My brother is in Houston this week for checkups. As soon as his main doctor walked in he noticed bumps on David's neck - I had not seen these. His wife said they started a few days ago. The doctor asked if he had more and David moved the strap around the trach to show 5-6 more. My sister, who is down there with them right now, said they looked like big red mosquito bites. The doctor was very straight with them and said there is a very strong possiblity this is cancer and did a biopsy. The results will be in Friday and I know I shouldn't worry until them, but the doc said the chance it was something else was very slight. I feel that, as a doctor who sees this in oral cancer patients, he is probably right. If it is cancer my brother has 2-3 months. What a blow. He had been doing well after surgery, but the last 4 weeks had lost noticable amounts of muscle mass and continued to be in deplitating pain. They are going ahead with the pain blocking shot tomorrow. He's doctor said it was worth trying anything if it could stop his pain for a little while and he could enjoy the time he has left. I'm trying to write this quickly, in between total sobbing breakdowns. Can anyone tell me what these bumps are? Do they mean cancer is somewhere else? They said his mouth still looks great, but he has a trach infection and LOTS of crusted junk and plugs in his throat. The doctor talked like, if these bumps are cancer, there is nothing we can do. Does anyone know anything about these bumps. Please let me know. I know it will do no good, but I always have to research everything to see if I can find even a glimmer of hope. I don't even know what these things are called.
You're help is greatly appreciated.
Tonya
Hi Tonya, I have copied and pasted an old post from a member of our forum that dealt with the same type of bumbs. I hope and pray for you and your brother. I have been worried about the continual pain he has been in and hope they can get it under control. I had the surgery your brother had and didn't suffer any of the pain he has been dealing with. Please let us know if there is anything any of us can do for you.
Author Topic: more cancer?
Christine
Platinum Member (100+ posts)
Member # 1061
posted February 24, 2004 06:53 PM
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Ok. I'm trying not to jump to conclusions, but today the doc gave me plenty of reasons to panic.
My husband, Scott, had more surgery Feb 21 (exactly one month after major cancer removal), which included a re-resection of bone in his hard palate area that had a positive margin and a skin graft to the incision area below his ear. The area that got a skin graft had opened up and gotten pretty nasty looking two weeks after the first surgery, so after it cleared up docs decided to do the skin graft since otherwise there would be a sizable sink-hole in his neck below the ear. Well, one day post-skin graft, these little bumps started appearing around the bolster covering the graft and nearby on my husband's jaw. By the next day (yesterday, Monday, Feb 23) the area had started looking weepy and the surrounding skin was pulling apart from the bolster. It looked just like it did the first time that caused it to pull apart (they then said it was a bacterial infection). I called the nurse and doc-on-call three times yesterday; ultimately, they both agreed that maybe my husband had developed a reaction to the bacitracin ointment I was instructed to keep the bolster moist with. But this morning the whole thing had deteriated at least 60% from just overnight, so we made the long drive to the doc's office for him to see it in person. He took one look at it, said it was not an allergic reaction, and ordered a biopsy--which was performed right then and there by a resident--because he thinks the bumps could be tumor. I asked how they could pop up so fast, and how could there be so many? And how could there be more cancer? He said it happens that way sometimes, but we have to wait for the lab results before we do anything more.
I could not bring myself to ask what this will mean about further treatments or more surgery (chemo and maybe rad are planned in a few weeks). I am hoping like crazy that he is wrong. Has anyone ever heard of this? The area I am talking about is the same area where the largest of my husband's tumors was removed; it is also just below the area that was radiated just a year ago.
So not only are we waiting for biopsy on the margin of bone removed from my husband's mouth, but also the "bump" they took today. Prayers, please!
Christine
Minniea,
Thank you for the information. I will try to find this conversation and see if anyone offered any answers or if there is follow up information from Christine. It doesn't look well for us, does it? I am trying so hard to be strong. David will be back from Houston tomorrow. I just hope and pray the nerve block they are doing today will ease his pain and allow him some quality time with his little girl this summer. I better go before my pain starts seeping through this message. It's just so WRONG. He's fought too many battles in his life to end here.
Tonya
Dear Tonya,
I am so sorry to hear about your brother. Life sure isn't fair sometimes is it? I will be saying my prayers for him. Just don't give up, keep fighting this damn disease! We are all concerned and here for you. Keep us updated OK?
Hugs,
Shelley
Dear Tonya
My prayers are with you both, I hope the postings on the forum give you the strengh to ask the questions that you dont want to ask.
Sunshine... love and hugs
Helen
Dear Tonya,
I will add David to my prayer list. I'll be pulling for him as well as many other members will be.
I hate this ungorgiving diaease!!!
Best Wishes, Danny Boy
Tonya, You're right this is just so WRONG. It's certainly a disease to hate with a passion, this disease. I am sending prayers that your brother will be out of pain and get to enjoy time with his daughter. And that you will find good ways for time with him too.
Nelie
Tonya,
I received a private message from a member of this board being very harsh and critical of my post to you and my offering you first hand knowledge on what you asked for knowledge about. I'm sorry if the knowledge on Scott scared you, it wasn't my intention.
Minnie
Minnie - I talked with Scott and to Christine before his death. He was a warm and caring person. While I am speculating, I believe that he would want anything related to his experience, even at this time after his death, to be used to help others. Christine is also someone that I believe wants good for others who follow in her husband's path. If Christine does see your post, my take is that it will not offend her. When she and I talked about the information that I had found for them about Scott's condition (which was not positive, and painfully reaffirmed that there were no medical options) they were grateful that I had been candid and honest with them. That particular phone call was painful for all involved.... and I remember the discomfort of it today like it was yesterday.
Yes it is always painful when we bring up the name of someone now gone. There are many that I was very close to and talked with regularly on the phone before their end. Reminding me of them is uncomfortable, particularly since in those conversations I saw myself in them so easily...that I could be exactly where they were at that point in time, and there was no rhyme nor reason why I was still around. But it was still important to help them during those last few days, to answer the questions that I could, to offer the inadequate sympathies for what was happening, though the best I could do, and try to help them through the process with caring but factual information, presented candidly. We must learn from the bad things that happen to people as well as the good, in the end both types of information help us all deal with our own inevitable path to a common end... Tomorrow or 20 years from now - via cancer or some other cause. I believe that your intention was to inform, and Tonya was candidly looking for both information and support, which you have offered her. I do not find anything insensitive about speaking of the conditions of one of our own who has left us too early. When it is my time, I hope that people find something useful in my posts that they can use after I am gone. I know that especially in the beginning, that references to me will disturb Ingrid and bring up fresh thoughts in her mind of a painful experience. But I also know that she understands that the greater good of spreading understanding and information is being served by such a posting. I think that whomever sent you the email hasn't considered all this, and when they do, they will find value in offering information to those in need of it, painful as it may be to remember those we loved and lost.
To Tonya, I do not know if your brother's condition is the same as Scott's, and you cannot read into the postings on these boards a medical answer. Because some bumps in one person mean one thing, none of those of us who have not seen the patient, who are not doctors, etc., can tell you exactly what this all means. These postings that contain "information" may not reflect your situation. Please keep that in mind and know that we all hope for the best possible outcome for both of you.
Minniea,
Please do not be sorry you referred me to Christine's messages. It was what I asked for. I want to know the situation, good or bad. Christine's posts to others even after Scott's death were insightful and compassionate.
I did a search and the first post I pulled up was when she had returned from scattering Scott's ashes at his fishing cabin. I did cry, but I've done a lot of this lately. My brother has been an outdoorsman, both hunting and fishing, since his youth. Until this disease took hold he spent more time outdoors than in. Scott's option is one I hope to have the strength to discuss with my brother. Christine also suggested having hospice come in as soon as possible. His doctors have suggested that as well. I have found some solice in the hope that they can ease this time for my family. From what I've heard from others who have had hospice in their home, they are wonderful. I need someone to help guide him and us through this time and make the last few weeks we have as good as possible and help David come to terms with what is happening. David said the last few weeks his little girl (who just turned 5) has been pulling away from him. I can't help but think she senses what is going on. Also, he has had a terrible infection in his trach and the smell permiates the house. In fact, he asked his doctor, "The smell is bad, isn't it? I can't smell or taste anything, but I can smell this." (Unfortunately they were unable to do the never injection because of the infection). This smell may be causing her to shy away as well - that and him having the trach and his not being able to talk to her or being strong enough to take her fishing and fourwheeling like he use to every weekend. I have hope that hospice can help us with this as well, and she can share this time with her Daddy.
So, again, Minniea, please don't second guess your decision to share that information with me. Yes, it was hard, but what part of this disease is not? What I found gave me hope that we can cope with what lies before us and that is what I desperately need right now, hope. Hope that his pain is eased. Hope that he can come to terms with this disease that is robbing him of his life and us of him. Hope that he finds peace.
Thank you,
Tonya
Very well said Tonya.
You and your family are in my thoughts and in my heart!
Cindy
Tonya,
I am so sorry it has come to this I, like Minnie, was concerned about the pain David has been experiencing. I felt it was a strong possibility that the cancer was not gone, but it so hard to tell that to someone. Especially before they are ready to hear it.
As for the smell, we experienced that also. The last couple weeks or so, I started burning strong aromatic candles constantly to try to combat it. Cinnamon ones seemed to work well.
It is very possible that David's daughter is sensing that things aren't right. Heather's daughter, who was 6 at the time, definitely had a sense of what was happening. She actually asked me, just a couple weeks before Heather died, when I thought her mom was going to die. Not if, but when. I believe her words were something like this - grandma, how many days do you think it will be before my mom dies? You can tell that she was very aware of the situation. If I may make a suggestion, be as truthful with your neice as you can. I think Cati handled her mother's death fairly well because we didn't lie to her about what to expect.
And definitely call hospice, as long as David agrees. We didn't have hospice in until near the end, because Heather didn't want them and I couldn't go against her wishes. Hopefully David will allow them in sooner because they are a great help. Please feel free to private message or email me directly if I can help.
Rosie
Tonya,
Like Rosie, I too have been worried that David's pain was caused by a reoccurence but didn't want to mention it and assumed the doctors were checking for it. Did the doctor say no more chemo?I am so saddened it has come to this and hope they get his pain under control so he can enjoy whatever time he has left with his family.
Take care,
Eileen
Tonya,
My thoughts are with you and David as you pass through whatever time you have left together. We all may be in your shoes one day. I hope David can be painfree and enjoy the time he has left.
All my best, Danny Boy
Tonya,
Your post brought me to tears, as I'm sure it did everyone else, so let your brother know that there are tears being shed for him all over this country.
32 years old and trying to wrap his mind around the fact that cancer is going to take his life much to early. I cannot even imagine the extent of his emotions right now, nor your own. What I feel I DO know is that you will be an invaluable source of strength for him, your love for your brother is so obvious.
I hate this disease and what it does to our families. I have said many times that the patient has the easy job, all we have to do is die. The road for our families is long and sad after we leave.
Tonya, I wish there was more we could do for you. I also hope that the time David has left will be pain free and that he finds a place where he can accept what is happening and find peace.
Minnie
Dear Tonya, I wish I could do something to make it better. You and David are in my thoughts and prayers. God Bless, Carol
Dear Tonya, You, David and his family have been in my thoughts since I read your post. I am so very sad that a man of 32 has such a prognosis. I send you love from Helen
Tonya, Reach deep, find your strength and help your family get through this.Help David celebrate the life he has lived. Amy
Thank you all. I have just returned from Houston. My sister, who is down there, called Thursday and said the doctor said he might not make it through the night, or he might have a week, so my family packed up and went. His main doctor said he looked great, but my sister kept taking him to the pain clinic until finally a receptionist, seeing him holding his head and the pain he was in, said, "I'm getting him a doctor now." It seems his main doctor had not "had time" to look at David's cat scans from last month. Everything looked okay inside so the doc wasn't worried about it. The pain doctor that saw him pulled it right up on the computer and said the cancer was growing up his throat and had been absorbed into the tissue of his skin (this test was done on April 21) and immideately put David in the pallitive care unit and began trying to relieve his pain. While I am thankful for the care he is receiving at this top-notch facility, if the doctor would have just taken 10 seconds to look at the results of last month's test we could have saved David the horrible pain he has experienced this past month and he would have a little more time to prepare -though knowing David he would have waited until the last minute anyway. It's probably easier on him this way. The counselors have been in and talked to his wife and daughter. It's difficult for his wife, but the little girl is holding up pretty well. My sister's two little girls are there with them and they keep the little one occupied and bring smiles to David's day with hugs and kisses for their "Uncle Boo". I will keep you posted as I can.
My husband, son and I just returned from Houston last night (They thought they would be sending him home today, but now that's been delayed). He is looking well but has been unable to sleep for three days. (They said the steriods and other medication that have him on is inhibiting sleep). They are hoping to have him stablized enough to send home Tuesday. Fortunately my brother has no problem with hospice coming in and his doctor ha refused to release him until that is in place anyway. I feel they will be a valuable asset. David wrote me a note while I was there that said, "Well, this kind of snuck up on us. I need to write a will." (Something I've been trying to get him to do since last June.) Those few words give me the hope that he is coming to terms with what is happening. We are having friends, and those just wanting to express their wishes, send emails to my sister's email address. She checks it several times a day and prints out messages to take to him. If anyone would like to do that the address is
[email protected]Thank you for your caring, your thoughts and prayers and the sharing of your time to express those things to me and offer assistance and guidance.
Bless you all,
Tonya
I am really sorry Tonya. Whatever time you and your family have together with your brother, I hope is pain free, filled with love and lasts longer than anyone dreamed it would.
By all means make sure he does the will ASAP. Here is a link you might find helpful for legal forms and end of life issues.
familycaregiversonline I would not advise you to rely on an online form as his final will, however any legal will is probably better than no will at all.
Mark,
Thank you so much for the valuable information. He is still having terrible headaches but I told my sister to make sure to contact the pain doctors tomorrow and let them know - of course it is a holiday and the place seems to shut down at those times. We will definately fill his days with love and rejoice in the time we have shared with him. I love the way JAM put it... "Help David celebrate the life he has lived". Thank you all for your support.
Tonya
If he owns property he should have an attorney set up a living trust to avoid probate and tax issues. Trusts always include a will and durable power of attorney, usually with advanced directives as well. I had a paralegal do mine and it was about $400.00.
I am heartbroken to hear the latest news,
Tonya,
Email me if you need an attorney to help. I have a friend here in Houston. She is good and I am sure I can get her to help. When Harry was first dx he had no will either and she drew up all of the papers for us and then called him everyday until he went and signed them. If it weren't for her persistance he would still be without it.
If you need or want my help just ask and it is all yours. I will help in any way I can.
As for holidays... I would call the doc today. Pain takes no holiday and he should not suffer just because of some stupid calendar. That is why doctors are ON CALL! I would call today and every moment I needed to no matter the time or date in order to make him as comfortable as possible.
Best to you and your family!!!
Cindy
Hi Tonya,
Bless your brother, he has been through so much. I'm happy for you, your family, and him that you feel he is accepting what is going to happen. You are traveling a section of this cancer journey that all of us hope to avoid but know that we are with you while you go through it.
Please take Cindy's advice and call the doctors, in fact call them approx. every 5 minutes until they get his pain under control. He has had these headaches since right after surgery and enough is enough. He shouldn't have to be in pain on top of everything else he is expected to deal with right now. Does he have a patient advocate at the hospital? Maybe they can help.
Know that your brother and you are on the minds of many today.
Minnie
Thanks to everyone, again. They increased his pain meds last night and he slept for the first time in three days. I am so glad because he needs to be rested for his trip home, which maybe tomorrow or Wednesday. My sister said he is looking good and was able to walk around today. We are looking forward to having him home and enjoying every second we have left.
Thank you all for the blessings you are sending our way.
Tonya
David arrived home about midnight last night. Thank you for all your prayers, thoughts and wishes that have aided his safe arrival home. I will keep in touch on his progress as I can. Right now I'm going to enjoy a beautiful day with him and his family.
Tonya
Tonya
I'm so glad you have David home, please add my prayers to the others, may your God guide you well.
Sunshine...love and hugs
Helen
32 years is not very long, but hopefully there are good and precious memories in each one of those years. That is what we need to celebrate. Thinking about your family with empathy. Amy
Thank you Amy. I can honestly say that my brother has lived each day of his 32 years to the fullest. My husband has comforted me many times by reminding me that David has lived more than most people in their 60's. He just packed it into 32 years. When he was first diagnosed and I wept for the time he would miss with his little one, my husband said, "David has already spent more time with Adley (his little girl) than most fathers spend with their children in a lifetime," and I know it's true. Every minute he had off from work was spent with her, taking her fishing, four wheeling, anything that was outside and they could do together. I am so grateful for all these things, though the shortness of his life still hurts deep in my soul. Our memories are good and they are precious and we will share them repeatedly with his little girl in the years to come so she will know the great love he had for her, the love she is probably too young to remember.
We are and will continue to celebrate his life.
Thanks,
Tonya
Hi Tonya,
When I was in my darkest part of the "after treatment" depression I had one certain thought that haunted me. I have a 6 year old grandaughter, Shelby, who is very close to me. For whatever reason she has always seemed to need me more then her sister who is a year older. She was 4 at the time I finished radiation and I would watch her and realize that if I died she would never remember me. She was simply to young and I was aware that I had no memories of my own from when I was 4. That bothered me more then anything. Does David have the strength to maybe make her a short simple video? I made build a bears for the two grandaughters, with a voice box inside that wished them love and good night from nana, in my own voice. It used to take my breath away to think that all those years of fiercely loving Shelby would not be remembered. But one thing comforted me and that was the realization that somewhere in her was a part of her that was shaped by my actions, by my love for her. She might not remember me but she had a part of herself that was only possible because of my interaction with her. I do hope that David will take comfort in the fact that he spent the most formative years with his daughter, he was an active part of shaping who she is and will be.
I think of you and your brother every day and pray for a miracle.
Take care Tonya,
Minnie
Unfortunetly David cannot talk, due to the surgery removing his tongue. That seems to have been the hardest thing for his little girl, loosing that communication with him. He can write to her, though, and I have wanted to suggest he write things for her to read in the future, but I know that will be one of the hardest things he has ever done, and I just haven't been able to mention it yet. I will try to find the strength to do that.
Tonya
Tonya, does he have the strength to use a keyboard?
Yes, he can use a keyboard and he even has a keyboard that will verbally say what you type - he just hasn't adjusted to it yet and seems uninterested in it since the latest diagnosis. Hospice is trying to regulate his pain which is enabling him to do more. His best friend from childhood came to visit today and took him to a ranch where they spend many summers hunting and fishing. They stayed out there for six hours. (This was amazing since he hasn't been able to get around much lately) I am so happy. This really seems to have lifted David's spirit and I bet he will have no trouble sleeping tonight. This was a good day for all of us.
Tonya
Dear Tonya,
So nice to hear David was able to get out for 6 hours with his best friend. Sounds like a man I would like to know.
Hoping Hospice can get his pain under control.
He is lucky to have you as one of his caregivers. Your love for him shines through your postings.
Love Ya, Danny Boy