Peritoneal Cancer Journey - VIII

Phase VIII

Well on November 8^th I received a call from one of my infusion nurses, my hemoglobin level is back down to 7.8 again.  Man this Carbo/Doxil regimen is knocking my red count down.  We talked a bit; I am not exhibiting symptoms of being anemic.  So maybe my count is on the up swing…  That would be great and that is what I am thinking, focusing on.  I am scheduled for another round of lab work next week.  So the Doctor said because I was not overly tired or exhibiting shortness of breath that he was comfortable waiting for the next blood test.  So that is what we will do…  I was told if I start exhibiting those signs I am to call immediately, which I promised I would.  Hmmm maybe a nice bottle of red wine to promote, feed my red blood cells…  Oh decisions (laughing).  

On Sunday I went to church with Lynn and after church they had Reiki treatments so I thought that would be good for me, Lynn said the same thing about the same time I was thinking about it...  I have not had a Reiki treatment in quite awhile, years…  For those that may not be familiar with Reiki, it is, from http://www.reiki.nu/reiki/reiki.html:

What is Reiki

Reiki (pronounced Ray-key) is a Japanese name consisting of 2 words Rei and Ki meaning spiritually guided life energy (commonly known as Universal Life Energy), an energy which animates us all and is found all around us.
Reiki is a form of spiritual healing using "universal life energy" channeled through the practitioner to the recipient.
Reiki helps to harmonize body, mind and spirit for yourself or anyone you want to help.

Reiki treatment
You relax, fully clothed, on a couch or seated while the healer holds his hands on or above you. A treatment can last an hour or longer depending on the treatment required. In the western world many practitioners use the standard hand positions and commonly a full treatment is given covering all the important organs of the body.
There is no pressure on the body making it ideal for treating all ages and conditions, sometimes hands are even held away from the body. The energy flows wherever it is required (spiritually guided) and can normally be felt as a warm sensation or tingling in the body. Receiving Reiki is a very relaxing and soothing experience!

Reiki - a powerful and gentle healer

• Promotes natural self-healing
• Balances the energies in the body
• Balances the organs and glands
• Strengthens the immune system
• Treats symptoms and causes of illness
• Relieves pain
• Clears toxins
• Adapts to the natural needs of the receiver
• Enhances personal awareness
• Relaxes and reduces stress
• Promotes creativity
• Releases blocked and suppressed feelings
• Aids meditation and positive thinking
• Heals holistically

The energy you feel throughout your body is amazing and restoring, is the best I can describe it right now.  The first time I received a Reiki treatment it kind of scared me, the sensation was so powerful, nothing like I ever felt before.  I had two healers working on me and WOW, it was amazing… 

This treatment was so peaceful and powerful.  I could feel energy coursing through my body.  The music director and some of the chorus members were practicing one of my favorite songs the whole experience was so amazing…  Peg said I was just soaking it all up and graciously offered additional treatments…  I will have to be sure to take Peg up on her offer and have another treatment or two… 

Monday just before dinner we received a call from Lynn’s nephew asking if we were going to be home, he had something to tell us and wanted it to be in person.  Oh My…  did our imaginations work overtime…  He was to be deployed to Afghanistan later this month, so the first thought was he was going to get married.  We had no idea to whom, as we were not aware that he was dating anyone seriously.  We ate dinner and waited for him to come over.  When he arrived he handled Lynn what look like some kind of mailing, not sure what it was.  Lynn read what he pointed to and shrieked…  His deployment was CANCELLED…  Woo Hoo…  He found out in his monthly newsletter… That was so weird; you would think the National Guard would have sent something more personal than that with something that has such an impact your life.  Anyway it was much welcomed news…  Will said he will be deployed to maybe to Kuwait, just don’t know at this point when except in the next year.  He is a bit frustrated with the whole Army National Guard division he is in as he has not been able to complete any college; each time he is enrolled he gets sent for training after a semester.  Anyway phew…  Break out our favorite Red Wine, Viva Bene “Life is Good” Chianti, our last bottle…  Angie (the mom), David (the dad), me enjoyed it.  Will, Lynn had a beer of choice and David, Lynn, Will had a shot of an aged brand of Whiskey that I forgot the name of, Megs took a sip of the whiskey…  In celebration…  The Chianti tasted wonderful and dual purpose for me, celebrate Will’s good news and feed my blood… 

On November 15^th I had my Doctor appointment before Chemo.  Sigh…  My CA-125 number crept up to 2100…  Really, oh man.  My hemoglobin is still below 8.  So what does that mean you ask?  That is what I am thinking… Well, my doctor said the CA-125 could be a false positive.  So we scheduled a Cat Scan for 11/28 as it has been awhile since my last one.  I am really feeling the same, not symptomatic…  He also said we could try a hormone therapy with the drug Avastin that can be added to the Doxil/Carbo treatment regimen, taken alone or with another treatment protocol.  He also mentioned another chemo agent, but I don’t remember it.  My doctor talks things out when something is not to his liking so there were a number of options discussed with Lynn and I asking questions throughout.  I am very thankful that Lynn is with me, I always have someone with me as there is no way I will remember everything, always lots to take in…  My Doctor wanted to see what the Cat Scan showed.  One of the side effects with Avastin, though low is gastrointestinal perforation.  My next visit I will get more information from my doctor on what can cause or contribute to this so before we finally decide we will continue to be confident and positive.  He asked how I was feeling, tired all the time, short of breath?  The answer is no, I feel good…  This treatment we will continue with Doxil/Carbo and YES, Doxil is available.  I am re-affirming my CA-125 is a false positive; maybe my Reiki treatment resulted in another large cell kill… Yeah, that’s it…  The Reiki boasted the DoxilCarbo treatment I had in October…  

The wedding plans are coming together quickly now, Lynn and I plan on marrying on 11/25 so it is now less than 2 weeks away, wow it has come together quickly.  We bought our dresses after meeting with the Bakery making our cake.  The woman we met with asked what color our dresses were when trying to decide on cake decorations and we said we don’ t have them yet.  The look on her face was priceless, which led her to clarify, you are getting married 11/25 of this year?  And continued with you know it is like two weeks away…  We said yeah, we have plenty of time (laughing)…  Anyway all the main wedding arrangements are done (Church, Reception, Music, Invitations out and responses are back, count turned into the cater), just some last minutes things to get to…  Lynn has them planned out making sure I get my rest and not over due it.  That has worked out very well, and my main job is to not over due it at work, which I behaved, laughing.  I am feeling good and not overly tired…

Thanksgiving will be at mom’s this year and we all are bringing dishes, that worked great as no one had to do everything…  I was in charge of squash, I sautéed winter squash with a little olive oil, a pinch of salt and pepper.  The flavor of it I love.  All the food was wonderful, wine very tasty and sharing all this with most of our family was GREAT, (our nephew Brian and his girlfriend were on vacation over the Thanksgiving Holiday).  They were there in spirit.  I was so full eating; all my favorites were there and of course tried them all, laughing…  Yes, there was lots of napping after dinner which I mentioned was the turkey effect.  Megs clarified that this is a myth, there is not enough of tryptophan to cause sleep...  I said are you sure?  My mom said everyone is sleepy because everyone over eats on Thanksgiving... Well what ever the reason it is a wonderful holiday spending time with whoever means a lot to you... 

Peritoneal Cancer Journey - VII

Phase VII

I am feeling very fortunate with my October 18^th appointment being able to have Doxil available.  My numbers continue to trend down to 1800, lowest for the year…  Woo Hoo…  The side effects that I was very nervous about are not that bad and I am very fortunate not to experience them for too long.  Day 1 and 2 after chemo are what I call my steroid high days with my Emend.  Day 3 after chemo I sleep on an off all day, I attribute that to not being on steroids on day 3 so it is like a crash.  We have two boy cats (Boomer and Bonzi about 3 years old, brothers) that love nap hour(s) too…  You will see me sleeping and one or both of them with me sleeping, sometimes one in under the blankets and you just see a paw or two with the other sprawled out next to me or laying on me.  My family just loves day 3 to day 5, I don’t know what I want to eat, or what sounds good.  So preparing meals those days are difficult at best.  It starts with me asking, “what shall we do for lunch, or dinner”, followed by suggestions from Lynn and Megs, my mom, and sisters.  Guess my face tells them their suggestions are not hitting the mark…  They have all resorted to “what will you eat today”…  Go figure, so there usually is a lot of takeout and a variety, more than I could ever eat because I just don’t know what will taste good, so we get whatever sounds good me...  It’s the platin drug thing foods simply taste different...  I have been asking for Kentucky Fried Chicken…  I like their original recipe chicken (breast or strips) and coleslaw…  So that is usually one of the things we have for dinner during the week after treatment.  When the commercials come on for KFC we laugh as my mom and sister both told me to try it when I am not wanting anything as that is something they were always able to eat too…  My mom actually picks some up for me when she knows I am going to home alone on a night so she knows I am eating… 

With Doxil there are potential skin issues that made me really nervous in the beginning.  With this chemo agent I need to watch how warm things are that I touch.  From the water I wash my hands in, to preparing and cooking meals.  Neuropathy is always a concern on chemo and yes I have some of that going on.  I am fortunate that it is manageable and not slowing me down.  Some days it is more prevalent to me than others, right now it always subsides to a manageable level if you will.  Barb says that is because I keep moving, I don’t lay around too much, even on my sleeping/napping day I walk around the house and such, what I call puttering.

When I was first put on Doxil and carboplatin the infusion nurse talked to me on how to take care of my skin and manage the symptoms, what to look for and such.  Seems with this combo you need to keep your skin temperate, not exposing it to extremes.  Avoid acidity or spicy foods.  I noticed heartburn seems to come on more easily now right after treatment.  I have noticed that I go from cold to hot feeling wise in like 0 to 60 seconds.  I try to drink lots of ice water or cool water and always have lotion with me.  When I am home I have my one insulated cup filled with ice water and sometime lemon to change up the flavor.  My favorite lotion that seems to really help me is Evelyn and Crabtree Gardener’s Hand Therapy and Utterly Smooth.  Gardener’s Hand Therapy is my favorite.  I use it all over including my face.  Don’t need a lot of it; a little dab will do ya…  My sister found this to be really helpful when she was going through radiation for Breast Cancer.  She would put it on after treatment and wash it off before the next.  It really helped her through that regimen.  Any rashes or irritations I see go away when I use these lotions almost immediately.  I lotion up after a shower or bath and through out the day as I feel I need it.  I have a variety of cold packs that I use in various sizes; they really help when I am hot to cool me down quickly.    This really helps keep me comfortable, which is a good thing…

Found another article posted by CBS about the shortage, still no real answers

http://www.cbsnews.com/stories/2011/10/03/health/webmd/main20114141.shtml?tag=mncol;lst;8

It does talk about the importance of drug companies telling the FDA of potential shortages, which would allow the medical community to adjust accordingly.  This they said avoided 99 serious other drug shortages…  I was surprised again to learn that it is not a mandatory requirement.  Hence this is what I would attribute to a laxed response by Jennsen to the Doxil shortage that the manufacturer had to know was not going to be only a few weeks and other drug companies as well. 

On October 31, 2011 CBS reported President Obama’s attempt to address the serious issue of drug shortages in the US

http://www.cbsnews.com/8301-501708_162-20127754/new-effort-to-reduce-drug-shortages-a-small-step/?tag=mncol;lst;6

Still no real response except a lot of words with VERY little news coverage…  So concerning and frustrating to patients that this effects.  I am a member of a online support group for Ovarian Peritoneal Cancer patients and am seeing patients being put on other protocols due to the Doxil issue.  I am grateful that I am getting the protocol, I have only missed one cycle and feel very fortunate. 

November 2, 2011

http://www.cbsnews.com/8301-501369_162-20129231/congressman-demands-info-from-gray-drug-marketer/?tag=mncol;lst;4

This discusses the Gray Market in pharmaceuticals, with suppliers obtaining short supply drugs and selling them at a premium price to pharmacies and hospitals...

I cannot believe in today’s age that is going on, I know drug manufactures are businesses, but to put patient lives over profits makes me really ashamed of us as a caring nurturing nation.  Really, not profitable to make it so stop and don’t look at whom it will hurt without it’s existence?  And suppliers stock piling short supply drugs and then marking them up 600 times more than they should be.  And then not respond to government inquiry to price gouging, really…  They should have to pay the profits they are reaping in fines and penalties, it is taking advantage of patients at a time when they need support, encouragement and needed treatment that is expensive on a good day.  Words escape right now.

Now they are questioning is this Obama trying to grab attention for re-election?  Really…  Makes me laugh…  Someone needs to do something, as obviously the system is not working as is should.  Big business does not have a conscious.  It is not human.  Many CEO’s drive their companies to bolster share value as they reap millions in dollars in stock options.  It was thought that CEO’s would take care of companies when they are paid with stocks but in today’s pay packages and CEO turnover this philosophy does not work and the companies do not grow their markets, they stay stagnate to shrink while the stocks are inflated for the short term gain.   This is not a problem in any one sector of business it crosses all venues of big business…

http://www.cbsnews.com/video/watch/?id=7386629n&tag=mncol;lst;2

Okay time to get off my soapbox…  (Smile).  I am going back to happy and light hearted…  I will continue to look for updates on the drug shortages as I find more information I will include it with my blog, right now I am happy that I am able to receive my treatments as planned and my numbers are trending down…  Woo Hoo.  Happy Dance around the house…  Makes me laugh thinking about dancing around the house, as did you know people can see you dancing in the living room if your drapes are open…?  A friend saw me dancing up a storm when Megs was like 3 and we were dancing to a song she liked.  Anyone going by our home could only see me and my friend said Cath why were you dancing all by yourself in your living room, you know people outside can see you…  No one could see Megs, they only saw me…  <Laughing>!!!  Yes, I can only imagine how many times that has happened over the years!  And yes, I still am dancing in the living room when a song comes on that I love…

Peritoneal Cancer Journey - VI

Phase VI

My transfusion went fine and I really enjoy reading “The Help”  I am bringing this book to my next treatment that is scheduled for September 21^st; my blood work from last week looks good.  My hemoglobin is up and all other levels are good.  My CA-125 dropped to the lowest level all year at 1950.  YES!!!  I am Happy and doing the happy dance in my head.  Yes, I know for many that is an outrageous number, but for me it is high, but not outrageous.  As I mentioned in Phase I when I was diagnosed my CA-125 was 10,000.  My GYN said that this number (10,000) is not representative of the amount of disease they found.  That my blood is sensitive to the markers they measure.  It’s a good thing, we just don’t know what a base line is for me.   So we are winging it…   

My September 21^st appointment with my Oncologist is another appointment with an interesting conversation; we have had many during my visits over the 1 and 1/2 plus year.  There is still no information that I am able to locate on Doxel’s drug shortage.  I don’t know how long this is going to be an issue, but from the CBS report it looks like months.  My doctor is not saying much about the shortage, except that it does not make sense in this day and age which I agree.  The discussion went discussing that I must be a democrat and he is a republican and the inherent differences in our parties.  Which somehow led to our different impressions of Obama-care.  I feel something has to be done, our health care is unsustainable the way it is costs wise.  Are flaws in the legislation?  Yes, there is the answer is not to scrap it but to amend it.  Now you have to understand I have worked in healthcare collections for like 25+ years.  I understand many regulations that affect what I do and I read them regularly to stay on top of the ever-changing environment I work in.  So yes, I did read quite a bit on Obama-care., my doctor was surprised by this.  Actually I guess many people would be surprised that I read a good portion of it…  Our conversation quickly focused on the “death panels” that the republicans really touted.  So I explained what I read in the regulation, that it discussed the decision of curative care versus palliative care.  The legislation states it rests with the doctor and the patient, as it should always be.  I agree that it is an individual decision when a disease has progressed to a point that quality of life needs to be measured against the impact of curative measures and quality of life.  That discussion is between a doctor and the patient.  Hopefully the patient talks with their family as part of the decision.  I continued that death panels have always existed in the private insurance industries.  He looked at me puzzled and I proceed with my take on it.  I have read numerous cases where insurance companies have denied care under the guise of “It is not covered under the Plan”, “It is a preexisting condition”, “It is an experimental treatment”.  And my all time favorite that they don’t readily admit and I have experienced in collections is “it breaches payment thresh holds and payment is denied”…  The individuals in these situations have had to sue insurance companies to get the care that should have been covered.  The saddest thing is that 8 out of 10 times the patients have won which is great, but the cost is their disease has progressed to a point where instead of curing the disease, or getting it into remission, they are now treated to try and preserve days/months and hopefully year or two of someone’s life.  If treatment would have been covered like it should have they could have had a full life…  Then we talked of AMA recommendations versus Health Insurance companies’ standards of care and the disparities there in coverage… Yes that was one of many interesting conversations we have with my follow up appointments with my GYN Oncologists.  

As noted in Phase V, there is no Doxil for this treatment and they expect some anytime now.  I am to call daily and check if they have the drug or not.  Hopefully it will come in the next day or two and not mess with my treatment schedule…

I made my call on Thursday morning September 22nd, 2011 as instructed by my doctor, and they did get some Doxel!  They have a dose for me because someone else that day was scheduled to get it and was switched off that combo so I got it by default.  Hell, I don’t care that I got it by default.  I am doing a happy dance at this great news.  I did learn that because my treatment was Wednesday and I didn’t get the drug that I went to the bottom of the list and that this was the only way I would be eligible to get it.  Really?  In this day and age, I was and still am shocked by this and yes a bit out raged, this is my life they are affecting.  It is really unnerving that this is happening and the affect it can have.  Sigh.  Okay, I am now focusing that there is a treatment for me so on ward.  Time to psych myself up for my treatment…

I took my 5 steroid pills in the evening before my treatment and again in the morning.  I am ready for my treatment.  Lynn and I arrive with coffee and snacks in hand, this will be just a couple of hours as I already got the Carboplantin on Wednesday.  The infusion of Doxel starts and I am doing well.  The nurse speeds it up and I am like holding my breath so to speak, waiting…  I feel okay, not feeling flush.  Thought I would check with Lynn so I look at Lynn and ask am I flush?  She said no, you have that steroid glow going on, good color in the cheeks...  This made me laugh, I know my checks have good color from the steroids and I am really happy that I am not reacting…  This is a HUGE relief.  My doctor stopped in after rounds at the hospital to check in and walked over to me and said, I see we scored some drugs for you.  I laughed and said, yeah good drugs too… I just want this shortage to end. 

I read on a Cancer Survivors Network a comment by woman wanting to know if anyone else had found they are more emotional now.  She used an example about sitting in a theater and tears run down her cheeks, was this normal?  I would say yes, I am more emotional now when I go to the theaters, movies, and birthday parties, hell any party.  I am SOOO very happy to be here each day I awake…  I am not missing on anything, enjoying every challenge, fun day I have.  Megs has always laughed at me and says quite often “oh man mom are you crying again?  Really, it’s a commercial…”  Yep I cry even at commercials.  Grant it I use to cry at different movies and such before and I would tell Megs not to make fun of me or she will find herself tearing up at movies too.  Now it is different and my tears are not sad tears by any stretch, I cry Happy Tears…  I am so very happy to be here…  I value everyone and every moment in my life.  Even when I am not feeling my best I am happy and focus on happy things in my life, my many blessings.   Do I wish I didn’t have to go through this, of course I do, I wish no one had to go through cancer treatments.  As I said in my previous posts, this has given me an opportunity to take stock in my life and align my priorities that make me happy.  So are tears normal, yes they are…  And I always carry tissues with me were ever I go… 

Okay I was doing a little Internet searching on simply the word Doxel, Doxal, Doxil and guess what I found?  I found the manufacturers website!  No kidding.  I laughed when I read what was there is actually a link called “Doxil C.A.R.E.S”.  It strikes me funny, almost like an oxymoron.  Here is the link so you can see for your self if you would like:

http://www.doxil.com/doxil-supply-shortage

I am unfamiliar with the Doxil Cares program but I guess it is a way for doctors and infusion clinics to enroll their patients currently on Doxil so they are a priority in getting the drug.  My Doctor must have a Business Associates Agreement with them and registered his patients, not sure.  Will check next time I am there.  There are also copies of the letters sent to providers regarding the shortage of Doxil, which I found to be interested in reading.  The June letter indicates the shortage should be short lived.  The July 19^th letter says there will be some available in August and intermittently in the weeks thereafter, 1^st time they advise not to start patients on Doxil due the shortage.  Okay this did not make me happy as I started on the Doxil regimen on July 6^th now 19^th the shortage is such that new patients should not be started on it…  Oh My…  The August letters indicates how sever the shortage really is and Jenssen launches the Doxil C.A.R.E.S. program.   The September letter indicates that availability will be intermittent over the next several months.  Several Months…  Oh My...  I am not getting a warm and fuzzy feeling with this company.  Reading these letters you learn Doxil not manufactured by Janseen, but they contract with a 3^rd party manufacturer who had issues with capacity, which I heard were OSHA related...  Also the September 23 letter is of particular interest as it says this 3^rd party contractor that makes Doxil is getting out of the business…  Really…?  They have another contractor to take its place, and will be transitioning over the next several years to them.  I guess not knowing this information would be more settling, than knowing this and feeling a bit unnerved.  Something is to be said for being in the dark just going along with things.  The other thing I find interesting is in each letter they keep emphasizing there is no generic version of Doxil available in the United States, so does that mean there is a generic available out side the U.S.?  Makes me wonder…

Combating Chemobrain: Keeping Your Memory Sharp

FACT SHEET:

Combating Chemobrain: Keeping Your Memory Sharp!

Tips provided by CancerCare and what has and is working for me.

#1-Make lists.  Carry a pad with you and write down things you need or want to do, remember.  Cross them off as you go.  For me I start many lists and lost them…  Lynn helps me and so does Megs in maintaining lists for the house as I like to grocery shop and keep the house stocked… 

#2-Use a portable planner or personal organizer.  These can help you stay on top of day to day tasks and keep track of appointments, special days.  Paper or electronic versions are available.  This I find is very helpful for me as Lynn does this for me.  Megs also makes sure she writes her schedule on a white board for me as I don’t always remember what she says so this way we all know who will be home and when.

#3-Get a wall calendar.  For some people this works better than a portable planner because you can hang it up in place, that is easy to see it everyday.  This works very well for my sister.  She has actually used this for years when her children were growing up it kept everyone informed on everyone’s schedule and where they needed to be and when.  She just brought over a humming bird calendar for me to use…  We will try it…

#4-Keep a “memory notebook”.  For many people a simple ruled notebook works just as well as a planner.  Use one to record everything you need to remember such as:

Ø  list of things to do

Ø  the days, times and addresses of appointments

Ø  your medication schedule

Ø  important telephone numbers and/or

Ø  names of people you meet and a little description of who they are.

For me I did start a memory notebook twice.  I lost or misplaced my first one and have started a second one.  Having Lynn help me with this is much better for me.  Huge help with updating my electronic calendar in outlook, it automatically reminds me which helps me when I am unfocused.

#5-Leave message on your answering machine to remind yourself of something important.  When you listen to your message later, write it down so you don’t forget it.  This made me laugh when I read it because it is such an easy thing to do.  If someone at home answers the phone you can have them write it down for you.

#6-Organize your environment.  Keep things in familiar places so you will remember where they are.  I find this to be very helpful and makes me happy to do, it has a clearing effect on your life and feels good when you organize you spaces.  This is something I am ALWAYS working on.  Clutter feeds my focus challenges.

#7-Avoid Distractions.  Work, read, and do your thinking in an uncluttered, peaceful environment.  When I read this I laughed because this is so true for me right after a chemo treatment for about a week.

#8-Have conversations in a quiet place.  This minimizes distractions and lets you concentrate better on what the other person is saying.  This one hit home too and in addition to hearing what some is saying to you, I find it also helps me focus on what I am saying to others.  This one made me laugh too when I think of talking at home and poof my thought would go away or my conversation would go to a completely different topic.  Megs and Lynn go with it which helps me a lot.

#9-Repeat information aloud after someone gives it to you, and write down important points.  This is another good recommendation.  When I go to doctor appointments I have someone with me so someone else hears what the doctor says.  As many times I have treatment right after that and some of the information gets confusing for me or I forget exactly what was said and covered.

#10-Keep your mind active.  Do crossword puzzles and word games, go to lectures that interest you.  I have gone to lectures with Lynn and taken classes that interest me.  These really help me and give me a sense of doing normal things.    

#11-Proofread and double check the things you write to make sure you have used the right words and spelling.  This has really helped me a work.  I have found and corrected incomplete thoughts and sentences that I just didn’t understand what I initially tried to say. 

#12-Train yourself to focus.  Often we do one thing while doing another, which increases our chances our chances of forgetting something important.  I find that during times that focusing is a challenge I limit myself to one task at a time.  Whether it is at home or work I feel better as I see progress in what I am doing.  And I do not beat myself up if I forget something; I simply try a bit harder to focus.  It really does work, some days more than others and that is okay.

#13-Exercise, eat well, and get plenty of rest and sleep.  Research has shown these things help your memory work its best.  This one reminds me of great advice I received when Megs was first born.  My mom said sleep when the baby sleeps, as this is the best way to get the rest you need to take care of the little one that is now your responsibility.  That advice applies here.  I nap during the day when I feel a bit tired and am in bed each night normally by 10pm.  That generally gives me 8 to 9 hours of sleep a night.  Yes during steroid time I am up a couple of times a night, and am lucky that I fall back to sleep relatively quickly.

#14-Consider telling loved ones what you are going through.  Depending how private you are, you might tell your family, so that they will understand if you forget things you normally wouldn’t forget.  They may be able to help and encourage you.  The last sentence it so very true.  My family and friends are like my own cheering section.  Celebrating each success I achieve or do.  Some days it is celebrating eating every two hours, or letting them help me, even asking for help.  It is difficult sometimes for me.  It is so very helpful and helps me stay positive and enjoying my life. 

#15-Speak with an oncology social worker.  If living with symptoms of chemobrain, chemofog makes you anxious or sad, seek help.  This is so important as you don’t want to be anxious in how you feel, or what you remember.  Talking with people that understand what you are going through can be such a resource for you and help you feel not alone in this.  Talking with other chemo patients, my chemo infusion nurses and my oncologist have helped me and my family more than I can ever say or thank them. 

The brochure was put together by CancerCare – help and hope.

They can be reached at 1(800)813-4673 or visit www.cancercare.org or e-mail info@cancercare.org

Peritoneal Cancer Journey - V

Phase V

Okay I am having a Chemo Brain/foggy moment, <wink>…   I’ll explain why that is in a moment.  First I want to share what my sister and mom found for me.  We all had and have fun with it.  My mom goes to Roswell Cancer Institute for regular check ups as you can imagine (5-time cancer survivor), my sister went with her that day.  While checking in with the clinic Barb noticed a Brochure, which made her laugh at the title and picked it up to show my mom.  The two of them were laughing to the point of tears to their eyes as the title is “Fact Sheet – Combating Chemobrain:  Keeping Your Mind Sharp”.  Earlier that week we were laughing and joking at lunch about this specific topic “Chemobrain", we also refer to it as Chemofog, call it what you want, the fact remains that it exist.  My mom has experienced it, my sister Barb has and I surely am.  The fact sheet really has a number of helpful hints that I want to share and have included it on my blog page with Cancer Cares contract information who put the brochure together.  The first time I saw someone outside of my family laugh at Chemobrain was one day during my first round of treatments.  A woman preparing for treatment was going to take her e-mend pill.  When she punched the pill out of the pack nothing came out so she thought she received a defective pack.  She asked her husband to run over to the drug store and get a new pack that had all the pills needed.  He left and came back a few minutes later saying he probably should have the packet to show the pharmacist that there was no pill.  So the woman stood up looking for the packet and the two-color pill fell off her lap.  She said oh look here is the pill, he responded oh Chemobrain!  Lynn and I looked at each other not sure how to respond to that, then she started to laugh and say yeah…  Good thing I stood up how embarrassing would that be to have gone all the way to the pharmacy to get a corrected pack to only find it was in my lap…  A number of us laughed at that point as we have experienced chemobrain/fog and could relate.  I had not seen another family like ours deal with chemobrain/fog with humor.  It was a relief that they did too…  Her husband is so supportive and tried to help other spouses who were struggling maybe a bit.  That was really nice to see.

Okay, back to why I had a chemobrain/fog moment.  The dates and what happen do roll into one big adventure…  I can call it my Big Chemo Adventure and an adventure it is…  I do laugh a lot and find humor in many different situations I find myself in, as does my family.  What I wrote for August 24 actually happens with my treatment on September 21^st.  Today August 24^th Doxel was available for my treatment and my daughter was with me that day <smile>.  My CA-125 number when down from 3500 to 2800, yea!  I am feeling good.  So ready for my infusion, Megs and I have a coffee and a dunkachino thing plus snacks.  So I am psyching myself up that the infusion is going to go good (it is the red fluid thing again, can’t watch it going in).  I looked at Megs after they sped up the drip of Doxel and asked if my face was turning red.  Of course it was, she said yep.  I am reacting to it again, damn and Megs is with me this time.  Hopefully the nurses will be able to get it under control quickly like they did the last time.  She has not seen a reaction and I worried how she would handle this.  From the outside it looks really scary, I’m really flush, labor breathing isn’t pretty.  The nurses kick into another gear, stopped the infusion, gave me oxygen, more steroids and Benadryl and we waited.  The symptoms subsided, and yes the drug was re-introduced with no problems!  Phew this is a relief.  Megs seems to be okay with the whole experience since I am not reacting anymore to the drug.  A number of the other patients commented how much better I look now.  Yes, I feel much better too.  My doctor came into the infusion room to check on me through the rest of my Doxel infusion in between patients.  Because I am doing fine after I receive another dose of steroids and Benadryl it was recommended that I increase my steroid consumption before treatment from 2 pills at 24 and 12 hours before treatment to 5 pill 24 and 12 hours before.  Hopefully that will do the trick.  So much for sleeping that night after chemo as I will be on a steroid high.  The upside is I have lots of energy so I cook after work and have leftover stuff for the weekend that I may want to eat. 

I have my blood work on September 5^th; on the 6^th I received a call that my hemoglobin level was just above 7.  Normal is about 12-15 for a female.  The nurses at the infusion clinic in the past would call me at home and get our voice mail.  Then they decided to try me at work and laughed when I answered my phone.  They asked how are you out of bed?  I responded I feel a little tired but over all not bad and work helps me.  After that 1^st call they now call my cell phone and if I don’t answer they call me at work.  I am schedule for Chemo on 21^st, so again there is concern if my level would improve enough for chemo by then.  We are not sure as I have only had 2 Carboplatin/Doxel treatments and I already need a transfusion.  My doctor is recommending a transfusion this week and I agree, as I don’t want to miss a chemo treatment.  So my transfusion is scheduled from Friday the 9^th.  I have had 2 other transfusions in my 1^st treatment round last year and by the end of the each weekend I felt better.  I am a bit short of breath and feel a bit tired.  So a transfusion will get me ready for my next treatment.  Hopefully it will be like the last time and a transfusion will help me for a few treatments.  So getting transfusion it will be.  Throughout my experience I have followed my doctor’s recommendations and have only experienced one delay in my treatments.  That was due to my white blood count being a bit low and the only thing that helps that is rest.  I did get a neulasta shot that helps white blood cell count after that so I didn’t have that problem again after that.  For this transfusion my daughter lent me a book to read “The Help”.  I am looking forward to 4 hours of nothing to do but read and relax.  The transfusion went fine, no problems, and I slept for a good nap after words.  In a day or two I will be a bundle of energy and great color in my cheeks. 

Peritoneal Cancer diagnosis journey: Peritoneal Cancer Journey - IV

Peritoneal Cancer diagnosis journey: Peritoneal Cancer Journey - IV: Phase IV I am so grateful that I am able to work most days, the only day I am not working is when I receive treatment and the weekend...

Peritoneal Cancer Journey - IV

Phase IV

I am so grateful that I am able to work most days, the only day I am not working is when I receive treatment and the weekend following my treatment.  Other than that I am able to do what I want and I rest when I am tired.  I have wonderful support and am healthy and I love to work.  It keeps me feeling normal, like everyone else.  I just have this one hiccup in my life and it is my CA-125 numbers that are high…  I am ready to begin my next treatment with hope and confidence that this will get me where I need to be…  Ready?

On to Carboplatin and Doxel.  I received my first treatment July 6, 2011.  I am ready…  Lynn was with me, we got comfortable, had our coffee and snacks, ready for the 4 hours of infusion .  I got my dose of steroids, Benadryl and took my E-mend for the platin drug.  They started the Doxel slowly and all is going good, not liking watching the red fluid move into me, such is life.  When they went to speed it up however, I started to react, my face was flush, breathing was labored and I thought oh no here we go again…  Flash backs to my allergic reaction to Taxol last year.  The nurses stopped the infusion, put me on oxygen, and gave me more steroids and Benadryl.  Where I have my chemotherapy infusion is right at my GYN oncologist’s office.  So when I have these reactions my doctor is right there to help get them under control.  That has proven to be very comforting to me and Lynn.  Lynn was with me the time I reacted to Taxol and now she is here with me through this one.  Oh lucky her…

While getting my pre-chemotherapy drugs through the IV, I was chatting with a young woman who I found to be very negative about the whole process she was going through.  I had not seen her here before and am use to other woman that I’ve met in this process; we chit chat about what we are going through and help each other with what is working to manage side effects and such.  I quickly learned that she is struggling with her diagnosis and treatment.  It gave me the impression she wants to be a martyr through this and not everything was adding up that she was saying.  Especially based on my experience with the same Doctors and the infusion nurses.  She commented that she is experiencing considerable pain with her treatments, I asked if she told the doctors and nurses, she said they told to just deal with it.  Now I have talked with the Doctors and nurses about different issues and not once have I been told to just deal with it, so I said that to her.  She didn’t respond back.  She said she hates that she is the youngest one here all the time.  Yes I will give her that, she is younger than me and many days I am the youngest too, but that does not bother me at all and I know there are younger woman than her receiving treatment here too.  I generally enjoy talking most days with everyone that I have met there.  She asked if this was my first treatment and I said yes on this combo that I am starting today.  Then she asked what other treatments I’ve been on so I told her.  She stopped complaining.  Then I reacted to the Doxel, the nurses pulled the curtain and started to work to stop the reaction.  That ended our conversation and honestly that was a good thing for me.  I don’t want negative people around me, life is to short and some people do not want to know how to get through the treatment positively they are doing it their way and that is fine.  It is an individual journey we are all on, I prefer to be positive and talk with others in that positive light.  It helps the time pass and we have had some interesting conversations to say the least.

During the reaction when the symptoms started to calm down, my doctor approached me and asked how I was feeling.  I hesitated because I knew they would re-introduce the Doxel once I was not symptomatic and having an allergic reaction is not a good feeling.  This was the only time he said you don’t look confident with the treatment.  I said no I am very confident about the treatment, I am just nervous about the reaction because the last time I reacted was with taxol and it was re-introduced three times and my reaction just kept getting stronger.  He thought for a moment, then looked at me and Lynn and said with a straight face “Well no one had died from it” and turned and walked away.   I turned to Lynn and said; huh do you think that should make me feel better…  We both chuckled a bit, he does have a very dry sense of humor which both Lynn and I enjoy.  We find him very funny and entertaining.  I was nervous to say the least when the started the Doxel again.  They started it slow and the one infusion nurse pulled her chair close to where I was to monitor me.  When I react I get flush in the face first that spreads to my neck.  Things are going good, no problem so now it is time again to speed up the drip.  Still no problem, I feel a little dizzy but that is from the steroids and Benadryl.  The nurse agreed so I decided to take a nap through this.  I didn’t want to watch the red fluid flow into me.  So I got my iPod out and listened to my favorite music list “momma’s Jam’s”.  It has all my favorite upbeat song that just builds me up and keeps me happy.  When I woke from my nap the Doxel was all in me and I was starting the Carboplatin.  All right one down now I’m flying.  Woo Hoo

No more problems with Doxel!  Or so I thought.

My next scheduled treatment in August 3, 2011 showed my CA-125 number dropped, what a relief that is such welcomed news.  The not so welcomed news was that they didn't have any Doxel.  They were trying to find some in the Buffalo, New York area and the only place that had some was one of the Catholic hospitals that shall be nameless in my Blog.  I was shocked, this how could this happen, what caused the shortage, when will they have more?  So many questions.  What does this mean for treatment?  He said we will proceed with the Carboplatin and hope we find some in the next few days to call you back in to complete the treatment cycle.  It was mentioned this is a short term problem, something about OSHA violations where the drug is manufactured.  They even talked about admitting me to the Catholic hospital that will remain nameless that would not share the drug just to get me the infusion, but they were having a hard time coming up with a clinical reason to admit me besides needing Doxel.  Well there was no call, so no Doxel for me with this treatment.  I went to work after my infusion as it was only a couple of hours and I felt fine (Steroid high for the next few days). 

A week later this news report came out talking about the drug shortage and it is not just Doxel, it is more wide spread than that and 15 deaths have been tied to this drug shortage:

http://www.cbsnews.com/video/watch/?id=7377522n&tag=mncol;lst;9

The problem range from contaminated materials, to not being able to keep up with demand to profit, not enough money…  Hmmm Doxel is off patent and profit obviously is coming into play as only one plant in the US makes this drug.  Being a Chemo agent I am sure is complicated to make…  Makes me very worried about Doxel and how long this shortage will really last.   I am happy that finally someone in the mainstream news is covering this maybe this will help get the attention needed as this is not good for any of us.  It is creating a black market or gray for these drugs in short supply and the holder of these drugs are marking them up 600%.  Talk about gouging.  

There was still nothing on how long the Doxel shortage would last, I am not finding any information readily on it.  It is honestly scary…

August 24, 2011 was my next treatment and my CA-125 number dropped again, all right we are going in the right direction.  I had to push from my mind how far would have my numbers dropped if I were able to get the Doxel…  No sense focusing on woulda, coulda situations that does no good.  Well it continues no Doxel again, damn…  Going with Carboplatin again and I was told to call each day and check as they were expecting a shipment any day now.  Sigh, okay like a good patient I called each day.  The nurses said they would call and I said great, but I am following my doctor’s advice and will call each day…  So be ready to hear my cheery voice.  We all chuckled because they know I will call.  I guess the upside is the infusion was only a couple of hours so I’m working from home day of treatment to keep myself busy.  I am still not able to find anything about the Doxel drug shortage that I am experiencing with my Chemo treatment as are other patients in the area.  The doctor did mention to me though in passing that his infusion clinic shared some of their Taxol drug with the Catholic hospital that refused to share their Doxel with him.  I asked if he thought they learned a lesson about sharing, he didn’t say anything, just gave me a look that made me laugh.