My Port is Gone but the Fight Continues!

I got my chemo port, aka Frankenboob, removed yesterday.

Here is the before picture…

I don’t have an after picture yet because it is covered in gauze and bandages.

I am very aware of how lucky I am. I saw several nurses yesterday and each one asked what my diagnosis had been. When I replied, “Pancreatic Adenocarcinoma”, I got the same response from each of them. It is the response you get from people who are familiar with this disease. Typically, people nod knowingly and say, “Wow.” Then they keep nodding quietly, because what else can you say?

Except I had one really awesome nurse who said, “We almost never do port removals for pancreatic cancer patients.” Then I was the one nodding silently, because I know the very grim statistics. Yes, I  know each patient is a statistic of one but I also know that my very small support group of online friends with PC has been rocked by recurrence and loss over a very short period of time. I know one of my friends who is fighting PC had to bring in hospice this week. Another friend lost her mom on the same day my port came out. I have other friends who are actively fighting recurrences or who are trying to figure out why their tumor markers are rising. So I am pleased to have my port out, but the bigger picture is a sobering reminder of how devastating this diagnosis is both for patients and for their families.

The five year survival rate for pancreatic cancer remains at 6% in the United States. Approximately 75% of PC patients do not make it the first year. According to the SEER website, PC is the 12th most diagnosed cancer in the US, but the fourth leading cause of cancer deaths. It is estimated that 46,420 new cases of pancreatic cancer will be diagnosed this year, with 39,590 people dying from the disease. By contrast, there will be 232,670 new cases of breast cancer diagnosed, with approximately 40,000 deaths.

If projections hold, pancreatic cancer will become the second leading cause of cancer deaths in the United States in a few years.

http://www.pancan.org/wp-content/uploads/2013/01/incidence_report_2012.pdf

I wonder why the budget for pancreatic cancer research remains so low in comparison to other cancers. Is it because the prognosis is typically so grim that many people deem it as a hopeless situation? I wish people could look at those of us who have battled the PC monster and see us for who we are. While the numbers are not good, we have not lost hope. We have a lot of fight in us. We want and need better tools in our arsenal to battle this beast. We are men and women, young and old. We are daughters and sons. We are sisters and brothers. We are wives and husbands. We are mothers and fathers. We are humans who deserve better. So while I celebrate this little milestone for myself, I am pained by what my “PC family” is forced to endure. Something has to change. Too many amazing people have been lost to this illness. Too many more will be lost after fighting valiantly. We desperately need more funding for research into ways to improve survival rates. Pancreatic cancer fighters deserve better than to be told, “We have a chemotherapy that may give you an additional month of survival, but it will make you incredibly sick in the process.” It is time to demand more research dollars for this particularly deadly illness. I know a lot of people who are cynical about “awareness”, but with awareness and attention comes money, and that is what we so desperately need.

Choosing My Battles

Tomorrow will mark three weeks since I ran the Bear Chase 50. I am still tired and my legs still do not feel 100%, but I am enjoying getting out and running very slowly with my husband and my friends. The first couple of weeks after I run a big goal race, I get into a little funk. I miss the mood enhancing effects I get from running in and of itself. I also miss seeing all of my running friends while I am forced into taking time to heal. There is often a big emotional let down that comes after a big event passes, because I have spent so much time and energy preparing and focusing on that event. I am left thinking’ “Yes, I am happy I just achieved X, but now what?”

Oddly enough, I have found my battle with pancreatic cancer this year has left me in the same place emotionally. I do battle well. When I got my diagnosis confirmed, I focused on exactly what I needed to do to get through the fight. I did experience fear, of course, but I had a goal in mind. I knew what the enemy was and I was at peace with fighting that enemy. When I was engaged actively in the fight, I felt a sense of emotional clarity. I knew what was important. I never doubted my priorities. I experienced the emotional and psychological calmness that comes with absolute focus and certainty that what you are doing is the right and necessary thing.

Now that the cancer battle and my comeback race are over, my goal directed inner voice keeps pushing me to figure out what is next. People keep telling me to “just enjoy” life right now. But part of enjoying life for me is having goals. It gives me a sense of purpose to focus on something. I love the thrill of a challenge. I have a bit of a sensation seeking personality, and channeling that sensation seeking into positive risk is a psychologically healthy thing for me to do. People think running long distances makes me crazy. I think running long distances keeps me sane.

My dilemma is, I am having trouble clarifying what I really want to do next. I am three weeks out from my last race. My body and my mind and still in rest and relaxation mode. I do not want to make a decision about what is next until I am good and ready. However, registration opened up for a race this week that I had planned to do in 2014. The race took place the weekend after I finished chemotherapy, so I did not run it. My intent had been to make it my big goal race for 2015. It is a 100 mile race, so this is not a commitment I can afford to take lightly.

The day it opened, I felt compelled to sign up. I have wanted to run this race. It means something to me. I have friends who plan to be there. My husband gave me his blessing. But for some reason, I just am not ready to make the commitment. I am not afraid of the distance. I have done it once before and it was challenging but I had a great experience. Rather, I am just not sure if I am ready to take on that big of a commitment right now. I am tired. I am emotional. The answer is not clear to me and I cannot make the decision. If I don’t make the decision soon, it will be made for me because these crazy races fill very quickly. Maybe my indecision means something and I should listen to those doubts. However, I also know that a month from now, I may feel fabulous and then be kicking myself if I did not sign up.

As I was talking to a friend during a run yesterday, we talked about doing something because you want to do it or because you used to want to do it. I am not sure right now which camp I fall into. I like running 50 miles. I think that is my favorite race distance. Running 50 miles is a big time and training commitment, but running a hundred is a completely different animal. I loved the challenge in 2013 and am so thankful I did it, but do I want to do it now? Or is it just something I used to want to do?

Of course, in the back of my mind, I keep telling myself not to put off doing things I really want to do. I have no guarantees that I will be healthy in 2016. I think I will be, but no one knows for sure. If I really want to do something, I need to make it happen. I hate the saying “Live every day like it is your last”, because I think people use that to justify selfish and wreckless behavior. However, I prompt people in my life to think about what they would choose to do if they only had one year left on the planet. Who would you spend that time with? What would you choose to learn? Where would you go? What would you do? Those are questions that we should be asking ourselves routinely, because the answers will change depending on our life circumstances. My life circumstances have certainly changed over the last year and I am still trying to figure out what the lasting impact will be for my own priorities and values.

I Am More Than My Lady Parts

I wanted to update readers on my diagnostic mammogram, which was completed on Tuesday. As it turns out, and as I suspected, everything is fine. The radiologist even came in and checked me manually for lumps. What he thinks happened is that the breast was not completely flattened out the first time around on my screening mammogram.

I had to wait before I wrote anything. I know I was supposed to feel relieved and happy, but instead I just felt really angry. Everyone else was so relieved on my behalf. But having the second test did not make me feel any better, because I already thought I was fine. Then I became more frustrated with myself for not feeling happy or relieved. Why couldn’t I feel what I was supposed to feel?

 In truth, I just felt frustration through the whole process. I felt in my heart that my breasts were fine, but I couldn’t be sure until I went in for the second test. My husband, kids, parents and friends were all worried. I appreciate caution in the medical community and I know doctors are in a catch 22. If they miss something, they can be sued. However, over testing causes so much fear and anxiety and that is a problem, too. After everything our family has been through, my anger just bubbled to the surface and finally boiled over.

For the better part of 24 hours, I vented my frustrations and said a lot of bad words. I wondered why my pancreatic mass had been written off as nothing for so long, while the first hint of anything in breast was treated with such an abundance of caution. I thought back to when it was first recognized that my pancreatic mass was actually potentially bad last year and how  my insurance company continually rejected requests of my doctor’s, while simultaneously sending me reminders to get my Pap smear and my mammogram. Oh, the irony! My lady parts are not the only part of my body and they are currently not trying to kill me, but my insurance company seems to think that they are the only parts of me that matters.

After my test, I called my husband at work and let my anger and frustration fly. He was honestly confused and bewildered. He wondered why, after everything I have been through, this scare was the thing that finally brought out my anger. It was just the thing that tipped me over the edge. I held tough for so long, and finally just got furious. I do not like being afraid. I do not like scaring my family. I am more than my breasts and cervix, thank you very much, insurance company and society!

Please make no mistake. I love my lady parts and they have served me well in life. I enjoy having them and do not want anything bad to happen to them. I also love my less sexy but no less important digestive system, of which the pancreas is a really important part. The pancreas helps digest food by making pancreatic enzymes and regulates blood sugar by making insulin. It is a really important organ. In fact, it is kind of two organs in one, so it is pretty amazing! It is no less important to me than my breasts or my vagina.

So my anger colored everything for 24 hours. I could not sleep. I was upset with my husband for not understanding why I felt the way I did. I was angry in general for being put through days of not being positive I was fine. But then I started thinking about how as much as I do not like feeling scared, I also do not like feeling angry. However much time I have left, whether it is a year or another 45 years, do I want to spend my time being an angry person? I get to choose how I feel about things and the answer is clearly no, I do not want to be an angry person. As simple as that sounds, the anger started to evaporate when I thought about it in terms of being a choice.

This is not to say that feeling angry is all bad. I WAS angry and I really needed to get it out and off of my chest. If we do not allow ourselves to experience our emotions, they will come out eventually and inappropriately. But if I allow that anger to consume me, then ultimately I am allowing circumstances to rob me of my joy. I will not let that happen. I have fought hard to not let cancer win the emotional battle and I am not going to let this scare win now.

So onward and upward. My chemo port was supposed to come out October 7, the day of my second mammogram. Now it is scheduled to come out October 21. That is a day I am looking forward to with great happiness!

I Think My Body is Trying to Kill Me

I am starting to wonder if the cells in my body are conspiring against me. I was supposed to have a nice restful week after my 50 mile race last weekend. As expected, my hamstring has been bothering me, as has a hip flexor. I went for a few short, easy walks this week to loosen up. I also scheduled a couple of doctor appointments because I realize it is important for me not to take my health for granted.

I had a screening mammogram on Monday, had a physical on Wednesday and a port flush on Thursday. I am not an alarmist about things like breast cancer. I do not have any immediate blood relatives with breast cancer, so I have assumed that my risk was pretty low. I also know heart disease remains the number one killer for women. I figured cholesterol and blood pressure checks were a more important part of routine health care in my life.  I went for a baseline mammogram the year I turned 40. I am now 45 and have had three or four mammograms. Honestly, I cannot remember how many times I have gone in for that particular screening, only because I have not been concerned about it. I think I may have skipped one when I was 41 and then went the next two years. I skipped last year because I was dealing with my pancreatic cancer. I figured I should go this year, though I was not concerned about it at all.

My relaxed attitude towards mammograms changed when I got a call on Thursday saying that I needed to come back for the diagnostic mammogram and an ultrasound because of a spot the radiologist was concerned about. I know there are many, many false positives. I know this very likely to turn out to be nothing. But last year I was completely convinced that the spot on my pancreas was nothing. I wanted to skip follow up testing, until a friend in the medical field convinced me I needed to go in.

So I felt disbelief when I got the call, and then fear, and then anger. I never, ever got angry after my pancreatic cancer diagnosis. Getting the bad news phone call this time around just made me furious. I told my husband, more than fear, I am just pissed off. I do not want to have to go through this uncertainty again. I do not want my family to feel fear again. I just heard the words “no evidence of disease” at the very end of August. My family’s very tenuous sense of security and safety is thrown into doubt once more and it just infuriates me.

I know this will most likely turn out to be absolutely nothing. My oncologist called to reassure me of the very high false positive rate. But until I hear for certain on Tuesday when I go back in for testing, I just do not know for sure. I have heard from so many women who have been called back for extra screening that turned out to show all was well. Of course, there are many women who got called back and it turned out to actually be cancer. While one missed case of cancer is obviously devastating, the number of false positives concerns me. It seems like many women are going through a whole lot of stress and anxiety over things that show up on their screening tests that turn out to be nothing. I am glad there are diagnostic tests for breast cancer, but I just wonder why the screening process is not more accurate.

Of course, I am all for screening, and I really wish I had been sent for further testing many years ago when my pancreatic cyst first showed up. That was determined to be nothing of clinical significance, when it turned out that it was actually quite significant. I am hoping that the over abundance of caution given to my mammogram will turn out to be unfounded. Given my recent history, I cannot afford to take anything for granted. So I will have extra testing done on Tuesday and hope that my suspicions are correct and that the mammograper will tell me my breasts look awesome and send me on my way.

The good news for the week is that according to my physical, I am in great health. I had a heart rate of 43, my cholesterol was excellent, and other than slightly elevated blood glucose, everything was fine. Since I only have part of my pancreas, I will have the blood glucose test repeated to see if this was a one time thing or if it is part of a trend. My hope is that I get good news on Tuesday so I can focus my energy on healing up and getting back to running. Are the cells in my body conspiring to kill me? Of course I do not actually think that, but hopefully I will know for for sure on Tuesday. For now, I will just remind myself that I have already looked the monster in the eyes and fought it off. I can handle whatever gets thrown at me this week.