angelofcharlie20 Posted July 1, 2006 Share Posted July 1, 2006 Hi All, Quick update. Gammaknife has been completed. Now waiting for the follow up appointment with MRI to see if it worked. Crossing fingers tightly. My father said the hardest part was getting the novacaine injected into his head before securing the metal frame. Other than that it was a piece of cake. Let's hope he's not experiencing any side effects. He was feeling fine when I last saw him at 8:30 pm. Chris- Thanks for praying to the Parking Gods. I'll update after Monday's second opinion appointment. Praying for options. Toodles, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 1, 2006 Author Share Posted July 1, 2006 Hiya Shirley lol hey no problems praying to the parking gods! Anytime and I am so glad they listened!! I am really, really glad that you and Grace are able to share notes and experiences. So great to have someone nearby that can and will offer up so much in the way of suggestions etc. I have you and Grace and your families in my thoughts and prayers, as always, and will continue to keep you all there. Keeping up those positive thoughts for nothing but GREAT results as well. Enjoy the weekend and try and relax. I am around, so if you need me, call. Hugs~ Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted July 1, 2006 Share Posted July 1, 2006 Hi Chris, thanks for all the prayers... hope you have a good 4th....we're going to see some "real" fireworks this year...( finally the city realizes they need them)....take care Grace Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 1, 2006 Author Share Posted July 1, 2006 Hi Grace, Have a great time!! Not sure what we are doing yet but I don't travel too far on holiday weekends as traffic is a nightmare and UGH... There are several parties and fireworks shows happening between now and the 4th so I am sure it will be great. Enjoy the weekend and prayers and positive thoughts continue for you all, as always, Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 1, 2006 Share Posted July 1, 2006 Hi Ladies, Happy 4th to All! Praying for everyone as well. The good Lord will hear us! Eat lots of BBQ. Toodles, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 1, 2006 Author Share Posted July 1, 2006 lol Hey Shirley, Thought you would be on the road by now~ Thanks for the wishes, and same right back at you. RELAX AND ENJOY, please!!!! Talk to you when you get back...... Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 4, 2006 Share Posted July 4, 2006 Hilo, Our second opinion at Commonwealth Hematology and Oncology was yesterday. I am happy to announce that there are options! Turns out that this oncologist has known my father's regular oncologist for awhile now. After she rattled off the options I asked why he hadn't offered us any. All she did was shrug. Here are our options: 1) implant spheres in the liver - which would cut off the blood supply to the tumor 2) radiofrequency ablation (RFA) - which cooks the tumor with microwaves 3) chemo with other drugs. The doctor suggested that we opt for RFA since my father is still strong enough for it and save chemo for later if needed. The doctor is going to call Brigham and Women's to see what the earliest available date is. She's supposed to call me tomorrow. Cross your fingers for an early date. Crossing fingers, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 4, 2006 Author Share Posted July 4, 2006 Hey Shirley!~ Welcome home and WOWSA!! this is sounding much more positive than before and I am soooooooo glad!!!! I do not know much about the RFA but was reading something about it not too long ago. Sounds promising!!!!! I am just so glad you got a different dr and opinions and OPTIONS!!!!! Saying extra prayers and thinking tons of positive thoughts!!! Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted July 5, 2006 Share Posted July 5, 2006 Shirley, I am so psyched!!!! I'm really very happy to know that there are definitely options for your dad, and it sounds like the new onc. is on the ball!!!!! Happy 4th.... **** Also Happy 4th to you too Chris, I'm going out to see the fireworks w/ the girls now!!!! Grace Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 5, 2006 Author Share Posted July 5, 2006 Thanks Grace! Enjoy the fireworks!!! And a very happy 4th to both you and Shirley, too! I am so very optimistic about the new oncologist and options!! Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 5, 2006 Share Posted July 5, 2006 Hi All, Quick update for the day.... No word from the doctor from Commonwealth yet in regards to an apointment with Brigham's for RFA. However, Beth Israel finally called me back. The lady was claiming that she tried my cell phone both on Fri and Mon and all it did was ring once and go busy. Go figure. At least she got through today. She told me that the raditation onc took a look at my father's scans and history and he thinks that he can help with the liver mets via cyberknife Can you say Woo Hoo? The lady said that one of the secretaries is supposed to call today to schedule an appointment. The doctor is going on vacay soon so I hope she gets to me soon. Now I'm just glad that we're working on both RFA and cyberknife at the same time. Hopefully we can get an appointment soon for one of them. The doctor he saw and Commonwealth said that there's really no difference in the two as far as efficacy. Or at least I think that's what she said. I also called my father's insurance company (Tufts) to make sure that all these opinions will be paid for. I called a few weeks ago but I'm hypervigilant about insurance and reimbursement. The rep said thata all different opinions will be paid for and we don't even need to call and let them know in advance. And since he has a PPO, he doesn't even need a PCP referral. I knew that those higher premiums were good for something. Also, I made an appointment to get myself checked out at the doctors today at 6:30 pm. I just can't seem to completely get rid of this cough. Now my nose is stuffy too. Let's hope that I get some magic pills (antibiotics). Talk to everyone soon. Pray for call backs. Toodles, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 5, 2006 Author Share Posted July 5, 2006 Shirley, WOOOOO HOOOOOOOOO!!!! What great news on ALL fronts here. I am very, very happy to heat all of this especially the part about YOU making an appt, FINALLY!!! I should be around tonight and will look for you later to get caught up on everything. I am just so over joyed that there is so much positive news from you now. Praying for that to continue!!! Catch you later, gator! HUGS!!! Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 5, 2006 Share Posted July 5, 2006 Hi All, Update. I called Beth Israel and they offered me an appointment for tomorrow at 8:30 am. Yay! If I couldn't take that or another time that day, the next available would be 7-18. Since my sup is on vacay, I told the program director about it and he said to not worry about it. I told him that I will use holiday, comp or sick time. He said not to worry about the hours and that we can figure out something for the time card. The doctor at Commonwealth left a message at my home phone in Quincy. She's still working on getting us an appointment. I'm going to call her tomorrow and let her know that we got an apt at Beth Israel just to see what she says. Hopefully we can just take the first treatment option that has the earliest availabe date. That's all folks, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 5, 2006 Author Share Posted July 5, 2006 Oh wow, you just keep these great news stories coming and I will keep up the positive thinking and prayers!! What time do you need to be at Beth Israel? Prayers to parking space gods too!!! Catch you later, Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 5, 2006 Share Posted July 5, 2006 Hi, We'll probably get to Beth Israel at around 8ish maybe. His appointment is at 8:30, but I'm sure there will be lots of paperwork. The consult is supposed to take an hour or so. Pray for parking, although I think there may be garage. After I drop my father off at home, I'm going to have to go right to work so I don't miss that much of the day. Toodles, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 5, 2006 Author Share Posted July 5, 2006 Ok I posted a reply and clicked submit and POOF, it vanished and made me log back in.. Hmmm, computer demons! ANYWAY, Shirley Consider the parking prayers done! lol.. I am sending you more prayers for wonderful news tomorrow and positive thoughts and all that good stuff! Good luck with YOUR appt! Let me know.... Talk soon, Chris PS.. daughter has a download going here so my puter is slowwwwwwwwwwwer than normal.. Out here in the boonies all I can get is dial up which normally is really quite fine, but the downloads tend to wreak havoc with the speed. I WILL do my best to be on aim later though!! C Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 6, 2006 Share Posted July 6, 2006 Update from Beth Israel. We met with the radiation onc this morning and he said that cyberknife looks like the optimal option right now. I asked about RFA and he said that the onc at Beth Israel had a conference on my father's case and the consensus was that the tumor is too large for RFA to be completely effective. He said that we can still try to do it if we want but it may not get it all. The cyberknife coordinator is supposed to get authorization from insurance before we can schedule an apt. Crossing fingers that this would be a swift process and that the insurance company doesn't give us any issues. Just left a message for the onc from Commonwealth in regards to this recent visit to inform her of what this doc is saying. That all for now folks, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 6, 2006 Author Share Posted July 6, 2006 Hiya Shirley Wow I am really glad to hear that Beth Israel is agreeing to the cyber knife. Hopefully you will get the appt in the very, very near future! All of this in the past couple of days is so encouraging. I am just so glad you pressed on for a different opinion. I will catch up to you later... Prayers and positive thoughts continue!! Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 8, 2006 Share Posted July 8, 2006 Hey there, Good Grief. I called home today to find out if anyone got back to us for apts. My mother said no and I told her that I didn't receive any either. Then my mother starts talking about how she might get laid off soon and that nothing is certain yet and that I mustcontact them on Mon. to let them know the situation so that they can hurry up on the apts. My mother's main concern is losing insurance. Does anyone know if insurance is cut off right after employment terminates? Sometimes I feel like everything is just dumed in my lap. And it feels like after she tells me something like that, her job is done and now I have to make it better. Ugh is all I have to say. Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 8, 2006 Author Share Posted July 8, 2006 Hey Shirley Geesh! well this is not good news. I am not sure how the insurance deal works but you do have options regardless. Granted they might not be the BEST as far as coverage but they are there. MassHealth for one, and of course you or mom can look into Disability insurance as well. I have heard it said that as we the children get older the roles tend to be reversed and we become more of a parent. Not easy by any means! Chin up though, we will get through this. I will do anything and everything I can to help you out. Just let me know what you need. I think calling the dr's on Monday and getting them a heads up might be a good idea. It might be wise to ask them if there is any financial aid available through the various hospitals, etc that you can look into. I will catch up to you over the weekend I hope! More prayers for you and everyone!! Chris Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 11, 2006 Share Posted July 11, 2006 Small update, but update nonetheless. I called and harassed the cyberknife coordinator again to see if she had any luck getting in touch with insurance. Of course, she calls back while I was on my way to doing laundry. Luckily she left a message. She said that insurance should be all set and that now something else, I think the coordinator of preventative radiation is supposed to give me a call to schedule an apt for the mapping. She said the apt will probably be sometime in the next week or so. See if she had just called to let me know what has been done and what the next step is, then I woulnd't have to harass her every day. The lady that's supposed to schedule an apt is Sabrina. Now all I have to do is find her number so I can harass her. No word from the commonwealth doc yet, I'll give her a call later. Now to laundry, chores and beyond. Toodles, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 11, 2006 Author Share Posted July 11, 2006 lol well can I send harrassing thoughts to Sabrina then? Hey this is progress, no matter how small the step seems. Hopefully the rest will just fall into place now and everything will go smoothly! Good luck with the housework. Let me know if you finish, you can always come do mine after that if you want! lol Hugs Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted July 11, 2006 Share Posted July 11, 2006 Shirley, Keep on hanging in there. All I can tell you that the "devil is in the details"...it's all the steps to have to go thru to get to the final outcome. Grace Quote Link to comment Share on other sites More sharing options...
angelofcharlie20 Posted July 12, 2006 Share Posted July 12, 2006 Not much going on. The secretary from Commonwealth called to tell me that she's been harassing the secretary over at Brigham's and hasn't gotten anywhere. No word from Beth Israel yet. I did however get Serena's telephone number and have already left her a message. I'll leave her another one tomorrow. She'll get sick of me soon. And the only way to get me to stop calling is to call me back. My mother told me that my father's legs were a little weak yesterday. Thoughts? Feelings? I called home yesterday too and he said that he was doing alright. Praying for an appointment, Shirley Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 13, 2006 Author Share Posted July 13, 2006 Hey Shirley Sounds like you are in a holding pattern for the time being. Keep harassing and I will keep sending harassing thoughts too! lol (some humour as we can all use that now and again, eh?) Don't stop with leaving messages, you are right, eventually she will get tired of listening to your messages and call you back. I hate not having phone calls returned. Not only is it a professional courtesy, in this case it is even more. grrrrrr Not sure what to think about the weakness. Could be fatigue? You mentioned he had been out "people watching" maybe that is catching up to him along with all the other stuff he has been through in the past couple of weeks. Are you getting this insanely humid weather there? This is enough to make anyone feel that way. Might not hurt to touch base with the doctors to be sure of what is going on. Hopefully Grace will be along and maybe she will have more to offer on that. Prayers for the appointment SOON and positive thoughts, too.. Hugs Chris Quote Link to comment Share on other sites More sharing options...
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