Wednesday, September 25, 2013

Vein, Folliculitis, Fingernails

Up-date- Vein, Folliculitis and Fingernails

Sept 16, 2013 to Sept 24, 2013

For a quick up-date read no further and know that I am still here, yes!  For a longer up-date, read on…

My  Vein
A few nights ago, my mind began replaying a recent conversation with my oncologist.  I realized at that moment that I had blocked from my mind something that really scared me.  Before that conversation, I had been almost consumed with what will happen if the tumor between my lungs continues to grow in such a way that it completely compresses the vein that it is nestled beside. For some reason, my oncologist didn’t mention this to me.  I found out about it after reading my radiology report while my husband drove us home.  It read, Once again demonstrated is the right superior mediastinal mass encasing innominate artery and abutting right subclavian vein with mild narrowing of right subclavian vein without change compared to the prior CT on 3/29/2013.  No narrowing of the right innominate artery.  When I addressed this issue to Dr. R. during my last appointment, she said that a stent could be placed in the vein to prevent complete closure.  I then asked how I would know or what would happen to me physically if the vein was narrowed further. She explained that since blood is going back to the heart through the vein I would notice swelling in my neck area.  So, now I know what to look for physically.  I like to be prepared.  And, I now have a possible solution to a situation that really would be a huge problem for me.

As I expected, those ugly, painful sores have appeared on my head.  Since my oncologist really didn’t explain to me what this was, I decided to do an internet search to see if other people experienced the same thing.  I found in fact they do.  Red, painful bumps on the scalp may be the result of folliculitis. Here is how a website described it. .   Folliculitis is an infection and inflammation of the hair follicles. The follicles can become red and irritated, and form pus-filled lesions that resemble pimples. And yes, cancer patients and other people with depressed immune systems (such as those with AIDS and organ transplants) are more at risk. Folliculitis is actually caused by bacteria, such as staphylococcus aureus. Fungal and viral infections, or even chemical-based irritation, can also cause it. Cancer patients often experience it on the scalp, but it can also appear elsewhere on the body, like the legs and buttocks. It’s not particularly dangerous, just irritating and uncomfortable.

This has to be what I have.  Wow, how fun!

This website gives additional information about the condition.

I am treating this by using hypoallergenic soap, cleansing the area with hydrogen peroxide, and then applying tea tree oil to the sores.  I am not sure if any of this has really helped.

Hip Pain
On September 15, I experienced unusual left hip pain.  The pain was more severe than I had ever felt.  It came from deep within my hip joint.  That afternoon, my family and I took a walk through our neighborhood.  I felt the pain, but I was hoping the walk would somehow make it feel better.  By evening, it really started to hurt.  Luckily, a heating pad made the pain less severe.  I wish I had had some Tylenol, but I had no such luck. 

The next morning, my hip was still sore.  Of course I worried what the cause might be.  Every little pain is not just a little pain anymore.  By September 17, I was completely pain free.  This pain had to be the result of the Neulasta shot… or the chemo induced menopause… or maybe it was the Herceptin... Why one hip and not the other?  Who knows?  I will wait and see if the roulette wheel of side effects targets the other hip, or perhaps both during the next round of treatment.

The evening of September 20, 2013 I met a friend for coffee.  We had a wonderful time sitting outside talking about all the different happenings occurring with our families.  When I arrived home, the caffeine affect from my coffee was just a bit too much.  I knew I would not be going to sleep anytime soon. 

I sat down to work on a quilt I am making and to watch a movie.  I am not sure when the sensation started, but as I put the quilt pieces together I noticed my ring-finger fingernail on my left hand was hurting.  It actually had the sensation that I had burned the center of the fingernail.  I tried to remember if anything had occurred that evening that could have injured that particular nail.  I could think of nothing. 

Morning came and the fingernail no longer hurt, but when I looked at it, I was brought to tears.  The middle of my fingernail was white.  This was the same white that I was told would occur when a fingernail is separating from the nail bed.   I guess that means no more dish-washing for me.  Crap, this is not how I wanted to get out of washing dishes.  A new dishwasher to replace the broken one would have been a much nicer end to this necessary task. 

Days later and my fingernail is still attached, at least everywhere but the middle.   Why one fingernail and not the others?   I am not looking forward to how this assault on my fingernail (s) from chemo is going to turn out.

Monday, September 16, 2013

How a CAT Scan Works

Chemo #7
Sept 9 2013
Wow, the day is beautiful!  It is perfect for a road trip.  Too bad this road trip is to Chapel Hill.  Of course I want to go, but at the same time I do not because I hate feeling sick.  I go, though, because I want to live as long as possible. 

Greg and I arrive right at 10:00 am which is the time of my first appointment.  I really am not worried about being late today because I spend quite a bit of time waiting for my appointments anyway even if I arrive early.  It was true about my having to wait.  I was called to have my port accessed and blood taken at 10:37.  Then I went to the next area to alert all involved that I was ready for my next appointment.  Today I was seeing the nurse practitioner, Ms. O., instead of my oncologist.   I had met her previously and liked her right away. 

The best description of how a CAT scan works
Today, there was still no radiology report from UNC-Chapel Hill.  The nurse practitioner said she would look into why this had not been done.  “You requested it, she said, it should be here.”  In the two previous appointments, I had requested that someone at UNC-CH look at my CAT scan to determine if the lung tumors had possibly shrunk. On an earlier scan, the largest was 7 mm with 5 tumors being seen.  On the newest scan the largest was 3 mm and there were only 2 tumors noted.  In an effort to try to explain to me how this might have occurred, Ms. O. gave me the best analogy I have heard on how a CAT scan can miss tumors and how a large tumor may appear smaller than it is.  She explained it this way.  “Think of the area to be scanned as a piece of bread with raisins scattered throughout.  The scan slices that piece of bread every 5 mm.  The spaces in between are where tumors 
cannot be seen.  For a larger tumor, the CAT scan may only slice the tumor at the end of it therefore it may show a 3 mm sized tumor instead of the 7 mm that it may actually be.”  That created a wonderful visual for me.  So for now, I will have to let go of my hope that the tumors have shrunk and be thankful that everything appears stable at this time.

Note:  My oncologist has said the CAT scan can show tumors as small as 2 mm. 


We also discussed my diarrhea problem.  Ms. O. let me know that I could take more than the recommended dosage of Imodium until it was under control.  She said, “If you become constipated then you know you have taken enough.  One thing you can do is keep a journal of what you eat and drink to see if what you are eating is causing the diarrhea.  Then you would know what to avoid.” 

Flu Shot

During my conversation with Ms. O., I inquired about getting a flu shot.  In the past, I have not had the flu shot because I believed the shot was developed for the new flu season based on what developers believed the strain would become in the following flu season.  The vaccine was an educated guess, so there is no guarantee.  With all that being true, Ms. O. still believes I should get the shot.  I really don’t want to get sick especially with my compromised white blood cell count.  I expressed concern about getting sick from the inoculation.  Ms. O. said that the shot is fine.  You should stay away from the nasal spray because that contains the live virus.  You could contract the flu from that.  So with that, I suppose a shot is in order.

Shingles Shot

I also inquired about the shingles vaccine.  Ms. O said not to get that vaccine because it was only given nasally and, like the flu vaccine, it contains the live virus.  There is no shot for that one.  With a compromised immune system, I won’t be getting that vaccine.

Since I am having a difficult time figuring out what the cause of my coughing is, I asked Ms. O. if it were possibile that my cough was caused by the nerves surrounding the tumor between my lungs. She said, “It could, but really there is no way to be sure.  You should consider continuing to use your daily inhaler as this may help keep your airways open”.  The inhaler tends to make my hoarseness worse, but the coughing episodes are completely unpleasant.  I will go back to using my daily inhaler.  Perhaps I will notice a difference this time.

I had one mild complaint for Ms. O..  My lympheodema in my right hand had worsened.  She said, ”Taxotere is to blame.  It causes inflammation and causes edema (swelling of tissues), so there is nothing I can do but to wear my compression glove.  It is just another aspect of the new me.  Yuck!

My weight is now 102.7 pounds.  I have gained over ten pounds since my treatment began.  My weight had gotten so low before I knew the trouble my body was really facing.  Irritable Bowel Syndrome was to blame.  It left me eating very plain food and lots of water.  For months, I had sought help from two gastroenterologists.  The last one sent me to Chapel Hill since he couldn’t figure out why I was not responding to the drugs that had been prescribed.  The doctor at UNC-CH explained that I was being over-medicated for acid reflux.  This was not my problem.  He prescribed the right drug and soon I was eating and drinking whatever I wanted. 

The steroids, too, have probably helped me gain weight.  I am glad I have gained weight, but, the negative aspect from steroid use is it tends to swell my belly area.  It makes me feel really uncomfortable.  Stomach pooches have always been my nemesis, but this feels much worse.

After the doctor, it was on to the infusion room.  The appointment was at 12:00, but of course there was the waiting time.  By the time the pills were taken, the Pepcid had been given through my port, and the saline solution was dripping into my body, I estimated all would be completed by 5:10 pm with still two hours to drive home.  That is a better time than many of my previous appointments have been, so a good day overall.    

No Energy and Never-Ending Side-Effects

Chemotherapy #6
August 19, 2013
During my chemo #6 appointment I let Dr. R. know that after every one of my Monday treatments, I was really crashing hard by Saturday, and I was wondering if there was something that could be done.  I inquired for the reason why I couldn’t take steroids on a regular basis.  Steroids, I knew, caused problems, but at the time I thought, I don’t really care what it does to me.  Honestly, I am stage IV.  All I wanted was some relief.  Shaking her head, she said, “You would not like what it would do to you.  It would mostly be weight gain, and you really wouldn’t like it.”  She did not prescribe the steroids for me to take on a consistent basis, but she did change my prescription.  She told me to take the steroids as I have been:  two in the morning and two in the evening the day before chemo and the day after chemo, take the five given the day of chemo, and then she wanted me to take one in the morning and one in the evening the second day after chemo and then half a pill in the morning and evening the third day after chemo.  I did so, and on Saturday I still had a very lazy day, but I didn’t sleep.  I really couldn’t as I felt anxious.  Perhaps it was the steroids causing this.  At least I didn’t lose a whole day or more sleeping.  I plan to do the same routine for treatment #7 to see if I notice a positive difference in how I feel.  I learned later that the steroids I take are not the same ones that people take to bulk-up their muscles.  There is always something new to learn.

One troubling aspect of treatment I have found is I do more crying right around the time I am crashing.  This time, I have not cried as I have done before so perhaps the new steroid regimen is helpful.   Perfect example of how my emotions are directly related to how I feel. 

Into the third week –
My ring-finger fingernails are not as tender, and the tips of my other fingers are not as tingly as they were the previous treatment.  This is something for me to be happy about, and I am.  The little things in life do make a difference in my happiness.  I think that has always been true.

Two weeks after the August 19th treatment, I did get the sores on my head that have appeared after every single treatment.  I cared for it with acne medication and daily washing.  The break-out didn’t seem as severe. 

My digestive system has been quite affected by the onslaught of chemo.  Diarrhea has plagued me, but it definitely seems worse this time.  Today, I finally found a bit of relief.  Some of my problem may be related to all the coffee I drink.  Plus, I had a craving for salsa and chips and that has not always been kind to me anyway.  Diarrhea isn’t the only problem encountered by chemo for the digestive system.   Imagine trying to eat salsa and chips with a tongue that looks like it licked a freezing cold pipe and was stuck and then yanked off leaving several layers of tongue behind.  That is what my tongue is like a week after chemo.  Oh yeah, it is unpleasant. 

My Surgeon Called
September 4, 2013.
Dr. W., my breast surgeon called today.  She has been my surgeon since the very beginning.  Her office had called me last week to remind me that I had not been to see her for my usual yearly appointment.  I told the woman who called that I was now stage IV, and I would not need to see Dr. W. any longer and would she please tell her.  Dr. W. called me at 8:28 am several days later and asked what had happened.  She said she didn’t get a note from Dr. A. as she would have liked.   If her office had not called me, she would not have known.  She said she was sorry and that if I needed anything to call her.  I thanked her and said goodbye.  It was good to hear her say she was sorry.  I truly know she did everything she could to prevent this.  Sorry was what I needed to hear.

My dentist
My dentist office called today, too, about my 6 months appointment.  They are starting to get annoying.  Several months ago, they called, and I told them I would have to call them when I could come in because my life was too busy right now.  Of course I was lying about my real circumstances.  I have been a long-time patient of theirs so I would have expected them to respect my request, but they didn’t.   I have to wonder if it is the state of the economy that is causing medical practices to seek out their patients in such a persistent way.  

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.

Friday, September 13, 2013

Grief and Side-effects

4th Chemotherapy Treatment
July 8, 2013
I have really been down lately.  Today is no exception.  I tried to keep my emotions in check as I spoke with my oncologist about possible radiation treatments to reduce the biggest tumors especially the one in the mediastinal space between my lungs.  My logic was that if you reduce the bigger ones or get rid of them completely, then my life would be extended even longer because the smaller ones are less damaging to the organs.  There also would be less cancer cells to spread as well.  Dr. R. said studies showed that life is not extended when this has been done.  While I can appreciate all the knowledge that is gained from studies, it does not mean that all cancers that are like mine act the same.  From what I have read, no one understands why some treatments work on one cancer, but do not work on what seems to be an identical cancer.   I want this disease to be gone so badly, and she was telling me there was nothing that could be done.  This was such a hard thing to hear and accept.  I know I was not taking into account that the smaller tumors can lose cells into the lymphatic system or into the blood just like the bigger tumors leaving the cancer to continue to wreak its havoc on me.   Numerous small tumors would then be just as bad as a few big ones.  But, I still see the logic to my argument.  Somehow it seems I will be thinking about this again at some point.  I still have a lot to learn.  

We also talked about when she would consider using radiation.  She said it would only be used if one of the tumors was causing pain or was interfering with my ability to function.  Any radiation to head or neck produces bad side effects so that is not done to that area unless absolutely necessary. 

Next we talked about the HER 2 neu vaccine that I had read about on-line.  The vaccine is supposed to help the immune system recognize the cancer cells.  My oncologist said the vaccine has only been in the early stages of clinical trials.  These trials are looking for what dosage is best to give, how long, and how often.  It has not gone to the bigger clinical trials to actually see any successful results of defeating this cancer.  So I may never see this vaccine come out on the market and be given to me.

Right now, I don’t feel sick at all except from the Taxotere, Herceptin, and the Perjeta.  There are moments in time where I feel so great that I don’t feel as if anything is wrong at all, and it gives me hope that the treatments are working.  The past couple of weeks though, before today, I did not feel so great.  Before and after the first chemo I could feel a pinching sensation in my neck right in the area where I found the dreaded enlarged lymph node.  Then just after the second treatment, I stopped feeling it.  Well, for some reason it is back.  This is probably what is making me so sad because it feels like the treatments might not be working.  I sure need a boost mentally.  Good scan results would do that for me.   Looking further down the line, I know I will run out of treatment options.  It pained me terribly when I read a quote on a blog from a girl I went to high school with, Angie.  She died May 8, 2013 from breast cancer.  One of her posts on her “Caring Bridge” blog said she just didn’t want to think about it (her cancer) after one of her scans.  It was bad at that point.  I was newly diagnosed when I read that, so it was particularly hard to read.  We all need a switch that turns off our brain from remembering our circumstances.  Ativan stops the tears, but you don’t forget.  It makes you not care about taking care of things that need to be done. Dishes not washed, who cares?  Dogs not fed, who cares?  Maybe that is an exaggeration, but I remember when I would take it, all I wanted to do was sit and watch TV.  Sure I got up and did a few things, but the urgency to get them done was gone.  I may not have a lot of time to just sit.  Time is so vital, so I quit taking the Ativan and cry when I need too. 

Good grief, I feel tears coming now.  I just don’t want to leave my kids.  At least my older children have a good idea of what I value, what kind of person I am, and what I believe about the world.  It makes me so sad that my youngest is only 10.  We have only barely touched on the subjects of religion, politics, and why people might believe in things or behave in ways that we don’t.  Those long, deep conversations only come with age and maturity.   It is important to me to talk to my children about what they hear people say in casual conversations, on the radio, television or read in books.  I so want to have those conversations with her on our long commute to and from town.

The Dreaded Side effects:
The side effects can bring my mood down, but I will take these over cancer growth any day.    
 Lympheodema:  My lympheodema in my hand has worsened.  It looks like it did 2 years ago.  Thankfully  it is not as bad as it was 3 1/2 years ago when two more lymph nodes were removed under my arm causing my arm and hand to swell.   Before now, the swelling had subsided considerably, and I could even see the veins on the back of my hand.  With chemo, I am faced again with needing to wear my compression glove more often and it is really a pain when so much cleaning deals with water. 
My Head:  My head has several skin infections that have started to appear into the 2nd week after my infusions.   I am having the hardest time getting rid of them.  These are on the crown of my head with a few on the sides and back.  By the time the following treatment is about to occur, they heal and then the cycle continues.
Fingernails:  I can see the little white lines on my fingernails that are the result of treatment.  I had forgotten about those lines from my 6 rounds of chemo in 2010. 
Mouth Ulcer:  I still have that nuisance ulcer that keeps trying to fester on the side of my mouth.  The salt and water rinsing that I have been doing with me letting the solution drip unto the ulcer as I spit the fluid out seems to have helped.  The first breakout was horrible.
Diarrhea:  My diarrhea has been every day.  I guess I need to take more Imodium.  But at least it is coming out.  With IBS (irritable bowel syndrome), sometimes the cramping is unbearable mostly because nothing wants to come out.  I am so thankful to have the right IBS medicine now.
Tired:  First weekend after my infusion is always the worst.

My Husband
I wish my husband would talk to me more or at least let me know he sympathizes with my situation.  At the very least I wish he would say he is sorry when he says something that completely leaves me in tears.  Then he has to ask, did I do something to upset you?  At that point I have so many emotions swirling around my mind that I can’t pin point the one comment that started my tears.  I am sure that leaves him confused as well, but I still wish he would make an effort to try to figure out the breaking point. Whatever is said leaves me feeling down, unhappy and alone.  I am not the easiest person to live with it is true especially when my life is so out of control.  More than not, I am sure I am super sensitive to anything that might remind me of how helpless I am.  If you don’t have your health, all the other aspects of your life become so difficult.      

Wednesday, September 11, 2013

The Port, The Wig, and Learning to Cope

Chemo #3
June 17, 2013
I saw Dr. R. today in the UNC Cancer Hospital.  I asked her about my voice which seemed worse than usual.  She said my increased hoarseness should not concern me.  It is not an indicator that my tumor is growing.  The voice nerve that is being compressed by the tumor is fragile so even if it did shrink, it may be permanently damaged therefore my normal voice may not return.  That stinks because it would be nice to belt out a song again while driving in my car even it I couldn’t win American Idol.  Oh yeah, I guess that would be the Voice cause I am too old for American Idol.  Dr. R. told me I could go back to the Ear Nose and Throat doctor to see if there was anything he could do.  I remember talking to the Ear Nose and Throat specialist about possible injections into the vocal cord that could help.  For now, I will just deal with it.  I am so grateful that the vocal cord at least became paralyzed in a position that actually produced sound.  It could have occurred differently, and I would have no sound.  That would have been so frustrating for me not to be able to talk.

Since I was worried about cancer cells finding their way to my brain, I asked the oncologist about adding Tykerb to my treatment because that drug has smaller molecules allowing it to pass the blood brain barrier.  She said this treatment would be too toxic in combination with the drugs I am currently on.  Those are Taxatere, Herceptin, and Perjeta.  Woman in trials tried this and could only withstand the side-effects for 12 weeks.  We will continue the course I am on until we see that it is not working anymore.  I could get rid of Taxotere if I have stable tumors (not growing) or reduction for over 6 months.  So hopefully Taxotere and baldness will soon be gone and herceptin and perjeta will be the drugs that keep me here for a long time. 

My Port-O-Catheter
My port was placed last Friday.  The port is an access to a vein going to my heart where my treatments will enter.  The last two treatments were done through a vein in my arm.  The drugs are quite harsh on little veins so if treatments are going to continue for some time, as mine are, a port is the best method for treatment.  My mother-in-law drove me to this appointment at the Meadowmont Village in Chapel Hill.  The next day was pretty painful.  Tylenol was there to rescue me.  Today it feels so much better.  I am hoping it doesn’t hurt on and off as my other side did when I had it in the right side.  That one was implanted for a year because after the main chemo treatment which was for three months, I continued Herceptin for the rest of the 12 month period.  I decided to put it on the left side this time in hopes I wouldn’t have the same problem with the on and off pain.  I do not remember the catheter line that extends from the port being visible under the skin as it loops over my clavicle bone with my last port.  This time I can really see it.  And my shirts won’t always cover it.  I am pretty bummed about that. 

The Wig
I was able to get a free wig today.  Well it is on loan.  It kind of lifted my spirits.  I hate being bald.  It is so hard to make an average aging face look a little less average or even a below average looking face look like anything other than ugly without some hair to distract from so much face.

The beginnings of learning to cope
I am not crying as much, mostly once a day.  I believe I did not cry once yesterday, so that means I have had two whole days with no crying since April 1st . 

CAT scans
4th chemo treatment will be in 3 weeks.  Close to the next treatment or the 5th treatment, I will have scans of the neck, chest and abdomen to see what the cancer is doing.   The last scan didn’t show anything in the neck.  I asked my oncologist when I saw her why.  She said if those lymph nodes are cancerous it probably wasn’t visible on the scan because they are so close to the skin.  I also asked if there were other tumors that were seen on the scans but not noted on the report.  I was interested to find out if there were more than the four tumors in my right lung and more than the one noted in my left lung.  It was a bit unnerving to hear that the small ones (smaller than .5 mm) will not always show up and the ones that showed up this time may not show up next time because of the nature of the CAT scan.  So we won’t know if those are gone or just didn’t show up.  So the doctors will keep an eye on the ones that are 7 or 8 mm and above.  If those tumors show shrinkage or are remaining stable then that will be the indication to continue the drugs that I am currently on.  There is so much uncertainty.    

Tuesday, September 10, 2013

A journey? Nah, A nightmare is more like it.

2nd Chemotherapy Treatment
May 29th 2013
Once again I am waiting in a small room overlooking the street below.  Soon my oncologist will let me know if I can have treatment based on my blood test results.  My white blood cell count has to be checked along with my liver function.  The liver is responsible for eliminating the drug Taxotere from my body, so if it is not functioning properly there would be no chemo for me today.  Before the oncologist arrives, a young man entered the room.  He wanted me to be part of a study concerning lifestyle and how it is related to breast cancer.  This study would not benefit me, but could possibly help those that come after me.  All that would be involved was a blood sample taken from me and my authorization for tests to be done on it.  The results would not be provided to me.  I actually would have liked to have seen those, but I can’t imagine the test would reveal anything I didn’t already know.  An interview of about 1 hour or more was required as well.  This could be done during my infusion time.  It seemed simple enough so I agreed.   The young man was able to use some of my blood that had been taken from me already.  That saved me from being pricked again.  He also had time to interview me today.  This was turning out to be really easy.  As soon as the bag of saline was dripping into my vein to ensure that I was hydrated before the treatment started, the interview began. 

The Lifestyle Study Interview
The questions focused on how healthily or unhealthily I live and have lived my life.  Several questions were quite hard to answer.  For example:  How many cigarettes would you say you have smoked per week in your life?  Well, since I smoked from age 21 to 28 and then would smoke only occasionally in my 30’s, I found this question difficult to answer.  During my 30’s I smoked maybe two evenings out of a whole year.  This would occur when a friend would come in from out of town who smoked, and I would socially smoke with them while we sat on my back porch talking.  I am 48 now, so I tried to figure the total number of cigarettes I had smoked at 1 pack (20 cigarettes) a day for 7 years.  (I didn’t always smoke a pack a day so this added to the difficulty in answering the question.)   Then take that number and divide it by the total number of days since I was 21 to the present. Estimated in this way, the number of cigarettes a day was about 5, but that does not account for the fact that my lungs had many years of being cigarette free which was certainly good for my health.  From what I understand about smoking, after a number of years, 7 I think, the lungs can look like that of a non-smoker.  So, as I said, that was a difficult question. 

The same was true for this question.  How many drinks containing alcohol a day would you say you have had during your lifetime?  Good grief, in my 20’s I drank considerably more than compared to my 40’s in which I hardly have any alcohol at all.  I could not estimate how many packs like I could with cigarettes.   I didn’t keep track of the days I drank wine, or mixed drinks, or beer.  It was very random.  So, how can I answer that question?  Definitely, this answer was a wild guess indeed. 

Another question involved how many hours a day do you sit?  Since each day for me has a different amount of sitting, I took a wild guess at that one too.  Throughout the questioning, there were several questions that were similar to these questions but were asked in a different way.  I tried to answer the questions as I had answered them before, but really I felt like my mind could not keep it all straight.  So, I am not sure if I helped provide good information for the study.  Even so, the interview made the time pass pleasantly. 

The 5th day after the Infusion
June 3rd.
My second chemo infusion occurred on a Wednesday instead of Monday because of the Memorial Day holiday.  The last treatment I had left me feeling as if I had lost four days of my life.  Lost due to how much sleeping I did over the first weekend after the infusion.  My body also couldn’t fight off a urinary tract infection and conjunctivitis.  And, I had a nasty fall that left me bruised along my right side.  How I felt over those few weeks made me worry about how my body was going to handle the treatments ahead.   The nurse navigator, Ms. B., told me before my first infusion that the side of effects of each treatment can be different.  Three years ago, my side effects didn’t seem to change with each of the 6 treatments I received.  I sure hope what Ms. B. said will prove to be true.  

Today is the 5th day since my cancer killing day.  This time I feel better.  Ms. B. was right!  Yes I am tired, but I am not sleeping entire days away.  I am so glad.  Now I think I can do this for a little while.  These drugs just have to be working!  It is so scary to think that on average, people like me with metastasis to the lungs only live 2 to 4 years.  I wish I could trade this body for new one.    

Side Effects
Diarrhea is one of the worst side effects.  It can make it hard to go out in public.  I know where all the good restrooms are in town, so that helps.  The magic of Imodium has made it possible for me to take my daughters to their college summer school classes without incidence.  I remember watching a morning show on television shortly after Al Roker from The Today Show told his story about losing control of his bowels when he was in the White House back in 2006.  One of the women on a show I had on for background noise was commenting on his story.  She could not understand how something like this could happen to someone as it had not happened to her.  Obviously, she has never had Irritable Bowel Syndrome, gastric bypass surgery, or chemo or any other condition that can cause events like this.  Surely there were other people like me, sitting on their couches, or cleaning their home like I was, who were thinking to themselves, how can this woman not be more sympathetic to the audience she is rambling to?  The morning talk shows seem to be full of nonsense anyway so why did I have the television on in the first place.  With no dish or cable for me, I am stuck with basic television watching and this makes for limited show options.

My muscles in my shoulders and my hip joints did hurt after the Neulasta shot.  That shot helps to increase my white blood cell count as chemo can reduce it.  If the immune system really plays a role in identifying cancer cells with the help of drugs like Perjeta then Neulasta is an essential addition to my treatment, but I think that is still up for debate.  The drug is supposed to help me fight off infections that I might encounter in daily living, although it must have been a bit slow to help after my first chemo.  I am still grateful for the shot.  Thankfully the side effects only last a few days.   I could really feel the soreness when I lay down at night, especially in my shoulder muscles.  The over-the-counter allergy drug, Claritin, is supposed to help with the pain, but I did not remember to buy any when I was in a store that sold it.  Last time my hips would feel like they would lock-up and then release.  That was pretty painful.  That actually is most likely a result of the chemo drugs and not the Neulasta.   So far that has not happened again. 

I have been rinsing my mouth with salt water at least twice daily in an effort to keep ulcers away.  The ulcer that appeared in the corner of my mouth during the last treatment is still causing me some pain.  I am hoping the salt water rinsing will keep it from getting as big and painful as it did before.  

June 4
Today is Tuesday June 4th.  My intestines are unhappy, but if that is the worst of the side effects then I suppose all is well.   Each morning it takes a while for my intestines to settle and then I might have little bouts of trouble during the day.  I ate popcorn just after the first treatment and boy did I pay.  Such a shame, I love popcorn.  This time, no popcorn and I have had a little diarrhea that has been perfectly manageable.   With Irritable Bowel Syndrome (which is what doctors say you have when they don’t know what else is wrong with you), I have had for years with on and off problems, so really today it is hard to tell if this is normal me or chemo me.

I want so badly to be the 1 to 3% that lives longer than 4 years.  I am so hopeful that the new drug I have been given, Perjeta, will keep the cancer from growing.  A grim reality hit me yesterday when I realized that my mother-in-law may be the person who takes care of me when I can no longer take care of myself.  I really don’t want her taking care of my personal needs.  I guess I can’t worry about that right now.   

If I can continue to have side-effects with each new treatment similar to the side-effects I have had with this treatment, then I know I can do this.  Yes, I am tired, but I am alive and can breathe.  I must say, not being able to breathe is my biggest fear.   Several months ago I was having asthma symptoms and could not breathe well when I went up the stairs in my home.  My youngest daughter and I had a stretching routine and every night to warm our muscles we would walk up and down the stairs. I would become quite breathless.  It was a horrible experience.  That is why I began seeing a pulmonologist.  I speculated that I was allergic to cats.  I was never tested, but my 14 year old cat had started living inside our house and that was the only change in my environment that I could think of.  Once I started on an inhaler, I could now handle the stairs with no closing of my airways.  Could have been another allergen, but I am going to blame the cat for now.  My oncologist said my lung tumors were too small for me to have any type of symptoms from those.  

Good Grief, Cancer Sucks!
My doctor in Chapel Hill, Doctor R. has said twice now, “This is incurable”.  Instead of thinking about what I might do next year, she told me I should only think of my life as what I will do next week.  That doesn’t seem like she thinks I will be around very long.  It doesn’t seem as if she even is excited about trying to keep me around for awhile.  My relationship with her is still quite new so I will give it more time and see what happens.  Even though my relationship with Dr. A. is no longer, he did bring the positive aspect of saying he believed I would be around for a long-time.  Even though there was no way he could prove that this was true, I as a patient needed that kind of positive attitude.  So, I really wish at times Dr. R. would throw a little positivity my way.  I am in such desperate need of some positive feedback about my cancer.  Maybe I could be the small percentage of people that sees an NED. (no evidence of disease) on my CAT scan.  That would just make me so incredibly happy.  Yes, I have read that even though some patients reach NED, the cancer will always come back.  I knew that stage IV breast cancer was bad, but I did not understand until now that there is absolutely no chance of a cure at least for everyone except for about 1%.  The medical community does not talk about a cure with this type of cancer.  Other types, yes, but not this one.     

I want to stay in this world, but the cost to keep me alive is so extreme.  I am not prepared to say I don’t want treatments cause I do want to live, but the financial aspect is daunting.  Greg told me this morning that so far each treatment in Chapel Hill is approximately $38,000.  Thankfully, we have good insurance where there is a cap of how much we will have to pay out of pocket.  I am tremendously grateful to all the people who buy insurance with this company because it is truly helping me.  We were already financially stressed from tying to recover from a failed business.  This just compounds the problem.  I worry that we will, or rather my husband when I am no longer living, will go bankrupt over this.   Why did this have to happen?  Three kids in college too.  I hate thinking about what my illness means to the family.  Yes, there is nothing I can do.  I must have the treatments so I can stay on this planet as long as I can.  

Having cancer really puts a new perspective on being financially strapped.  Before cancer I was suffering physically from our financial situation.  Sometimes I would have such anxiety about it that I felt I was having trouble breathing.  Now that I am facing this deadly disease, I really would rather be completely broke with no end in sight then to have this cancer in my body.  Cancer is worse than any failed business.  It is worse than worrying about how to pay for college.  It is a nightmare.  Whoever decided to call cancer a journey was really trying exceptionally hard to find the positive aspect of this disease?  “Journey” to me is a fun adventure.  This is not fun. 

June 7th
My youngest daughter’s last day of Gymnastics, at least for a little while, was on June 7th.  She looked so happy showing all of us what she can do.  And she made a friend during this time, so that made these classes even more special.  I have seen a vast improvement in what she can do.  Plus if she works at it, she will have her straddle completely flat on the ground.  I have enjoyed every moment I have watched my kids in their various activities.  I truly love being a mom.

The Brain MRI
June 8th
Friday, I had my MRI of the brain.  It scares me immensely to find out the results.  One of the worst aspects about Her2 neu breast cancer is that it likes to go to the brain.  I keep chanting in my head for the medicine to “kill the cancer”.  The drugs I am treated with do not cross the blood brain barrier because their molecules are so big.  That is a cause for worry, but if the medicine is able to do the job it is supposed to, it will stop those tiny cells from spreading to the brain by killing the cancer before it reaches that part of my body, at least that is the hope.  If it is in my brain or ever goes to my brain, I am pretty sure that means my time here is even shorter.  Ok, I know I need to stop harping on the bad things that can happen.  I do need to be aware of it though so I can somehow mentally prepare for it if it does.  At least that is my theory.  I like to be prepared.

The MRI machine was quite loud as it took the images of my brain.  I was given ear plugs to muffle the sound which it did although it was still very loud.  Many times the machine would make a knocking sound.  My daughter told me she read about how it works after she had a MRI of her ankle after she injured it while dancing.  She told her sister and me that the knocking that I heard was the magnets realigning to set-up for the next set of images.  I won’t find out the results for a few days.

June 10, 2013
The nurse navigator from Chapel Hill called today.  No cancer can be seen in my brain!  Yaaaay!!!