Lisa Haines

My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I?
I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor.
On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character.
Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.”
A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome.
What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character!
Stay the course.
Tom

I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?”
 
When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via open thoracotomy (with a 9.7 cm mass). Both surgeries had clear margins and did not have lymph node involvement. Biomarker testing revealed that both masses were basically identical, KRAS G12D. Surgery was followed by chemotherapy in Jan and Feb 2018, “to be sure any microscopic cancerous cells were killed.” I was NED (No Evidence of Disease) until about October 2018. Follow-up CT’s started to show gradually increasing “spots” in both sides of my lungs. Since there is not a targeted treatment for KRAS G12D, I went into a clinical trial in May 2019. This was for a personal cancer vaccine with immunotherapy (Tecentriq). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer in both sides of my lungs so the trial was ended. After reviewing upcoming trial research, it seemed that the best course would be to wait for a trial to activate that included SHP-2 and MEK inhibitors. However, as more and more time crept by, the trial was not available. The Covid pandemic most likely contributed to this. At this time, I contacted a radiation oncologist to see if there might be a potential treatment for me with radiation. The day my radiation mapping was complete for standard radiation, the email about an available slot for the trial appeared and I needed to make a decision. So, in December, 2020, I started the Phase I clinical trial that involved taking oral medications (RMC 4630 and Cobimetinib). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer on both sides. The mass in the lower right lobe was now about 9 cm in size. My oncologist suggested the next line chemotherapy (Taxotere/Taxol and Ramucirumab), but I remained skeptical about my odds of doing well with that approach. 
 
Here is where the story gets more interesting. 
Since my diagnosis I had been connecting with the online Lungevity forums. I found the supportive community helped me tremendously and I was also offering my own experiences to others. In the summer of 2020, I started attending the Friday night Lungevity zooms. Soon, I was participating, as often as possible, on Friday nights. One of my friends in the group, a 17 year lung cancer survivor, Tom Galli, suggested that I contact my radiation oncologist again, and ask about a form of SBRT or what Tom likes to call “precision radiation.” Tom explained to me about the abscopal effect, and somehow I knew that I had to give it a try. What did I have to lose? 
 
The Wikipedia definition states, “The abscopal effect is a hypothesis in the treatment of metastatic cancer whereby shrinkage of untreated tumors occurs concurrently with shrinkage of tumors within the scope of the localized treatment.”
 
I reached out to my radiation oncologist and his initial response was that the abscopal effect rarely works, so what’s the point in doing it? I suggested that since I didn’t have any other viable options, it would be worth trying, because I really believed that the “Roscopal effect” would work. After consulting with my medical oncologist, he called me back and agreed to try 7 sessions of VMAT, (Volumetric modulated arc therapy), aimed at the largest tumor in the lower right lobe, however, he further stated that most likely it would not be successful. From February 18-26, 2021, I underwent 7 VMAT sessions. Then, I had my follow-up CT on March 20th. 
The results were available on the portal on Sunday March 21st. My instincts were correct. The CT showed reduction not only in the area targeted by the treatment (lower right lobe mass), but also in all cancerous areas in my right lung. In addition, the cancerous areas in my left lung also showed reduced size. When my doctors connected with me on Monday, they were amazed and surprised by the results. I was the only one who completely expected the “Roscopal effect” to occur. My radiation oncologist continues to be cautiously optimistic and is eagerly awaiting results of my next CT scan at the end of May to see if there is stability or further reduction. I want everyone out in the lung cancer community to know that it’s definitely worth the shot. Even if my joy in having my first CT that showed reduced size in the cancer might prove to be short-lived, it has been worth every moment. This needs to be studied and hopefully clinical trials will occur to find out which patients would benefit from this form of treatment. I believe that if it wasn’t for my Lungevity connections and Tom Galli specifically, this would not have happened. Everyone needs to be their own advocate and push for the treatment that feels right. I did that and the effect-”Roscopal.”

 

Today I celebrate 17 years surviving lung cancer. COVID is a nightmare. But, I am celebrating nevertheless. Life after lung cancer is precious and most worthy of celebration.
You might note I’ve run out of toes to paint. I do this to honor Phillip Berman, MD, a radiologist with Stage IV lung cancer, who was instrumental in my survival. Phil resolved to paint a toenail red for each year he survived “this madness.” He painted 5 before passing; I continue the tradition using LUNGevity Blue. My reason is: if I can live, so can you.
Stay the course.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
COVID and Me
By Lisa Haines
When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
 
About me:
Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.

MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
Step 1 – Invest in sophisticated diagnosics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
Step 2 – Choose a good general practitioner 
Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
Step 3 – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
Step 4 – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step 5 – Acquire a sanguine attitude quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step 6 – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step 7 – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
Step 8 – Don’t try to tough it out
I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
Step 9 – Become a calendar maniac
If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step 10 – Choose to live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Stay the course.