Monday Afternoon

Geri spent a couple of hours in the recovery area and is now in the ICU. She will be there tonight and move to a room tomorrow. Generally she is feeling fine but tired and she has some pain in her sholder which could be from the chest tube or from the way the way they pull your arm up during surgery, or both. The family members have left now (Gladys, Rhoda, Nan and Cindy) and I am waiting for the nextICU visiting slot, 4:30 - 6:30pm. Cindy will be back tomorrow and we will tag-team during the day. I will update the blog tomorrow.

Post-Op

Dr Miller has just reported that everything went well during the surgery. The tumour was about 1.5 cm, not significantly larger than the CT scan indicated about 1 month ago. It was related to the sarcoma and we will know more after the lab work is completed. Geri will move into post-op care shortly and we can see her in about an hour. I'll update the blog later.

First up!

Today was my pre-admissions stuff. I tried to talk Bob out of going with me today and last Monday too since I was just having tests, and he would be sitting around for 4 hours. but he insisted on coming. What a good guy! I was surprised that even though I had a chest CT scan on Monday and a heart echo test, they still made me have a lung xray and ekg today. I learned that you do look at some different things in each.
After all the tests and a quick lunch, we went to Dr. Miller's office. We met with his Physician's Assistant Jim, who we knew from the last surgery. Jim took my chest tubes out last time after they'd removed the epidural. Everyone who had ever had a chest tube before told me getting them out, although quick, was really painful. I told Jim today I never wanted anyone but him taking out my chest tubes. It was quick and easy, so that is one thing I am no longer fearful of.
Jim was basically just reviewing the procedure and checking me out a bit. I was disappointed that he had not looked at my CT scan because I wanted to know if it had changed -either grown or gotten smaller (fat chance). Jim agreed this would be an easier surgery than before, and was certain I would come through it just fine. He said I would "not like them for a few weeks", so I am pretty sure that means, I am going to be pretty uncomfortable for a while. I am not reluctant to take pain medication, so I know we can keep it under control. He thought if I healed normally, I may be able to play tennis in 6 weeks or so; back to work in 3 to 4.
Everything today was pretty much as expected. I have a couple of work things I want to wrap up that should not take more than an hour or two, and a couple of errands to run, and I am ready to go. I am the first patient on Monday. We have to be there at 5:30 a.m. and surgery will not start till around 7:30. I am glad to be first, but I hate that my great cheering squad has to get up so early. The brochure said you should only have a couple of family members in the waiting aream but I think I am up to about 6 right now - Bob, sister Cindy, Aunt Rhoda, Cousins Gladys and Nan, and friend Mitzi. Last time the group screamed in the waiting area when they found out the spots were benign, and security came up to check things out. I hope they hear good news and want to scream, but hopefully we can make it through this whole thing without anyone getting kicked out of the hospital.
We have dinner plans with family and friends all weekend. I have my Sat morning tennis match, getting my hair taken care of, and trying to cook a couple of more things to freeze. So it is a pretty normal weekend, and we are off bright and early Monday morning. I am having problems with my Blackberry and am having it replaced. That means my cell phone will be out of order for a couple of days Monday and Tuesday, so if you are emailing me or trying to call, you may not be able to get me unless you call the hospital. That is probably a good thing, so it means I really will rest. Bob will blog sometime after I am out of surgery and wake up, so you should have an update after lunch. Keep those prayers and good wishes coming. I am counting on them and you to get me through!
Love,
Geri

Getting Ready

I had my pre-op tests on Monday to see if my heart and lungs were strong enough to handle the surgery on Monday, Aug 3. I guess I passed since the doctors bookkeeper called to see how I was going to handle the surgeons fees not covered by medical insurance. If they want my money, it must be okay to cut on me. Flex spending accounts are great. All I had to do was give her that debit card number, and no many has to change hands - so to speak.

I had a little scare in the pre-op drug induced echo gram. The technician was uncertain about a"spot" she saw on my heart. There was a 15 minute scare, and after consulting a resident and a surgeon, they all agreed they were seeing a shawdow. The Lung tech said he could see no reason to postpone surgery. The only thing I don't know about is the CT scan. I am sure Dr. Miller will review before he sees me for my pre-op appmt with him on Friday. Of course, in my crazy head, I have him looking at the films and the spots have disappeared altogether. He is not even considering that as an option, and has taken the scan to see if there are any changes - maybe even any more to come out. He thinks my last spots in Nov 2007 that were non cancerous were a fluke and that is never going to happen again. But a girl can dream! I picture him pulling up those films in front of me on Friday and is suprised to learn the nodules have vanished. Maybe he is looking at the wrong films. He brings in his assistant and yells at her for giving him the wrong films, but she assures him they are correct, and once again I am the miracle girl No surgery. We live happliy every after. The End!

But realistically, I know that would be truly one huge miracle. My best hope is that is a low grade tumor and no chemo is needed. Dr. Miller plucks out the spot. I am in the hospital 5 days, off work three weeks, and back on the tennis courts by Labor Day. This dream could really happen and is a bit more realistic.

We had fun at the Sarcoma Walk, I had lots of family, friends and even business associates who are also friends there too. Many of us went to a restautant after and I had Bob and Tom (husband of friend and Sarcoma survivor Karen)'s birthday cake. We are so appreciative to all of you who came out and other of you who could not make it but did make donations,

I am spending Wed and Thurs getting some work things done, with pre-admissions stuff on Friday. Unless there is anything earth shattering we learn Friday (like no surgery, more extensive surgery) we will probably not post on the blog till after surgery on Monday. Last time I was the 4th case of the day. After arriving at 6am I did not get back to the OR till about 1:30 ao it could be a long day and no posting till that evening. But my news was so good I was well enough to send some messages myself from the post op room. No telling what I said, all tanked uo with meds. So I will give a disclaimer now!

I am about to fall asleep writing this so I better sign off. Thank you for all your good wishes and prayers. They keep me going. I will be alright!
Love,
Geri

Update from England

My surgery is scheduled for Monday August 3. I go in July 27 for some tests on my heart, lungs and another CT scan to make sure everything is in working order and can handle the surgery. On July 31, I go to the hospital for some more pre-op stuff and see Dr. Miller, probably to go over what to expect during and after surgery. I am pretty sure I know the routine, so I am hoping for no surprises. I can't decide whether to go back and review my old blogs from the last lung surgery time period as a refresher course. There are just some things I don't think I want to be reminded of so I think I will wait until we at least come home from vacation in England.

We are still here and having a lovely time. It is great getting away from the Atlanta heat. Our weather has pretty much been in the mid 60's but we have not had very much sun. Luckily our best sunny day so far was the day of Bob's Mom's 90th birthday party. We had over 100 people for an open house type party in her garden on Sunday afternoon, and it all came off without a hitch. We've stayed busy with family and friends, and it has been a great distraction for me. Every now and then when it gets a little quiet, I can't help but drift back to what's ahead. We are enjoying our visit, but it is passing much to quickly. We will head back to London on Monday, July 20, and back to Atlanta on the 21st. It is good I will have 6 full working days before surgery, and a couple of weekends at home to take care of some things.

I should be in the hospital about 4 days, and hopefully off work only 3 weeks. Hopefully all will go well, and we can stick to this schedule.

A few of you have asked me about the Sarcoma Walk or how you can make donations to the SE Sarcoma Foundation. The foundation is in the process of making their 501.3.c (?) filing to gain tax deductible status. They can send a letter acknowledging any donations indicating the pending status.
If you are interested in attending the Sarcoma Walk, Friday July 24 at 7pm at Piedmont Park, email Ned Crystal at ned.crystal@gmail.com. or mail donations to:
Southeastern Sarcoma Foundation
c/o Ned Crystal
693 Longshadow Trail
Smyrna, GA 30082

If you come to the Walk, please plan on joining us after at Willys Mexicana Grill on 10th Street and Piedmont. Hope to see you there!

Sarcoma Walk

I don't really like to do advertising but this is a unique opportunity!

Bob and I are going to attend the Sarcoma Walk at Piedmont Park Baseball Fields, at 7pm Friday July 24 (his birthday- but he will kill me for annoucing that ). It is a short walk with no registation fee. The will sell tee shirts for $15 that all go to the SE Sarcoma Foundation. This is part of Emory and the doctor that heads the research is Gina D'Amota. When I think of all the big cancer foundations that get well deserved research money, it is amazing to think that a lot of the research that may well save my life is being done right here in Atlanta- and by the woman and her team that would be my chemo doc, heaven forbid I have to go that route again. She is bright, funny and commited to her work. Since there are only 9000 patients in the US that get Sarcoma each year, we do not get a lot of research money like some of the more "popular" cancers.

If by chance you are interested in joing us you can contact Ned Crystal, a volunteer and fellow Sarcoma patient who put the whole foundation together. He is truly amazing and really doing something to save his own life. Ned can be reached at 678-779-8572 or at ned.crystal@gmail.com. You can also pre-order "Walk for Awareness" t-shirts. Afterwards some folks are going to hang out at a local resturant at 12th Street and Peidmont. I know Friday nights are tough, but it is a great cause-one I take pretty personally as you can imagine.

A bit of an update -I have all my pre- surgery tests July 27. They will call me probably tomorrow for a surgery date.

We still have no sign of Robin, our bat friend. We keep all the bedroom doors shut most of the time but we do forget. I make Bob do a "bat check" each night just to make sure he is not sleeping with us and will not appear when all the lights go out. At some point we are going to have to give him up for dead. I cannot image what he is eating or drinking. If he is finding bugs in this house and leaving, I just soon ignore him But there is the part about him maybe having rabies that scares me a bit. We just don't know what to do about it!

Cindy is all set to be my surgery partner once again. She is great in the hospital. She will have the night shift for the first couple of nights till I am not chained to IV's, leg things, cathetres (sp) and Bob takes over during the day. We have a routine down about washing my hair - or my non hair head as the case was last time. There are so many things Bob is great at doing- but I am pretty sure blowdrying my hair is not going to be one of them. And I have to have my hair (or head) washed everyday, no matter what else is going on in my life! I did tell Cindy tonight that she had to change the tone on her cell phone during my hospital stay. While I am a huge Alabama Football Fan, I cannot tolerate the fight song as the cell phone ring, especially when it goes off every 5 minutes. At our family reunion on the 4th of July, we are going to pre-screen the phone rings and select a hospital appropriate tone- vibrate I think. I guess the funny thing about this is that most of you know I cannot go 5 minutes without my Blackberry. So only other peoples' phones drive me crazy.

I have had some painful memories in the last couple of days about my last thorochotamy, so I have been trying to remember the "good times" there! It is easy because there are so few! Emory Crawford Long (or Emory Mid-Town as it is called now) has a great fruit plate on the menu for patients. The staff figured out that was about all I would eat so I got one every meal. I got great care from the staff and doctors - even the chemo staff came to check on me.That may be it for the good times! But I know I am not there for a picnic, and I am sure I could not be in better hands than Dr. Miller. And if you ever need to get a chest tube taken out, his PA Jim is the one for the job. Everyone told me how painful that would be. They remove the epidural first so you do feel the pain of the tubes. Jim had me sort of in a fetal position and it was over before I knew it. That as been my biggest fear of the surgery, so I guess now knowing that will not hurt does help. One last good memory -well I heard about it anyway. While I was in surgery, most of my siblings-Cindy, Syd and Michael, Bob, brother in law Jim, Aunt Rhoda, Uncle Marvin, Cousin Cladys, and heaven knows who else were all in the waiting room. Doc O (who is the leg surgeon, not the lung surgeon) got so excited when he found out I did not have Sarcoma in my lungs he went running out in the waiting room to steal Dr. Miller's thunder and tell everyone it was not cancer. Being the over dramatic family that we are, everyone let out a big scream. The security guards came running up the stairs to the screams, and that just about all got kicked out the hospital. The story later told was hilarious. I think Doc O got hugs and cheers from all sorts of members from my crazy family and lots of other folks in the waiting room were coming over to hear the good news. Doc O made me promise to let him know the date as he wants to be there. Here's hoping he can be the hero and deliver the same good news again!

I

As expected

I felt pretty good when I left Dr. Miller's office today, but now I have had a little too much time to think, and I have scared myself a bit. Let me explain. Dr. Miller said the nodule had to come out, as expected. He said it is more defined than the ones I had before, which makes it really look like sarcoma. However, he did say that last time - but was even more emphatic this time. I think he did not want me to have any false expectations that this could just be an infection again. I asked him if there were just some people prone to having spots on their lungs in general (not sarcoma) or anyone who had spots on more than one occasion that were not sarcoma. He reminded me there is only one other sarcoma patient he has had in the last 20 years where the spot on the lung was not sarcoma, so there were not repeat customers like that. Maybe I can set a new trend? He really gave me no hope for that. I won't let that stop me from trying.

For the good news - it is small and slow growing. He encouraged me to go ahead and go to England and plan on surgery the first week in August. They will call me Monday to schedule.
He will do another CT scan before then to see what it looks like then and if there are any more. I am hoping it will have gotten smaller like last timem bit highly unlikely! I hate to be negative, but I really don't want to set myself up for dissapointment. I also have to have another drug induced stress test for my heart and lung capacity test before the surgery. It will be a thorchotomy again; no scope. When I told him that Doc O indicated he may be able to scope he looked at me like I was crazy. He said it was way to low in the lung for that, and he would show it to me to prove it if I wanted him to. I told him that I trusted him and that perhaps Doc O better stick to legs. As long as everything remains the same and no other nodules, the incision should be smaller than last time since, he does not have to go to two parts of my lung. Recovery about 3 weeks. Pretty much everything the same as before except I am healthier going in (no recent chemo, radiation, etc) and a smaller cut, only one chest tube. They will give me an epidural that will stay in for a few days. That keeps me from feeling the chest tube which I understand can be pretty miserable. Last time I mainly hurt from being propped up on my left shoulder during surgery. It was really miserable, because they could not give me other pain medicine. You get the epidural for the chest tube pain, but it is so localized it did not reach up and extend to the shoulder pain. And, you can't get pain meds on top of the epidural. While I am grateful for the epidural, I just remembered how jittery it made me. My hands were shaking so badly, I could not hold a glass without using both hands. Also I could not walk without a walker. But soon after they took it out, that all went away.

One thing that is almost funny now but it petrified me then - they gave me some Benedryl on top of sleeping pills to help me sleep. I had a main line into my neck where there was an IV and that is how I got meds. They gave me the Benedryl this way, and it took affect within 90 seconds or so. I was so shocked at how drowsey I felt so quickly, I thought I was having a stroke. My mouth got so dry, and I could not get words out. Cindy was there with me, and after we realized what was going on, we did laugh about my reaction. I slept really well, but I will never do that again. From that point on, all my Benedryl was oral!

I asked about after treatment and this is the most bothersome part. If the tumor is high grade, then I may have to have more chemo. We won't know that until surgery and they do the biopsy. But as my friend Karen says. "Don"t bleed till you get shot!" Also I keep telling myself that "chemo is my friend". And what a bitch she is! My leg tumor was more that 99% dead when they took it out. No one knows whether it was chemo or radiation that killed it, but something did. There are others where that treatment had no effect, so I should be glad to know my cancer can be killed off. Yet the idea of chemo again, does terrify me. But I am going to try not to bleed just yet.

In the meantime, I am going to enjoy my family reunion in Birminghams, mytrip to England, try to wrap up some big exciting things I have going on at work, play some tennis, and get some things done around the house. Poor Bob, and the rest of my family. They will be back to waiting on me hand and foot, and worrying about me all the time. I wish there was something I could do about that. I have not even made up for all everyone had to do for me the last time, and here I go again being all needy. That is really the worst part of it all. It is harder on everyone else than it is on me. So I am back to depending on all of you for support and prayers again. It worked last time!

I will keep you posted as soon as I have dates. I hope to see or talk to many of you before then. Thanks so much for keeping up with me, and keeping me in your thoughts.
Love,
Geri