Archive for April, 2013

More lessons….“You don’t get to choose if you get hurt in this world, old man, but you do have some say in who hurts you. I like my choices. I hope she likes hers.” From “The Fault in Our Stars”, John Gree

April 27, 2013

There are doctors who will help, but you just have to keep reaching out. This past week was consumed with all things birthday combined with all things cancer. I decided no matter how much side effects I experienced or how much I was having a potty party, I would escape to talk, email, see, or text friends or family. My windows of freedom are teeny tiny, but I was going to put my best foot forward (now almost healed from that damn chemo drug).

Back in 2010, I had my tumor analyzed by different companies to find out which drugs could kill my cancer. This was in a lab setting, so you had to keep in mind that real life was different. In doing so, I met a wonderful doctor/scientist over the phone who was so puzzled with my case that she said she wanted to continue to be informed. Thanks to my rock star husband who says he has chemo brain by proxy, but I think his brain is still working at 150% of normal capacity…he continued to send scans, reports, etc…well, we had a conference call this week with the doctor. (Dr Laura, from the Clearity Foundation). She told us she lives, eats, breathes science or more specifically cancer in her days off and she was talking about me at dinner. Besides acknowledging Jim and how hard it must be for him to go through this journey by my side (no one usually acknowledges Jim since it is most often about ME! I am even at fault here!), she said she has been there with me the entire time. She also apologized for science not being able to give me answers. This frustrates her that my cancer is so crazy. We discussed the drug that was added and talked about more ideas. Although she isn’t an oncologist, she understands the mechanisms of the drugs and how they are supposed to work. Plus, she worked on developing a drug very similar to the one I added. In talking about my history and what we have done, I realized some mistakes were made by me and my failure to clearly understand and communicate. My doc did listen to me and does listen to what I say. I was the one who didn’t want weekly chemo. I also know my cancer responds to a drug for a while and then marches on. This is the pattern from all the data that I have kept over the years. With my tumor marker still being so high paired with a not-so-pretty picture from my scan, there is little wiggle room. I need to get out the big guns and get the cancer in control. Jim and I conclude a swap must be made. I must communicate clearly that I am no accepting of stable disease at this level and must make every attempt to have a drug to kill more of the cancer. I know this is critical for survival. Understanding the behavior of the cancer as best as I can and understanding my wishes, I must continue to be simple and clear in my explanation to my doc. No offense to the local oncologist, but I am not an average cancer patient that needs to follow the average protocol for the average cancer patient. Honestly, most patients no matter the disease really need to be understood and treated individually.

So, after the blood tests at Hoag Cancer center, I was good to “go” to UCLA for chemo. Especially since I had taken one too many shots to boost my white blood cells (I know this because of the excruciating bone pain that I have come to accept as another side effect of living with cancer). My white count was out of the park. This always confuses me since it says, “immature cells”, so I guess I should really still live in the bubble, but I usually don’t follow that rule. At UCLA, my doc was ready to do the “fly by” as he greeted the many cancer patients in their pods. He had his side kick newbie with him (Fellow/intern/way to smiley for oncology like either he had terrible gas pains or he was in fear of these cancer patients). I told them both to grab a chair and started waving my white paper with my new strategy written on it. They both smiled as we took control of my cancer care. Of course, I was not suggesting chicken liver infusion to cure my cancer. I had a chemo drug listed which I had taken in 2011 and know that this drug is currently being used with the weekly chemo I am already on. He thought it was a good idea. I didn’t hear most of the rest of what he said as he had to mention the side effects of a drug combination. All I heard was the voice of Charlie Brown’s teacher, “blah, blah, blah….” My nurse did agree that  I had to hit the cancer hard or it gets out of control.

Despite the best of beliefs that I am “fine” and my chemo brain is not gone, I had an online shopping incident. At least, I did not order the same items over and over again. I decided that I needed make up and underwear which could be easily purchased online. Unfortunately, I somehow decided that shipping my underwear to my father was a good idea. So, needless to say, I am limiting my online shopping until fully supervised by Jim or Alex. Having a foggy brain is something that I am now used to. I am just off my game a bit. Instead of misplacing items, I just completely forget what I was doing until hours later. A forgotten piece of toast in the toaster or various glasses of water throughout the house or half eaten apple or piece of cheese are just some of the misplaced items on my treasure hunt throughout the day.

Besides my lesson of the week to continue seeking out doctors or anyone who can be on your cancer team, just by asking, I am reminded how people respond to me living with cancer. There are those who don’t want to mention the elephant in the room, and that is okay. There are those who still need to communicate stories of what worked for friends or family. There are those who still have to tell you about a relative who died from cancer. There are also the few who completely understand and get “it”. They call, text, or email and understand when the pain is so deep and raw or living with cancer tomorrows is often scary. These few expect nothing in return and allow me to be the new me. They laugh at the old me and laugh about stories of my ole’ days of the crazy multi task obsessed possessed moments. It is the reality of the puzzling few who don’t understand even when I demand to be heard or hammer the truth of the viciousness of cancer into their ears. They cannot be there or go there or listen. Acceptance is the answer, but I cannot help to question. Is it their selfishness that cannot allow them to see the truth, is it their fear, is it their immaturity, and is it their lack of life experience? My old self had held the bar high and had a policy of zero tolerance for those who didn’t walk beside me. My new self (besides taking control of my cancer swapping drugs) must take control and swap those people with the many others. Am I disappointed? Of course, I think that is human nature. It becomes the shock of reality of who really has your back and despite the kindness of heart who will be unable to be there especially in difficult moments. The reality of the warm embrace knowing there are many who constantly have me in mind whether in thought or prayer or in laughter of what things used to be. In my old working days, I was all about what motivated each person to come to work and understanding each person’s motivation. I know that no amount of cancer will awaken these few. This lesson is all about the many that support me from near, far, and everywhere in between. The gratitude and appreciation is something I cannot fully express. I can only hope that you know how much each of you means to me. Each of you gives me strength to face the day.

Yes, there are those who do and live while others continue to focus on the small unimportant things or stress over all the little things which simply don’t matter.

 

“You don’t get to choose if you get hurt in this world, old man, but you do have some say in who hurts you. I like my choices. I hope she likes hers.” From “The Fault in Our Stars”, John Green.

Control the Cancer and walk a day in my shoes

April 22, 2013

After the special scan, I managed to report the incident of the corkage for my portage to the manager of radiology. Luckily, he did have a sense of humor especially when I mentioned that the Nurse A stole the badge of a real nurse and was actually a worker from the cafeteria. Honestly, I have talked to Hoag cafeteria staff and I think they have more compassion and skill than Nurse  A did. He did mention that I must have thought I was at the Kmart of hospitals. I mentioned that if I did bring my own supplies for the corkage of my portage, would I get a discount for my next scan? It was all fun and games, but he expressed many apologies and said to call him whenever I go for another scan. I will make sure to do that. I did get my results prior to talking to my doc who was not available until Thursday morning. So, on Weds, I had to deal with some nurses translating my scan and then new challenges of getting my chemo since my blood was .12 off of the limit for chemo. The doc agreed to give the chemo if I would get a shot to boost my white cells for 3 days. The chemo infusion which is only 30 minutes was a 4 hour process. I talked to a nurse who has 3 boys since she completely understood part of my motivation for Alex. We talked about the love of a son for his mother and some funny boys stories. Then, I was off to face the night of waiting. Don’t get me wrong, I feel very fortunate to have the doc that I do. I know my waiting game is far better than most patients, but this process seemed all wrong in this day of technology. Having the report of my scan and trying to analyze why I would have to wait one more day for answers for a scan I had on Tuesday, I felt frustrated and almost angry. My imagination got the best of me even when I convinced myself that the factory of UCLA was keeping my doc extremely busy and most likely there was a patient worse than me. I couldn’t help, but to break down and cry. My crying was more like the horrible gut wrenching sobs of an animal. Jim calmed me down as he always does since he is my rock star.

So the scan news: the cancer is blanketing the colon both left and right side (more left than right), cancer in front of the liver and some on top, and two spots in my right breast just for good measure. No one seems to care about the breast because of the blanketed colon. I say a small YIPEE for no cancer in the lungs.

Warning for those who don’t want to read about potty talk: stop here. All docs and nurses main focus is for me to have a bowel movement. It was made clear that without a bowel movement, this blanket squeezes the colon and prevents it from doing its job. This could be a serious issue and mean surgery. Many nurses and my doc explained this to me over and over. I have become a 90 year old focused on prunes, stool softener, fiber pills, veggies, and any other remedies both prescription and non-drug. Since they all frightened me so much, I could barely leave my house and was almost late to Hoag Cancer Center this week. I think I got this pooping thing handled.

The goal or plan is to control the cancer. I told my doc of my fear of being behind the cancer game. I really am not enjoying this phase. He gave me a couple of options and one is immediate to add another chemo to see if it can control the cancer spread or even stop or even reverse it. Much is unknown as usual. If that doesn’t work, I can add another chemo drug which would be very hard on my blood and it is unsure if my bone marrow can tolerate it due to 3 years of chemo. My bone marrow keeps surprising me, so I am still counting on it doing a good job! This chemo has no data for my cancer and has a slew of side effects. What else is new? I talked to the pharmacist about the new chemo we are adding and he tells me it is a purple/grey medicine that causes 590 side effects including skin color change and hair color change. I ask him if my skin will be purple/grey or my hair will turn purple. He couldn’t answer the question and I’m sure I can find the answer on the Internet. Come on drug companies…is it too much to ask for youthful skin instead of a new skin color and new weird hair color, plus hair loss (that is confusing). I can only think of me growing a purple mustache because nothing ever is normal with these drugs. Yes, these drugs cost a ton of money plus all the FDA approval and the goal is to kill cancer, but isn’t there some brilliant young scientist who can add a few positive side effects to chemo drugs?

I used to be the person who really cared about how I looked when I left my house…whether my hair looked good, make up, clothes, shoes…oh how I love shoes, but now I am just happy to be alive. My hair is what was left of an old man comb over, and I am too tired to do the wig. Hats have become easiest to throw on. My feet are still healing from that damn drug I tried in February so now sneakers or clogs are the only footwear I fashion for myself. My clothes must be comfortable and easy to pull off and on for the multiple weekly port access for blood draws and pulling down my pants with one hand while pulling an IV pole to/from the toilet. No necklaces due to port access and few bracelets due to Hoag hospital bracelets. I used to make fun of the pajama chemo patients, but hey I have an excuse since I have been doing this for 3 years in a row. They are putting on pajamas initially and not getting to the real clothes phase. I can only think of my task at hand and there is no time for my accessorizing.

This weekly chemo cancer job is taking up every day now. I find myself conflicted between happy to be here and not having enough free time. It makes the free time all the more special. I am so thankful that I have some options to try and my doctor is still searching along with my fake Dr. Jim still searching during his every waking and non-waking moment. I feel fortunate that I have so many on my team cheering me on. This week I received a card from my internist and all her staff signed the card with a personal message. I definitely feel the love and it keeps me going. I still cannot help myself to say that it is annoying and frustrating. My wishes and hopes change as this ride continues, but one thing remains the same…don’t get caught up in things that don’t matter (that is a personal thing for what matters to you) or really don’t sweat the small stuff. I bet if you walked a day in my shoes, you would really see things differently for yourself, your children, your family, your friends….I will continue to take things day by day and hoping for control of the cancer.

 

 

Corkage fee for port access, not every oncologist is the same, patient rights and the ride continues

April 17, 2013
First, I am still awaiting my results from my scan from yesterday. Let’s just say that the scan went a bit into uncharted waters which is saying a lot since I have been doing this 2010. When I arrived, I was met with a favorite technician, but then things went off track. I had my power port card (VIP card that comes with your port after surgery plus the free booklet and bracelet). I should have gotten a clue when the technician told me several times to show the nurse my VIP card. I have memorized the info and have been fully educated by my UCLA nurses on gauges of needles. I saw the needle which was larger than what is normally used plus the adhesive bandage is something I am now allergic to. I asked the nurse and told her of my allergy and she kept saying that this was all they had. I explained that I cannot have that bandage, but she ignored my request. Meanwhile, I noticed that I was sitting in a pool of my own blood as she forgot to cap the line. I asked for paper towels, but she was arguing about pulling of the adhesive that was now causing itchiness. Great, just how I wanted to start my scan: bloody and itchy. Then, my favorite tech returned with his face in shock and got the paper towels and put the cap on to stop the pool. I demanded a new nurse and told them that I was going to walk over to the cancer center dripping blood so I could get the paper tape. After this, nurse continued to debate me, so what else could I do is cry and demand for my hubby. My favorite tech, ran to get another nurse since he knows I cannot sit still for hours with a rash on my chest spreading to my neck. Of course, nurse B said it was only a bit red. Last night, I saw the rash grow as I told them it would, but who am I ? Just the patient! After calming down with the help of my fav tech who knew if he brought Jim in that we would have left! Especially if Jim saw the pool of blood on me….he would have assumed a crime scene gone wrong instead of a simple scan procedure. Thanks to my tech, all proceeded. Nurse B changed adhesive to paper tape products and crime scene was cleaned of all evidence. After the scan, fav tech asked me a zillion questions as he said to get as much info for the radiologist, but we did our analysis paralysis (what our family is famous for) and came to no conclusion. Nurse A decided that she should dispose of my radioactive line in the sharps container (okay very frightening), but tech saved the day. Then to top it all off,nurse A told me that next time I should bring my own needles, bandages etc…because this scan is a BYOS (bring your own stuff) and then they will only charge you a corkage fee of $500 to access your port??? Come on Nurse A? Again, I think of other cancer patients who get this type of scan. am I the only one to get the ignore the rights of a patient treatment? You know what I will do with this info…oh yes, COMMENT card time and yes, I have names of all involved.
While waiting for results and sending numerous emails to my doc, he did call to explain that this new doc who is arranging for my chemo at Hoag cancer center only goes by the book. There is no personalized approach as she treats the average patient.I know by now that a stage IV, 3 years of treatment should not be treated like an average patient. So, I don’t know if I will be able to get chemo and this doc thinks it is better to look at one number than the whole picture of me as a patient. I am not following the logic, so it is better to have my cancer get worse than take a chance and give me the chemo based on my number being off by .03 ???? Plus, they can give me a shot to stimulate my counts, but instead it is better to have my cancer grow and I should become sicker? How does this make sense. Again, this is why you must find a doc who hears you and understands you and looks at all of you as a whole patient. I don’t need these extra bumps in the ride. I do have a wonderful internist who will override and do what I need with just a word from my doc. Does this always have to be so difficult? Again, what do the other people do? Is this why the statistics are so poor because many just give up the fight for their rights or aren’t lucky to have a doc who will fight for them? Pain, frustration, and suffering aren’t just side effects of chemo, but the side effect for fighting for your rights as a patient. My fight continues as I am off to try to get chemo at Hoag Cancer Center…

“Hope?” he says. “There is always hope, John. New developments have yet to present themselves. Not all the information is in. No. Don’t give up hope just yet. It’s the last thing to go. When you have lost hope, you have lost everything. And when you think all is lost, when all is dire and bleak, there is always hope.”

April 16, 2013

I was never a fan of roller coasters. These days I find myself just getting on this cancer roller coaster again and again without much thought.  I am off today for a PET/CT scan since my tumor marker is not cooperating and at record levels. I have done my analysis paralysis and have come to zero conclusions or answers. Do I appear yellow? Am I more bloated? Do I look worse than in 2010? What organs do metastases grow with zero symptoms? I keep asking the questions and finding that I must wait until the scan is done. My doc thinks it is “cancer gone wild” (my words, not his), so this is the reason for the STAT scan. Whatever it is, it is…

We enjoyed our Waikiki vacation and chemo in paradise is something quite different from chemo at UCLA. The nurses are more compassionate than ever about their patients and definitely work at a different pace. For the first time, I was honored to have both Alex and Jim at my chemo. Alex really liked watching sports on the movable TV and did put the food channel on for 10 minutes for me. We had beach days and even a hiking day. We ate many many meals out, so no cooking for me. We were all glad to have a mini break from the cancer job until the word came about my tumor marker. Nothing like a dose of reality to slap you in the face. Sleeping is overrated.

I don’t know if you are a fan of roller coasters and I feel guilty for asking you to ride along with me. With 3 years since my surgery cancerversary approaching, I just imagined I wouldn’t be in this place so soon and facing these unanswered questions again. I did read The Fault in Our Stars while I was in Waikiki and it is such a well written fictional story of teens with cancer. There were so many good lines which really captured the truth about cancer. Leave it to a fictional teen, to tell it like it is. I know you are probably wondering why I read the book and I don’t have an answer. Something about the story just drew me in and I couldn’t stop reading.

After my scan today is chemo again on Weds…one day at a time or now one hour at a time. There is always HOPE!

P.s. the quote above is from Alex’s reading of I am Four.

 

 

ALOHA!

April 6, 2013

I think the craziness all began at the end of January and never stopped along with the crazy cancer. This week proved to be more of the same along with a few curve balls just to ensure that we didn’t sleep too much. On Monday, I went to the Hoag Cancer center for my usual blood test to discover that the platelet transfusion did not do that much magic and my tumor marker had reached record levels beyond 2010 days gone by…This did not make sense since I thought I was feeling better especially since I resolved my constipation gone wild from the new chemo. I sent emails and made calls. I tried to analyze the numbers and it just didn’t make sense. I could even wear my bra past noon. This changed since last week the cancer around my diaphragm made wearing a bra almost impossible. Braless with bloating is not a pretty picture! Plus, Alex kept asking when the “cancer baby” was going away. We had no new answers for our patiently waiting boy who decided to tell us he was suspended from school as an April fool’s joke. Very funny Alex! Then, I went to UCLA for the next chemo on Wednesday. Luckily, armed with treats I was escorted into the infusion room fast even though they told me it would be a long long time since they were short nurses today. One of my favorites welcomed me and when we sat down, she just held my hand and looked into my eyes without words, but just an enormous amount of kindness and support. We ran the usual blood tests and again the platelets along with the rest of the blood is hanging on by a thread. My doc bounced into seeing me with a new fellow at his side. This one was too smiley, so I just ignored him. I felt him nodding his head up and down when I described how I was feeling. It was determined that after some negotiation that we would be able to go to Honolulu, but I would have to have chemo there plus a platelet transfusion before leaving. I asked many times since this drug is not the magic potion of “bye bye cancer” if I would all of a sudden have a crisis in Honolulu. My doc felt that this would not be the case especially since I would get the chemo in Honolulu. I cannot tell you how happy I was to hear that I could go on this trip. We have never needed a vacation more. The non stop cancer job has been overwhelming to say the least with visits to USC, Cedars, UCLA for clinical trials and chemo and blood tests and transfusions-OH MY! Of course, we decided to tell Alex with a little April fool’s joke and told him we were going to Ohio for vacation. He did not find it funny. We have since moved to the planning and packing phase with help from mom on the hotel app and more tips. In the meantime, the reality is that the cancer is not getting worse although it is not going away fast. I can only focus on what I know now. I am not feeling worse and am coping with the new side effects. I cannot think about tomorrow especially when it comes to this cancer job. I can think about the tropical breezes, warm sun (which I will be fully covered since chemo causes sunburn), and enjoying my family WITHOUT the cancer job. Chemo in Paradise! What could be better?  Thanks for all the prayers and positivity, hugs both live and virtual, love both close and far away…thanks to all my doctors who have continued to put me first when I needed it the most, thanks to all my nurses who support me in so many more ways that I can describe. I am so happy to be going to Honolulu! Enjoy your sunshine! Enjoy your family, friends, and every moment!