Back in 2020 when my husband (Ken) found out he had lung cancer, I decided to document what happened medical wise because I thought I might post about it when he came through the other side. But he passed away in November of 2020 and I never posted what I had written. It's taken me all this time to go back and read what I had written and I wanted to share his cancer journey now. But more than that it gave me this idea for a new feature on my blog.
I've been thinking of writing an autobiography or memoir but it just never comes together for me but I figured if I write one story at a time and post it on my blog maybe once a month, I can do that. Maybe one day I'll pull all the stories together and put them in a book but for now I'll just share some stories with you about my childhood. Some of the stories will be happy, some sad and some horrific because that was my childhood. If it seems like something that people enjoy reading maybe I'll keep it going. But because writing Ken's story of his cancer journey is what gave me the idea for this, his story is first.
If this is triggering for you, please feel free to stop reading at this point.
What Ken Went Through As A Cancer Patient
In October of 2019 Ken went to the ER complaining of chest pain. They took blood and put him over in the corner of a room with other people who were complaining of pain, like a drug seeking junkie and were getting pain medicine. He told them he didn't just want pain medicine, he wanted to know what was causing the pain. They did no further tests not even an Xray and sent him home with pain meds. They said in the paperwork that they didn't believe anything serious was wrong and called it musculoskeletal pain. He was so irritated and disheartened that they didn't listen to him that he refused to go back to a doctor and we did try to get him to go numerous times. If they had just done an Xray, they would have spotted the lung cancer.
In March of 2020, the 31st to be exact, I called 911 for Ken because he had two seizures and was in the process of having another while I was on the phone with the 911 operator. They came and got him and because of the whole Covid-19 thing, they were in gowns and face masks and made him wear a face mask as well. At the hospital they gave him a CT scan to see why he was having seizures. That's when they saw that he had several lesions on his brain. They did an MRI and saw that he also had lung cancer. Now I would have thought that they would do more testing, start treatments or something more. They did nothing because of the Coronavirus and we weren't allowed to visit him while he was in the hospital. They said that all elective surgeries were cancelled and he would have to have any further tests done as an out patient because all of those resources at the hospital were being saved for the Coronavirus patients. So for the next 21 days that he was in the hospital and rehab relearning how to use his left side again, they gave him no treatment for the lung cancer or brain cancer. While he was in the rehab facility for 21 days it was hard to get a hold of him because the operator or front desk people wouldn't answer the phones. So when his family would try to call him and give him encouragement, they weren't able to get through very often. We didn't have cell phones at the time so we had to use their phones.
Once he got out of the hospital it took 2 weeks to get an appointment with the Oncologist to get things rolling. Over the next three weeks he would have a PET scan, CT scan, x-rays, and finally a chest port surgically implanted. They told him that he had stage 4 metastatic lung cancer that had spread to his brain and his rib bones. That's what had been causing the chest pain. If the ER doctor had listened to him and done even a simple x-ray they would have caught it back then but they chose to treat him like some drug seeking junkie and sit him off in the corner with pain meds and then send him home.
We had a home health company take over his home care including physical rehab to help him walk, a primary care physician that came out to our home, nurses that came every week and occupational rehab that came out once a week. The nurses and rehab people were great but the primary care physician and his office was hell to work with. Every single month when I called them and needed refills for his many medications, they wouldn't return phone calls, wouldn't answer the phone, sometimes it would take 10 days or more just to get the refills sent to the pharmacy so I started calling early so he wouldn't run out of anything. For the anti-seizure medication one time I had to have the oncologist fill it just so he wouldn't run out.
By July 1st he still hadn't had any treatment for the cancer but they did send him for a lung biopsy in June and he received the results of that on July 9th. The Oncologist told him he had Adenocarcinoma and it was in his lung, rib bones and brain. That day the doctor admitted him into the hospital to start his first round of chemo. While there they found he had a large blood clot in his lung and inserted an IVC filter into the veins in his groin area of both legs. He couldn't have blood thinners because that would make the lesions on his brain bleed and that would have killed him.
Our daughter went with Ken to his appointments.
We almost switched to a different oncologist because she was so unprofessional. At the July 1st appointment Ken asked for pain medication and she said no. My daughter went with him to this appointment and they were both asking the oncologist questions but she either ignored them or just said no each time they asked something and wouldn't elaborate. My daughter pressed her about the pain medication and she finally gave in and gave him a prescription before he left. Can you imagine telling a cancer patient who has brain, bone and lung cancer that you aren't going to give him pain medication? Completely unprofessional.
While Ken was in the hospital getting the first round of chemo, they changed the IV because his vein stopped working and even though he told the nurse that his skin was very fragile and was tearing at the slightest scratch, she pulled the tape from around the IV, tearing a 3 inch piece of skin right off with it. I was so mad when he told me that. He was really mad, rightfully so. He asked for a different nurse next time they took the IV out when he was discharged.
When he got out, his Oncologist made an appointment for him to see an ophthalmologist on July 15th because he was almost completely blind in his right eye. The eye doctor said it was dried blood that had coagulated in his eye from a head injury from one of the times he had fallen down and hit his head. The ophthalmologist assured us that he knew what it was and could fix it. I didn't want him to have this surgery, but the doctor's office called me 3 times the next day and kept asking why we had decided not to do the surgery. They were very persistent even though I said no. Ken got mad and told me to tell them he would just do it. So On July 20th he was admitted into the hospital for eye surgery but it turned out to be retinitis and he lost what little sight he had in that eye. I was so mad. We didn't even get an apology from the doctor at his second appointment where he found out he wouldn't get his sight back in that eye.
On July 17th Ken saw the Radiologist and they mapped his brain using a CT and got him ready for radiation on his brain to try and fix the lesions on his brain. He saw the Radiologist again on July 24th and they set up a Radiation schedule which was everyday for 10 days. Radiation was hard on Ken. He started feeling a lot of fatigue after the 2nd treatment and he had a lot nausea as well. He was happy to have that 10th treatment and be done with it. It took almost two weeks before he was feeling well enough to try and eat any solid foods. At this time since March he had lost a total of 60 lbs.
On August 13th Ken went to see the Oncologist and she admitted him into the hospital to do another round of chemo. While he was there they told him that the cancer had spread to his spine and pancreas and they might be able to give him a little more time with the chemo but there was no curing it.
Someone from Hospice came in to talk to him and between that person, the nurses and his Oncologist he made the decision to stop treatment and have Home Hospice. Since they had their own primary care physician I was able to call the other one and fire them. I was so happy to be done with them because dealing with that office stressed me out all the time because I never knew if they would send over his medications. I have to say that the home hospice people were a huge help and very accommodating. They were able to get all of the medical equipment he needed within a day and all of his medications were delivered on time without me even having to tell them that he was running low. The nurses were nicer, the doctor was more attentive and they called during the week to make sure we didn't need anything. The hospice nurses came out once a week and brought all the different supplies he needed- free of charge. If I had needed a urinal, bed pads, wipes, gloves, incontinence underwear, gauze, bandaids, or medical supplies if Ken had a wound that needed to be changed everyday....all those supplies were provided free of charge. Ken ended up having really fragile skin so much so that if he got a cut and I had to put a bandaid on him, his skin would peel right off when the bandaid was taken off. So I needed a lot of gauze and tape to be able to wrap around his arm and tape the gauze to itself so the tape wasn't on his skin.
On September 15th 2020 Ken found out that he had blood clots in both legs after the doctor sent out a portable ultrasound and technician the day before. They would normally treat this with blood thinners but because he had brain lesions he couldn't take them since it could cause a hemorrhagic stroke. The other thing he could of done was to revoke hospice and go to the hospital to have IVC filters put in his legs to stop the clot from moving to his lungs to anywhere else. But his breathing was so bad that the doctor wasn't sure they would do the procedure and he wasn't sure he wanted to go to the hospital because he was worried if he was admitted he wouldn't come home. So he decided to do nothing for a while and see how things went. At this point the doctor told us he probably had 6-12 months to live and he wasn't sure this procedure would be beneficial in the long run.
Through all of this Ken kept a smile on his face and had a good attitude about everything.
When our daughter decorated our apartment for Halloween that year, She and Ken posed for this silly picture.
Early November Ken started to decline. Monday Nov. 2nd Ken had a seizure and was bedridden after that. He stopped eating or drinking much of anything and slept most of the time.
On November 13th Ken passed away at 12:45am. Our daughter and I sat with him and held his hands talking to him as he took his last breaths. I don't think he was aware of anything at that point. We sat with him for a little while and then I called Infinity Hospice and the nurse came out. She then called the funeral home who came out.
I'm glad that he was able to spend as much time at home with us as he was. We had time to say everything we needed to in that time.
That is just horrific, Mary. Our health care system is a damn mess. Pretty much everyone I know has a horror story about at least one doctor/office. Your story is error upon error, starting from day one in the ER. I’m so sorry for everything Ken and you and your daughter went through.ReplyDelete
I would love more posts like this, even if they are reposts from your early years of blogging. I’ve gone back and read some from time to time and I do think it’s book worthy. I hope your 2023 is a healthy one.
Our medical system needs help but during the initial Covid stuff, things were so much worst. I'm so glad that readers are so encouraging. It means a lot to me.Delete
When you have family hospitalized, you recognize how fragile you and they are. I'm sorry they did not do a chest x-ray. Catching the cancer early would have helped.ReplyDelete
Some nurses are as good as gold. Others, are so aloof to their patients. I guess it helps them deal with all they see. My brother died in a hospital in Gainesville, FL. We made a huge mistake in assuming the nurses could handle him. When someone is a bit out of it, the brusqueness of the nursing/orderly procedures don't bring out the best in the patient.
Add to that these workers were very young in that it was a teaching hospital. When they brought my brother back from a procedure, they were so noisy which I knew was a problem for my unconcious brother.
Hospice was unique in that they were so kind. It was hard to accept it was the end of the road through it all.
I'm sorry you had to go through all of this.
I'm so sorry for your loss. That is heartbreaking. So many families have similar stories.Delete
I felt devastated by your story of what Ken had to go through. Your daughter is a ray of light and hope in all this.ReplyDelete
Yes, she really is.Delete
Appalling that so many health professionals were so useless and obstructive and offhand. He obviously went through a terrible year of one medical problem after another and desperately trying to get proper treatment. Amazing that he managed to keep a positive attitude despite everything.ReplyDelete
Even some of the nurses were amazed that he was so good natured through all of it.Delete
That is a totally horrendous story of a total lack of care. And professionalism. I am so glad that his hospice care was good and that he could be with you and your daughter till the end. Thank you for telling this painful story. A story I fear is being repeated.ReplyDelete
Thank you. I know there are a lot of similar stories especially during Covid.Delete
This is terrible. Thank you for sharing. Our medical system is screwed up and the only thing that seems to work is hospice.ReplyDelete
That's the truth.Delete
Utterly heartbreaking. Thank you for sharing. I know how hard that must have been to share. I just want to give you and your daughter a big hug. 💗ReplyDelete
Thank you so much.Delete
I'm so sorry for the extra pain and anguish heaped on top of the already devastating diagnosis. All of the medical "professionals" you dealt with should receive a copy of this. What a shit show. (((hugs)))ReplyDelete
If I thought it would do any good, I would send it to them.Delete
It is terrible what illness can put us through, both the patients and their families. Especially as you yourself fight on a daily basis with diabetes.ReplyDelete
Illness can just devastate a person and family. The doctors and nurses some were great while others, not so much,Delete
What a heartbreaking journey for the both of you! I'm sorry you didn't have better doctors helping you through it all, and that COVID made everything worse. Reading your story makes me even more grateful for the kind doctors at the hospital that treated my dad when he was diagnosed with stage 4 stomach cancer in 2018. He passed away 50 days later, but they took great care of him. Thank you for sharing Ken's story.ReplyDelete
I'm so sorry for your loss. I'm glad you had a good team of doctors and nurses.Delete
As I read this story, I felt the magnitude of the pain and frustration. The depth of your words truly touched my heart. I'm so sorry for your loss and also that your husband had to suffer at the hands of so much imcompetence. I do know what it's like to have to watch someone you love suffer and slowly fade away. It's heartbreaking and yes, it takes time to have the strength to be able to share your pain with others. Thank you for sharing Ken's story with us.ReplyDelete
Thank you, I really appreciate that.Delete
That really is sad and sure horrible treatment. You should seriously contact a lawyer to go after them, all of them. So many of those shouldn't have a license to practice medicine in any state.ReplyDelete
I have no proof that much of that happened so I don't know if it would do any good.Delete
I have issues with our medical system.ReplyDelete
Coffee is on and stay safe
So do I.Delete
This is horrible Mary. I am so sorry for the way he was treated and for the missed opportunity to get treatment during the early stages. Hugs to you and your daughter.ReplyDelete
Thank you, Kimberly.Delete
What a painful journey for you all. This is all quite recent Mary. Thanks for sharing your experience. May your husband rest in peace.ReplyDelete
My friend has just been diagnosed with terminal cancer, as her lung cancer has spread also. Her poor husband has to be strong but I fear a painful journey ahead.
I'm so sorry to hear that. Cancer is awful.
I remember you shared bits of Ken's story when it was happening and my heart broke with each story piece. You have a wonderful writing voice and it comes through when you write about your family, your neighborhood, and yourself. I hope you do keep up this storytelling segment of your blog. I can see your story being poignant for others in your shoes with a loved one with cancer and fighting the system to get good health care and for those who are health care workers to see the other side of it.ReplyDelete
Thank you, Mary!
I really appreciate the encouragement in keeping this kind of posts going.Delete
I'm glad this story has been received so well, I know that a lot of families have been touched by cancer.
Those were terrible times...Covid...and I am sorry that was even harder on you. My older sister was in hospice for about two weeks and I remember the workers...they are some of the best, nicest people I have ever met. Your story is amazing, told in a blunt way, pulling no punches. I feel our medical profession leaves a lot to be desired, but during Covid I cannot imagine how overburdened and understaffed they were. I pretty much look at my primary doctor as the keeper of the records. LOL Thanks for sharing and I look forward to reading more of your stories.ReplyDelete
sherry @ fundinmental
Thank you. I know they were very much overwhelmed but it saddens me just how many times the medical professionals failed him.Delete
My heart breaks for Ken and everything you and your daughter went through.ReplyDelete
Thank you for sharing this painful story.
Hugs and blessings, dearest Mary.
I'm so sorry you had issues with Ken's healthcare during such a painful time! I remember when you were going through this. I'm happy to hear that at least the hospice team was way nicer and easier to work with. My heart goes out to you and your daughter, Mary!ReplyDelete
The hospice team was amazing.Delete
^*Hugs to you*ReplyDelete
Ken's treatment was very unprofessional. I'm glad that he got to spend most of his time with his family. So sad that you were treated terribly. Thanks for sharing this personal memory and experience with us.ReplyDelete
Thank you, I appreciate you stopping by.Delete
Thank you for sharing Ken's journey. I can't imagine what you and your daughter had to endure during that time, especially with the complications of covid. I'm so sorry you had to deal with awful health care for too long. *HUGS*ReplyDelete
Thank you, I appreciate that.Delete
Thank you for sharing, Ken's cancer journey with us. It's just so frightening and a good reminder of how fragile we all are. I am truly sorry for all you and your daughter had to go through. And to have to go through all this under COVID conditions too . . .ReplyDelete
Our healthcare system really does suck. It's very disheartening. I know that the COVID situation has played some part in that in recent years, but it isn't just COVID. COVID just made those cracks even bigger and highlighted others that weren't so obvious before.
I am glad hospice came through for you though. My family has had good experiences with hospice agencies too.
Sending hugs, Mary.
The hospice team was amazing.Delete
It must have been very scary for Ken to go through all of that. Even trying to keep a positive attitude, I'm sure it was difficult dealing with incompetent health care professionals while declining in health. I'm sorry for your loss, Mary. Thank you for sharing Ken's story. His memory will live on through the stories and love you have for him.ReplyDelete
I know it was. It never should have been this hard.Delete
I am so sorry that you had to experience these things. Doctors really need to take the time to do the tests. The first time my mom had cancer the doctor didn't think it would be cancer and didn't want to do a biopsy. My mom insisted and they did it. It turned out to be a very aggressive cancer. It is so frustrating.ReplyDelete
That is incredibly frustrating. They need to listen to us more.Delete
I remember most of these things from your Apartment Hell posts back in the day, but this post was more detailed, so...thank you for sharing your experience with us and raising awareness about the good and the bad in the health care system. I have to say it's a bit of the same everywhere - most of the times, it's the single, good-hearted (or good-willed) operators who make the difference instead of the whole system working as it should. Maybe, just maybe, Ken could have stood a chance if they had taken him seriously the first time. We have to fight tooth and nail for our own health sometimes, for goodness' sake. And if you're alone, or aren't strong enough (which, if you're sick, you very likely aren't) to pick that fight, you slip through the cracks.ReplyDelete
I'm totally willing to read your autobiographical posts BTW 🙂.
That's so true. We had no idea what as going on, but I'm not sure how early we would have had to caught or to make any kind of real difference.Delete
Thank you, I plan on writing a few childhood stories and see how they are received.
How annoying they just send him back with pain meds at first and didn't do the scan. It's so hard to get the health care people need sometimes and it shouldn't be like that.ReplyDelete
I think it's admirable Ken kept such a good attitude throughout it all, as it all sounds so hard to go through. I so sorry for your loss.
It definitely shouldn't be as hard as it is to get what you need.Delete
I'm so sorry, Mary. It's terrible how medical services can be uncaring and/or judgmental based on where one lives, or what type of insurance they have. I've gone through the problem of a doctor thinking I was drug-seeking myself. Ken's initial situation before hospice tok over makes me sick. I think telling his story is a good thing because a lot of people don't know how others struggle to get good medical care. 💔ReplyDelete
I know I'm glad that I told his story and put it out there. I went through 8 different endocrinologists before I found one I could work with,Delete