In holding pattern. . . venting

kaygee1 · Posted: Mon Mar 09, 2009 9:48 am Post subject: In holding pattern. . . venting

Hi! Thank you for these forums!

Until my dad’s death in October 2007 from Alzheimer’s, he and my Mom had been living with me and my husband and daughter for about 9 years. During that period, he and I shared the same family doctor. Upon his death, I began seeing another primary care physician. Anyway, for a long time, I was exhibiting symptoms of Alzheimers at work and later at home. Significant personality changes were taking place, depression, and a loss of efficiency at work that led to my dismissal from my job, headaches, memory loss, especially about driving directions, getting lost, etc. I’d leave my physician’s office with a pharmacopeia of anti depressant samples to try, sinus headache medications to try, and brochures for family counselors. Apparently it’s not uncommon for a relative and primary care giver for an Alzheimer’s patient to imagine the kind of symptoms I’d been having. In November 2008, my Mom asked me to mail a letter for her. I’d been lost so often trying to drive, I elected to walk to the mailbox just 2 blocks from my home. I could see it from my front door! Hours later, I found myself walking as if I were drunk along the railroad tracks some distance from my subdivision, tripping and falling all the way. I came to my senses, realized I was badly bruised, scraped, and bug bitten and found my way home.

I didn’t recognize my husband when he came home from work, (thought he was my late father) nor did I know who my 17 year old daughter was. I picked a fight with my 80 year old wheelchair bound mother. My husband called our family doctor, who sent me to the office next door for a CAT that evening. After the CAT, the receptionist came running out to our car to inform us we needed to see our physician immediately. There we were told that I had three “very large, oddly shaped tumors in my brain. We were told to stop at our pharmacy and pick up and take steroids immediately. From there, we were to go to a downtown medical center where our family doctor had already been in consultation with the same neuro surgical group who had been treating my husband for spine problems. The MRI was waiting for me, I was popped into Neuro intensive care, and the next afternoon, one “very large” Grade IV Glioma Blastoma Multi Formae was “more than 95% removed.” I was discharged in time for Thanksgiving. Once pathology results were final, every weekday radiation treatments were begun on December 23. On Christmas eve, I began taking Temodar every evening. After surgery, I felt better than I had in years! This disease had a name and it wasn’t Alzheimer’s and I was thinking clearly, and able to read without difficulty and with the ability to discuss what I’d read!

The Sunday after my final radiation treatment and my last Temodar, I had a mild seizure in church. (late February, early March 209) Back to the cancer center emergency room. MRI was inconclusive because the swelling was so bad, there wasn’t a clear view of what appeared to be tumor growth and three new nodules. I’m back on steroids to diminish the swelling so a better look will be available at the end of March and we can make decisions. I was put back on the Temodar for a week and am now trying to wade through all the conflicting information I’ve been given by my oncologists and by my new exploration on the web.
Now what? My cognitive skills and concentration are somewhat diminished so I can’t really understand what is being offered and what is involved. Sorry for the LONG introduction, but I need to figure out how to get out of my denial of this thing, and how to learn where I can go and who I can trust. My surgeon and oncology team have a great reputation and a lot of experience with glioma, but I’m worried about being in this holding pattern to wait for new information about my condition.

Thanks for letting me vent any and all advice would be welcome.
_________________
Karen
(trying to swim out of de Nile (not the river in Egypt) but denial of a diganosis of GBMF IV.

artaran

I'm very sorry to hear about your GBM IV. I don't want to frighten you but it's a very serious situation if it is already returning. Are you being treated at a major brain tumor center? If not, I recommend you get to one as soon as possible. How far are you from Duke? They have some of the best doctors and most cutting edge treatment in the nation.

I wish you the best,

Arleen

justAdad · Regular Joined: 21 Aug 2007 Posts: 17

Hi Karen,
With the amount of swelling you have...it is basically the same as having been in a long boxing match. You will suffer some effects until the steroids bring this swelling back into control. It will pass.

If I understand the timing correctly, you just finished your radiation and Temodar treatments. It is standard to wait 4-6 weeks's after the last radiation treatment to take another MRI. This is because MRI's are mostly inconclusive so quickly after the radiation. Therefore, don't put too much into the MRI results you just had. Your doctors, however, would rather err on the side of being overly cautious, therefore taking more Temodar seems like a good idea.

Once your swelling is reduced, and a bit more time has passed since your radiation, an MRI will be much more useful in determining the rest of your treatment plan.

Good luck to you!

artaran

I agree with justadded.

It is difficult to read the MRI's with all the swelling, and that swelling could also be the casue of your siezure.

I hope I didn't make you too concerned. It's just that with such a difficult and complex disease, it is helpful to make sure you're getting second opinions and checking into the very latest research and treatments, if you have the time, energy and capability.

Take care,

Arleen

kaygee1

just a Dad:

Thanks! That's what my docs said, but when I was actively on the Temodar and doing radiation, I felt in contol and now I'm very impatient and am ready to DO something. But it will be 3 -4 weeks before that will be possible. I was warned when I did the MRI early b/c of the unexpected seizure, that it was probably too early to get reliable results but, I've never been a patient patient. . .

Arleen: as grads and former employees of the Gothic Wonderland that is Duke it was my husband's and my first thought (only about 8 hours away) when we were told I needed surgery. But I needed IMMEDIATE stabilization and surgery and there was really no time to get things going in Durham. My docs at Hollings are in close contact with Duke and have assured me that as they learn of more at Duke (and other centers elsewhere) that can be done, they'll apprise me of it.

I think that my frustration lies in the fact that I have no medical background and I've got PAGES of chemo choices and combinations to read through with dwindling cognitive capacity (tho that may change as the steroids really kick in). And then the wait. How do others cope with all the waiting? How to sift through all the data and make the difficult and painful choices, especially when the results of the next MRI could change all the options?

How did you all who have been through this for so long cope with the waiting and the overload of information at the beginning of your journey?
Please forgive this newbie for venting and complaining. Thanks!
_________________
Karen
(trying to swim out of de Nile (not the river in Egypt) but denial of a diganosis of GBMF IV.

brainman

Hi Karen. First, I am very sorry about your cancer. As you can see in my signature block, I have years of experience with this.

I am an information junky, so when I found out that I had a glioma, I went to the medical library at my hospital and read all that I could. That was in the early days of the internet but I made use of what information I could find on it too. I also became involved in a cancer support group. Through all of this and with a lot of help from family and friends, I made it Smile

.

Waiting was and is very hard. Fortunately, I did not have to wait long the first time. However, in 2005 when my cancer recurred, I had to wait for months before the doctors decided what to do next. I was calling their office weekly.

No need to apologize for venting. I am glad you found us to be a safe place for you to do so.

You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

kaygee1

[quote="brainman"]Hi Karen. First, I am very sorry about your cancer. As you can see in my signature block, I have years of experience with this.

I am an information junky, so when I found out that I had a glioma, I went to the medical library at my hospital and read all that I could. That was in the early days of the internet but I made use of what information I could find on it too. I also became involved in a cancer support group. Through all of this and with a lot of help from family and friends, I made it Smile

.

Waiting was and is very hard. Fortunately, I did not have to wait long the first time. However, in 2005 when my cancer recurred, I had to wait for months before the doctors decided what to do next. I was calling their office weekly.

No need to apologize for venting. I am glad you found us to be a safe place for you to do so.

You are in my thoughts and prayers.[/quote]

Jim,

Thank you. Having read through your links, I'm inspired to search out a way to use this experience in a positive way to help others, as you obviously have done so effectively.

I've taken the liberty of adding your name and the names of those who've posted to this thread to my family's growing daily evening prayer list of valient glioma sufferers and warriors.

Karen
_________________
Karen
(trying to swim out of de Nile (not the river in Egypt) but denial of a diganosis of GBMF IV.

artaran

Dealing with the waiting is very difficult. I agree with the others that it helps to inform yourself as much as you can.

It might be helpful to get some books and read other people's journeys.

In our case it is our 25 year old son son who has cancer and there were times I thought I would not get through the day. Strangely too it seemed as if significant information came to us on Friday afternoon. Information we could not nothing about until Monday morning, so I had to pull my hair out all weekend. For example, I found out the biopsy results were a grade three and not a grade two and he would now need chemo and radiation, but we couldn't get more details until Monday. We also went to pick up his chemo on a Friday afternoon only to discover that the insurance company was refusing to cover it and the bill was $10, 000 dollars!! There was no one I could call to resolve the problem until Monday.

The waiting is agonizing--breathe, read, try to get out of the house. And don't be too hard on yourself for feeling awful.

Take care,

Arleen

gliderman

Hello, Karen,

Do you have any friends who are nurses or nurse-practitioners? You are trying to cope with information about chemicals and treatments which is most often confusing, conflicting, and poorly explained -- and I was a biochemist years ago.

I do think your physician should be taking the lead in explaining your situation and options to you. If not, can you find a medical professional to whom you can relate? Underneath their white coats and knowing demeanor they DO put their pants on one leg at a time, just like the rest of us.

My brother has glioblastoma 4 and he's being treated at one of the premier research institutions in the country -- but I am disturbed by the apparent failure to inform him of alternate or "unproven" treatments, especially diet related.

As you have found out, the survival time for aggressive brain cancers is not so great, and as long as a decent quality of life can be maintained, IMHO everything should be tried, even if it's not '"proven".

After all, if you try Dr. Budwig's regime of low fat cottage cheese and flax oil, it won't cost much. and "it couldn't hurt"

Do avoid quacks or 'specialists' offering expensive 'secret' treatments to exploit desperate cancer sufferers.

My heart is with you,

Rich
_________________
Question Authority: Yes We Can

kaygee1

[quote="justAdad"]Hi Karen,
With the amount of swelling you have...it is basically the same as having been in a long boxing match. You will suffer some effects until the steroids bring this swelling back into control. It will pass.

If I understand the timing correctly, you just finished your radiation and Temodar treatments. It is standard to wait 4-6 weeks's after the last radiation treatment to take another MRI. This is because MRI's are mostly inconclusive so quickly after the radiation. Therefore, don't put too much into the MRI results you just had. Your doctors, however, would rather err on the side of being overly cautious, therefore taking more Temodar seems like a good idea.

Once your swelling is reduced, and a bit more time has passed since your radiation, an MRI will be much more useful in determining the rest of your treatment plan.

Good luck to you![/quote]

Very Happy

Just a Dad:

you really know how to call 'em!
MRI a couple of days ago was much clearer. Most of the suspected new growth looked more like dead tumor tissue. Swelling is way down. Back on Temodar (stronger this time) to try to kill anything left over. Another 6 weeks of waiting ahead, but this time, it looks like things are going well!

Thanks! Karen
_________________
Karen
(trying to swim out of de Nile (not the river in Egypt) but denial of a diganosis of GBMF IV.

kaygee1

[quote="gliderman"]Hello, Karen,

Do you have any friends who are nurses or nurse-practitioners? You are trying to cope with information about chemicals and treatments which is most often confusing, conflicting, and poorly explained -- and I was a biochemist years ago.

I do think your physician should be taking the lead in explaining your situation and options to you. If not, can you find a medical professional to whom you can relate? Underneath their white coats and knowing demeanor they DO put their pants on one leg at a time, just like the rest of us.

Do avoid quacks or 'specialists' offering expensive 'secret' treatments to exploit desperate cancer sufferers.

My heart is with you,

Rich[/quote]

Thanks, Rich, I made the mistake of signing up for the cancer information program offered by my "friends" at my insurance company. Their nurse called me regularly, questioned my doc's decisions, and generally made me more and more uneasy. . .

I think that, perhaps, a nurse practioner on my team may lurk here b/c within 24 hours of my original post, she phoned me just to ask how I was handling things . . . got an e-mail from my doc inviting questions. Got good answers and input each time.

20+ years ago, I idid a stint in the pathology department of a major teaching hospital as maternity leave replacement for the main receptionist. I became only too well aware of how persistent uneasy and worried callers can hold up getting their own results (not to mention everyone elese's that day) by bullying support staff into pulling a doc out of the lab or a meeting to answer a call from a worried patient who wants an instant response. Now that I know how responsive and supportive the folks are here e-mail is wonderful doc can post a quickie answer to a question when available; can have a support person contact me, if necessary, et.

I'm learning how to handle waiting better now. I just need to go to trusted sources and to relax, trusting my team and their response.

Karen
_________________
Karen
(trying to swim out of de Nile (not the river in Egypt) but denial of a diganosis of GBMF IV.

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others