Waiting

A couple of days ago, I was getting upset with the hospital about waiting so long to get results that may determine if I am going to live or if I am going to die. The hospital, in my opinion, was not acting in my best interest by keeping me hanging by a thread. I posted the "conversation" on facebook and this is how it went:

Bruce G. Larson‎ to Florida Hospital Altamonte

November 19 at 2:49pm ·

As a patient, I see that there are too many doctors and affiliated organizations that make up the Florida Hospital network and they have not learned to work together for the benefit of the ailing patient. I don't know if they even communicate with one another other than sending reports back and forth. I have cancer and I have been left hanging too many times. It's all easy for them, but for me, it may mean life or death. I am very disappointed.

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  Florida Hospital Altamonte Hello, Bruce. We are so sorry to hear about your experience. We would like to speak with you about it directly. If you would please direct message us with a phone number where we can reach you, a member of our patient experience team will contact you. Thank you for taking the time to share your feedback.
  
  
• Bruce G. Larson And when will you call back? I left the number about 30 minutes ago
• Bruce G. Larson Well this is like trying to find your ICU nurse - they disappear somewhere...
  
  
• Marjorie Bruce, can you publish in your newspaper? You have waited TOO LONG and suffered not only from cancer but poor patient care management. The strength of a top notch care facility us a real time medical record.
  
  
• Maxine I am so sorry you are experiencing this. Keep the faith.
  
  
  Bruce G. Larson I still have not heard from Florida Hospital. This is quite odd since we are dealing people's lives and if that is not important to them, we are also dealing with millions of dollars. If I call the hospital, I have no idea what department to even start with.
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    Florida Hospital Altamonte Hi Bruce,
    
    We apologize for the delay in response and have contacted a patient experience representative who will reach out to you today.

• Jeffrey Went through the same thing with my dad...wait till they start competing for your "business".
  
  
• Bruce G. Larson Well maybe if they start competing, I will get better service? 
•  Bruce G. Larson I can't help but thinking of the Cancer Treatment Centers of America and how the commercial shows about 6 to 8 doctors gathered around a table discussing the treatment plan and progress of a patient. And really that is the way it should be - if the disease requires the expertise of several doctors with different specialties then they must work together. In my experience, it seems almost like an assembly line where I go from one station to the next. Some status reports might follow me to the next station or they might make sure the reports are there before I arrive. We had doctors with differing views on medications so that leaves me, the patient, wondering who is right and who is wrong.
  
  
• Bruce G. Larson Well someone from the hospital called but did not leave a message. The number on the caller ID is a general incoming phone line. I guess I will - yes, wait - to see if they call back.
  
  
• Bruce G. Larson We called them back and asked for someone in the patient care dept. The woman was not really sure what was going on, but she took the info and is looking into things for us. Vi did a great job working to resolve this mess.
  
  
• Marjorie Post this on your local newspaper 's blog
  
  
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  Florida Hospital Altamonte Hello Bruce, A member of our patient experience team called you back yesterday afternoon and left a voice mail with her contact information. If you would like to speak to her please call her today. We would love to assist you and help resolve any issues you might be having. Thank you for reaching out. All the best.
  
  
• Bruce G. Larson Yes, we did receive a message but we called back and talked with someone in administration and we were please with the results. In fact, promptly at 9:00am this morning (actually, perhaps 8:59am) we received a call to schedule the CT assisted fine needle biopsy with full instructions. Vi and I commented that they are doing the way they are supposed to be doing it now. It is our hope, that this prompt attention to patient needs is carried over for all patients at Florida Hospital. Trust me, the hospital can only benefit and so will the patient.
• Bruce G. Larson This is not the competitive auto repair business. We are dealing with human beings and their lives and their quality of life. Hell, the hospital won't even pay for the "tow" back in if something goes wrong. But they should do all they can in the first place and all necessary and known precautions to assure the patient is well-cared for.
  
  
• Marjorie The US does not rank high against other nation's healthcare. We lack "caring" in the healthcare equation.
  
  
• Bruce G. Larson Yet we have the ability to change that. Hospital administrators: Listen to the patients and listen to the nurses...
  
  
• Cindy Bruce, I take it they are not a Comprehensive Cancer Center? Mine is and the doctors roundtable my case.
  
  
• Bruce G. Larson The roundtable, Cindy, is precisely what I was referring to earlier in this conversation.I feel the hospital and the patient and their families would benefit greatly. In the healthcare field, it often can mean the difference between life and death and quality of life.
  
  
• Wendy The way I look at Cancer Doctors and group practices, you should be assigned to ONE Main doctor. From there, he should confer with other doctors in other specialty areas with cancer and healthcare for opinions, treatment options and if necessary a visit to those doctors. From there, those doctors should get with your MAIN doctor, tell them what they found, what they recommend and let your MAIN doctor write the orders. I do know doctors send reports and recommendations to your primary and yes they do read them. I just feel like you will be seeing your MAIN doctor for everything and he should the first in line to know EVERYTHING that is going on in your treatment, scans, biopsies, etc. He should know the whole you from top to bottom. This way, there are no errors. Groups are great because they talk to each other a few times a week and go over all the cases and get each other's opinions. But in your case, it sounds like Florida Hospital is dropping the ball somewhere. My girlfriend goes to Moffitt here in Tampa. When she does her follow-up scans and blood work, she has to stay all day because they read them, go over them and tell her the same day what is going on. I like Moffitt because of their care and treatment. She is going on 5 years with a rare kind of cancer and two bone marrow transplants later....is she cancer free? Yes for now. It did come back and she got a second transplant. She did get graft vs. host disease and that in itself presents a whole new set of issues. She has her team in Tampa working with her doctor in Orlando to help get this under control and get her well. I feel the frustration you are going through With cancer, time is of the essence, It's not the type of thing you want to let go for weeks. It is the type of cancer that needs treatment NOW. Good luck with this. Start calling them every half hour till you get someone. Better yet, get in the car and go down there.
  
  
  Bruce G. Larson I agree with the "ONE MAIN" doctor concept, Wendy. It makes perfect sense. A "central communication command" for associated medical and patient needs. I am also having problems with return to work issues (which doctor takes care of this) and now I don't see my surgeon for 2 months, so who is my contact for medications, general questions, concerns? This is where we, the patients and their families, are left hanging. The hospital offers no guidance whatsoever.
  
  
  • Wendy Your primary doctor or main oncologist is the one to issue medications, but having to wait two months to see the surgeon? Is that for the biopsy in the lung??
  • Bruce G. Larson No, that is follow-up on the mouth. My "case" will be transferred to a doctor specializing in lung cancer. Why do I feel like I am in a pinball machine>
    
    
  • Rita so sorry

Belle It makes me very sad that patients need to have an "advocate" and/or create a public stir because PEOPLE with whom we entrust our care DRoP the ball!! It happens far too often. We become a mere price tag, account number, or annoyance on the phone! What the hell more do they "expect" out of sick patients??

• Bruce G. Larson Imagine those that may not have the ability to realize something is wrong. The elderly who may not be thinking clearly, the mentally ill who may not understand, those who are alone and have no one to see what is really going and what about those who are simply too ill to know much of anything. We should trust everyone in the medical field. We don't have much choice. Once they start on us, how do we know when it us time to stop and change doctors? We were in the lobby of a doctor the other day and someone was hoping they would not have to see this particular doctor because he had a poor "bedside manner." It seems they choose this field for a reason. I hope they are always able to remember that reason and what factors inspired that reason.

  
  
• Belle Yes ! I see the Big Picture as you do, my friend ! Blows my mind!

  
  
• Belle If you have an ADVOCATE make the calls, you will get better treatment!! What does that say about some of the receptionists, nurses, physicians, and other staff members?
  (Actually, the ADVOCATE is getting better treatment!)

Yet another set-back

More headaches

We thought things were looking pretty good. The uncertainty surrounding the PET Scan results was laid to rest since there was no more cancer discovered in the mouth.

They did find a small mass in the lower right lung that appeared to be cancerous. The next step was to see my oncologist, have him review the findings and determine the new plan.

This plan, as we understood it, would include a fine needle biopsy of the tissue in the lung and then move forward - possibly involving surgery followed by chemotherapy to assure that new little beast was gone for good.

Well we got the oncologist's office early since we were anxious and looking forward to getting this surprise phase of the roller coaster ride off to a smooth start.

No such luck. I had blood drawn and my port flushed as part of the normal procedure at the oncologist. Once we met with the doctor, he said it was all put on hold since the surgeon's office failed to send the full PET Scan report.

He will need to get that information and then schedule another appointment to discuss those results. This is what we were supposed to do at the appointment today.

The oncologist will need to determine if this cancer discovered in my lung is a separate cancer incident or is secondary to the mouth cancer. In other words, did the cancer spread.

I have a return to work order scheduled for December 1. Now, we don't know if that is a good date or not. I may need surgery again and see what follow-up treatment will be administered.

I posted my displeasure on facebook and someone at the hospital did not appreciate the negative reference for the public to see. They contacted me within the hour and asked if I would message them with a phone contact number. I complied immediately, then waited. Again. For over an hour and by that time it was past 5:00 pm so we assumed this was going to be first on the agenda tomorrow.

We want to get this behind us. We want to celebrate a newly-declared cancer-free status and start our lives over with a whole new outlook. Instead, we wait.

Update: November 20, 11:27 am. Someone from the hospital left a reply on my facebook page indicating a patient care representative will "reach out" to me today (sounds familiar for some reason). This is the response:

Florida Hospital Altamonte Hi Bruce,
We apologize for the delay in response and have contacted a patient experience representative who will reach out to you today.

In the meantime, I will wait. Again.

The fear of cancer

Cancer is a serious disease and there is still a lot we have to learn about it. It is that lack of knowledge, I think, that can cause us to fear the disease as much as most of us do.

I will try to explain the fears I have with cancer. It will be difficult because the feelings and emotions are very deep and complex. The word itself, to me, is frightening. The cause, in many cases, is not known.

Treatment is not always successful and the treatment methods used are quite old, although, they have been refined over the years. And these methods leave behind a trail of destruction killing good cells as they kill the targeted cells nearby.

The disease can strike anyone of any race or background, of any age, in any region. Once it finds a home in someones body, it can move like a freight train knocking out anything that gets in its way. Chewing like the familiar Pacman chompers.

Cancer scares me and while I am more familiar with it now that when I was first

introduced to it in March of this year, I am still ignorant of the disease. I find myself asking questions and wondering if it will continue on its destructive path or pop up somewhere else just to prove its savagery.

Usually, the doctors do not know either and they might not speculate for fear it might be wrong. I can understand that to a point, but as a patient, I would like to have some idea of what to expect. It's my life we are talking about here.

On the brighter side, I didn't know that there were so many survivors. The American Cancer Society says new estimates of cancer survivors in the US has reached almost 14.5.

But take it from me, those numbers are meaningless to current cancer patients. All we know is what we are experiencing now. We are instructed to keep a positive attitude. It's supposed to help increase our chances of survival. That may or may not be true, but it sure makes the roller coaster ride a lot smoother.

Almost everyone in the US will be touched by cancer in one way or another. They may have been diagnosed, or a loved one or long-time friend or any other acquaintance. It is sure to happen and the more we know about cancer, the better off we will all be.

One of the best ways to beat cancer is early detection. The sooner we discover we have cancer, the sooner the medical staff can start the treatment program. "Nip it in the bud," as Barney Fife would say. And he is right. Catching the cancer before it expands its claimed homestead in your body, the better off we would be. Further, it reduces the chances of giving the cancer the opportunity to spread throughout the body. If in doubt, check it out! See your doctor if you have any suspicious lumps or other abnormal conditions. It cannot hurt, it can only help.

Check out the WebMD health check for cancer here. But to be certain, get with your doctor. It could save your life.

PET Scan update

It turns out there was no cancer found in the mouth again which is great news - mouth surgery and the recovery is awful - add to that reconstruction - it is a horrible thing to go through and I feel for all of you that have gone through this or will be going through it.

There was a cancer cluster found in the lower part of one of my lungs. I will be getting a biopsy of that soon then they will decide how to attack that. Have to have an appointment made.

I do not have to see the head and neck surgeon for two months. Overall, it is good news, prayers were answered - I know this. I still have lots of recovery ahead from the radiation therapy. I received the maximum amount a person can receive. So they may be able to remove the cancer in the lung followed by chemotherapy. I meet with my regular oncologist Wednesday.

Corinthians

My son's birthday

Scott and Laura Larson

Today, November 16, is my son's 30th birthday. His name is Scott and I love him dearly. The day after his birthday, Monday, I will learn the results from the PET Scan.

I pray that I will have good news for him. He is waiting anxiously to hear what the doctors have to say. He lives in Denver, Colorado, so we do not see each other as much as we both would like to.

Last August, he married Laura Smith in Las Vegas. It was my first time to Vegas and that trip will probably be my last, but I would not have missed his wedding for anything. Laura is a wonderful woman and I feel very comforted when I see the way they get along with each other. They have a good marriage and I am very proud of my son and Laura.

As with most parents, I would want Scott to bury me rather than I bury him. Still, I would like to live longer to be able to continue the work I do with writing for hypeOrlando - Orlando helping Orlando and for the Orlando Charity examiner. I would want to continue working with various charities and to continue serving on the board for New Directions Community Outreach.

Of course, I would also like to be here and grow old with Vida and to be there for my parents and my brother and sister. We are a very close family. I do not recall any arguments that created any grudges or hard feelings that were not ironed out.

Sadly, I see many families that are torn apart and was never really able to understand how that could happen within a family. Not with ours.

For now, I can say Happy Birthday, Scott! May we enjoy many more birthdays to come. And may the quality of my life not be jeopardized. I just feel that this is the way it should be and am hopeful the news tomorrow will reflect that instinct.

Who's to blame?

What do we do or how do we respond when someone else finds blame for the cancer that we have?

It happened to me. It was like why did I ever have to go and get cancer and why should they suffer when I am the one with cancer.

The factual part first. They doctors do not know for sure what caused the cancer. It could be any one of several factors. It appears they do not know enough about the disease to even determine its cause. Look at the young children. They have not really lived long enough to have started any bad habits or diets. Yet they suffer right along with the rest of us.

Certainly, cancer is not fair. There is no disease that could ever be considered fair. Things happen to people and that is something we need to learn to deal with. We can do all the right things, it seems. We can see the doctor and do everything he or she says. We can pray for our continued health. But something sneaks in and takes over.

I know a musician who looks like he is in perfect health. He works out, eats health foods and tries to do everything to maintain a healthy lifestyle. But shortly after I was diagnosed, he learned that he had a softball size cancerous tumor in his chest cavity. As far as I know, how he contracted this remains a mystery.

We really cannot blame someone who has cancer. It is better to deal with the disease and focus on whatever it takes to defeat the cancer. While many factors can contribute to a delay in recovery, stress is certainly plays a major role in limiting the effectiveness of any treatment program.

So lets try not to play the blame game. Lets do all we can to get healthy and put the cancer chapter behind us.