josied's Cancer Blog

February 14, 2008

The happiest of Valentines day..lets all find a way there...

Views: 286

Valentines I have always felt is full of tooooooooooooooooooo many expectations….but looking at things a little differently these days….every day and each little holiday I am healthy and here able to be a Mother, daughter, sister and friend to so many whom have loved and supported me is incredibly special.

SO Happy Valentines….whereever you are in this journey…find that place of joy in heart it is something we all need.

My breast cancer was 3.8 on the her2 protein scale…I believe the highest number is 4…of course there is a margin of error. When I finished my year + of herceptin infusions(which for me were rough)Remission…survivor living without the weight of the fear these have been very difficult for me. I am normally very upbeat positive person…I have struggled with so much of this the past 5-6 months. I do still struggle with issues from treatment and have had 2 large reconstructive surgeries that I am still recovering from…..I keep waiting to have the energy to come back….where is it???

It seemed after the holidays I hit a real low….tears, fears, sadness, anger…..I do not know that this is normal…but I do not think it is abnormal. I took a break of trying to be so focused on trying to say I am in remission and I am getting back to normal. My son took a little visit to his Nanna and Papa’s and I focused on many things that for me help get my head around alllllllll that had happened to me, my son, my family etc. the past years. I suffer from lots of guilt ranging from being sick, needing help, not being able to be the Mother I wish to be etc. I read this book eat,pray,love…...as well I used many of the survival tactics I have always used throughout my life prayer, meditation, laughter, dancing, yoga etc. ! We all have resources that bring comfort and confidence to us and the strength to make it to the other side….whatever that resource may be….even a bucket of ice cream ???! At any rate, my days have moved forward and I had full body, brain and bone scans and I am and I am saying it loud in Remission. Does that mean forever??? No…but I can now speak it and not be afraid that this will make cancer come back…I am embracing my son and my days. Working through healing which with my Doctor’s help I have and feel that I can allow myself this time.

I had no idea how long this road would be and that really nothing is the going to be the same and cancer will always be a part of my life, but how and what will be my choice. With much prayer and encouragement my hope is to use it to make me stronger…I have endured much and those around me have as well…..fists up we will never give up. For a moment I was not certain that I could handle anything else “big” coming at me….truly this is what fear does to us. Get rid of the fear, what can it do but stiffle you anyway…..embrace the joy you have control and possibilites of embracing.

Boy when I blog I go and go….forgive me many times I write late at night….so my spelling etc. seems to need help…I cannot find spell check anyone???? Hope this helps someone…..it helps me!

January 19, 2008

The Other Shoe

Views: 467

In the days I/we had figured out how to move forward and that laughter and prayers were going to be our greatest allie throughout this fight….the other shoe dropped. My complete pathology reports came in and yes, my left breast mild ducts were covered in DCIS, but in the midst of that tissue there were 2 mm of invasive IDC cancer(invasive), lymph node involvment not likely, but it was very aggressive in that a protien HER2 which attaches to cancer cells and causes them to multiply at an even faster rate….so I had zoom zoom cancer. Mastectomy was my only choice with full course of chemo and then maybe radiation.

This brought a new thing to the table with it no longer being stage 1a it was now climbing close to being in the 2 category. More tears, more fear, but really I did not feel helpless I tried to laugh more than cry and research and read. People sent me books, my Pops, Mom and my Sister sent me books and articles etc. During this time prior to my mastectomy surgery I had come to the conclusion that I would do a bilater mastectomy. My understanding seemed in more cases than not DCIS showed of 5 years later in Breast number two, plus I had the lovely HER2 factor. I talked to my surgeon, whom by the way is a man(I am a female Doctor gal), but he was and is tremendous how he handles you and your family and this cancer reality. Doc and I talked and he had not recommended a bi lateral Mas to me, but when he heard my words he was in complete support no questions asked…....plus I had decided to have immediate reconstruction. My thinking at the time was they will already be in there and this is one less surgery. I did not realize the level my immune system had been beat, it was I found a little too much for my system to take on so much…..!

Getting your boobies cut off as I was always calling it is a big deal…..and yes not making light it absolutely is….my parents, my sis flew in from ct, my brother and his wife all there for my surgery….The nurses at my hospital whom were preparing me were so incredible. MY sons Father had sent me “the love monkey” to take into surgery with me and it was very important to my little boy that I take that to the hospital with me. We were all laughing the nurses, my whole family crammed in this little pre surgery cube and I became suddenly overwhelmed with the reality and gravity of the situation….I got a bit like well hyperventalating…..one gracious nurse Monica held me close and helped me get my breath back and to calm before we headed out. I was able to laugh and cry again after that with my family whom you know just do not know what to do, but want to make this all just go away. It is very hard on them to watch you and also be scared of all the whatif’s. I was being wheeled off Monica the sweet nurse stayed with me and I remeber gentle tears flowing in a peaceful way…....I had to get this cancer out of me and that was the only choice.

I woke up from the surgery as I remember happy and well a little on the arrogant side. I insisted my Sister help me out of bed with my Ivs etc. and I wanted to see it….the nurse came in and said no the Doc wants you to wait to see him first….I explained that I was not doing this for the Doc and it was my body and I am the boss so to move out of the way and I will see….and I did…with my bum showing to all…..I know a sight my family will never forget me fighting for what I wanted bare butt and all :)! It was fine, it was not so upsetting to me I think knowing that nasty cancer was cute out and this is the way it is was reality and I could handle it…! I also, did have expanders put in, which is what the Plastic surgeon puts in after the tissue removal to help grow more skin for future placement of implants etc. So I had breast mounds just not nippled etc. plus I had a chunk from under my left arm taken (lymph nodes).

Next, what I would find out about my no it is not cancer, no it is not invasive cancer, ooohhh yes it is cancer and yes it is invasive cancer and no it is not in the lymph nodes…..guess…it was in my lymph nodes 3 out of 11 pulled….that tiny 2mm of invasive cancer had already spread to my lymph system….the invasive cancer that was in my lymphs was larger in size than what was in my breast tissue. all in mm but larger amounts…..what that told me for certain was this cancer wanted to dance all around my body if it had the chance. Right then and there I thanked God for that Mammo and the previous Mammo’s In Ca for otherwise we may have said lets watch this for 6 months and most likely in my cast that would be toooooooooooooooo long and tooooooooooooooo late.

There was good news. I made it through the surgery no problems….I liked my morphine drip on command while it lasted(24 hours) and my right breast tissue was completely clean….no enemy cancer….hooooray!

THIS IS VERY IMPORTANT…..get copies of all your labs, your pathology reports, scan reports etc. you will want to go back to them in so many instances as you start to understand your DX more and you will want them to be able to share with Doctors, patients maybe just keep it…I keep a notebook with all that info in it and continue to keep scan info and blood work today in it. I was also able to get many of my pixs and films on disc to keep with me as well…..!

Next I moved on to making a choice for an Oncologists. My surgeon made a referral and unfortunately my Sister in law’s Sweet Mother was going through this 6 months ahead of me and she seemed to really like her Oncologist(whom was the same lady). I did some research and reading about her we had a consultation and I said not when but right now to the chemo(it was a standard protocol I had already familirized myself with and was scared to death of….but lets do this)...we had to wait a few more weeks for my surgery healing…in the midst of this after I had gotten 1-2 fills in my expanders I began holding fluid around the left expander…..Doc2(plastic surgeon) was having a hard time removing….we got most of it out…..within a day or so I looked down and a red, heated infection was literally crawling across my chest. Emergency get to LIT have surger first thing in the moring to remove those boobies….again.

Well, thankfully we got through this and although I had a new concave strange looking chest….there was not further infection and I was soon able to begin Chemo and would deal with reconstruction later. In the midst of all of this I was working hard to arrange a second opinion on my prognosis and treatment….which I had been told was good. I decided on an expert with Sloan Kettering whom had done a lot of research in premenapausal cancers(me) and agressive cancers in regards to HER2 protein and the herceptin treatment(which in my cancer which is not considered mestatic or in high stages I was staged at 2a…had just begun being used in my curcumstances, 6months to a year earlier you have to be going through either non responsive to treatment original cancer or a metatsized cancer so cancer number 2 in a way to get to use this drug. Certainly, I can say I was so thankful for this.

I had my first chemo Adrimyican/cytox AC as is called….and I was given all the meds to keep you from getting so sick. I was fine through the 5-6 hour infusion, made it home on the 1 1/2 hour drive got in bed, laughed, fell asleep and woke up thorwing up so very bad. My parents were asleep upstairs in my house and had given me a bell….I rang the bell I tried to go up the stairs, but could not and just sat there trying to get them to hear me…I was vomitting so harshly I thought I may choke. My Mother did hear me and came and got me and a bucket in bed and was with until daylight. We called my oncologists, by this time she wanted me in LIttle rock immediately I wanted to go to my local er and have her send the orders b/c I did not think I could make the ride. After sitting in a room shaking from dehydration for an hour my Pops got me put me in the car and floored it to LIT…where they met me on a lower level where the chemo lab was and hooked me up with good stuff for a good part of the day.

Again, I started researching and learning about all the variety of annti nausea meds and how to time them out to keep you from getting so sick like that…this is how it works with standard insurance they want the Doctors to use the least costly and somewhat successful meds before they pull out the big guns. This just disgusted me…..shouldn’t I be the one with the option?? I am paying for the insurance, paying the co pays and the out of pockets…..and in the past have always been senstive to POISON! I came with my list of meds for my Doc the next treatment and she totally agreed…...she is a great Doc believes what her patients say and does not believe there is any reason for you to have to suffer or be in pain if we can keep from it at least through all of this treatment. Not all Docs are like these, I know those whom have had Docs who dont listen and act like it is in their head and do not want to give them the meds that will work for them….it is a different cocktail of meds for all of us we are similar in our chemistry as humans, but vastly different.

Before my next chemo I was going to NYC to Sloan Kettering with my Brother and my Sister(she lives in CT close to city) to get my second opinon. This trip was fun for us….we were silly….we went to David Letterman I wore my new long black wig(my Pops calls my Elvira wig) and it was so fun I felt like the mystery woman and although at that point I believed I had Cancer tattood all over for everyone to see…..no one was the wiser I was just a lady with long dark hair. My hair was just starting to thin from the chemo….but I had already gotten my wigs and wanted to show them to my Sis.

The specialist in NYC was in almost complete agreement with my Doc. There was one drug that was a sister drug in my second chemo protocol that was going to be used and he recommended the sister…they left if up to me….and there was still a question as to whether I would have radiation…he said no question full rounds of Radiation b/c my margins were clear, but the cancer had been right at 1cm from my chest wall and very aggressive…no question to do radiation. My Doc had also concurred with this once they had spoken and reviewed my case wholely once more so we had a plan and it was going to take a year and a half….hellllllllo!??? Yes, thats right 4 a/c chemos every 3 weeks and 4 taxotere/herceptins every 3 weeks with an additional year of herceptin infusions…..in the midst of this we would attempt to do my 35 or so radiation treatments if my body could handle it!

One thing I want to emphasize at this point is every hospital, lab etc. has a different “standard” for clean margins. Clean margins are how far out beyond the cancer site they go and find NO Cancer….you want that to be a desent size….some never get clean margins. This is something worth researching and comparing to other cancer centers what their standard is….I personally believe there should be a standard across the board…that way one being DX in NY and one in TX test results etc. are understood correctly by all….second and third opinions are very important. There are many cancers out there….there are many combonations of drugs to try…..find what is best for you…..do not be afraid you are your best and sometimes you only advocate.

I have to say I was lucky during the hard core chemo treatments( the first 8) I had few set backs. I had low counts, never so low where they would not do my treatment. I did the horribly expensive injections the days after chemo that made your bones just ache. Really the first few days after chemo were a blur to me….I always told my Mother do not let me talk her into letting me go try to make purchases etc. during this time…my desicion making ability was highly questionable at those times. A/C would kick my but for 7-8 days literally getting back together and BAM its time to go again. the Taxotere/herceptin was more 5 days and functioning better….but bone and body aches….really wore me out. No matter, I did try to go to chemo and laugh and smile…what other option do you really have…..being angry just makes it harder for everyone. It is ok and natural to be angry I found going under water in the bath tub and screaming and kicking always made me feel better…..plus my little boy was at home I did not want him to hear me screaming….its a fine line with a child….he was and is very aware that something is going on and not right…Momma is not dancing and singing and running around like that crazy chicken anymore….he learned Momma was a bit physically weak and a lot of our time was more quiet than it had been before, but I believe he always felt secure that I was there and his family surrouned he and I in love and support…I am certain he has had worries, but believe he has known everythings gonna be allright….he would often ask me where is God and I do not like the dark….and I just tried to tell him God is everywhere….just put those worries to him, ask him to take your hand and help you through….one night I looked in his room he was in his bed lying down holding a hand up in the air….his faith and trust in that Supremecy was evident and it was helping him.

I am going to end this blog today saying its tough and people want to help and it is hard to ask for help….if you have the ability to help a person going through cancer truly the best thing and I know it is hard it to just come in and do it…cook, clean, change the bed linen, etc. do not ask how or why just let them know I am here and I am doing this….in most cases they will be so thankful. And phone calls, dealing with organizing bills and insurance papers etc. boy if you are close enough to the person sitting down and spending an hour or so each week on this is so helpful….b/c you are no where near 100%....I found as a single Mother of a little one I was all there was and I was a bit of a withering plant and I struggled knowing how to ask or accept help…..in my situation I wanted my son there with me, but I needed and need to heal and get a lot of rest….so people helping in ways like picking him up from school taking him to a movie etc. I was very cautious about getting out…b/c prior to cancer DX my immune system was blown anyway. I did end up with pneumonia last April…..that was a bummer!

I hope this blog is beneficial to someone anyone….if nothing else to purge this is great form of catharticism for me. By the way, I have been out of treatment for right at 6 months and I am getting scans every 3 months and my second set of scans just came back NED...I have been finding it very hard to say I am well, I am in remission, and get on with it….and I know this is ok and that I will get there…..I have said it a little more this week….fists up we can never give up…..unitl next time!

December 17, 2007

In the beginning

Views: 544

Breast Cancer??? Not even…...was the thought in my head. 2005 was a year full of difficult decisons. My little boy and I left CA to go to AR to be with my parents b/c my husband and I had separated. I commuted to work to Los Angeles for sometime. When my divorced was final I continued to commute, but to Atlanta. I bought a house, moved our things etc. My son was only 2 at the time of our separation, so I was very sensitive of the affects this all had on him. To say the least, I was under much stress….I had not been feeling well…just not my self and had found a good Doctor in AR. I had been to see her several times, some ER visits….when Doc suggested lets go ahead and do your 40 yr old Mammo a little early…like a month….I was in complete agreement lets go…..in no way did I even consider the idea that I had breast cancer….although, I did sense something beyond just stress was wrong with me.

In my early 30’s I had breast pain in my left breast(intense) and I saw a breast surgeon for a year. After Mammo’s, ultrasound, monthly visits, it was concluded that I had the phenomena of breast pain, which is not uncommon. When I was pregnant with my son( I did breast feed for 9 months) and the year following, the pain disappeared….around the time he turned one I started noticing the pain again. My OBGYN in CA did not find anything and neither had I. I did have many health issues that year. I would run low grade fevers out of no where, throw up, my neck would go stiff then my speaking would become challenged….and the fevers would begin etc. I was seen and tested by many Doctors and evenyually told it was thought to be a Parvo virus that many adults have, but less than 10% ever know it….and my counts where consistently high when tested for this virus. At any rate…..my Mammo’s from my early 30’s in CA were sent to the Womens center in AR and when compared there was a drastic change. My Mammo was on Dec. 7, 2005…..the call I recieved at about 4:30 on Dec. 19, 2005 from a wonderful Nurse…..whom was very reassuring. I needed to go and have a magnified view done ASAP….I had a feeling,intuitively, this was not going to go well. I remained full of hope and refused to give into the negativity. After the Magnified view the radiologist came into the room and spoke with me and explained that in his opinion the read was at a level 4 of concern which means take it to the next level…..he recommended I have an MRI of the breasts. I was in Little Rock at Baptist Hospital Dec. 23 for the MRI. My Doc was out for the holidays, but had given me the number of the Doc on call and my info was to be forwarded to him. The Doctor was very kind to me and explained again, the results were not definitive, but there was increased blood flow in the left breast. A lumpectomy was definitely necessary. Jan.3 I met with an excellent Breast Surgeon in Little Rock, I had turned 40 just days earlier.

At this point…..I DID NOT have a LUMP IN MY BREAST…I had calcifications which seemed to have a pattern….Calcifications are very common….caner(20-25%)in this form…not so much! Each Doc I saw remainded convinced that this was not cancer with my age, my overall health, family history…..the chances were so unlikely. Jan. 11, 2006 I had a needle loc lumpectomy…the lower tissue of my left breast was removed.

My Mother and I were in my bed and my Dad was in a comfie chair in my bedroom the evening of the lumpectomy. My Surgeon had told me he would call and let me know Cancer or no…but would not have the full info until a few days later. I had flown with my son to CA a few days prior to spend time with his Nanna and Papa, thank goodness. The Doctor called me and very surprisingly to he and to I, said it was Cancer. Good thing it seemed to be Non invasive! Good thing passed me right by….I thanked him and hung up the phone and kicked, screamed and of course, asked God why me??? Why Now???? My Mother was a pillar of strength , although she was in complete shock…..she and my Pops had been certain it was not cancer. My Pops was just loving and encouraging….letting me scream and cry like his baby daughter, I know he was devastated. Several days later he was sitting on my couch and it was dusky, I went in and just shook my head and layed it in his lap….and that is the only time he just cried just a bit.

All I know is we kept saying it is non invasive….this is good….but in no way could I accept or wrap my head around it…all I could think of was my little boy. My parents must have been doing the same thing about me…..for my child to be DX with cancer is unfathomable to me…. They both have said repeatedly throughout all of this….why could it not be me??

I just remember I felt so out of control. Desparate for information. I had been quite active in Breast Cancer fund raising functions…even did the 3 day Avon walk when I was a whale of 6 months pregnant….and I mean whale….slept in a tent….showered in the trucks….walked almost 20 miles every day. I felt like I knew some things about breast cancer….one thing had never really occurred to me, I could have BC without having a lump. I did monthly exams…..there was no lump…Mammograms are so very important.

The C word is truly something I had a great fear of….really, I thought about it and knew I hoped to never have Cancer….it was not something I dwelled on, but I did think about it….not certain if that is common??! After Jan. 11, 2006…...for a good month I was afraid to go to sleep, I feared I would just die in my sleep. It was a difficult time….but at some point….I stopped asking God why and said the proverbally, “well why not????”

This is when I decided to put my hand in his, to educate myself in every way possible about this disease and how to kick its butt! We started to laugh again, forget about the difficulties of the past year or so and just focused on the task at hand. A little boy who is about to turn 3 looking up at you just saying “your boobies” are sick?? Its going to be ok Mommy…...he seemed to really take up his Doctoring skills at that time….. he had a sense(he truly does talk about his senses).....he still watches and checks me with his stethoscope and recently told me soon Mommy no more Doctors you will just need me Dr. Ralei, I will take care of you. The other shoe still had to fall, but I was moving in a forward manner and had the love, prayers and support behind me. I had decided to be very open and share as much of this with whomever may wish to know in case one person may learn anything from my figt with cancer; in a group of incredible family,friends, neighbors, strangers….community…we were definitely being uplifted by the power of something I had never been so acutely aware of before in my life. This kind of support is powerful on so many levels….fists up….we never give up became our motto.

December 7, 2007

Is it over yet??

Views: 552

Ok, I have not done a great job blogging….normally I would excell at this…..I will do better. I have been in the midst of my second attempt at reconstruction through DIEP surgeries. I just returned from NYC again a few days ago for the second of what is to be a 3 surgery process maybe 4. I have rebounded really well…Dr. Levine states I am his “Poster Patient” well….I do my best I am in this to win…survive and move on and hopefully advocate and help others through this long road. Its no problem that he is at the top of his game in his field and has such a gracious spirit.

Diep reconstruction is fascinating and not a form of recon lots of people know about…if anyone ever needs information I am happy to share, we have kept a log of photos from beginning to hopefully soon end of my processes through cancer and recon which we plan to put together on cds/dvds for local physicans and surgeons to use to share with patients b/c it is only fare that everyone everywhere know the options that are out there….I am happy to send any info or pixs that may be helpful privately until I decide where to publicly format.

My little boy is such a champ, excited about the holidays and that he believes Mommy is even closer to being able to sword fight again…...this I am not certain of….but I am so ready to be able to be more active!

Ok I am back and really want to do this…I know I need to face what alllllll has happened on this long road and accept it , continue on in a healthy, positive way. Sometimes, for me anyway, it just seems like the last 2 years, no matter how ill, weak I have been its just been non stop….doctors, treatments, scans, resting, meds, research that maybe I really have not totally dealt with the reality of how much my self and life have changed. It is important at some point to take stock and realize this to continue forward…. THis I believe may be one of the ways to accomplish that for me anyway…maybe…I can encourage someone along the way. So many days I have found myself wondering ok when will things go back to normal?? I know now there is no normal and to consider “normal” is quite a bore anyway right?? It is a fight, I guess it really never ends….maybe slows…..My little boy says…soon Mommy no more Doctors for you ever…just Dr. Ralei (his name) I will take care of you…..shouldn’t it be me doing that for him….what a joy he has been and he is whom I fight for, fists up we never give up!

Have a fantastic day…sorry for the rant I am still having to take some pain meds and just feel a sudden accomplishment to be where I am today. 2 years ago today I got the early before 40 Mammo that DX with BC….in between my Mother having a stint put in her heart and my Sister in law being in the hospital on her birthday…my brother kept calling me where are you??? I had the bday cake…..I just remeber telling him….I am getting my boobies squished I am right next door…just give me a minute….I am so glad I took the minute that day!

October 8, 2007

trying to blog on....

Views: 707

This blog is going to back track I have done an email letter throughout my treatment and healing….I hope I am able to do this so I can share and interact and learn for all whom are in a similar place. My little boy asked me last night if he was going to get cancer…he saw a little girl on television whom was bald and had cancer. We have decided we will do what she does and take stuffed animals and toys to the Children’s cancer area. It was such a hard conversation to even think of my beautiful little one ever going through Cancer…..littls souls so brave. I will get better at this I know I can do it!

October 1, 2007

In the beginning of blog

Views: 774

It has been suggested to me a number of times the past few years to begin a blog…..so, well, here it is…we will see how it goes!

Currently, I am 4 weeks and 3 days post, first of three, Diep reconstructive surgeries! Hip Hip Hooooooooray! It is going well….I cannot say I am up and running with my 4 year old son, but I am working on getting there…..Ralei is certainly making me laugh and enjoy each day so I am healing quicker. We are so blessed to have Nana and Papa here from CA, they have been such a huge help and encouragement. It is so very generous of them to be here with us….its not easy running after a never sleeping, always singing, dancing, playing, emotional and exceptinally loud and lovely 4 year old boy, 2 puggy’s and a Momma whom has to be very cautious with the entire trunk of her body, yet is always having to be reminded of this and many activites that may need to wait….ervaaaaay!

I am feeling well. My Oncologists gave me a clean bill of health June 25,2007. I completed my treatment protocol a year and a half of chemotherapy, 35 RADS, 5 surgeries with 2 more to go, broken ribs(and not from snowboarding:)) a major infection and pneumonia and 3 trips to the ER…one a week before my 8 hour surgery, a sharp light fixture fell and went into the inner part of my “bad” arm right at the elbow…..and it did not hit an artery, vein or tendon! IT is head spinning for me to think about, but I am up walking and talking and enjoying each day as always. Not cooking much lately, and my veggies and herbs have suffered this year…..not getting to be the Earth Girl I love to be.

I have scans on the 12th of this month…..the first since I have been without treatment. My prayers are to be able to keep Cancer far far away!

There are a number of women I keep in touch with that are in different stages of their journey, their fight whatever they consider…everyone faces Cancer differently. It is a great thing to be able to reach out and encourage and share what you are able. My dear friend Noeller is doing the 3 day in Dallas again this year end of Oct. she is a true hero. My girlie friends and I will be doing Race for the Cure in Little Rock, which is yearly one of the largest. It is pretty amazing the flock of pink walking across the ARkansas River Bridge. Relay for Life will always be close to my heart we had such a great time Fists up this past year and raised lots of money for our county and the ACS!I will not have a team this year, as I am committed to other “focuses” this year, but I will work on the committee and do as much as possible to help make it a great success. Still, making “sock it Cancer” lavender and mint wraps…at a slower pace right now…..but will increase soon.

I will try to update the blog regularly and as always….if there is ever any way I can assist, encourage just talk with anyone that may be facing Cancer and especally Breast Cancer I am here and I want desperately to do for others in some way the many things others have done for myself and my little fella along the way!

Fists up…never give up! Later, tater!