Still waiting to hear

I am doing just fine and waiting for my appmt on Tuesday afternoon at 3:15pm with Dr. Miller to find out how he is going to get rid of this spot on my lung. My new motto is "Hope for the scope!", but I am not real optomistic that I will avoid a throchotomy.
I went to the Sacoma support group on Wednesday. It was great to see the folks I have been building a relationship with for about a year now. Most have been through much worse than I and they are truly an inspiration. In fact, before the meeting I contacted two members you have seen me write about before, Karen and Virginia. Karen has had 3 lung surgerys and 4 surgeries on her leg over the past 5 1/2 years. She is about my age, works from home and is a lot of fun. She is so positive and does a lot of research about our diease. She does not have the same cell type of Sarcoma as I do, so her treatment is a little different. She did have radiation but no chemo. She continues to have spots on her lungs, and when they get to be about 1 cm (as mine is now)Dr. Miller takes them out. She has accepted that every year or two she will need to have lung surgery and adjusts her schedule to fit. All of her spots have been sarcoma. I am still hoping this one is not, but the fact that it grew over the last 3 months is worrisome. However, I look at Karen, who is handling this all so well, and know that I can too. She has been very open about talking with me about all of this, and it is so nice to have someone who has been there before and knows what you are experiencing and help you anticipate what to expect next. For example, before my thorochotomy last time, I had to have a drug-induced stress test and a lung capacity test. I did not know if that was something that had to be done before every lung surgery or a one time thing. Karen never had the stress test (because she never had chemo, we guess) but did have the lung test -- but only before the first surgery. I was wondering about this because if Dr. Miller does let me go to England before surgery, I was not sure if I would need to have these test again before surgery and may need to build in some time for that. Of course, no two cases are exactly alike, but I am guessing there are some similar things.
I am still concerned about taking two weeks vacation, and then coming back and being off 4 to 6 weeks for surgery. It just does not seem right. My boss Kendra tells me not to worry about it, but I do. So if he allows me to go on to England and postpone surgery, I am going to have think about whether I should try to come back a few days ahead of Bob and get some work done first. I know I am the only one putting this pressure on me --but I cannot help it! I have a lot of work things we are doing that I am really excited about, and I do not want to miss any of it! But nor do I want to miss our time with family in England. A delimna for sure.
Virginia had sarcoma behind her knee 20+ year ago. It reoccured in 2007. The sarcoma was wrapped around so many vessels etc and the best option for her was to amputate her leg at the knee. Without doing that it would be a useless limb so now she can have a prothesis that helps her. At one point, I just thought that would be the worse thing in the world. It isn't. She is the most darling fun, positive woman who has a full life She drives a regular car with her left leg. She has an outside sales job like me and continues to thrive and be an inspiration for us all. She is always reaching out to new members and making every one feel at home, welcome, and comfortable talking about difficult subjects, as you might imagine. She is having to get a new joint, or something like that for her leg. Evidently your skin changes and from time to time you have to have an adjustment. Just as she was about the get this all done, and her prosthesis Dr was no longer on her insurance, so now she is having to change. She is on crutches now because they cannot reattach to the new joint right away. and I think the insurance company has to get the doctor thing straightened out. Her life continues on like normal and this is just a small challenge to her. She also has sarcoma in her lungs that they cannot remove. Fortunately, it is not growing and she is doing great. My little spot seems as insignificant as a broken finger nail (ok - those of you who really know me know that can be a little traumatic!). One other thing, the type leg she wanted costs $16,000 and is not covered by her insurance. She was going to get it anyway, hard as that would be. The company she works for had a big golf tournament, and unbeknowst to her raised the money to buy the leg. Another prosthesis company ask her to model a new great "foot" they had created and gave her a $5000 foot for free. These things are not cheap and most likely the ones that look the best may not always be covered by insurance. It is hard enough being sick -- and so many people have to deal with the financial end of it too. I am so lucky!

In the meantime, I am playing tennis, working and keeping busy till I get surgery schedule. I have a sinking spell every now and then but for the most part, I am doing pretty well.

One minor problem - we just got our house painted. We had to have the doors and windows open for a while, and on Thursday night (after we'd closed them all and gone to bed) we heard a noise in our room. Bob thought it was a bird. Being the chicken that I am (and very scared of birds), I ducked under the covers. Bob said it was a bat! It flew around and then, we think, it went into one of our guest bedrooms. We could not find it. Finally we shut the doors to all rooms and went to sleep. I was scared to leave our bedroom Friday morning, so Bob "manned up" and went on a bat hunt. He could not find it, but there is no way it has gotten out of the house. We called Animal Control looking for Batman to come and get this darn thing. They actually sent Batwoman instead. She was a little young thing, shorter than I am. All she had was a cage and a towel. She could not find it either. So "Robin" our code name for the bat is still here - somewhere. We mainly keep the doors shut. We had to open them when the carpet cleaner came today, and we did not tell him to be on the lookout for Robin either. I am not sure what our next move is. Batwoman told us to listen for Robin at night, and when we figure out what room he is in, to call animal control and they will come and get him. I thought we could leer him out with food. I think they are vegetarians and eat bugs too. So I am picking up some tofu at Publix. Just kidding I am kind of making light of this but frankly I am pretty scared! I am guessing Robin will either fly around at night and be heard banging against the windows trying to get out or will starve and die. It is really gross to think about. But it is another distraction none the less!
I will update on Tuesday!

Hanging In there

I am doing ok and keeping busy. Last night Rita and I went to the gym and got on the treadmill. I even baked a cake and got up early this morning to play tennis with my regular Saturday group- Susan, Paula and Loree, Going for a facial this afternoon, so life seems pretty normal.
I heard late yesterday that my appointment with Dr. Miller won't be until Tues, June 23. DocO is trying to get it moved up but I know Dr. Miller stays packed. Hopefully if it is the scope thing, maybe he can do it quickly and we can go to England as scheduled. Or, maybe he will even think it is ok to wait until we come back as planned on July 21. I keep hoping that, same as last time, it will just be an inflamation. I am not sure I am that lucky. And this time the spot got bigger- not smaller as it did before. Of course I did not even know the spot existed before. It is the uncertainty that gets you. In the meantime, we are getting the carpets cleaned, house painted, cooking stuff to freeze and trying to get some work projects taken care of so we can be better prepared. I am lucky that when I have surgery this time, it will not be after having months of chemo, radiation, the wound vac, and every other obstacle I had before. I am going to do every thing I can to go into surgery as healthy as possible so maybe recovery is not so hard.
More to come!

Not what I hoped for but I got the tee shirt

All this time, I thought you got the 2 year tee shirt from DocO if you were clean after two years. Seems you just get it for just surviving two years. So I did get that and am thrilled to have made that. But the news was not so good. I have a spot on my left long (different side from last time). Evidently it was there 3 months ago but now it is bigger - from 5mm to now 1cm. And it has to come out. Last time I was very lucky that is was not cancer. Most every spot like this on lungs of sarcoma patients is cancer. But I was the exception before and maybe I can be again.

So now I am waiting to hear from my lung surgeon, Dr. Miller to see what happens next and when. This morning is when I had the CT on my chest and MRI on my lung and when DocO discovered the spot. I knew when Andre', the P.A. came in first and told me he had not looked at the scans that something was wrong. Ususally he or a resident come in before DocO and give me a thumbs up so I am not too anxious waiting to hear from Doc O. He started by saying "Your leg looks fine but......". And so it goes. He did say the spot was very close to my treachea (sp) and maybe Dr. Miller could pull it out by going in with a bronchoscope (sp) instead of a full blown thorochotomy. That would be great. The throrchotomy is not a fun surgery. DocO has a call into Dr. Miller about getting me in to see him. The great thing about being a patient with all Docs in the Emory system is that they can all see my scans and reports on the Emory network-so no waiting for files to be sent. I am guess Dr. Miller will just look at my scans on line and decide from there how he is going to proceed. I am hoping once he reviews he will just call me and tell me what is next. If it is a bronchoscope and the recovery is easier - then I hope we get moving on it right away. If I have to do the full throchotemy then I just don't know.

We are supposed to be going to England July 5 for two weeks for Bob's mothers 90th birthday. If it is safe to put off the procedure till after, I 'd like to do that, even if we have to cut the trip short. I have tons of things going on at work-- all good stuff that I am really excited about and I hate to miss any of that too. S0 waiting till after vacation would give me a chance to get some things wrapped up. But of course we will not do that if it puts me in more danger.

So my head is spinning right now and not knowing what is next is driving me crazy. I am not thinking about what this means long term -- and like before my gut tells me it is nothing again. But regardless, the journey is not fun for anyone. It is not nearly as hard on me as it is Bob, our family and friends, and I worry about all that. But all I can do is wait!

In the meantime, I am going to try to get some things done while I am able. Stupid stuff like getting the carpets cleaned, getting the house painted and getting work in good shape and caught up. But first, I am having a massage this afternoon and playing tennis in the morning!

Life goes on. I know you all have me in your prayers, and I am so grateful for the wonderful support you have all given me. I promise to blog when I know what is next. I know I will be okay- just may have some tough days coming. But we have been here before and were just fine. And I got the tee shirt!

Just living a normal life!

I just wanted to let you know I am doing well and things are going great. Scans again June 13 on both my lungs and leg, but it is still far away so I am not feeling anxious yet.

I finally played an Alta League tennis match for the first time in 2 1/2 years. I had not wanted to be in the line up because I was not very secure about my game. I did not want to mess our team up in case we had a shot at going to the playoffs. Unfortunately, we were not in the running so I did play a couple of weeks ago. With my great game partner, Jennifer, we won our match 7-6; 6-0. The first set was long, and we came from behind 4-1 to win in a 11-9 tie breaker. The first set went on for days so it seemed, but I was able to hold up and was still feeling pretty energized (probably euphoric) even when it was over.

Bob had a great time with his family in England for a couple of weeks in March. We are both going back in July after my family reunion on the 4th and will be there for a couple of weeks. We will be celebrating his Mom's 90th birthday. She is an amazing woman and can run circles around all of us. She is the best Scrabble player ever. I have a hard time keeping up with her, except when we settle down for our 5pm glass of sherry and midnight sip of Bailey's Irish Creme. Maybe those things are the secret to a long, healthy life!

I am going to Callaway Gardens with tennis pals Lori, Paula and Susan next weekend- they were also part of my Department of Transportation that got me home from chemo. We are going to play tennis for 3 days and enjoy the spa there and the gardens. Just to make sure I can hang in, I did schedule a massage/reflexology in their spa. Should be fun weekend.

Work is still very hectic, but I have some really good things going there that I am excited about. So life is good! Stay tuned, and I will be back with you after the June 13 scans. Keep your fingers crossed!

Nothing but good news!

I am on a roll. First of all, my CT scan on my lungs today was all clear. What a relief! This is the first time in a long time, I have gone to the test confident results would be good. But you know me, I was scared that attitude would jinx me, but it did not. My visit with Doc O was, as he commented, very "social". We talked about his child, vacations, etc. It was great to have very little medical to talk about. The next visit I have with him will be a big one, on June 12 I think. I will have an MRI on my leg and another CT on my lungs. Even though my real surgery anniversary is July 16, some how we got off schedule. I am seeing him every 3 months, but I am going in June vs my July anniversary. He says he is pretty strict about the 2 year mark, but if I am clean in June, he will go ahead and give me my "2 year" tee shirt. After 2 years I think my scans become every 6 months instead of every 3. It is a milestone I can't wait to reach.

On other fronts, when I went to my GYN a month or so ago, he wanted me to of course have a mammogram and a pelvic intrasound, looking at the fibriod tumor on my uterous and a small cyst on my right ovary. I was a little worried but got good results on both. Fibroid was still there but had not grown and cyst was gone. The thing that really scared me was that he also insisted I have a BRACA (sp) test. This test checks you to see if you have the gene for breast and ovarian cancer. My mother died of breast cancer, and my sister, Lisa also has ovarian cancer (albeit a very slow growing kind that has been removed and is still gone). The other thing working against me is that Jewish woman of eastern Euporean origin, like me, have a very high incidence of breast and ovarian cancer. It is or was at one time and expensive test and usually insurance companies do have to approve the exam. I got even more scared when I was approved to take it, because that evidently validated the concern, in my opinion. I had known about the test, but I also knew that if you test positive, you need to be prepared to do something about it -- meaning having a hysterectomy and a double mascetomy. It would be very hard to know you are predisposed to having those cancers and take the chance by not having the surgery. My doctor really pushed me to have the test. I had decided if it were positive, I would have the hysterectomy but was not sure about the other. Too much surgery too soon. And I was hoping doctors would be satisfied with frequent MRIs or mammograms or something. Fortunately this afternoon, I got the news my tests were negative, meaning I did not have the gene, which is great news. The weight of all these tests has been pretty heavy the last few weeks, and I was more worried about BRACA than any of them. We are going to celebrate this weekend by doing taxes! But I am so happy even that sounds good to me!
Bob leaves for a 2 week trip to England to visit his family. It is an "off season" trip for him since we usually go together in the summer and Christmas. We both thought it would good for him to go visit since he did not get to stay as long at Christmas. I am going to take a long weekend while he is gone to go to Miami and visit my friend Angela and cousin Sunny and her family. I will hate to miss the UK trip be we will go back in July for Bob's Mom's 90th birthday and again at Christmas. And since I am a working girl, I only have just so much vacation. Bob has an easier boss - me. But he has a list of chores a mile long that have to be completed before he goes -fat chance.
Life is good. I know it is a very tough time for a lot of peopl and a very scary time for everyone. I am feeling very fortunate and very grateful- especially today!

Ooops- late

I am so sorry that it has been so long since I blogged. I hope you all know by know that is usually good news! Things are busy as ever. After our great trip to England for Christmas, we've hardly stopped long enough to catch our breath. We both have been busy at work and just normal stuff! What a great feeling!
The other day I actually had to look at the calendar to see when my next scans are. Ususally that day is just carved in my brain, so I must be getting over the anxiety. I heard it would get better, but I was showing no signs of that till now. Check on me again March 12, before scans on March 13, and I may be feeling a bit differently.
We went to a sarcoma fundraiser for Emory at Pizza Fortunato in Smyrna last week. All the proceeds did actually go directly to Dr. Gina D"Amato's research group. She is the chemo oncogist now at Emory totally dedicated to Sarcoma, and she is doing all sorts of testing to find better ways to treat us and help save the lives of sarcoma patients. She is really well known in her field, and we are really lucky to have her here in GA. In fact, Emory is about to get some sort of certification that designates them as one of the top cancer centers in the country. Hopefully new treatments will be less severe and more effective. So if you are ever looking for new places to make donations, this is the spot. It all goes directly to research. When I get the address, I will post it. Most of the people there were from my support group, our doctors nurses, and friends and family of other sarcoma patients. It was fun to be with all these folks in a more casual environment. They had a silent auction that raised a good bit of money, and all the food and drink proceeds that night were contributed. Really great pizza too if you are ever in that area. Our friend Mitzi went with us and she won her bid on a UGA Mathew Stafford and Noshan Marino autographed football. I won mine on a massage (of course) generously donated by Maria, my massage therapist.
I had seen Dr. D'Amato at a meeting before but never met her since she came to Emory after my chemo treatments were over. Ironically, I discovered she is good friends with Roxie, one of my workmates who surprisingly was also at the event, and she introduced us.
Dr. D'Ammato and both agree we hope we never see each other again, unless it is at a party. I now only see my surgeon, Dr. Oskouei (who was there too) and he orders all my scans and I never see the oncologist, as long as my scans are clear. I think others who had surgery at places other than Emory, are managed by Dr. D'Amato, and she orders their scans.
We are going to visit our friends Debbie and Joe in Sarasota for a long weekend on Thursday. Also, Bob is going back to England a week or so after my scans. He was not able to go for very long at Christmas since I had scans in mid December. So I bribed him to get a list of things I want done around the house with a trip home for a couple of weeks if he finishes his "honey do" list. So far, nothing has been checked off the list yet. But somehow he always manages to complete before the deadline, but I do keep adding to the list!
I promise to blog again after the March 13th scans. Thank heavens, life is uneventful right now and that is just fine with me! Happy Valentines Day!

Whew!

This time I was really certain that my scan results would not be good, but thank heavens, I was wrong. This is the only time I love being wrong! While I am so grateful, I did not feel a great sense of relief when Doc O told me the good news. He prefaced it by saying my leg "has a great deal of scaring and the radiologist needs to look at to verify" but he thought things looked fine. That sort of set the tone for me, and I just could not get the fear out of my head. He even asked me what was wrong, and when I told him my concern, he went on to explain he always sends scans on to the radioligist and this was nothing new. For some reason, I just could not get passed it. He told me if they saw anything, I would get a call in the next couple of hours. He did everything he could to assure me nothing was wrong, but I was still pretty scared. Even though the scans started at 7:45, and I was out of the doctor's office by 10:30 I took the day off today. I just can't focus on scan days and usually I do not sleep well for a couple of days before, so I knew better than to schedule an appointment where I had to think. I did have a manicure appointment however! I kept calling Bob from the nail salon and from other places while out running errands to see if we'd gotten a call from Doc O. He was only to call if they saw "something", so "no news" truly was "good news". I guess I was getting pretty paranoid, because I even accused Bob of not telling me Doc O had called and questioned whether he was waiting to tell me when I got home, or even when we got back from vacation in England. Of course he thought I was being over the top crazy, and I knew it. But I could not help but check caller ID when I got home to see if we'd had any calls from Emory Clinic Bob was not telling me about.

The sarcoma just came up out of no where, and I just have this fear something else, even unrelated, will do the same. I still have a lot of fatigue, and by the end of the day I am whipped. Two years ago, I was going strong from 6:30a.m till finally crashing at midnight. I give out of gas so quickly now and that is what is scary. I do try to remind myself that before I was traveling at an unnatural WARP speed, and maybe now this is really normal for a 54 year old. But I do know there is no more sarcoma, so I am good and clean for another three months, and I am really going to try and enjoy that.

I have tennis in the morning -- a little cold, yet we are dedicated. Bob leaves for England Monday, and I go on Thursday. I have tons of work to do before I go so, I have to pick up the pace a bit right now. But as soon as I get on the plane, I am really going to unwind and relax. But I have become a "Crackberry" so I will not quite get away from work while away. That is my own fault. My boss Kendra yells at me (in ALL CAPS) for sending and reading work email while on vacation, but when you love what you do it is not work, right?

I am looking forward to the holidays with our family, and especially enjoying a glass of sherry by the fire with Nanny, Bob's Mom. Bob's kids, Becky, Selina and Andrew will be joining us for a few days the weekend after Christmas. We have plans with friends on "Boxing Day" and of course Christmas with family. Nanny will kick my tail in Scrabble like she always does, but I hope I have gained back enough concentration since chemo to score a few points.

I know there are still a few of you out there reading this, and I am so appreciative. I really am so happy and relieved with my good news, yet I remain a little skeptical. I will have to learn to cope with that. Maybe next year. Oh- that reminds me. I about two weeks when I look back at what I was doing a year ago, I will finally be able to say, "I was back" at work and not have year old memories of being plugged into a machine or tons of needles coming out of me. I can no longer blame failed memory on chemo - that 12 month excuse is done- so now I must fall on the sword and accept all responsibility for my actions I love being accountable again!

Have a wonderful Hannuka, Christmas and New Years. Thanks for being such great supportive friends. I will blog again when we get back and keep you up today. I am cheering up Writing about it helps--even if no one reads it!