Sunday, September 15, 2013

Cancer stable/A Parent with Cancer

5th Chemotherapy Treatment
July 29, 2013
Today was my 5th chemo treatment.  My doctor gave me the news that the CAT scan showed the cancer was stable.  Yes, I am happy, but I was really hoping to hear that the tumors were smaller.  This new report read differently than the last CAT scan I had.  It showed a 2.8 cm mediastal tumor.  The last scan showed it at 1.9 cm.  Dr. R. says it doesn’t mean it has enlarged.  I was having trouble reconciling in my mind the size difference of this lymph node, or mass as it is now referred to, shown by the two scans.  Therefore I probed further.  Apparently, one radiologist cannot measure a tumor from the exact location as another radiologist she told me.  The nature of how CAT scans work dictates this.  She seemed to become a bit irritated with me and told me not to worry about it.  When growth is seen, it must be very evident before treatment is changed she stated.  Before the next time I see her, she is supposed to communicate with a radiologist in Chapel Hill about whether there was any reduction in the lung tumors.  There were 2 seen on this report and 5 on the last report.  I was curious to know if those 2 were in the same location as any of the other previous tumors seen.  She said she will let me know what the radiologist’s conclusions are about them the next time I see her.  There are so many layers to interpret when looking at a CAT scan, but for that one mass to be a whole centimeter in size larger was quite startling, at least, to me.  Certainly, this is another area where I have more to learn.

Either way, the doctor said the report read that the cancer growth was stable, and we could continue with the same treatment.  At least at the end of the conversation she was trying to keep my spirits up about how this was a “good day”.  That was the positive pep talk that I so needed from her a few treatments ago.  Finally!  Even so, when someone, me, is hoping so badly for shrinkage and a miracle, stable isn’t quite what I wanted to hear.  I do agree any day without growth is a good day which is what Dr. R. said to me.  And there doesn’t appear to be any metastases in other locations like the first report had indicated there might be in other lymph nodes.  So that is good, too.  At the end, the doctor again insisted that this was a good day, and I have to look at it that way because no one can predict how things will be in 12 weeks when the next scan will be.  One day at a time.  Isn’t that true for everyone?

Since breast cancer becomes immune to the drugs that are given, I asked Dr. R. if it would help to keep switching drugs so the cancer could never reach that point.  She said it was too risky because if the next drug you try doesn’t work then the cancer grows.  Growth of course is bad, so oncologists like to stay with the drug that is working.

Dr. R. said I could use my inhaler again to see if it would help my possible allergy symptoms.  I think I will do that with some over the counter Claratin and some Sudafed thrown in when needed.  She can give me a prescription for an inhaler.  I told her I still have some left over from my previous prescription from my pulmonologist.  Good to know she can give me a prescription so I don’t have to go see Dr. C. again.  

Parents with Cancer Study
Today, another person who was conducting a study approached me.   The young woman was a medical psychiatrist and was working with my doctor to create programs for people coping with children and coping with a serious cancer diagnosis.  She was extremely nice as I rambled while answering her questions. 

Here are some of the questions that were asked while my infusion took place.

1.   Do you think your parenting has been affected by you having cancer?  I said “no”.  But I explained my cancer has left me completely vulnerable to my emotions and my kids are seeing this.  I cry a lot.  How that is affecting my children is something I wish I could change.  It has affected my 10 year old as it has on occasion brought her to tears when she has witnessed me crying.  My oldest daughter has verbalized how she wished I would stop crying all the time.  Being tough-skinned is not a prerequisite for being a good parent I believe.  My son can pull out the meanness factor when he is trying to get his way, and I have been left in tears, but the tears don’t mean he wins.

2.   Do you or have you asked for parenting advice from anyone?  Not recently.  I have two 18 year old girls, a 17 year old boy and a 10 year old girl, so I have been doing this a long time.  When they were very young, I read quite a bit on discipline and incorporated some of it into my way of parenting.  I believe, then as I do now, in having a clear understanding of what is right and wrong.  Communication with my children about anything is hugely important to me too, and I think my children have and do benefit from it.

3.   How has each stage of your cancer affected your parenting?  After the surgery was over, stage 0 was not difficult.  I felt like I was going to live a long time.  With that, my parenting style didn’t change.  After stage 1, I did live everyday in fear it would come back, but I felt there was a huge chance, I believe the statistics say a 98% chance that I would be cured.  Life and handling parenting issues went on as normal.  Stage IV …well it is stage IV.  Dying is what is happening to me, and I am terribly troubled about my missing out on so many important events that will occur in my family.   I suppose if I had to pin point one thing about my parenting that has changed it would be that I spend more time telling each of them how I feel about them and how they have made me so proud to be their mom.  I don’t want to die and my children not know how much they meant to me and how they made my life wonderful.

4.   How has the cancer affected the relationship with your partner?  For me, there were problems in our marriage before this stage IV diagnosis, and they don’t simply go away.  I believe I don’t spend as much time thinking about those problems and making myself as angry about them as I did before.  There is lots of sadness, disappointment, and yes, anger that we both are dealing with now.  I feel such guilt for causing my family this emotional and financial pain.  I feel like he has no choice, but to go through this with me.  What a huge burden for him.  Sometimes, when he is really happy, I wonder if it is somehow connected to my demise or is he just trying to cope.  I will choose to believe it is his way of making the best of a horrific situation.            

5.   Do you think your children would benefit from talking to someone?  No, not anyone who deals with problems professionally.  Not right now.  I feel like we have each other right now if needed.  The teenagers are busy with school and their lives, so I don’t think they think about my cancer daily.  One of my older daughters mentioned that her friends seem to have lots of problems and she doesn’t have any.  She was talking about boyfriend problems, but this may show how my health is not a huge factor in her happiness right now.  I am so glad about that.  My youngest seems very content with the hugs and the love she is getting from the people around her.  Plus, since my children have been influenced by me, and I have not sought professional help for my problems then I would imagine that they would not seek it as well.  Presently, none of my children are displaying any behaviors that worry me.

6.   How did you tell your children?  Since this had happened before, the older children knew this was not a good outcome.  My youngest only knows that I again have cancer, and I need treatment.  She still believes that I am going to be fine.  When they start asking questions, I know they are ready to hear more.  I think they all may believe, at least partly, that this can’t be as bad as it seems.

7.   What programs do you think would benefit you?  My husband and I already have our Wills created by an attorney, but I think some people might want to seek advice on this matter. People need to understand how not having a Will could affect who becomes the guardian of their children. Parents should also be aware that if a judge does not agree that the guardian stated in the Will is the best choice, he/she can choose someone else. Still, good to have it in writing so a person's wishes are known. 

8.   If you had no children, would facing this diagnosis be different?  Absolutely!

9.   How does being a parent affect your choices for treatment?  Since I am in the early stages and can use only those drugs in the first-line of treatment, I have not been faced with too many treatment choices.  With Her 2 neu, the choices are somewhat limited anyway, but far better than they used to be.   Of course any drug that will prolong my life is presently one I would take.  If I was told I had only 6 months to live and this drug will only extend my life a short time, I might decline the drug if I could not enjoy my family.  Questions about denying treatment or seeking advice about treatment have not been an issue yet.  Thus far, I have taken the advice of the team of doctors at UNC-CH and have done what they have suggested.   My experience is currently limited. 

10. Has your doctor talked to you about understanding how you might feel about living with cancer and having children?  No, she has only offered counseling services through the hospital.  I don’t even know if she has children.  I did not know how many children, if any, that my other oncologist had either. 

11. What is one thing that you would tell another parent that was going through the same thing?  I would tell them to take pictures so the child will know that mom was there when these things happened.   A friend of mine had told me to take lots of pictures.  At first I didn’t see what a good idea that was until I thought of it in the way it can help kids with the time-line of events. Now I have a box of pictures that I have started for each child. I would make a video, too, explaining how much you love them.

12. Some questions were asked about what the doctor has told me or talked to me about my cancer.  I answered that I think she can’t tell me certain things about my condition because she doesn’t know how this situation will progress.  She has said in some people with metastasis to the lungs, the tumors stay the same and the cancer moves somewhere else.  I asked what I would feel as it progressed in the lungs.  She did not explain and just said It would have to be much worse for me to feel anything.  Great news for now.   

The Godly Woman
July 29th
As I waited for my appointment with Dr. R., I could sense two people who were in chairs adjacent to me me.  Soon the woman said, "Miss?" to get my attention.  I looked at them.  They had pleasant faces so I smiled.  It was a man and a woman.  The woman said, "It is nice to see you smile."  After a few more sentences I knew she was going to start preaching about God.  I don't know what it was, maybe the tone of her voice, but I knew.  Yup, I was right. She said, "God is good.  We must believe that he is with us and will take care of us.  He can and will help."  I didn't think I looked that pathetic on this day sipping my coffee from Starbucks but with a head covered with a bandanna and a hat, I guess that says it all.  I could not help but respond with, "Lots of people have believed God is good and prayed for help, but they died anyway."  That is as far as I went with my thoughts on the matter.  She continued.  I listened, nodded and smiled.  

They soon introduced themselves, and I learned the history of their relationship, how they met and married.  The woman did most of the talking.  Her husband was going through lung cancer treatments.  From what they told me it sounded like he was doing well with one small tumor in the lung that had shrunk and the radiation had taken care of the lymph nodes in his neck.  He also had gone through prostate cancer 6 years ago.  They filled me in on that story too.  That cancer had not returned.  He was starting a new treatment through a clinical trial today.  The last treatment he was in was the result of a trial too.  I didn’t ask why he had to change treatments.  It didn’t seem from their description that the cancer was growing.   Soon, I was called for my appointment with my doctor.  We said our goodbyes and good lucks.  And, I followed the nurse through the door.   

Fingernails:  I have some peripheral neuropathy in my middle, pointer fingers and my thumbs.  It is a numb or tingly sensation that I feel right at the tips of those fingers.  It started about four days after my treatment, and I have felt it intermittently throughout the weeks leading up to my next treatment.  The finger nails of my ring fingers of both hands have started to turn brownish and the right one in particular has the sensation that if I knocked it hard enough, it would fall off.  Ouch!  
The Neulasta shot: (helps my white blood cell count increase) It makes the muscles of my shoulders, jaw, back, and hips and top of my thighs hurt.

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