Archive for August, 2012

Home: 1 Visitors: 7…

August 29, 2012

It seems these cancer cells are mean. They really are selfish. One week later, I finally thought I had seen the light and it was one of those cancer cells just turning on and off the lights or was it my eyes just shut tight. So far, the chemo is doing it’s best to keep me in bed, and it managed to eat my good blood cells too. All in all, the game is proving more frustrating than ever. Each step of every day is met with new challenges that I thought were happening to someone else’s body. Isn’t it time for just a teeny tiny break? I am not even asking for months or weeks, just a couple of hours without calls, calamities, blood crisis, doctor crisis, aches, pains, and just plain ole’ pain in the butt. I am smiling on the outside and trying to maintain that today is better than yesterday, but not as good as tomorrow. My sleuth Alex can see through it and tries to tell funny stories except my fog creeps in and out and I forget what he is telling me. No one can understand my day to day cancer job. I didn’t choose this job, so I am forced to deal with it the best I know how. Some days are funny, some days are not so funny. I am over it as much as everyone else is over it. While busy life happens, I am consumed with my cancer job and not getting to enjoy the mundane tasks of a somewhat normal life. So, as 2pm approaches, I will begin the calls again and come up with the plan to get myself out of this house. Since my blood counts are being eaten by the chemo, I either stay in the bubble or come up with plan B. I managed not only to exit the house to Hoag Irvine, but did take a shower too. This was a major task and who knew the saga that came after would put me back a half of day. So, as I put on my shoes, I must smile and enjoy my shoes. Finally, after 6 months of blisters, funky shoe days, this new trio of chemo does not wreck my feet. I pull out my extra cute new (old) shoes that I hardly had worn for spring. There is the silver lining: Shoes.  Tomorrow’s score will be better.

Fog, fog, and more fog….what day is it?

August 26, 2012

I have been in the fog so many days that I can barely remember what day it is. I never had the procedure done at UCLA. My cancer was hiding. I was very mentally prepared to be in a drug induced fog during my chemo. The saga began first with the technician who could not find the cancer. I kept saying,” how can this be?” Then, hierarchy number 2 who had me sit, move, roll, and explained in a soft voice that it would be too dangerous. I sent a text to my doctor for the last word and he ran over in a dash to be by my side. I began to cry saying that I have a son and family and I didn’t want to just roll the dice. I know there are no absolute answers. Now, the team explained to me that my cancer was behind my organs and made it impossible to get a sample without too much risk. So, I gathered myself with Jim to enjoy the air and sunshine before I had to go into the closet.

I had made a small demand for my very first nurse who started this journey with me. She is so knowledgeable about side effects and knows how to do my infusion. I was armed with treats galore which seemed to help since not only was I assigned to one of the best chairs, but moved to an even better chair. This was a dangerous move since I had a partner in crime who is often with me during infusions and we tend to laugh a lot about our situations. Also, this new seat kept me put of the sight of the other sick patients. There are more young people this time which always breaks my heart.  I tried to focus on the view which was better than the view of the psychiatric ward (although they can provide entertainment). After sorting all my orders, the infusion began and was over 8 hours. I closed the place down. My doctor visited me about a dozen times during this infusion. I had forgotten about some of these drugs which caused the sensation of shaking my head….I had blocked out a lot of this.  I was in pain caused my cancer hiding behind my organs.

Then, the days disappeared. My pain patch kicked in and I slept the days away. My appetite was gone, but attempted to eat a bit here and there. My fog was so bad that I had no idea what day it was. I hate this feeling. I hate it for myself, but hate it for Alex and Jim. I am dreaming this will work. It has to work. My strength is absent as I give into these chemo drugs. I attempt to count how many days have passed. It feels as if I am in a tunnel screaming except I cannot hear my voice. I cannot focus clearly on thoughts or images. There are slide shows just flashing in my mind and each time I see Alex’s smile, I reach out to hug him, but he is not there.  This will pass as it usually does. It is just taking longer than I remember. I am still in the fog. My mind is cloudy. My thoughts are blurry. dream of the sunshine and hope you are enjoying yours.

 

 

Candid Cancer Camera? It must be!

August 23, 2012

So, these days have proved some of the most challenging physically for me since my diagnosis. Who knew something our body does easily like digestion could turn into a very painful process from beginning to end! In the meantime, I had already had this genetics appointment booked since the test takes months to process. It may be of help or not, but worth a try. Plus, the company, Ambry Genetics is in Aliso Viejo and on the cutting edge of this new technology, so gotta support them. Then, luckily my sis gave Alex an online website task which kept him busy, so I could sleep in. Most nights, I am not sleeping much (unfortunately Jim is not either). I was thrilled to have the extra hours, but as I walked down stairs the phone rang with a call from my UCLA doctor. He told me I needed to get the pre-op blood test or they won’t do the procedure tomorrow. Instead of going at 5am to UCLA, I thought Hoag was the better idea. So, I gathered all my papers for the genetics tests at Hoag Newport and went on my way. Strangely enough, there was no parking at Hoag Irvine ( a first). As I entered, I was greeted as if I go every day (it seems that way these days between the ER visit and repeat scan). Then, I entered the zone of registration. Let’s just say, thank goodness this girl was so sweet, but it was painful. I might as well learn the system, so I can enter my own tests into the system. She was having issues with each step, but my other choice was the lady who still works there and can only accomplish 1/2 a task per 15 minutes. Eventually, it all seemed to work or so I thought. The waiting area was full for lab work which is usually never the case. I had to be at Hoag Newport in an hour. (with beach traffic, you never know) Plus, I hadn’t eaten one thing since my forced hour long slow process eating breakfast. I knew I should eat even though all my hunger cues have been missing since the cancer cells are telling my body to not eat. After too much time waiting, I called my friend in the lab who is the manager. She coordinated from “down below” (she tells me they work in the basement) and helped to expedite things, plus have my favorite phlebotomist. Thank goodness he was there because I saw “the other one” who can barely draw blood from a healthy human. So, I was able to “cut” the line. Thank goodness I am a repeat customer. Forget the punch card, it really helps to make friends with the “good ones” at EVERY hospital. He reviewed my order and tried not to freak out. There was this really long list of tests. We both looked at it together and realized it was for someone else!!!! Are you kidding me? If he wasn’t there, I would have gotten tests I didn’t need and plus a host of other issues. Again, Lesson 525, always double check EVERYTHING!! People are involved with this process and most likely assume that most of them either don’t love their job, have average intelligence, and do not have the attention for all details. This is why I insist on sticking with the best. So, luckily the correction of my orders were fixed and hopefully, some patient wasn’t given some of my cancer blood tests and now thinking her doctor thinks she has cancer!?!?!?

Onto the next location in Newport…I managed to convince the reception that I had to eat something since now I had to get steroided up to prepare for my chemo. Steroids require food even if your cancer doesn’t want them. I met my ole’ friends from my PET scan (cute guy 1 and super nice family guy 2-both have done my PET scans) and some of the nurses from the cancer center who did my blood transfusions. Again, nice to know the right people. I did the blood tests for the genetics routine. I learned a few things and then asked my nurse about a dozen questions. She was extremely helpful and knowledgeable especially about Hoag Oncologists. Wow, it always helps to ask questions as I hear Jim’s voice in my head, saying ,”the worst case is they know nothing, but you usually learn something from everyone. ” Gotta love my Rock Star Husband.  Then, I said hello to all the rest of the nurses who said that they are here if I need them.

So, off to UCLA I will go tomorrow. It will be an all day fest and I will take any and all drugs offered. Hoping to sleep through it all! Staying positive and staying, NEGU (Never Ever Give Up) and praying and hoping and taking the pills…everyone better have a lot of fun tomorrow for me since I don’t think it will be that fun.

Livestrong manifesto: “we believe that cancer should not control your life”

August 17, 2012

Livestrong manifesto continued: We believe that you should live every minute with every ounce of your being, you must not let cancer take control of your life! Attitude is everything, knowledge is power, you are in the fight of your life, it is your life, you will have it your way,your fight never ends, cancer never leaves your life.

With a blink of an eye, it feels as if we are back to that same feeling in 2010 except I have no organs that can be surgically removed. My cancer now has attached itself to most of my digestive organs in my abdomen. The cancer has its own fluid which floats around and shifts as I eat.  So, when I complained of this pain under my rib cage, I could have yelled louder, but the past is the past. At least, I now understand that as my mouth sores are disappearing, I must eat. As I eat, I am in excruciating pain for about 20 minutes as the food tries to move through my digestive system and the cancer tries to prevent this from happening. At least I know what it is now, so I won’t run to the ER. I will lie on the floor and wait for the pain to pass. I will not stop eating and become one of those people I see in the chemo closet who look like the cancer is winning. I will not let that happen. As my husband and son witness my daily battle and I see their smiles, I will not stop eating.

Yesterday, I spent a record breaking doctor visit day. This was the effort for a second opinion if I should need every week chemo (one of the suggestions) that I possibly could get it at UCI. Yes, the UCLA scans from Monday went missing. The night before my doctor did confirm the missing scans and made some suggestions of intraperotineal chemo (chemo directly in my belly), weekly chemo, and 1 other chemo combo. He did call while I was attempting to get some sleep since my tongue has finally gone down enough where I don’t sound like I am from another planet. I decided that I was glad he called even though his message was really about me needing to repeat the scans. (I insisted upon Hoag) Don’t want to repeat another 6 hour day and the potential for meeting that same UCLA technician who could be having a bad WEEK!  Plus, one chemo idea required a shot, so I needed to get that just in case.

So, I went for my scan on Weds, but the worst part was not being able to eat or drink until after 5pm and luckily I managed to swallow a bowl of oatmeal that morning. Oh well, one more day. The scan was fine until they unhooked my IV and I decided to leave a blood trail looking like a crime scene in the room. Everyone was running to help, but all I thought was you better have not collapsed my vein from this friggin scan after over 2 years of chemo- a scan wrecks my veins!?  Blood mopped up and I am wrapped up. I waited for the report which was done stat in one hour. I refused to take one more chance of mess up. The results showed the cancer had spread. It didn’t read well. My doctor called and I joked and said, “it could’ve been worse” and he said, “the clock is ticking, we will start something next week”.

I had one melt down which I wanted to avoid, but the words from the scan were easily understood and the clock ticking image made me feel as if I was hanging on by a thin thread.

Back to yesterday, UCI is worse that UCLA for parking and when I say cancer centers are all factories due to the number of patients, there are really factors that can be differentiated by a few teeny items. These are easy to see and most importantly despite the ole chemo closet UCLA days, one thing remained true, the care of the nurses for the patients.  This seemed to be missing in the dungeon like walk in freezer type atmosphere of UCI. This was also a one stop shop, the surgeons are oncologists, researchers, so some areas hold strengths while others are less of a focus. After a 2 hour wait, we get the initial visit from a Resident who seems to need help with my “complex” case. We were so thrilled that we faxed over 30 pages of records to see that no one looked at one page. I get it…they make you waste your time, so they can bill your insurance for a five hour visit while several residents actually try to decipher the history. Three hours pass and Jim and I are now teeth chattering seeking blankets and ski parkas. Nurses claimed it is job security and they could do nothing except give us an ice cold blanket. Who knew the blanket warmer at both Hoag and UCLA was such a precious commodity. (Hoag even warms the gowns) . As we move towards the three and half hours,  our homeless son, Alex calls saying he is making himself lunch before he leaves again to a friend’s. Good to know and I am hoping he is wearing clothes because for some reason I think it is so hot that he is sitting in his underwear. Second almost doctor (fellow) comes in and doubles the comments from the first about complex history. She takes a few more notes and then is off and out.

The real doc comes in with the Fellow and they honestly admit that there really isn’t a protocol for what is happening to me. He said ideally somehow it would be better to take a sample of this cancer as this cancer is now chemo resistant and has mutated into something that is not the cancer of 2010. I explain the time line that in less than a week my cancer is taking over and spreading fast. He mentioned his experience with some of the other drugs that were being considered, plus a few other discussion points that were not anything we didn’t know. He also mentioned that surgery was not an option, too much risk. They seem to work closely with USC on trials and ask if I want to be on a trial where there is a 50/50 chance I would get the drug. Are you kidding me? Guess the listening part about my son they didn’t fully understand.  I would take those odds for a drug working, but no drug…no thank you.  During this 10 minute visit, Jim and I had realized some of our own ideas after us focusing on my history for almost four hours in a freezing cold room. It was kind of like a torture chamber, but had some benefits. I knew those damn excel charts would come in handy. When you have nothing to do, but look at them for four hours we saw a theme with one drug that I had been on. Now, we are not doctors, but as we left I immediately sent an email to my UCLA docs ( one really enjoyed my chart, so maybe he even looked at it?) and mentioned our thoughts. We know they have their own ideas, but one doc did reply fast stating that it seemed logical based on the numbers and data.  They would let me know tomorrow.

Of course, that didn’t end my day. I had to see another doctor’s office to get this shot. After waiting only 15 minutes, I really thought it should have been an hour, so I could end my day with a total of 6 hours in doctor’s offices. The nurse pulled the needle out only to ask if this was for a horse. You couldn’t help but to laugh. Are you kidding me people? Who thinks this giant gauge needle is okay that is as long as my finger? Luckily, since I am not a horse, this needle was quickly exchanged with a normal needle. Doctor visits were done for the day. I am blinded by my anticipation of what will come next.

So, as there is still so much unknown, I can sit with Alex and discuss his birthday ideas, school clothes needs, and the fact that Jim will be registering him for middle school. He seemed okay and was sweet to reassure me that it would be alright.

In the meantime, I am winning my battle of chemo vs Joanie. My tongue swelling has gone down, sores are still there (trying to brush your teeth is an hour process!), and one more course of antibiotics should do the trick. I will do my best to keep eating now that I can swallow. I cannot let this cancer win even as it reminds me by causing me pain that it is fighting hard, but I am stronger. I have to be for my son, husband, and family and for all of you. I love you all! Make today great!

As long as your doctors hear you and hear what you are saying, you have the team. from my Lessons Learned: The Doctors

August 14, 2012

When your team doesn’t hear you, your tongue is swollen unable to communicate except some weird sounds like you are speaking another language…then, all that there is left to do is cry.  I have to say that yesterday was probably up there on the top worst appointments I have had since cancer. Was it a full moon? First, while waiting for my appointment, I overheard a conversation of a patient who had an appointment, not ending up on the schedule. I double checked and the front staff assured me that I had an appointment and scan scheduled. They would check to see what is going on. I decided to go to the restroom and saw the technician who has done over a dozen of my scans. I attempted to ask her if she was ready for me in the clearest voice (making the assumption that I was not just a medical record number). I guess she understood and immediately started screaming at me that she is not doing my scan, I was not on her schedule, and debated (with me not responding) that she didn’t have my chart. It was such a scene that nurses from each hallway ran to my rescue. I just stood there in disbelief while nurses were running to get my doctor, other nurses chasing the technician while she was still yelling that I was not on her schedule. I said in my clearest heavy tongued voice, “hey, I am the one with cancer, so anyone going to do my scan or do I need to walk into the hospital”.  The other nurses guided me to the scan area and said they would find the doctor and someone would do my scan. I undressed and waited with the lovely paper sheet draped over my legs.  My doctor walked in looking confused, the technician walked in mumbling something, then another medical person walked in (just looking underneath the paper sheet). Normally, with the party in the scan room, there are introductions and other fun pleasantries. There was none of this and I kept wondering who this guy was  and why was he fixated under the paper sheets when there were a million other areas to look (LIKE THE SCREEN!). Technician admitted she did not find my chart and asked me what she found last time. Glad I was up on the medical speak, so I did respond as clear as possible with the findings of last time. Then, the group looked at the screen, said to me, “yes, that is it, spread, fluid, measure this, that, inflammation, can’t you see?’ They looked at me as if I did speak that language and I said, “what is it?” . I questioned if the fluid could be the cause of my pain. Yes, and yes were the responses. Another question to me again, “implant on the dome or posterior of the liver?” I responded with dome and then there is a bunch of measuring.  Miscellaneous guy still looking underneath the sheet. Doctor quickly said that I did this before and I can do it again. What was I doing? What were we doing? They walked out and told me to get dressed while I grabbed this damn paper sheet and used it as a giant tissue. At this point, I found my only solution was to return to the hallway to find some help. The nurses who kept apologizing over the previous episode got Jim. He was confused, but could tell I was frustrated and couldn’t express myself. Not to mention that I have had no solid food since Friday. I made some noises in between my tissue blowing. He knew what to ask and had the same brush off. We were confused and hugged. Was it because there were no answers or because I am now moved to a different category of rolling the dice?  Was it just one of those days and it had to coincide with me having no voice, the technician not wanting to do my scan, or all of the above? No one was listening when one of the drugs mentioned was one that already failed. No one was listening when another drug was mentioned that I was extremely allergic to. No one was listening when the nurse asked about my side effects and complaints. I was screaming on the inside and despite my tears or silence, no answers happened. I started tossing out chemo drug names as best as I can pronounce. I am thought to be understood as another nurse appeared. She told me that my oncologist was out of town for 2 weeks. Funny, how he had just sent me a text before he returned on his flight back from NYC. I was confused. She explained that my case will be on the tumor board once again. Doc responded that I cannot do anything until my mouth sores are cleared up. Too bad, so sad, no “chemo for you”. My general idea from the entire visit was that my cancer had spread. On August 1st when I talked to my nurse at chemo and asked her about my damn pain, she mentioned that it could be exactly what they saw fluid caused by the cancer, but “she is only the nurse’. She listened.  I know this because in just days since my last blood test, my tumor marker is now the highest it has ever been and up 100 points. Plus, I have no more organs to remove. I thought to myself that it has been over 2 years and I am back where I started. I start doing my calculations and running numbers and charts in my head. Without food, I am finding no results. We returned home. I felt too bad to do anything more for the day, plus I did know that my oncologist would be back today. It took me an hour, but I managed to get down two cups of broth. I took my narcotics and tried to sleep.

During one of my waking moments, I decided enough with me not having answers. I needed copies of the scan and as soon as the offices opened, I would email blast all nurses and doctors for more appointments to have someone listen to me or hear me. After also realizing each time I turned in the bed, that what I thought felt like my organs moving around was just this damn cancer fluid sloshing in my belly. Oh great! I think I needed more narcotics to not feel this wave of cancer floating from side to side. I began my day with my tongue less swollen and decided at almost 6am that I was going to eat a scrambled egg even if it took me three hours. I did it. I am going to confess that I just kept swallowing bits with water until it went down. Whatever it takes, I will do. I send emails and requests. I did get answers from the second opinion at Hoag who can fit me in even though he insisted that this past drug combo was the ticket for me. I also got an email with the help of another doctor from UCI who can also see me. I felt if I had a plan of anything, it was better than sitting doing nothing. Plus, I am all about info and all my team knows that, so having less info did not help me at all. I continue to text and email UCLA. I finally get a call from my oncologist who cannot pull up any record from me having a scan on Monday. He speaks of some options, and does hear me when I say, “quality of life” and side effects. I repeat myself often using my best voice, but even he comments that I sound tongue tied. He is going to make some efforts and call me back. He said the soonest I can start any chemo would be next week as long as I don’t have mouth sores. So, let’s see who listens and who comes up with some options. Hoping that they all agree with a plan. In the meantime, I will go back to bed and plan what I can eat next.

On a side note, a special gift of boo boo buddy the frog placed in the fridge seemed to be just what I needed to stop my head throbbing.  When Alex returned home (after swimming, playing), he saw the frog, looked at me, and said, “mom, I need that frog to help my worries go away”. I asked him if it was my crazy hair, but he said it was my grey face. Guess, I have the cancer face. Alex said the frog helped him…whatever it takes.

Another trip to the ER

August 13, 2012

Well, the chemo is winning in this battle. Unfortunately, it isn’t doing anything to kill the cancer. Since Friday afternoon, I had a low grade fever which I read was one of the side effects of the chemo pill.  Then, Saturday fever was higher and my mouth sores were out of control. I tried all my rinses, mouth washes, secret remedies-none worked. I had been communicating with my doc who was in NYC. On Sunday, I called my nurse to see if she could recommend anything. When I said fever, she said call the doc asap. I called the on call line and got my doc. I had not been able to eat solid foods since Friday, but kept drinking and drinking. My tongue was so swollen with sores that I could barely talk.  I still cannot talk. After his call to Hoag Irvine ED, I was off to see if I had blood infection or whatever. All I wanted was my ability to swallow to come back and my tongue’s swelling to reduce. At the ER, doc told me that I had sores all lining the back of my throat.  Overall, I have now become one of those people that the side effects are taking over my body parts. I am too young to have this happen.

I always have hope, but my body is not strong now to fight. I cannot have this and I am demanding a new option for chemo which allows me to live and possibly kill my cancer. It is now the moment of truth. My cancer is spreading, my side effects are too much, I need honesty and a better plan for my quality of life. We are going to UCLA today and I hope to get some answers. It is difficult when my eyes are cloudy from pain and if I take the damn pain pills, my stomach will be more messed up. I cannot have my son think I am too sick and worry so much that he is not sleeping. I need my days to be as normal as possible and this chemo is not the answer. The reality is that I am out of known options that should work, but there has to be a brain somewhere on my team to think outside the box and understand the behavior of my crazy cancer cells. I am confident in my team, but now I am at the top of their list. If not, I will put myself up there. Even though I have no voice, I am screaming on the inside that this is unacceptable. I have lists of ideas luckily from my Rock Star husband who never gives up the search to find what others are doing all over the world!  Of course, this always makes me look like I am the fake doctor when he is in fact the brains behind the ideas.

My days need to be about quality instead of my constant cancer crisis. I need my son to enjoy his days with me instead of seeing me being unable to get out of bed.  We all keep focusing on our cruise and photos showing that I did it! One day at a time. I hope this pain goes away and hope there will be more answers today.

“Hope is the thing with feathers that perches in the soul, and sings the tune without the words and never stops at all.” Emily Dickinson

August 10, 2012

Yes, it has been a long time since my post, but have you seen the cruise blog? The cruise was amazing, but now I am in reality with all my ailments and no little man steward to deliver me a fresh bucket of ice every hour. Okay, I don’t even need the ice now, but something to numb my entire mouth, throat, insides would be great. Since my visit to the ER before our trip, I have had this constant pain under my right rib cage with no real explanation except for the world of chemo messing with my insides. Now, I can officially say that I have entered the “funk” phase of cancer.  I thought it was the after vacation “funk”, but it kept lingering on especially after my chemo. I am now taking the renal cancer chemo pill daily and remind myself that this is chemo despite the lack of nurse and IV AND pre-meds. I am stuck with hiding this pill in yogurt and swallowing it fast since it will cause blisters in my mouth immediately.  Of course, I am still thinking that once the yogurt is gone, then is this pill burning my insides as it goes down? I think the funk is now corresponding to my overall feeling that is  my lacking of  energy and my horrific digestive problems caused by either of these chemo drugs. My new tumor marker is at record level high, so my thoughts turn to the pelvic area wondering if I have “born” a tumor while on vacation. I didn’t even bother to put this new tumor marker number from this week in my chart (even though I know I will) because I really don’t want to see the upward skyrocketing trend. I don’t like how I feel and it is frustrating. With weeks to go until the next chemo which will be who knows what, I have nothing I really can do. So, I know I must refocus myself as I normally due, but it is difficult with the constant dull pain in my side. There are many drugs to try, but none have shown proof of helping my cancers. Can it be such a roll of the dice?

I am forced to take things day by day for my “boys” , family, and friends. I sent the emails and have an appointment at UCLA for Monday, but this is it for now. Nothing else can be done, but my dull pain is like a constant buzz in my ear reminding me that something is not quite right. Oh how I miss my microscopic cancer days. Enjoy your weekend. I know I will enjoy mine as I choose to ignore all my ailments like usual and get out and about to feel the sunshine.