The Much Ado About Nothing Cancer Update...

This morning, I had a message from a friend stating that she hadn't seen any updates from me in awhile and asking how I was fairing. It occurred to me that I should probably update people even when there is not much to update on the cancer front. 

Here's the latest:

Mostly my life is about pain management. My doctor has put me on a pain patch (Fentanyl) which slowly releases opiates into my system. The patch gets changed out every 3 days and for the most part is keeping my pain at a reasonable level. In no way am I pain free, but most days it's at a level that I can manage. For the days when the pain exceeds manageable levels, I have Tylenol or Aleve for when the pain becomes a nuisance and Percocet for when the pain is off the charts, which fortunately doesn't happen that often.

My biggest issues these days are motivation and exhaustion. Because my pain is fairly well managed, I could be spending my time traveling and sightseeing, but I'm having issues with motivation. Getting my butt up and out of the house is proving to be a difficulty that I hadn't counted on. Additionally, I get tired very easily. My days go something like this: wake up, watch The Today Show, read, nap, read some more, nap, watch Judge Judy. Or perhaps: wake up, watch The Today Show, watch a movie, nap, watch another movie, nap, watch Judge Judy, etc. It's quite tedious and boring, but it's what my life has become. I hope that eventually I'll get my energy and motivation back.

I have a planned trip to Massachusetts for a long weekend which will happen in a little more than a week, where I will visit with my students and see some friends. I'm hoping that perhaps that will be the kickstart that will get my motivation revved up and get me back on the road again.

That's it for the Much Ado update.

What's a Foodie to Do?!

I've admitted to this before: I am a foodie. A foodie is "a gourmet, or a person who has an ardent or refined interest in food and alcoholic beverages. A foodie seeks new food experiences as a hobby rather than simply eating out of convenience or hunger" (Wikipedia). I love food. I love eating food. I love discovering different foods. I'm less interested in alcoholic beverages, but I've been known to imbibe a beverage or two in the past.

When I learned that my life span was being cut severely and that I had approximately a year to live, I decided to hell with "healthy" eating habits. I was going to eat what I want, when I want. It was a decision that played out well over the first few months. Traveling through Europe was a gastronomic delight! I experimented eating all the local foods: haggis, black and white pudding, a redonkulous amount of roasted pork (thank you, Germany, Czech Republic and Austria), and such. Did I care that the apfelstrudel I had in Austria was 500 calories a serving? Nope! Did I scarf down an entire plates of pasta in Italy? You betcha! I did skip the escargot in Paris because...well...yuck!! I even designed My Last Supper. I figured if I had to go, I'd go out with a gastronomic bang!

And then came the abdominal pain -- a foodie's worst nightmare! You see, I had developed a growth in my upper abdomen which is apparently sitting on a nerve which causes me to have unrelenting stomach pain. As a consequence, eating has become less fun. I now "eat to live" instead of "living to eat." I'm finding this turn of events truly saddening. After all, I don't have many things that I can enjoy about life right now. Food, books, movies, and friends and family are the extent of my world and now I've lost the joy of one. I now have to eat several small meals throughout the day and most of these meals are either of the liquid variety (protein shakes) or bland and boring. Anything more than that and I've got tummy troubles. In addition, my taste buds are all messed up right now so everything (even water) tastes terrible.

So I return to my original question: what's a foodie to do? Will I ever be able to have my dream Last Supper?? If I do decide to have my Last Supper, it'll have to be spread out over several days. Anyone have any suggestions? I'm open for any type of advice.

If I haven't said it lately, having cancer sucks! I wouldn't wish this disease on my worst enemy...well, maybe my worst enemy I would but certainly no one else.

Beef Wellington...yum!

I'm Beginning to Loathe All Doctors!

In my 40+ years on this fine planet, I've been to my fair share of doctors - all types of doctors. This fact is particularly true when you consider that I have had two cancer diagnoses and a major depressive episode -- you see lots and lots of doctors with all those issues.

Let's begin with the most annoying fact about doctors...wait times! Has anyone ever arrived at a doctor's office and been seen by the physician within a reasonable amount of time...say 5 or 10 minutes? A couple of weeks ago, I went to my first (and most likely final) visit to my new primary care physician. My appointment time was 12:15pm. I arrived at noon and was brought into the exam room at 1:55pm and finally saw the doctor at 2:05pm. An hour and 50 minutes past my appointment time. Does anyone else find that reprehensible? This scenario is typical of all doctor's offices. I've even had the first appointment of the day and still had to wait an hour before being seen by the doctor. <sigh>

After the annoying wait times, I find the "god complex" of doctors to be equally irritating. I know that they had a shit ton of schooling - 4 years undergrad, 4 years med school, and anywhere from 3-8 years of training for their specialty, but that does not make them the omnipotent or infallible. Yet, they expect their patients to follow their directions with no questions asked. Well, I say "screw that!" Question everything that your doctor recommends. For example, my oncologist set me up for a biopsy of one of my tumors to ascertain that my metastases are actually endometrial. The more I thought about it the more I questioned why I was putting myself through this test. I called the doctor to question why he recommended this test. He wanted to make sure that it was endometrial because that would determine the treatment recommendations he would make. That means that he did not listen to my decision which is to seek no further treatment! So, I cancelled the test because I'm not going to waste my time and money on unnecessary tests. Why don't doctors listen? Oh, right - because they're "god" and "know what's best for their patients".  <grrrrrr>

Also, doctors seem to think that patients don't deserve to have all the information required to be fully informed. At least, that's been my experience. My last visit with the oncologist to review my CT scan, I was told that "as expected, everything was slightly worse." What I wasn't told was that I have new tumors in various places and a new complication. The only way I found out about this bit of news is that I asked the office to send me a copy of the report for my records. It made me feel like my doctor didn't want to bother me with the details. F**K THAT! It's my body and I deserve to have all the information so that I can make decisions based on knowledge. Fecking doctors!

Here's the full 411: In the two months since my last CT scan, there has been moderate growth of the existing nodules. In addition, I have "multiple [new] lesions" in the liver and the pelvic region, plus a small pericardial effusion (fluid around the heart). Now I don't know about you, but I believe these were important points that the oncologist should have mentioned to me because there are side effects from these developments of which I should be aware. Consequently, I have to return to my oncologist and have yet another conversation with him that he is to monitor my disease, not treat it. And if he can't deal with that, then I will ask to be assigned to a different doctor. There are several in this office.

FECKING DOCTORS!!!!

Tackling the Practical Tasks of Being Terminally Ill...

There have been a number of tasks that I have ... well ... it's not that I've been avoiding them. I just put them on the back burner because I had better things to do: seeing Europe and the US, but today it was time to start tackling these necessary tasks.

Task 1 - Health Care Power of Attorney/Living Will 

Quite frankly this task is one that everyone over the age of 18 should complete and keep up to date on a regular basis. A health care power of attorney/living will gives directions to your health care proxy about life prolonging medical treatments. I can hear people now: "But Sandi, I'm young" and "I'm not sick." Yes, and tomorrow you could walk out of your house and be hit by a bus. Do you want to be the next Terri Schiavo? I do not. Of course, I have had a living will for years, but it needed some updating. Now, it's all ready to be signed, witnessed, and delivered to my physicians. It's pretty standard. What are my wishes? Unsurprising, no life sustaining treatments are to be given. Done!

Task 2 - Last Will and Testament

Let's start with the knowledge that I did have a will drawn up -- years ago. But times have changed and so has my situation; therefore, I needed to update this document. Fortunately, thanks to online legal websites, this chore was easily accomplished - particularly as my will is pretty basic. Another document ready for signing, witnessing, and storing. Done!

Task 3 - Researching Pennsylvania Cremation

I decided decades ago that when it was my time to go, I did not want to be stuffed in a box and placed in the ground. My plan is to arrange and prepay for the disposal of my remains. I spent some time today looking into crematories in the area and the approximate cost. Next step is to choose one and make an appointment to finalize my plans. 

Task 4 - Dispersal of Ashes

This assignment was more difficult than I expected. How do you decide where your ashes should be dispersed? First off, yes, I want my ashes spread somewhere. I don't want them sitting on someone's mantle. Ugh! Then I narrowed it down to something with water. One of the random facts I once listed about myself is that I love the water - any type (lakes, ponds, oceans, swimming pools, etc.). As I do love the ocean (but hate the beach), I have decided that I would like my ashes to be scattered into the ocean. I think my brother, Tom, needs to fly to Florida and he and my other brother, Tim, should rent a boat (bringing a case of beer with them) and take my ashes out into the ocean in order to scatter them properly.  No throwing them into the ocean from the beach. Uh uh!  I do not want to end up on the sand! With my luck, I'd end up in some jerk's ass crack.

Task 5 - Plan a "Good Death"

I read an article about tasks that the terminally ill need to accomplish and this task was one of them. What they meant by "good death" is: Where do you want your final moments to be -- your home, a hospital, a nursing home, or hospice facility? As with deciding on my ash dispersal, I found this task to be a bit difficult. Ordinarily, I would say I would prefer to die in the comforts of my home, but I don't actually have a home. Yes, my brother has kindly allowed me to live in his home, but it's not exactly my home. If it were, there would be different toilet paper in the bathroom. Plus, it's not fair for my brother to have that burden. A hospital is out. It's how my father died and that sucked! So I suppose I need to start looking for a good inpatient hospice facility. I started with making a list of some area facilities. The next steps would be to go and visit them to see what they're like and if they would fit into my "good death" scenario. Also, as cost is an issue, I have to find out if I can afford great hospice care. I'm sure I can afford crap hospice care, but that's not an option I'd want to consider.

Task 6 - Write my Final Blog

Okay, some people might find this ghoulish but I started to write my final blog which I will ask my brother to post after I croak. As this will be the last words that I will ever post, I want them to be perfect so I will continue to work and re-work this last blog in order to make it perfect. I doubt if it'll ever be perfect but I'll do my best to say goodbye to everyone in a way that will (hopefully) be equal parts of funny, interesting, and poignant.

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I had a few other minor tasks that aren't worth listing but were completed. I feel like I did well today on getting started and, in some cases, completing some necessary tasks. All in all, today was one of my more productive days of late.

And the Pain Goes On, the Pain Goes On (Cancer Update)

(What's the pop culture reference in the title that I co-opted?)

As I mentioned in my last update, this week was almost nothing but annoying medical appointments. After nearly 2 years of dealing with cancer, I'm over it. Can it all just go away? Even for a little bit? Nope, guess not.  And as I'm in too much pain right now to do any sort of sightseeing and traveling, it gives me something to do, I suppose. Here was my week:

On Wednesday, I headed to the hospital in order to have a thoracentesis performed. You may remember that I had fluid building up in the pleura around my lungs and this procedure drains the fluid. I arrived at the hospital at 7:00am and registered. I was told to head up to the Short Procedure Unit. Short Procedure - that sounded promising; perhaps I would be in and out in a short time. Nope! The nurse asked me to wait in the waiting room until they had a bed available. Around 7:45, the nurse (Lee) brought me back, where I had to change into one of those very sexy hospital gowns. After climbing into the bed, I went over my medical history with Lee. She then placed an IV in my hand and told me that they would be up in about 30 minutes to take me down to radiology. An hour later, I was finally carted off to the 1st floor. Both the nurse and the doctor gave me the overview of what the procedure would entail. Here's what happened: I was brought into the room, told to scoot to the side of the bed and lean over the x-ray machine bed. Then the doctor used an ultrasound machine to locate the pleural effusion. After marking the location on my back with a marker and sterilizing the area, he then stuck a rather painful needle into the area in order to numb it. Then a slightly larger needle was placed and the cap removed. The fluid flowed out into a liter glass bottle. I just had to lean and wait for the fluid to flow out. Approximately 10-15 minutes later, I was done and they bandaged the site. While I was waiting for them to roll me out into the hall, the nurse asked me if I wanted to see what had been removed. I said, "sure." I turned and saw 950 milliliters of bloody fluid. Holy crap! If you're like me and are a Metric idiot, 950 milliliters is 1 quart. A normal amount of fluid in the pleura is 20 milliliters. Well, no wonder I was having trouble breathing. Although oddly, it didn't do much to improve how I'm feeling. I'm coughing less, but otherwise, I still feel like hell. After a chest x-ray to make sure there was no pneumothorax (a collapsed lung), I headed back to the Short Procedure Unit and about an hour later (a little before noon), I was released and headed home.

The next day (yesterday), I headed back to the hospital for a CT scan. It was pretty much like every other CT scan I've had over the past 2 years. Arrive, sit, choke down a nasty barium contrast drink, lay on the CT machine, hold breath, get injected with a contrast solution, hold breath, and leave.

Today, I met with my oncologist to discuss everything. While he didn't give me specifics, he did say that the CT results showed that everything has gotten slightly worse since my last CT two months ago. Not surprising. He was disappointed that the draining of the fluid didn't do more, but he suspects that I'm just unlucky enough that even though the lung nodules are still relatively small, they're positioned in places that are causing me pain. Lately, I've been having stomach pains as well, and he suspects that's from the abdominal nodules. Oh joy of joys. He is still advocating chemotherapy and I am still adamant about not wanting to do any more chemo. So we have reached an impasse. The next step: the oncologist wants to be sure that it really is endometrial cancer that we're dealing with and not breast cancer so he is recommending a biopsy of one of the nodules. As there are now abdominal nodules that can be biopsied, the risk is minimal (as opposed to any lung nodule). Sometime in the next couple of weeks, I will have the biopsy to confirm that we are dealing with endometrial. This procedure seems stupid to me. What difference does it make if I'm dying from endometrial or breast cancer? Whatever. I left the office with a prescription for Percocet for pain and an appointment to see him in three weeks.

Pain, Pain, Go Away! (Cancer Update)

As I mentioned 2 weeks ago, I made the decision to head back to Philadelphia instead of continuing on my road trip to California. There were many medical reasons why I made that decision but mostly it was an extreme pain issue. If you remember back in January, the test results indicated that I had pleural effusion, which I needed to keep an eye on.

Reminder: pleural effusion is a build up of fluid around the lungs. And it is effing painful. For the past two weeks I've experienced everything from mild to severe pain - with occasional pain so bad that I've either vomited or burst into tears. The pain takes the form of a stabbing pain - like someone jabbing me continually with an ice pick with the occasional axe to my side. Adding to the pain is a chronic cough which developed thanks to the lung irritation. Pretty much the past two weeks have been hell.

Today, I met with a new oncologist. The doctor I saw in January was not covered under my new health plan. Let's not discuss what those visits and tests are going to cost me! Anyway, I met with my new oncologist who seems to be an understanding sort, but also a bit stubborn. So stubborn meets stubborn. Yay! Wanna guess who'll win this contest? Once again, I had to review my cancer history and my thoughts on moving forward. While he completely gets the desire to travel, he is also advocating the use of chemotherapy and Tamoxifen. <sigh> He means well and he did talk me into getting a prescription for Tamoxifen. Even though I have the pills, it doesn't mean that I'll be taking them. He may think the minor chance of a stroke or blood clots is worth trying it, I do not. Right now though, we're both focused on getting rid of my pain

Here's what's on tap for this week: (i) a chest x-ray (which I did after leaving the oncologist's office), (ii) another CAT scan of my chest, abdomen, and pelvis, (iii) a thoracentesis, which is a fancy word for draining the fluid around my lungs (see photo) - hopefully that will help with the pain, and (iv) meeting with the oncologist at the end of all this to see where we go next.

A busy week of medical stuff and I'm already bored with it. Stay tuned for further updates.

The Call With the Oncologist (A Cancer Update)

It's been 12 days since my latest CT scan and the oncologist finally saw fit to call me this morning to discuss the results and her recommendations. First, she had to apologize for not calling me before today. Of course, it helped that I had a 10 minute diatribe with the receptionist regarding the doctor's lack of response in calling me. I even threatened to find a new doctor, so you bet your ass she should apologize.

Anyway, the long and the short of it is that Dr. J. made the exact same recommendations that my last oncologist made (blog: Weighing the Options): chemo, Tamoxifen, or Bevacizumab. Yeah, nothing new. No additional treatments available. No cure for what I have.

I told her that I'm away and whenever I return to Philadelphia, we'll meet, but I'm not changing my mind. I will remain treatment free. The one thing that I missed from reading the test results myself was that there is some fluid in my lungs (pleural effusion), which I will have to keep an eye on. If it gets worse, then I'll go to urgent care and have the fluid drained - now doesn't that sound like a fun way to spend some time.

That's all I have to report on the cancer front. Right now, I'm enjoying the gorgeous Florida weather, well away from the snow and sleet of the north. I'm having fun spending time with family and friends here in Florida. I can't wait for my niece's wedding and my trip to Orlando to see Micky and Harry Potter.

All I have to say is:

New Oncologist and Latest CT Scan (Cancer Update)

When I got back from Europe, I knew it was time to find a new oncologist. I didn't think it was efficient use of my time to travel 6 hours to Newburyport for doctor's appointments and tests. I researched the Philadelphia oncology centers and decided to go with Fox Chase Cancer Center, a National Cancer Institute-designated Comprehensive Cancer Center research facility and hospital, and about 4 miles from my brother's house. The location makes it terribly convenient. FCCC has a good reputation and is ranked as the second best cancer center in Philadelphia. (Number 1 is University of Pennsylvania.)

The first week of January, I went through a rather lengthy pre-screening call with a nurse and was given an appointment time last week with a doctor. I'll call her Dr. J (not Julius Irving). Last week, Dr. J and I met to discuss my history and suggestions for the future. During our appointment, we both agreed that chemotherapy was not useful, but she wanted to wait until my next CT before making any possible recommendations. I told her that I was not really interested in any treatment at the moment, but I will listen to her suggestions and then make my decision. For the record, I really like this doctor. She listens and doesn't judge.

This past Wednesday, I went back to FCCC for the CT scan, which Dr. J said that she would call me with the results. I had indicated that I was leaving for my road trip and if she could call me before I hit the road, I would appreciate it. I waited around yesterday and today, waiting for a call that didn't come. I even called FCCC around noon today to ask the nurse if she could remind Dr. J about calling me with the results. 

Here's the interesting thing about FCCC. They put all medical records online where I can freely look at them. While I think this is great, it also sets a bad precedent if they post medical records before the doctor has a chance to review them with the patient. For instance, I decided to log into my FCCC account and check to see if the test results were there and lo and behold, there they were. So while there was nothing terribly earth-shattering in the report (nothing that I didn't expect), it's probably a bad idea for a patient to look at the test results before reviewing them with the doctor. But since I've already looked at the results, here's what I found out:

For some reason, they compared the results with my February 2014 scan and not my August 2014 scan. The largest lesion in the right lower lobe measures 3.1 x 2.7 cm (which is three times what it was in August 2014). The right middle lobe metastasis measures 2.7 x 1.9 cm (about twice the size). There a new large pleural effusion on the left side. A left pleural based metastasis measuring 3.3 x 2.4 cm which is new.  Plus some smaller nodules. In addition to the growth and new nodules, there is a new node in the pelvis which measures 2.1 x 1.2 cm. Oh joy!

Like I said, nothing surprising. I fully expect there to be growth in the nodes. I expect that the doctor will probably call me some time next week when I'm on the road. If she says anything that is reportable, I'll post it. Otherwise, time to hit the road, spend time with friends and family, and do some US sightseeing. 

Maneuvering Through the Disability Minefield

One would imagine that when someone has a legitimate disability, there would be all sorts of assistance available from the date of disability and yet, that's not entirely accurate. I've learned much about how disability insurance works and how much it screws people who are most in need of assistance.

First, let me say, I'm not some Pollyanna who believes that everyone who applies for disability has a legitimate claim. There are those who are trying to get a free ride in this world, but I'd like to think they're in the minority. Okay, so maybe I'm a wee bit of a Pollyanna. It's interesting to note that, nationwide, a whopping 70% of initial disability applications are denied.

Here are some things that I learned by applying for disability:

1. Many people have to apply several times and/or fight with the SSA before their disability is approved. There are a few 'automatic' approvals, such as if the applicant has a terminal illness. These cases are "fast tracked" and the person is almost immediately granted disability status. For example, yours truly. Within a couple of weeks of applying for disability, I received notification of approval of my disability claim due to my case being fast tracked. But that is the rarity. Most people have to wait months and months, in some cases, years, before their disability claim is decided upon.

2. If your disability claim is approved, you better have at least six months of financial support you can tap into, because all disability cases are subject to a five month waiting period before benefits begin. Erm...what? Yes, you read correctly. Applicants who are approved for Social Security disability lose the first five month of benefits. I suppose they want to make sure that the applicant is truly disabled and that they won't be able to go back to work in the intervening five months. There is a supplemental insurance but if you have any assets, you can forget about tapping into the supplemental insurance. Not everyone is fortunate enough to have a sibling who is willing to let them come a crash in their house. I'm not certain what people with limited incomes do during the five-month waiting period.

3. After the qualifying disability, the applicant starts receiving Medicare insurance after 24 months of disability! As annoying as the five month waiting period is, this 'rule' is the most aggravating. People who have a disabling illness need health coverage more than anyone else. The 24-month waiting period for Medicare is insane. Most likely, I won't even see 24 months of disability. I would like to give huge thanks to Obama and the passing of the Affordable Care Act, which means that I can get medical coverage, but why do I have to pay out of pocket for my healthcare coverage, when I'm disabled? If this illness had happened before the ACA, I would have been screwed!

4. Dealing with the Federal Government's healthcare website was not nearly as bad as I thought it would be. I managed to log in, answer all the questions, and decide on my coverage in less than an hour. Of course, the same cannot be said about the health insurance company who is taking their sweet time to send me my insurance information!

All in all, I have been fairly lucky when it comes to dealing with the disability minefield. One of the upsides of having a terminal illness is that I only got hit with a little bit of shrapnel, but I can see why people might get annoyed and frustrated when they are attempting to get their disability approved. It seems to me that some of these rules are detrimental to the health and well-being of the individual applying for disability. At minimum, they need to eliminate the 24-month Medicare waiting period. Ah, well, I suppose it could be worse.

Decision Made - Next Steps (A Cancer Update)

As everyone is now aware, I have a big decision to make on what to do about my recurrent cancer metastases (see September 2 blog), but to sum up the choices: same chemo treatment from last year, Tamoxifen, Bevacizumab, or nothing. I have made my decision. Truthfully, I made this decision months ago about what I would do if the nodules started to regrow, but faced with the actuality, I did want to give it a couple of days to see if I still felt the same way. I do. Here's my decision:

I will not be seeking any further treatment for my cancer.

I do have my reasons and they are plentiful, but it boils down to the following - I want quality of life; not quantity. I've earned it and I deserve it. Instead of holding off the inevitable, I intend to make the most out of what life I have left. Some people will disagree with my decision, but that's not my problem. There's a quote from the 1995 remake of Sabrina, which expresses my sentiments: "More isn't always better...Sometimes it's just more." I don't want to spend the next few months or years feeling sick and suffering horrible side effects for treatments that aren't a cure. If I had a spouse or children, I might feel differently, but I don't have either.

What are the next steps? Believe me, I do have a plan. 

• Hand in my resignation for work (tomorrow)
• Find a new home for my sweet baby girl (anyone want an amazing cat?)
• Apply for disability
• Sort through and get rid of any personal items that are unnecessary (yearbooks, scrapbooks, photos that are only of interest to me, etc.)
• Sell all possessions (apartment furniture, books, tchotchkes, etc.)
• Cash in all retirement accounts
• Prepay for cremation 
• Get out of my apartment lease
• Find a crash pad (probably my brother's house in Philadelphia, but am open for suggestions)
• TRAVEL!!!!

The last one is the biggie. My plan is to spend as much time as I can -- while I still feel well enough -- to travel to places I have always wanted to go and return to some of my favorite places. I would like to spend a couple of months traveling around Europe. Just a short list of places that I plan to visit are: Edinburgh, Glasgow, London, Oxford, Stonehenge, Dublin, The Blarney Stone, Amsterdam, Prague, Paris, Vienna, Salzburg, Barcelona, Venice, Florence, Rome, Naples, Malta, Athens, and anywhere else that my heart decides to go (the "red" cities are places I've been to before but want to revisit). My plan is to use my blog as a travelogue for everyone to follow along with my adventures.

Once I've finished my Grand Tour of Europe, I'll return home where I plan on having a couple of ... well, let's call them Irish Wakes in which the deceased is present at the party. I'd like to bid a fond farewell to my friends and family by holding a couple of strategically placed parties. I'd like to also plan a trip to the West Coast (LA area) in order to see my friends who have deserted the East Coast for warmer climes. 

While these plans are merely in the initial phases, I believe that all of these items can be done before my health starts failing and I eventually meet with the grim reaper. Again, I ask for everyone's support with the decision that I have made. 

Weighing the Options - A Cancer Update

As I mentioned last week, I've been having some minor cancer-related health issues and had a CT scan last Friday. Today, I received the results from my oncologist and it's not great news. Of the two significant sized nodules - both have grown. One of the two has doubled in size from .5 cm to 1.0 cm. Plus the radiologist noted that there were "some" new nodules. What does "some" mean? Neither my oncologist nor I know. Are there 3, 4, 15 new nodules? 

With the growth of existing nodules and the additional ones, I have to make a decision on my options moving forward, which are:

1. Go back to the chemotherapy treatment that I did last year in the hopes that it will reduce the size of the tumors (again).
2. Take an anti-estrogen drug in the hopes that it'll reduce the size of the tumors.
3. Take an antibody chemotherapy drug in the hopes that it will slow the growth of the tumors.
4. Do nothing and let nature run its course.

First off, let me say that the treatment options at this point are palliative. There is nothing that is going to cure this disease. Right now it's all down to how much time and/or what quality of life I want to have. 

Quite frankly I have little to no interest in repeating the chemotherapy treatment from last year. People who have never been through chemo will always say "do the chemo" but it's a horrible way to spend your time. I hated it and swore that I would never do traditional chemo ever again - twice was twice too many. My oncologist gave me literature for the other two options and I'm not too enamored with these options either. Both have a bevy of annoying side effects: nausea, nose bleeds, exhaustion, muscle aches, pain, vomiting, diarrhea, etc. The anti-estrogen drug is the same drug (Tamoxifen) that I took 6 years ago after my bout with breast cancer and I think it's one of the reasons why I now have endometrial cancer. Major medical issues with Tamoxifen: endometrial cancer (too late), stroke, and blood clots in the lungs. Hmmmm... The antibody drug (Bevacizumab) has an interesting medical issue for lung cancer patients: sudden and severe lung bleeding! WTF! The treatments are worse than the disease, but the idea is that if either drug works, it would extend my life expectancy by perhaps 2-3 years.

In case anyone is wondering, I'm leaning toward number 4, which would give me a life expectancy of approximately one year. Now, this is my decision to make and while I appreciate any advice that people want to give, understand that I will do what I feel is right for me. I'm going to take some time reviewing my options and the literature before I make my decision and no matter what I decide, I expect that my friends and family will respect my decision.

As for the breathing pain that brought me to the doctor's office in the first place, the oncologist thinks I probably had some mild irritation in the pleural cavity (pleurisy), which has since cleared up. That is normal for pleurisy.

A Pleural What? (A Cancer Update)

There's an update on the cancer front. It's not much of one, but I thought I'd fill everyone in on the latest and greatest. 

Last Friday, I noticed that I had developed a sharp pain on the right side of my abdomen (right under the bottom of my rib cage). Mostly I didn't notice the pain too much except when I took a breath... so yeah, a lot! If I took a deep breath, it was like someone stabbed me with an ice pick. Not fun. All weekend long, I had that pain in my side continually. The pain level was annoying but not overly distracting. I thought perhaps I might have pulled a muscle, but that didn't seem quite right. Last night, as I was heading off to sleep, I rolled on my back and it was like someone took an axe to my abdomen. It was seriously effing painful! I almost went to the ER, just because it was so painful. Before going the expensive ER route, I took 4 ibuprofen to see if it would dull the pain and after an hour it was back to the ice pick pain.

It occurred to me that it might be pleurisy (the inflammation of the lining of the lungs) or a pleural effusion (the build up of fluid around the lungs). Not life threatening, but pretty flipping painful. Why did I think it might be one of these diagnoses and not a pulled muscle? You see both pleurisy and pleural effusions can be symptoms of the metastatic lung cancer. About half of all cancer patients develop pleural effusion. Joy! It occurred to me that the little bastards in my lungs might be waking up. The symptoms of pleural effusion are: shortness of breath, dry cough, pain, feeling of chest heaviness, inability to exercise, and malaise. Would you like to hazard a guess as to how many of these symptoms I'm experiencing? If you guessed all of them, you win the prize!

In order to know for sure, I called my oncologist's office this morning to see if I could get a quickie appointment. Fortunately, the office was able to squeeze in an appointment with the nurse practitioner (as my doctor was not in the office today). She did a basic examination and heard the muffling in my lungs and concurred it might be a pleural effusion. In order to know for sure, it's time for another CT. It was almost time for my next CT anyway, so it's being moved up a week or two. No big deal. 

On Friday morning, I head off to the hospital for blood work and a CT. In the meantime, I've got painkillers to help with the pain. I'll have the results next Tuesday, September 2. 

Stay tuned!

The Next Three Month Checkup... (A Cancer Update)

Has it really been three months already?  If you remember, I provided a cancer update on March 4, 2014. It's time for another.

Today, I met with my oncologist to discuss my most recent test results. This time I did not have an MRI or a CT scan, but instead had a CA 125 test.  What is CA 125 you ask?  Good question.

The CA 125 (Cancer antigen 125) is a protein which is a so-called tumor marker. Apparently this protein occurs in greater numbers when there is a tumor present. The most common use of the test is the monitoring of people with a known cancer that elevates CA 125 level, which includes ovarian, endometrial, peritoneal and fallopian tube cancers. In someone who is known to have a malignancy, the CA 125 level is periodically monitored. A decreasing level generally indicates that therapy, including chemotherapy, has been effective, while an increasing level indicates tumor recurrence. Small changes are usually not considered significant. A doubling or halving of the previous value would be important.

Normal levels for CA 125 is less than 30 U/ml. Good news, my level is currently at 16 U/ml, which is about the same as the last time it was monitored (15 U/ml). What we take away from this result is that more than likely the lung nodules are still stable.

What happens next? It's another 3 months of waiting. Joy! In September, I will have another CA 125 test and CT scan. Until then, life goes on.

For those of you who wondered about the never ending headache that I experienced from January until March, I don't actually have an answer.  One day, it just went away and never came back. <shrug> C'est la vie!

The Three Month Checkup... (A Cancer Update)

Here's the latest on the cancer front:

As I mentioned a couple of weeks back, I needed to get an MRI to check to see if there were brain metastases because of a never-ending headache. In addition to the MRI, it was time for my 3 month cancer check and another CT to see what was going on with the lung nodules.  Saturday, February 22nd, I had an MRI of the brain and the following Tuesday, on the 25th, I had the CT of the chest and abdomen. Today, I met with the oncologist and got the results.

Good news all around.  The lung nodules are currently stable and have not grown. The MRI shows that there are no metastases in the brain. The only problem remaining is that I have no idea what is causing my now 37-day persistent headache.

Next steps:  Go to the eye doctor for a checkup. Perhaps the headache is eye strain because my prescription has changed. If that's not the problem, then it's on to a neurologist to see what might be causing the headaches. Of course, my brother thinks he knows the solution to my headache: "I think I know what the headaches are from. Students. It's my non-professional opinion and belief that you are allergic to stupid students. I know I have a similar reaction to children, stupid people and commitment. I break out in the punching of faces. It's a muscular tick."  He may be onto something, except I don't really have any stupid students.

As for the cancer portion of my medical issues, it's another three month wait until the next check on the lung nodules.

The Never-Ending Headache! A Cancer Update...

I didn't think I would be posting a cancer update this soon as it is not quite 3 months since my last update, but...

On Monday, January 27, I woke up with a headache and it has been with me ever since! I fall asleep and it's there. I wake up and it's there. It's like carrying a permanent piece of luggage around. At first, I didn't think much of it. While it is not a debilitating headache, it is annoying to have this constant pain. On a pain scale of 1-10, it's usually around a 4. It's a tension-type headache - meaning that it creates a band of pain around my head.

I thought perhaps that it was a sinus infection, but the symptoms are all wrong for sinusitis.  Then after a day or two, I thought it might be a water enhancer I was using, which was sweetened with sucralose. Side effects of sucralose for some people are headaches. I cut that out of my diet and still the headache remained. After day 11, I started getting concerned, mostly because the headache is not the only problem that I have been having. Adding to the painful head are dizzy/vertigo spells, phonophobia, neck pain, and mild depression. Joy! All of which are side effects to brain tumors. Now, I am not saying that's what I have. I'm saying that among other things, it could be brain metastases.

The three places that endometrial cancer most often spreads to are liver, lung, and brain. As we know, my cancer has already spread to my lungs, but my brain had never been scanned. Naturally, I start thinking the worst. After a couple of days of playing telephone tag with my oncologist, I finally just made an appointment to see her. Today, I met with her and she decided that it would be wise to schedule an MRI to rule out brain mets. Unfortunately, the hospital was unable to get me an appointment for a brain scan until Saturday. I will have a further update after the scan.

Until then, think happy thoughts and hope that it's not the worst case scenario.

Latest Cancer Update...

As I mentioned a couple of days ago, today is the day that I received my latest CT results.  There is (mostly) good news:

While I am not "cancer free", the nodules that remain have been severely reduced. There is one nodule (a 3mm sized one) that has not changed since treatment began which means that it's probably benign. The other nodules have been reduced from the September scan by about 60%.  A 5mm nodule is now 2mm, etc. 

What this means moving forward is that in 3 months, I will go for another CT scan and we will see if there is any growth. If so, the doctor would recommend a new course of treatment or a clinical trial. I, of course, will weigh my options and decide whether or not to move forward with any treatment. Meanwhile, it's a waiting game.  

Quite frankly, I'm fine with not having to deal with or mention cancer for 3 months. I'm kind of over the whole "I'm a cancer patient" thing. It's truly annoying. So as Andy Dufresne (played by Tim Robbins) said in one of my all-time favorite movies, The Shawshank Redemption: "Get busy living, or get busy dying." 

End of Life Options...

What if you were told that you only had 3, 6, 9, or 12 months to live? I don't think it will come as a shock to anyone that I often contemplate this question. Over the past few days, it has been on my mind nearly continuously. This past Monday night, I had my latest CT scan and am awaiting the test results, which I will get next Tuesday when I see my oncologist. Let me tell you, the wait of 8 days between scan and results is annoying!! Fricking holiday weekend.

My thought processes since Monday night: What will I do if I'm told that the tumors have grown and/or returned? What if I suddenly have tumors in areas that were once tumor free? What if my doctor says that I have only a certain amount of time left?

In contemplating these thoughts, I came up with a few different end of life options, all of which have their pros and cons:

1.  Keep doing what I'm currently doing - working, paying bills, etc.  As a friend said to me, how many times have people been told that they only have months to live and end up living for years or decades. Problem is right now I have very little interest in what I'm doing because it's uber-stressful and not very much fun. In fact, while doing some research about stress and cancer, "stress has not been proven to initiate cancer; however, there is ample evidence suggesting that chronic stress can activate certain signaling pathways that can promote tumor growth, progression, and metastasis" (MD Anderson website). That's just great. I have probably one of the most stressful jobs and undergoing cancer treatment at the same time. I should just quit right now.

2. Take all my retirement funds, max out my credit cards, sell everything I own, and spend the time and money traveling to all the different places I've always wanted to see. Maybe do a road trip across the US. While this option is probably my favorite, it has two very distinctive drawbacks: money and loneliness. I don't have all that much money in my retirement funds and selling all my property won't get me much more, and travel is costly! Also, I would get really lonely traveling by myself; therefore, I want to have a traveling companion, but I don't have anyone who would be able to spare the time.

3.  Get working on ticking off everything on my bucket list. This option has a similar problem as option 2 - money. Most things on my bucket list are pretty pricy. It's part of the reason why I haven't been able to check off items on the list.

4.  Do something really good with my last few months - go work in an aid camp in Africa, help rebuild Haiti, help educate children in an underdeveloped country, etc. This choice is probably the most viable. It wouldn't cost me much as I'd volunteer to work with an International Charitable NGO and at least I'd feel I was doing something worthwhile in my final months.

5.  Spend the entire time on my couch, reading every novel that I've ever want to read.  Again, this option is pretty viable too, but it might get really boring after a few months. Of course, I could combine the reading with the traveling or charity work.

Oh, add to all of these choices to stop worrying about eating healthily. I mean really, what's the point!  These were all the choices I came with. Did I miss any? What would you do if you were given a finite number of months to live??

7th Chemo Treatment Doesn't Happen...

This morning, I arrived at the oncologist's office fully intending on spending the day being pumped full of toxins which I was hoping would be my last treatment. Turns out that didn't happen! Not that I received good news. What I did receive was unsurprising and extremely honest news from my doctor.

As is customary, I had some blood drawn and my vitals checked before meeting with the oncologist. All were normal and I've lost 18 pounds. The doctor came into the exam room and we got to talking about my symptoms - particularly the latest and greatest one: mouth sores. The minute the doctor saw and heard about these sores, he decided not to proceed with the 7th treatment and explained his reasoning.  Here's a summary of our conversation:  

Seven treatments is a pretty arbitrary number that studies have shown to be most effective for my particularly brand of cancer. Then he went on to explain that my cancer is not curable. It's about extending my life and not eradicating the cancer. While the treatment has been effective, it's just a matter of time as to when the tumors will resume growing. So for now he wants to stop the treatment because of the extensive amount of side effects that I'm having.  His thought process is that every three months I should have a scan and see where the nodules are and then after that figure out what the next treatment might be. Either a continuation of the current treatment, or something new, or perhaps a clinical trial. (Or as I might decide, no treatment at all and just let nature run its course.)

I must say it made for a nice change of pace to actually have a doctor not blow smoke up my tukhus. Maybe other people would prefer a doctor to not be fully honesty about their disease, but I am not such a person. I'd rather someone be brutally honest, than lie to me. I want the reality of the situation; not the wishes and dreams. Does this mean that I give up hope? Of course not. I would like to think that the treatment has worked and I won't have growth for 20 or 30 or 40 years, but the statistics speak for themselves. As I've mentioned there's only a 15-20% chance that I will see my 52nd birthday.

Where do I go from here?  In early December, I will go back to the oncologist (my original one who will be back from maternity leave by then) and will probably have a CT scan to see what's going on. Meanwhile, I will: continue to live my life, teach students who don't want to learn, and find enjoyment in watching the sun rise every morning.

A Cancer War Update...

For those of you who are keeping track of my cancer battle, here's the latest:  

I will be going through at least one more round of chemotherapy. According to my oncologist, "research shows that 7 rounds of chemo is the most effective for treating [my] type of cancer." Yeah, sounds like a load of crappola to me too, but I'm going with it. Ergo, this Friday, I head back to the cancer center for what will be my 7th, and hopefully last, round. After Friday's treatment, they'll schedule a CT scan to see what's going on with the lung nodules. With any luck, there will be no evidence of cancer and I can take a break from chemotherapy.

In other news, I am practically drinking all my food these days - thanks to the horrendous mouth sores. Even soft foods like yogurt and pudding are a little too harsh right now for my tender tongue and painful gums. GNC is making a fortune off of my buying their protein powder which is one of few things that I can "eat". I suppose the upside to the inability to eat is that I've now lost 15 pounds, so that should make my doctor happy. Yes, I will state it again - the chemotherapy diet is effective but I do not recommend it. 

Otherwise, there isn't much else to report. I still have fairly painful and completely annoying neuropathy which I suspect will not be going away anytime soon. Fatigue is still an issue but I can proudly say, other than treatment days, I still have not missed one day of work. Although I'm starting to wonder if that's a good thing or a stupid thing! 

That's all for now.  Stay tuned for further developments.

New Chemo Side Effect!

Just when you think chemotherapy can't get more glamorous, lo and behold, it does! I guess this time around with chemo, I'm going to get all the side effects, not just a few. Chaos has decided to throw a new side effect into the ring - mouth sores!  Yeah, it's not like I have anything else to deal with right now.

For the past couple of days, I've been having some pain issues with the soft tissue in my mouth, but I figured it would pass. Yeah, not so much. All of a sudden, today, I felt like my lower lip had puffed up, so I went to take a look in the mirror. What did I see? My bottom lip looks like someone clocked me in the mouth! I decided to call the oncologist on call this weekend to discuss this new symptom. As I was speaking with the answering service, I noticed that I was sounding like Mike Tyson after going 10 rounds with Muhammed Ali.  So yeah, as annoying as this side effect is, it's kind of hilarious at the same time.

Why does chemotherapy cause mouth sores?

"Chemotherapy...can cause mouth sores...because [chemo is] intended to kill rapidly growing cells - such as cancer cells. Some healthy cells in the body also divide and grow rapidly, including the cells that line the inside of the mouth. Unfortunately these healthy cells are also damaged by chemotherapy...Damage to the cells in the mouth makes it difficult for the mouth to heal itself and to fend off germs, leading to sores and infections."  (MayoClinic.com)

After a consult with the on call oncologist and a chat with the super nice pharmacist at my local CVS, I came home with a prescription for oral lidocaine (an anesthetic) and Biotene dry mouth oral rinse, which should help with the symptoms and pain. Additionally, I'm starting to think that I've got one in my esophagus, which should make for an interesting time when eating.

I'm a little bummed this happened because today is my school's homecoming dance and, as the Freshman class faculty advisor, I was committed to attending the dance as a chaperone. Due to this new side effect and the fact that talking is a chore, I am forced to stay home. Strangely enough, I was kind of looking forward to attending the dance. Oh well, there's always next year... unless... well... you know.