Its been a while...

I can't believe it's been so long since I've posted anything!  There just hasn't been much going on medically for me to mention.  That's a good thing, right?

I did have my every six months blood work done in July.  My results were all good!  My pancreastatin went back down.  It was at the very top of "normal" at 135 last time and now it's back down to 76.  They forgot to do my Chromogranin A so I have to go back in next week for it so that we have the results when I meet with my oncologist mid-Sept (for the last time... sigh--he's leaving for another hospital).  I don't know if it's really important to do it since my pancreastatin was normal though but I am curious to see what it is.  I'm sure it will still be normal.

I saw a PA last week.  It was probably a waste of time/money since I see my oncologist next month but they wanted me to see him since I was originally supposed to see the oncologist but he was out of the office that week.  I had planned on cancelling the appointment with the PA depending on my blood test results but I kept forgetting.  I did ask the PA who he thought I should see since my onc is leaving.  He told me about a new oncologist that he really likes but this Dr. is only there once a week so I'm not sure that will work out with my shot schedule.  I'm planning on asking when I see my doc.  He's moving up to Huntsman Cancer Institute, which is an excellent cancer hospital that does a lot of research.  He wants to focus on that more and spend time with his family (so I was told--I'll get the real story from him)!

I've started a new prescription for my hot flashes and mild depression.  Paxil.  It's helped decrease the number of hot flashes but not stopped them completely.  I haven't decided if the side effects are worth it although they have gotten better.  Dry mouth and occasional nausea is all I've been having since the first week.  The first week was bad.  Lots of nausea and a constant headache.

Am I depressed?  I think I was a bit depressed.  Not super bad but someday's I just wanted to go back to bed.  That's hard to do when you have to work full-time.  I do think I'm feeling better--more positive.  I'm still super tired most of the time but it seems to come and go.  I'll give the Paxil 6 months.  I know it is hard to stop taking and you have to wean yourself off so we shall see.  I do have a follow-up with my GP who prescribed it in November.

On a funny, not medical note, my dog, Sookie, who is 6 years old and has never destroyed anything decided that my invisalign-type retainer was just too much to resist.  I had taken it out in the middle of the night and set it on my nightstand.  I guess she just had to have it and chewed it all up into little bitty pieces!  I've had it for about as long as I've had her so it was past time for a new one.  Still, really?  Calling the orthodontist and telling them that your dog ate your retainer?  It's actually not that unusual.  He said they can't resist them...  It's worked out for the best because my front teeth have moved a little bit and with a new retainer, we may be able to get them to move back!  I go tomorrow to pick it up.  It's not a invisalign retainer but the old hard plastic, metal bar type.  It'll have springs on it to move my teeth.  I hope I can get used to wearing it.  I had one like it when I first got my braces off and it wasn't too bad.  Below is Sookie.  She's a Havanese.  Best.Dog.Ever!

 

3 years...

I wasn't sure I was going to write anything about my 3 year "Cancerversary."  Yes, I'm happy that I am still here.  I'm not "celebrating" getting a cancer diagnosis although I doubt anyone does.  It is more of a time to pause and reflect on the past 3 years; acknowldge that I am still here and have few issues... 

Part of me can't believe it's been 3 years already!  Where does the time go?  At other times, it seems like I've lived with this ROCK over my head forever. 

Why a Rock? 

We've lost several fellow ZEBRAS recently.  It seems like they are doing well, then have a few issues that quickly accelorate and then they die.  It's like a rock slide.  Everything is smooth sailing hiking and then BAM!  Rock-slide and you are in deep shit doo-doo. 



Here's to 3 more!

A sad day, saying goodbye to a fellow zebra

I wasn't expecting it so soon.  The sad news that a fellow zebra has earned her angel wings.  I didn't know her personally and was late to her story, through her Caring Bridge website but got caught-up in her strength and drive to CURE her cancer!

Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)?  I know for Sara, her choice was exactly what she wanted.  She fought for it.  She moved to another city.  She battled her insurance company for approval.  It was her only chance for an actual CURE.

Sara was dx'd with mid-gut carcinoid cancer w/mets to her liver.  Stage IV.  Same as me.  She had surgery, sir spheres and PRRT (in Germany).  She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors.   She was told if it wasn't for her liver, she wouldn't have cancer!  I know that feeling although I'm pretty sure my tumor burden is much less than Sara's was.

Sara decided to seek out a liver transplant.  In her quest to find the BEST, she found two top notch transplant surgeons.  One told her he won't do liver transplants on Carcinoid patients anymore.  Why? Because 40% of the time it recurs in the liver.  His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor.  It's was described as somewhat like changing the engine of a car.  There is only one place, I believe, that does them and that is the Miami Transplant Hospital.

I'm not going into too much detail as it's not my story to tell.  Sara sailed through the transplant.  She was released from the hospital in a few short weeks.  She then developed GVHD (graft-vs.-host disease).  I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn't know it could happen with organ transplants.  It does make sense.  I thought of rejection but GVHD is different.  It is where the donor organ(s) fight for dominance with the hosts.  It looked like Sara was winning her battle but then things turn for the worse.  She died this morning.

She leave behind a loving husband and two beautiful daughters.  My heart breaks for them.

I'm not sue what I would do if given this option.  Take a chance for a cure?  Or take the chance that my cancer will remain slow-growing (until it isn't), which could be 5, 10 or 20 years?

I know from reading Sara's blog that she made the right choice for her.

Scan results--sort of...

I called my cancer clinic Wednesday to see if they had my scan results. I got a call back a couple of hours later. The twat  twit that returned my call wasn't even the nurse! I think it was one of the front desk girls. While I appreciated the prompt return call, I was taken aback by her inability to tell me much. I am frustrated because she said they didn't compare this scan to my last scan because it was done at a different hospital (did I change insurance?) duh… OK, why couldn't they get my scan when they had NO problem comparing my past mammograms from said hospital? I had my last diagnostic mammo at this same hospital that I had my recent scan. I had my past mammo’s at the hospital I had my last scan (a year ago). It makes no sense to me. Probably not to you now either!

So, getting to the results. it sounds like I actually had “lesions” in my liver disappear! Great news so why am I not happy? This twat twit asked me if a millimeter was bigger than a centimeter! Pre-cancer I wouldn't have known either. I asked her how big are these remaining “lesions?” The only one she commented on was 9 mm, which is pretty small. Last scan they were 1.2 cm or smaller. I had around 10 but even my oncologist said we couldn't be sure what they were. Hmmm, I've had a surgeons hands on/in my liver cutting out what he could, ablating some and leaving the rest so I think we know what they are! Anyhoo, she did say she would put the report on my oncologists desk as he wasn't in the office. OK. I seriously doubt I will hear from him, which is fine. I’m good. I’ll get the report one of these days on MyChart. She did mention that I have a fibroid. Argh. I had one removed a year and a half ago (or so) when I went it for a uterine ablation due to continued/heavy bleeding. It hadn't shown up on my scan nor did it show on ultrasound but my OBGYN said it was about the size of my uterus and most likely causing the bleeding. After removing the fibroid, she tried to do the ablation but couldn't because my uterus was done! It said, “nope, no more hands or machines in there.” It did stop my bleeding so I was ok with that. The twat twit told me I should follow-up with my OBGYN. She said it was near in or on my right ovary. Can a fibroid grow on your ovaries? I thought they were just in your uterus. Guess I’ll Dr Google that one. I’m sad I can’t go back to the OBGYN who did my last procedure (due to job and insurance changing).  She was awesome and I really liked her. I felt more compassion and concern from her than I do from any of my other doctors! I haven’t found another one yet. I’ll just wait and see what the report really says.

A long story for what is basically good news! I’m still not happy.

Now it is Friday. I haven't heard from my oncologist and the report it still not in MyChart. I think I will call the hospital today and ask to get a copy of my scan and the report!

An update:  

A quick update on my scan results. Since I am an impatient patient person, I called the hospital and asked if I could get a copy of my scan and the report. They told me it wouldn't be available until Monday so I canned my cancer clinic and asked them if I could swing by and pick up a copy of the written report. It's closer anyway. I just wasn't feeling very confident after talking to the twat twit from their office regarding said results.

Doesn't sound like any of my "lesions" have disappeared! I still have "multiple, small lesions through all lobes of the liver." They measured 3 of them (she made it sound like I only had 3 and didn't give me the correct measurements either). My last scan said they were all 1.2 centimeters or smaller. The biggest now measure 1.4 x 1.6 centimeters, which is not much growth. The other two mentioned are just shy of a centimeter. Nothing to be worried about with Carcinoid like mine, which is slow growing. I do feel better since reading the results "with my own eyes."

I hope everyone has a lovely 3 day weekend (if you are in the States).

Scanxiety...

Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.

My definition: Anxiety suffered while waiting to get the scan!

I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.

I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.

Keep your fingers crossed for good results!

Also, today is World Cancer Day.

Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Patient Advocates

I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.

http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?

I'm not really familiar with this list but I'm going to check it out.  I'm #316!  You can follow me on Twitter through the link on that site.  I'll try and add a "twitter" button on my blog too.  I don't tweet much--I'm hardly online anymore after working hours.  I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it!  Of course with smart phones and iPads it not easy to get away from our online "life".

So what is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.

Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy

I'm not sure I consider myself a "patient advocate".  I started my blog to keep my friends and family informed on my medical issues and treatment.  Of course, I think most personal cancer blogs start out that way.  I do want to share what I learn along the way and help others.  I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.

To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer".  Lends moral support, medical information and shares treatment experiences.

What is a Patient Advocate to you?