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ColleenRae

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  1. Like
    ColleenRae reacted to Tom Galli in UPDATED 4/13/20: COVID-19 Information   
    CollenRae,
    Two points: the medical oncology discipline I’m familiar with are all titled Hematologist and Oncologist. Second, I understand the complexity of your dynamic with your son, court case, and the rest. COVID for sure adds extra drama. 
    Only you can determine your priorities and path. My thoughts are only suggestive. 
    Stay the course. 
    Tom
  2. Like
    ColleenRae got a reaction from LUNGevityKristin in UPDATED 4/13/20: COVID-19 Information   
    Can't thank all of you enough for your responses, thoughts and shared experiences... This has all been incredibly helpful!  I did not get the best sleep last night, but reading all of these messages has really helped me focus and has given me guidance as to how to proceed - or at least what direction I might head in! So thank you, one and all!
    Michelle - Thank you for spelling it out so clearly to me as to how your area would handle this. After reading this, I am surprised my surgeon (or at least his staff) did not take steps in assisting with this. He has never consulted with any other provider, so I really haven't felt like there has been a "team" I can turn to. This helps a lot.
    Tom, Bridget & Kristin... Thanks to each of you re: if I can drive myself after radiation treatments. I'm so glad that I will likely be able to drive myself. Whew! Sharing your experiences helps others, like me, so very much. This is a huge relief; you have no idea!
    That has been a big concern, not having anyone to lean on (okay, now I've got Bill Withers's song in my head...) I have tried to encourage my son to drive but realize he knows better than anyone if he is able to handle that responsibility. It's probably better for all of us that he isn't on the road!  I really need to make some friends I can turn to... We had just moved here to our town - we knew no-one in this area - and four months later I had my first lung CT and was told I likely had cancer. I was very reluctant to make friends at the time, fearing how people would react if they knew I had cancer. It just didn't seem like an ideal time to forge any friendships; I didn't want to appear needy to anyone! So I have been very grateful for all of you here.
    Kristin... I hope your mother is doing well. She must be very proud of you! Please tell her that we find your assistance invaluable!
    Again, thanks to all of you for your explanations, suggestions and for educating me. I am amazed at how much you have all learned and coped with throughout this journey. It might sound a bit hokey, but you really are my inspiration and my heroes.
  3. Like
    ColleenRae got a reaction from BridgetO in UPDATED 4/13/20: COVID-19 Information   
    Can't thank all of you enough for your responses, thoughts and shared experiences... This has all been incredibly helpful!  I did not get the best sleep last night, but reading all of these messages has really helped me focus and has given me guidance as to how to proceed - or at least what direction I might head in! So thank you, one and all!
    Michelle - Thank you for spelling it out so clearly to me as to how your area would handle this. After reading this, I am surprised my surgeon (or at least his staff) did not take steps in assisting with this. He has never consulted with any other provider, so I really haven't felt like there has been a "team" I can turn to. This helps a lot.
    Tom, Bridget & Kristin... Thanks to each of you re: if I can drive myself after radiation treatments. I'm so glad that I will likely be able to drive myself. Whew! Sharing your experiences helps others, like me, so very much. This is a huge relief; you have no idea!
    That has been a big concern, not having anyone to lean on (okay, now I've got Bill Withers's song in my head...) I have tried to encourage my son to drive but realize he knows better than anyone if he is able to handle that responsibility. It's probably better for all of us that he isn't on the road!  I really need to make some friends I can turn to... We had just moved here to our town - we knew no-one in this area - and four months later I had my first lung CT and was told I likely had cancer. I was very reluctant to make friends at the time, fearing how people would react if they knew I had cancer. It just didn't seem like an ideal time to forge any friendships; I didn't want to appear needy to anyone! So I have been very grateful for all of you here.
    Kristin... I hope your mother is doing well. She must be very proud of you! Please tell her that we find your assistance invaluable!
    Again, thanks to all of you for your explanations, suggestions and for educating me. I am amazed at how much you have all learned and coped with throughout this journey. It might sound a bit hokey, but you really are my inspiration and my heroes.
  4. Like
    ColleenRae got a reaction from Tom Galli in UPDATED 4/13/20: COVID-19 Information   
    Can't thank all of you enough for your responses, thoughts and shared experiences... This has all been incredibly helpful!  I did not get the best sleep last night, but reading all of these messages has really helped me focus and has given me guidance as to how to proceed - or at least what direction I might head in! So thank you, one and all!
    Michelle - Thank you for spelling it out so clearly to me as to how your area would handle this. After reading this, I am surprised my surgeon (or at least his staff) did not take steps in assisting with this. He has never consulted with any other provider, so I really haven't felt like there has been a "team" I can turn to. This helps a lot.
    Tom, Bridget & Kristin... Thanks to each of you re: if I can drive myself after radiation treatments. I'm so glad that I will likely be able to drive myself. Whew! Sharing your experiences helps others, like me, so very much. This is a huge relief; you have no idea!
    That has been a big concern, not having anyone to lean on (okay, now I've got Bill Withers's song in my head...) I have tried to encourage my son to drive but realize he knows better than anyone if he is able to handle that responsibility. It's probably better for all of us that he isn't on the road!  I really need to make some friends I can turn to... We had just moved here to our town - we knew no-one in this area - and four months later I had my first lung CT and was told I likely had cancer. I was very reluctant to make friends at the time, fearing how people would react if they knew I had cancer. It just didn't seem like an ideal time to forge any friendships; I didn't want to appear needy to anyone! So I have been very grateful for all of you here.
    Kristin... I hope your mother is doing well. She must be very proud of you! Please tell her that we find your assistance invaluable!
    Again, thanks to all of you for your explanations, suggestions and for educating me. I am amazed at how much you have all learned and coped with throughout this journey. It might sound a bit hokey, but you really are my inspiration and my heroes.
  5. Like
    ColleenRae reacted to Rower Michelle in UPDATED 4/13/20: COVID-19 Information   
    Hi Colleen,
    You’re life is upside down right now, one issue at a time. I don’t see how you wouldn’t feel depressed with such a full plate.   
     
     Tom was correct in the clarification, the oncologist serves as the team captain after surgery.  I’m very surprised the surgeon didn’t refer you to one.  That’s where I would start. 
     
    As for the radiation and the drive, here’s how that would be handled here in KS within the rural community, the KU doc designs a treatment plan (chemo, immunotherapy or radiation) that is administered by a local doctor.  The KU doc makes all the arrangements to find a local doc.  It’s like a hub and spoke type model.  KU is the main cancer center in the tri-state area and they work with non KU doctors in the community. 
    If the surgeon is not very helpful the Seattle Cancer Center will have a nurse navigator, their job is to help get you to the right oncologist. 
     
    In my case I was initially diagnosed at a very reputable hospital however the pulmonologist had a hunch that my lung cancer was rare since I was 51 and a never smoker.  He understood that I needed something more than their health system could offer but didn’t have any idea who to refer me to.  He contacted the KU nurse navigator and got me referred bingo to the right doctor.  I didn’t have to do any of the phone work at all.  
     
    It should be the surgeon who does the heavy lifting here to find the medical oncologist.   You can always call the GO2FOUNDATION for a recommendation as well.  They’re based in San Fran and very well versed in the west coast health care operations. 
     
    Brighter days are coming.  A big hug to you!
    Michelle
     
     
  6. Like
    ColleenRae reacted to LUNGevityKristin in UPDATED 4/13/20: COVID-19 Information   
    Hi Colleen,
    First, you can try the Lung Cancer HELPLine for local resources: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline
    My mom had radiation for breast cancer last summer and drove herself to all of the appointments for a little over a month.  Her fatigue hit after her treatments were finished.  Hope this helps!
  7. Like
    ColleenRae reacted to Tom Galli in UPDATED 4/13/20: COVID-19 Information   
    Colleen,
    I didn’t answer your question on driving post radiation. I had both fractional conventional radiation and precision SBRT. I was fullly capable of driving after SBRT. It was only 3 days in a row, and 15 minutes per session. 
    The conventional fractional radiation was an entirely different experience. I had 30 M-F sessions over the course of 6 weeks. The first three weeks, driving alone was no problem. The last three was a nightmare and I could hardly walk from the car to the clinic. 
    Stay the course. 
    Tom
  8. Like
    ColleenRae reacted to BridgetO in UPDATED 4/13/20: COVID-19 Information   
    Hi Colleen, Here's a semi-relevant answer to one of your questions. I didn't have radiation for my lung cancer, but I did have it for two other unrelated primary cancers, each time for about 30 sessions (can't remember exactly). One was for breast cancer. The other was for a gynecological cancer and for that one my entire pelvic and abdominal area was radiated. For both courses of radiation I drove myself to and from treatment. 
    All the best, from Bridget O
  9. Sad
    ColleenRae got a reaction from Deb W in UPDATED 4/13/20: COVID-19 Information   
    Thanks Kristin... There is a cancer center here in my town, but I'm a little reluctant to seek treatment here. I may not have a choice though.
    I had my 2018 surgery in Seattle (about 2 hrs away) and my surgeon has been following me post-op. He is the director of the lung cancer program at the center / hospital where I had my lobectomy; I feel confident in his experience. He was the first to review my most recent scan and his advice was to wait 12 months to see what the next scan shows. He discussed radiation as the next step - if that's what he feels the scan indicates.
    The pulmonology clinic in my town then looked at the scan and had one of their doctors call to discuss it with me. He was encouraging me to get a biopsy NOW - this was not something my surgeon talked about at all. I plan on sending a message to my surgeon's office re: this. I've been reluctant to do so simply because I know he and his clinic / the hospital have been heavily involved in treating COVID-19 patients.  The pulmonology clinic, in my experience, has often pushed for procedures that my surgeon has not agreed with. i.e. They pushed for me to have a  biopsy before my lobectomy, which was not advised by my surgeon as the tumor was in a difficult place to reach - he felt a biopsy wasn't necessary and would be just as dangerous as surgery itself - and the outcome (whether positive or negative) would not have affected the decision to go forward with the lobectomy anyway. (How's that for a run on sentence?!)
    In any case... I am a bit chicken right now to do anything. Some of it is denial in not wanting to acknowlede another tumor. Some of it is just plain ol' fear of COVID-19. If this is a slow growing, small tumor, I think I'd rather take my chances and wait /ride this COVID virus out a bit more before considering a biopsy. Twelve months seems quite long - and I am concerned that this virus will re-emerge next winter, when I'd be nearing the 12 month mark to get another CT with my surgeon, and cause problems once again.
    I also need to do some research and make sure our local clinic has the equipment and skill in providing the radiation treatment I may require. I don't know what the repuation is for the radiologists here. The hospital, unfortunately, does not have the best rep.  Thank you, Kristin.
  10. Sad
    ColleenRae got a reaction from Deb W in UPDATED 4/13/20: COVID-19 Information   
    Thank you Kristin. This was detailed and thorough - although not very uplifting! I'm almost 62. I had a lobectomy, no chemo or radiation about 17 months ago. I have another suspicious nodule LUL that is being watched at my post-surgical CT's. Suspected slow-growing adenocarcinoma per the radiologist (surgeon's not so sure). Mild to moderate emphysema (at least that's what my pulmonary function test said after surgery - my oncologist and pulmonologist have never discussed this with me - I just read it in my test results)... So... I am concerned as I am in 3 of the categories listed as being high risk. To top matters off: I live just north of Seattle. The first COVID-19 case was in the next county; Seattle / King County is just below that. So a little too close for comfort and very likely that this is spreading in our county. It has been heartbreaking to see the impact this virus has had on the nursing home where so many of the patients became infected and have passed. 
    I haven't gone anywhere in the car and only on walks in the past 9 days. Had to get groceries today - all out of healthy fresh food - so ordered online and drove to the store to pick up in the parking lot, so at least I did not have to go in the store. Much of what we ordered was not available; sold out of the store. But even getting the groceries in the parking lot made me nervous!
    My son decided on 02/27 that he was not going back to his college classes as he is concerned - not about his own risk, but that he'll bring the virus home to me (he still lives at home with me). So he's contacted his professors and they are allowing him to work at home, but one wants him to come back to the school for the quarter final exam. He's hoping they'll close the college down like they are elsewhere so he won't have to make that decision. He is trying to register for online classes only for spring quarter, but he's close to graduating and can't find what he needs. So, this is disrupting his life, too, but I am grateful to him for his concern.
    My oncologist is in Seattle. I am scheduled to go there for a follow-up CT the first week of April and see my Dr. right after. It helps to get the results right away like that. I was going to drive down to Seattle and stay the night, but I cancelled those plans. I've decided to stay local and get my CT in my own city. My CT is scheduled for this Friday (the 13th...ugh!). I can't see the pulmonologist to discuss the results until the end of April though, so it will be a long long wait. I don't think my oncologist / surgeon will be pleased, but I just don't want to drive down to Seattle in a few weeks the way things are going. I haven't had a CT since last August (my surgeon asked me to "trust him" and wait approximately 8 mos for my next CT saying the nodule of concern is very small...). I debated whether waiting longer for the CT - maybe changing the Seattle appointment for a later date - but who knows what the situation will be like then? I just want to know what the CT shows. My fear is that this nodule has now grown and we'll be in the midst of this virus pandemic and I won't be able (or comfortable with) doing anything if this is another cancerous tumor. Of course I'm hoping it isn't another cancerous tumor, but if it is... the best I can do right now I suppose is to hope that it is still growing small and that it can wait until, hopefully, this virus subsides.
    I honestly can't decide anymore if I am more afraid of cancer or the virus.  I've even had dark thoughts of "Well, if the CT shows cancer has spread or the tumor is now clearly cancer and grown, maybe getting this virus would be a blessing".  Yeah - what a horrible way to think.  I'm even nervous about going for the CT this Friday and getting exposed by someone there who had the virus. It seems like there is no easy or winning solution here.
    I just keep hoping / wondering that if I really keep myself isolated for as long as possible, maybe - just maybe - I'll be able to avoid this virus. At the same time, I wish there was something I could do for others in this situation (former public health employee), but I realize that's not going to happen. I'm definitely not ready to say goodbye to my son or to leave him alone to deal with this. I don't want this to happen to anyone. Just having a hard time with this.
  11. Like
    ColleenRae got a reaction from Tom Galli in UPDATED 4/13/20: COVID-19 Information   
    Michelle,
    Thank you very much!  Your "Letterman Ten" is an incredibly helpful perspective!  Gosh, I just love you! You always have such beneficial, educated information to offer with a side of humor!
    I have long suspected that the "local yokel centers" are revenue driven.  I know they were greatly disappointed when I chose to have my surgery in Seattle vs here with the one thoracic surgeon (past retirement age) available. It was a little disheartening when it finally dawned on me that while they likely cared about me as a patient, they were also trying very hard to sell me getting my treatment locally. I can understand this, but it doesn't mean I have to agree with it. It must be very difficult for medical clinics and hospitals to compete for patients when facilities such as the Univ of WA Medical Center, Fred Hutch and Seattle Cancer Care Alliance are within a 2 hour drive.
    RE: asking my surgeon to refer me to a thoracic oncologist... My understanding is that he IS a thoracic oncologist. I was very confused about this following my surgery (I kept asking here on this site where I was supposed to get / find an oncologist).  He is quite well known for treating mesothelioma on the West Coast. I just checked his business card and it lists "Surgical Director Lung Cancer Program Thoracic Surgery Oncology".  When we spoke in March to review the cat scan, he said it had grown but it was still too small for him to even find if he tried to. He discussed that stereo-tactic radiation would likely be the route to go and mentioned something about he would place markers for the radiologist (Tom Galli gave me some info re: this; thank you again Tom!).  My surgeon said he would consult with one of his radiologists in the future regarding this.
    But... in any case... your message and list of ten items was very helpful. I need to write up my own list, but I think your #9 made me take pause:  It may very well be better to seek treatment now in case of a surge. I don't think COVID-19 will be going away soon any time either. I tend to be a bit of a germ-a-phobe as well, but this experience has heightened that trait. Until there is a vaccine - and even when there is one - I think I will always feel concern.
    On another note:  "I know two other ALK Positive patients who also had the virus with mild symptoms (for real!)"... THAT was really uplifting news! Very happy for them and so encouraging for the rest of us.  I will really be interested in getting an antibody test if possible in the future to see the results. I know they don't know at this point how much immunity one might have if anti-bodies are present, but it would be good to know if one had been exposed and had minor to no symptoms!
    Thanks for your response.
     
  12. Sad
    ColleenRae got a reaction from Tom Galli in UPDATED 4/13/20: COVID-19 Information   
    Thanks Kristin... There is a cancer center here in my town, but I'm a little reluctant to seek treatment here. I may not have a choice though.
    I had my 2018 surgery in Seattle (about 2 hrs away) and my surgeon has been following me post-op. He is the director of the lung cancer program at the center / hospital where I had my lobectomy; I feel confident in his experience. He was the first to review my most recent scan and his advice was to wait 12 months to see what the next scan shows. He discussed radiation as the next step - if that's what he feels the scan indicates.
    The pulmonology clinic in my town then looked at the scan and had one of their doctors call to discuss it with me. He was encouraging me to get a biopsy NOW - this was not something my surgeon talked about at all. I plan on sending a message to my surgeon's office re: this. I've been reluctant to do so simply because I know he and his clinic / the hospital have been heavily involved in treating COVID-19 patients.  The pulmonology clinic, in my experience, has often pushed for procedures that my surgeon has not agreed with. i.e. They pushed for me to have a  biopsy before my lobectomy, which was not advised by my surgeon as the tumor was in a difficult place to reach - he felt a biopsy wasn't necessary and would be just as dangerous as surgery itself - and the outcome (whether positive or negative) would not have affected the decision to go forward with the lobectomy anyway. (How's that for a run on sentence?!)
    In any case... I am a bit chicken right now to do anything. Some of it is denial in not wanting to acknowlede another tumor. Some of it is just plain ol' fear of COVID-19. If this is a slow growing, small tumor, I think I'd rather take my chances and wait /ride this COVID virus out a bit more before considering a biopsy. Twelve months seems quite long - and I am concerned that this virus will re-emerge next winter, when I'd be nearing the 12 month mark to get another CT with my surgeon, and cause problems once again.
    I also need to do some research and make sure our local clinic has the equipment and skill in providing the radiation treatment I may require. I don't know what the repuation is for the radiologists here. The hospital, unfortunately, does not have the best rep.  Thank you, Kristin.
  13. Like
    ColleenRae got a reaction from Rower Michelle in UPDATED 4/13/20: COVID-19 Information   
    Michelle,
    Thank you very much!  Your "Letterman Ten" is an incredibly helpful perspective!  Gosh, I just love you! You always have such beneficial, educated information to offer with a side of humor!
    I have long suspected that the "local yokel centers" are revenue driven.  I know they were greatly disappointed when I chose to have my surgery in Seattle vs here with the one thoracic surgeon (past retirement age) available. It was a little disheartening when it finally dawned on me that while they likely cared about me as a patient, they were also trying very hard to sell me getting my treatment locally. I can understand this, but it doesn't mean I have to agree with it. It must be very difficult for medical clinics and hospitals to compete for patients when facilities such as the Univ of WA Medical Center, Fred Hutch and Seattle Cancer Care Alliance are within a 2 hour drive.
    RE: asking my surgeon to refer me to a thoracic oncologist... My understanding is that he IS a thoracic oncologist. I was very confused about this following my surgery (I kept asking here on this site where I was supposed to get / find an oncologist).  He is quite well known for treating mesothelioma on the West Coast. I just checked his business card and it lists "Surgical Director Lung Cancer Program Thoracic Surgery Oncology".  When we spoke in March to review the cat scan, he said it had grown but it was still too small for him to even find if he tried to. He discussed that stereo-tactic radiation would likely be the route to go and mentioned something about he would place markers for the radiologist (Tom Galli gave me some info re: this; thank you again Tom!).  My surgeon said he would consult with one of his radiologists in the future regarding this.
    But... in any case... your message and list of ten items was very helpful. I need to write up my own list, but I think your #9 made me take pause:  It may very well be better to seek treatment now in case of a surge. I don't think COVID-19 will be going away soon any time either. I tend to be a bit of a germ-a-phobe as well, but this experience has heightened that trait. Until there is a vaccine - and even when there is one - I think I will always feel concern.
    On another note:  "I know two other ALK Positive patients who also had the virus with mild symptoms (for real!)"... THAT was really uplifting news! Very happy for them and so encouraging for the rest of us.  I will really be interested in getting an antibody test if possible in the future to see the results. I know they don't know at this point how much immunity one might have if anti-bodies are present, but it would be good to know if one had been exposed and had minor to no symptoms!
    Thanks for your response.
     
  14. Like
    ColleenRae reacted to Rower Michelle in UPDATED 4/13/20: COVID-19 Information   
    Hi Colleen
    My heart broke reading this post.  I think we’re all in a similar position when making choices COVID vs Cancer.  We shouldn’t have to be in this position.  Listen to your instinct.  The local yocal centers are in my experience, revenue driven with an inability to recruit the best specialists (which are typically found in the major academic research centers). 
     
    My scans are due at the end of the month and I went through a brief decision making process before confirming my scan:
    1. The COVID virus has been lingering around KC since early December (based on some of the new antibody tests)
    2. I didn’t contract the COVID during this time because I was always a germ-a-phobe, even more with this cancer.  
     
    3. The hospital is taking huge precautions by having strict isolation protocols.
    4. There are five people in my church that have the COVID, two of them high risk, none of them were hospitalized.
    5. I know two other ALK Positive patients who also had the virus with mild symptoms (for real!)
    6. I have my own protective garb (N95) and medical grade gloves from my chemo days  
    7. Cancer worries me more than COVID.  My immune system is in good shape according to the lab values   
    8. I don’t think COVID is going away soon. 
    9. Better to seek treatment now in case there is another surge and things get worse  
    10.  I believe the COVID odds are in my favor, there are things I am doing to be as proactive as possible, cancer is a bigger problem for me at Stage IV. I would just kick myself for putting off a scan if there were any clinical changes that were not detected early.
    That’s my Letterman Ten.   Maybe it’s helpful perspective.  
     
    Have you considered asking the surgeon to refer you to a thoracic oncologist?  The thoracic oncologist is an expert in lung cancer who may have a different perspective.  I’m wondering if there could be a virtual appointment so you don’t have to make the two hour trip?  Worth a shot?  
     
    @BridgetO gave some very practical advice in another post. You make the best decision you have with the information you got and don’t look back. 

    Keep us posted.  I will pray for you! 
    Michelle
     
     
  15. Like
    ColleenRae reacted to BridgetO in Just diagnosed and very sad   
    Hi Julie and welcome,
    I had a lower right lobectomy in November 2016. by VATS.  Any surgery is serious, but this one was fairly easy as surgeries go.  In 2011, I had a really big surgery for an unrelated cancer. For that one I was groggy for days due to morphine. After the lobectomy, I woke up chipper and chatty! I know I was intubated for anesthesia for both surgeries, but the tube was gone by the time I woke up.  After the lobectomy, I was walking around in the hospital corridors later the same day. I was discharged the following day with a chest tube still in place because I had an air leak.  
    Here's a suggestion: get a foam wedge pillow to sleep on to keep your upper body elevated. I tried to find a good position with an array of other pillows but only ended up with a sore neck. The wedge pillow (12 inches high) really helped me breathe easier and be more comfortable. 
    The suggestion for a visiting nurse is a good one. One thing I needed help with was changing dressings. especially at the site of my chest tube. I
    My surgery was VATS, video assisted with tiny incisions.  You say you're having thoracotomy, so I assume this is an open surgery. If so, you will likely have more pain and a longer recovery than I had.  Maybe some who have had open surgery can chime in here.
    Let us know what questions you have and how we can support you.
    Bridget O
  16. Like
    ColleenRae reacted to Tom Galli in Just diagnosed and very sad   
    Julie,
    Any lung cancer diagnosis is frightening. Layer on a pandemic that prohibits family support and one starts to feel lonely and afraid. 
    So, lets break this thing down. First intubation: I’ve had a total of 8 thoracic procedures that required anesthesia by intubation. Not once was I aware of the tube. Your anesthesiologists will talk to you before surgery. Tell him or her about your fear; I bet they have some good stuff on hand so you won’t care a lick about intubation.
    Waking up or should I say becoming aware of being awake is weird. I was thirsty every time. Water came quickly but in small sips. Once water was denied and ice chips were available to ease my dry mouth. Pain? I didn’t have any. Three of my procedures were complicated surgeries and I had a morphine plunger wired up. My doc and nurse told me to press the button at the slightest hint of pain. I was also told to hit the button when they had to move me or remove a tube. My surgeon told me the last thing he wanted me to experience was pain. The on-call morphine didn’t stay long but I could request a battery of pain meds. Discuss these with your surgeon before you are admitted. 
    Morphine is powerful stuff and I worried about addiction. I figured out there is a certain amount of “placebo” effect with the button. Yes it works and relief is instantaneous but they’ve got it on a timer such that you only get the medicine according to the interval set by the surgeon. But they told me to push the button anyway. 
    Recovery from thoracic surgery is a process. My nurses were harder on me than any drill sergeant. I was “encouraged” to get out of bed, even though I was connected to a host of tubes. Then there were ward laps. “Come on, you can do one more...” Then you’ll meet your respiratory therapist and be introduced to the spirometer. Your nurse and respiratory therapist will tag team you into blowing into a tube and lifting a ball to a certain level.  This seems counterintuitive but getting your lungs exercised is extremely important!
    Nevertheless, surgery is frightening and without the comfort of family it will a higher hill to climb. I bet you climb it in record time and soon we are reading about your discharge. And we are with you every step of the way!
    OBTW questions? Don’t hesitate to ask. I bet we’ve got more lung cancer experts on this forum who designed the t-shirt everyone else wears. 
    Stay the course Julie!
    Tom
  17. Like
    ColleenRae got a reaction from Tom Galli in Just diagnosed and very sad   
    Hi Julie. I am sorry for your diagnosis but hope that this is "good" news in the long run... I am assuming it is, as you are able to have surgery. You have come to the right place for support! I am sorry your kids can't be with you right now. Your fear and wishing they could be with you (and I am sure they wish they could be as well), is completely understandable.
    I had my right upper lobe removed via VATS surgery in October 2018. I was terrified prior to surgery. I will be honest, I don't remember waking up with a tube at all. I was so doped up following the surgery I don't remember much.  What I do remember is my throat feeling a bit sore - nothing terrible, just a little sore and scratchy - but I had no trouble eating following the surgery. I had a mediastinoscopy as well (small incision near thyroid) and had no problems eating or swallowing. I DO remember having oxygen following the surgery and I became quite tired of that / those little plastic tubes in my nostrils. I was able to shower by myself, go to the bathroom, etc. I was very worried about all of the unknowns prior to the surgery. In hindsight, it was definitely not as bad as I had feared. It is still major surgery, and you will need time to heal, but you can do this.
    I would guess that, yes, it would be "normal" for someone to initially fight it if they wake up from surgery. That sounds like a normal, protective measure we would take. Maybe others can offer more info re: their experience but I can assure you that I do not recall waking up being intubated or even aware of it. The drugs knocked me out quite hard! I was pretty dopey for about 24 hours. I was more aware of the chest tube being removed than anything else. Try not to think too much about things like this and worry yourself.  Try to have your home in order so that when you do come back home you can rest as much as you can. Having some food in the freeze that you can hopefully microwave will help. Also, if you are alone I know it is hard to get things for yourself when you can't drive... and this virus is not helping with that either. If you can get them, I would recommend getting some "Icey Hot" patches. I found them very helpful to help with pain (I quit pain med's quickly due to an allergic reaction and stuck with Tylenol only - it was perfectly sufficient for the pain). I used the patches before I went for walks. Walk as much as you can and use the sprirometer that the hospital will give to you... The discomfort and pain will pass quicker than you realize.
    We can all understand you being terrified.  I was afraid I would need to go to a nursing home following surgery as I only had my adult disabled son to help me (Autism). My surgeon felt I would be fine at home. It helped to have my son with me, but I probably could have managed on my own. If you have someone who can check in on you safely, that would help.  COVID-19 is not making things easier, that's for sure. 
    Again, very sorry you have to deal with this but glad you came here. Please ask questions - this site helped me enormously and still does.  Wishing you all the best next week...
    Colleen
  18. Like
    ColleenRae got a reaction from Tom Galli in Just diagnosed and very sad   
    Kathleen ~ As you can see, we all understand your grief right now... But as you can also see, there is a lot of hope!
    I learned I had suspicious nodules in December 2016, just a few days before Christmas. I was devastated. I was told it would be a "watch 'n wait" scenario as the nodules were too small to do anything with. I was not comfortable with that but I was grateful for the time to prepare myself.  I spent a lot of time trying to educate myself and research as much as I could about lung cancer. In hindsight, I paid far too much attention to the numerous studies on prognosis and survival statistics. I was certain my life was over...
    I ended up having surgery in Oct 2018 and was diagnosed with NSCLC.  This site helped so much in helping me prepare for the vats surgery/lobectomy. I felt I received a lot of encouragement every step of the way and this gave me a sense of community... not a "club" any of us would ever willingly join; but we are here for one another.
    I hope your oncology appointment tomorrow will give you the definitive answers you need right now to move forward. Do not give up or think you won't be able to engage in those retirement dreams of yours.
    Colleen
  19. Like
    ColleenRae reacted to Lin wilki in Update on scan   
    Yes. Covid negative!  Now can start my HER2 targeted chemo. I think it’s about time something works for me!
  20. Like
    ColleenRae reacted to Lin wilki in Update on scan   
    So good news first. Kadcyla approved. Supposed to have infusion next Wednesday 
    Now the bad news. After my onc took scans to tumor board they decided there are things in my lungs that shouldn’t be there -  maybe infection?  She wants me to get a Covid test and echo before I can get treatment. Wow!  Such a roller coaster!
    Will follow up
  21. Like
    ColleenRae got a reaction from Tom Galli in Covid-19 times   
    So glad to see all of these posts... It helps me, too, Roz, to know how others are doing. I'm just glad to "hear" all of your voices... but I feel such concern as well.
    I'm here in WA state "home of the first reported COVID-19 case"... Wow. What a claim to fame!  Our numbers are going down - they are much lower than what I think we all anticipated they could be. Social distancing is paying off, but I greatly fear lifting the restrictions.  The painful and tremendous impact of COVID-19 continues to snowball. The economic impact is frightening, but I know I am just as concerned about re-opening businesses.
    For me - looking towards the future - it is hard to maintain a positive outlook. I don't want to have to remain isolated until an effective vaccine is available. I want to take care of this slow growing tumor now in my other lung. I want to be able to assure my son that he will be able to complete college - but he lives with me and we are both concerned about him returning to college next Fall (if it re-opens) in case the virus has not gone away or if it re-emerges. I'm just having a hard time envisioning / hoping and dreaming plans for the future right now.  My son is on the Autism spectrum and was making great strides attending live college classes. I'm seeing him revert back to old patterns of behavior. He said COVID-19 is perfect for him as an introvert - he loves being home and has not left the house since Feb. 27th, with the exception of some walks in our area. Not good!
    Most of all... I really wish I had a garden to spend time in and grow my own food... That would eliminate a lot of stress!
    Tom - I am sorry to hear about your pain but glad you were able to utilize tele-medicine. Neck pain is really difficult to experience. I hope the meds are helping and the side effects can be controlled.
    Michelle - You and your family certainly have a full plate... You must have an awesome hubby. I hated reading he took the UPS job to obtain health insurance...   I ran an online business that has completely gone under since March. I haven't even tried to file for any assistance; we are doing okay for the time being, but I am going to lose my state health insurance now as it is based upon my work earnings, so that has me greatly concerned. If nothing else, I really believe this pandemic has highlighted the enormous need for universal health care in our country. It's way past time! My apologies if this upsets anyone - I am probably making a mistake by bringing politics into the conversation.
    Sending positive thoughts for all of you... hoping clinical trials and treatments can continue and resume asap. Just stay safe and know you are not alone!
     
  22. Like
    ColleenRae got a reaction from LUNGevityKristin in UPDATED 4/13/20: COVID-19 Information   
    Thank you, Kristin.
    I read the transcript (vs view the video) and this was helpful. As one of those patients with another small, slow-growing GG tumor, I was told radiation is likely in my future but I need to wait 12 months (per my surgical oncologist) due to COVID-19. My Dr. realized that might be a difficult thing to accept, but I have put my trust in him. I am grateful I am able to do this safely (hopefully... time will tell). I can only imagine the stress that others might be experiencing right now who are actively undergoing treatment. Dr. Donington sounds like a very caring provider. Her statements were clear and understandable. It was helpful to hear her perspective and realize that this is hard for our cancer providers as well - they want to be able to care for us in the most expedient and helpful ways possible. COVID-19 has presented them with challenges in delivering that care to us - and they are doing what they can to protect us not only from cancer but this new virus as well.
    You / Lungevity have been absolutely stellar in providing us with information. Thank you. Really reminds me I am not alone in this or my fears!
  23. Like
    ColleenRae got a reaction from Roz in Covid-19 times   
    Hi Lin wilki... Good for you working part-time at the Y in your pre-COVID life! I thought I'd like to work or volunteer at our local Y before all of this. I attended their Livestrong program last summer, but I have to admit, I was always a little squeamish about germs / gyms....  Even if I could do so now, I think I'd be too nervous after COVID-19 to go back to the gym, so I admire your optimism but applaud your caution!
    Good luck to you as well!
    Yes - Michelle - let us know about your husband and please thank him for signing up for the trial!  I'm just sure he's a great guy. I think of you every time I see an adult trike on the trail. Most of them have little banner flags and I keep thinking of your large, colorful one
     
  24. Like
    ColleenRae got a reaction from Roz in Covid-19 times   
    So glad to see all of these posts... It helps me, too, Roz, to know how others are doing. I'm just glad to "hear" all of your voices... but I feel such concern as well.
    I'm here in WA state "home of the first reported COVID-19 case"... Wow. What a claim to fame!  Our numbers are going down - they are much lower than what I think we all anticipated they could be. Social distancing is paying off, but I greatly fear lifting the restrictions.  The painful and tremendous impact of COVID-19 continues to snowball. The economic impact is frightening, but I know I am just as concerned about re-opening businesses.
    For me - looking towards the future - it is hard to maintain a positive outlook. I don't want to have to remain isolated until an effective vaccine is available. I want to take care of this slow growing tumor now in my other lung. I want to be able to assure my son that he will be able to complete college - but he lives with me and we are both concerned about him returning to college next Fall (if it re-opens) in case the virus has not gone away or if it re-emerges. I'm just having a hard time envisioning / hoping and dreaming plans for the future right now.  My son is on the Autism spectrum and was making great strides attending live college classes. I'm seeing him revert back to old patterns of behavior. He said COVID-19 is perfect for him as an introvert - he loves being home and has not left the house since Feb. 27th, with the exception of some walks in our area. Not good!
    Most of all... I really wish I had a garden to spend time in and grow my own food... That would eliminate a lot of stress!
    Tom - I am sorry to hear about your pain but glad you were able to utilize tele-medicine. Neck pain is really difficult to experience. I hope the meds are helping and the side effects can be controlled.
    Michelle - You and your family certainly have a full plate... You must have an awesome hubby. I hated reading he took the UPS job to obtain health insurance...   I ran an online business that has completely gone under since March. I haven't even tried to file for any assistance; we are doing okay for the time being, but I am going to lose my state health insurance now as it is based upon my work earnings, so that has me greatly concerned. If nothing else, I really believe this pandemic has highlighted the enormous need for universal health care in our country. It's way past time! My apologies if this upsets anyone - I am probably making a mistake by bringing politics into the conversation.
    Sending positive thoughts for all of you... hoping clinical trials and treatments can continue and resume asap. Just stay safe and know you are not alone!
     
  25. Haha
    ColleenRae got a reaction from Rower Michelle in Covid-19 times   
    Hi Lin wilki... Good for you working part-time at the Y in your pre-COVID life! I thought I'd like to work or volunteer at our local Y before all of this. I attended their Livestrong program last summer, but I have to admit, I was always a little squeamish about germs / gyms....  Even if I could do so now, I think I'd be too nervous after COVID-19 to go back to the gym, so I admire your optimism but applaud your caution!
    Good luck to you as well!
    Yes - Michelle - let us know about your husband and please thank him for signing up for the trial!  I'm just sure he's a great guy. I think of you every time I see an adult trike on the trail. Most of them have little banner flags and I keep thinking of your large, colorful one
     
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