How Long Has This Been Goin' On'

2

Comments

  • VanessaSLO
    VanessaSLO Member Posts: 283
    Time frame

    My Dad - Base of tongue with multiple lymph nodes.

    Diagnosed - May 30th 2012

    Making and fitting the mask - mid of July 2012

    First chemo and rad - the end fo July 2012.

     

    So, it was two months before he started treatment. During this time he felt a swollen lymph node on the other side of his neck. At the time of diagnosis he had confirmation that only left side of the neck was cancerous (left lymph nodes and base of tongue). But waiting period made cancer progress a bit and the node was visible also on the other side. It freaked me out. But the doctor said that ther expected that and that it will not do much harm to him. Well.... I could do nothing about that. Waiting part is the worst, I know.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    Mr. T

    One thing is for sure Mr T., the growth will never be as "thick as a brick", it will be out of you before you know it.

    regards

    Michael

    Here's Hoping

    Hi Michael,

    I'm looking forward to getting "Jack" out of my body and here's to not having it return as "Aqualung"!

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Laralyn said:

    Mine moved quickly...

    ...but then again, so did the cancer. I had a clear CT scan of an enlarged lymph node and nothing showing when there was a tickle in my throat in late November 2011, and by mid-March 2012, there was a visible mass pressing on the back of my tongue from the soft palate. I remember my radiation oncologist mentioning a trial starting "in a couple months" at the hospital where he practiced, but he said, "You can't wait." 

    I was diagnosed around March 25. The oncologist met with me a couple days later, and sent me straight to the dentist. They pulled a wisdom tooth and while it was healing, the technicians did the pre-radiation planning scans. The oncologist came straight from the airport (coming from a conference) on a Saturday to do the mapping so they could start treatments the  first day it was feasible (waiting for the wisdom tooth extraction to heal).

    I went from diagnosis to my first radiation and chemo treatment in two weeks. I think it was a special case, though. 

    A big part of the process is trust. I'm kind of a control freak for many aspects of my life so I had to learn to trust the medical professionals to understand the situation and do what was best for me. They did, and I'm sure the folks treating you will too. Get a second opinion for sure, though, because being comfortable with the people treating you is really important. You'll also be seeing these folks A LOT over the next few months. :-)

    Life in the Fast Lane

    Hi Laralyn,

    Wow, that was fast! I'm heading out shortly to Baltimore and Johns Hopkins for a 2nd opinion. I'm not feeling so warm and fuzzy about the treatment center I have to go to. If I were in a financial position to do so, I would take off two months and hole up in Baltimore so I could be treated there. I have a friend who recently went through this. He had BOT HPV related SCC. He couldn't speak any higher of the team at Johns Hopkins. He's now 18 months post treatment and still NED.

    He said the entire team, from surgery to nutrition and even dentistry met all together in a room with him. All were there to answer questions and speak to him about his treatment plan before they started. Talk about instilling confidence! You're right though. Cancer takes so much control away from us and forces us to put our lives into someone elses hands. If you're going to do that, you want to feel some level of trust. 

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Pam M said:

    Anticipa a tion - It's Making Me Wait

    You guys have got me humming - I started singing as soon as I saw the thread title. 

    T2N2MO Base of tongue - both affected nodes on right side

    Sept 25 or 6, 2009 - found a lump in my neck (it was really big - how did I not find it earlier?) - Urgent care gave me antibiotics

    about 3 weeks later, PCP sent me to ENT - FNA and scope - test sent out to check for Cat Scratch Fever (really)

    Oct 25 or 6 - Open biopsies and tonsillectomy - period between surgery and start of chemo sucked - pain and inactivity on the battle front, combined with uncertainty on where to go for treatment made me crazy

    Mid Nov - Decision made, PICC line installed the next day, Induction Chemo started

    Dec 19 - hospitalized - neutropenic fevers of unknown origin - feeding tube placed Christmas Eve (didn't need it then, but since I was already in the hospital . . .)

    Late Jan, 2010 - mask made, simulation run - chemo rads started the following week

    Mid March - rads done

    Dec 21, 2010 - Radical Modified Neck Dissection done to finish the job

    April, 2011 - CLEAN SCANS!

    I have been told that most cancers develop over a period of 5 to 40 years - wow.

     

     

    No Hiding Place - Foreigner

    Hi Pam,

    5-40 years? That's an interesting bit of information. The doctors have all said the reason that I have an unknown primary is that it either been consumed by my body or hiding in a sub-mucousal area in my head and neck. When I think about things in retrospect, back in the summer of 2009 I developed a very bad case of swollen lymph nodes on the left side of my neck. We're talking chipmunk cheeks size. I recall specifically the night it started when I had a very strange feeling and burning in the back of my mouth. I went to the doctor and they swabbed me and said it was strep throat. Funny though, I didn't have any throat pain at all. The antibiotics did get rid of the swelling though. Now, as all this is unfolding in the present, I'm wondering if that was the start of this. By the time I noticed something wasn't right last August, "Jack" had probably been in me for some time.

    "T"

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    CivilMatt said:

    as I remember

    T,

     

    Forever etched in my Brain (and written down for when I don’t have a brain)

     

    Nov. 11, 2011 – felt lump in neck while shaving

    Nov. 14, 2011 – appt. with GP, told to wait a week to watch

    Nov. 15, 2011 – blood test

    Dec. 7, 2011 – ENT, FNA (twice)

    Dec.  12, 2011 – surgery neck and tongue

    Dec. 23, 2011 – you have CANCER!

    Dec. 29, 211 – meet rad onc, watch video, take picture IT IS ALL TO REAL!

    Jan. 3, 2012 – meet chemo onc , meet ERBITUX!

    Jan. 5, 2012 – mask making 101

    Jan. 12, 2012 – PICC placement

    Jan. 13, 2012 – loading dose Erbitux

    Jan. 19, 2012 – colonoscopy, endoscopy, PEG installed

    Jan. 19-30, 2012 – hospital stay, Ileus lower tract shut-down for 12 days

    (delays treatment for 2 weeks)

    Feb. 6, 2012 – start rads

    Feb. 10, 2012 – start regular Erbitux

    Feb. 27, 2012 – 2nd PEG

    March 23, 1012 – finished rads & Erbitux

     

    End of December wife finds H&N forum, starts getting ready for inevitable.  Drinking water and swallowing becomes our mantra (best advice I could get from veterans)

     

    There you go, I hope it helps you stay mellow.

     

    Matt

    Patience - G&R

    Hi Matt,

     

    Thanks for the info. Although I've mellowed considerably in the last 7 years, I'm still a type A personality and one of the downfalls is a lack of patience in certain situations, especially those that relinquish my control. That's part of the challenge for me. I have my moments of realtive calm and acceptance but sometimes...... ;)

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Life in the Fast Lane

    Hi Laralyn,

    Wow, that was fast! I'm heading out shortly to Baltimore and Johns Hopkins for a 2nd opinion. I'm not feeling so warm and fuzzy about the treatment center I have to go to. If I were in a financial position to do so, I would take off two months and hole up in Baltimore so I could be treated there. I have a friend who recently went through this. He had BOT HPV related SCC. He couldn't speak any higher of the team at Johns Hopkins. He's now 18 months post treatment and still NED.

    He said the entire team, from surgery to nutrition and even dentistry met all together in a room with him. All were there to answer questions and speak to him about his treatment plan before they started. Talk about instilling confidence! You're right though. Cancer takes so much control away from us and forces us to put our lives into someone elses hands. If you're going to do that, you want to feel some level of trust. 

    "T"

    I Can't Drive 55....

    Good luck to day bro, hoping you have a warm fuzzy by the end of the day...

    Best ~ John

  • Laralyn
    Laralyn Member Posts: 532
    fishmanpa said:

    Life in the Fast Lane

    Hi Laralyn,

    Wow, that was fast! I'm heading out shortly to Baltimore and Johns Hopkins for a 2nd opinion. I'm not feeling so warm and fuzzy about the treatment center I have to go to. If I were in a financial position to do so, I would take off two months and hole up in Baltimore so I could be treated there. I have a friend who recently went through this. He had BOT HPV related SCC. He couldn't speak any higher of the team at Johns Hopkins. He's now 18 months post treatment and still NED.

    He said the entire team, from surgery to nutrition and even dentistry met all together in a room with him. All were there to answer questions and speak to him about his treatment plan before they started. Talk about instilling confidence! You're right though. Cancer takes so much control away from us and forces us to put our lives into someone elses hands. If you're going to do that, you want to feel some level of trust. 

    "T"

    Good luck at the meetings! If

    Good luck at the meetings! If you like the team at Johns Hopkins, could you ask them for financial resources that might allow you to get treated there? Is there any way you could work remotely? 

    I was treated at a small regional hospital, but was lucky enough to have a recognized H&N expert practicing there. If you don't end up at Johns Hopkins, don't hesitate to ask questions here. We're not (usually) medical experts, but we can tell you what our treatment entailed and that might help you ask questions. For example, I was surprised to find that the radiation mouthguards that were standard in my treatments weren't even mentioned to a couple people as a part of their treatments!

    I know the delays feel long when you're in the middle of them. Take advantage of the time as much as possible: see good movies, get some sun, and eat your favorite foods! :-)

  • amy_h414
    amy_h414 Member Posts: 98
    fishmanpa said:

    Life in the Fast Lane

    Hi Laralyn,

    Wow, that was fast! I'm heading out shortly to Baltimore and Johns Hopkins for a 2nd opinion. I'm not feeling so warm and fuzzy about the treatment center I have to go to. If I were in a financial position to do so, I would take off two months and hole up in Baltimore so I could be treated there. I have a friend who recently went through this. He had BOT HPV related SCC. He couldn't speak any higher of the team at Johns Hopkins. He's now 18 months post treatment and still NED.

    He said the entire team, from surgery to nutrition and even dentistry met all together in a room with him. All were there to answer questions and speak to him about his treatment plan before they started. Talk about instilling confidence! You're right though. Cancer takes so much control away from us and forces us to put our lives into someone elses hands. If you're going to do that, you want to feel some level of trust. 

    "T"

    treatment

    The lack of response is totally unacceptable. Would you be able to drive in to Fairfax Hospital? Of course Hopkins is the cream of the crop, but too far for you to drive for daily treatment. My husband was treated at Fairfax - one of the radiation oncologists is a Head and Neck specialist.

     

  • Grandmax4
    Grandmax4 Member Posts: 723
    Know exactly what you mean

    I was dx in September 2011, saw my Fantastic surgeon , met his team in October 2011, I remember telling Him, we have a trip to Chicago planned, should I cancel? No, no go and have fun..really?!! Anyway, then came scans,tests, a meeting with a Dr to determine if I was able to have surgery, etc,etc...my surgery, done by the de vinci robot, was done November 2, 2011. I was lucky and blessed that none of the nodes showed cancer, so avoided chemo and radiation...I'm due for a check-up in February 2013, I can't say I'm completely without worry, but, I stay so busy...babysit my 4 year old Grandson, that I don't dwell on it...Good luck, I hope you are able to do all you have planned, work, etc~~please keep us up-dated~~Peace 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    amy_h414 said:

    treatment

    The lack of response is totally unacceptable. Would you be able to drive in to Fairfax Hospital? Of course Hopkins is the cream of the crop, but too far for you to drive for daily treatment. My husband was treated at Fairfax - one of the radiation oncologists is a Head and Neck specialist.

     

    Funny you mentioned Faifax

    Hi Amy,

    It's interesting you brought that up. The oncology nurse I met with suggested Dr Gopal Bajaj. He was a Head and Neck specialist at Johns Hopkins. I have some major decisions to make but that's definitely on my radar.

    "T"

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    I Can't Drive 55....

    Good luck to day bro, hoping you have a warm fuzzy by the end of the day...

    Best ~ John

    Warm and Fuzzy Indeed!

    Hi John and everyone,

    An update on my visit to Johns Hopkins.

    Impressive is an understatement! I walked into registration, signed a privacy agreement and got a bar code badge. I then walked into the the outpatient area, scaned my badge and had barely turned around when a nuse said "Mr "T"?"

    I was taken back, BP taken and weighed and then to an examination room. Within a couple of minutes (literally), a "TEAM" of doctors entered the room. A Surgical Oncologist (who happened to be my friend's doctor), a Medical Oncologist, a Radiation Oncologist, a Speech/Language Pathologist, an Oncology Nurse/Manager and the Center Coordinator all were there. I was poked and prodded more in the next 25 minutes than I had been since this whole thing started! Everyone at The Sidney Kimmel Center specializes in Head and Neck Cancer 24/7/365.

    They knew my background and had reviewed all the slides, tests, images etc. They were stillwaiting on a couple of test results concerning HPV but what they saw thus far didn't indicate it. Knowing what I do for a living, they were particulary concerned and interested in preserving my voice.

    Their assessment was 180* different then what I got at Winchester. They recommended robotic surgery (selective neck dissection) to remove the tumor. In their words "If we can get 99% of it out of you then that's less treatment we need to subject you to". If the tumor is still intact (encased), chemo may not be necessary. They also want to do robotic biopsies of the back of my tongue and larynx as several of the doctors saw and felt something worth checking into. With the cutting edge technology they have, they're able to identify the primary in better than 60% of the cases.

    On review of the recommended therapy from Winchester, they were concered that irradiating such a large area could have negative and permanent ramifications on my swallowing ability and voice. Also, chemo in conjunction with that strong of radiation program could possibly put my overall heart health at risk. Basically, they're saying why do something that doesn't need to be done?

    I still haven't heard back for the Head of Oncology at Winchester Mediacal Center. I called the Radiation and Chemo Oncologists office and told them to put the scheduling on hold as I need to make a decision on the direction of my treatment.

    Johns Hopkins wants to schedule the surgery in appoximately 3 weeks. There will be a few weeks recovery from that and then treatment.

    Choosing Johns Hopkins for my treatment means several things. In my opnion, a much better chance of surviving! It also means not working at all during the treatment as I would have to be in Baltimore 5 days a week. There are several unknowns financially but they do have free housing. I may have to look at alternative assistance etc. I'd also have to find someone to take care of our boy Socrates (Pixie Bob) while we're away as my partner will have to be with me.

    I'm heading up to visit family and friends this weekend and I'll take some time to try and sort out everything.

    Ohhh... by the way. I asked them at Johns Hopkins the time question and the average time between diagnosis and treatment is 4-9 weeks depending on the situation. They weren't too concerend that "Jack" was going to multiply like rabbits in the next few weeks.

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    Thoughts...

    T,

    I remember my loved one feeling the same way as you and it was driving him crazy. Someone (think it was Billie67) said she felt the same way and her doctors told her that it doesn't grow as fast as our minds like to think it does. Knowing and thinking that really eased our minds. It's swollen right now and is to be expected. His appeared bigger prior to tx also. Try not worry, they will get it very soon.

    ~Cureitall....NEVRSTP Fighting..

    BTW....Love Tom Petty...Song that comes to mind is "I Won't Back Down".

     

    I do a couple....

    ...Tom Petty songs in my set. My fave is a version of "Free Fallin'". My own original take on the tune. Goes over like gang busters! :)

    I'll have to check the T&C but maybe I can post a link to a live performance vid...

    "T"

  • sassysrice
    sassysrice Member Posts: 117
    Every place is different

    As John said it all depends on where you live and how the center is run. Jeff saw the ENT on Nov 13 biopsy on Nov 19th. Nov 28  met Rad dr had mask made and got schedule for 35 nukes. Started on Dec 11. The doctor gave him 2 weeks to put on a few pounds.

    Met Chemo dr Dec 5 and schedules 7 weekly chemo on Fridays with the first starting Dec 14.  We will be done Jan 31st. Don't know about follow up tests yet.

    We have an appt with Chemo Dr Feb 8 and ENT Feb 22.

    I hope by the time I post this you got your schedule. But take this time to eat eat and eat especially all the foods you love and wouldn't normally eat like ice cream cake for breakfest and hot fudge sundae's at midnightTongue Out

    Sue

  • amy_h414
    amy_h414 Member Posts: 98
    fishmanpa said:

    Funny you mentioned Faifax

    Hi Amy,

    It's interesting you brought that up. The oncology nurse I met with suggested Dr Gopal Bajaj. He was a Head and Neck specialist at Johns Hopkins. I have some major decisions to make but that's definitely on my radar.

    "T"

     

    Bajaj

    He was my husband's doc. I really liked him, he's a very nice man and seemed to know what he was talking about. Everyone in the radiation dept at Fairfax was very kind.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    Every place is different

    As John said it all depends on where you live and how the center is run. Jeff saw the ENT on Nov 13 biopsy on Nov 19th. Nov 28  met Rad dr had mask made and got schedule for 35 nukes. Started on Dec 11. The doctor gave him 2 weeks to put on a few pounds.

    Met Chemo dr Dec 5 and schedules 7 weekly chemo on Fridays with the first starting Dec 14.  We will be done Jan 31st. Don't know about follow up tests yet.

    We have an appt with Chemo Dr Feb 8 and ENT Feb 22.

    I hope by the time I post this you got your schedule. But take this time to eat eat and eat especially all the foods you love and wouldn't normally eat like ice cream cake for breakfest and hot fudge sundae's at midnightTongue Out

    Sue

    The Food Bucket List

    Hi Sue,

    Sounds like you guys are humming along in treatment. My very best wishes to your husband for a positive outcome.

    I mentioned in my first post about eating all the foods I want to eat before I start treatment and I've been doing so and will continue to do so until I physically can't or when my tatse buds are fried. This will include healthy amounts of Thai food... spicy please... hurt me don't kill me hot! My gauge is, if it make my nose run, it's hot enough :) I do have a weakness for ice cream. Breyers please! 

    I'm encouraged by the many that have said my taste will come back. I will be counting the days when that time arrives ;)

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Decisions, decisions!

    This evening at 5:30pm I got a call from the Head of Oncology at Winchester Medical. He told me they had finished the initial planning and it looked good for me to start Wednesday of next week. All they had to do was get the OK from the Radiation Oncologist. 

    I asked if they had contacted Chemo Oncology and when my chemo would start. He didn't have an answer and stumbled on the question. He didn't know that I had already called the Radiation Oncologist and the Chemo Oncologist and asked that they put everything on hold while I decide on what path to take in treatment several hours earlier. When I called the Chemo Oncologist's office, I was put through to a nurses voice mail and left a message at around 2pm this afternoon. The call was not returned. 

    After he finished speaking, I informed him on what had taken place as well as my appointment and 2nd opinion at Johns Hopkins. I also, as nurturingly as I could, let him know that his lack of follow up and the fact that it seems as if one hand doesn't seem to know what the other is doing, has severely shaken my confidence in their ability to treat me. My partner has had her doubts as well as she's been with me for every appointment. 

    I have many aspects of my life that have to be arranged and accounted for to make treatment at Johns Hopkins work. My employment situation is one. I'm fortunate that I truly believe I can work something out with my boss to be able to take medical leave for treatment. The law actually protects me and he would be compensated by the government while I'm undergoing treatment. I'm not a man of means by any stretch of the imagination but have family that are stepping up to help a bit. I believe I can eek by financially while getting treatment. 

    I've made the decision to seek my treatment at Johns Hopkins. As the 3rd highest rated cancer center in the nation, I stand the best chance to eradicate "Jack" from my system and retain the best quality of life. I can't tell you how comforting having all those Knights and Knightesses in white all standing around me looking down my throat made me feel ~lol~ Sounds funny but when you hear things like "Go back...down... yes... right there... do you see that on the anterior edge?"... and then three different fingers poking down your throat affirming something they suspect, it instills a bit of confidence these folks know what they're doing.  

    As it stands now, I'll be hearing from the Surgical Oncologist next week to schedule the surgery. Ironically it will fall very close to my 54th birthday. Nice present eh? Then it will be about three weeks of healing before treatment starts. It could range from rads only to a combination of chemo and rads but that will remain to be seen. Regardless, I feel much more confident and safer with the path I've chosen and know that they have my best interests at heart. 

    I can't say thank everyone here on the boards enough for the warm reception, response and encouragement. To have a sounding board such as this is quite a blessing and I'm glad I found you! 

    In many instances, an internet forum is just a fantasy. On dating sites, news forums and the like, you're no more than a thumbnail and words on a screen. It's not "real". In this instance however, there is a bond unlike any other in an internet setting. We're all warriors, not unlike the brother and sisterhood of the military in the battle we're fighting.

    Here's to VICTORY!  HOOAH!

    "T"

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    fishmanpa said:

    Decisions, decisions!

    This evening at 5:30pm I got a call from the Head of Oncology at Winchester Medical. He told me they had finished the initial planning and it looked good for me to start Wednesday of next week. All they had to do was get the OK from the Radiation Oncologist. 

    I asked if they had contacted Chemo Oncology and when my chemo would start. He didn't have an answer and stumbled on the question. He didn't know that I had already called the Radiation Oncologist and the Chemo Oncologist and asked that they put everything on hold while I decide on what path to take in treatment several hours earlier. When I called the Chemo Oncologist's office, I was put through to a nurses voice mail and left a message at around 2pm this afternoon. The call was not returned. 

    After he finished speaking, I informed him on what had taken place as well as my appointment and 2nd opinion at Johns Hopkins. I also, as nurturingly as I could, let him know that his lack of follow up and the fact that it seems as if one hand doesn't seem to know what the other is doing, has severely shaken my confidence in their ability to treat me. My partner has had her doubts as well as she's been with me for every appointment. 

    I have many aspects of my life that have to be arranged and accounted for to make treatment at Johns Hopkins work. My employment situation is one. I'm fortunate that I truly believe I can work something out with my boss to be able to take medical leave for treatment. The law actually protects me and he would be compensated by the government while I'm undergoing treatment. I'm not a man of means by any stretch of the imagination but have family that are stepping up to help a bit. I believe I can eek by financially while getting treatment. 

    I've made the decision to seek my treatment at Johns Hopkins. As the 3rd highest rated cancer center in the nation, I stand the best chance to eradicate "Jack" from my system and retain the best quality of life. I can't tell you how comforting having all those Knights and Knightesses in white all standing around me looking down my throat made me feel ~lol~ Sounds funny but when you hear things like "Go back...down... yes... right there... do you see that on the anterior edge?"... and then three different fingers poking down your throat affirming something they suspect, it instills a bit of confidence these folks know what they're doing.  

    As it stands now, I'll be hearing from the Surgical Oncologist next week to schedule the surgery. Ironically it will fall very close to my 54th birthday. Nice present eh? Then it will be about three weeks of healing before treatment starts. It could range from rads only to a combination of chemo and rads but that will remain to be seen. Regardless, I feel much more confident and safer with the path I've chosen and know that they have my best interests at heart. 

    I can't say thank everyone here on the boards enough for the warm reception, response and encouragement. To have a sounding board such as this is quite a blessing and I'm glad I found you! 

    In many instances, an internet forum is just a fantasy. On dating sites, news forums and the like, you're no more than a thumbnail and words on a screen. It's not "real". In this instance however, there is a bond unlike any other in an internet setting. We're all warriors, not unlike the brother and sisterhood of the military in the battle we're fighting.

    Here's to VICTORY!  HOOAH!

    "T"

     

     

    I'm glad you decided to do

    John Hopkins!!  Confidence in your team is so damned important!!  The fact that they can do this with less invasive treatment with a higher rate of survivability....plus less damage....and less impact on your life just shows us all that the varying quality of treatment out there is plain scary!! 

    Your recovery wil be faster, and so using your FMLA just makes sense.....your employer has to follow the law, but I think too....they WANT you to come back whole.  This little bleep in your life will become history in just a short time, and everybody will get back to normal. 

    So....from me, you get a giant PHEW.....things are going to be ok. 

    p

  • Laralyn
    Laralyn Member Posts: 532
    fishmanpa said:

    Decisions, decisions!

    This evening at 5:30pm I got a call from the Head of Oncology at Winchester Medical. He told me they had finished the initial planning and it looked good for me to start Wednesday of next week. All they had to do was get the OK from the Radiation Oncologist. 

    I asked if they had contacted Chemo Oncology and when my chemo would start. He didn't have an answer and stumbled on the question. He didn't know that I had already called the Radiation Oncologist and the Chemo Oncologist and asked that they put everything on hold while I decide on what path to take in treatment several hours earlier. When I called the Chemo Oncologist's office, I was put through to a nurses voice mail and left a message at around 2pm this afternoon. The call was not returned. 

    After he finished speaking, I informed him on what had taken place as well as my appointment and 2nd opinion at Johns Hopkins. I also, as nurturingly as I could, let him know that his lack of follow up and the fact that it seems as if one hand doesn't seem to know what the other is doing, has severely shaken my confidence in their ability to treat me. My partner has had her doubts as well as she's been with me for every appointment. 

    I have many aspects of my life that have to be arranged and accounted for to make treatment at Johns Hopkins work. My employment situation is one. I'm fortunate that I truly believe I can work something out with my boss to be able to take medical leave for treatment. The law actually protects me and he would be compensated by the government while I'm undergoing treatment. I'm not a man of means by any stretch of the imagination but have family that are stepping up to help a bit. I believe I can eek by financially while getting treatment. 

    I've made the decision to seek my treatment at Johns Hopkins. As the 3rd highest rated cancer center in the nation, I stand the best chance to eradicate "Jack" from my system and retain the best quality of life. I can't tell you how comforting having all those Knights and Knightesses in white all standing around me looking down my throat made me feel ~lol~ Sounds funny but when you hear things like "Go back...down... yes... right there... do you see that on the anterior edge?"... and then three different fingers poking down your throat affirming something they suspect, it instills a bit of confidence these folks know what they're doing.  

    As it stands now, I'll be hearing from the Surgical Oncologist next week to schedule the surgery. Ironically it will fall very close to my 54th birthday. Nice present eh? Then it will be about three weeks of healing before treatment starts. It could range from rads only to a combination of chemo and rads but that will remain to be seen. Regardless, I feel much more confident and safer with the path I've chosen and know that they have my best interests at heart. 

    I can't say thank everyone here on the boards enough for the warm reception, response and encouragement. To have a sounding board such as this is quite a blessing and I'm glad I found you! 

    In many instances, an internet forum is just a fantasy. On dating sites, news forums and the like, you're no more than a thumbnail and words on a screen. It's not "real". In this instance however, there is a bond unlike any other in an internet setting. We're all warriors, not unlike the brother and sisterhood of the military in the battle we're fighting.

    Here's to VICTORY!  HOOAH!

    "T"

     

     

    Great news!

    Now you can move ahead, feeling confident and positive! You'll be in good hands, I'm sure. If you end up with any issues over employment leave, etc. you can consult the Cancer Legal Resource Center for help. People undergoing cancer treatments are generally covered under the Americans with Disabilities act at the federal level, and are often also covered at the state level too!

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    I'm glad you decided to do

    John Hopkins!!  Confidence in your team is so damned important!!  The fact that they can do this with less invasive treatment with a higher rate of survivability....plus less damage....and less impact on your life just shows us all that the varying quality of treatment out there is plain scary!! 

    Your recovery wil be faster, and so using your FMLA just makes sense.....your employer has to follow the law, but I think too....they WANT you to come back whole.  This little bleep in your life will become history in just a short time, and everybody will get back to normal. 

    So....from me, you get a giant PHEW.....things are going to be ok. 

    p

    "Invincible" - Pat Benatar

    Phrannie,

    Thank you!  

    One of my favorite artists of the 70's was Pat Benetar. I had it bad for her ~lol~ 

    This song speaks volumes for the battle we face. 

    INVINCIBLE - Pat Benatar

    "This bloody road remains a mystery
    This sudden darkness fills the air
    What are we waiting for?
    Won't anybody help us?
    What are we waiting for?
    We can't afford to be innocent
    Stand up and face the enemy
    It's a do or die situation
    We will be invincible!

    This shattered dream you cannot justify
    We're gonna scream until were satisfied
    What are we running for?
    We've got the right to be angry
    What are we running for?
    When there's no where we can run to anymore

    We can't afford to be innocent
    Stand up and face the enemy
    It's a do or die situation
    We will be invincible
    And with the power of conviction
    There is no sacrifice
    It's a do or die situation
    We will be invincible!

    Won't anybody help us?
    What are we running for?
    When there's no where, no where we can run to anymore

    We can't afford to be innocent
    Stand up and face the enemy
    It's a do or die situation
    We will be invincible
    And with the power of conviction
    There is no sacrifice
    It's a do or die situation
    We will be invincible!"

    Sing it loud and sing it proud!

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Laralyn said:

    Great news!

    Now you can move ahead, feeling confident and positive! You'll be in good hands, I'm sure. If you end up with any issues over employment leave, etc. you can consult the Cancer Legal Resource Center for help. People undergoing cancer treatments are generally covered under the Americans with Disabilities act at the federal level, and are often also covered at the state level too!

    :)

    Thanks Laralyn,

    The more I learn, the more I feel there's a light at the end of the tunnel. 

    "T"