Hi all,
Great news!! Cancer has not spread...aside from lymph node that is swollen on same side there is no evidence of any other cancer throughout Bob's body. YEAH!
Also FYI...in case you know about Michael Douglas ...I've read a bit about the cancer he has and it is different than Bob's...Michaels' is in the Larnyx and Bob's is back of tongue and tonsil. ...different areas. Just wanted you to know that.
We are so relieved there is no spreading. A HUGE White knuckle flight this process is!!!
Girls in tub...time for their bed..gotta go.
Monday, August 23, 2010
Wednesday, August 18, 2010
August 18, 2010 Telling girls and Treatment Dates
We decided since we have a better idea of what this treatment plan and outcome will most likely look like we opted to tell the girls this morning. Bob told them he has cancer in his throat and he is being treated by some of the best doctors in the world for this particular cancer. For a few reasons Olivia knows about cancer including that our friend Ann is undergoing chemo now for Lymphoma. She understands about the baldness and sickness from the medicine and that some cancers are worse than others...some are treatable some are not. We explained that Dr. Harrison is very optimistic that they will conquer this cancer. We left it open that if they have any questions to ask any time. We explained that we are very open to talking about Bob's cancer and upcoming treatments and will do our best to answer their questions honestly...if we do not know the answer we will do our best to find out. We explained it's not a secret and it will be a rough few months with daddy away for a lot of it. Olivia cried for some time...Natalie doesn't understand as much as Olivia does. It'll be a process. Olivia had a few more questions yesterday and was very open to telling her ballet teacher when she arrived at ballet camp that her daddy has throat cancer. I heard her say it as I was walking out of the room. Thankfully I gave Miss Dede a "heads up" last week. I'm glad Olivia feels free to talk about it and that Natalie will see her sister being open to talking about it.
Natalie has an upcoming appt with a Pediatric Ophthalmology appt in NYC on Aug 30. She was born with a spot on the white part of her eye and it's been watched by a specialist in Albany however during the last visit I decided it best to get another opinion. Dr. Zobel Ratner diagnosed it as a "freckle". We will go to NYC on Aug 29 since her appt is at 8am on Aug 30. If the girls want to go see where daddy will be we can take them there to see the space and meet the doctors, nurses and especially our angel Louise. (:
Bob went to work today and plans to work as long as possible. He may work out of the NYC office when he is there during the week.
I dealt with Albany Pathology today regarding the slides that were supposed to be sent 2 days ago...they were concerned who was going to pay the $8.40 to FedEx the pathology slides to Dr. Harrison...Oy! I assured Sandy in the lab that I would put a check in the mail and asked her to PLEASE send them today. She assured me that she would.
Louise called today with the treatment dates. Bob will have his radiation "dry run" on Tuesday Sept 7 and the treatments will begin on Wed Sept 8. The first night he spends the night in the hospital to receive the chemo and radiation.
Bob had his teeth cleaned today at his dentist in Albany in preparation for the beginning of treatments. He just happened to get an 11:00 appt the day after we arrived home from NY. Yet another appt falling into place! It's important to have this cleaning..going into this with your mouth in tip top shape.
My friend Asa helped me set the blog up today which will be of great assistance to me in keeping family and friends notified. School is going to start on Aug 31 and then weekly routine begins. Summer always seems to go by so quickly!
The girls were THRILLED this evening to care for Ann and Franks Goldendoodle puppy while Ann and Frank went to dinner. SO much fun! We LOVE Sophia.
Natalie has an upcoming appt with a Pediatric Ophthalmology appt in NYC on Aug 30. She was born with a spot on the white part of her eye and it's been watched by a specialist in Albany however during the last visit I decided it best to get another opinion. Dr. Zobel Ratner diagnosed it as a "freckle". We will go to NYC on Aug 29 since her appt is at 8am on Aug 30. If the girls want to go see where daddy will be we can take them there to see the space and meet the doctors, nurses and especially our angel Louise. (:
Bob went to work today and plans to work as long as possible. He may work out of the NYC office when he is there during the week.
I dealt with Albany Pathology today regarding the slides that were supposed to be sent 2 days ago...they were concerned who was going to pay the $8.40 to FedEx the pathology slides to Dr. Harrison...Oy! I assured Sandy in the lab that I would put a check in the mail and asked her to PLEASE send them today. She assured me that she would.
Louise called today with the treatment dates. Bob will have his radiation "dry run" on Tuesday Sept 7 and the treatments will begin on Wed Sept 8. The first night he spends the night in the hospital to receive the chemo and radiation.
Bob had his teeth cleaned today at his dentist in Albany in preparation for the beginning of treatments. He just happened to get an 11:00 appt the day after we arrived home from NY. Yet another appt falling into place! It's important to have this cleaning..going into this with your mouth in tip top shape.
My friend Asa helped me set the blog up today which will be of great assistance to me in keeping family and friends notified. School is going to start on Aug 31 and then weekly routine begins. Summer always seems to go by so quickly!
The girls were THRILLED this evening to care for Ann and Franks Goldendoodle puppy while Ann and Frank went to dinner. SO much fun! We LOVE Sophia.
Tuesday, August 17, 2010
August 17 WHAT A DAY!
We slept much better last night knowing this process was beginning. We arrived at the hospital at 9:15 a.m. Bob had to follow a no red meat, no dairy, no sugar, no peanuts and low/no carb diet since yesterday mid afternoon with nothing to eat or drink after midnight. This diet was to prepare for the PET scan.
Bob's first morning appt was for the "simulation" aka "sim". This appt is about 1 1/2 hours. This website http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation explains this process in detail.
The simulation "took longer" than expected because they got a late start.
After the "sim" we met with Dr. Culliney who is the Medical Oncologist who oversees the chemotherapy portion of the treatment. Bob will have Chemo on Day 1 of Week 1, Day 1 of Week 4 and Day 1 of Week 7.
After this meeting on to PET scan...I can tell you Bob was VERY hungry and thirsty at this point...it was well past lunch time...it was around 1:15 when he started... He then was fitted with his new mask and his masked head was fastened to the table so not to move...AND THEN he had to go into the "tube" for about 1/2 hour....http://www.radiologyinfo.org/en/info.cfm?pg=PET
Immediately following this test he was able to eat but time was ticking so he grabbed a quick low fat frozen yogurt at a street vendor outside the hospital, ate that then on to more meetings.
Dr. Verona was first to check the fit of his new fluoride trays. Then we met with a nutritionist and during that time was brought to the Speech/Language Pathologist. He has about 20 minutes of exercises to do with his mouth, jaw, tongue, neck and throat for the entire length of treatment. Radiation makes muscles tight and can shrink them so it's very important to do these exercises even when it hurts.
After finishing with speech/voice/saliva test we went to Dr. Culliney's nurse Daisy to pick up paperwork that is necessary to have ready the day treatments begin.
We were on our way out at 5:10 thinking we missed meeting with the social worker. He did not answer his phone so we decided to call it a day. As we were getting on the elevator out pops Darren the social worker saying he had 15-20 minutes he could meet before we leave. We talked to him about talking to the girls and possibility of staying at the Hope Lodge. http://www.hopelodgenyc.org/
We left at 5:40, walked a bit, found a restaurant to eat at--German food-- then took a cab back to the University Club to pick up Bob's bag, walked to parking garage to get car and homeward bound. We arrived home around 10:45.
WOW what a day! It all went quite smoothly for being so last minute. Thank you Louise! She arranged all of it!
Bob's first morning appt was for the "simulation" aka "sim". This appt is about 1 1/2 hours. This website http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation explains this process in detail.
The simulation "took longer" than expected because they got a late start.
After the "sim" we met with Dr. Culliney who is the Medical Oncologist who oversees the chemotherapy portion of the treatment. Bob will have Chemo on Day 1 of Week 1, Day 1 of Week 4 and Day 1 of Week 7.
After this meeting on to PET scan...I can tell you Bob was VERY hungry and thirsty at this point...it was well past lunch time...it was around 1:15 when he started... He then was fitted with his new mask and his masked head was fastened to the table so not to move...AND THEN he had to go into the "tube" for about 1/2 hour....http://www.radiologyinfo.org/en/info.cfm?pg=PET
Immediately following this test he was able to eat but time was ticking so he grabbed a quick low fat frozen yogurt at a street vendor outside the hospital, ate that then on to more meetings.
Dr. Verona was first to check the fit of his new fluoride trays. Then we met with a nutritionist and during that time was brought to the Speech/Language Pathologist. He has about 20 minutes of exercises to do with his mouth, jaw, tongue, neck and throat for the entire length of treatment. Radiation makes muscles tight and can shrink them so it's very important to do these exercises even when it hurts.
After finishing with speech/voice/saliva test we went to Dr. Culliney's nurse Daisy to pick up paperwork that is necessary to have ready the day treatments begin.
We were on our way out at 5:10 thinking we missed meeting with the social worker. He did not answer his phone so we decided to call it a day. As we were getting on the elevator out pops Darren the social worker saying he had 15-20 minutes he could meet before we leave. We talked to him about talking to the girls and possibility of staying at the Hope Lodge. http://www.hopelodgenyc.org/
We left at 5:40, walked a bit, found a restaurant to eat at--German food-- then took a cab back to the University Club to pick up Bob's bag, walked to parking garage to get car and homeward bound. We arrived home around 10:45.
WOW what a day! It all went quite smoothly for being so last minute. Thank you Louise! She arranged all of it!
Monday, August 16, 2010
August 16, 2010 Meeting Dr. Harrison and team
What a day this has been..an emotional roller coaster to say the least. The bottom line is Bob feels VERY well taken care of by Dr. Harrisons staff...I also feel very taken care of by the staff.....AMAZING is my explanation of the whole "operation". Everything is in one building and they all work together very well. Louise his secretary is an angel. SHE helps in making this unfortunate process bearable.
Bob's tumor is at Stage 4 BUT it is VERY treatable with chemo and radiation. Dr. Harrison said DO NOT think about the stage 4 part...MANY/MOST patients with this particular cancer arrive in his office at Stage 4 and he has MUCH experience in treating this. Surgical removal of tumor will not be done since it would be very disfiguring and the results with surgery vs. chemo/radiation are about the same. At one point we had 5 doctors in the exam room at the same time and no one balked at this diagnosis...Dr. Harrison is VERY optimistic and positive that they will conquer it. ....though there is a process to this success.
Bob and I are staying in NY again tonight so he can have a bunch of testing tomorrow and I can meet with a social worker about telling the girls and also a nutritionist. It turns out that Dr. Harrison leaves in about a week and will be gone nearly 2 weeks on vacation yet ANOTHER reason todays appt was a blessing. Thank you Julianne, Thank you LOUISE, Thank you GOD,
After the meeting with Dr. Harrison and team Bob met with Dr. Verona who will be the dentist overseeing his dental needs before and for some time after treatments are complete. He did impressions of Bob's mouth to make trays for Bob to give himself fluoride treatments every night before bed. As you can imagine radiation affects the teeth, muscle and bone so they take preventative measures to limit this. Bob also has jaw exercises to do daily.
He will have several tests tomorrow including PET scan and "simulation" which takes about an hour. The simulation is an intregal part of the treatment planning by Dr. Harrison. Usually all these pre treatment appointments take approx, 2 weeks however they are doing their best to get them all in today and tomorrow and maybe one other day this week so Dr. Harrison can plan his treatment before he leaves on vacation... Bob will be doing all treatments in NYC Monday - Friday and home on weekends. He will investigate working out of the NY office until he feels he can't due to trauma to his throat.
After leaving the hospital today around 2 we went to Hope Lodge to see where it was.
This is going to be quite grueling for him and stressful for the family but we have great optimism that we will have a good outcome.
Thanks for all support. I will be working on a special website for future updates which will make writing updates and friends and family can check when they want to. I'll let you know when it's up and running.
Please keep praying.
Bob's tumor is at Stage 4 BUT it is VERY treatable with chemo and radiation. Dr. Harrison said DO NOT think about the stage 4 part...MANY/MOST patients with this particular cancer arrive in his office at Stage 4 and he has MUCH experience in treating this. Surgical removal of tumor will not be done since it would be very disfiguring and the results with surgery vs. chemo/radiation are about the same. At one point we had 5 doctors in the exam room at the same time and no one balked at this diagnosis...Dr. Harrison is VERY optimistic and positive that they will conquer it. ....though there is a process to this success.
Bob and I are staying in NY again tonight so he can have a bunch of testing tomorrow and I can meet with a social worker about telling the girls and also a nutritionist. It turns out that Dr. Harrison leaves in about a week and will be gone nearly 2 weeks on vacation yet ANOTHER reason todays appt was a blessing. Thank you Julianne, Thank you LOUISE, Thank you GOD,
After the meeting with Dr. Harrison and team Bob met with Dr. Verona who will be the dentist overseeing his dental needs before and for some time after treatments are complete. He did impressions of Bob's mouth to make trays for Bob to give himself fluoride treatments every night before bed. As you can imagine radiation affects the teeth, muscle and bone so they take preventative measures to limit this. Bob also has jaw exercises to do daily.
He will have several tests tomorrow including PET scan and "simulation" which takes about an hour. The simulation is an intregal part of the treatment planning by Dr. Harrison. Usually all these pre treatment appointments take approx, 2 weeks however they are doing their best to get them all in today and tomorrow and maybe one other day this week so Dr. Harrison can plan his treatment before he leaves on vacation... Bob will be doing all treatments in NYC Monday - Friday and home on weekends. He will investigate working out of the NY office until he feels he can't due to trauma to his throat.
After leaving the hospital today around 2 we went to Hope Lodge to see where it was.
This is going to be quite grueling for him and stressful for the family but we have great optimism that we will have a good outcome.
Thanks for all support. I will be working on a special website for future updates which will make writing updates and friends and family can check when they want to. I'll let you know when it's up and running.
Please keep praying.
Friday, August 13, 2010
August 13 "Angels" on earth
BEFORE READING THIS ONE PLEASE READ AUGUST 9....I'm quite new at this blogging thing and I'm not quite sure why they aren't in the order I typed them in....any ideas on how to fix it???? (: Asa??????
Here is the latest....
Here is the latest....
During a brief lemonade stand that the girls REALLY wanted to have ( in an hour we had 3 customers and 2 visitors (: ) Wednesday afternoon our friend and neighbor Julianne --she has a home in Alford as well as NYC--- stopped while driving by to say hi
and asked how I was...I, of course, barely held back tears and she KNEW something was up..I told her I'd send her an email...I sent her an email Wed night. Keeping this to myself in front of the girls has been challenge.
Julianne sent me an email first thing Thursday morning and explained that her "new" son in law Dr. Devin Okay DDS--her daughter married in June-----is a maxillofacial oral surgeon who specializes in tongue reconstruction....he specializes in cancer of the mouth, jaw and tongue reconstruction. ....WOW I was floored. This is her son in law.
Julianne put a call and email into him ......when Devin responded he advised that Bob go to see Dr. Louis Harrison....http://www.docnet.org/physicians/phys_bios.aspx?phys_id=871
After speaking to Louise in Dr. Harrisons office I learned that Dr. Harrison only sees new patients on Mondays and the first appt they had was Aug 23 ...Louise then requested a "history" as part of the appt making process. After giving her Bob's history she indicated she would do everything she could to get him in this Monday August 16 and that she did!
Thank you girls for having a lemonade stand! Thank you Julianne! Thank you Louise! Thank you Dr. Harrison. Thank you God!
At one point, in the midst of my tears Louise said "I'm not saying this because I work here I just want you to know you are coming to the right place".....I was able to get an appt for THIS Monday August 16 at 9 am. We will go to the city Sunday to spend the night.
on a side note..... I think the office was a bit floored because it "seemed" I called in on Dr.Harrison's DIRECT LINE! (: Of course I had no idea what number Julianne gave me. They answered the phone "Dr. Harrisons line"...I'm not sure about what number I was on however I do know it was a very successful phone call!
My mom will come Sunday and we will go to the city Sunday afternoon and stay over so we are there first thing in the morning for the 9am appt.
So this is where we are at this point.
Bob is at his PGA Golf event..made it there fine and is having a nice time.
We are not saying anything to the girls until we know more.
I feel good we have the next step set up and it's so soon. Progress...
Monday, August 9, 2010
August 9, 2010 Biopsy at St. Peters in Albany
AFTER READING THIS ONE PLEASE READ AUGUST 15. I'm unclear why they are out of the order I typed them....hmmmmmm.
Monday August 9 we spent a good portion of the day at St.Peters Hospital in Albany
Monday August 9 we spent a good portion of the day at St.Peters Hospital in Albany
it is NOT good news. PLEASE PLEASE do not share with ANYONE at this point....
We do not want to say anything to the girls until we know more about what treatment will be so I can't have this information out so please keep it to us.
They basically know daddy went in to have a test on Monday and mommy had to drive him home because of the medication that he had to have for the test he wasn't allowed to drive.
They certainly know he's had a sore throat for a while and they know he still has one.
Olivia knows about cancer because in April a close friends mother in law died very quickly ...about 6 weeks....of pancreatic cancer. She was too sick to get treatment by the time
they found it. Olivia is a VERY perceptive girl...she's always studying what is going on around her even if it doesn't look like she is she pays close attention!
We all know there are different types of cancer which are caught at different stages ...that's a lot for little ones brains to compute...especially Natalie... until we have more information
I/we just don't see the sense in telling them much except daddy is trying to find out why his throat has been sore.
it's metastisized (sp) until more testing.... although one lymph node near the site doesn't look good but hasn't been tested. The cancer has not been staged at this point.
Oral cancer stays hidden without symptoms for quite some time and then he's lived with the symptoms for probably more than a year .....a lot of time has passed for this growth to cause damage...and that it has. It's fairly large...on back of tongue, tonsil and one other area which I think is the soft palate near tonsil???? but not sure. Doctor said HE wouldn't even be able to perform this surgery it's so complicated. He suspects they won't do surgery just chemo/radiation. We'll know more after Sloane.
We are in for a difficult journey on SO MANY different levels.
Please understand at this point most of my correspondence will be via email. Talking on phone is difficult and risky with the girls here all day....plus I need to stay
focused and not talking about things that could make me cry. Trust me I have cried...and cried...but I have to do it privately. I only have to hold it in for periods of time
then I can release it.... All this is very scary. and sad.
At this point I'm researching all I can for when we go to SLoane. I think it best Bob not do all the reading for research. ...it's pretty overwhelming. I fill him in on what I learn...filtered of course. I'll keep it as positive as possible.
please lets keep our conversations when the girls are right there about normal friend/neighbor talk and not asking about Bob..I feel such a tremendous responsibility to "do this the right way" ....meaning tell them enough information so not to "hide it" but not so much it would terrify them at this early stage. We need more information before we can tell them more. There's no sense in them worrying until we know the plan of action.
Please say prayers.
Thursday, August 5, 2010
August 5, 2010 CT scan results
Bob has had a sore throat, "strained voice" and some taste bud issues for quite some time so he's having it explored. He went for a CT scan ...
Bob's CT scan results sounded like this.....
This is what "MIchelle" from Dr. Michael Byrd's office--Albany NY---read off the report from Doctor when SHE called Bob with the results.
"found assymmetric soft tissue right tongue base retro molar and tonsilar pilar"
He was told to continue with Biopsy on Monday August 9
I encouraged him to call the ENT doctor to get "real words" regarding the results of CT scan. I feel the doctors get paid enough to talk to the patient on phone for 2 minutes.
He spoke to the doctor yesterday but didn't get much more info except that the results were "concerning". He basically said a mass was found at back of tongue, tonsil and soft tissue near tonsil and a biopsy was in order.
At this point it is a good possibility that Bob has Throat Cancer.
He went off the med Plavix (blood thinner) yesterday..he needs to be off that about a week before biopsy surgery. They also wanted him to have an EKG before surgery.
He will go under general anesthesia to have biopsy which will be on Monday August 9, 2010. Went for an EKG yesterday August 8, 2010 at St. Peters which was a "not a smooth appointment" to say the least Bob's going to complain to hospital..the woman doing it was "struggling" to say the least.
I encouraged him to call the ENT doctor to get "real words" regarding the results of CT scan. I feel the doctors get paid enough to talk to the patient on phone for 2 minutes.
He spoke to the doctor yesterday but didn't get much more info except that the results were "concerning".
So now we wait for biopsy results. This is awful! The waiting is SO HARD.
I've taken some of my pent up energy and contacted Sloane Kettering in NYC. Bob is all set with a chart there so as soon as results come in from biopsy they will be forwarded to Sloane Kettering and he should have an appointment with appropriate doctor within 1-2 weeks.
Please don't talk about this in front of any children...because until we know something for sure there is no since in us telling the girls anything....they know daddy has had a sore throat for a while....at this point we don't know much and they would join us in the "white knuckle flight".
Bob's CT scan results sounded like this.....
This is what "MIchelle" from Dr. Michael Byrd's office--Albany NY---read off the report from Doctor when SHE called Bob with the results.
"found assymmetric soft tissue right tongue base retro molar and tonsilar pilar"
He was told to continue with Biopsy on Monday August 9
I encouraged him to call the ENT doctor to get "real words" regarding the results of CT scan. I feel the doctors get paid enough to talk to the patient on phone for 2 minutes.
He spoke to the doctor yesterday but didn't get much more info except that the results were "concerning". He basically said a mass was found at back of tongue, tonsil and soft tissue near tonsil and a biopsy was in order.
At this point it is a good possibility that Bob has Throat Cancer.
He went off the med Plavix (blood thinner) yesterday..he needs to be off that about a week before biopsy surgery. They also wanted him to have an EKG before surgery.
He will go under general anesthesia to have biopsy which will be on Monday August 9, 2010. Went for an EKG yesterday August 8, 2010 at St. Peters which was a "not a smooth appointment" to say the least Bob's going to complain to hospital..the woman doing it was "struggling" to say the least.
I encouraged him to call the ENT doctor to get "real words" regarding the results of CT scan. I feel the doctors get paid enough to talk to the patient on phone for 2 minutes.
He spoke to the doctor yesterday but didn't get much more info except that the results were "concerning".
So now we wait for biopsy results. This is awful! The waiting is SO HARD.
I've taken some of my pent up energy and contacted Sloane Kettering in NYC. Bob is all set with a chart there so as soon as results come in from biopsy they will be forwarded to Sloane Kettering and he should have an appointment with appropriate doctor within 1-2 weeks.
Please don't talk about this in front of any children...because until we know something for sure there is no since in us telling the girls anything....they know daddy has had a sore throat for a while....at this point we don't know much and they would join us in the "white knuckle flight".
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