Mullen News

May 2, 2006 10:00 am, one year ago this month, I was given the news that I had breast cancer. Happy “I am alive” Anniversary to me!!

I met with one of my surgeons, Dr. Shih, who put in my portocath.  I am having it removed on June 4.  He asked me if I wanted to be put to sleep or have local freezing…its funny because everyone I tell this to say, oh definitely put to sleep.  But if you tend to get really sick from the drugs you might choose the local which is what I did.  He said they basically freeze the area, he cuts open the same incision, cuts away the scar tissue, pops out the port and sews me up. In and out in an hour verses 4 hours with anethestic.  I hope he gets to let me watch.  Maybe I should bring a mirror.

A totally new subject….

As some of you know we are now raising mink. They stink like nobodys business. Anyway, they are currently whelping aka. giving birth…all 1600 of them.  Since the majority are first time moms if requires checking the litters several times a day for things like tangled umbilical cords, cold babies (we warm them in an incubator and put them back with the moms), sufficient milk production, too large litters (we farm some out), record birthing details on the cards, remove dead babies,etc.   So tonight after the kids were in bed asleep I head down to the barn to do a final check (Randy is working in the yard).  I didn’t realize how late it was but around 10 o’clock at night as I am standing by a cage with 3 babies in my hand the lights go out. It is PITCH BLACK! I forgot the lights are on an automatic timer. There is no moon to guide me or glow from lights, just total darkness. I dump, um whoops, I mean I very gently place the babies in the cage in front of me (and hope the mother doesn’t bite me or escape because I am doing this all by touch since I can’t see) and feel my way along the row of cages to the front of the building, stumble across to the door and let myself out. Then I breath. It is a little disconcerting to be in full light then total darkness without warning.  Next time I am bringing a flashlight along.   

Count your blessings

 I had a followup appointment with my Radiation Oncologist, Dr. Nolan, on April 12 to make sure all my burns were healed and everything was getting back to normal.  I filled her in on my “situation” with Dr. Younis and she told me she would do all my followups from now on and I didn’t have to go see him again…yippee. She said it only made sense since I was seeing her for the study I am participating in.  She also okay’d for me to have my portcath taken out…another yippee.

She also told me that based on the information I gave the nurse my “quality of life” was being greatly affected by the tamoxifen and since the side effects would last the whole time I am on tamoxifen (5 years), she strongly recommends I try another drug to help with the side effects.  I really hate taking medication of any kind but I finally caved today and got the prescription filled. The hot flashes during the day are not comfortable but are manageable, it is the ones during the night that are getting hard to deal with.  They are more intense and leave me shaking and chilled afterward.  Have 5-7 of those a night and you can forget about a “good nights rest”.  After 7 weeks without a full nights sleep I am getting a little cranky.

So instead of whining about having to take another mediation I am going to be thankful that there is a drug designed to help prevent a cancer recurrence and another drug to help with the side effects. Plus I’ve lost 10 pounds…bonus! Count your blessings.

The Tamoxifen Drama

I feel like this decision about whether to take this drug or not has dragged on forever and become such a drama…which I hate. It should be a simple decision but I guess there are so many things that bother me about it, yet I don’t want to not take it and risk the consequences….a return of the breast cancer.  However I met with an Oncologist yesterday and think I may have found some resolution.  It is not the Medical Oncologist my family doctor referred me to but it did work out okay.

I guess I am going to have to tell you what happened last week.  I had told you that my family doctor had referred me to this new Oncologist that I was really pleased about.  Last week I called the Cancer Clinic to cancel my appointment with Dr. Younis that had been booked since last fall.  I was going to be seeing this new Dr. plus there was no need to see him since I hadn’t started taking the drug yet. Well….I was given a hard time about cancelling the appointment and finally after several phone calls back and forth with the scheduling clerk and Dr. Y’s nurse, she told me I had to see him and that he had cancelled my referral!! What!!!  She told me that he said there was no need for me to see someone else, the diagnosis was not going to change.  I informed her that I did not need a second opinion on what I had but wanted to discuss treatment options which I was not able to do with Dr. Y and this was exactly the reason why.  It wasn’t my intention to get into the details of my problems with Dr. Y  with her but it eventually had to come to that.  She finally understood my situation and agreed to forward my concerns along.

So I was finally called with an appointment to see a Dr. Eva Grunthall.  Randy and I met with her yesterday.  She is not a Medical Oncologist in that she treats patients, she is an Oncologist that  follows and keeps up to date on all the current studies, drugs, treatments, etc. which she then presents to the other Drs.   Her nurse told me she is the current expert on all the studies related to Tamoxifen and that she was great to talk to.  She was right. 

She said medicine was all about science and facts so it was hard for her to comment on the naturopath options since there was no conclusive evidence like there was with the drug but that removing my ovaries was not “natural” because they perform so many other functions.  By removing them I open myself up to other medical problems.

My main concern was the side effect of uterin cancer.   I took the birth control pill for 7 years and was told the side effect of breast cancer was very rare yet here I am in my thirties with breast cancer and no other markers for having it. I felt maybe I was trading one cancer for another if I took the drug. She told me that yes, I could very well be one of those people who could developed uterin cancer BUT she said it would be much better to have a new cancer like that then the return of breast cancer.  I remember thinking at the time…is she nuts.  But her point was that uterin cancer is highly curable and they would be regularly checking me for that while if the breast cancer came back it would be fatal.  The trade off is a curable cancer for a non curable one!

She said that, like me, she hates taking drugs, but in my situation, with the type of cancer I had, she would not hesitate to take the Tamoxifen.  She is also going to recommend that I have yearly uterin ultrasounds.

She really did help make the decision clearer.  She didn’t pretend that everything would be okay if I took it or dismiss my concerns but showed me that perhaps it was the lesser of two evils. So while I am not 100% confident in the drug I am going to take it. I am praying that I made the right decision and last night I finally felt a peace about it, so maybe I did.

On the way into the appopintment Randy and I were listening to a sermon on cd.  The pastor was talking about the passage in Hebrews about Jesus asleep on the boat when the storm came.  He said that when the panicked men woke Jesus up the first thing He said was where is your faith?  Jesus was perfectly able to calm the storm but sometimes the storm needs to rage so he is able to the calm the person instead, that we look to Him with faith to get through the storm. We need to realize that instead of crying out why are you letting me go through this that we should be thanking Him for the strength to get to the other side.  We also need to pail out the water and paddle, not sit there in dispair.

As I was listening, I realized that when the big storms came, the diagnosis, the surgery, chemo and radiation, I had no problem turning to Him.  He was my strength, my peace and calm.  But I need to learn that when the little showers or gales come that I have to trust Him then too. That whether I am at a weak point or strong, I have to lean on Him and ask for his strength and guidance.  I guess there has always been a little part of me that is stubborn, wants to deal with things on my own and feels weak if I don’t.  That sounds so arrogant.  And it is. He’s teaching me so much and humbling myself before Him and realizing He is “in control” of the big and little storms of life is just one of many lessons.

Our Mountains

Last Sunday night I got up and spoke during the testimony time at church.  I didn’t plan on doing that and definitely didn’t have anything prepared to say but our pastor commented how we had so much to be thankful for. I am so blessed how could I just sit there? Before I knew what I was doing I had jumped up out of my seat.  As soon as I stood I realized what I had done!  I am not a spontanious person, I like to plan everything out and be prepared. Hence the black out remembering my favorite quote….”don’t tell God how big your mountain is, tell that mountain how big your God is”!  (thank you Esther for helping out, I knew you would know it).  I hope through my fumbling people got the basic idea that I was trying to get across…there is nothing in our life that is too big for God.  For that matter, there is nothing to small for Him either.  He cares about every thing in our lives. 

God doesn’t have a “crisis meter” in heaven, judging whose problems are more serious or important. There have been times when people have stopped themselves from complaining in front of me.  They figure nothing they have to worry about can compare to me having to deal with cancer.  My mountain just happened to be cancer but  whatever you are dealing with is your own personal mountain.  It can become overwhelming and cripple and destroy you if you let it.  God wants us to come to Him, lean on Him, put our faith and hope in Him.  He will never let us down.

When I was diagnosised with cancer it was too big for me to deal with…but not God. He strenghtened me, comforted me and carried me when I couldn’t do it on my own.  I guess it took this journey for me to realize this is what He wants…for Him to be everything to us.

New Doc!

This is so amazing!  I got a call from my family doctor about my new oncologist with some great news but before I tell you I have to fill you in on the background so you’ll understand how great this is for us.

When we first started this cancer thing I had so many people, patients and family members of patients and hospital personel, tell me about this wonderful doctor at the cancer clinic. Randy even came home from work and told me this story about the wife of one of his sales reps.  She had breast cancer and at 4years, 10 months it can back in her brain.  Her oncologist cried with her and her husband when he had to tell them this news.  The husband/sales rep told Randy if we had the chance, to get this doctor because he was fantastic.  It happened to be the same doctor I had been told about by so many people.  Initially we had looked in to switching doctors but then chemo started and we didn’t want to “rock the boat” or cause any problems so we stuck with who we were assigned to.

So…are you ready for this….guess who my doctor got me referred to….yup, that’s right….Dr. Racin (I’m not sure of the spelling but it sounds like raisen).  We don’t have our appointment yet since the referral was just made but we should hear something within the next 10 days. 

Sometimes things happen for a reason, sometimes our prayers are not answered the way we want them to be and we don’t understand why, but I believe the Lord has a reason for everything. Maybe if we had this doctor from the beginning I wouldn’t have turned to the Lord as much, who knows.  I’m just really glad that we are seeing him now when I have so many questions about this next phase of treatment.

To Cheryl, Mallorie, Lisa, Charmin, Sarah, Erin, S…

To Cheryl, Mallorie, Lisa, Charmin, Sarah, Erin, Shannon, Annette, Esther and Kim,

When I scrapbook I always put a little piece of myself into it. My creativity, emotion and most times, love. Many times I agonize over a page to get it just right. Some pages cost me a ton of money in supplies.
Others are so simple yet are right from the heart.

So when you girls gave me the album last night I was overwhelmed because I know the investment you put into it…the time and love.
How do you say thank you for that?

Every page is different and personal and is a reflection of that person and I LOVE that. After I got home last night, I had to reread the journaling and look at each page over and over because my eyes were swimming in tears. It is simply beautiful and means more than I can put into words. I feel so blessed to know women like you and am honored to be called your friend.

Cancer can take so much from you. I’ve never felt that because I keep being blessed and blessed. I have been give so much and to me, this album is a symbol of the cancer…of what it CAN’T take from you!

So thank you….for your gift of love.

6 Down, None to Go!!!!

Chemo number 6 is completed and that’s it….I’m all done!!! I know everyone is cheering and I really would like to, but you need to give me a couple days to feel a little more up to the whole Yippee thing. Then I will be dancing all over the place knowing that there is no number 7!!

Everything went well today. The boys were really good but it was a long day for them. They revived somewhat when we made a side trip to Toys R Us on the way home. It’s amazing how that works.

I have absolutley no vanity or pride any more so I am going to tell you this story because with my sense of humor (and the drugs in my system) I think it’s hilarious. Those of you who know me well know that I can burp with the best of them at any time but I’m not much of a “tooter” (that’s the only other word we use in our house besides fluff). Chemo tends to make you very, very gassy. You have no idea, I’m talking gas…I am typing this laughing my head off. Well, there are times that “it” seems to go on forever and the boys look at me with this amazed, shocked, horrified, unbelievable look on they’re faces. I innocently look at them and simply say excuse me but don’t blame me it’s the chemo! Geoffrey has gotten to the point where he looks at me so compassionately and sweetly and says, it’s okay Mom it’s the chemo right? Andrew, my cynical and questioning one, on the other hand is starting to think I’m just using that as an excuse. So today, while we are waiting for “Mr. Serious and Down to Business Dr. Younis” to come in, Andew tells me he is going to ask him if it really is the chemo or am I lying! Randy and I quickly and quietly tell him that it would not be a good idea (especially if he enjoys life the way it is now!!). Part of me was laughing inside at what that kid comes up with and the other part was a total wreck waiting for him to blurt that out to the Dr. despite our dire warnings.

Common sense prevailed on the part of my son and the planned trip to Toys R Us was fulfilled!!!

As you can probably tell the drugs are running thick and freely through my system so it is time to shut up. I am tired and nauseated so it is off to bed. Love to all.

Self Breast Exam

I just finished reading an article about a 17 year old who had a breast removed due to breast cancer. 17!!!! While this is not the “norm” it just shows that this disease is affecting younger and younger women.

Alot of breast cancers now are estrogen driven or what they call estrogen receptive. Meaning estrogen that our body normally produces feeds these particular types of cancer. I was told that I probably had the cancer cells in my body for a long time but when I had Sara three years ago, the surge of hormones activated and feed the cells causing them to grow into the resulting tumor. So I personally feel that women during the child bearing years should be more aware of this and be checking for anything unusual.

Anne, your family doctor should be able to show you how to do a proper breast exam. He or she should also have a booklet or guide showing you how to do your own. My doc has cards that hang on your door knob (great for the bathroom) with diagrams showing you what to do step by step. Most pharmacys now have a section with free booklets on different diseases and guides for doing self breast exams. Don’t forget to check your underarm, which is where my lump was, or your side down by your ribs. If you can’t find anything, let me know and I would be more than happy to send you something.

Cheryl, now that you have done an exam, when is your mammogram appointment? I couldn’t book one myself but once your turn 40 you don’t need a doctor’s referral. Just call the Valley Regional breast screening clinic and make your own appointment. It usually takes months so you have plenty of time to psych yourself up for it. I’ll even go with you if you want some moral support.

Penny, I’m assuming your mammogram results were okay? Sometimes we have to push these things along. Good for you!

Hip Hip Horay for all of you doing your breast exams!!!

Have you checked this month?

As most of you know October is Breast Cancer Awareness Month. With all the publicity it brings it to the forfront moreso than any other time. So how many of you have done your breast exam this month? Or any other month for that matter? I was one of those people who never did breast exams. I had no family history, never smoke or drank, had normal periods, breast feed all three kids, was healthy, only in my thirties and besides, my boobs were kind of lumpy anyway…how would I be able to tell what was normal or not!?

When I found my lump (thats right, I found it) sort of by accident, I put off going to the doctor for a few months. When I finally went, my doctor didn’t think it was anything to worry about and told me to wait a couple months to see if it went away. When I returned a few months later she still thought it was okay. At this point I was starting to become concerned and I had to “push” to get some testing done. All those months wasted because I didn’t fit the description of who should have breast cancer.

1 in 229 women in their thirties will develop breast cancer. Wow! This is not just an “older” woman’s disease. Over 80% of women with breast cancer have no family history! We are told that you only need to be concerned if there is breast cancer on your mother’s side of the family. My surgeon told me that further studies and gene testing are beginning to show that “any cancer on either side of the family” is a indicator of an increase risk of breast cancer. My father’s sister died of breast cancer and while that doesn’t make me high risk, if I had of know of that connection I might have been more vigilant in checking and following up on anything unusual.

So if you would like to do something for me…please take the time to do a self breast exam. And if you don’t want to do it for me, do it for yourself and your family. If you are not sure of what you are feeling, go have your doctor check it out. And if you are still not happy, INSIST on further testing. A mammogram really isn’t that bad. Get your yearly pap smear and breast exam from your doctor. I would rather feel foolish for running to the doctor than feel sick from chemo!

Radiation Appointment

I met with my Radiation Oncologist, Dr. Maureen Nolan, yesterday. She is a sweetie with a great sense of humor. I was able to persuede her to start my radiation on November 20 so I can still go on my scrapbook weekend (10-12) and our little trip to Pennsylvania (13-19).

The Study Results……..

When you have less then 3 lymph nodes with cancer they only radiate that breast and the treatments lasts for 4 weeks. This is the course that I normally would have had. However they currently have a research study going on in Canada, the US, Australia and New Zealand, which is trying to prove that radiation to the lymph area or underarm (as well as the breast) would also be beneficial and reduce the chance of the cancer returning to that breast, bones or other organs.

Due to many factors, I am an ideal candidate for participation in this study (there are only 25-30 woman allowed from our area). The hesitation on my part was because the study meant having radiation for 6 weeks verses the normal 4, plus the fact that the study is broken into two treatment groups, the standard (breast only) and the regional radiation (breast and lymph area). I had a 50/50 chance of getting in the “good” group.

After much thought, discussion and prayer I decided to go in the study. If this is my chance to beat this thing I wanted every possible treatment option available.

Well….I found out yesterday that I got the standard group. I have to say I am somewhat disappointed. You are chosen randomly by computer so there is not even a “person” I could bribe to get me in (just kidding).

“Trust in the Lord with all your heart and lean not on your own understanding….” Proverbs 3:5. My favorite verse. While it doesn’t seem fair, I have to believe that there is a reason…maybe someone needs that additinal treatment more than me. So I have to let it go.

I thought about pulling out of the study because really who wants to go for 6 weeks when I can get the exact same treatment in 4!! But I have decided to stay in for 2 reasons: somebody has to be in that group. The study would be worthless if everyone backed out of the control group. So hopefully at some point in time every women will be able to have the additional treatment. The 2nd reason is because regardless of which group you are in they do a pretty intensive 5 year followup…xrays, exams, bloodwork, etc. If you read my previous blog you would know that if I wasn’t in this study, once my treatments are done, except for a yearly mammogram, thats it.

So I had a 45 minute CAT scan which helped them “line me up” and tatto me for the radiation treatments. The 7 tattos are about the size of a small mole and as the Radiation Tech said yesterday, they are the kind you get in prison, dab on the ink and stick you with a needle. Kinda cool! Its a good thing I don’t have a needle phobia because this whole entire process would have been a nightmare.

I can expect fatique and energy loss, irritated and red skin (like a sunburn), soreness in the chest area and possible cough and shortness of breath. Sounds like a walk in the part after chemo! I will have 29 treatments, 5 days a week for appoximately 6 weeks. This will all take place in Halifax since there are only 2 machines in Nova Scotia (the other one is in Cape Breton) and takes about a 1/2 start to finish. My dear, sweet husband wants to drive in everyday…1 1/2 hours, each way!!! He wants to be there for everything but my good sense may prevail as I am working out a schedule with the Rad. Tech. Maybe work it so I can have one late on Monday and one early on Tuesday so I can stay overnight at Mom and Dad’s. If I did that once or twice in the week than the travelling might not be so bad and I can bring Sara up to Mom’s with me. I’ll let you know how it works out.

Love to everyone.