a Mt. Rainier view. Excellent! He had also asked them to run simultaneous IV fluids. But I still had to sit around and wait ... and wait ... and wait to start chemo. The nurse came by after a couple hours and said they would be starting a second IV line for a saline drip for hydration. I didn't think that meant an IV in my hand, but that's what they meant. So when the IV lady arrived and I realized their intent I told her that at the Cancer Institute they ran the hydration line through the same infusion machine into my port. She said she wasn't sure the two should be mixed, but she'd find out. After a while the RN can back to ask if the IV had been put in so I again explained to her how it was done at the Cancer Institute. She said she would check, and sure enough, came back a 1/2 hour later saying they could do that. Then it was waiting for drugs. We finally got started at 1:00 this time! So an hour later than last time, probably due to my bitching about them wanting to put in an unnessesary 2nd IV line.
At least this time they had the drugs lined up and ready to go so that once we got started there were no real delays. So we did make up one hour and the last 12 hour drip went in at 11:30. So I should be out of here by noonish again. Maybe next time they can recall all the things we did this time and get through it even more quickly. That would be nice.
I'm definitely feeling the wear and tear of 3 months of treatment though. I am a little more on the nauseous side and much more tired than I usually am on Day 2 of a cycle. I hope that doesn't mean I'll have a particularly bad round this time. But I'm pretty sure I'll be dragging through March with a low energy level.
Tuesday, February 24, 2009
A positive and informative appointment
I saw the cyberknife doctor for an initial consult appointment this morning. I liked her and the facility alot. I thought they were nice at my usual radiation place but these guys were a step above that even. I got a tour of the machine room and found out I will get a new mask for this treatment... more comfortable so I can take the hour on the table. The table will also be padded so my back shouldn't get so achy.
But I really like the doctor. She took the time to go through all my CT scans and showed me thoroughly what the status of my disease is and the progress that has been made so far. She was very positive that the radiation was working. We will wait until April then do an MRI to get more detailed info on the current status of the tumor. They may even wait until May to do the procedure if I've had a good result from the current radiation. She showed me multiple images from the CTs that made things much clearer to me. She agreed the spleen should come out eventually. But the positive thing for me is that there is no evidence of other tumors. And the tumor in my spleen is not spreading towards my pancreous (sp?) or other more vital organs. Instead it's headed towards my ribs. Or maybe it's that it started on the abdominal wall. Anyway... I have more hope that this can be arrested for a while anyway so I feel more positive about treatment -- even the chemo -- since the tumors had shown regression even after just 2 real treatments.
But I really like the doctor. She took the time to go through all my CT scans and showed me thoroughly what the status of my disease is and the progress that has been made so far. She was very positive that the radiation was working. We will wait until April then do an MRI to get more detailed info on the current status of the tumor. They may even wait until May to do the procedure if I've had a good result from the current radiation. She showed me multiple images from the CTs that made things much clearer to me. She agreed the spleen should come out eventually. But the positive thing for me is that there is no evidence of other tumors. And the tumor in my spleen is not spreading towards my pancreous (sp?) or other more vital organs. Instead it's headed towards my ribs. Or maybe it's that it started on the abdominal wall. Anyway... I have more hope that this can be arrested for a while anyway so I feel more positive about treatment -- even the chemo -- since the tumors had shown regression even after just 2 real treatments.
Saturday, February 21, 2009
Halfway through radiation Round 2
Actually Wednesday was my halfway date. I'm now down to 8 treatments. I'm feeling pretty good overall, but I'm definitely more tired than I had been. It's probably a combination of the cumulative effect of the chemo and the radiation. I get about 8-9 hours of sleep a night and still wake up feeling tired to the bone. Even at that, though, I still have plenty of energy to get through the day so I'm not complaining at all.
I have round 5 of chemo this coming Friday, again in the hospital overnight. I'm not looking forward to radiation the Monday after because I feel like crap and that's also the day I get additional films done and meet with the doctor so I'm there and on the table for a while. I'll be done that Wednesday so I'll probably be at my worst for the next few days.
I also have my first meeting with the Cyberknife Center doctor on Tuesday the 24th. That should be interesting. KOMO tv had a segment on the cyberknife treatment last Monday because one of their anchors went through the process for a benign brain tumor. Here's a link to the story.
http://www.komonews.com/news/39688052.html?video=YHI&t=a
Should give you a good idea of what I'll be going through if it works. I hope I don't have to do TEN sessions, but I guess I'll do whatever it takes. :)
I have round 5 of chemo this coming Friday, again in the hospital overnight. I'm not looking forward to radiation the Monday after because I feel like crap and that's also the day I get additional films done and meet with the doctor so I'm there and on the table for a while. I'll be done that Wednesday so I'll probably be at my worst for the next few days.
I also have my first meeting with the Cyberknife Center doctor on Tuesday the 24th. That should be interesting. KOMO tv had a segment on the cyberknife treatment last Monday because one of their anchors went through the process for a benign brain tumor. Here's a link to the story.
http://www.komonews.com/news/39688052.html?video=YHI&t=a
Should give you a good idea of what I'll be going through if it works. I hope I don't have to do TEN sessions, but I guess I'll do whatever it takes. :)
Saturday, February 7, 2009
Home From the Hospital
I got released about 12:15 this afternoon. Things settled down after my last note last night. My itchy palm lasted about 5 minutes before it went away and all my vitals stayed good every time they were checked. It was around midnight by the time the 12 hour dose was started and I asked for ativan to help me sleep because I was a little wound up after my scare that I was going to have a reaction. That did the trick and I slept soundly until 5:30 am when I was awakened with an offer of zofran and a vitals check. Everything was still good. I thought about trying to get more sleep but I ended up staying up. I ordered breakfast as soon as the kitchen opened at 7 and Darcy arrived with a yummy latte before breakfast did at 8am. After breakfast we sat around waiting for the darn drip to run out. We took a few laps around the ward dragging my infusion machine with us. Seems like it took forever for that last 100 ML to run through. Finally at 11:45 the machine started beeping it was empty. I got unplugged, got dressed and had to wait another 15 minutes for the discharge paperwork. Then I was FREE!
I am tired [probably a lack of sleep thing] and miss having my Saturday to do my own thing on the last day I feel decent. Hopefully the next time will go a little more smoothly now that I know what to expect. If they can just get the meds lined up so we don't waste time waiting on them, that would help alot. I wonder if I could go to the Cancer Institute to get my port accessed after radiation, then I don't have to wait for the hospital to have their guy available. If we could get that 12 hour dose started by 9 or 10pm I could get a good night's sleep AND get out of there by 9 or 10 the next day. One can always hope anyway. :)
I am tired [probably a lack of sleep thing] and miss having my Saturday to do my own thing on the last day I feel decent. Hopefully the next time will go a little more smoothly now that I know what to expect. If they can just get the meds lined up so we don't waste time waiting on them, that would help alot. I wonder if I could go to the Cancer Institute to get my port accessed after radiation, then I don't have to wait for the hospital to have their guy available. If we could get that 12 hour dose started by 9 or 10pm I could get a good night's sleep AND get out of there by 9 or 10 the next day. One can always hope anyway. :)
Friday, February 6, 2009
Spending the day in the hospital
It's been a long and a bit of a frustrating day so far. We got here before nine am because we were told to just head over after radiation. Got checked in but had to wait until almost noon for the chemo to start. That was two hours for the guy to come access my port, then another hour for the premeds to get started. So it's now 5pm and I'm waiting for the carboplatin to be brought up fom the pharmacy. Darcy and Melisa were here most of the day, but both are gone now at the critical moment when they start up on the carbo.
I guess the plan is to start with 1/1000 of the dose over 1.5 hours. If that goes well, it's 1/100 of the does over the same time frame. If things are fine, 1/10th of the dose over another 1.5 hours. Finally, the remainder over 12 hours. So the original plan to be out of here in the morning is shot. If there is a lengthy delay between each dose they probably won't start that last 12 hour session until very late tonight. That gets me out of here late morning at the earliest. Hopefully this works. When I had my somewhat mild reaction, the total dose was going in at a 1/2 hour rate. So from 30 minutes to 18 hours for that portion of the infusion.
I'll probably update later to let you know how things are going. Unless there is a major issue.
11:00pm update
Things have been going fine. I'm just getting ready to settle down for some sleep, I hope, when the last dose gets started. And just as I started this post, my left palm has started itching. I hope that isn't a sign of things to come. They have given me nothing for reactions since noon. No more decadron, no more benedryl, nothing for nausea. I had to have Darcy fetch my zofran from the car to take my prescribed oral dose. It's let up a little, but I will tell the nurse about it when she comes in the change the bag.
Wish me luck...
I guess the plan is to start with 1/1000 of the dose over 1.5 hours. If that goes well, it's 1/100 of the does over the same time frame. If things are fine, 1/10th of the dose over another 1.5 hours. Finally, the remainder over 12 hours. So the original plan to be out of here in the morning is shot. If there is a lengthy delay between each dose they probably won't start that last 12 hour session until very late tonight. That gets me out of here late morning at the earliest. Hopefully this works. When I had my somewhat mild reaction, the total dose was going in at a 1/2 hour rate. So from 30 minutes to 18 hours for that portion of the infusion.
I'll probably update later to let you know how things are going. Unless there is a major issue.
11:00pm update
Things have been going fine. I'm just getting ready to settle down for some sleep, I hope, when the last dose gets started. And just as I started this post, my left palm has started itching. I hope that isn't a sign of things to come. They have given me nothing for reactions since noon. No more decadron, no more benedryl, nothing for nausea. I had to have Darcy fetch my zofran from the car to take my prescribed oral dose. It's let up a little, but I will tell the nurse about it when she comes in the change the bag.
Wish me luck...
Wednesday, February 4, 2009
Oncologist Visit
I got the CT results for my abodomen and it's a bit mixed. The tumors have shrunk, just not as much as he was hoping. Although I had only had 2 rounds of the chemo and a partial 3rd round so it hadn't had much time to work. There were no new tumors other than the one in my head, and that one isn't actually "new", it just wasn't looked for until I complained about it. So he was worried that that one had grown while I was doing treatment. I don't necessarily think it was growing. Who can really say since the first scan of it didn't happen until 1/26/09. The other possibility is that it's location is such that it's not getting a good shot of chemo. Radiation should help with that though.
Anyway, because he's not satisfied with the rate of shrinkage of the other tumors, he wants to add hormone therapy to the treatment. So I will start tomoxifan now and alternate that monthly with megace. From prior reading on the subject, I know that those are typically last line of defense paliative treatments. But I've never heard of giving it at the same time as you're getting chemo. He has never used the words "paliative" with me. That essentially means "making you comfortable for as long as we can" ie... no cures or likely even remissions. You would think he would say so if that were the case. And at the time I am in the office, I was so relieved to hear that the tumors were not "stable", but were at least shrinking and that there was nothing in my lungs or liver, I just wanted to hang onto that little bit of good news.
So chemo will continue and I will be admitted to the hospital on Friday and will spend the night there Friday night. He said I should be released on Saturday morning. Hope insurance covers a hospital stay for chemo.
I had my first zapping this morning as well. That went well. Darcy came in and got a picture of me bolted to the table so I'll post that this evening.
Anyway, because he's not satisfied with the rate of shrinkage of the other tumors, he wants to add hormone therapy to the treatment. So I will start tomoxifan now and alternate that monthly with megace. From prior reading on the subject, I know that those are typically last line of defense paliative treatments. But I've never heard of giving it at the same time as you're getting chemo. He has never used the words "paliative" with me. That essentially means "making you comfortable for as long as we can" ie... no cures or likely even remissions. You would think he would say so if that were the case. And at the time I am in the office, I was so relieved to hear that the tumors were not "stable", but were at least shrinking and that there was nothing in my lungs or liver, I just wanted to hang onto that little bit of good news.
So chemo will continue and I will be admitted to the hospital on Friday and will spend the night there Friday night. He said I should be released on Saturday morning. Hope insurance covers a hospital stay for chemo.
I had my first zapping this morning as well. That went well. Darcy came in and got a picture of me bolted to the table so I'll post that this evening.
Tuesday, February 3, 2009
Radiation Mask Photos
As promised, here's a couple pictures of the form fitting mask for radiation. You can see some of the field they will be radiating. I'll be getting 3 zaps per session this time. Two from different angles on the right side and one from the left side shooting up.
I had my "dry run" appointment today and had to be in the mask for about a 1/2 hour. It wasn't too bad though because the techs were in the room for most of it and I could actually peep out a bit this time. The sessions themselves will be much shorter. They are working on cutting out a section around my mouth [hence the scissors]
I meet with the oncologist tomorrow at 8:30 so we'll see what the chemo plan is at this point and get the update on what the CT scan showed for the spleen tumor. I'm not expecting great news on that front. Probably because I have not gotten good news at any point since November. I've become cynical about the whole thing.
I had my "dry run" appointment today and had to be in the mask for about a 1/2 hour. It wasn't too bad though because the techs were in the room for most of it and I could actually peep out a bit this time. The sessions themselves will be much shorter. They are working on cutting out a section around my mouth [hence the scissors]
I meet with the oncologist tomorrow at 8:30 so we'll see what the chemo plan is at this point and get the update on what the CT scan showed for the spleen tumor. I'm not expecting great news on that front. Probably because I have not gotten good news at any point since November. I've become cynical about the whole thing.
Wednesday, January 28, 2009
Getting my mesh mask
I had my radiation set up appointment this afternoon. That was a very interesting process fitting the mask. First they positioned my head on this little block thing. Then I had to stay very still... no speaking even. I could only say uh-uh and unh-unh. That's hard when you've got your eyes closed and they're running you in and out of the CT machine.
Then when they have you positioned, they pull out this hot piece of "cloth" and pull it over your face. It opens up into mesh as they stretch it so there are lots of air holes to breathe through. Then they tuck in in tight around your eyes and nose and put a cold towel on it so that it hardens up in that position. Then they bolt it to the table and run you in and out of the machine again to see if they have you where they want you. I didn't mind the snug fit and the bolting to the table, but I don't like having my eyes closed so I can't tell what's going on. They did not talk to me much so I was losing track of how long I had been in there and was getting anxious to hear something by the end. Overall it wasn't so bad.
I have my schedule set up with the first "dry run" appointment on Tuesday and then real sessions begin Wednesday morning at 7:45. I decided to go with first thing in the morning and get it out of the way. I may be a little late to court in the mornings occasionally, but once I get there I can get on with a full day. Hopefully that will work better than going in the late afternoon. My last session should be March 4th if things stay on schedule.
I was actually pretty teary most of the day. Darcy left for California on a previously scheduled trip with a friend and it didn't make sense for her to cancel just to hold my hand today. She needs a break, too, probably more than I do, so I'm glad she got to get away. But I started crying when she left and I never really got over it until I went to radiation. It was good to be DOING something about it again. And the folks there are so positive it's contageous. :) It may have helped that I took an Ativan before I went. ;)
So now we have a battle plan and I can start ticking off the treatments. I expect things to get worse before they get better again, but I'll just take it a day at a time.
I'll try to get a picture of the mesh mask and get it posted. It's kind of cool, really.
Then when they have you positioned, they pull out this hot piece of "cloth" and pull it over your face. It opens up into mesh as they stretch it so there are lots of air holes to breathe through. Then they tuck in in tight around your eyes and nose and put a cold towel on it so that it hardens up in that position. Then they bolt it to the table and run you in and out of the machine again to see if they have you where they want you. I didn't mind the snug fit and the bolting to the table, but I don't like having my eyes closed so I can't tell what's going on. They did not talk to me much so I was losing track of how long I had been in there and was getting anxious to hear something by the end. Overall it wasn't so bad.
I have my schedule set up with the first "dry run" appointment on Tuesday and then real sessions begin Wednesday morning at 7:45. I decided to go with first thing in the morning and get it out of the way. I may be a little late to court in the mornings occasionally, but once I get there I can get on with a full day. Hopefully that will work better than going in the late afternoon. My last session should be March 4th if things stay on schedule.
I was actually pretty teary most of the day. Darcy left for California on a previously scheduled trip with a friend and it didn't make sense for her to cancel just to hold my hand today. She needs a break, too, probably more than I do, so I'm glad she got to get away. But I started crying when she left and I never really got over it until I went to radiation. It was good to be DOING something about it again. And the folks there are so positive it's contageous. :) It may have helped that I took an Ativan before I went. ;)
So now we have a battle plan and I can start ticking off the treatments. I expect things to get worse before they get better again, but I'll just take it a day at a time.
I'll try to get a picture of the mesh mask and get it posted. It's kind of cool, really.
Tuesday, January 27, 2009
CT Scan Results: Another Tumor
So that lump on the side of my head that I told them about Christmas Eve... another tumor. It's actually in the sinus bone so what I can see and feel on my temple is just like the tip of the iceberg. They already have a radiation schedule planned out that willl include 20 sessions of the same kind of machine they used last time to shrink the tumor. They will follow that with "cyberknife" surgery to destroy the remainder. I guess it's too big to just do the cyberknife. They have to be very careful to not damage the optic nerve which is very susceptible to radiation. The doc said that I really shouldn't have any side effects from the radiation given where they are hitting. But there will be an increase in swelling. I had noticed my sinuses have been much stuffier than usual the last week or two. So that should get worse and my right ear will seem stuffed up for quite a while.
Sounds like the worst part will be that to keep my head completely still during the treatment they will be fitting me with a tight plastic mesh that will be bolted in place to the table. Freaky! I'm not too claustrophobic but we'll see how that goes. They recommended taking ativan prior to the treatment. And the cyberknife procedure will be an HOUR on the table. Not to mention the 4 weeks of having to take time out in the middle of the day for treatments.
As far as the hip, sounds like that is looking fine. I think the tumor isn't completely gone, but they expected it would take a little while yet for it to completely work. He didn't really pay attention to the spleen tumor but he thought that he had read that it was "stable". In other words, it's not shrinking, but it hasn't gotten bigger either. The nurse said she thought that they may suspend the chemo while they do the radiation treatments... at least if the treatment involved the brain. I'm not sure that they intend to actually radiate my brain... at least not intentionally. The tumor is in the bone again.
Anyway, I don't think my oncologist has seen the films yet. I am scheduled to meet with him on the 4th but I wouldn't be surprised if he moved that up to discuss the scan results and the updated treatment plan.
I am kind of pissed off that it seems like he hasn't treated this as aggressively as he could have. I don't really understand WHY he didn't get complete CT scans done back in November after the recurrence was discovered. If tumors were found in my hip and spleen, it would seem plausible that they would be elsewhere as well... like in my head. And maybe that would be someplace that could be treated with radiation... like we're doing now. And maybe only the cyberknife would have been needed then.
Sounds like the worst part will be that to keep my head completely still during the treatment they will be fitting me with a tight plastic mesh that will be bolted in place to the table. Freaky! I'm not too claustrophobic but we'll see how that goes. They recommended taking ativan prior to the treatment. And the cyberknife procedure will be an HOUR on the table. Not to mention the 4 weeks of having to take time out in the middle of the day for treatments.
As far as the hip, sounds like that is looking fine. I think the tumor isn't completely gone, but they expected it would take a little while yet for it to completely work. He didn't really pay attention to the spleen tumor but he thought that he had read that it was "stable". In other words, it's not shrinking, but it hasn't gotten bigger either. The nurse said she thought that they may suspend the chemo while they do the radiation treatments... at least if the treatment involved the brain. I'm not sure that they intend to actually radiate my brain... at least not intentionally. The tumor is in the bone again.
Anyway, I don't think my oncologist has seen the films yet. I am scheduled to meet with him on the 4th but I wouldn't be surprised if he moved that up to discuss the scan results and the updated treatment plan.
I am kind of pissed off that it seems like he hasn't treated this as aggressively as he could have. I don't really understand WHY he didn't get complete CT scans done back in November after the recurrence was discovered. If tumors were found in my hip and spleen, it would seem plausible that they would be elsewhere as well... like in my head. And maybe that would be someplace that could be treated with radiation... like we're doing now. And maybe only the cyberknife would have been needed then.
CT scan yesterday
I had my updated CT scan yesterday that included the chest and head this time so we should have a more thorough look at where things are at. The lump on my head seems to have gone down a little bit, but it may just be that I'm getting used to it. They gave me a CD of the films to take to the radiation oncologist, whom I see today, so that that he can take a look to see how the hip tumor is doing. If symptoms are any indication, it should be fine. I am completely symptom free in that leg. I did go for a walk around Seward Park Saturday and had a bit of achiness that night but it was gone the next day. That could just be from the bone still healing I expect. I don't know if he will discuss anything about the head or the spleen tumor with me or if I'll have to wait to hear from the oncologist next week.
I'll keep you all posted...
BTW, I had to take 3 doses of Predisone prior to yesterday's test because of my slight reaction to the comtrast dye last time. It wasn't as bad as the dexamethsone I take for chemo, but I do have the steroid face flush today and feel a little crappy. *sigh* I hate that stuff!
I'll keep you all posted...
BTW, I had to take 3 doses of Predisone prior to yesterday's test because of my slight reaction to the comtrast dye last time. It wasn't as bad as the dexamethsone I take for chemo, but I do have the steroid face flush today and feel a little crappy. *sigh* I hate that stuff!
Monday, January 19, 2009
Change in Treatment Plans
I got a call from the oncologist's office today checking on how I was doing after my allergic reaction to the Carbo on Friday. She said that the doctor will likely change the chemo plan depending on the results of the CT scans the 26th. If the current combo was working they will put me in the hospital for 2 days for the next round to desensitize me to the Carbo. Sounds kindof scary, but better than having to quit something that is working. Still up in the air as far as what would be tried if this is not working.
So I meet with him on February 4th to discuss the next step. I wish they hadn't called today. Now I'm gonna be worrying about this until the 4th.
So I meet with him on February 4th to discuss the next step. I wish they hadn't called today. Now I'm gonna be worrying about this until the 4th.
Friday, January 16, 2009
Long Day of Chemo Today
It started with them not having me on the list to get treatment today. Fortunately we had shown up about 30 minutes early so it got straightened out and we actually got started a little early.
Everything went well through the Taxol. I think she was running the infusion rate a little slower than my last nurse did so it seemed like it took longer. We finally got the Carbo going about 3:15. That's a 30 minute infusion so I should have been done at 3:45. Darcy left just before they started to pick up my anti-nausea med from Group Health. About 15 minutes into the infusion I started to feel kind of funny. My right ear felt itchy inside, then my eyes felt a little ichy. I started feeling flushed and then my palms really started itching. I called for the nurse and told her what happened and 6 nurses came in an started me on oxygen, put a bunch more monitors on me and called my oncologist. He ordered the carbo stopped and ordered more benadryl, steroids and ativan. My heart rate got up to 133 beats per minute and my blood pressure went up to 138/110. After the steroids, things dropped back closer to normal for me. Soooo -- I didn't get out of there until almost 5pm.
So I think I'm done with the Carbo. I have no idea what he'll try next, but that's a little scary. I guess sometimes they will put you in the hospital and desensitize you to carbo, then continue with it, so I guess I can't rule that out entirely. She also said I may have a pretty good post chemo week given the lack of the full dose of carbo. Lets hope there is that one silver lining out of this.
Tha worst part was that we had planned having friends over for dinner at 4pm and we had to postpone. :(
Everything went well through the Taxol. I think she was running the infusion rate a little slower than my last nurse did so it seemed like it took longer. We finally got the Carbo going about 3:15. That's a 30 minute infusion so I should have been done at 3:45. Darcy left just before they started to pick up my anti-nausea med from Group Health. About 15 minutes into the infusion I started to feel kind of funny. My right ear felt itchy inside, then my eyes felt a little ichy. I started feeling flushed and then my palms really started itching. I called for the nurse and told her what happened and 6 nurses came in an started me on oxygen, put a bunch more monitors on me and called my oncologist. He ordered the carbo stopped and ordered more benadryl, steroids and ativan. My heart rate got up to 133 beats per minute and my blood pressure went up to 138/110. After the steroids, things dropped back closer to normal for me. Soooo -- I didn't get out of there until almost 5pm.
So I think I'm done with the Carbo. I have no idea what he'll try next, but that's a little scary. I guess sometimes they will put you in the hospital and desensitize you to carbo, then continue with it, so I guess I can't rule that out entirely. She also said I may have a pretty good post chemo week given the lack of the full dose of carbo. Lets hope there is that one silver lining out of this.
Tha worst part was that we had planned having friends over for dinner at 4pm and we had to postpone. :(
Thursday, January 15, 2009
Round #3: Pre-chemo doctor visit
I saw my oncologist yesterday for the pre-chemo appointment and got a few questions answered. He told me why he ultimately opted not to take out my spleen. He said that since the most pressing problem was the hip tumor they wanted to get that addressed first and surgery would have made that more difficult. He also said that since I'm doing chemo there is some hope that that will put me into remission on its own and I then would not need surgery at all. Finally, he said that I can always have the surgery.
He also set up a CT scan on January 26th to check the progress of the treatment so far. I guess any earlier would not have given the chemo and radiation a chance to do its work. So that will be good to know. For now, the plan is the usual 6 rounds of treatment, like I did last time. Which means that I will be halfway through after this round. Yay! But I guess that will change if the disease has progressed further instead of shrinking or going into remission.
As far as the lump on my head, it was apparent that he had NOT been told about that concern. That kindof upset me. He did feel around on it and said that it didn't seem to be a related tumor because it was smooth and uniform. He also said that it isn't in the sub-cutaneous layer, but seem to be down in the layer that covers the skull. So he doesn't plan anything for now, but since I'll be in for a CT scan on the 26th, they will include a head scan if the thing is still there [which I suspect it will be since it's been there for a month that I know of]. So this will be a scan from my pelvis to the top of my head. Finally a full picture of what's going on. You can bet I'll be nervous waiting for those results.
Darcy cut my hair again last night because it was looking pretty ragged after some grow out after the cut with that crappy set of clippers. I got a better set of clippers and they did a good job, but the longest comb [used to set the length of the cut] was only 3/8". I would swear it was shorter than that, too. At least when this grows out it will be more uniform. (what I manage to keep on my head, anyway)
He also set up a CT scan on January 26th to check the progress of the treatment so far. I guess any earlier would not have given the chemo and radiation a chance to do its work. So that will be good to know. For now, the plan is the usual 6 rounds of treatment, like I did last time. Which means that I will be halfway through after this round. Yay! But I guess that will change if the disease has progressed further instead of shrinking or going into remission.
As far as the lump on my head, it was apparent that he had NOT been told about that concern. That kindof upset me. He did feel around on it and said that it didn't seem to be a related tumor because it was smooth and uniform. He also said that it isn't in the sub-cutaneous layer, but seem to be down in the layer that covers the skull. So he doesn't plan anything for now, but since I'll be in for a CT scan on the 26th, they will include a head scan if the thing is still there [which I suspect it will be since it's been there for a month that I know of]. So this will be a scan from my pelvis to the top of my head. Finally a full picture of what's going on. You can bet I'll be nervous waiting for those results.
Darcy cut my hair again last night because it was looking pretty ragged after some grow out after the cut with that crappy set of clippers. I got a better set of clippers and they did a good job, but the longest comb [used to set the length of the cut] was only 3/8". I would swear it was shorter than that, too. At least when this grows out it will be more uniform. (what I manage to keep on my head, anyway)
Saturday, January 3, 2009
Feeling pretty good
I have to say, at the risk of jinxing things, this last chemo round went better than any of the priors, including the 2003-4 set. I never really felt as sick, and had less joint pain than I usually do, I had energy for more days into it and then haven't crashed energy-wise, even after I started feeling better. I was tired Day 6, but not like I used to be and by Thursday, I was feeling pretty good. I worked from 7:30 to 5:00 yesterday and still had energy at the end of the day. I didn't crash into bed at 7:30-8:00 like I did last time around. Amazing. This morning I feel like I could do my old 2.5 mile walk around Seward Park. In fact, I may go for a partial walk around the park today. I miss going there in the mornings.
I wish I could pinpoint what it was that helped but I can think of a combination of factors. I think the L-Glutamine has helped alot. I also drank plenty of water without overdoing it. Radiation was finished, although the fatigue from that should be more pronounced now than it was in December. Putting Icy Hot on my joints did help. Maybe the biggest thing though was having Ativan and Ambien to help with sleep. It worked really well one night and then at least gave me some rest another two nights. Being more rested gave me more energy and allowed me to be more active, which may have helped work the chemo through my system. I was also having alot of hip pain last time and being in pain can sap your energy as well. My hip is doing so well I feel like getting out and walking to test it out. :)
I did finally blister right in the crease of my leg/groin from the radiation. I wasn't expecting that this far after finishing. It hasn't been too bad because there is not alot of rubbing going on there. Once I figured out what was going on, it's been better and seems to be healing.
Overall, I'm feeling more positive about things today.
Update:
My brother was visiting from Spokane this weekend and had shaved his head in solidarity with me. Here's a pic of the two of us with nearly matching heads.
I wish I could pinpoint what it was that helped but I can think of a combination of factors. I think the L-Glutamine has helped alot. I also drank plenty of water without overdoing it. Radiation was finished, although the fatigue from that should be more pronounced now than it was in December. Putting Icy Hot on my joints did help. Maybe the biggest thing though was having Ativan and Ambien to help with sleep. It worked really well one night and then at least gave me some rest another two nights. Being more rested gave me more energy and allowed me to be more active, which may have helped work the chemo through my system. I was also having alot of hip pain last time and being in pain can sap your energy as well. My hip is doing so well I feel like getting out and walking to test it out. :)
I did finally blister right in the crease of my leg/groin from the radiation. I wasn't expecting that this far after finishing. It hasn't been too bad because there is not alot of rubbing going on there. Once I figured out what was going on, it's been better and seems to be healing.
Overall, I'm feeling more positive about things today.
Update:
My brother was visiting from Spokane this weekend and had shaved his head in solidarity with me. Here's a pic of the two of us with nearly matching heads.
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