Betsy update 4.10.14
It has been a week now since Betsy Hansen was able to leave the hospital. After a long stay at HMC, she was ready to come home and heal. In order for this to happen, she still needed IV nutrition and decompression through her newly installed PEG tube. So, she was placed on hospice care, which took me about 3 days to get over the word. Hospice usually means that only comfort measures will be used until the passing of an individual. When Betsy got home the first night, Melody Dayton came over and stayed with us to help in the transition. We had a few scares early on but everything seems to be improving so far. The hospice thing seems like a little much right now since she does not feel like she is on her death bed yet. She is eating meals and processing regularly so the plan is to get her strong enough again to explore some treatments that could help in her comfort and quality of life. It hurts so much for me to say that she is pretty much terminal at this point and she wants to do whatever she can to stay with us for as long as she can. We are hoping to get at least another 6 months if she can do it. Nobody can really say how much time she has because of the way she has shown us all that she can live through the toughest times that would have killed most people.
She is going to go on a couple trips to see her family and enjoy the time she has left on this planet. Of course we all know that Radar will be closing at the end of the month, we will be liquidating all the contents of the shop to try and cover the rent until the landlords can find a new tenant, hopefully they will have someone by then. Once this is done, we will be selling our house and moving into my parent’s basement for the remainder of her life. There will also be a huge estate sale in our home, and for those of you that know us or have been to our house, we hope it all goes to good homes. I want to avoid estate services if possible. Once this is all done and she is feeling up to it, we will lease a small RV and drive down the west coast. Who knows, new medications and treatments could be available to her by then and by all means she will go for it. Thank you all for all your continued love and support. Johnny & Betsy
Betsy Hansen’s condition is worsening. We have a plan of attack to keep her comfortable and to try to get her back into treatment. Tomorrow she will be starting radiation on the tumor that is growing around her sacrum. She told the doctors she does not have time to wait for her bowels anymore and she wants to get going on this cancer. I have never seen so many doctors in one day, jump around and figure out what the best plan would be for her. She has this ability to make them cry, and turn them into human beings again. This may be the beginning of the end for her but she is not going down without a fight. Her will to live and to get things done amazes me everyday, “whatever it takes” she says , “let’s get on with it”. So, on Wednesday they are going to do a gastrojejunostomy I think is the spelling. A tube that will be replacing the ng tube that is in her nose. She can eat through it, or have gas relief, and hopefully help with the bowels. It will definitely help her get home faster, and that is what she wants. This is not the news we wanted to hear but it is where we are now, our main goal is to keep her pain free and to try to do a little more treatment to squeeze out as much time as possible for her to enjoy the rest of her life happy and comfortable. Thank you all for all your continued support.
Update on Betsy for 3.7.14
The Betsy Hansen saga continues!! So this Thursday Betsy had her kidney checked out by the Urologist and they confirmed the narrowing in the ureter is a problem and could be the result of the pain she has been having for the past month. So next Wednesday they will be putting in a stent, if it is possible. If not, there is another way from her back to have a drain tube to help with the function of her left kidney which is only functioning at 15%.
Until then, she is pretty much home bound until she feels well enough to stand for a couple hours at a time.
The good news is, we have been seeking other trials and a Doctor from Memorial Sloan Kettering Cancer Center in New York replied to Dr. Eddie’s inquiry about Betsy. This is for an anti-pd1 (Google it) trial that also promises good results. This was recommended for her from the folks in DC when they gave us the news that they had nothing for her. So, help us make this a reality. We all have the power of thought. Xoxo Johnny & Betsy.
Sorry for the delay on an update for all the tumblr followers. There has been an issue with the feed. So since the flu, Betsy went in for chemo which resulted in a week hospitalization stay for severe dehydration. She pulled through that with amazing strength as she has before.
We were waiting on a call from Washington DC for a clinical trial based on immunotherapy. On February 17th we flew to DC and met with several Doctors as well as having multiple test run on her . The cancer is growing rapidly in her lungs and there is also signs of it retuning on her liver as well. We found out that her left kidney has suffered some scaring and her ureter tube is narrowing so she needs to have a stent put in before any trials could be considered.
Jumping to today we received a call from NCI and she does not qualify for the most promising studies that they are doing over there. There is one, but they have not seen any promising results with it so far. I don’t think she wants to go through with it though. We have been advised to seek other trials that are going on around the world which is basically our only hope for her survival. At this time we are going to sell Radar Hair & Records and eventually our house and focus on the time we have left together which at this point is unknown. Thank you all for your continued support through all of this. I don’t think she would be with us today if it wasn’t for all of you. Love, Johnny & Betsy
Our trip to Napa was awesome. We had a great time visiting with family and Dad’s birthday was a success! We heard some great stories from the old timers, some even made us cry. Today Betsy was supposed to start chemo again but due to some crazy stomach flu or Norovirus, I was up all night shooting out of both ends, and at about 7 am so was Betsy. I haven’t felt this sick in ages, I thought I was going to die. I have been keeping a close eye on Betsy in between my visits to the bathroom. This is so horrible and scary at the same time. Hopefully it passes and she can get back to her treatment on Thursday. Please send us all you have. We love you all. Betsy and Johnny
Well, this morning I woke up, Betsy was complaining of lower back pain and we were on the fence about going into the emergency room. We got a hold of Dr. Eddie and he thought we should come in and get some more blood drawn and a CT SCAN just to be safe and to have a baseline of what is going on in there now . Her last CEA count has come back and it is up to 29 from 15. This is not a good sign. We are going to Napa to see her father for his 80th birthday this weekend and when we get back she will be going in for chemo on Tuesday to slow the progression down until we get a word back from the National Cancer Institute about doing this clinical trial. Please keep Betsy in your prayers, she really needs it right now. Thank you and we love you all.
Well, we got the call we have been waiting for and it was not what we expected. Her CEA count was at 5.4 and it is now measuring at 15. With a spike of 10 points it is safe to say that the spots on her lungs are indeed cancerous. Eddie is working as fast as he can to get her some options for treatment. In the mean time she might be starting a regimen of chemo to slow the growth process to buy some time until we get word back from the clinical trial to see if she can get into the study. It is the most promising and could potentially save her life. He also sent some of her tumor tissue to a new group at the UW that will be testing for 300 different mutations that could pinpoint the best drug treatments that have not yet been used.This process is new and is only done in a few hospitals, UW being one of the first. There is hope to stop the progression of the cancer but as I said in the last update when it goes to the lungs it is incurable with traditional methods, such as surgery. Betsy is an amazing person and her strength in this whole thing is unbelievable, I have learned so much from her about life and dealing with whatever comes of all of this. We have had an amazing life together and nobody wants this to end. She is going to do everything she can to stay alive for as long as she can, or beat this, and live her life in a fun and normal way , as some of you have seen her out more and more. “It doesn’t help to sit around and worry about what may or may not happen. Let’s enjoy the precious time we have now.” -Betsy Hansen
Thanksgiving dance party. Here is Betsy at 11pm working off today’s meal. Still strong, having the time of her life on the dance floor! She hates when I make these little videos of her. I love you Betsy. Happy Thanksgiving to all our wonderful friends and family. We love you !
So, today was the meeting to get the results back from the CT. The news was not what we expected. Her CEA count was at a normal 5.4 but the images showed about 5 spots on her lungs that were not there before. Also 3 additional spots on her liver which seem to be close to where the old ones were. Once the cancer has moved to the lungs it is considered incurable with traditional methods. Dr. Eddie felt like things did not add up, he will be speaking with radiology again to get a better idea. It is possible this is just inflammation from the surgery and just some scar tissue but we are prepared if it ends up being the cancer.
The options are more chemo to keep everything manageable until the cancer stops responding. Or there is a clinical trial going on in DC for a new treatment called “immunotherapy” which uses the bodies own T sells to attack the cancer and possibly get rid of it completely. There has been a lot of success with this treatment and Eddie thinks Betsy would be a good candidate for this. When she was first hospitalized last year, her body continued to fight the cancer without chemo while she was fighting for her life. She is not giving up. Betsy still has some fight left in her and she is prepared to use it. Thanks for all your prayers and support through all this. We love you all.
Update on Betsy…
It has been two months since her surgery. Today she had her first CT scan post op. Thursday we meet with Eddie and will find out the results. We are hoping for a clean scan, no cancer!! Regardless of the results, she is prepared for whatever comes next. Hopefully she can get on with living her life cancer free. Please keep her in your thoughts for major healing.