Hello everyone--
I thought I'd send you an update. On Monday, Dec. 22nd I'll be getting a port put in (this time in my arm). It's half the size of the one they put in my chest (that broke). Now it should be easier for me to have IVs, blood draws, etc. Then, two days later, on Christmas Eve day, I'll be getting the second pain block. The problem is that to have these procedures, I have to go off the coumadin for five days before and three days after. When I did this with the first pain block, I had to drive to Walnut Creek for eight consecutive days for a 24-hour blood thinner shot (Arixtra), and on top of that gas expense, they charged me a $25 co-pay every time I went in. Well, this time they are ordering the shots for me and having them sent to my home as if I were going to give myself the shots. Those of you that really know me know that there is no way on God's green earth that I could EVER give MYSELF a shot. I don't mind getting them, but I just can't do it myself. Of course I will beg any of my nurse friends out there to give me the shots--any takers? I can also take it to my regular doc and have them give it to me--at least that's in Pleasanton.
Well, that's where I stand right now. Looking forward to a wonderful Christmas with my family. I hope you are too! Thanks again for the prayers--they help so much!

Hi Everyone—
I hope you all had a wonderful Thanksgiving! The surgeon evaluated my toe, and didn’t think amputation was necessary (talk about having something to be thankful for on Thanksgiving!) I had the pain block on Wed. The procedure definitely wasn’t fun, since the nurse missed (on his 3rd try) on my IV and I didn’t get any sedation drugs. So it looks like I’ll have to have another one or possibly two, since it hasn’t worked on my pain. The doc warned me that might be necessary. I see him a week from today. Meanwhile, the meds he gave me are at least getting me sleep during the night. I’ve started round 14 of Gemzar. Well, I hope this stuff is working, because now I’m starting to get neuropathy (numbness) in my fingers, lips and tip of the tongue. They haven’t said anything, but I think I’m going to have a scan after this round (end of the month). I’ll let you know when I get an actual date. Please keep up the prayers. I feel them and know they are working!

Hi Everyone—
Well, I went to see the pain specialist and he was awesome! He was the first doc that actually was able to give me pain meds orally that took away the pain!! I am not out of the woods with this toe, though. He would like to do a pain block (possibly the first of three) on me on Wednesday, but before he does it he wants me to have the toe evaluated by yet another surgery, to make sure the toe is salvageable. Even though it has already been evaluated by my regular doc, my oncologist, a rheumatologist and a vascular surgeon, he’s still not sure I won’t need an amputation of the toe. So your prayers are really needed here. Of course I don’t want to lose my toe! If all goes well with the evaluation on Tuesday, then we will proceed with the pain block on Wed. Thanks so very much for your support in thoughts and prayers! Have a wonderful Thanksgiving, everyone! We all have a lot to be thankful for!

Well I thought I’d bring you all up-to-date on where I’m at right now, since being in the hospital. I went for a follow-up at the cardiologist, and had a normal rhythm EKG. They were very pleased and don’t need to see me back for six weeks; just before Christmas. I also saw the vascular surgeon, and both agree that now that my heart is on the mend, my toes should be too. They say that there are little “embolic” clots in the very tip of my toes, stemming from the heart problem, which is stemming from chemo. Of course all roads lead back to chemo. In the meantime, I’ve been in excruciating pain with the toes. My oncology nurse practitioner said she couldn’t stand seeing me in such pain, and gave me liquid morphine to get through the nights until these toes clear up. Thanks to my good friend Dr. Tom, I’ve been hooked up with a pain specialist. I have to wait until Thursday to see him. I’m hoping he can help—I’m sure he can. Thanks, Tom! The good news is I took the liquid morphine last night and it got me through without any help from the Lidocaine creams & patches I’ve been using. I even got through the entire day today teaching and didn’t need to use any Lidocaine, so maybe it is starting to get better. It’s very hard to walk on because the big toe is blistered all over from all the pain meds I’ve used on it. Please do keep me (and my toes) in your prayers for a quick resolution. I was able to get back on my chemo regimen yesterday. Thank you for all the wonderful emails I’ve been getting from all of you. They really help.

Hi everyone--
Well, I'm home. It was interesting. I went to the ER and my heart rate was 167. They kept giving me IV meds to bring it down, but it would only go down for a little while and then it would go back up. It stayed high all weekend. After two IVs gone bad (the meds leaked into my arms), both of my arms are red, swollen and extremely sore. My veins are shot from chemo. They did another echo and this time it showed my heart function was basically normal! They didn't know if things had changed or if the other echo I had at ValleyCare was just wrong. Finally yesterday morning (Monday) they put me under for a few minutes and shocked my heart back into a normal rhythm. Now I just need to keep it that way. They're calling it an "atrial flutter." I feel much better now, but still weak. I have the best of intentions to return to school tomorrow, but will see how I feel. After all, I still have Halloween candy to give out to my students!! I cannot get over all the wonderful emails you have sent. Please know that your prayers are getting me through all of this and I truly appreciate them!

Well, I saw the cardiologist on Friday, he wasn’t much help. He changed some medications, can’t figure out what’s wrong with my foot or why my heart function is low. His best guess was the chemo or the radiation to the chest. He wants me to have a nuclear stress test, which is scheduled for Friday, and then come back for a follow-up. I was pretty fed up, so I called my oncologist. He thinks I may have a virus (since I’ve had a fever) that is really kicking my behind, so he prescribed a six-day steroid. I do feel a bit better. I actually started feeling better Saturday morning before I started them. If things continue this way I’m hoping to be in school tomorrow. I’m still moving slowly and out of breath, but I definitely feel better. I hope to go back to chemo on Thursday. Thank you for keeping me in your thoughts and prayers. It really gets me through.

Well, so much has happened, and yet so little. It took all day to get ahold of the cardiologist, and now I’m going to see him in the morning. For some reason, I had a fever today, so now the oncologist thinks I probably have a bug and that’s why I’m so weak. They changed my antibiotic to something super strong. Then they called back and said they read my labs a second time and realized my sodium was extremely low (to the point where most people would be hospitalized), and that I need to cut my fluids way back to a liter and a half a day--so much for “flushing out the bug.” My heart rate was quite high yesterday in the hospital, so they put me on something to bring it down. It seems to be working. We decided to hold off on chemo this week and start round 13 next week. I know it’s confusing. I’ll update after I see the cardiologist and maybe I’ll have some answers. Thanks for the prayers, everyone!

Hi everyone--
Well, I've been in the ER all day. I'm home now. I wouldn't let them keep me in that jail overnight. There is something wrong wtih my heart. It's functioning at 45%. I guess that's probably why my toes are blue. I'm seeing a cardiologist tomorrow. Supposed to have chemo too, but I'm not sure that's going to happen. They did bloodwork, a chest x-ray, a CT angiogram, an echocardiogram and an EKG (all today). They want me home from work this week, but I plan to be back Monday. I hate being at home and miss my students. Please keep the prayers going--they are what gets me through all of this. Thanks so much everyone.

Hi everyone--
I thought I'd update you, since it's been a while. I just finished round 12 of chemo. I became a little anemic this last round again, so I got my Aranesp shot and now some of the tiredness is getting better. The last few weeks I've been exhausted. I'm not sure if my next scan will be after round 13 or round 14.
I still don't have any resolution with my toes. The angiogram also showed no significant circulation problems, and yet my toes are still blue, cold, numb and painful. Now they want to do an echocardiogram. I've been seeing doctor after doctor for over five weeks now and no one can figure it out. I'm a little worried because I've noticed the toenails on that foot are not even growing, and yet I get no reaction from the doctors when I tell them that. I'm thinking about acupuncture for the pain. I'm just saying my prayers and trusting I will have an answer sometime soon. Thank you so much for keeping me in your thoughts and prayers!

Results

Hallelujah my CT scan came back with everything remaining stable! We’re coming from the last PET/CT showing growth, so that means things have stopped growing and we’re hoping the next scan shows reversal/shrinkage. There was no new growth, and that’s always what I pray for. I will continue with chemo (Gemzar) round 12 starting tomorrow. There is still some fluid in my left lung (Gemzar is a known fluid-maker) and my oncologist and surgeon are getting together to make a plan for that. Everything is good around my heart again, so the CT scan was pretty much good all the way around.
The ultrasound results came in showing no clots, but they will be doing a further vein study because of my puny veins (injecting the dye into the veins for the study). That should just be a BLAST. The pain is still keeping me up, but last night was a little better. I’m thinking at some point I’m just going to collapse from sleep deprivation, but so far I’m still going like the “Energizer bunny.” I will be home from school today, seeing the Rheumatologist about my foot, so hopefully I’ll get some relief soon.
Still waiting for the voice to heal… Thanks so much for the prayers & support everyone. They really do keep me going!

scan tomorrow

Hi everyone--
Well, it's been a little tough these past few weeks. I thought my voice was healing, but it's not. It's still the same, and it gets me down sometimes. On top of that, something has happened with my right foot. I already had neuropathy (numbness) in my feet, but now my big toe (and the other toes on that foot) are turning blue and cold. I don't have Diabetes or anything. The pain has kept me sleeping 2-3 hours max for the past two weeks. I've gone in for four different doctor's appointments and they can't really figure it out. I've tried absolutely everything for the pain (including Darvaset and Vicodin) and nothing does a bit of good. It's tolerable during the day, but I'm literally screaming from the pain at night. They did an ultrasound on my legs/feet on Friday and we should have the results tomorrow. The tech did go so far as to say there were no clots or anything that showed as needing immediate attention--just very puny veins, so that made me feel a little better while I wait the weekend. So far they think it is something called Raynaud's Phenomenon, where the little capillaries give off spasms. If so, I would need to see a Rheumatologist for it. I just want to be able to sleep through the night. Tomorrow morning I have a CT scan to see how my chemo has been working. I ask that you please keep me in your prayers and thoughts for good news on the scan, and healing of my voice and foot. It's been a tough few weeks, but I truly appreciate your love, support and especially prayers. I'm keeping positive...thanks everyone :)

Biopsy negative!

Well, I finally got the results of the fluid biopsy and it was negative--Thank God! I'm in the middle of round 11 right now, and my doc decided to make the next scan a CT instead of a PET, so we're probably going to do that the week of September 15th and I'll probably get the news right around my birthday--woo-hoo! Thanks so much for all your love and support--it means so much! Please do keep me in your prayers.

Lucy! I'm hoooooomme!

Oh I can’t tell you how happy I am to be home. I had the surgery on Thursday afternoon and 800 ml of fluid was drained, and another 500 ml drained while I was in the hospital. I feel much better, I’m not out of breath, and the best part is I think the fluid is what was affecting my voice, because other than being sore/hoarse from the tubes, my voice almost sounds back to normal!! Yeah!!! I was up the next day walking the halls, amazing the nurses and just so excited to be walking with no troubles!
I did have a nightmarish first night, because I apparently stopped breathing for some reason when they were taking me out of the OR, so they had to bring me back in and put me on a ventilator. Staying that way for the entire night was pure torture—but it’s over now, and that’s all I care about. I just felt bad that my poor parents, husband and daughter had to see me laying there looking like a dead person and go home that night with that image in their heads. The fluid will be sent in for biopsy, but my surgeon said he didn’t think it looked like anything suspicious.
I will start round 11 of chemo on Thursday, and my doc wants to do two more rounds before we do another PET scan. Please do keep me in your thoughts and prayers. I truly appreciate all your love & support!

more surgery

Hi everyone--

Well, it looks like I'm going to need to have a little more surgery. I have some fluid around my heart that needs to be drained, and I will have the surgery at my favorite hospital (San Ramon)with my wonderful surgeon, Dr. Dharan--I don't plan to step foot in the ValleyCare jail for a while. I will go in on Thursday, 8/14 and be there (probably) until Saturday, 8/16. The good thing is that he seems sure this will take away my shortness of breath and then maybe I can start exercising again!! Yeah! They feel strongly that the fluid will not come back, either, so I'm very happy with that. Please keep me in your prayers for a successful surgery and quick recovery, because we go back to work the next week and I do not plan to miss a day! Thank you so much for your friendship & support!

Good news vocally!

Well, I just got back from the ENT & speech pathologist. I will tell you I have never gagged so many times in a row in my life--how embarrassing. But then it did feel like he was sticking a small curling iron down my throat and then asking me to sing that way!! Both docs were wonderful. It was very cool to see my vocal cords on the TV screen and to see that they are in very healthy condition, coming together very straight and flush. The only thing they could think of that could have done this to my voice is my chemo drug, but then they're not really sure about that. They were quite sure that it will heal itself over time, but that I will have to just wait it out. I'm ok with that as long as I know there is no permanent damage. I thank God for all your love & supportive prayers!

Hi everyone--
Any of you that have talked with me since I got out of the hospital in May have noticed my voice. It has been "out of commission" since I had my bronchoscopy in the hospital. Tomorrow I'll be seeing an ENT in San Francisco that specializes in singers to hopefully figure out what is wrong. I am just hoping there was no permanent damage and that it can be fixed or healed soon, so I'm a little anxious about the appointment. Please keep me in your thoughts & prayers.
As far as my other health issues are concerned, I finished round 9 of chemo and will start round 10 on Thursday. I'll have another PET scan at the end of this round to make sure things are working, and we'll go from there. Thank you so much for all your support & prayers!

OK, so I talked with the doc today, and I'm really not discouraged at all. Since I've been off chemo for two months (due to being in the hospital, etc.) and had not gone into full remission when I stopped treatment, he fully expected there to be growth. He's not worried, and neither am I. I will restart Gemzar tomorrow at 1:30. We both expect to turn this thing around, now that I'll be back on the treatment plan. The great news is, there was no spreading of the cancer to any other organs. Hallelujah! Thank you for your love, support, thoughts & prayers--and please keep them going because they are what keep ME going. I'll keep you updated with any changes.

Well, the doc's office finally called with not great news. The spots are growing again & I will need to get right back to my chemo regimen. At this point I have no details. My doc was in with other patients and didn't want me to have to wait any longer, so he had the receptionist call and read me the report. Well not like I understand all the medical terms, but the bottom line was that the spots are growing again. I will meet with the doc at 2:00 tomorrow to ask questions. At that point I will update and let you know what the plan is. Please keep me in your prayers that we will come up with the right plan. I'm hopeful that just getting back on chemo should turn things around in the right direction. He did feel the only reason there was growth was because of the 2 month gap from chemo. Thanks so much, everyone.

no news

Well, since many of you have been asking about my PET scan, I thought I'd quickly update the blog. Initially they gave me some not-so-great news of growth, but just like last time, they realized the comparison was wrong and so I am still waiting for the real report. They hope to have the report by Monday. Please pray for patience and good news... Thank you all so much!!

Happy Friday the 13th!

Hello everyone--
Well, as I write this, it is still Friday the 13th. I had a wonderful day as I proudly watched 35 of my seniors graduate. To my graduates, I was so proud of you and happy for you as you beautifully sang "You Raise Me Up" for your ceremony. Tonight you will soar as a Foothill Falcon should, but please visit often, as I will miss you.
This week I had my Thoracentisis, and after they realized I was going to freak out if they tried to stick me in the back with a needle without sedating me, and did it "MY WAY," it was a piece of cake. I've never been so happy to sleep through a procedure.
Today, about two hours before graduation, my doc's office called to give me the good news that the fluid they removed from my lung had been tested and came back negative. There was no cancer in that fluid--I Thank You God!
On Tuesday, June 24th, thanks to some amazing students, parents, community members, family & friends, I will be having my first PET scan in eight months. After that we will set the plan for the future. We're assuming it will be back to more Gemzar, but we have to get some PET results first.
I am blown away by the love, support and generosity you have shown me. I thank God for blessing me with all of you!

Hello everyone--
Well I thought I should update you on where I'm at. I was released from the hospital on Friday, May 16 and was so happy to return to school on Monday, May 19th, to be where I am truly happy--with my amazing students. In seven rehearsals we were able to bring together our end-of-the-year concert (thanks to a lot of help). On Thursday, many of my former and current students came together for the most beautiful benefit concert that they organized on my behalf to pay for PET scans. It was one of the most beautiful evenings of my life. I am so blessed!
This Tuesday, June 10th I will undergo a Thoracentesis at ValleyCare in Pleasanton--I know--I have no desire to go back to "jail," but it is an outpatient procedure. I will be back in school for the first of two graduation ceremonies on Wednesday. In this procedure they will be draining stuff from my lung and from the collection at the bottom of my heart. I hope this will help my breathlessness and they will be able to find out what caused my pneumonia. I am recovering from the pneumonia slowly, but I'm always out of breath and quite impatient waiting to regain my health. Once I've recovered, we will resume my chemo schedule.
Please keep me in your prayers that this procedure will go well and the results will be good ones! You know how I am going to love having a needle stuck in my back!!

I'm Home!!

Hi everyone,
Well I'm finally home from an unexpected 12 days in the hospital with pneumonia. I got home in the late afternoon yesterday, and especially with the heat I'm still short of breath and weak. I still have to go back for one last procedure where they will drain the fluid from my lung, but I'm going to do that as an outpatient and wait a little. Even though the people were so very good to me during my stay, I still felt like I was in jail--jail with more needles than I have ever been poked with in my life! A few of the days, I was placed in a TB isolation room, while they ruled out TB as the cause of my pneumonia--talk about lock down!
No computer or internet for 12 days brought me home to 289 unread school emails. I'm working on them. I still don't feel well enough to do much, but the weight of so much piled up work is driving me crazy. I'm still on three different antibiotics, so it's my hope that I'll get stronger each day. I've now missed two weeks of chemo, so I will have to talk with my oncologist on Monday to figure out the new plan. I'll blog again soon to keep you updated.
I can't thank you enough for the hospital visits, flowers, cards and phone calls that kept me sane. I thank God for all of you!

Hello everyone—
Just a quick update on all the confusion: We appealed my PET scan issue to Richard’s employer (our Aetna plan through his employer), and they also denied us. At this point we are looking for legal representation. It is just not right that our own health insurance is not giving me the care that I need, and I feel I need to fight this not just for me but for patients that come after me. If anyone has a good referral for this kind of legal representation, we’re open.

I’m feeling fine 2/3 way through round seven of Gemzar. We know it is working, as after the review with the other nurse practitioner, when they told me everything had “stayed the same,” a few days later I spoke with my nurse practitioner and she told me that in actuality the lesions in my lungs had shrunk! Hallelujah! So my doctor and I are comfortable staying on Gemzar for a few more rounds and then we will have to find a way to pay for a PET scan.

Speaking of which, I really don't know how to thank the anonymous person that left the beautiful card and gift for me. It was one of the kindest things anyone has done and I know your reward will be great in heaven! I only wish I knew who you were so I could thank you in person!!

I am so blessed to have all of you reading this blog supporting me with your thoughts and prayers, because you are getting me through this—and I plan to kick this thing!!

Thank you all so much!

Well, it sure did take a while to get the correct information, but it looks like the CT scan showed basically no change from my last scan in October. The information I was given on Friday was all incorrect, because the hospital based the comparison report on an old scan from 2006! I cannot tell you the emotional ups and downs they have put me through since Friday. I’m obviously condensing all that has happened, or you’d have a book to read right now. At one point yesterday, I was told everything had grown and we’d have to switch chemo drugs (and that I’d lose my hair again, etc.). Then as I was walking out of the office, the entire story changed when my doc called from his other office saying he had the actual report in his hands, nothing had changed and that we would be staying with Gemzar. Of course the really good news is always that there was no new growth. My concern now is that four months ago, you may remember the great news I had received was all based on a large reduction in cancerous activity, not size, so I am not shocked that the CT showed “basically no change.” I need a PET scan now more than ever to see what has happened with activity, so we will know how to proceed with treatments. We will have to find a way to pay for the PET until we can get Aetna to come around and pay up. I can’t tell you how much your prayers are helping me with support. Thank you so much!

Hello everyone—
Well, I had my CT scan on Thursday morning and Thursday afternoon Aetna called to say they denied my PET scans again. Needless to say, we are appealing again (this time directly with Richard’s employer who owns the group plan).
Yesterday a nurse practitioner (not my usual one) called from my oncologist’s office with the results, but she is not familiar with my case, so she was hesitant to answer my questions. It seems like mostly good news, but I won’t know everything until Monday, when my doc is back in the office. The best part is that the CT shows no new growth, and that many of the lesions in my lungs are shrinking. The not so great part is that it looks like the main mass grew a centimeter, and there is some more fluid in my lung. I’m not worried about the fluid too much, because fluid is a side effect of the Gemzar. I am confused about the growth in the main mass, though, and will have some questions for my doc on Monday. She couldn’t find any reference in the report to the two spots on my lungs that were being tracked before (the one had shrunk to the point where it was undetectable by PET or CT and the other was almost undetectable). I’m hoping that’s because they were undetectable, and not because it’s a different radiologist reading the scan, but again I should know more on Monday. I’m assuming I’ll be continuing with chemo, but until I talk with the doc nothing is for sure. Please do keep me in your prayers, and I will report back next week. Thanks so much for all your support!

Hi Everyone--
Well on Thursday I finished round 6 on Gemzar. Since I still have not been approved by Aetna for a PET scan, I am having a CT scan on Thursday. A CT will not really give us enough information, but it will give us size. We are hoping to hear of an approval from Aetna in time to get the scan changed to a PET this week. Either way, I will hopefully be having some news by either the end of this week or beginning of next. Please do keep me in your prayers, as it has been four months since my last scan, and we are hoping for more good news. This week is incredibly busy, as we are in tech week for our musical to open next week. Keeping busy is good. I hope to have good news to share with you soon! Thank you so much for all your thoughts, prayers and support.

Hello friends! It's been quite a while since my last blog. I have had my hands full with so much going on. Back in November I started having pain in my chest (in the place where my port used to be). They did an ultrasound, x-ray and bloodwork and came up with nothing. Finally they diagnosed the problem as Costochondritis, a condition where the cartilage around my sternum became inflamed and was rubbing against the bone. They said it was not uncommon for someone that had had radiation where I did. Unfortunately it took them 5 weeks to figure this out, and I was on Advil & other pain killers to get me through every day of it. They put me on Celebrex and it seems to be managing the pain, but the pain is still there. I also developed anemia (my hemoglobin went as low as 8.6, and my doc was pushing for a transfusion. I didn't want it, and took the Aranesp shot to boost my levels instead. It worked. I'm now back into the 10.7 range and holding (still low, but ok). Thursday will complete round 5 on Gemzar, and my doc would like to do another PET scan the following week, but now we have run into another issue. Aetna has decided they don't want to pay for my PET scans ($3300 each). It's interesting that they pay for PET scans on other types of cancer, but for some reason they consider PET scans to be "experimental" when it comes to my rare "thymic" cancer. We are already at the second-level appeal phase. Please keep us in your prayers, because I need these scans to make sure my treatments are still working and monitor my current situation. I have been feeling fine through the chemo, with minor side effects that haven't really hindered my lifestyle too much, so I'm very thankful to God for that. I'm hoping to get a PET scan soon and some more good news to go with it! I'll keep you posted...