I have moved this for ginny7777 so that it is seen

ginny7777
Member
Member # 1814

posted January 22, 2005 08:56 AM
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I did go to the oncologist I found that is a friend of my brother-in-law. He is launching a
full battle plan. I am to go next thursday for a
complete body pet scan, then back to him and also
to a radiologist all before the surgery. He confirmed that the tumor is growing back, but would not reschedule the tongue surgery until we have the results of the pet scan, so I still have a lot of unanswered questions as to what is to come. He was VERY interested to find out that I have always had a higher number of mouth ulcers for unexplained reasons. Is this common among non-tobacco users with oral cancers? I'd like to sell my business & retire, but cannot find a buyer so I am trying to find a replacement for the next 4 months, does that sound about right as a recoup time? Thanks
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Posts: 3 | From: alabama | Registered: Jan 2005 | IP: Logged

Ginny,

If I read your earlier posts correctly, this oncologist is not at a major cancer center. If that is the case, I would re-emphasize the point that I believe it's critical for you to be examined by a head and neck cancer team at a major cancer center, even if it involves a longer drive. In light of your prior history with this disease, it's extremely important to get the most effective (and aggressive) combination of resources pulled together in one place to attack it this time.

As far as projecting a recovery time, 4 months sounds unrealistically short. If it turns out that you need both surgery and radiation, 4 months doesn't get you much past the basic treatment time. Different people have somewhat varying experiences with recovery, but a rule of thumb where radiation is involved is one month of recovery for each week of treatment. Some of us managed to work at least part-time during treatment, but others haven't been able to work at all, so I would suggest that you not set demands on your time that you may not be able to meet.

Cathy

ginny7777, as Cathy noted, please go to a major cancer center, even if the oncologist is a family member or close friend. You need a team to attack this disease, not just one doctor. It must be attacked in a coordinated way with chemo, radiation, surgery and whatever else is needed. I also agree with four months being unrealistic. I was one of those who worked through my treatment with the exception of a few days here and there for chemo, surgery, etc. However, I was not exactly 100%. My treatment started in November of 2003 and ended in May of 2004 (rad ended February, 2004, which is the hardest of the treatments in my case) and I wasn't 100% at work until this month, really. That's almost a year from the end of rad. So I wouldn't count on 4 months. However, the most important thing I can say is get to a major cancer center, regardless of how far or long you have to travel. Most of them have very low cost or free hospitality arrangements. You just have to ask. And I wouldn't worry about hurting other people's feelings, after all it is your life. Will pray for you.

Hey Ginny,
Where in Alabama do you live? We now live in Birmingham. Dan was treated at the U of MD when we lived in MD. His oncologist talked very highly of UAB here in Birmingham and Dan is starting to see an oral surgeon there. What type of business do you have? If there is anything we can do to help, please let me know. It would be great if you lived close...
Take care and God bless,
Debbie

When I first got diagnosed at the beginning of this month, I thought of a curse word. Somewhere along the brevity of "Sorry, we can't do anything for you here and are refering you onto a Cancer Center." I remember asking the doc, uh... I fully intended to get back into the workplace this month after the holidays are over. He just shook his head and told me not to make any plans like that for a year.

It's going to be tough enough just dealing with my mother chores and taking care of myself.

I never would have thought that I'd be looking at going back to work as a reward, but guess that's the way I'm going to look at it.

Beat it and get on... 2005 is gonna be the year of the battle

Debbie,
I am a patient of Dr. xxxxxx at the xxxxxxx of Alabama. He's in with xxxx & they have both been thru Dental School and Medical School. For an oncologist I picked xxxxxxxx who keeps in touch with the major cancer centers. My sister tells me that the NIH lists UAB as a major center in oral cancer research. I just think it's odd that if I had left it to Dr. xxxxx, I'd be almost 2 months from finding the cancer to finally being sent to an oncologist. Dr. xxxxxxx is mapping out a whole battle plan (like getting a radiologist involved) before any more surgery is done. To answer what I do, I am a pharmacist who owns a speciality pharmacy (no walk-ins)mostly working in the mental health field. My sister is my partner & between the 2 of us there are 2 disabled young adults (1 has 3 kids) and elderly parents - my mom just broke her back and is mute & starting Altzheimers. I also work a part time job & have been working 12-13 hour days to do all the pharmacy work & I still have a 15 yr old boy at home. I have probably ignored the lump in my mouth because there has been no time to even notice it was there over 6 weeks unhealed. I am desparately trying to "lighten" my load so I can have time to fight this cancer & my family is rallying around the idea that Ginny isn't responsible to make meals for everybody & feed the cows, etc. I have a great network of church family & friends that have already pitched in for me, but my family will have it much harder going & I feel bad that I'm not there for them as much. I feel that I have to listen to what God's trying to teach me & learn his lessons. As long as He is glorified, I'll be ok. This waiting between appointments not knowing anything new to tell folks that ask is a drag.
Thank you all for your answers & prayers.
Ginny

(This posting was edited to take out doctors names and addresses which we do not generally allow on the message board. Communicating this kind of information should happen privately between individuals via email or the message system of the board which is completely private. BH/OCF)

Ginny, as a small business owner I want to make a few suggestions. First, I was able to work light duty after the surgical recovery (radical neck dissection, tonsillectomy) which was about 2 weeks. I was also able to work light duty during my radiation treatments and was able to drive as well. Fatigue and pain especially the last weeks of radiation were a problem. I did not have chemo and that will make things worse. You might be able to do your work although I wouldn't recommend it. The mental stress and pain medications might make it a liability for you.
I have a suggestion for you that may sound contrary. Is there a competing company in the area that you might ask to take over for the period of your treatments and recovery? This may not work but I heard of a company that came to the aid of their competition in this time of need. Naturally you might need some legal guidance, but maybe it is worth consideration. (they might also be perfect buyers after time as well)

I truly needed to off load all stress. I really believe it complicates healing. This is a time for you to focus on you. Everything else will take care of itself. If necessary, seek legal advice about the business and what to do in case you cannot return to work. Get your personal legal papers up to date at the same time.

lastly, see the social security office right now. You may qualify for disability with SSDI. I did not do this and have great regrets about it (I never even thought about it). There are time issues before you can qualify. Check into it NOW don't wait and don't be too proud. If you had your own disability coverage use it too.

thanks for the suggestions, I never thought about seeing if I qualify for a disability. Maybe when my pet scan comes back and they discover I'm truly empty headed I'll qualify, ha ha. Ya'll don't realize what a blessing you are to me right now. I'm getting lots of love from all directions. I did find a buyer for my part of my business, but I sure hate leaving my partner/sister with the mess of my leaving...it's one of those jobs when there will never be a right time & I'm following your advice about making this ME time. Unbelieveably my husband is about making this my time too. My 15 year old son will not even discuss my cancer, I figure he's still in a denial stage & will come around. He's spending his Saturday with good old Mom before I'm too sick from surgery. My 21 year old off a college doesn't have a clue other that that I do have a cancer diagnosis...she'll be suprised next time she sees me.

Ginny,

It sounds like you are a bit relieved to have removed some of the stress in your life even though you have created some stress in regards to your sister. I hope the net effect is less stress for you. Be patient with the 15 year old. He will deal with this on his time and in his way. I had a 15 year old when this started and we moved his brother in with us, too (14 year old). I think with the cancer alone it would have been a rough road but getting the brothers back together has been a tougher road. They are still trying to learn to cohabitate and I think they have pretty much forgot about the cancer thing, which is good.

I am wishing you nothing but the best and most positive thoughts for your upcoming treatment(s).

Ed