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Thursday, March 31, 2011

Getting Started

Short Version: Getting chemo port today.  Visit Dr. Troung tomorrow to get cleared for chemo, which will begin Monday at 10:00 in Pratt.  I will also be getting injections Wed.-Fri. of a medication to increase my white blood cell count when doing chemo. Radiation is still up in the air and will depend on many factors that will be determined as we go.  Double Mastectomy and hysterectomy will probably take place in early November.

I am on my way to Wichita to get my chemo port installed by Dr. Nicholas and wanted to give a quick update. We got back from Houston yesterday.  We left MDA after my radiology oncologist appointment Tuesday and stayed at Stephen’s parents in Athens, TX.  It was nice to get to see them and also broke up the trip some for Delaney. Tomorrow I will see Dr. Troung so he can clear me for Chemo.  I am scheduled to begin chemo on Monday at 10 am in Pratt.  Evidently it will take 4 hours or more to administer the treatments.  I was surprised by the length of time it takes so it looks like my Mondays are shot for the next 12 weeks.  They do have Wi-Fi, so I can take my laptop in.  For that I’m grateful!  At least maybe I can get some work done while receiving treatments. 

I also got my PET Scan back and it looks clear except for the tumor that we know of in the right breast.  This is a very wonderful outcome!!  God has been at work!  I also find it odd that I have such an aggressive cancer, however it hasn’t really grown since I first found it before New Year’s?  This has to be God working.  He made the tumor grow quickly and large enough for me to find, which I did.  He also made it hurt bad enough that I had to go back into the doctor even after the first radiologist told me I was fine.  Now I truly feel he’s working again as he is holding the tumor to its original size.  It just amazes me what when I look for miracles I find they are all around.

I also visited the radiology oncologist on Tuesday.  Right now radiation is still up in the air.  If the tumor shrinks with chemo and no cancer is found in my lymph nodes during surgery then NO Radiation.  If the tumor remains the same with chemo and no cancer is found in my lymph nodes during surgery then Radiation is in the gray area.  Radiation is recommended if the recurrence rate is 15% or more.  In this scenario the recurrence rate would be about 18%.  I think I’d probably have it, but it would be my choice.  If they find in surgery that the lymph nodes are infected with any cancer, radiation is a must.  It would be 6 weeks daily for a total of 30 treatments.  I guess the radiation only lasts about 15 minutes and the entire treatment is about one hour daily with prep included.   MDA has some of  the most advanced radiation treatment options so if I have to have radiation I would go to MDA for that and be there for those 6 weeks. I hope I don’t have to have radiation as I don’t want to be gone that long, but if that is what has to happen I will do it.  Radiation has the possibility of damaging the lungs and heart and is very operator dependent, just like the surgery.  So I want to ensure I’m getting the best operator i.e. doctor and care possible.  Just like with the mastectomy and hysterectomy, skill and experience are very critical.  Since MDA does this so much the damage likelihood to my lungs and heart are almost nonexistent however with lesser experienced groups the statistics could be different.

I also saw the genetic counselor and she called me yesterday with a very interesting finding.  Evidently the BRCA-1 gene I have derives from the Ashkenazi Jewish Founder Ancestry.  This would not affect my treatments but is a very interesting insight into my heritage; as we had no idea any of our family was of Jewish decent.  By having this particular gene, the likelihood of being BRCA positive goes from 1 in 750 for the general population to 1 in 40 for this ancestry.  There are also other possible genetic disorders inherited and I’ve emailed my genetic counselor Michelle Jackson to see if I need testing for other possible inherited disorders.  Dad also found out today that he is BRCA-1 positive too with the exact same genetic malformation that I have, which indicates I received the trait from his side of the family.  People inherit good and bad genes from parents, but I know he feels bad.  However, it’s no one’s fault, it’s just the way God made us.  Now we know we have some Jewish ancestry I will have another project to do as I want to find out more about this particular lineage and their customs and cultures! Thank you God for my healing.

Friday, March 25, 2011

Chemo First

Short Version: We get to leave after the radiology oncologist appoint and PET scan on Tuesday.  So we will be home on Wednesday since the appointments are in the afternoon.  I will start Chemo for 6 months in Pratt/Wichita with Dr. Troung.  I will then come back to MDA for a double mastectomy and possibly the hysterectomy at that time too.  I may get the port for Chemo delivery next Thurs or Friday and Dr. Nicholas will do this.  I will then see Dr. Troung early the following week and we are shooting for me to begin Chemo that week too.

Today was another long day as little Miss Delaney decided to wake up at 1:30.  I put her into bed with us and she tossed and turned all night.  So I got up around 5:25 to get ready for my 8 am appointment with Dr. Wagner.  We met with Dr. Wagner’s team and they were fantastic.  All agreed that a double mastectomy was the way to go.  She also said that she might be able to get the gynecological oncologist to do my hysterectomy during the mastectomy.  I was happy about this, as I was told previously that they wouldn’t want to do this. However Dr. Wagner thought it would be fine since the hysterectomy is so minor compared to the mastectomy.  I’m glad not to have to wait for yet another step and be under anesthesia again.  She is going to try and save my breast skin so the plastic surgeon can use it as I don’t have much skin to graft.  She looked over the mammo and there is just barely enough margin to make this happen so she suggested I do chemo first in hopes the tumor will shrink and give her more margin to save my skin and make the process easier on me and the surgeons.  Of course the most important thing is to remove the cancer, so if she has to cut skin to ensure this she will.

We then met with Dr. Green and she concurs that chemo first is the best route.  It will also allow us to know if the cancer is responding to the chemo since it will possibly get smaller. She said that we could go home Tuesday after our appointment with the radiology oncologist, Dr. Smith. It’s interesting as Dr. Wagner doesn’t think I will need radiation but Dr. Green thinks I will.  So I guess Tuesday will tell.  Radiation will be 4-6 weeks and will more than likely take place in Houston, so it’s really a pretty big decision Dr. Smith will make.

I will have weekly low dose chemo for 12 weeks in Pratt with Dr. Troung then I will come back to MDA for imagining and appointments with the gynecological oncologist and reconstructive surgeon. I will then have FAC Chemo every 3 weeks for 4 times.  Once Chemo is completed, I will have to wait 4-6 weeks for the mastectomy and hysterectomy which I will do at MDA.  Then if I need radiation, I will start that sometime after the surgery; we will know more about that on Tuesday if Dr. Smith deems it necessary. 

I think chemo during this time of year and through the summer is a great idea for me as there are less illness and the kids are not in school being exposed to as many viruses.  So I’m hoping this will also help me keep healthier so I can finish the chemo on schedule.  The low dose will allow the oncologists, Dr. Troung and Dr. Green, to see how my white blood cells react and sort of ease me into the higher dose.  Also, doing chemo gives me time to get ‘adjusted’ to the mastectomy.  As Stephen says about that, don’t think of it as losing your breast, think of it as leveling an old building and putting up a fantastic new structure in its place.  Wow, that’s an interesting analogy, but at least he’s got a positive attitude too. 

 I also met a fantastic lady in the waiting room who told me she turned over her worries and fear to God and has not had side effects from her Chemo. After I got called back to see Dr. Wagner’s nurse, mom was in the waiting room with Delaney for a little while until we saw Dr. Wagner, and this precious woman told her to tell me also to ‘let it go’  This is so true and I have let this all be in the Lord’s hands.  He’s my maker and he only has the power to make this a success, not me.  I have to give up control. We are coming home next week, yeah. Thank you God for my Healing.  

Thursday, March 24, 2011

Long Day

I have decided to include a short version first with just the changes/updates for those that only want, or have time for, the facts.  For others that have the time and want the chronological just keep reading.  :)

Short Version: Had to have one lymph node biopsied as it was a little suspicious.  Preliminary pathology looks good but final results will take 3-5 days.  All else is the same.

Today was a very long day.  We started at 5 am as Delaney woke up and was stuffy and feverish.  So I gave her pain reliever and tried to put her back to sleep.  She went to sleep around 5:30 and I just decided to get up and start the day since the alarm was scheduled to go off at 6 am.  Stephen stayed with Delaney, since she is still teething, and we didn’t want to try and get her cleared today.  Mom and I rode the shuttle and left at 7:30 for a 9 a.m. appointment.  Lucky we arrived early as they scheduled my lab for 7:15 but forgot to tell me.  So we headed downstairs and got labs drawn.  We then went back up for the mammo and ultrasound.

They took me back early and I got the mammo done.  Then I had over an hour and a half of wait time until they called me back for the ultrasound.  However, in the meantime I was waiting in a hospital gown but hey I got to keep on my pants.  I’m truly learning to love those gowns, and the blue just does great things for my complexion.  I was lucky enough to meet a wonderful MDA volunteer.  She is a breast cancer survivor; she set and talked with me for a while.  We talked about how God loves us and the fact that we have to give our situation up to faith as we don’t have control, only God does.  I also asked her about how she deals with the fear of recurrence and she said the same way, through faith.  If he got us through this once he will give us strength again.  The outcome might not be what we want but it’s what he wants and he is our maker and knows our very sole.  She suggested a book called ‘Praying through Cancer” and said it’s available at the resource center.  I didn’t make it down there today to get it but I’m going to try and check it out soon.  She also said her chemo and radiation wasn’t an issue and didn’t slow her down at all.  She said she tells her story as she wants others to know that it’s possible to have very few side effects. She said of course we are all different, however it’s possible. 

Evidently after she spoke with me, she ended up talking with mom when she was in the waiting room. They got to talking and Mom said she was from Kansas. The Volunteer, whose name I think was Diane, said I was just talking with a young lady from KS does that happen to be your daughter?  Mom said yes and they continued talking for about an hour.  I was in my imagining appointments for almost four hours so everyone had plenty of time to make the connections. She also asked mom to remember to tell me to ‘take it one day at a time’.  It’s ironic she said this, as my cousin Rebecca sent me a pull tab that I put on my purse and it says the same thing.

So after the mammo I had the ultrasound.  During this it appeared one of the lymph nodes might be a little larger than normal and the radiologist decided  to go ahead and biopsy it.  Since I’m so young and my cancer is so aggressive she said they are going to be aggressive right back and leave no stone unturned.  So I had one lymph node biopsied.  It wasn’t really bad at all; it was like giving blood but with a larger needle.  The radiologist said the preliminary pathology looked good but the final would be 3-5 days.  I’m a little sore tonight but nothing compared to the breast biopsy.  The radiologist also said that the reason my cancer was hurting is that there is a blood vessel with nerves around it and the cancer is pushing on it causing the pain.  She was very gentle, very compassionate.  When I was finally released from the biopsy at noon we ate at the cafĂ©. 

Right after I walked out Stephen calls and he had taken Delaney to the doctor.  She evidently has a double ear infection due to teething.  The double ear infection is nothing new and the pediatrician had said if she had one more then she needed tubes.  So when we get back I will be calling our ENT, Dr. Harris.  Yes, it’s crazy our family has an ENT but we do; as both Gavin and Arrington have had surgery by him and so have I.  Delaney has been boarder line for several months and since I now have this cancer, I think she and I will both be better if she gets tubes ASAP.  They made so much difference with Arrington and I’m sure they will help her too.  The doctor also tested her for Strep but that was negative, thank goodness.  He gave her an antibiotic for the ear infections and said she should be OK soon; those teeth popping in are just giving her a run for her money and ours.  She should be able to be cleared tomorrow as she’s already looking better. 

After lunch Mom and I met with the genetic counselor.  It was enlightening and she pedigreed our family.  From just looking she said she would guess the BRCA 1 gene came from Dad’s side.  Since he was tested on Tuesday, we’ll know if that is correct shortly.  We’re hoping to hear by early next week his results.  I’m confident Dr. Nicholas will call him immediately once they are in. the good part about BRCA 1 is that it doesn’t really affect men as much as it does women.  It also has less effect on them the BRCA 2.  So that is a positive point if my brothers do end up having it.  

We also met with a high risk breast specialist.  Both she and the geneticist discussed my options and it seems to be unanimous that a double mastectomy is the best bet.  It’s important to remember that even with the breast removal that there is still about 5% of breast tissue left and there is the possibility of that tissue getting a recurrence.  I think this is why radiation is being considered but won’t know all about that until we see Dr. Smith, the radiology oncologist, next Tuesday. I will also be referred to a gynecological oncologist to monitor my ovaries until they can be removed after the breast cancer treatment. They also suggested that I have my hysterectomy by this specialist as they will ensure they get out all the tissue and are familiar with the procedure for prophylactic treatment.

I also found out the PET scan is next Tuesday morning.  I asked for a schedule when I checked in today and the front desk staff gave it to me but no one has called me to tell me that yet.  We finally got back to the hotel around 4:15.  We were actually on the same van as with the couple we left with at 7:30.  It was kind of funny since we were on the same schedule.

We then went and ate dinner and met a woman at the next table and began talking.  She gave us her card and said she’d like to know how I was doing and that she would pray for us.  She said that she knew it might be odd, but she could feel and see, by a sense she had, that I would be a survivor of this.  Mom and I talked about that and it made us feel good.  We told her how God was already acting for me and that we knew prayer was working and the more the better.  I also talked with her about a lump in her breast they were watching, and suggested that she get it biopsied, as they told me mine was not malignant when they first saw it January too.  I don’t mean to be an alarmist, but how can one know it’s not cancer unless it’s tested??  So all of you reading my blog, if you think something isn’t right health wise, pursue it, as you know your body best.  And thank you God for my healing!

Wednesday, March 23, 2011

Oh the Fun

OK, it’s crazy around here.  Delaney is finally getting her first teeth.  She’s over 11 months old so it’s certainly time; however with these teeth apparently she’s also going to have a tough time.  She had a slight cough and runny nose yesterday along with swollen gums.  Today she has a cough, runny nose, fever, irritability, and swollen gums.  Oh the joy!  When we got back to the room after touring Pearland, the place we used to live, her temp was 103.  So we gave her ibuprofen and a lukewarm bath and now it seems to be going down.  She’s not lethargic, so that is a plus, and she wants to play, so we’re happy there: but, poor little baby.

To make matters worse, since she’s running a fever, I don’t think she’ll be cleared to visit MDA tomorrow with us.  We have to have her cleared daily in order for her to be at the facility. I completely understand the requirement; it’s just unfortunate that she has to encounter teething during this already stressful time.  Tomorrow is just my follow up mammo and ultrasound in the morning along with a possible biopsy. Then its genetic counseling, so Stephen can stay in the hotel with her tomorrow, as Mom wants to hear about the genetic aspect since it could affect her or my brothers, too.   Friday though, well that is another issue.  We are praying that Delaney will have those teeth in by Friday so she can be cleared as Friday is a big day since we see the surgeon and I’d like both Mom and Stephen there because a lot of decisions will be made.

I just can’t take all this fun!  Of all the times for her to cut her first teeth!!  She’s miserable and it makes me miserable.  But this too shall pass.

I also got a call and there isn’t an appointment for the radiology oncologist until Tuesday at 3.  I was hoping we’d have things decided on Friday, but I guess not.  Just more waiting; and that is not fun.  Patience has never been my virtue and I just want to get this process started so I can see the light at the end better.  I just wish they would have scheduled it all two weeks ago instead of waiting until I got her to decide on a PET scan and that I should see the radiologist.  If they would have done that, I think I could have been seen this week.  I still don’t have the PET scan scheduled, so I guess if I don’t hear about that before then I will ask tomorrow morning when I’m there. 

I really felt they could have scheduled all these visits two weeks ago based on the initial referral as the info they have had is the same they received then, since apparently the BRCA 1 positive issue doesn’t affect my particular treatment for the actual cancer it’s more of the prophylactic that will be affected by this positive outcome.  Thank you God for my healing. 

Tuesday, March 22, 2011

A day At MDA

Hello everyone.  I’ve finally gotten in the attitude to update what’s happening.  We had a wonderful vacation, I just wish time would stand still and we didn’t have to go back to reality.  Well we are in reality now, and had our first visit at MD Anderson (MDA) today.  It was a wonderful experience and the culture of caring is a true identity they express in this world renowned medical complex.

Since I haven’t yet posted this I did get my BRCA test results on Friday and I tested positive for BRCA 1.  This means mom, dad, and my brothers need tested now as it’s genetic.  So dad went in today to Dr. Nicholas and we are scheduled for genetic counseling at MDA on Thursday which we hope they will be able to test mom.

I met with my medical oncologist today Dr. Green.  She was great and told us about the same thing as Dr. Troung did.  It’s still grade 3, triple negative, and looks like Stage 2.  It also looks like I will be able to do chemo in Pratt, as what they will treat me with is standard chemo.  Right now the plan looks like I will do a low dose once a week for 6-8 weeks.  She said I’d have less side effects and it will also allow us to see how my white blood cell count does with chemo.  Then I will do FAC chemo every three weeks for a yet determined amount of time.  Dr. Green also told me to have Dr. Nicholas in Wichita put in my port, as at MDA they are behind 4-6 weeks for this as they only have a few docs that do that. I’m confident Dr. Nicholas can do that, and I’m also happy to have her involved with my care. I am very happy that I will be able to do the chemo in Pratt so this made my day.

Dr. Green did complicate things some as we may need to do radiation now after the mastectomy but Dr. Wagner will decide this on Friday as she’s the surgical oncologist.  If I need to do radiation it will be 4-6 weeks and it will probably be at MDA.  So that isn’t so great but I will do what I have to in order to beat this thing.  If they do radiation then they can’t start the reconstruction until after the radiation.  That isn’t great either, but if it’s required we’ll work through it.

They will also do a PET scan to insure the cancer isn’t anywhere else; the MRI shows it’s not but this will be certain.  I will meet with Dr. Green on Friday after I see Dr. Wagner.  She’s nice enough to come in on her non-clinical day to meet with us to figure out a treatment plan.  Which I’m grateful for, as I’d like to know before the weekend. It’s still up in the air if I will do the mastectomy or chemo first but by Friday it looks like we will know a lot more.  I’m hopeful and feel much better about my care since we’ve taken the first steps. 

All in all I’m happy and I’m more positive them I’ve been in the last few days.  Dr. Green said mine is curable and this is what they want to do; but they also want to prevent recurrence as with my type the recurrence is more likely so more aggressive treatments might be necessary like the radiation.  Normally radiation is not required if a mastectomy is preformed but sometimes, it can be so we’ll see soon.   I feel your power of pray and positive thoughts coming my way.  Keep it up and “Thank you God for My Healing”

Monday, March 14, 2011

It's Amazing

Hello everyone today has been a fabulous day.  It was the first full day in Breckenridge and we’ve had a blast.  We went sledding and the kids loved it.  Gavin got on skis for his very first time and was great.  Arrington was such a big girl she even sledded by herself.  And little eleven month old Delaney went down the hill with me a few times.  It was very fun and refreshing to be somewhat of a kid again.

I also talked to my surgeon and my MRI came back GREAT.  No evidence of cancer in my left breast or in my lymph nodes.  Obviously they won’t be certain about the lymph nodes until they go in during surgery but this is very positive news.  I was about to hyperventilate when Dr. Nicholas’s office called.  I just couldn’t bear any more bad news.  The nurse said it was about time I got a good report and having no cancer, anywhere else they could see from the MRI, is very good. 

I also found out a wonderful woman that I have the pleasure of knowing and her husband have been at MD Anderson for several months.  She was the teacher for my finding your passion class.  That class truly was a turning point in my life and makes me appreciate the little p’s of life not just the big P’s.  She’s offered to show me around and help us navigate the MD Anderson campus.  It’s amazing what support I have and I am very lucky to have so many that care and are saying “Thank you God for Miranda’s healing” Have a fantastic evening and  keep the positive energy and prayers coming my way.  I can feel them working.