Still Learning

Apparently, steroids enhance one's sense of well-being, and once the effects wear off the being does not feel as well.

So it is with me. It seems like once the effects of the steroids I received at the chemo treatment wore off, I was not quite as happy a camper as I had been on Friday. Luckily, this weekend I was surrounded by friends with warm hearts and loving souls. They propped me up on the deck of the lake house and nourished me with their wonderful food and tales that are still worth telling. I could close my eyes and listen to their stories, and join in when I felt like it. Many thanks for that special time.

I am still amazed by all the support that I have received since the end of May. Aside from this blog, there is a website with occasional updates and a schedule for providing food for my family and me. If you are interested, it is http://www.lotsahelpinghands.com/c/605295/

Looking ahead to this week, I am forced to maintain a day to day schedule. I know what I would like to do tomorrow, and what a 3 day weekend in the summer could look like, but I am consigned to do what I can.

I meant to thank Amy for the new photo added to the blog. Me at Canyon Ranch. Hopefully I will be back there soon.


Sweet dreams.

Maybe today is the new "normal."
Radiation at 11:00 am, a brief shopping experience (for hats), and then on to the office for lunch and some administrative work. I'm feeling good, and thinking clearly. It has been a good day.

Next week's schedule will be different, as the only morning appointment available for radiation is at 9:30, so I will readjust my schedule.

In the meantime, I plan to enjoy the weekend, and hope all of you do the same.

First Treatment

In a nutshell, so far so good.

No problem with the radiation, which is very brief. It involves another very expensive machine with nice technicians but no shot. By far the most noticeable side effect is the black Sharpie dots and x's all over my chest.

The chemotherapy treatment was much more extensive. There are 4 drugs administered by IV prior to chemo - benadryl, tagamet, a steroid (decadron), and an anti-nausea drug (aloxi). That takes about an hour. Each chemo, and there are two, take about an hour to administer, also by IV. However, one of the chemos can cause significant allergic reaction, so for this first treatment the drip time was doubled, to make sure that I would be able to tolerate it. I had no allergic reactions, only a benadryl-induced slumber. We started with radiation at 11:00 am and didn't finish chemo until after 5:00 pm. Overall I'm feeling okay. Better yet, I left the treatment feeling hungry.

So, today reminded me of one of my favorite Carly Simon songs (before it was used in a ketchup commercial) - the Anticipation was worse than the event.

One down, my friends.

New Schedule

The show starts THIS THURSDAY instead of next Monday. Industrious Elyse wants to try to make Monday through Wednesday productive days. Don't expect to see me in court, or at 4 Way Meetings (for my collab colleagues), but I want to return to the office in some capacity.

Am I apprehensive? You bet.

And BTW, the chemo I will be receiving is carboplatin, which is in no way related to the precious metal that comprises the jewelry that I deserve after going through this s--t.

I'll be in touch :-)

Treatment Plan

Monday I begin the 7 week regimen of radiation, and weekly doses of carbo platinum and taxol, also for 7 weeks. There could be more chemotherapy, but it will depend on several contingencies that will be discussed at the end of the 7 weeks. Dubovsky (medical oncologist) prefers another 2 hits of chemotherapy 21 days apart, but again, it will depend on several factors. I will lose my hair (yuck), and if I do not start eating, Dr. D. is threatening to put in a feeding tube (yuckier). So, my goal between now and Monday is to gain no less than 5 lbs. Dr. D. recommends milkshakes, chocolate, Starbuck's Frappaccino in a bottle, and Bailey's Irish Cream. When I complained about the sugar, he told me I was too "rigid." Desperate times call for desperate measures, says he. Once the treatment begins, he expects that I will receive much of my nutrition from smoothies with all the protein additives I can find, including tofu, and protein powders.

Tomorrow I will be instructed on what to expect from chemotherapy (chemotherapy for dummies?), and have a few more x's drawn on my chest for the radiation. All in all, I am relieved that there is a plan, and my weight aside, I am more than ready to begin.

Sweet dreams, everyone.

I just viewed for the first time the Lotsa Helping Hands website. I am overwhelmed by the number of volunteers. It was also nice to see the well-wishing comments on that site, as well.

According to the radiation oncologist, there are no dietary restrictions during treatment, but I may prefer drinking my meals at times. Of course, I won't know until I get started. I do think there could be some significant restrictions from the chemotherapy treatments. I will know more about that this week, so stay tuned. I will post the dietary info on this blog, as well as the Lotsa Helping Hands website.

I am looking forward to taking Brent to camp tomorrow. He is excited, and of course he's glad that I'm coming.

Hope you're enjoying the weekend, and the mild Atlanta weather.

xoxoxoxox

A Better Day

What a roller coaster ride this has been.

I woke up today full of fear, hardly able to function. Today's visit from special friends meant so much to me, even if I struggled to be present with them.

This afternoon I met with the radiation oncologist and she was nothing but positive. She addressed all of my questions and concerns about treatment, about side effects, about my diagnosis, everything I could think of to ask. It looks like I will be getting a dose of radiation every week day for 7 (7!) weeks. She assured me, and reassured me again, that this is the protocol. This may cause fatigue, a rash, problems swallowing, a partially useless lung (I may still lose it anyway), but this, alone, will not cause hair loss, or any other dreaded side effects, real or imaginary. I will also be receiving chemotherapy treatment simultaneously. I am meeting with the oncologist on Monday, so I will have more information then. I was very upset after my other meeting with him, so I am apprehensive about that appointment. Nevertheless, having a concrete treatment plan, along with Dr. Wiggers' support have made a tremendous difference in my frame of mind.

After today's appointment, I was even feeling up to a visit to the offices of Aussenberg Waggoner LLP. (You may have heard of this ultra famous group of family law attorneys and staff. If you haven't, you should.) It was great to be there, to watch others enjoy Happy Hour even if I didn't partake, and take pleasure in the company of my colleagues. Depending upon the chemotherapy regimen, I am planning a return to the work force, albeit in a limited capacity.

I have also made plans to communicate with MD Anderson Medical Center in Houston. In the short term, I will get a second opinion (on records, only), but I will also establish a connection for future treatment or inquiries, if necessary.

So, I feel like I'm back in the saddle, or the oar boat, ready to paddle down this stream. Not sure how to explain that I'm excited about the prospect of weeks of dousing my body in various poisons, but it just feels right, at least for now.

My spirit is rejuvenated, even if my body still needs a lot of help.

Love to all.

Today's news was not what I, nor any of us, had hoped for.
Before surgery can be considered, I will need other treatment. I am meeting with a radiation oncologist tomorrow, and the medical oncologist on Monday. At least the waiting is over, and we know.
I am not sure that there is a way to prepare for bad news. It is still inconceivable to me that I am in this place. I am shaken, temporarily. I know that I must remain positive, so I will work through the disbelief, and fear, so that I can face what lies ahead.

I suppose it can't hurt to keep those prayers coming.

xoxoxoxo

Well today wasn't too bad!
As usual the waiting around was the most difficult part. I was allowed to check in at 6:30 instead of 5:30, but the surgery didn't take place until at 9:00 am. So after sitting in the mass waiting room for awhile, we were ushered into into some yucky little pre-surgery cubicle with bad lighting and little privacy until I was brought to another pre-surgery cubicle that was slightly nicer. I had a great anesthesiologist who used all her power to help me avoid nausea from the anesthesia, and I woke up with a large bandage on my neck but otherwise ready to blow the joint. But MD in Power said I couldn't leave until 3pm so I made myself a nuisance and might have earned an early release. But I will never admit it.

I took a good nap this afternoon and woke up to a delicious dinner and a tree across our driveway. The tree incident was cleared about the time the rest of the anesthesia wore off, so I have a sore neck but am happy to have this behind me.

I am threatening to go to work later this week but this bandage is a little scary looking, so I'll see. I am stuck with it and no shower (baths only) for 7 days. In the meantime, I have enjoyed my brother's company and my gaggle of friends to cheer me on.

Thanks, everyone, for another good day.

A Change of Plans

Today brought a new plan, courtesy of the Big Three (Scheinberg, Moore, Dubovsky). Tomorrow I am going to undergo two procedures performed by the surgeon, Dr. Moore. He will perform his own bronchoscopy and he will also obtain samples of lymph nodes on my right side. This involves making an incision in my chest, under general anesthesia. Apparently, at this point, the only "red light" to the surgery is whether my right side is infected. If so, then I will receive other treatment before surgery. If not, my understanding is that I will have surgery to remove my lung 7 to 10 days from tomorrow. The wait is due to the general anesthesia I will require tomorrow.

So, more waiting, but with the waiting will come more knowledge, so I will not complain.

Based on my recovery from the two endoscopic procedures, I fully expect to feel lousy tomorrow, and several days thereafter.

I will keep you posted, even if by a surrogate blogger.

Love to all.

This weekend was quite pleasant, all things considered.

I walked on the Greenway on Saturday morning, made a brief stop at a small farmer's market, and was able to party with friends on Saturday night. Although my version of partying was vastly different from most of the other guests, I still had fun. Today we picked my brother up at the airport, and we enjoyed a delicious dinner provided by family and friends, along with their company.

Since Thursday, I have managed to keep spooky thoughts at bay. Tomorrow I have my pre-op meeting, so that may set me back.

I know I am facing a critical week, but all your support helps keep my spirits up, and my mind focused on the tasks ahead.

xoxoox

It is difficult to understand why today was so much different than the day before. I finally took some cough medicine before I went to sleep, so I slept well Thursday night. I woke up feeling good, ate a respectable lunch and dinner, and my energy level remained steady throughout the day. It was another almost "normal" day. I even felt a little guilty not going to work.

I particularly wonder about the food issues I am experiencing. For instance, I am not at all interested in coffee, and even chocolate has lost it's considerable appeal. It reminds of being pregnant. There are smells and tastes that I find unpleasant, and I have lost any desire to eat breakfast, which is highly unlike me. In fact, skipping any meal is unusual for me. About the only food craving I have is for protein.

I don't think I can distinguish whether my bad days are rooted in emotional or physical troubles. Right now I'm thinking that "mind over matter" can be powerful. So that is challenge du jour, really every day.... to stay positive.

June 12, Part II

From darkness to light.....

I didn't think I could get there today, couldn't see where to go.

There are so many people behind me and beside me, but today it was Michelle, Mindy, Ann, Dr. Cynman, and Dr. Scheinberg who pulled me up and out. My lung may belong to medical science, but tonight my heart belongs to all of you.

And special mention to the dinner crowd, especially for teaching me how to correctly use a roll of plastic wrap and aluminum foil. You have changed my life forever.

xoxoxoxo

Yesterday was a difficult day. The meeting with the oncologist provided a wealth of information, but still left big questions unanswered.

The results of last week's endoscopic procedures were inconclusive. The current plan is to proceed with the surgery next Tuesday with the understanding that the first step on that day would be to perform biopsies on lymph nodes from both the right and left sides of my chest. Apparently, these biopsies involve significant amounts of tissue, much more than can be obtained from the endoscopic procedures. If there is any indication that these nodes are infected, the surgery will be postponed. I know that I have already written about that possibility, but I have also become more aware of the consequences of that scenario. The discussions between the oncologist, surgeon and pulmonologist are ongoing, so my cell phone is glued to my ear and I wait......

I am so lucky to have friends who can provide knowledge and support during this difficult time. I cannot thank you enough.

I am ready for this day to end.
I was tired all day, and frustrated by the lack of communication from and between physicians.
I have no test results, only an early morning appointment tomorrow with an oncologist. I expect that I will know tomorrow whether I will going for surgery next week, or will be receiving other treatment first. In any case, I am quite anxious for treatment, any treatment.
Thank heavens for family and friends.
They're keeping me on track.

Stay tuned......

The day started out slow....breakfast out to accommodate house cleaners....two mile walk at Leita Thompson Park with all the Denys boys (John, Brent, Dash, Dewey and Sammy Davis Jr. Jr.)(no that's not a misprint - his name IS Sammy Davis Jr. Jr.). I struggled to eat my fruit and yogurt, the walk was not easy......

But then, after some stretching and a shower, I suddenly felt....myself again! It was just like me! I got dressed, had some lunch and..... went to work! It was so normal. You cannot imagine how nice it was to sit in my office, bark a few orders and feel like me. Just plain me.

Thank you for today, whoever you are.

Brent and John enjoyed their day on the river. That water is a refreshing relief from our current (no pun intended) heat wave.
For me, it was a quiet day, pretty much by choice.
Thanks for all your calls and offers to visit, even if I wasn't up for anything.
Having taken this day to rest, I am feeling better.

I enjoyed a series of pleasant visits from friends, in an otherwise uneventful day.

I have to admit to harboring a little secret that I was going to reveal tonight. I was hoping to catch a raft down the Nantahala River tomorrow, paddled by Amy and by my river-guide-for-life. (That would be John, of course.) Alas, Friday's tests knocked me down too far, and I don't feel up to a full day trip that will be physically demanding, even under the best of circumstances. I will have to take a temporary rain check on this trip.

Sweet dreams, everyone.

Think hit in the chest with a baseball bat.
Back to back endoscopic procedures anger the chest gods.
I managed to make it to the pool party in my honor this afternoon, but just barely.
The gods were so angry that I missed Kathy's awesome dinner, including the best stuffed cabbage south of the Second Avenue Deli.

I am hoping for a good night's sleep, and a better day tomorrow.

What a busy day I had!
First there was the run-of-the-mill test that involved a multimillion dollar machine and a friendly technician to inject me with radioactive fluid. I forgot to ask how many thousands of dollars this test cost. It also gave me another opportunity to see the receptionist at the Northside-Alpharetta Imaging Center. We're now friends. I have been there so often lately that I do not even have to give her my name when I check in.
Back at home I enjoyed a visit from my aunt, and then it was off to a movie with my family. That felt decadent. A movie in the the middle of a weekday!
After my usual afternoon nap, I thoroughly enjoyed dinner with friends.
An excellent day.

Tomorrow I am scheduled for the two endoscopic biopsies. With any luck, I will not remember a thing.

Thoughts for the day:

• Some friends know how to blog. Some need special assistance.
• It can be difficult watching life go on around me while I wait for mine to start again.
• I have amazing friends and family.

Keep those prayers, comments, emails coming. You all, everyone one of you, are the best.

Sending love back

Elyse

Just thinking today about this blogging thing. I did not give it much thought before I did it - only that it could provide information to a lot of people easily (and that I could put up that picture of me rowing a raft, which I really can't do but which looks cute anyway). I did not consider that there would be ups and downs, that it could get intense, raw even.

Which leads me to today. I thought treatment protocols were set, and that my own treatment would follow a certain path. It occured to me today that this is not the case. I am learning that each person's illness is different, and that physicians make judgment calls, much like in other professions. That this is as much art as it is science.

So, I wait. For results of more tests, input from a medical oncologist. It is so much easier to be doing something. Waiting is so hard.

Still, I feel all the love and support, I trust the professionals, and I know I can do this.

Tomorrow is another test and another day.

More information came my way this evening by way of a telephone call from my pulmonologist, Dr. Scheinberg.

My case was presented to a multidisciplinary group of physicians at St. Joseph's this morning. Absent were the medical oncologists, away at a conference. Dr. Scheinberg intends to consult with them as soon as they return. In the meantime, the consensus among the group present this morning is that if there is any involvement in the lymph nodes in my chest that I be treated with chemotherapy and radiation prior to surgery. Apparently, it is much more difficult for patients to tolerate this treatment after surgery, than before. The CT and PET scans were both negative for this involvement, but apparently these tests are not 100% percent accurate. (Too bad, because I believe the CT scan cost $5,900.00, and the PET scan was surely more.) I also get the impression that Scheinberg has concerns about the lymph nodes being involved. The problem is that the only way to make that absolute determination is to make an incision into the chest, under general anesthesia, to biopsy the nodes. This is routinely done at the time of the surgery. Since my surgery isn't scheduled until June 17, Scheinberg does not want to sit around and wait. (My hero, again.) He is scheduling two tests back to back, hopefully this week - an endoscopic ultrasound and an endobronchial ultrasound. One test is performed by a pulmonologist and one by a gastrointestinal MD. Protocol is similar to the bronchoscopy I had the week before last, meaning give me drugs, stick a tube down my throat, I wake up and don't remember anything. If the results are positive, we can start the chemo/radiation asap. If the results are negative, then we still have to wait for the surgery. This may not sound like good news, but for someone sitting around with a massive tumor in her chest, it feels like we're at least doing something. Too much information? You know it's more than I ever wanted to know.

Regardless, every time I talk to Scheinberg I feel cured, even if I'm not.

First, thank you's are due for the visits and food this past weekend. Everything is appreciated.

The meeting with the surgeon this morning was not as upbeat as I had hoped. Here is where it stands:

Surgery is currently scheduled for June 17 at St. Jo's. However, there is still some possiblity that I will need chemotherapy and/or radiation prior to surgery. That decision is pending a presentation of my case to a panel at St. Jo's that will be made by my pulmonologist, Paul Scheinberg. That meeting takes place tomorrow. Assuming that surgery is a "go" on 6/17, the first step after I am put to sleep will be to check lymph nodes inside my chest. According to the PET scan, which the surgeon describes as 80 - 85% accurate, they are not showing as affected, but if a biopsy done on the day of surgery shows otherwise, then the surgery will be postponed and different treatment options will be considered. If the biopsy is negative and the surgery proceeds, the most likely scenario is the loss of my left lung. Apparently, many decisons on how to proceed are made that day.

All in all, it was sobering. I am processing all the information that I received and remain optimistic.