Archive for January, 2014

Knowledge is power and connecting the dots!

January 19, 2014
There is no one who knows your body better than you. If you have a hunch that something isn’t quite right, follow your gut. I always have said to ask questions and understand what you are taking. This applies to any and all medical issues. So, when my week started with hideously low counts, it was up to me to connect the dots. More chemo equals lower counts. You have to know the general side effects. Granted I usually end up with one not listed like growing hair on your teeth (just kidding). I had to explain what was going to be done at UCLA and connect the dots for not one nurse, but two. I laughed to myself at the little notebook I found that Alex used to use for his “Blues Clues” and wrote down the list of items needing a doctor order. We have to monitor my counts weekly or I could be the ticking time bomb on the weekend. There has to be a plan in place instead of the old method of treating things as they happen. I don’t have the luxury of time to play around and experiment. I come up with a plan along with Jim and ask the nurses to get the local doc to complete the plan. It took them hours of effort since I know I am not a priority for this doc. I also know that most oncologists are juggling their patients and giving attention to those who cry the loudest or those who need the most help.

This week I am reminded that there are other oncologists across the country and even around the world that don’t have the knowledge to think outside the box. Having chemo every day, I am faced with not only the reality of what cancer brings to the patient and his/her family, but that many are told too early that there are zero options left. Some of these patients have only had at most 3 standard protocol. My list is now 19 treatments. I give out my list like a goodie bag after a party. My hope is that these patients will NEGU and demand the treatment that I have been fortunate to get.
It is always important to say thank you to each member of your team. My honest discussion with the palliative nurse broke down the barriers I’ve been keeping for weeks if not months. She was able to provide specific advice for my concerns instead of just giving me “the line”. She completely understood what I do, why I do, and my goals. Her belief is that the mind is a powerful tool and that the key to living with a chronic illness especially cancer is to take control and keep control of your treatment. Once you give in to others making your decisions, the journey is over. I expressed my frustrations of living with cancer and without having much free time. She insisted that free time comes in all forms and it is important to value the moments. While my cancer continues to grow, the daily treatment is something I must tolerate especially when my oncologist said, “you have to do this.”  I sent an email of thanks to this nurse. She felt she did nothing, but I found that she had a magical way of dealing with the truth combined with ways of handling all these wretched side effects.
Another conversation was with the mixologist (pharmacist) who took the time to explain the science behind the toxic powerhouse I am getting on Tuesday. He had such a perfect way of explaining the true dangers of the drug to make his point of being hydrated is key to avoiding kidney damage. I keep telling you that if you reach out to people, they will surprise you. I’ve had some refusals over the 3 plus years, but most were eager to help in any way they could providing their expertise.
With my growing cancer comes the reminder of the days with my “lizard baby or alien baby” from another time. The continual discomfort which leads to perpetual pain is something that I keep putting aside in my mind. This is the only way to live my day to day. The ascites is a constant reminder along with my growing waistline. I try to focus on the present moment by talking to Alex or listening to his laughter or watching Alex and Jim play basketball. Seeing their smiles, I feel such joy that it seems to outweigh the discomfort. My week will begin with the blood tests followed by vitamin c infusion which helps with side effects and off to UCLA Tuesday morning very early for my day in UCLA’s closet. Minute by minute, hour by hour, I live for the moments which distract me from my cancer symptoms. I encourage you to thank the people who are often forgotten by the amazing job they do each and every day. I am extremely thankful for Alex’s teachers who are secret angels who watch over Alex every day and understand both his good and bad days. You can make a difference in a person’s life by just saying, “thank you” every once and a while. Few words go a long way. Find your sunshine. I WILL find mine.
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It takes a village to survive cancer!

January 12, 2014

My new lessons learned are: it takes a village to survive cancer and know your history because your life depends on it! I am sure I realized this before, but I am often slapped in the face with the reality.

Besides visiting the Hoag cancer center on Thursday for one more transfusion, I was trying to be in a zen moment. This was definitely difficult with the over crowded situation. It took me back to the days of the original UCLA chemo closet. I was surrounded by moaning, groaning, vomiting, and crying. Geez, I was just trying to pump myself up with blood. I kept on with my smiling face and my closet mate asked me what type of cancer I had. Of course, she was amazed since I never really look as bad as the story goes. She began to ask me about some of my tips and tricks. I realized she was another one who thought there were few options since she was limited by a doctors inability to think outside the box (well actually outside plan A and plan B). She hardly had any chemo regimen and was already repeating with the same drug. It didn’t make sense to her and I definitely would question that as well. I gave her my usual speech on who to talk to, what I took for nausea etc…I realized the blood was barely dripping. Of course, there was crying from next door and continued by apologies from the nurse. There was a crisis which was followed by a request to be silent. I definitely draw the line at silence. We are all in this closet hell fighting for our lives and silence was never part of the deal. Why not remove the crisis causing patient away from the closet instead of forcing a crowd to silence? I continued with my tips and tricks for chemo while she took notes. She left and I was stuck in silence with some moaning coming from the other side. This cancer center is definitely in need of an upgrade.
Friday was my scan day. I have to say that going to Hoag Irvine was like going to a class reunion. Besides my scan going without a hitch, I had a great technician who actually had the “hold the breath” timing down perfectly. It really makes a difference even though it sounds simple. I tried to not let my mind wander as I waited for my report. With my tumor marker approaching the highest point like in March of 2013, I am concerned with my symptoms, but try to ignore them at the same time. Once I received the report, I skimmed it and realized it was confusing to me. I was also concerned that it didn’t read correctly for the trial at UCLA. I decided to follow up on a favor with one radiologist at Hoag who said to call him if I ever had questions. Again, you have to try to reach out to anyone who will talk to you so that you really understand what is going on with your body. It is key to know your medical history, your body, your treatments, and understand how the cancer behaves. You can’t rely on anyone else to connect the dots for you. So,this radiologist went line by line reviewing and comparing old reports to this new report. I realized that as sad as it may sound that I am happy to have metastases in the abdomen with the ascites because none of this had infiltrated any of my abdominal organs like colon and liver which is common. Even stranger to say is that I have enough disease for the trial, but not too much to not be able to continue fighting. Again, there is always the risk/benefit analysis that is done. I had appreciated this time this radiologist took from his busy day. He even explained the pattern of what he sees in scans left untreated or unresponsive, so I understood the pattern of the disease clearly. He also commented that I am way too young to be dealing with this and he was happy to know that unlike most oncologists, we are proactively treating this cancer growth. He commented that many wait until the next scan reads that the cancer has spread to the bones and brain.After talking to him, I realized that I must talk to the doctor who read my scan from Friday. Through a lot of help from a friend at Hoag who treats everyone who walks in the door like some long lost family member, she asked the doctor from the darkness of reading room call me.  He called and went line by line and I explained the requirements of the clinical study. He added an addendum to my scan. Again, I ask myself what the other people do. Granted it took the entire day to get this all done, but I was happy that my brain kicked into fake doctor mode and had the ability to get the information I needed. I also realize once again that it takes a village to survive cancer. Yes, family and friends are required along with your own personal NEGU cheer squad. It really takes the village of skilled hospital staff including lab workers, scan technicians, registration experts, all nurses at every medical facility, pharmacists, and each and every person who touches your medical records to help you survive cancer. Of course, they all don’t realize their gifts, so take time to thank them. Just a short email can go a log way or a simple, “thank you”. For example, the technician who took my last scan may have been able to get the most clear detail just due to his every days skills that he takes for granted. He may not realize his impact to your life. Even the phlebotomist who expertly draws your blood without even one mark. For me, the nurses everywhere I encounter make a huge difference. On the opposite end of the spectrum, there may be road blocks along the way. We refuse to accept “no” especially when it is completely illogical and especially when it is key to my survival. Of course, these paper pushers have no idea the “no” impacts your life and stress level. You have to look at the whole team and appreciate the value of what each person is contributing. They may not know that their efforts are keeping you motivated and alive. This all goes back to my message of kindness. A little bit of kindness and gratitude can go a long way. I am so grateful to my village each and every day. With the upcoming Monday to Friday treatment this week, I am going to find something fun to do today with my boys. I hope you find your fun moment and try focusing less on the silly stuff.

Power of the mind…remembering Waikiki 4/2013

January 8, 2014
Yesterday with the unexpected blood transfusion came the reminder of how miraculous the body is and how powerful the mind is…you see my blood counts were drastically low. They were so low that the charge nurse plus a few other nurses had to come and see for themselves. They were looking at me with many comments that others with these counts couldn’t walk, talk, and would have called 911. I admit that on Monday something seemed a bit off. I decided to go for a sunset walk with Alex at the Dana point harbor. While he jogged along side me, he encouraged me to run which I didn’t or couldn’t even think about. Seeing the sunset and Alex’s smile and  hearing the barking seals, I was enjoying my moment fully not aware that I was a ticking time bomb. Thank goodness I didn’t collapse on the sidewalk. I really enjoyed my moment (gentle reminder for you to find your moment in your day).

Who would have thought that yesterday would have been what it was? Besides my horrible counts and need for a transfusion, I received the result that my tumor marker was 100 plus points higher. (now 200 plus points in 2 weeks). While I sat getting my blood from Washington DC (on a side note think that the DC blood had bad mojo), I just looked at the paper, paged my doctor, called Jim…and sent text messages to family and friends who had asked the status. What little appetite I had was gone, but I knew what I had to do. What surrounded me at the cancer center were weak bodies withering away (some in the bed, some barely sitting up, all hairless)! The nurses had told me despite my growing cancer, I looked good. I realize that this was their version of good compared to what was outside my door. My chicken recipe nurse reminded me of the power of the mind and not to give in to allowing the cancer to invade my thoughts and spirit. Her reminder was that the mind is a powerful thing. The charge nurse reminded me that my body is miraculous. I shoved my lunch into my mouth, barely chewing and not tasting a bite.
I talked to the pharmacist about the next drugs that I am to take. You see if you reach out to unlikely people like the Hoag mixologist (pharmacist), he can provide you answers and prepare you for what awaits you. You just have to be prepared to hear the answer which I was half way prepared. Fear started creeping into my mind, but I continued to push it out. I come home to feel like I had been hit in the head with a hammer only to wait for my doc and see Alex’s smiling face. My doc responded saying he would call at 7pm.
The partnership between doc and patient is critical. My fight for survival is known, but the reality of a toxic drug barely working is now realized. The risk outweighed the benefit. This is a clear case of how chemo can kill you. The hammering of your body with ineffective toxic drugs eating all your blood and barely eating the cancer is the deciding factor. We must stop this chemo and change to the next idea. The next idea is a drug given Monday to Friday and again another drug the following Monday. Plus, doc wants a scan to see if there is an area to biopsy. Both Jim and I took a tag team approach to tell the doc that I cannot go to UCLA every day. I plead for another option which is Hoag Monday to Friday and UCLA on the once a week. For many options besides the driving, this new idea would not work with me living in LA for the week. He agrees to set to attempt to set this up. What most do not realize which I have said before, going to a cancer center for treatment is difficult once a week. It requires a mental preparedness that is difficult to explain. I always said that I would rather go somewhere else to be treated for cancer. The “closet” is a constant reminder of sickness, many on the pity pot, few smiles, and a poor visual reminder of the future of the disease. When I switched from once a month, to twice a month, to every week, I realized how much strength and determination is required for treatment. Besides being your own advocate, I should have added to my lessons learned,  “get into the right head space for success.”
Night time is always the worst time for any household living with cancer. The fear and the thoughts that were pushed to the back of the mind creep to the front. For each one of us, we all have our methods of coping. Often music helps, quiet helps, laughter helps, deep breaths,but often nothing seems to help. Alex is the usually the first casualty who has tried all his tricks even watching late night animal planet to be left with worry. Our new method of fighting these thoughts is me teaching Alex French. So, we begin with the alphabet and some verbs. The funny sound of French words make him laugh and ease his mind into sleep. Somehow this helps me too. I think back to April 2013 in Waikiki when I had the rising tumor marker which was 300 points higher than I have now. The day after chemo in Waikiki, I hiked to the top of Diamond Head. In July 2012, with a bit less cancer, but horrible hand/foot syndrome, I walked across Olympia and the Parthenon. I did these things before. So, instead of having one of my few panic attacks, I focus on this plus the fact that this last drug was slightly working a teeny tiny bit. The next combo will work too. All I need is somewhat stable disease to enter the trial and continue the journey. I know I can do this. I know it won’t be easy. My mind is a powerful gift and my body continues to surprise us all.
In the early morning hours, I managed to schedule the rest of my blood transfusion and my scan is scheduled for Friday. Next on the list is the Monday to Friday at Hoag. We all know how this local doc is not like my beloved UCLA oncologist who will jump to make things happen for me. I am just another number to her and not a priority. The games begin again, but first a shower and a walk (slow walk) on the beach. The sun is shining with a little fog both in my mind and outside. I remind myself again that I am not a statistic. I can climb any “mountain” that I face with the continued support of my smile patrol, NEGU cheer squad and especially family and friends. Again in the words of a very dear friend, “find your one fun thing today!”

Lessons learned #13: each person hears differently

January 4, 2014

In reference to #13 (each person hears different things), I highly recommend another set of ears for any important doctor appointment. As a patient who has had ongoing chemo for over 3+ years, I definitely hear things differently. My chemo fogged brain or living in pain causes me to definitely hear every other word. On Thursday, my doc arrived to review the lovely checklist that I created. My mom came too. As my doc reviewed the list, I heard, “blah, blah, blah” and next drug has these side effects, surgery, moving to another city for a trial…all info created a bubble of anxiety which made me feel that I was in a tunnel. Meanwhile, my mom heard that there are options and Jim heard that there are still many items outstanding which require follow up, but due to the holiday we have to wait another week. We all heard the same thing about next week. Next week will be the week to know if this drug is providing any bit of disease stabilization. If not, the next drug option would be an every single day chemo. Hmmm…I cannot think about that now. I remind myself that I must stick to the one day at a time.

Before chemo, my niece along with my sister created an amazing carnival of activities for our New Year’s Day party. It couldn’t have been better. Such special family moments of playing, “who is smarter than a 5th grader”, making a mask photo booth, writing a letter to our future 2015 self (I passed on this activity since I cannot think about tomorrow), pick a name from the basket and tell of your favorite memory of that person…and much more. All so creative and all was so meaningful. I enjoyed every minute.

After chemo, I talked to the palliative nurse who gave me some ideas on how to manage things without a ton of drugs. Mostly, she was amazed with my attitude and perseverance. She reminded me mostly of quality of life and making the most of my day, hours, and minutes. She will call me in a couple of weeks. I cannot even think about the couple of weeks. Deep breathing, looking at the wispy clouds in the sky, and seeing the palm trees in the wind, I miss my family who left yesterday. I will find my sunshine and hope you find yours. Instead of your new year’s resolution, why not find your idea of the year that represents you and stick to it. Weight and fitness seem to be so unimportant (especially for me since keeping on weight means staying alive). What about sticking to the simple important priorities like family, friends, and just plain ole’ enjoying your day? What about being kind to others (meaning everyone: on the road, off the road, in the store…)? What about NEGU as it applies to everyday living? What about not stressing about the silly things? What about living in the present? I am asking you to find the idea for 2014 and stick to it. My idea is NEGU and even more focus on enjoying the moments.  Take a look around, there is so much to enjoy. Today is now. Yesterday is gone. I find my joy in the simple things and hope you find yours.

 

Lessons Learned Living with Cancer (but can work with any chronic illness)

1. Be your own advocate BYOA

2 mistakes happen

3. Take control of your treatment TCT

4. Drug dosage based on 200lb man, you may need to adjust

5. Sometimes there are no answers

6. Living with the unknown, part of the journey, try to accept it and live in the present

7 it’s okay to visit the island of negativity, but make sure it is a short flight

8. There is always someone sicker than you, dying today, yelling for your doctor’s attention, so choose to be demanding at the right time

9. Nurses are the best source of info

10. Ask questions, don’t be afraid

11. Ask for help, to friends, neighbors, co-workers,

12 for you to succeed, you can’t do this alone, this journey requires you to get help,

13. Take notes and have someone else present, each person hears different things.

14. Eat and drink, whatever, whenever, your body needs fluids and nutrition to fight the cancer

15. Seek out 2nd, 3rd , 4th opinion, you can learn something from every doc.

16 use your time wisely and save your energy for what is important to you.

17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope

 

A new “normal” 2014 begins

January 2, 2014
Living with cancer means that there is never a day “off” from the job for you or your family. So, last week on Thursday, I got one of the drugs called epirubicin (evil twin sister of doxil) which has known cardiac toxicity among other toxic side effects. There is a lot of unknown since this is a single agent at the original high dose that I had 3 weeks ago. Just thinking about it causes the memory of ongoing nausea. Between much fog, I took not one but two growth stimulating agents to cause my bone marrow to produce more white cells, immunity fighters. As this journey has a continued learning curve, I realize only yesterday with my blood tests that I may have not needed any shots, but especially not two. So, while Monday I was moaning and writhing with horrible bone pain, a pain so deep that no amount of massage or touch or drug can relieve it, I was very foggy.  Even with the constant back rub by Alex, I only could whimper continually until Jim forced me to take a brief walk to clear my head from my pain. It did work despite my protests.

With my family visiting, this brings a much needed escape for Alex from seeing me in the fog. He came home each day smiling and laughing and it couldn’t have been better medicine for me. Then, my mom (driver for the day) took me for my blood test and took me for my vitamin C infusion. I know vitamin c helps with side effects, but this crazy middle of the week holiday puts my chemo to Thursday and I fear the magic may not last. Besides vitamin C being helpful for side effects, the knowledge of the nurses are invaluable with tips and tricks but few will actually listen and take advantage of this valuable resource. My mom and I enter the “closet” and I bombard my mom with my emotional explosion of my fears for the day and for the unknown. It is something Jim has heard before and is all too familiar with…my mom expertly listens and provides comfort to me that only a mom can provide. I realize after many tears that this is something to release and move on to live for today and look forward to seeing my sister, bro in law, kids, dad, and my boys for lunch. We also are visited moments later by my co-closet New Year’s eve day cancer partner who has brain cancer and is only 30. I see he has lost weight, but his smile shows me his passion for life and he is motivated. So, I must move on from my own pain and be his cheerleader and remind him that we are not statistics, advise him to value a compliment from a nurse or technician since they see it all. We review our food phobias because for me each meal brings an anxiety that can only be understood by someone with cancer. His mom is there too plus a fellow “port sister” and we discuss balance with living with cancer especially when on chemo. In the back of my mind, my thoughts drift to the pending tumor marker results. I review my symptoms and fear it may be worse since I feel horrible, but don’t know what is chemo and what is cancer. With each meal comes a full blown strategy of what I must eat even though I have zero appetite. What little hair I have is raining on my towel from my shower or just a scratch of my head. My abdominal pain is confusing as I try to remember if this is worse or better than before. I’ve been in this place before except I have not been here with no obvious options and trials across the US which could put me on the door step of any of my friends in the East or Midwest. My oncologist is back in the office and Monday asked me to send results ASAP to know what our plan is for Thursday. I call and find out that my tumor marker is higher by 80 points which may seem like a lot, but in this land of unknown it could be four times that if the drug wasn’t working at all. So, it must be working to some degree and as small as that may be, it has to be enough. On Thursday, it looks like I will get the reduced dose of the evil twin sister. It has to be much reduced for a weekly regimen to stay in my body longer to keep killing cancer cells and also for safety as this is always a magical balance of what you can tolerate, what can kill the cancer without killing you. When I was on the good sister of this drug back in 2012, I didn’t have as much cancer as now, but my tumor marker would fluctuate up a bit and down a tiny bit, but it took some time to work in this pattern. With much analysis paralysis, we can think that the evil twin sister may do the same.
So, now my days are filled with much planning for meals to be consumed in small bites, ignoring the aches and pains that always become much more apparent in the hours before sleep as I try to find a comfortable position to sleep. A new pain in my hands is most likely neuropathy, but I tell myself it is much better than the foot syndrome when I couldn’t walk. I pull out my comfy pants and look at my swollen belly to know the cancer is there. I tell my belly, “bye bye cancer” as if it will move like a growing baby in response to my demands. I forget the many days I had without these symptoms and realize that I can do this new “normal”. There are many who are worse than I am and even more who have lost their battle. I have the support of an amazing family and cheerleaders who remind me every day to NEGU. So, for now I think back to the question of New Year’s resolution and I have only one, the will and drive to stay alive and fight. I ignore the unknown and focus on the laughter, the joy, the living in the now because that is all I know. I look forward to being with my family and enjoying the party my nieces, Sofia and Chloe and nephew Max created. Much sunshine for today! Hope you kicked off 2014 finding your sunshine and not sweating the small stuff!