Showing posts with label Lupron. Show all posts
Showing posts with label Lupron. Show all posts

Wednesday, June 4, 2008

May 27 and thereafter: Cycling off

SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); side pain (2); tired; problems with mobility due to the groin pain; problem with finding a comfortable way to sleep because of the groin pain.

As far as I can tell, I have cycled off Lupron. In the past week, I have had no headaches, maybe one hot flash. Except for being tired and the familiar pain, I'm back to what life was before I started the shots. I'm thankful that cycling off has not been bad considering what so many others went through.

I wish everyone else well on their journey with Lupron. I know it has the capacity to help some people, though I was not one of them. I hope the chronology of my own treatment can serve as a benchmark, regardless of the success of your treatment.


That being said, if you are a classical singer, I would never recommend this treatment to you. You are at great risk of changing your voice and the downtime is severe. It was nearly impossible to perform and my entire voice shifted more than by fach and category. I'm still waiting to see what the long term effects are vocally. Again, I specify that this warning would be for classical singers. MT/Broadway, pop, etc use mikes and would not be as affected.

Tuesday, May 20, 2008

May 19: The lesser of the evils

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (2); headaches (2); very tired; lack of focus; increased hot flashes/night sweats; problems with sleep.

My energy levels are better though I find that I tire easily. I at least have bursts of energy in which I can get things done. Driving is much easier. Running a vacuum cleaner and other household chores are now possible. I don't know if I was turning a corner on the Lupron, if it is the Lo-Estrin, or if it the cycling off, but day-to-day things are getting better. I'm getting back to pre-Lupron state, which I never thought was a blessing before, but it sure looks like a better place to be now.

My throat is very swollen today and my voice hates me. Good thing there is no concert today! I'm trying to do as little phonating as possible. My larynx feels like a Mac truck in there.

The groin pain and lack of sleep is what it is: nothing new.

Monday, May 19, 2008

May 18: Lupron and HRT Reimbursement

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); headaches (4); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.

The performance was fine though between the dress and the performance I went through 30 minutes of chaos in my lower register (chords not approximating). I don't know if it was the Fioricet that threw my voice off (the headaches started coming on so I had to take a half dose to keep it at bay) or what. Fioricet has caffeine, which is tough on the chords. After steaming, it worked itself out, thankfully.

I wanted to share a rebate for Lupron and HRT I found online. I saw this on someone else's blog and thought I would get the word out here as well. https://www.endofacts.com/register/rebate.aspx

This will be especially helpful for those of you who have to pay out-of-pocket. This drug is not cheap. I am hoping it can help cover my partial payment as well.

Sunday, May 18, 2008

May 17: Bone tired

SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.

I had a rehearsal today and was so tired. All I wanted to do before and after was to sleep. The piece I am doing is physically taxing, but isn't especially long. It probably would not feel quite so taxing if I weren't so tired otherwise, though it does deal with the extremes in range.

I've noticed an increase in hot flashes, sometimes several an hour. When I am sleeping something else is waking me and then about 30-60 second the hot flash sets in. I know some women feel that the actually sweating wakes them. For me, it is whatever is happening prior... a bad dream, some other chemical trigger, that is doing the waking.

I started back on the Lo Estrin on Friday, so we will see how it all goes. Hoping for the best.

Saturday, May 17, 2008

May 16: Back in the saddle

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

Today I cooked a four-course meal for the first time in months. I've missed cooking. It's something I enjoyed for years and this past year, cooking has been markedly absent. It was nice to have a little energy to stand and create.

I slept horribly again last night, with vivid nightmares, interrupted sleep, etc. Groin pain is worse at night, as it always has been. It's very difficult to find a comfortable position to sleep in.

My doc advised me to start my bcp again so I am back to the Lo-Estrin. Should be interesting to see what happens as my body takes time to process through the Lupron and the intake of the Lo-Estrin.

Thursday, May 15, 2008

May 15: Aging beyond my years

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I am so tired I am about to fall asleep this second. I cannot believe how exhausted I continue to be. That being said, I made it to the grocery store and actually carried about 25 lbs of groceries by myself. This is the first time in weeks and weeks I have been able to do that.

I watched myself on TV tonight and could not believe how much I have changed. I looked old, frail and emaciated - not in the anorexic sense but in a malnourished sense. I know they shot me early in the morning, but still... I looked awful.

Last night I barely slept. I woke at 4.30a and worked; I napped later. Now I find I can barely stay awake so perhaps I will sleep.

Wednesday, May 14, 2008

May 14: Not out of the woods

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

If yesterday taught me anything, it's that the side effects (whether it be estrogen loss or Lupron) can come back at any given time, regardless of the number of manageable days you have. Yesterday was a beast. The pain in my head was close to unbearable.

I woke up early and tired this morning, with a headache. I made it through the interview no problem. I was just exhausted. I had wanted to crash as soon as I got home, but it didn't happen. Hoping for sleep tonight.

Tuesday, May 13, 2008

May 13: I know my pulse because I can feel it in my head

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin pain (pain rating 6); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I'll write more later but right now I have one of the worst migraines going on. And I have a rehearsal in two hours. Lovely.

=============
Tonight was a living hell for a couple of hours. My headache started in the morning and I was hoping it would go away. By the afternoon, it was excruciating. Any note I would try to sing left me reeling. This with a rehearsal looming large. The work that I am performing this weekend is very high and very loud. It takes a lot of strength and it is a bit of a work out. In desperation, I took a half dosage of the Fioricet. It cut the headache to manageable and I wasn't a complete space cadet, though a flubbed a couple of passages. I was very tired by the end.

Tomorrow I have to be up early for a TV interview. I just want to sleep.

Monday, May 12, 2008

May 12: Where is my brain?

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 6); lower back pain (4); side pain (5); fleeting, needle-like pain in shins; exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.

I am very forgetful today. For two hours, I could not think of my nephew's name. Today was early-ish day in any case and I am generally fuzzy/tired on those days, but this was worse. And I am having a hard time finding a position to sleep in comfortably again.

Wednesday would be my third shot. But I am not going down that road any more. Now I'll be writing about cycling off, which i hope won't be quite so bad.

Sunday, May 11, 2008

May 10: Old Faithful

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); ovarian pain (4); lower back pain (4); leg pain (3); pain on left side (2); hot flashes/night sweats; problems with sleep; nightmares.

I practiced today. I'm about a week out from a regional premiere and realized how far behind I am. But my voice, if it holds, will be fine. It's in a good place right now for this work.

I slept for a long time last night, but was interrupted by half a dozen nightmares. These dreams seem so vivid and true. Some of them in recent days are about people I haven't thought about in years and others involve my current cast of characters. All the nightmares involve my worst fears... I guess all nightmares do. They are just so incredibly vivid. Though I have always remembered my dreams, these seem so real that when I wake I can barely separate them from reality. Strange.

I did not get to walk today, but I managed to carry some things to the car and the dumpster. I did some housework.

I think this week has been better, all in all, but I keep going back to the same question. Did the Lupron help what it was originally supposed to help? The answer is no. It's my understanding that I would have seen improvement by now, yet even as I type, I feel the familiar knife-like pain in my groin.

Friday, May 9, 2008

May 9: Functional and Pensive

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (3); pain on right side (2); lower ab muscles weak; hot flashes/night sweats; problems with sleep.

I drove today. In a major city. And got very lost.

None of that I can attribute to estrogen loss. Rather, I blame Google Maps.

But I was able to carry on a nice conversation for two hours and made it back home. Tonight I was able to walk 4 blocks to a favorite restaurant. The walk back was easier... after drinking a lot of wine. :-)

I'm very tired though.

I received a nice mention in the daily paper regarding the Yom HaShoah service I did last week, which was completely unexpected. Very sweet.

Turn that 180 degrees and I find myself regarding some paths that I feel like are coming to an end. There's some sadness, regrets ...wondering what's next.

Beyond a full night's sleep, I'm not sure.

Thursday, May 8, 2008

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (3); pain on right side (2); lower ab muscles weak; hot flashes/night sweats; problems with sleep.

Ironically, the problems today are mostly the problems I sought help for in the beginning... this damn groin pain, the lack of sleep, the reduced mobility.

Today was not so bad with everything else. I walked 11 blocks west and 5 blocks north, both ways. I did get very tired trying to push a shopping cart today.

I'm exhausted right now while listening to a Rent soundtrack. How funny to me I've never seen this show. I'm in my own little classical world, which is a world apart from Broadway.

Sorry that I am not very verbose tonight. I have to wake up very early tomorrow.

Tuesday, May 6, 2008

May 5: What are my choices

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 5); left groin pain (pain rating 4); ovarian pain (2); lower back pain (4); leg pain (5); pain on right side (4); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

My headaches started coming back today so I headed it off with the Fioricet. I halved the dosage to see what would happen; could it stave off the headache and then I remain functional? I did okay. It didn't completely take away the headache and I wasn't as dizzy. So this is better. I'm hoping it's something I can fall back on if needed.

The weather was okay today where I am so I got out and walked a little. I'm still having a lot of pain my torso and down my left leg into the shin. It's not easy to walk; I don't always feel up to it, but if I can walk down the block, it's better than nothing.

I forgot to mention last night at the concert, I forgot everyone's names. These are people I know well and for several years. Strange.

I really don't think I can tolerate the Lupron for a third shot. Unless something dramatically changes over the next week, I'm going to cycle off. The journey has been to costly... personally, financially, professionally. I feel as though it has impacted very aspect of my life. I don't think it has helped anything and made everything much worse. Very frustrating!

Monday, May 5, 2008

May 4: More

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 6); ovarian pain (6); lower back pain (6); leg pain (5); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

Today the groin pain and the ovarian pain was as bad as it has ever been. It did seem to respond to a high dose of Ibuprofen, but I felt shaky. I don't understand why the Lupron is not at least taking care of that.

On the bright side, once I got the pain under control, I was able to take a walk for about half a mile and listen to a concert. The concert was harder than the walk. I'm going to try really hard to walk a little everyday and try to build some strength. My appetite is horrible though. I don't have any fresh unprocessed food and anything heavy makes me feel ill.

I am so tired right now.

Saturday, May 3, 2008

May 3: Test

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); pain on sides (2); lower back pain (6); leg pain (5); lower ab muscles weak; hot flashes/night sweats; problems with sleep; hoarseness.

Today was a big test: could I walk 1/2 miles to a bus stop; could I drive myself to an airport 2 1/2 hours away; could I drag all my luggage by myself.

Yes.

I am so lucky today ended up being okay, despite feeling really horrible last night and not sleeping well. Normally, this travel schedule would have been no big deal. I've done this a million times and many more rigorous schedules. However, pre-Lupron days are not my present Lupron reality. It took a lot of concentration to drive so far. It took a lot of strength to hoist relatively light bags onto buses, shuttles and luggage compartments above my head (I'm 5'4").

All that being said, today I was functional.

I didn't have the headaches. I did have a lot of groin, leg and back pain, which made it challenging to walk... or at least not walk like a complete gimp. I swear it look like I have a peg leg (not there's anything wrong with it).

And how old am I???

35 going on 99.

Friday, May 2, 2008

May 2: Eyes bigger than my stomach

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2 ramping now to 6); left groin pain (pain rating 4); pain on sides (6); lower back pain (6); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; problems with sleep; hoarseness; lack of focus.

So I bit off more than I could chew tonight. I often cantor Shabbat services (Reform and Conservative). I never think of it as a performance because that's not what it is. I'm giving voice to a congregation as we collect our prayers, our Psalms in song and then send them upward. Music is what takes our words to the next level... the emotional, the spiritual.

I've missed being able to cantor as much this season, especially at the shul around the corner from me. The group is a bit irreverent, a lot of fun and we regard each other with open arms and family.

But I wanted to do Yom HaShoah (Holocaust Day of Remembrance) and it happened to fall on Shabbat, which makes it very special. The music is not hard and I even asked for a mike, which normally I would never do. But I stood for such a long time. The longer I stood, the weaker I felt. My head started to pound. I began to be hoarse. Hot flashes, etc. This week, we didn't have accompaniment for the normal Shabbat tunes, only for the special music for Yom HaShoah. I was feeling very naked and so ill.

But the congregation got me through it with their genuine love and support. They were so happy to see me. Though I am lying here in bed now feeling like I was runover by a truck, I know in my heart that no one scrutinizes me there. We are there because the union of music and spirituality brings us together. In fact, it reminds us that there are so many things larger than ourselves.

Thursday, May 1, 2008

May 1: What now?

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; problems with sleep; lack of focus.

I noticed looking at last month around two weeks after the first shot there was a reprieve and I am wondering if I am in the same cycle. Today was pretty decent comparatively. Just wondering if the bad stuff will come back.

What I do know, though I thought it was diminishing, the groin pain has not gone. That was the whole reason I did this shot... as a diagnostic. I was told by a surgeon in Miami that I would have my answer after the flare. If the groin pain was because of the endometriosis that I have, the Lupron would make it go away. If it didn't, there is something else causing the problem.

My OBGYN thought it could be adenomyosis on top of the endometriosis.

Where do I go from here?

April 30: Yes and No

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 6); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; blurred vision; lack of focus.
Today is not bad but the groin pain is still there, as is this bizarre ovulatory pain. I don't have much energy or focus, but I still perceive things as better than they had been in recent days. Though I still say I am worse off than before I started this drug.
Must sleep.

Tuesday, April 29, 2008

April 29: Don't know what you got 'till it's gone

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 8); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; blurred vision; lack of focus.

I was so tired today. Last night I had some of the sharpest groin pains I have had in a long time. Not quite sure why that would be happening and I am still getting the sense that I am having ovulatory pain. That puzzles me because I thought by now that would be impossible. Am I not in menopause yet? Isn't my ovulation completely suppressed?

So many facets of this drug regimen I just don't understand. Other than the weakness and being very, very tired, today was not that bad. So I've had a few decent days strung together. Interestingly, I feel as though one doesn't truly know one's gifts until you've had them taken away. So when I have a decent day (which is still worse than the pre-Lupron days) I feel like celebrating! Woo-hoo!

Originally I was supposed to be out of town today but I've rescheduled travel for the weekend. I hope I am feeling up to it!

Monday, April 28, 2008

April 28: The Wisdom to Know the Difference

SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on sides (4); lower back pain (4); lower ab muscles weak; hot flashes/night sweats; weakness and tiredness; reduced mobility; blurred vision; lack of focus.

Today was not too bad in terms of pain though each day is a little like the other shoe dropping. Except what dropped today was my voice... about a third. Damn, I wish I could have sung today! (only other singers will recognize the importance of this, especially given what I sang yesterday)

In any case, I am grateful that I wasn't curled up and comatose yesterday. I think I forgot to mention how I couldn't remember names last night. A fourteen-year volunteer came up to me and I could not remember his name. Nor the underwriter for last night's concert. Ugh.

I was sad today, but it was more because of personal reasons than the drug. I don't know how often one is supposed to extend second chances, but I guess when they reach the double digits, that's probably plenty.

Tonight was to be a regional premiere that I had to postpone. I'm okay with it now... disappointed but okay. My next engagement is in about three weeks... another regional premiere. I'll try not to stress; as long as I am standing it shouldn't be too difficult in terms of where it lies in my voice. I have a lot of highly focused homework to do. That's where I am lacking.

I'm reminded of these words:

God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.