What a roller coaster.... chemo before surgery....

[hotcoffee]

Well today was quite a roller coaster.... I was scheduled for a PreOp meeting at Johns Hopkins next Tuesday.... so I asked the nurse, the oncology nurse.... and even went on my cancer site to make sure this made sense..... ...... then this morning I got a call from Johns Hopkins this morning .... my surgery to take the mass out of my belly is scheduled for the 29th of December....
I asked them.... Hey I'm doing chemo next week and the next week you are doing surgery?????? That doesn't seem right.... I mean my white blood count is already low.... and another round of chemo isn't going to help it.... She says... I'll have to ask the nurse and get back to you....

So I go to my boss and tell him my surgery is set for Dec 29th and I'll be out of work for at least 6 weeks.... and maybe as long as 2 months or more.... so he was distraught but took it pretty good..... they have to get someone hired full time to take my place.... and they have one week during the holidays to do that?????

Then I took matters into my own hands.... I called the oncologist office and told them I'm cancelling the chemo for next week.... done deal.... that way I'll have at least 2 weeks in between chemo and surgery.....

Then I got a call back from Johns Hopkins rescheduling the surgery for January 26th.... The preop will be the 22nd of January.... I'll be six weeks out of chemo so I'll be able to heal better....

Then I get a call from the oncologist office.... the nurse and the doctor will have to discuss this and call me tomorrow.... good for them.... I'm still not doing the chemo....

I'm sorry.... it ticks me and hubby off that now I will have to go another month in pain.... and I can't trust the doctor's office to get things right.... I've never dealt with terminal cancer before so I don't know what I'm doing but at least I won't be walking in for surgery with no white cells to help me heal and protect me from infection.... I am furious!!!!

 

[vraiblonde]

I would tell you to mind your doctors but I believe most people know their own bodies better than some doctor and are capable of making their own health care decisions.

 

[Bann]

I think Vrai is correct in that most people know their own bodies better than the docs. You have the right to refuse the chemo, it's your body. Do what you feel is best. And do follow up with that doctor's office to get answers to the questions you have about the chemo and the surgery.

 

[hotcoffee]

I WAS minding my doctor.... but I have two doctors.... and apparently one is not working with the plan.

Remember.... I'm on pain killers.... I take enough pain killers in a day to lay the average joe out.... So one doctor tells me he can take out the painful tumor in my belly at the end of December.... The other doctor keeps telling me I have to stay on the chemo.... even tho he's been talking to the surgeon.

I have been asking the doctor every time.... when do I stop the chemo so I can have the surgery.... he kept telling me I would be fine....

When they took out a big section of my colon back last year.... the doctor in DC said no chemo.... and this local doc wanted me to take chemo....

I figured [since the cancer has spread now] that the doctor telling me I should take chemo was right and I should have listened to him..... but now he's cost me another month of pain.....

How is a pain ridden drug popping patient supposed to know who is right? I mean should my doctor be someone I can trust?



[I've been trying not to mention pain or drugs because I didn't want some crook to try to break in my house.... note... if the crook is reading this... I don't keep them at home]

 

[Larry Gude]

Most people do NOT know their own bodies. Most people know when something is wrong but, that's akin to knowing you have a plumbing problem. You may know something is wrong but, most people don't know what to do about it our how to fix it. Doctors know a lot more about our bodies than we do but, they don't know everything and, frankly, don't and can't care about your body any more than a plumber does your home. Not really.

Hotcoffee is doing the right thing raising hell about this. If they're not focusing enough, YOU have to demand they do or try a new plumber. That's no guarantee of success but, it's your body, your home, and they're only going to care about it as much as you demand. Don't like 'em? Don't feel right? #### 'em. It's on them to prove themselves to you, to earn your trust.

Raise hell, sez I!

 

[hotcoffee]

Most people do NOT know their own bodies. Most people know when something is wrong but, that's akin to knowing you have a plumbing problem. You may know something is wrong but, most people don't know what to do about it our how to fix it. Doctors know a lot more about our bodies than we do but, they don't know everything and, frankly, don't and can't care about your body any more than a plumber does your home. Not really.

Hotcoffee is doing the right thing raising hell about this. If they're not focusing enough, YOU have to demand they do or try a new plumber. That's no guarantee of success but, it's your body, your home, and they're only going to care about it as much as you demand. Don't like 'em? Don't feel right? #### 'em. It's on them to prove themselves to you, to earn your trust.

Raise hell, sez I!

Thanks.... I appreciate that.... And since I raised hell with the oncologist office today.... the oncologist said he was going to write in my file that I was going against his orders. Then apparently someone from his office called the surgeon's office.... the surgeon's office called and tried to smooth things over.... and I started to cry.....

"please... please... please don't make me go through chemo next week. I'm hurting every single day.... and chemo just makes it so much worse..." The surgeon's office took my pleading to heart.... Surgery is moved up to the 12th and I don't have to go through the chemo next week.

Merry Christmas!

 

[Larry Gude]

Thanks.... I appreciate that.... And since I raised hell with the oncologist office today.... the oncologist said he was going to write in my file that I was going against his orders. Then apparently someone from his office called the surgeon's office.... the surgeon's office called and tried to smooth things over.... and I started to cry.....

"please... please... please don't make me go through chemo next week. I'm hurting every single day.... and chemo just makes it so much worse..." The surgeon's office took my pleading to heart.... Surgery is moved up to the 12th and I don't have to go through the chemo next week.

Merry Christmas!

Good for you. it's worth keeping in mind that a lot of what they do is not so much to treat YOU the best way possible but to treat you in a general sense so that you can be used as a data point which could be helpful to someone down the road but, not so much for you. That's not to paint them as bad but, it is how they can look at treatments and see trends and results. They don't have all the answers and the more you argue for yourself, well, even if it may not be best for how they sincerely think you should be treated, that you're fighting is good for your spirit. They don't KNOW specifics. They have a really good idea but, so do you.

Cancer sucks.

 

[Dakota]

I feel so bad for anyone going down this road because the treatments are so barbaric. Hotcoffee, you are in my thoughts and prayers.

 

[Lilypad]

hotcoffee, God knows I wish things were better; stick to your guns unlessen and until.
Does your husband take an active role in advocating-just asking?!
It is beyond frustrating to have surgery dates jockeyed around-been there.
Love you.

 

[hotcoffee]

hotcoffee, God knows I wish things were better; stick to your guns unlessen and until.
Does your husband take an active role in advocating-just asking?!
It is beyond frustrating to have surgery dates jockeyed around-been there.
Love you.

My husband has been by my side all the way. He is so awesome!

I think he would have given the doc a bloody nose and a black eye if I had asked him to!

He told me what to say..... He's awesome like that. He talked me through the questions and kept asking when the chemo was supposed to stop. He kept track.

 

[Lilypad]

You are blessed to have your hubby by your side!!

 

[hotcoffee]

Someone over in the Religion Forum asked me to talk about how I found out I have colon cancer. I answered it there but figure it's more appropriate to put it here as well. Maybe it will help someone avoid the diagnosis I have now.

Here it is again....

No problem at all... I had a kidney stone which caused me to hit my max out of pocket for insurance. So my PCP and I decided it was an excellent time for a woman my age to go through the regular diagnostic testing. I had a mammogram, pap smear and a colonoscopy. The colonoscopy showed I had a flat [as opposed to mushroom shaped] polyp. It was removed and sent out for testing. It came back as cancer.

I was sent to George Washington University Hospital for surgery to undergo a right hemicolectomy. The section of the colon that was removed was sent to the lab for testing. It was classified stage IIIc. The oncologist at George Washington University Hospital said that no chemo was recommended because the cure was worse than the cancer. It appeared that although the tumor had entered the wall of the colon, it did not affect any of the 26 surrounding nodes.

In all fairness.... the oncologist that my PCP had me follow up with here at Calvert Memorial... [rather than travel back and forth to DC] suggested chemotherapy but since an older [and more experienced I assumed due to his age and prestige] doctor had advised against it.... I did not opt for the suggestion of the younger local oncologist.

After you have colon cancer.... it's routine that you have regular CEA blood tests and an annual colonoscopy. Before this testing was done.... I started to have some pain in the lower right part of my belly. My PCP did a physical exam and found a lump in the area. She ordered a CEA blood test and it came back higher than it should have. I was then scheduled to go back to the oncologist. He could not feel the lump that the PCP and I had found. I was scheduled for a colonoscopy. The colonoscopy showed more cancer of the same type in the area adjacent to the area where the resection had been done. The oncologist sent me to Mercy Hospital to see another colon specialist. He was as hairy as a bear... as I recall... he tried to get me to have a more sophisticated colonoscopy but dismissed the lump the PCP and I had felt. The pain was persisting and moving up in the abdomen by that time. I opted not to go for the procedure he was selling because he dismissed the fact I was in pain. He told me he felt is was a subcutaneous cyst.... nothing to worry about.

At the end of August, the pain in my belly was becoming a daily issue. That's when another kidney stone sent me back to Calvert Memorial Hospital. The CT Scan I was given [so that they could locate the boulder my system was trying to pass] showed a subcutaneous mass 5cm X 3cmX 2.5cm at the belly button area [where the pain was now persistant]. I went though the kidney stone removal and then was scheduled for more tests. The PET scan scheduled after the surgery showed a tumor that was now 6cm x 3cm x 2.5cm. [for those of you who don't have a cm measure... it's about the size of a small human fist].

Before the routine colonoscopy the only symptoms I had was occasional constipation. There was no blood in my stool, no pain.... no real signs. My family history has some colon cancer.

After a biopsy was performed I went back to my oncologist. My diagnosis is now recurring metastatic colon cancer Stage 4. It's terminal. The doctor explained that without treatment I would have a couple of months. With chemo and possibly surgery I could have as long as two years. When considering the surgery I should consider whether or not the surgery could remove all the cancer. Since there is a shadow on my stomach, a spot on my kidney, liver, and adrenal gland [along with the polyp in my colon that the doctor that did the colonoscopy could not reach during the colonoscopy], it isn't likely that the surgery I am scheduled to undergo will get it all.

The pain at my belly button is so bad that I am now on a lot of pain killers. I can't wear jeans anymore. The pressure on the belly causes intense pain. I have to wear non-restrictive clothing like dresses. Now I cannot stand for more than 3-5 minutes before feeling acute pain in the belly. I've gone through 5 rounds of chemo... [5-FU]. The tumor as only shrunk back to the size when it showed up on the CT Scan back in August.

After my surgery on January 12th.... the plan is for hubby and I to meet with the oncologist to go over the pathology report. I've used up 5 months of the 2 years.... we'll see what comes out of that meeting.

Thank you for asking.... the best way to avoid colon cancer is to have regular colon screenings. If you have a history of colon cancer in your family.... talk to your primary care doctor. Oh and the colonoscopy procedure has gotten a whole lot easier than it was just a few years ago. Even the prep that you have to drink is better.....

AND one last thing... if you cannot afford a colonoscopy.... talk to your PCP.... there are programs that will pay for your procedure. Colon Cancer caught early can be cured.

 

[Lurk]

How is a pain ridden drug popping patient supposed to know who is right? I mean should my doctor be someone I can trust?

[I've been trying not to mention pain or drugs because I didn't want some crook to try to break in my house.... note... if the crook is reading this... I don't keep them at home]

HC, do you have a family doctor that you trust to be your navigator? When doctors that don't practice together often start making conflicting recommendations in the care of a complex patient, they lose sight of the fact that one could be hampering the entire plan. The doctors should probably be sharing a common calendar that they trade back and forth outlining what they recommend in the coming weeks. Being on potent analgesics makes it hard for you alone to try to keep things straight. A trusted family doctor, nurse practitioner or physician assistant might help.

 

[hotcoffee]

HC, do you have a family doctor that you trust to be your navigator? When doctors that don't practice together often start making conflicting recommendations in the care of a complex patient, they lose sight of the fact that one could be hampering the entire plan. The doctors should probably be sharing a common calendar that they trade back and forth outlining what they recommend in the coming weeks. Being on potent analgesics makes it hard for you alone to try to keep things straight. A trusted family doctor, nurse practitioner or physician assistant might help.

My husband has been watching schedules and keeping up.... but we got bad information when we asked questions. My PCP is awesome. She has been watching things. Because I'm terminal she's been extra caring.

I think the issue here is that the oncologist and the surgeon may be working from two different angles. The Oncologist wants to shrink all the tumors. He did say that "unless the surgeon can get it all" I probably should stay on chemo. The surgeon is saying he can take out the tumor in my belly button area but makes no claim that he can get all of my cancer because some of the cancer is inside the digestive organs.

I'm in pain so I've opted for the "get the tumor out that's pressing on other organs causing pain". My husband made a comment yesterday that he couldn't believe the energy I had while on all the pain killers. I didn't take as many pain killers as I require some days. God had granted an answer to a lot of prayers... He let me have a great Christmas. I'm back in pain again today.... probably because I did so much yesterday.... but it's all ok.

I have a couple of weeks to go before my surgery, scheduled now for January 12th. Two weeks after that, we'll meet with the oncologist to go over the pathology report. I'll get to talk to someone who has seen my cancer with his own eyes. I'm hoping he can give me some concrete information that I can combine with the pathology report to plan the future.

I hope all of this helps someone else who may be walking around with a ticking time bomb inside them without knowing it. I hope I can help other cancer patients make better decisions and avoid some of the pitfalls we all face while on pain killers that fog what we hear and see.

I have a facebook page going too.... here's a link. I think I helped some people who were fighting Lyme. Now I've got cancer information to share.

I got an HP tablet with a keyboard so I'm going to be writing a book about this adventure that centers around my cancer and how I deal with it.... I'm hoping what I write will help someone else.... even if it's only to let them know they aren't in the boat alone. I'm not one to come up with a lot of feel good cliches.... I'm more the one that has a problem and deals with it... and the dealing with the problem becomes the adventure!

 

[Roman]

HC, you are the bravest of the brave! I am so happy to hear that you had a good Christmas. I had my first colonoscopy in 2007, and my most recent was December 8th this year. It is so important to get this done on schedule. Especially if one has a family history of colorectal cancer. The hardest part is the prep, I found that if you don't breathe through your nose, you can't taste it. Thank you Hot Coffee for putting this out there.