Overcoming depression

Depression is one of the most difficult issues a patient that had been diagnosed with cancer has to face. I am a physician who had been diagnosed with throat cancer four years ago and am writing this manuscript to share my personal experiences as a cancer survivor and a clinician. You can read my story and read my book on my experiences as a patient with cancer at my Blog: http://dribrook.blogspot.com

I am doing so hoping that my perspectives will assist other individuals who had undergone similar experiences cope better with their situation and hopefully gain insight into their lives. It is also presented to health care professionals who care for patients with this illness in the hope that by gain insight into the patients� world would be able to better assist them in their plight.

Coping with and overcoming depression is very important not only for the well being of the patient but may actually facilitate their recovery and may even increase their chance for longer survival and perhaps even ultimate cure. There is growing evidence in many scientific studies that there is connection between mind and body. Even though much of these connections are not yet understood it is well known by experienced practioners that individuals who are motivated to get better and exhibit a positive attitude recover faster from serious illnesses, live longer and sometimes survive immense odds.

There are so many reasons to become depressed after learning about cancer and living with it. It is a devastating illness to the patients and their families and medicine has not yet found a cure for most types of cancer. By the time cancer had been discovered it is too late for prevention and if the cancer had been discovered at an advanced stage the risk of dissemination and ultimate cure is significantly decreased.

Many emotions go through the patient�s mind after learning about the bad news. �Why me?� and �Can it be true?� After first becoming stunned by the news, feelings of denials, which are followed by anger, with ultimate acceptance of the new reality. It is believed that depression is a form of anger. Perhaps anger at the new devastating reality.

The patient has to face their ultimate mortality, sometimes for the first time of their life and have to deal with all the immediate and long term consequence consequences on them and their loved ones. Paradoxically feeling depressed after learning about the diagnosis allows the patient to accept the new reality. By not caring any more it is easier to live with the uncertain future. �I do not care any more what happens �feeling makes it easier for a while. However, this coping mechanism carries a heavy prize because it can actually interfere with getting appropriate medical and surgical care and can actually lead to rapid decline in the quality of life.

Hopefully a patient can find strength within themselves to fight the depression. In my case after I returned home from the extensive surgery I had to remove my cancer which included also the excision away of my vocal cords, I was overwhelmed by the daily tasks I had to perform and the new realities I had to accept. I was mourning the many losses I had experienced, which included my voice, my wellbeing, and the need to accept many permanent deficits such as not having a normal voice any more and having to speak using a weak and rusty voice generated by a prosthesis that connects my trachea and esophagus. I felt that I had to make an early choice between succumbing to the creeping depression and let it consume me or become proactive and fight back and return to life. I chose the latter because deep inside I had a very strong desire to get better and overcome my handicaps. I also realized that my struggle is not over and will be with me for a long time and that I will need to conquer the down hill slope again and again.

The driving force on many occasions to become proactive and resist depression is my wish to set an example for my children that one should not give in the face of adversity. I new that they may and unfortunately would also have to face difficult in the future and did not want to leave them the legacy that their father gave up and did not do his best to get back to his feet. This was and still is a driving force that I resort to whenever I feel down.

Support by family members and friends is very important. Feeling that ones� continuous presence in the world and actual involvement in their lives is very helpful in reigniting the will to go on. The involvement and contribution to others lives can be invigorating. As a parent� or grandparents� one can draw strength and will to go on by seeing and enjoying the interaction and the impact one has on them.

What I found out to be helpful was to become re involved in activities I liked before and find a continuous purpose for my life. I started to return to the hospital to participate and teach in medical rounds and listen to medical lectures. What was most encouraging and rewarding was that my contributions impacted and improved individual patient care. I felt that I was making a difference again. This made me want to return to the hospital and teach even more. In the process of helping others, I was also helping myself.


I was also able to gradually return to many of my other routines. I started with simple challenges such as reading medical literature again, accepting invitation to review articles submitted to medical journals, learn how to take a shower without aspirating water, and even simply walking more. I gradually became able to ride a bicycle and even climb to the top of a mountain with my family. Even though I realized that the quality of my voice is not the same as before, one of my greatest comebacks was to be able to teach and lecture again with the help of a microphone. Each of these small steps made me feel better and stronger. I was discovering the world again, quite like an infant learning to walk.

Seeking the help of a mental health professional can be very helpful. I was fortunate to be assisted throughout my illness and recovery process by an excellent, compassionate and skillful social worker. We discussed various issues relating to my recovery process, as well as my anxieties and frustrations. Having a caring and competent physician and speech and language pathologist that can provide continous folowup. Their involvement can help deal with any emerging medical and speech problems are very important for the sense of well being.

I Brook MD

Dr I can feel your pain and understand. I have gone thru many surgeries and came out smiling or pretending to. As I type this, I am ready to go to Allegheny General in Pittsburgh for the 3rd go around with an Abdominal Anneuersm in 2 days. I have never asked or even thought Why Me. Esophagus has been repaired using the Nissen Fundiplication which is one that never lets up with the pain. 2 elbow surgeries and 4 shoulder repairs, both rotator cuffs and 2 times on the right bicept tendon. Kidney stones 11 or 12 times. Many scopes and biopsies of my Esophagus since 1996. I won't include the OC surgeries and biopsies. I like the post you put in here and it sure might help others with this dreaded disease we have. Not much of a tongue and no teeth. Losing lower jaw in the next few weeks too. But , this sure beats the alternative. Good luck and I have you in my prayers.

My baby brother has finished rad & chemo tx and is having a difficult time. Everything seems to be going wrong in his life - his cat had to be put to sleep, he can't eat (still has feeding tube), his wife's place of employment will be shut down for a month or so due to fire - it's just unbelievable what stuff has happened in the past month. He's coming to visit - what can I do or say to help him?

Not being able to eat is the WORST. I don't know how people who can't eat for long periods (or forever) do it. I know you have to eat, but if possible do not openly show how much you enjoy eating in front of him. My family would come to visit to supposedly cheer me up, but they can't have a get together without snacks, and they would just chomp away on chips and dips in front of me until I was ready to scream when I was on my feeding tube. Playing cards and other games were always enjoyable to me when I couldn't eat. Just being company and his big sister I'm sure will cheer him up.

Jim - you are one very special guy - and you've brought many smiles to the rest of us. I like what you said about coming out smiling "or pretending to be" because if you can pretend for long enough, you begin to feel it and believe it. One of my favorite books to read to my children when they were little, was "The Little Engine that Could" with the words: "I think I can, I think I can. . . " and pretty soon that little engine DID get over the mountain!
RandysSister - My son, did not like for people to say, "Well, it could be worst!" But he did enjoy company. As his big sister, maybe you could ask him to make a list of anything he might need or enjoy and let people who come to see him know. My son enjoyed playing video games with someone, and really appreciated it when one of his friends brought him a new video game. It helped to bring him up a notch from being depressed or thinking dark thoughts. One of the first times my son smiled was when I took him to see a funny movie. I think it reminded him of his own sense of humor.
Bloop - you really brought up something I hadn't thought of and so important about not eating in front of someone who couldn't! It's true, there are so many other things to do that are important when getting together with family or friends.

Here I thought there would never be a time when I was glad that I will never be able to eat or drink again but just use a feeding tube. But thanks to OCF and Bloop, it has happened.
Because otherwise I'd be reluctant to assert that "not eating" is not the worst thing to happen with oral cancer. I don't have to worry about someone posting on how I don't understand the total deprivation.
Bloop is right that every social occasion ends up with a food component - and not being able to take communion at Mass is something I'm still not over. Yet when you read the OCF posts, there is enough suffering to go around for everyone.
Charm

Bloop, thanks for your reply. My brother is staying at my mom's house and she will NOT be cooking. We all feel so guilty eating around him. I like the idea of games, maybe that would be entertaining. My brother tries to act like people eating around him doesn't bother him but it does. Plus, the smell of food cooking makes him nauseous. I didn't realize he could have his feeding tube in indefinitely. After radiation tx does the sense of taste change a lot? Is eating a disappointment because of taste loss? So much to learn so little time before he arrives.

I certainly hope Randy is not on a feeding tube very long if it upsets him to see other people eat. Trust me, it's a self-defeating attitude. It's true everyone is different, and I would have felt guilty if my loved ones and family didn't eat around me. As I posted above, social situations and family reunions always involve food - the sooner Randy gets used to it, the better IMO.
The point about cooking smells is an excellent one as they did make me nauseous at first. Now however I savor the smell of food as I won't be eating it.
Finally, games are indeed good. Randy is lucky to have such a caring sister who worries about him. Love is something Cancer can't take from us unless we let it.
Charm

I'm sorry but you really can't make people who can eat feel bad. That's just not healthy for them or you. We do feel bad that you can't eat like we do, but how can you expect people NOT to eat to stay healthy themselves? Especially your caregiver. Could you imagine if they didn't eat and how that would affect taking care of you when they themselves don't have the stregnth to take care of themseleves because they feel bad so they don't eat? That's just not right or healty for anybody. I disagree on not eating in front of Ron. He doesn't mind, I cook all the time and he loves it and the smell. My cooking helped him in surviving and getting his weight back when he had Non Hodgkins Lymphoma and as soon as he gets better with his swallowing I hope to get his weight up a bit if not all the way up to where it was. Even his Doc commented on how his weight was back to normal and he said it was his girlfriends cooking. His swelling in his throat is getting better and he is slowly getting better with eating and I apoligize to those who will never be able to eat food again. The nausea thing though is a different story. How long ago was he diagnosed and had treatments? Hopefully the nausea will subside and also there is medication to help with the nausea. what is you mom gonna do to sustain herself while he is there? You can't hide eating. I'm sorry but I don't think it's selfish for us to be able to eat, it's survival and staying healthy ourselves to take care of them. We have to eat.

Hey Dr Brooks - the OP of this thread

Although I am guilty of participating in the hijacking of your thread, (although in our defense, not being able to eat is very depressing and worrying about a patient's feelings is not very cheery either so there's a tenuous connection), I did click thru to your link and read your story/book.
I almost didn't since your original post seemed more appropriate to your medical colleagues who don't have a clue about what we go through as opposed to OCF members who have lived through it.
I'm glad I did though, since your operation horror story is the worst I heard of for oral cancer: they used a laser to take out the scar tissue and miss the actual cancer tumor itself and don't even realize it until you have been in the ICU and Pathology reports their error. Surely depressing.
What may be more depressing is your report that you had to leave out not only that error but all the other mistakes your doctor made in order to get published in a journal that doctors read.
Charm

Hi Charm,

I haven't got time to read a 282 page book. As one who has had the same surgery, what link did you click on the find out about his 'surgical nightmare'? That part I'd like to read.

Take care,
Eileen

Eileen

Well, the "free" version is hardly 282 pages. On Brook's blogsite on the far right are a series of hyperlinks, the first saying Home and the second: Read my Book.
When you click on that, you get the whole story so I can't hyperlink it to you, but I have been a "speed reader" since 8th grade (actually won contests) so I just clicked on it, sped read it again and cut and pasted it out for you to read. While we may differ sometimes on issues, I have always found you both fair and fun so enjoy
[quote]Dr. Cooper began, �I would like to discuss with you the results of the pathological examinations. I have some good and some bad news. The good news is that there are no signs of cancer spreading into the lymph glands on the left side of the neck. The bad news is that the tumor is still in your hypopharynx. We have not yet removed it. The endoscopic examination done today confirmed that it is still where it was before.�
Words cannot express the extent of my feelings when I heard the news. I was stunned. How can this be possible? The surgeons didn�t remove the whole tumor last week? They had assured me they did, and the margins that were left around it were all negative. My first response was utter surprise and disbelief. Anger and loss of trust came later. Accepting my situation and making decisions for the best course of action came last.
The surgeon proceeded to explain that the tissue they removed with the endoscope was not the tumor, but rather scar tissue that looked abnormal. That abnormal area was only half an inch away from the cancer, but was higher up in my airway, so that when they inserted the endoscope, they observed it right away. Because that area looked very suspicious, they assumed that this was the tumor. They removed it and sent it to the pathological laboratory without confirming that what they took out was indeed cancerous. They then proceeded to take biopsies around the resected area. These biopsies were immediately frozen and inspected in the operating room and were found to be cancer-free. When the pathology laboratory read the resected tissue suspected to be cancerous several days later, to the surprise of everyone, there were no cancer cells to be seen, and the tissue contained only scar tissue. To my question why they did not do perform frozen sections of the tissue suspected to be cancerous in the operating room, Dr. Copper responded �We were convinced that what he had removed was the cancer.�
Obviously, the surgeons erroneously assumed that they had removed the cancer. However, if they would have requested that the pathologist who was present in the operating room confirm this by looking at the frozen sections of the suspected cancerous lesion, the error would have been discovered right away and they would have proceeded to search and ultimately remove the cancer, which was so close by.
It was no surprise that the biopsies around the scar tissues were all negative. The surgeons discovered their mistake only when the pathological report came back and showed only scar tissue in the specimen. What was left now to do was to go back and attempt to remove the actual tumor. The surgeons informed me that they were planning to do just that in two days.
I was puzzled and upset by the incompetence of the surgeons. I had so many disturbing questions for them: �Why is this not the standard of care to immediately study by frozen section the removed tumor right in the operating room? This could have prevented me from needing another surgical procedure. Furthermore, this failure has delayed the removal of the cancer for nine additional days. How could you have missed finding the tumor you observed several times before?�
What was even more upsetting was that a few days prior to the surgery, my surgeon reassured me that he was going to take biopsies of the cancer before removing it and confirm the presence of cancer at the site. His email just prior to my surgery said, �I feel confident that an initial endoscopic approach is reasonable in your case. We will, of course, take multiple mapping biopsies, from both your new primary site and old site.�
Later, I learned from the otolaryngologist that another adverse consequence of the failure to remove the cancer on the first surgery was that each surgery induces extensive local swelling and inflammation, rendering immediate surgery in the affected area more difficult. This was especially significant in my case because my tumor was located at a very narrow and difficult to access and visualize area. In other words, the best chance for successfully removal of the cancer by laser had been in the first surgery. After the initial surgery, the narrow passage where the tumor was situated became inflamed, irritated and swollen, and its diameter was therefore reduced. This made any follow-up interventions more difficult because insertion of an endoscope and visualization of the area were harder.
It was very difficult for me to contain my feelings of extreme anger and my loss of trust; but I knew it was inappropriate for me to express these emotions freely and in a non-inhibited way as I wished I could. I was very vulnerable and depended on these surgeons who were still taking care of me. I had close professional relationships with many of them for over twenty-seven years and liked them very much as individuals. I only wished I could tell them how angry I was and walk away to get treatment elsewhere. I regretted not having the laser surgery done by surgeons who had more experience with this procedure.
I realized then that experience is very important in this kind of surgery, and since throat cancer frequency is diminishing in this country, there are fewer patients with this type of cancer[/quote]
Charm

I can watch people eat steaks and all the other goodies and it doesn't both me as I suck down whatever I have made into broth. I do enjoy the odors of good food tho. I would feel bad if I made the others unconmfortable. When my youngest makes BBQ meats , he tries to get me some fat for to suck on and enjoy. That helps.

Thanks Charm. Boy that IS a bad experience. Am I to assume that the reason he had the total laryygectomy was because they failed to remove the correct tumor by laser the first time and they couldn't remove it by laser after that?

Dr Weinstein had hoped to be able to remove my tumor by laser, but when he put me under, he discovered it was too close to the esophageal opening to get a clean margin. Had he removed it by laser, I would have been on a peg for life. Another surgeon did my total laryngectomy. Inconvenient, but I've lerarned to live with it.

Take care,
Eileen

Jim I love the way you think about eating.I only wish Ron would too. I've offered him the fat to suck on when I also cooked beef brisket on the grill, he'd get all excited ya he will eat it and when the time came he refused. BUT he is getting better day by day with eating a lil something. Yesterday it was Ham and Bean soup I made and pureed it up for him, he complained it was only have a mug full, I didn't know how much to give him because he don't usually eat anything. Oh well will fill up a big ol' mug next time for him! Now he's on a Burrito Supreme kick, he said he just wants to suck out the inside of it. lol Taco Bell here I come! Whatever it takes, today he had his 6 mo apt with his Oncologist from his bout with Non Hodgkins Lymphoma, I asked him how much does he weigh, he said bout the same(130 last time)I asked him again how much(3x's) and he finally told me, 125. 6'1 125...God I need him to eat more and smoke and drink beer less. Now don't go preaching to me for help for him or myself, I get it. But he don't. So...I told him...he has to leave my house, because he is killing himself and I am not going to watch him die. I don't know what else to do for him.

Dr Brook, welcome to OCF. Thank you for taking the time to write such a long first post as your introduction. Im sure even though you are a doctor that you will learn many things about OC from this site. Wishing you all the best.

Suez - In my own experience with my son's recovery, I found out that tastes can change from day to day or even minute to minute. When Paul said he liked something I would go buy a lot of it only to find out he didn't like it anymore so it's better not to stock up on stuff but just get a small quantity cuz you never know how long the taste for it will last. When I would ask my son what he weighed, he said the same thing: "the same" meanwhile, his jeans were falling off his hips (like those "pants on the ground" people About the smoking, I'm at a loss as to what to do to instill in my other son (5 years older than Paul) the desire to quit. My mother smoked, my ex-husband smoked, my best friend (a nurse) smoked and they all died from smoking related illnesses. I just know that for some people it must be REALLY hard to quit. Maybe the only thing to do is to buy a lot of health insurance and life insurance to take care of expenses.

Eileen

Your assumption is correct. However the excerpt that I did only dealt with his laser surgery. He then within a week had TWO MORE SURGERIES by his doctors each one of which left cancer behind. Finally he had his larynx out on the FOURTH surgery described as follows
[quote]He felt that since the cancer had recurred after receiving radiation, removal of the cancer using laser was not a good option in my case. He believed that since my cancer was behaving in a non-conventional manner, skipping areas that had been scarred after being eradiated, the best option for me now was to undergo the most aggressive kind of surgery. This entailed removing my retropharynx and the entire larynx, including the vocal cords. To reconstruct that area and rebuild an upper digestive tract, he would replace the removed parts by transplanting a flap of skin with its underlying tissues from my hand or thigh. I would no longer be able to breathe through my nose or mouth because he would redirect the trachea so that it would open in my neck, creating a tracheotomy.[/quote]
I'd certainly be depressed if that had happened to me
Charm

I'm not married to him at least not legally on paper, we have been together since 1/16/98. He has life insurance I think his mom took it out on him many years ago. I told him to ask her if she has it still or what but of course he has not and I'm not gonna ask her either(she's mean) lol so if not...we will cross that bridge IF we come to it. I don't really buy anything special I do keep yogurt for him, sherbert, ice cream, choco syrup, creamed soups in can( i am a big cook so I always am making a big ol pot of some kind of soup every sunday especially now)I have individual packets of different flavored instant potatoes, jars of different gravies. BUT he won't eat "maybe" once a day. He says he drinks his boost and ensure and that canned stuff and I have found out lies to his family also, but I'm not blind, I bought a 12 pack of vanilla boost at least 1 1/2 weeks ago! and there are still 6 left. He is an alchoholic and when he drinks his beer, he don't/won't eat. I have given up. He chose cigarettes and beer over his life, or he just thinks he is invinsible since he's also in remission for Non Hodgkins Lymphoma since 08 too plus now this. I'm at a loss for words and feelings. I'm just making myself stressed and I'm not going to do that anymore because of somebody who won't take care of himself. I have to do something maybe drastic and make him leave. Either that will help him or it won't and if it won't it won't be on my head that I failed to help him get better it will all be on him. His father died of Non Hodgkins Lymphoma after 13 yrs in remission. Ya think any of this would smack this guy upside the head and make him realize his days are numbered if he don't change his evil ways? Nope not him.

Suez - I know it can be so frustrating being a caregiver and you certainly have been a good one with all you do for Ron. It still has not been that long since the end of his treatment - so maybe things could still improve. When my son was recovering, he was not always "accurate" about his meds or his intake of liquids or food. That's when I started keeping a spreadsheet on meds and everything he ate or drank and posted a copy on the refrigerator for him to fill in. That way I could show him what was really happening (and show the Dr. too). Also, you need to think about and care for yourself, so that you can keep your stress level down and your happiness level up.

OK so yesterday, he wanted this Campbells Double Noodle Chicken noodle soup, I said Ron, this really has ALOT of noodles in it do you want it blended up, he said no. He tried to eat it ended up leaving all the noodles and drinking only the broth got mad, I asked him if he wanted something else he said he didn't know. We sat there for a bit next thing he gets up, says he's getting a beer! At 1030PM! I went to bed. Now on the 24th of Oct I bought a 12 pack of vanilla boost. Guess how many are left? 7! 11 days ago 12 bottles 7 left, ya he's not drinking them either, BEER. That is his answer and I'm tired of it. I can't do it anymore and to make my stress level less and make myself happy...he has to leave or he has to change how he wants to care for himself. If he don't want to live for me or himself than I can't have him in my home.

Suez, Im sorry you are having so much trouble with Ron. Maybe it would be good to start your own post under "coping", "caregivers" or "after treatment issues". That way your topic can get the attention it deserves and this thread can go back to the original poster's topic. Being a caregiver is not an easy job (I dont think I could do it). I wish you all the best in your daily struggles.

k will do sorry

Charm,
Thanks again for the excerpt. They really put him through the wringer. Wonder what hospital he was at?

I was lucky. My surgery went off without a hitch and I didn't need any flap so no arm or leg recovery to deal with. They were able to install my TEP at the time of the surgery so I was talking normally, albiet briefly, two weeks after surgery. I even sounded like me until the TEP became clogged a couple of weeks later(the speech therapist forgot to give em the brush to clean it). When he changed it the jackass put in a 6mm instead of the 8mm I had because he didn't have a 8mm available. This lowered my voice very low and even though I think it was only in for 2 weeks before I got the 8mm, it left me with this new voice permanently. So good surgery and totally imcompetent speech guy. He also forgot to give me the electrolarynx for after surgery so I couldn't talk at all for 2 weeks. Very frustrating. But all in all, my experience was much better than this poor doctor's. No wonder he was depressed.

Take care,
Eileen

Depression is one of the most difficult problems that a head and neck cancer has to face. The challenges of life in the shadow of cancer makes it even more difficult. The inability or difficulty to speak make it difficult to express emotions and can lead to isolation.

The social stigma associated with admitting it makes it difficult to reach and treat many individuals that need therapy. Surgical cure is not enough and there should be more emphasize about mental well being after surgery.

Depression is part of the normal mechanism of coping with adversity. There are several stages in the way that most people cope with a difficult new situation such as becoming a laryngectomee. The first stage is Denial and Isolation, than Anger, followed by Depression, and finally there is Acceptance.

Some people get �stuck� at a certain stage such as Depression, or Anger. It is important to move on and get to the final stage of acceptance and hope.

This is why professional help and understanding and help by family and friends are very important.

Itzhak Brook MD

http://dribrook.blogspot.com

Why am I depressed if I'm 3 years out and cancer "free" and getting along ok in this new norm? Thanks, Doc.
Patty 100

Suez, it sounds to me like he has a self pity case going. To have a great caregiver and make them miserable is beyond me. Let him know in a direct manner that unless he changes and becomes more thoughtful of you and all you do for him, that he might end up taking care of himself. Also, it could possibly be that he is crying for more help or out in pain. I'm just saying how things should be but we all are different. Tell Ron that I sure wish I had a caregiver to help me thru this mess. I say he has been lucky to have you in his corner.