Port? What port?

cb123 · April 2016

It's like a fresh kind of hell.

My initial depression/PTSD seemed to last about 6 weeks and I felt it lift away. It's coming back. DMX, 20 positive nodes, the thought of chemotherapy and a team of health care providers who don't get it.

Yesterday, I was trying to explain to one of my 5 physicians (radiologist) how my deep seated emotions wont allow me to have chemo. As I pointed to the spot on my wrist where they had an IV for surgery I said, you can stick a needle in me for almost any legitimate reason, but I don't think I could ever allow you to stick a needle in me that will fill my body with these poisonous chemo chemicals.

She pointed to my neck and asked, What if we place the port here?

I didn't even know what a port was but the thought of what it might be, sticking out of my neck, along with her misunderstanding my meaning immediately drove me down the depression stairs.

I have Valium and Xanax for this and I took some Valium yesterday. I can't take them today because I'm going to need the pain medication later and I don't want to mix.

I played it off like I knew what a port was and decided she wasn't really the smartest one on the team after all. I did manage to come up with an analogy that she could wrap her head around.

I told her that I felt like a bruised peach. If it was up to me I would cut out the bruised area and eat the rest of the peach. The medical community wants to fill the peach with poison and hope it shrinks the bruise.

She offered that it was a good analogy but I believe she felt insulted. Could have been worse I guess. I might have said those things to the Oncologist.

Thanks for the venue.

cb123 · April 2016

I think I'll just turn this post into a little depression/pity party thread.

I feel like I'm walking a tightrope, teetering, trying to keep balanced and the simplest things can drop me right off. It's so hard to stay on without falling into depression.

I should stop thinking that these are simple things. Cancer is big and I'm not accustomed to making life or death decisions as often as I now have to.

I'll have some sort of a prescription for this tomorrow. Which only raises a batch of completely new questions, Do they work? Will they mix well with my other drugs? Side effects? Long term effects? Half life? Things I just don't have the strength to look into right now and I just have to trust my PCP (Primary Care Physician).

My hair has been coming out in my brush for months, from stress. I can't even complain because I'm in a new world where people choose chemo and suffer severe hair loss. But it's my hair. It doesn't normally come out like this and that's huge for me.

Casual acquaintances, grocery clerks mostly, are not speaking to me. They seem to be giving me space. I knew this would happen. People would treat me differently. I've been a couponer for 4 years, we all know each other's kids, but they aren't offering up the friendly greetings. It was like a fun hobby to go couponing and visit them and talk about the deals. I've been shopping there, across the street from my home, for 8 years. Now it's gone. I get in there, get my stuff and get out.

I haven't worked full time since Thanksgiving. I haven't been able to work from home since January. I can't focus. I'm running out of money and SSDI takes so long and I don't want to screw anything up. I want a professional to just handle it for me. Calling lawyers only adds to the depression. They're excited because of a potential new client and I have to explain the details of not knowing if I'm stage IIIC or IV. I don't want to go down there and do it myself but I guess I will have to.

I hate that I have to fight the doctors for "whole self" care. If something isn't in their "sorry-that's-not-my-specialty" treatment plan then it's inconsequential to them, though important to me.

I consider myself only mildly depressed today because I've seen myself lost for weeks. I don't want go back there. It's very hard.

cb

cb123 · April 2016

Today was sucking so bad. I finished the post above only to find that my transportation was an hour off and not in a good way. Then this happened:

Everything was going to be O.K. In fact he was a lovely man with a Batman sippy cup. We swapped stories and he played a beautiful Streisand tune that only made me cry a little.

Aside from almost fainting when the irradiated dye they gave me was injected into my vein, the day was OK. They had to wheel me around in a wheelchair until I could stand on my own again. A little water, a little lunch, a little fresh air then on to the bone scan. Now just waiting for the results.

I wish the doctors could understand that I just don't handle poison well, the techs all seemed to get it.

cb

ElaineTherese · April 2016

cb,

What anti-depressant have you been prescribed? I'm on Celexa, and it's been really helpful to me. I'm sorry that you feel like chemo is not for you. Many women choose to forego chemo. You have had a BMX and ALND, and that is the most important treatment, so long as you are indeed Stage IIIC and not Stage IV.

I was Stage IIIA, and as you can see from my signature, I did do chemo. Five months of chemo, and then (finally!) my surgery in January 2015. Then it was months and months of Herceptin until December 2015, when I finished active treatment.

Was the poison worth it? Who knows. We each make these decisions independently, based on our own circumstances. I didn't mind chemo; I was lucky to have mild side-effects, and managed to lose 10 lbs. Of course, I've regained them since......

I'm sorry that you've struggled financially. I worked full-time through chemo and rads, and I'm still working. But, it hasn't been easy. This is a sad thought: if you are Stage IV, Social Security Disability is pretty much automatic....

Take it easy; let us know how your scans turn out! Take care of yourself, and best wishes.

cb123 · April 2016

Hi Elaine,

I have no idea what the PCP has in mind for drugs. We've been discussing it for months and I think it's finally time. I'm sure it'll be some serotonin increasing something. He's offered up Prozac but I took one of a friend's once and it put me right to sleep. I couldn't believe she took 3 a day.

I lost 10 pounds of bosoms. I seriously considered the DIEP flap for it's tummy tuck like properties, but they won't let me have it without the reconstruction. Winking

Funny, right up to the surgery I could eat several times a day, now most days I don't remember if I ate or not. I might lose another 10.

You're so lucky that you could take the chemo. I had a hard time taking the MUGA test. It just all goes against everything I think is right.

Thanks for the response and best wishes to you as well,

cb

cb123 · April 2016

I hate to see my PCP sad. I forgot that he didn't have a prognosis on me yet and I just started talking about stage IIIC or IV like it was normal. He really is a sweetie.

I have a feeling it was the first time he ever prescribed breast prosthetics. Luckily I had called the prosthesis shop beforehand so I could tell him what to ask for. Poor thing, probably never prescribed a bra before.

I told him that I trust his judgment and would take whatever anti-depressant he thought was best, he picked Lexapro 10.

I just googled it and have to laugh, though I see why he went here first. He said it's good for both depression and the occasional anxiety.

But google adds to that:

Body dysmorphic disorder: A mental illness involving obsessive focus on a perceived flaw in appearance.

Kleptomania: (lololol!) An impulse control disorder that results in an irresistible urge to steal.

Gotta love Google.

cb

cb123 · April 2016

"I really have tried being nice to the medical community this time around but I've been doing it all wrong. I've only been using 10mg of Valium."

Today I am seriously doubling up and taking 20mg. I'm meeting with my surgeon for the last time and I have to do something to shut my mouth.

I can't help but think of the Medical Practice where the oncologists she's referred me to work, as a puppy mill but for cancer patients. VOLUME.

When my insurance wouldn't pay for the BRCA test, she did.
The Medical Practice for the oncologists is owned by a chemo drug company.
The MO she referred me to has a history of taking Pharma money.
The MO she referred me to didn't consider distant metastasis or hormonal therapy and went straight to chemo,
The MO she referred me to sent me for "Genetic Counseling" via his same Medical Practice, that seemed more interested in getting my family's contact info than counseling me with any pertinent genetic info. Marketing expensive cancer care to my cancer frightened family???
Not to mention how rudely I've been treated by her and some of her staff. (The staff has came around after getting to know me better but she hasn't.)
Surgeon swears up and down that the MO she referred me to is the best and everybody loves him.

Everybody without a brain! Is she planning on giving up private practice and trying to get hired on by this cancer mill? If I take the Valium at 9, I should be sufficiently "quieted down" by our 10 am appointment.

Fuck her.

cb

cb123 · April 2016

Here are some of the due diligence links I came upon when checking out my MO.

MO & Gyn Onc & Genetic Couselor I was referred to: A member of The US Oncology Network

Owners of The US Oncology Network: McKesson Specialty Health

Owners of The US Oncology Network Wiki Page: McKesson Corporation is an American company distributing pharmaceuticals

My BC Surgeon, who I thought was in private practice with partners, is actually owned by a British PLC (publicly held company).

Off I go, to not yell at her.

cb

cb123 · April 2016

Thanks Kayb,

I have found new physicians. This really has been hard, but I don't have anything to compare it to so it hasn't been too hard.

The drugs worked and I was nice as can be to the surgeon. I didn't even mention that I put my own team together, I let her think I was moving forward with her choices.

cb

cb123 · April 2016

Doing my own homework again between MOs.

These are the some of the tests used to determine distant metastases:

blood tests (including tumor markers in some patients)
whole-body bone scan, with or without X-rays of specific bones
MRI of the spine or brain
CT scan of the chest, abdomen, pelvis, and/or brain
PET scan
X-ray or ultrasound of the abdomen or chest
bronchoscopy if you have a constant cough or trouble breathing
biopsy of any suspicious area
a "tap," removal of fluid from the area with symptoms to check for cancer cells; a pleural tap removes fluid between the lung and chest wall and a spinal tap removes fluid from around the spinal cord

The current MO thought to order nothing. I had to ask. At least I now know what to ask for now.

I'm a quilter. I've lived in a world of quilts & sewing for 30 years. I know things. LOTS of quilty things.

I've also been in the mortgage industry for 30 years. I know LOTS of mortgage related things.

This is a new world of medicine and medical care for me. I know relatively NOTHING.

I do know to trust my feelings. I've been feeling like I'm being railroaded. The medical community would have me ignore that and be grateful to those in charge.

I need to be in charge of these things. Not some random MO that I just met.

Just building strength today to face the week ahead. Doing my educational push ups.

Off to learn which tumor marker tests I have yet to have been given.

cb

ElaineTherese · April 2016

Hope you find physicians and a treatment plan you're comfortable with! It's not always easy, when you're not sure who is looking out for your best interest.

cb123 · April 2016

Everything's scheduled and happening, it just seems to take forever.

Monday is spinal/thoracic MRI, final test I had the old MO order.
Thursday meet with old MO to discuss test results.
Following Monday meet with new MO and discuss test results with her.
Similar plan in place for the Gyn/Surgeon and Radiologist.
Current Gyn Onc/Surgeon has me scheduled for an ultra sound and CT scan. Taking those tests for second opinion to new Gyn Onc/Surgeon.
Current radiologist is in practice with the BC Surgeon. I'm meeting with the new radiologist the last week in April.
New MO & new radiologist practice together.

I think I have this figured out. I should be OK. Something will probably crash in there somewhere.

There are a couple of blood tests that the new MO will have to run & whatever else they know about that I'm missing.

I'm looking forward to Thursday and all the test results.

AND saying goodbye to the old MO.

cb

cb123 · April 2016

This is the only marker current MO ordered:

CA 27.29: may mean that breast cancer is present - (I scored a frighteningly high 183 here.)

Examples of markers your doctor may test for include:

CA 15.3: used to find breast and ovarian cancers
CA125: may signal ovarian cancer, ovarian cancer recurrence, and breast cancer recurrence
CEA (carcinoembryonic antigen): a marker for the presence of colon, lung, and liver cancers. This marker may be used to determine if the breast cancer has traveled to other areas of the body.
CTC Circulating tumor cells: cells that break off from the cancer and move into the blood stream. High circulating tumor cell counts may indicate that the cancer is growing. The CellSearch test has been approved by the U.S. Food and Drug Administration to monitor circulating tumor cells in women diagnosed with metastatic breast cancer.

ksusan · April 2016

I'm glad you're going to see other professionals and I'll be very interested to hear what they have to say.

cb123 · April 2016

Me too. Stage IIIC is like a sick joke to me with 20 affected lymph nodes.

There is no way that cancer hasn't moved into other areas.

You would think that everyone with cancer would be thoroughly checked anyway just because it's cancer.

I wish I could stop obsessing about it and move forward. At least Thursday I'll have a clearer picture.

exbrnxgrl · April 2016

Hi cb123,

I am glad you are finding a new medical team. Having confidence in your doctors is important. I have been stage IV for almost 5 years and have remained NED since initial tx.

Although it is tempting to think that anyone with cancer should have be checked thoroughly, tests are really not needed for every situation and many, like scans, expose patients to unneeded radiation. Blood work, particularly tumor markers are not accurate for many people and if markers are up, just lead one backmto scans. Even at stage IV, many doctors do not do tumor markers and how often one has scans varies widely, depending on the individual and their doctor.

Do many positive nodes mean your cancer has metastasized? Well, it's not a forgone conclusion and the opposite is certainly not true. I had a single positive sentinel node and metastasis that no one expected.

As for expertise in an area, I envy your quilting and business skills . I am an educator and am proud of the expertise I have in my field. However, when it comes to breast cancer, I will never be an oncologist. I am a well informed health care consumer ( yikes! Far too much health care) and I know a lot about my situation, but short of going to medical school, I will never rival my oncologist's level of expertise. I trust her implicitly and that makes all the difference. I hope you build a positive relationship with your new doctors as I think that will allow you to move forward and not obsess as much. Time does make this easier for most of us. Take care.

cb123 · April 2016

It looks like I have a very aggressive form of cancer. As I was reviewing my notes and checking out the frequency of the chemo suggested, I found it to be "dose dense." So, not only aggressive chemicals but aggressive dosing. I do not agree with this course of action. I think it's not well thought out and will not be as effective as it is aggressive.

When the BC surgeon announced that she was going to do a double mastectomy, she did not ask or discuss - she announced, she looked up to see if I'd blink. I did not blink. I agree with that course of action.

I will never be as educated as this MO. I also would never take Pharma money or work for a drug company that operates chemo mills. Clearly those actions have caused at least one of his patients to question his motives and his judgment.

I'm very happy your MO has done well by you. Looks like a success for you both. Maybe I'll get lucky.

Thanks for sharing,

cb

And if anyone thinks it's just aggressive chemo they have in mind, you should see what the radiologist has planned. My whole upper body will look like a French fry.

cb123 · April 2016

Guys,

This stuff runs in my family. I have lived more years on this Earth than the women who came before me. I have been blessed.

I don't think like medical professionals.

I would rather suffer the cancer than the chemo.

I, normally, live a happy life. Look at this guy, living a happy life. Not afraid to die.

I am not afraid to die.

cb123 · April 2016

Darlings,

Thank you all for your support.

This website has given me a lot of great information in their articles which I've found to be both reliable and helpful.

This forum and all of you have been a great support and a font of good info.

Sometimes I think hanging around here in this forum adds to my obsession as well as my depression.

I really need to enjoy my happy life more and not wallow in this illness. (See happy guy above? I could be smiling like that.)

I hope you know how much you've all helped me at this very difficult point in my life. I only wish I could have done the same for you, but as you can see, I've been pretty self absorbed.

I'm going to wake up tomorrow and if my thoughts go directly to cancer, I'm not coming here for support.

I'm getting on with whatever is left of my life.

I'll probably be back in a few years, closer to the end.

Thanks so very much for all your understanding,

cb

Port? What port?

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