Should I let me child’s teacher know that I am sick?

September 2, 2008

Another “shrink wrap” question and answer from Kids Konnected and Lynnette Wilhardt….

Yes, I think it is very useful information for the teacher to have. Many children will exhibit different emotions during their parent’s illness that may affect their schoolwork.   Some children have difficulty concentrating, some may become tearful, and some may become easily angered and may take that out on their classmates.  It is important for a teacher to understand what the child is experiencing at home as this may impact their behavior.  The information allows a teacher to take it into consideration if they need disciplining or their grades are suffering. 

I chose to tell both my children’s teachers. For my child in elementary school I had a one on one conversation. For my teen/middle schooler at the time I emailed all of her teachers and her school counselor. I feel there are so many issues that middle schooler/high schoolers have to deal with and so many students that the teachers have to deal with that it just gave them a heads up. I also asked them to feel free to email me if they saw any concerns.

I feel that sometimes even after we do not look sick anymore it may still be beneficial to let the teacher know what they have been going through, espcially for our younger ones. My now 8 year old was still showing signs of stress and anxiety last year. The teacher just felt he was immature and not paying attention. I am hoping that he will have a better year and a more understanding teacher!!!

Lynnette Wilhardt and 2 of the youth leaders from our local Kids Konnected group are going to be on the Today Show this Friday, September 5th. They all contributed to the new book:

Love Sick:  Teens Journal about Growing up with a Parent with Cancer

Here is a link from an article in the LA Times on the organization also. As with all non-profits in these tough times – they are in need of support to keep helping children and teens who have parent with or that have passed from cancer. They have groups around the country but need donations to keep them going as well as donations to send kids to camp and to send out Hope the Bear packages.

Please keep them in mind if you are looking for a way to help …..

Journaling in Color

August 8, 2008

Journaling is not new. Blogging is a new form of journaling. For those of us right brainers journaling in color or even without words is also effective. I have been using this quick way to process my daily emotions for awhile now. When I listened to the Dateline special on Randy Pausch I especially liked the questions he asked his children at night. “What was the worst part about today? and then, What was the best part about today?”

I ask myself these same questions, only I answer in color:

What was the worst part of my day?

 What was the best part of my day?

How am I feeling right now?

What is my hope for tomorrow?

It is a very quick way to get your emotions of the day out onto paper. Sometimes I write at the bottom what I was expressing and sometimes I just put the colors down, there is no “right” way to do it.  I like oil pastels as they blend when one color goes over another, but you can use colored pencils, markers or crayons. It is more about the process than the end result. The most important thing is just to express your emotions. This method can even work with small children. I used to take my sketchbook to chemo with me. I usually could not read words for very long after the chemicals started as they induced migraines, but it helped to just express myself with c o l o r

After I read Nicole’s post today… I thought they could all use a few minutes with some color to express their stress of the day…..

The News So Far…

August 1, 2008

Hi everyone, well on Thursday night, (last night actually), I had an appointment with my oncologist. I went in and sat down, he had a lot of papers in front of him that he was perusing as I sat and got settled. He looked up at me and said “well, I have the results of some tests here from Peter Mac, it looks very good. I’m not a surgeon but it looks as though the tumor is contained in the pelvic area. It is pushing up against your bladder and about to attack your vagina.” (sorry to be so blunt but I don’t hold anything back on this site).  Anyway, he repeated that the test results look good – in terms of having the surgery. He reminded me that it is radical surgery and that he thinks that if they are going ahead with it, it will be within six weeks, could be as soon as two weeks. He feels so strongly that they are going to go ahead that he canceled chemo, which was due today, as he said that if they do want to go ahead with the surgery, they will want me to have some time off chemo first so we may as well start now. He did say that if they don’t go ahead that it won’t matter in the long term that I missed a few treatments. He feels that this surgery is the best option for me and then said that actually it’s the only option. The Avastin, which is the best the cancer world has to offer me, will at best only buy me a little time, whereas this surgery may save my life. Indeed it is expected to or they wouldn’t be doing it.

So, how do I feel? Well, to be honest I was a little overwhelmed at first. I would be being untruthful if I didn’t admit that the immensity of the surgery frightens me. The recovery is very tough, it includes intense rehabilitation, I will lose my bladder, so it means having another bag – I will literally be a bag lady! It means having my rectum/anus completely sown up, everything in my pelvis gets removed so it is partly a radical hysterectomy as well as all the other things, I am not sure about my vagina but I think it’s quite likely they have to remove that too! Don’t ask me what that involves and don’t ask me how I am going to cope with that happening to me at the age of 39.  I guess I will cope for Jack’s sake.  So, as my mum puts it, she wants me to live as much as anyone, except perhaps for my children, but she still can’t help feeling ‘at what cost?’ She knows she should probably be glad that it can be done and that my life can be saved and she is but she finds it just heart wrenching that this is my only option. I understand completely what she means by that.

Then, later, when I was finally completely alone, I started thinking about how close I have come to losing my life, to Jack losing his mother, I have tasted it, tasted the fear and pain, the absolute gut wrenching thought of Jack’s pain when I just ceased to exist.  When he couldn’t turn to me and say how sad he was feeling, oh the thought of what he would go through was just tragic. All these thoughts went through my head and then I literally had to grab hold of the wall because I almost fell to my knees in gratitude and hopefulness. I felt this amazing love and, well sorry to repeat myself, but gratitude well up and wash over me in waves. I thanked God for all I was worth. The saying ‘thou shalt not forsake me’ kept running through my mind and I’m not even a religious person, although I have always believed in God.  It brings tears to my eyes now as I relive that moment writing it to you.

So all things considered, if the surgeons at Peter Mac do decide to go ahead, I am willing and oh so grateful for this second chance. Losing some of my insides is a small price to pay to get to stay with my boys. When I honestly think about what I would go through to save Jack from that pain of losing me, I would do anything I think, as long as I could still walk and talk, then I would do anything. It is not about me, it is about him, I do not want losing his mother at a very young age to be part of his heritage and part of who he is.

I must remember not to get too far ahead of myself because this is only the Oncologists opinion and as he said to me “I’m not a surgeon, but it looks as though everything is okay to go ahead from these test results.” He also seemed extremely happy, happy that I may have this chance. He told me that if I had decided to go through with it, to try not to think about it too much and just do it. Probably good advice, but easier said than done. I was talking to my nurse yesterday, before I went to my oncologist, she comes to see me once a fortnight. Anyway I asked her whether she had met anyone else that had had this kind of surgery as she works in the cancer and palliative community and is in charge of the nursing side of things across the entire peninsula. She has only ever met/seen one person who had this radical surgery. It was a woman about my age. She looked as though she wouldn’t recover from the surgery but she did- as thin as a rake. The cancer came back though, my nurse couldn’t remember exactly how long after the surgery it came back but she was sure it was under two years! I know everyone is different but it just shows that even if I do have this surgery, there is no 100% guarantee that it still won’t come back, or show up in a different place. They remove everything they can so it has nowhere to come back to in that area, but it doesn’t necessarily mean it won’t pop it’s ugly head up somewhere else, does it? So I go into this with my eyes wide open, knowing that it is a good chance but not definite.  I also forgot to mention that the surgery itself comes with quite some risks involved and it could kill me.  However, I figure I’m dead anyway without it, whether it be in two years or now.  That makes it worth the risk I believe.

Anyway as soon as I talk with my surgeons and find out exactly what is going to happen and whether they actually can do the surgery, I will report back and leave nothing out.

Dense Breasts, Self Exams and Persistence

June 6, 2008

I had mammograms and ultrasounds every year since the age of 35. I would find cysts, they were filled with fluid, they would aspirate them. I can not tell you how many times I heard “you have very dense breasts, dense breasts do not cause cancer, but they can hide cysts, so make sure you do self exams”. Three years before I was diagnosed, I had moved to California. When my mammogram was completed, I would tell them that I always had ultrasounds too. I was told they would contact me if they felt that they were needed. I was never contacted.

In July of 2005 I started to have severe cramping during my period. I mean almost take me to the hospital pain, which I never had before (except when my appendix burst). It would happen every other month for about 6 months. They thought that I was just passing a cyst. After the holidays that year I had gotten sick and I just could not shake the cold. In late January, I got shingles. When I was doing my self breast exam in late February I felt a hard lump. It felt a bit smaller than a peach pit. I decided to wait one cycle – to see if it was a fluid cyst. Next month it was still there. It was harder than any I had had before. I also felt another smaller cyst. I think deep down I knew at that point that it was not going to be good news. I am not sure why I waited another few weeks but I finally went to the doctor April 21, 2006. I now had a third lump near my nipple. The doctor did not like the feel of the lumps – one had a slight “hook” to it. She immediately sent me for another mammogram.

The mammogram really did not show much. They said it “looked like a snow storm” and they could not see a thing. They did an ultrasound, I kept saying “you found all 3 lumps – right”. They found a mass so I was scheduled for a core biopsy on April 26th. During the core biopsy I kept talking about 3 lumps. The doctor said “what are you talking about – the ultrasound found only 2”. I kept insisting that there were 3. They took 19 cores of the 3 lumps. My breasts were so dense that the doctor had a hard time getting the needle through my breast tissue and into the cysts and the one under the nipple was no fun at all. The doctor and nurse kept giving each other looks “over me” the whole time. They were being so conscientious trying to make sure to get good samples of each mass. When I left the office they said if it is good news the tech will call you if it is bad news the doctor will call. On Friday April 28Th at 9:30 am the doctor called. I was at work and she asked if I could talk? I said “I assume that it is not good news if you are calling me?” ” You have breast cancer.” I did not cry – I took down all of the information that she was telling me. My next call was to the breast surgeon. She was going to see my that day. I went to pick up my films and was at her office by 11:00am. She examined me and spoke about a lumpectomy as the tumors we about 3 to 4 cms, she also mentioned a mastectomy was an option. She thought because of my age I would do chemo and possibly radiation. She scheduled me for an MRI at 1:30pm. It was not until I got into the MRI machine that I broke down. All of the information that I just received the past few hours was starting to sink in.  I just kept thinking of my kids and I would cry.

I went home to have a family meeting with my husband and 2 kids. It was one of the saddest things that I have ever had to do. I told them I would be sick for awhile but I would be OK. When I told my then 5 year old son I was going to lose my hair he began to cry.  On Monday I went back to the surgeon, she had not had the pathology report from the biopsy when she first met with me. She was confused. The mammogram and ultrasound had only 2 tumors, but the biopsy indicated 3. I was whisked down the hall for another ultrasound. I said “I kept telling everyone there were 3”. That third lump – the one near my nipple changed everything. Now we were talking about 6.8 cms, a lumpectomy was no longer an option. We were now talking mastectomy. She told me that I had just saved my own life by insisting they biopsy the third lump.  They scheduled the mastectomy for May 11Th, I could decide if I wanted a bilateral by then.  I was scheduled to see the plastic surgeon on May 8Th, but I could not get an appointment with the oncologist until the end of May. My wonderful surgeon made a call and I was moved up to May 8Th. I had a bone scan and CAT scans prior to my meeting in which the oncologist spent 3 hours with me. He felt that I was a good candidate for neo-adjuvant chemo. I was ER/PR positive and he felt that I would respond to the chemo and the tumors would shrink and enable the surgeon to get clean margins. The MRI did not show anything in my nodes but he wanted to be sure. On May 10Th I had a PET scan.  My nodes were clean. My surgery was cancelled and I would start chemo in a few days….