Happy Sunday everyone -

Thank you all for the helpful suggestions. : ). I think talking to another survivor his age who has been there & done that would be very helpful. It is hard to see any light at the end of the tunnel at the moment and especially would be helpful for him to see someone who is living the "new" normal.

Well, as for the update - we had Steve's first post op follow up visit at Moffitt this past Friday. First we met with speech therapy to do the swallow test. He could not swallow water or applesauce but with thickener added he could swallow water the consistency of necture. This was a big surprise and reality check for him. He has not tried swallowing since his surgery - we have all asked him to. I think it stund him with what he could not do. The speech therapist said that is a good start.

After we met with his surgical oncologists RN - They remove the staples from his neck - which is healing nicely. Then went to his wrist and they removed the stitches that kept on the dressing around his skin graph on his wrist. This was the first time we got to see his skin graph site - Gosh I was not expecting that. It looks more like a burn then anything healing well but one area where the graph did not take over a tendon - it was exposed. Not unless usual they said but it will just take longer to heal. Then they removed the stitches and dressing from his leg. Which looks good. His mouth is healing really well. Still swollen but his Dr was happy with the range and strength with back to front motion it was already showing.

Next we found out the result from his pathology report from his surgery. They removed 20 nodes from his right side and 22 from the left. On the right side 2 nodes were positive and on the left 1 node was positive. Obviously not the news we wanted to hear. His Dr said it is especially concerning that he had positive nodes on the right side - since this was the side he had radiation on earlier this year and she said cancer really should not have shown up there. His primary tumor was 3.5 cm on the anterior two-thirds single focus. They said it was a PT2. So they staged him at stage 3. The other very very hard news to take ( and I only now know after research why the Dr looked so concerned is that there is perineural invasion as well. The Dr stated that she still considers it curable but this for sure made it more aggressive then she originally thought. Gosh it feels like being kicked while already down. Because of these findings they are going to start him on 8 weeks of daily radiation with 3 rounds of chemo in between. I do not know the exact radiation or chemo they will do yet. The Dr said this will give him the best chance to fully make sure the surgery got it all and that it has less of a chance of coming back in the future but that she is going to watch him very closely for years. I am just devastated. I am such a positive person usually but after this news and knowing the hell he has been through and will go through it is hard. I give all of you so much credit. We will keep fighting - no giving up here. Just a slap in the face with reality.

Sorry that there were affected nodes and perineural invasion. The doctor thinks its curable though so you can hang onto that.

He's going to find the radiation and chemo hard so you will need lots of support. You refer it to a journey so it might help you to see this as another twist in the road but one that you can navigate with your amazing love and determination. Think of the rads and chemo as effective fighting agents against any microscopic cells remaining. They hurt but they get the job done.

Most of us have been through it and needed lots of help at the time - emotional and practical: family, friends, professionals, Cancer Society. All assistance is useful.

Much love
Maureen

Sorry to hear about the positive nodes. I guess now you have some time to wait until the radiation and chemo treatments will begin.

Glad to hear that he was able to eat at least something with the swallow test. The first couple of times I tried to swallow something, I had a similar experience. Drinking plain water or something with very little viscosity, I didn't have much control over where it was going in my mouth, and it would dribble down my chin. But thicken it up a bit, and I was able to swallow it. After this, I started on watered down cream of wheat, soups, applesauce, pudding, and then up from there. The technique seems a bit foreign and is more akin to swallowing something from a straw, or trying to "vacuum" drool from your lips than what we are used to.

Also glad to hear that the flap site on the wrist looks good. Mine had also split open, kindof along the spot where the artery was removed. It took plenty of triple antibiotic ointment and gauze pad wrappings over a few weeks until it healed. Even one year post surgery, I can still see where the staples held the new skin in place. And yes, it looks more like a burn than anything else.

Keep on fighting! Sounds like you have a good plan of attack in place.

Sorry about the need for further treatment. When John was told that his cancer had metastasized, I was very upset. Then one day, while driving home, I was thinking about how that I had one day less with him, but in the next moment, it occurred to me that even if he wasn't sick, we would always have one day less -- that's the nature of life. This thought has helped me through some rather rough times and has helped me feel determined to sustain a positive attitude. I hope this helps.

HI there... I dropped the morphine within a day. It gave me nightmares and I had a restless sleep and woke up feeling blurry and unrested. Is he in pain? If he's not try seeing how long he can go until he begins to get uncomfortable. With his type of surgery I'd be willing to bet he's more numb than in pain. Though everyone is different. Also depending on how much food and fluids he is taking in the morphine will effect him differently (kinda like taking drugs on an empty stomach)

Drooling is par for the course and depending on how you sleep you can choke on it. Tell him to sleep on his bad side with a cloth under his head. That way the drool is less likely to trigger his choking response and the drool will pool and run out onto the cloth. Everyone has to figure out what works best for them but this may help. I have chronic post nasal drip from rads when I sleep I still favor my bad side that way I can't "feel" it during the night.

as for the stitch it depends on the surgeon. My surgeon removed 30 - 50 % of my tongue. he also removed the floor of my mouth on that side and rebuilt it with the skin right up to the gum line. Because of this I actually have a fully formed tongue that is very adaptive and moves well. In fact my speech is completely clear except for when I am tire then I have a slight lisp.
Some drs actually tether the tongue in place (why? - is beyond me) If this is meant to be permanent, once everything is over and he is feeling better maybe they can adjust it.

Hugs and you're amazing.

Danielle,

I feel like I am going through some of this with him. My free flap surgery was 2/10 and I had a very hard time tolerating the trach. They took it out after the first 3 days and switched me down to the smallest size before transitioning me to 'the button'. I would press on this when I wanted to speak. Otherwise it was neck-fart city! My teach took a long time to close - I was on steroids when I went into surgery (huge mistake in hindsight). Almost 3 weeks. Once I was off the steroids it closed up within 3 days.

With regard to pain meds, I had much the same experience as Vanpaddler - I didn't need a lot of pain meds after returning home, have only used Tylenol and occasionally the hydrocodone (2x but it leaves me with a headache). The one thing they gave me in the hospital that I sorely wish I had now is Ativan - it is an anti-anxiety drug. Calmed me down, helped me relax and sleep. Helped me so much more than the morphine. I actually stopped the morphine 3 days before I left the hospital.

NG vs. PEG: if he's OK with the NG now I guess go with it. However, I agreed to have mine placed while I was in the hospital because I learned I had to go on for rads & chemo, and because I literally felt like a cow with a ring through my nose. Hated it - I was always pulling on it by accident. Plus, not sure I would ever have left the house to go shopping if I still had it. Too hard to explain. The PEG is easy to use, very straight forward. Mine got infected due to the steroids I was on, but most people have no problem with it. Plus I can go out in public and no one is the wiser. No idea what his preference will be.

Continued good healing and prayers to you, your boyfriend and his Mom. I am learning this is a process and we just have to put one foot in front of the other and get through it

Heather

Hi all,

Sorry not to update in a while life has been life - but I have read all of the comments and take all the info anytime we have a dr appointment that I have learned from here. Heather nice to meet you, I wish it was not in this way.

So a bit of a update and where we stand now -

Shortly after my last update Steve pulled his feeding tube out by accident while he slept. He was happy that when it came out he could actually swallow water and liquids and his speech did improve. However, he could not intake enough to keep the weight on and in the three days it took to get him in to get a G tube he lost 5 lbs ( he is down to 135). After the G-tube was put in he gained so much more strength and his spirits brightened. He could even taste the fruit in the flavor water I gave him. He has yet to try anything of substance other then water and juice. It is annoying how little he has tried to be honest.

His mood after finding out he would need chemo and radiation was horrible - complete depression yet he does not want to see a phys and even stopped taking his Lexapro until he re-started on Saturday after a stern talking from myself and a dr.

Friday was his birthday - poor guy not only had an appointment at Moffitt to check on his surgical areas, he got up that morning and overnight his neck had ballooned up it was not even swollen the night before. Thank god we had that appointment. The Dr had to lance his neck and a ton of liquid and puss came out. The Dr was concerned why he got an infection this long in the surgical recovery process. The Dr also ordered to have a RN come to the house each day to clean and re-pack the wound and he is on anti-biotics. What a birthday. This took his - I am finally recovering mood right back down to hopelessness.

I am terrified at how he is acting - extremely depressed - stays in bed and watches movies and only leaves to get boost, meds and bathroom. Has not wanted to shower, shave or anything - totally not like him at all, little to no contact with friends and in general blah about everything. I am calling Moffitt after work to see what we can do - since he keeps refusing treatment for his mental heath. I understand the depression but I cannot see going into radiation and chemo in this state. The only good update is that they upped his boost from 300 to the 500 cal version.

Also, and I could really use some help on this - he is having horrible mucus - he is on musinex and he throws up at times and says he is constantly nauseas' has anyone experienced this? My thought is that he is on - anti-biotics, pain relief - usually liquid Tylenol but at times morphine, musinex and only taking in water and boost so I think his body is sick from so many meds and no substance food wise. Also since they lanced his neck he is not taking in anything via mouth and hardly talking - he said the throat is too swollen.

Wish I have a more upbeat update. I have to admit this is really taking its toll on me and our relationship. I am not used to this person he is acting like, and it feels like there is no appreciation for all that I do. I am trying to suck it up but it has become very hard.

Danielle

This is very difficult for you, Danielle. I felt the opposite to you boyfriend in that I had one of my sons travel from the UK to look after me for 6 weeks. I felt I had to be brave for his sake so that his stay with me was as pleasant as I could make it. That was a pretty good motivation. I also had a couple of big meltdowns in hospital where I wept for hours. I wonder if males find it harder to rinse their emotions in tears.

The other thing is that Boost, which I assume is a formula like our Fortisip, should sustain him. I've met a woman who lives on it. She's full of energy. I really don't think you need solid food to recover from surgery or be healthy in general.

I wonder if your boyfriend is taking you for granted because you are so loving and caring. Maybe if you told him what you have expressed here, he would wake up to himself. I know that depression is not something that the sufferer can necessarily shake himself out of. Nevertheless, it's possible that he could summon up a more positive attitude if he was kind of shocked into it.

The infection sounds ghastly. What a horrible thing to go through.

Has he talked to any survivors? Can the hospital link you to one?

You are such a good person to nurse your boyfriend through this as well as going to work each day. I wish you all the best.

You can not make him do anything even though it is clear he needs to reach out and get his head straight before he starts down the really bumpy road.

You can only do so much and you need to look in the mirror and take a hard look and reflect on how you are surviving.

You can reach out for yourself too and please keep that at the front of your thoughts if the toll on you continues to grow.

It is very difficult but more than a few folks have been in your situation and needed to focus on ensuring their own way forward, knowing they are giving as much as the patient will accept.

Hoping for the best for you both

Danielle, sorry about what you and your boyfriend are going through. It really isn't easy. I have had the support of a therapist for the last two years and the most valuable lesson I have learned is "to indulge him." Your boyfriend has a lot on his plate and it is extremely hard not to be angry, self-conscious (hence not wanting to see his friends, etc), and sad. He's probably feeling that he is the most unlucky person in the world right now. That makes it very hard for him to do what he should do for his own health, much as you may push. It is easier not to get angry with him when you tell yourself "I should indulge him and give him more space right now." You will do whatever you are doing for him now no matter what, but telling yourself that you are indulging him will make you less resentful of his lack of effort.

As for the G-tube, up until this past October, John was living on Neutron and he was fine. He got all the essential nutrients from it and was able to maintain his weight despite all the treatments he was getting. If you boyfriend enjoys a cup of coffee or tea, there's no reason why he can't have a few sips of these everyday. He can also have some ice cream or even jello if he wants. It helps to give a sense of normalcy.

John always says I worry too much and indeed, I do the worrying for both of us. But I make it a point that he just needs to focus on his treatment and he knows that and appreciates it.

Good luck to the both of you. I have you on my mind.