I don't get my first Covid shot until this week so I'm not going. This first appointment is a test where the doctor will look down his throat and surrounding areas. I'll brief DH on the questions before he goes, makes sure he gives me permission to talk to the doctor, and I'm sure DS1 & wife will be helping out too, once they find out.

Roarah, I've done those breathing exercises and they really do work.

One stress right now which has been killing me is that DS2 is in a dual diagnosis rehab in Florida for 30 days. Bipolar Disorder, pot, and some alcohol, and a lot of bad moods. :) I'm his "person" and let me tell you, it's hard. I didn't even know what a mental illness was until DS2 was in college when it hit during his jr. year. DH's father had it. And I'm the only person in the whole wide world who cares. I'm completely angry at DS1 and DH for more or less turning their back on him but they don't know how I angry I am. Oakley the peace keeper!

It takes a toll on me because no matter how old he is, (39) he's my baby and didn't deserve to be born with such a cruel illness where people have no empathy or sympathy. Now I'm getting really mad so I'll stop. :)

Half of the utility room floor is clean!

I, too, join the chorus of sorrow that you and hubby are facing this challenge. I can't add anything specifically about his cancer, but just know that there are SO MANY people who have thrived after a cancer diagnosis and treatment. There is no reason to believe your husband can't be one of those.

Because he's an attorney, I would assume all is in place, but just be sure you have powers of attorney in place for you to be able to deal with medical decisions if needed, or to be allowed to converse with the doctors and then financial POA also for all the financial areas that need to be dealt with (if he does that now), should he just not feel up to doing things while he gets treatment.

Hoping for the very best best outcome.

eta: I didn't see your post about your son when I posted. What a difficult thing for him to be going through and extra hard for you as his sole family support. Hopefully, his treatment will provide some relief for you both.

I haven’t read all of the responses, but can trust that you’ve gotten a lot of great advise. When my husband was diagnosed with his Multiple Myeloma in 2012, the first thing the doctor said was to avoid the internet and it was good advise. Especially since you don’t have much information yet.

As for advocating and being there to help him through this, most insurance and/or oncology providers now have case managers who can offer as much support as you need with questions, referrals, scheduling appts, insurance issues and so on. Some will even go to the appts with you. It’s a lot for one person to manage on their own, so while diagnosis is pending, I would urge you to contact the insurance company to see what they offer. Even if you choose to not to use it, it’s helpful to know it’s there if you need it.

Cancer is scary and this is a club that no one deserves to be in, but treatments have improved by leaps and bounds over recent years. They continue to do so daily. I know it’s hard, but try not to panic and over think things right now. Your DH is going to need to feel your strength and know you’re ok. I’m sorry Oak, I really hope he’ll be ok.

Oakley, I'm so very sorry. You're both stronger than you know. Will keep you both in my prayers.

Oakley, I'm so sorry to hear this news, and that of the others.

I'm glad your RN DIL is right next door. Perhaps she can accompany him to the appts and ask all the right questions.

Wishing for the best possible outcome.

Oakley, I am very sorry that you and your husband are going through this journey. Cancer is not a death sentence, even with 3 comorbidities. I have had cancer, my husband is one of three childhood survivors of lymphatic leukemia (1962 in an experimental trial.) My dearest and most special friend has a very rare form of lymphoma and several comorbidities. My friend will probably die at a ripe old age and not from cancer. Many cancers are often highly treatable now. You may not be cured, but you will live, just like we do with many other diseases.

As for your son, it is hard to be the one who deals with the illness. It is physically, emotionally, and health draining. Your sons and husband can not deal, but you have chosen to do so. A lifelong challenge that rises and falls without warning is hard for any parent to deal with. Right now your son is in a good place. He is being cared for and you can not change what he decides to do. You can take care of yourself. Your anxiety is palpable. I hope I am not overstepping, but consider speaking with someone. You don't have to meet anyone in person, but there are people who are able to help you. Anxiety is a plague in this country and it is the cause for many bad outcomes and wasted lives. There is real help that can support you and then in turn you can better support all those you love.

My thoughts are with you.

So sorry to hear about your son. I totally understand those who decide to give up on addicts, and do not blame them. OTOH, if you are able, your support of him is invaluable because you are right, there is a shortage of empathy and sympathy.

Do take care of yourself!

Hugs Oakley! I am so very sorry about your husband and so very glad that at this time it is infinitely treatable. I know more people than I ever imagined knowing who have had cancer and who have a clean bill of health years later.

With regards to your son again I'm so sorry. Please remember compassion for yourself and for him. Find a phrase or a mantra that you can use to remind yourself that this is no one's fault.

Best of luck with both situations.

If the pandemic prevents you from going to the appointment with your husband, your DH can put you on speaker phone with the doctor’s permission. It is very difficult for a patient to process all the “medical speak” during an appointment, ask follow up questions, etc. If you have signed permission to speak to your DH’s primary physician, you could ask him why the ENT to bring yourself up to speed prior to the next appointment. All of these unknowns makes your imagination/anxiety run on overdrive. Hugs.

Oakley----- you and your family are in my thoughts and prayers........

I'm sorry you have to deal with all of this. I know how worried your are but try not to let those fears overwhelm you. Take one step at time. As hcbm mentioned it could be helpful to speak with someone about your anxiety. You've been offered many suggestions and I'm not going to add anything new to the list. I'd just like to reassure you as many others have already done - that you need to spare yourself from assuming that "this is his death sentence" especially since you don't know what the diagnosis is. Treatment options have increased exponentially in recent years. So just breathe deeply and take one step at a time. You know we're all thinking of you and your family and praying for a good outcome.

Oakley, please be sure to take of yourself too! Trying to take care of your husband and son, both facing serious health issues, is incredibly draining and as the saying goes you can't pour from an empty cup.

Olychick beat me to the punch regarding having your legal and medical framework solidly in place NOW. You may have already done it but you need these documents even more because your husband clearly has some ongoing cognitive impairment and based on the familial pattern of mental illness you describe it's strongly likely that is affecting him as well.

As the medical liaison for my parents with dementia, I've learned that it's best never to assume/presume they will or can accurately report or describe anything to, with or from their medical practitioners. You probably already have his health care proxy/living will/power of attorney but you almost certainly will need those. Based on your input now and previously your husband simply doesn't have capacity to understand much less report information back to you. I've found it helps to frame it in my own mind that they simply don't speak the language rather than getting upset because they *won't* tell you things.

Last but not least, speaking from experience with a beloved sibling who has battled the demons of addiction and mental illness, the one thing that was for me the most difficult but most important was to viscerally incorporate this truth: YOU CANNOT FIX THIS. You can love, you can be the listener, you can be the resource. But you can't make anyone change and you are mom not therapist and not case manager.

Wishing you strength and grace to meet these enormous struggles.

Back to reiterate the compassion others have mentioned. Sometimes, in these situations, all the excellent advice gets internalized as "shoulds" in our mind. That mindset can also increase our anxiety. There will be days when things go as they "should" and others when they don't even come close. Every type of day is reality and that's all right. So, yes, plenty of compassion. Be kind to yourself. You're human. Imperfect with the best of intentions and doing your best.

As for the nitty gritty of financial affairs and the like: don't assume. Shoemaker's children going barefoot is a saying for a reason.

Cancer on scalp related to the neck? Depends on type. The most common (basal cell) rarely spreads. That said, having one type of cancer does increase the likelihood of a second. But that's all. Doesn't make either a death sentence.

Agree with the advice that Googling isn't wise. The information and stats on official sites is outdated. Copying and bolding's maire_cate's sentence because it's so true: "Treatment options have increased exponentially in recent years." Best to follow the advice of the experts in the field.

My very best wishes, Oakley.

Oakley, perhaps it would be wise to talk to your sons, at least your older son and his wife. Perhaps one of them could go to the dr. with your husband this week. Someone NEEDS to be with him at the appointment (if allowed). Write down questions you have and give those to whoever accompanies him. I have had basal cell skin cancer, it can spread, but that is rare. However squamous cell can spread to the lymph nodes. Do you know what kind your husband had? I agree with others here who have mentioned the treatment available now for cancer(s). My MIL is a 7 year survivor of Lymphoma. Her brother has had it for 20 years (at least) and periodically will go through treatment. There is hope.

Oakley, do you think it is possible to attend your DH's appointment virtually? That way you can hear what the doctor says and ask any questions you may have. Just a thought.

Regarding your son. I remember when you first spoke about him here. I've been here since 2007 so it goes back 13 years. My heart broke for you then and it breaks for you now. I know you feel alone but I bet there are many here who can relate to your situation so you don't need to be alone. You've got so much going on right now (an understatement), maybe when you have a chance, you can write a separate post about DH2. Being able to talk about it will help and I know you will get the support you need.

Oakley, I was so sorry to read about your husbands health problems and I can sympathize as my husband has had similar issues and a similar personality. One thing that has helped us is, he keeps a journal it comes in very handy when you need to look back or wonder when this or that appointment happened and what was discussed. He also keeps tract of all phone calls, who he spoke to and what was discussed. Making copies of his blood work and doing some research. Three years ago when he as first diagnosed he didnt seem to be that interested, more like ” what will be, will be”. You can handle anything that comes your way the hard part is the not knowing.

Our children know about a blood disorder he has, but more recently he has had more diagnosis that he is not willing to share, I’m holding off as long as we can, why upset our children until they need to know..((Thinking of you and you husband)).

Prayers for you both Oakley!!!

I don't have any words of wisdom but I am sending peaceful vibes your way. Don't forget to take care of yourself.

Sending positive thoughts to you and your family for strength and healing.

I'm a realist and I would second what Rorah said, people in my family tend to not ask very relevant questions and don't make decisions based on all the facts, more on emotion. One shouldn't discount emotion but should factor it in dispassionately as possible. So come prepared. On the flip side, there is no reason to assume the worst, there are many ways to treat cancer, including treating cancer in people with co-morbidities. Take Jimmy Carter for example, he has managed to get treatment for cancer and survive at a relatively old age. I'm sure it was no picnic. Just try and take it one day at a time. At this point I would comfort myself with the thought that knowing is better than not, and once a full diagnosis has been found, you will develop a treatment plan that has a possibility of being effective. Most cancers have a survival rate with the odds on your side, generally. So no sense worrying about the worst because at this point you don't know what that will be. However, as the journey gets farther along, I highly suggest a support group of some kind . . .

Oakley, I'm sorry to hear about your husband. A few years ago my boyfriend had throat cancer from HPV. He had it in his tonsil and he also spent a few weeks ignoring it, then a few weeks to make a doctor appointment, then a wrong diagnosis, then a few weeks to see a specialist and then a few weeks more to start treatment. Nothing was removed surgically but he had to go through several months of radiation and chemo. He got a feeding tube halfway through because he couldn't eat or drink and that was what was going to kill him before the cancer or treatment would. The feeding tube was really not a big deal and his strength improved once he could get nourishment. Now he is fine and cancer-free but it was a lot to live through at the time. It sounds like your husband has other health issues, but cancer isn't always a death sentence these days. I wish you the best and my heart is with you and your family.

Allison, it is possible that COVID restrictions will prevent that right now. Doctor's offices and hospitals, at least those where I live, are being very strict and not allowing anyone other than the patient to come to appointments or procedures. I was unable to do so with my husband a couple of months ago.

Yes, under normal circumstances patients are asked to go into a clinic by themselves but the exception is when it involves something serious like cancer, surgery or the like. It‘s crucial for someone with this type of diagnosis to have someone with them who can take notes, ask questions, offer support and so on, especially during the period of staging, when he’s going over treatment options and during those treatments. Often times, the patient is so overwhelmed, scared or will not even mention (or remember) symptoms he/she may be experiencing. There was one time when my husband had a reaction to a medication that he didn’t even think to mention. Doctors know this and actually want you there. The exception is a hospital setting which for obvious reasons follow a completely different protocol than stand alone clinics do.

Oakley, after having a chance to read through some of your posts, I would urge you to speak with your husband about joining him when he goes to his appts. His response to it all is very similar to how my husband’s was, it’s not uncommon. The fix for us was to ensure that ALL his doctors were authorizated (in writing) to discuss his care with me at any time. Another thing we did was to keep a signed HIPAA authorization in our file just in case I needed to get records for something.

Oh Oakley, I am so sorry to hear this. Having cared for both parents through multiple cancer episodes, I do have some thoughts to share:

a) add to your cleaning routine some meal prep...put some meals in individual servings in the freezer for those nights when you are to exhausted to cook.

b) get a notebook and take it with you to *every* dr. apptmt and take notes with dates. It will become impossible to remember everything each doctor said or when. Write down symptoms or other issues he's experiencing as well so you can inform doc at next appmt. Keep track of medications, doses, and reactions.

c) make sure your healthcare power of attorney is up to date and if new docs need it, have it ready to give to them or be sure your name is on the form for who they can share his info with you, talk to you on the phone, leave messages on your phone, etc. HIPPA can be a total pain!

d) *do not* borrow trouble. Understand that worrying and fretting about future unknowns only frazzles you and accomplishes nothing. Rather do what you can to receive *all* information, good and bad, with equanimity. You are about to take a roller coaster ride. For every bit of bad news, there will be some good, and for every bit of good news, there will be some bad. If you let those bits of info swing you from elation to depression, it will only wear you out and make it more difficult to do what you need to. Rather seek the calm, the mid ground and do what you can to keep your emotions on an even keel. It will help you be the best caregiver you can be.

e) as you get more into it, it is well worthwhile to seek out top notch cancer treatment centers where they can get you access to clinical trials or latest treatments. You not only will receive access to the best, but the overall level of care for the entire patient, IME, is better...with them, it's not just all about the disease.

f) it's too early now, but as you get into the weeds of treatment, you may be looking for help as you will be making decisions that you will feel you are ill-equipped to handle. I found Cancer Grace to be so helpful for me. It's a nonprofit forum where oncologists from all around the country volunteer their time to answer patients' questions. Those Q&As are available to search as well so you can learn from others' experiences as well as get answers from those qualified to give them.

g) I can't recommend strongly enough that you *do* get the vaccine. It's really critical at this time that you too don't become ill. The vaccine will help keep you healthy, especially as you go in out of hospitals/dr offices/waiting rooms/labs/testing facilities etc. If you know you are vaccinated (80-85% effective 2 weeks after just the first shot) then that will be once less worry on your plate. One of the biggest mistakes caregivers make is not taking sufficient care for themselves. Don't let yourself fall into that one. You need to be as healthy as possible to have the strength to face into what life is throwing your way at this time.

Sending you my best thoughts of courage, strength, healing and solace in this most difficult time.

Tartan, I didn't know that a person could get another type of cancer if they had one before. That's something I need to look up.

Once DS and DIL find out, with their personalities they'll both make sure everything you all said above will be carried out. DIL volunteered to get Covid shots for as many people as she could. She's on top of things.

Cran, your husband not willing to share his new diagnosis is the same reason DH is keeping mum right now. I might talk to him to see if he can get DS to go with him this week, but knowing DH, he won't need anybody. The doctor didn't tell him to bring someone with him which they always do if need be.

Running, you wrote, "because your husband clearly has some ongoing cognitive impairment and based on the familial pattern of mental illness you describe it's strongly likely that is affecting him as well."

WTH? I'm sorry but he's not mentally ill nor does he have cognitive impairment. Why would you say such a thing? The "familial pattern of mental illness" is bipolar disorder." He's always been the type not to make a big deal when he gets sick.

I'm not going to talk to him about all the legal and financial things that may have to be done until after his first appointment. I'm sure he's still processing it, no need to freak him out at the moment.

The addiction DS2 has was caused by his bipolar disorder before he was diagnosed. They may drink, do drugs, smoke pot, what have you, just to feel normal. Unbeknownst to any of us, alcohol and pot will cause mania and psychosis if you have bipolar disorder. Pot really does calm him and it does make him feel normal, but it's about 10 hours later when pot induced mania begins.

DS2 & I laugh when his first symptom appeared in college because we both remember it well. He called me one day and asked if his uncle was his dad. :)

He's the one I called my "Gap" kid because he dressed like the guys in those old Gap commercials. As "crazy" as he can get, he always makes sure he's clean and looks nice. lol

I miss him. He was living with us when DH got heart failure and he took the bull by the horns and talked to the doctors, nurses, and anyone else. I hate mental illness and I'm fuming at God for giving this disorder to humans, because no one cares.

Sorry you are having such a tough time right now Oakley.

One more thing, very tough to do, but it can be so helpful. I strongly recommend Being Mortal by Atul Giwande. I think it should be a reference book for anyone facing into potential end of life decisions. At the end of the book, he lists 4 key questions that need to be asked. Quality of life is defined differently for each patient and doing the best for the patient is doing what's best for them as *they* define it...not how drs define it or family defines it or anyone else. I think it's easy as the decider for someone else to put them through more than they might choose for themselves only because we want them to have the absolute best chance possible, we don't want them to leave us, and we don't want to be responsible in any way for doing anything that might end their life too soon...but often those treatment options entail a great deal of pain and suffering for only a minimal improvement or chance that their life may be extended, without regard for what that quality of life might be.

By answering these questions, it helps keep that choice in the hands of the patient and makes being a caregiver much easier as these issues have already been discussed.

So sorry to hear of your DH's diagnosis and your family's struggles. My thoughts are with you!

"Tartan, I didn't know that a person could get another type of cancer if they had one before. That's something I need to look up."

With all due respect, Oakley, no you don't need to look it up. It's just one of those medical likelihoods. Not particularly helpful to know more about it than that, really. Besides, odds on the Internet are general, not individual. Just because the odds are X, doesn't mean an individual will experience X. It's easy to forget that when we're in Internet research mode. Individuals aren't statistics. I know this well.

As for the financial and legal affairs conversation, yes, to be had after the official diagnosis and treatment plan. Didn't think to specify that, sorry. I think many of us stressed the importance of this conversation and planning because we know how essential it is and how easy it can be for many of us to play ostrich or assume things. Really, it's a conversation that should be had periodically throughout a partnership but the minutiae of daily life takes over for so many of us that we forget to check in on these important matters.

((((Oaklley)))) I am so very sorry you and your family are going through this. I would be all over the internet as well. It is hard not knowing what you are dealing with. That is probably one of the hardest parts. Just being in the dark. I wish I had some words of wisdom or anything I could say but please know I will be thinking of you guys and hope you get to the bottom of it as quickly as possible. Much love!

Amy

"knowing DH, he won't need anybody. The doctor didn't tell him to bring someone with him which they always do if need be" Oakley, I'm sorry to disagree, but this is so, so wrong. I don't know how to put this, but you cannot rely on the doctors and trust them to always put your husband's best needs forward. You, as his partner, can be his best advocate. I would never let a cancer patient attend dr. visits on their own. My sister or I went to every one of my mom's appointments. My husband and I did the same with my MIL. I'm sorry to say it, but YOU have to be the one to try to keep the clear head, to take notes, to ask questions, etc.

As for the financial/legal affairs, I'm sure with your husband a lawyer that you have your wills, POA, Medical POA, etc. taken care of - as all of us should. Lukki makes a good recommendation with the HIPPA form.

I know it's alot to take in right now. Try to take it one step at a time. Make a plan, write things down (the journal mentioned earlier is a great idea!).

I, too, remember your younger son and the things he went through. I am sorry to hear he is having troubles. Maybe your older son can help more with his brother to where you can focus on your husband, for the time being.

4Heidesign, thank you for sharing your story. My youngest brother is a stage IV SCC survivor for 20 years now, and even back then they were very confident about his treatment.

I took DH this week for a colonoscopy, and I could check him in and then I had to go wait in the car. The doctor called me in the car. Then they called when they were ready to bring him out for me to pull up to the entrance. We joked that it was like going to the vet curbside LOL. Huge relief; all clear and 10 years.

And we just got back from his first vaccination!

So sorry to read that news, Oakley .

I can offer nothing more than sympathy and well wishes for the best possible outcome.

Gosh, Oakley, I'm so sorry to read this. Wishing your husband and family the best as you learn more about what's going on and the treatment he'll have. I, too, would want to be at his appointments. What he learns will probably be a lot for one person to absorb all by himself. Hugs.

4Heidesign, thank you so much for sharing your story with us. You absolutely did make me feel better. You gave me the answer I was looking for. Knowing your story and how you're skiing again gives me hope. Thank you!

So they can tell what type of cancer it is by the biopsy? I suspected it since DH is going to the ENT. DH was on speaker phone & I overheard what the doctor said. Nothing about throat cancer but they need to find out if it came from another area of the body or in the area where the mass is.

I think the doctor knew but didn't want to say anything until it's confirmed.

To everybody!

Because my osteoarthritis in my wrist and also my trigger thumb (there's such a thing) I need to lay off the typing per doctor's orders. I have to put my hand back in the brace and leave it there.

I'll be checking in on my iPad but I don't type on it.

Thank you all so much for your helpful and loving advice. I don't feel quite so alone like I did yesterday.

Not sure the exact day of DH's appointment but I'll try to check in when I find something out. I need a vacation from all the cleaning I did. :)

And never fear, DS1, DIL and I will be on top of things, I can assure you.

Again, thank you!

Oakley just to let you know I speak into my phone and it writes everything down. Not sure if that's an option for you but just wanted to say it's a possibility perhaps for you.

Still sending good thoughts and big hugs to you and your DH and son.

Oakley, I have been reluctant to respond. I remember the fear I had being diagnosed with stage 3 breast cancer in 2008. My life and my body have totally changed in indescribable ways but I was fortunate to have my husband at my side. Trust your doctors, one foot in front of the other, one day at a time, love overcomes fear. Fall down on your knees and pray. Just don't let the fear overcome you. I'm in tears typing this but I know exactly what you are feeling.

seagrass

Oakley, I sent you a message, but left out an important detail. Actually, I assumed it was a given. Go with him!! Sit in on his Appointments and take notes, With all the physicians we saw, there was no question that I would be there at every appointment. I never felt unwelcome.... quite the contrary.

"So they can tell what type of cancer it is by the biopsy?"

Yes. There are different types of biopsies and sometimes a biopsy is inconclusive in which case they may request a second biopsy or a scan like an MRI or a PET. Each case is different. (I'm in Canada, btw. In case it makes a difference.)

Once there's a diagnosis, it's not a bad idea to get a second opinion. (I read all the replies but don't recall if that was mentioned.)

Take care of yourself, Oakley.

Still thinking about you, Oakley. My DH was right by my side and he was able to listen and ask questions and do research while I was paralyzed by fear. Be strong for your own self, too. I hope we can give you support and courage even though we are strangers on the internet.

seagrass

Oakley, I don’t see my message. I will retype if it doesnt show up soon.

No advice but hugs to you, and I will be praying for you and your husband.

Wishing the best for you and your husband. You have received sage advice here. {{{{{{Oakley}}}}}}}

Here’s the thrust of my message: Once you’re told where the cancer is, and told he needs surgery, find a specialist at a large teaching hospital. My DH’ s cancer was in a similar area. The specialist we saw in our large metropolitan area said he was familiar with the type my DH had. I asked how many surgeries he’d done for this . Well, last year, two. I quickly began my research and chose a top rated man at UCLA......who averaged hundreds per year. He was over an hour away, but so worth any inconvenience. The research included reaching out to all my various docs and dentists, along with calling radiologists and asking for names. US News and WORLD REPORTS was a source that confirmed our choice of surgeons. Some large hospitals have very reasonable guest quarters for patients and families. UCLA’s was wonderful.. This was 6 years ago. All is well. I’m not sure if my message will ever show up, but you can try messaging me if I can be of any help. Deep breath, this can turn out fine!

Oakley Martinca is spot on. We were lucky to have a world reknown surgeon an hour from home. We started will a local surgeon who did the biopsy and made a mess of my husband. Poor follow up, took THREE WEEKS of begging for results. Once we switched to his second surgeon and his oncologist it was a world of difference. The doctors we worked with included me by phone every step of the way.

Oakley, I’ve been thinking of you all the time. I hope you (and of course DH) are doing ok. ❤️

Oakley, all the best to you and your DH.
I strongly second Martinca’s advice to get treatment at a large research hospital, and a surgeon and oncologist with maximal expertise. You want to be at a large research center/ teaching hospital with the most current protocols and most experienced practitioners.
Also, do not hesitate to get a second opinion, and perhaps a third. No reputable physician will object to this.

I definitely agree with Martinca advice. My genius surgeon who did all my reconstructive surgery was at Mount Sinai, a 6 hour drive from my home. My ENT referred me to this surgeon because he was one of the innovators of the particular surgery that was performed on me. I fear that I would not have done so well without his experience, and that of the four other surgeons who assisted him for my procedures.

Thank you everyone for your kind words and concern. We're on top of things, so don't worry. We recenltly lost a friend at MD Anderson so what I've learned is all cancer is a crap shoot. DH has a team of good doctors so we'll take it day by day.

Thinking of you, Oakley, and prayers for your husband. Is there any news, yet?