I had a visit with my Oncologist here in Melbourne today. I will be adding his photo to the blog here as part of my "team". We discussed several things and I found that I will need to get the Swine Flu shot when it comes out in October to help protect my compromised system. I won't change my diet, although most foods will taste pretty bad. He just encourages me to eat what I can with the exception of raw or undercooked foods. Good advice there.
I realize that this whole thing sets me back six months (or a year total), but when I really think about it I think, "six months....from what?" My degree? Work? My children? No, I've decided that this is not setting me back, it is helping me take a step forward for the next several years of my life. So taking things a little slower for awhile is okay by me. And all I ask of anyone is patience....and faith.
I also talked to my doc about my thesis for my Master's degree. I asked him that from a physicians standpoint, which would he rather read: Information on Triple Negatives or Breast cancer and how it affects the lives (livelihood) of those it touches? He said he'd rather read about how patients learn to manage their day to day lives (i.e., work, family, homes). Believe me, everything changes and most of it I no longer stress over.
So, here's my charge to all of you....Of those two subjects, what would you rather read about? And if there's anything else you would like to add, please, please, feel free to do so. I don't just want to write any thesis paper, I want to write a GOOD one! Cheers~
Friday, August 28, 2009
Tuesday, August 25, 2009
Appointment after Appointment
The last few weeks have consisted of doctor appointment after doctor appointment. Virtually every single day I am off to meet a new specialist who checks another part of me to ensure I can withstand the chemotherapy.
My journey thus far has not been uneventful. I have had the opportunity to meet brilliant people and ask thousands of questions of them - and others online, to educate myself.
My newest doc to join the team is a heart specialist. What a nice guy....ok, what a fine man he is (Peruvian)...and here's a good laugh - I am his youngest patient...woohoo - a good sign for the human race. :) According to the Muaga scan, my heart "number" is 71 and anything over 50 is good. There are only two words for the numbers, good and bad. 51 is equal to 71 is equal to 91 so just because I am above the 50 mark, doesn't mean my heart is better than someone with a score of 55.
My appointment on Monday in Tampa resulted in the drain not being removed. It is still stuck in my side and I hope for it to come out tomorrow, but I won't hold my breath. The idea is to get the fluids/drainage way down. If it keeps giving me a problem, I'll have the expanders removed until after the chemotherapy. I will not screw around with my life just to have nice looking twins. I can have them fixed later. My priority is to get through the next six months - alive and as healthy as I can be.
One more thing I'd like to make special note of. Laurie Erickson has an online scarf and hair ornament site. There are some beautiful scarves and barrettes and other accessories. Laurie also has a program called "It's a Wrap". This program donates a lovely scarf to women with cancer who are/have lost their hair. Isn't this amazing?? Now think of the number of women you think have cancer.....then multiply that by 100 and you will probably be getting close...
She is actually having one made for me and I'm quite grateful. I am just so impressed at how they treat cancer patients that I want to personally acknowledge her right here. Thank you, Laurie!! You can visit her site at: www.franceluxe.com
My journey thus far has not been uneventful. I have had the opportunity to meet brilliant people and ask thousands of questions of them - and others online, to educate myself.
My newest doc to join the team is a heart specialist. What a nice guy....ok, what a fine man he is (Peruvian)...and here's a good laugh - I am his youngest patient...woohoo - a good sign for the human race. :) According to the Muaga scan, my heart "number" is 71 and anything over 50 is good. There are only two words for the numbers, good and bad. 51 is equal to 71 is equal to 91 so just because I am above the 50 mark, doesn't mean my heart is better than someone with a score of 55.
My appointment on Monday in Tampa resulted in the drain not being removed. It is still stuck in my side and I hope for it to come out tomorrow, but I won't hold my breath. The idea is to get the fluids/drainage way down. If it keeps giving me a problem, I'll have the expanders removed until after the chemotherapy. I will not screw around with my life just to have nice looking twins. I can have them fixed later. My priority is to get through the next six months - alive and as healthy as I can be.
One more thing I'd like to make special note of. Laurie Erickson has an online scarf and hair ornament site. There are some beautiful scarves and barrettes and other accessories. Laurie also has a program called "It's a Wrap". This program donates a lovely scarf to women with cancer who are/have lost their hair. Isn't this amazing?? Now think of the number of women you think have cancer.....then multiply that by 100 and you will probably be getting close...
She is actually having one made for me and I'm quite grateful. I am just so impressed at how they treat cancer patients that I want to personally acknowledge her right here. Thank you, Laurie!! You can visit her site at: www.franceluxe.com
Thursday, August 20, 2009
Dilated Eyes
Hi everyone!
Yesterday, I had to return to the ER in Tampa. I had a reaction to all the meds they have had me on and my left eye dilated and would not return to normal. It is still not completely back to where it should be, so it is blurry, but it is getting better. Fighting a headache that goes along w/dilated eyes, but it is going away as all the meds wear off.
I stopped taking all pain medications because of this, so I get to feel every little pinch or ping from Monday's surgery and I must admit that I believe my threshold for pain has been steadily rising.....positive thoughts, positive thoughts....
Today I'm still nauseated, but I'm sure that is due to the heavy antibiotics I am on. I will say that I am very pleased thus far with Monday's surgery. The scar lines will be much better as Dr. Albear did a fine job tightening up the area's of concern.
Anyway, this morning, I had to go in for what is called a "MUAGA" (sounds like mugga). After the nurse destroyed a couple more of my veins, they finally got a butterfly in, drew blood, spun it w/radioactive stuff and put it back in me. (Doesn't this sound fun??) I then had a machine placed closely to my side and above me that took 20 total minutes of pictures of my heart. The MUAGA is designed to provide the doctors a baseline and tell them how strong your heart is (to ensure you can take the killer chemo they want to administer). It was tolerable, but since the procedure, I've had a bit of heartburn and am feeling tired, which is unusual for me....oh well, small cost for big news I guess.
Oh, I can't wait until my days no longer revolve around doctor's offices and people poking me with needles. Within the next week or two, a port (for the chemo) will be inserted into my chest and all blood and drugs will be put in/out through that, so from that angle there is light......
Wishing you all a special weekend and hoping you take the time to really enjoy everything around you.....because I have learned that everything can change in a New York minute...now, go out and laugh, smile, dance, be silly - whatever makes you feel good!!
Yesterday, I had to return to the ER in Tampa. I had a reaction to all the meds they have had me on and my left eye dilated and would not return to normal. It is still not completely back to where it should be, so it is blurry, but it is getting better. Fighting a headache that goes along w/dilated eyes, but it is going away as all the meds wear off.
I stopped taking all pain medications because of this, so I get to feel every little pinch or ping from Monday's surgery and I must admit that I believe my threshold for pain has been steadily rising.....positive thoughts, positive thoughts....
Today I'm still nauseated, but I'm sure that is due to the heavy antibiotics I am on. I will say that I am very pleased thus far with Monday's surgery. The scar lines will be much better as Dr. Albear did a fine job tightening up the area's of concern.
Anyway, this morning, I had to go in for what is called a "MUAGA" (sounds like mugga). After the nurse destroyed a couple more of my veins, they finally got a butterfly in, drew blood, spun it w/radioactive stuff and put it back in me. (Doesn't this sound fun??) I then had a machine placed closely to my side and above me that took 20 total minutes of pictures of my heart. The MUAGA is designed to provide the doctors a baseline and tell them how strong your heart is (to ensure you can take the killer chemo they want to administer). It was tolerable, but since the procedure, I've had a bit of heartburn and am feeling tired, which is unusual for me....oh well, small cost for big news I guess.
Oh, I can't wait until my days no longer revolve around doctor's offices and people poking me with needles. Within the next week or two, a port (for the chemo) will be inserted into my chest and all blood and drugs will be put in/out through that, so from that angle there is light......
Wishing you all a special weekend and hoping you take the time to really enjoy everything around you.....because I have learned that everything can change in a New York minute...now, go out and laugh, smile, dance, be silly - whatever makes you feel good!!
Tuesday, August 18, 2009
Back Home!
Well, yesterday's (Monday, Aug 18th) surgery went pretty well and they let me come home. They opened up both breasts with specific attention to the left side. I had way too much fluid built up and they needed to ensure it was not a major infection. The "stuff" was sent for culture to make the determination. They also removed some fluid from the expander on the left side to give my breast a better chance to heal. They also put in another drain on the left side.....bummer....another new hole...lol Anyway, they were able to leave the expander in for right now and I'm hoping this will clear up very quickly because I was really hurting both before and after the surgery. BUT, it also gave Dr. Albear the opportunity to make a better closing on both sides - which I understand scarring will be more minimized (I think).
Back on pain medication for a little bit. Geesh, I know I'm going to get through this but I hate taking antibiotics and painkillers as my stomach is now always upset.
This time I will return to get the drain out on Monday (instead of two weeks) and then back over there again on Wednesday to have them recheck everything. I'm back to no driving until further notice, which means I may miss my first night of class for this next semester. That's the pits because I want to get through this one last class....maybe my awesome son will take me.....I hope, I hope, I hope....
Back on pain medication for a little bit. Geesh, I know I'm going to get through this but I hate taking antibiotics and painkillers as my stomach is now always upset.
This time I will return to get the drain out on Monday (instead of two weeks) and then back over there again on Wednesday to have them recheck everything. I'm back to no driving until further notice, which means I may miss my first night of class for this next semester. That's the pits because I want to get through this one last class....maybe my awesome son will take me.....I hope, I hope, I hope....
Friday, August 14, 2009
Actual Information
Well, today I had an appointment with my new Oncologist, Dr. Hoang, (I switched as my Tampa doc recommended a "Board Certified Oncologist") and I really got along well with him. He was kind, compassionate, and very informative.....From the beginning, this is what I learned, and I'm sharing it so that it might help someone else:
When learning a breast cancer exists, doctors look at age of patient, the size of the tumor(s), whether or not it invaded the lymph nodes, estrogen/progesterone positive or negative, grade (1, 2, 3), Her2neu (protein), and whether or not it is invasive (reaching out) or insitu (meaning encapsulated not reaching out). As you can imagine, these results can vary person to person.
As an example - One might be 45 (like me), with a 1.5 cm tumor, N0 (no lymph nodes involved), ER/PR negative, Grade 3 (very aggressive), Her2Neu negative, and invasive. To read it as a doctor puts it, I would be listed as: T1c, N0, Mx, ER/PR (-), Her2neu (-), and IDC (Invasive Ductal Cancer). (Or this is close anyway)
Next, Dr. Hoang explained (Adjuvant)chemotherapy to me (there are 4 generations). The first generation consisted of what is called CMF x6 ( x6 =6 months). The second generation of chemo produced AC x4 (if tumors were over 2 cm). The third one consists of AC x 4 (3 months), and then Taxane x 3 (weekly)(especially if lymph nodes are involved). Finally, the mean ones, the fourth generation. These basically kill your body without killing you and are usually reserved for Stage III and IV patients. They are called FAC, FEC, and FEC + Taxane. My sister Pam, a Stage III Triple negative endured the FEC + Taxane. She was miserable.
As for me: I am a Stage 1, Grade 3 patient; I get only one shot at making all cancer go away; I will do six months of chemotherapy 3/3 * (3 months of AC and 3 months of Taxane); The first three months will be the hardest; It is four rounds; once every three weeks; The last three months (Taxane) are weekly and should be easier on my body.
Now, this should be how my body progresses.
Day 1 - Day 7: First 3-4 days nausea/vomiting/tired :(
Day 8- Day 14: Low blood count - watch for infection (this is the most worrisome)
Day 15 - Day 21: Recovery period - I should feel pretty good. :)
As for tests, he is ordering a PET scan, a MUGA (heart ultrasound to ensure my heart is good - I know it is), and making plans to implant the port.
Wow, is this is a lot of information or what?? Once he laid it all out for me, I was able to better understand where I am at. As for school, he wants my primary focus to be on this care and getting better. It IS the beginning of my future. My chemo will be delayed until the end of September or first of October now due to this Monday's surgery so I am going to do this one last class and hope, hope, hope, for the best. After that, I'm taking a break and holding on for dear life.
I hope that I have explained this so that anyone who reads it can at least gather information and do research on their own in the unfortunate event it touches someone they know.
So, after the doctor's appointment, it was Chyla and Reina's turn. Shots with the Doc. Not good, poor little Reina screamed and of course, I dang near cried. She is such a little prissy...but alas, she was ok after they gave her to my sister.
This evening is closing with me watching Mo'nique in "Phat Girlz" - a good flick, and eating a bit of "Chunky Monkey" ice cream.....because I can....
When learning a breast cancer exists, doctors look at age of patient, the size of the tumor(s), whether or not it invaded the lymph nodes, estrogen/progesterone positive or negative, grade (1, 2, 3), Her2neu (protein), and whether or not it is invasive (reaching out) or insitu (meaning encapsulated not reaching out). As you can imagine, these results can vary person to person.
As an example - One might be 45 (like me), with a 1.5 cm tumor, N0 (no lymph nodes involved), ER/PR negative, Grade 3 (very aggressive), Her2Neu negative, and invasive. To read it as a doctor puts it, I would be listed as: T1c, N0, Mx, ER/PR (-), Her2neu (-), and IDC (Invasive Ductal Cancer). (Or this is close anyway)
Next, Dr. Hoang explained (Adjuvant)chemotherapy to me (there are 4 generations). The first generation consisted of what is called CMF x6 ( x6 =6 months). The second generation of chemo produced AC x4 (if tumors were over 2 cm). The third one consists of AC x 4 (3 months), and then Taxane x 3 (weekly)(especially if lymph nodes are involved). Finally, the mean ones, the fourth generation. These basically kill your body without killing you and are usually reserved for Stage III and IV patients. They are called FAC, FEC, and FEC + Taxane. My sister Pam, a Stage III Triple negative endured the FEC + Taxane. She was miserable.
As for me: I am a Stage 1, Grade 3 patient; I get only one shot at making all cancer go away; I will do six months of chemotherapy 3/3 * (3 months of AC and 3 months of Taxane); The first three months will be the hardest; It is four rounds; once every three weeks; The last three months (Taxane) are weekly and should be easier on my body.
Now, this should be how my body progresses.
Day 1 - Day 7: First 3-4 days nausea/vomiting/tired :(
Day 8- Day 14: Low blood count - watch for infection (this is the most worrisome)
Day 15 - Day 21: Recovery period - I should feel pretty good. :)
As for tests, he is ordering a PET scan, a MUGA (heart ultrasound to ensure my heart is good - I know it is), and making plans to implant the port.
Wow, is this is a lot of information or what?? Once he laid it all out for me, I was able to better understand where I am at. As for school, he wants my primary focus to be on this care and getting better. It IS the beginning of my future. My chemo will be delayed until the end of September or first of October now due to this Monday's surgery so I am going to do this one last class and hope, hope, hope, for the best. After that, I'm taking a break and holding on for dear life.
I hope that I have explained this so that anyone who reads it can at least gather information and do research on their own in the unfortunate event it touches someone they know.
So, after the doctor's appointment, it was Chyla and Reina's turn. Shots with the Doc. Not good, poor little Reina screamed and of course, I dang near cried. She is such a little prissy...but alas, she was ok after they gave her to my sister.
This evening is closing with me watching Mo'nique in "Phat Girlz" - a good flick, and eating a bit of "Chunky Monkey" ice cream.....because I can....
Wednesday, August 12, 2009
Changes Every day....
First, I'd like to thank everyone for all the birthday wishes and lovely gifts! I didn't even realize that it was here with everything else going on and *poof* another year has rolled by! The upside is that next year - I'll be ready for it!! :)
Made it back to Tampa to meet w/the Chief of Reconstruction, Dr. Gould, today. I've been having what I thought was a minor issue (redness/swelling) with my left breast. It seemed to start when they took out the drain last week. Dr. Gould was very concerned and almost put me back in the hospital today. At my request, she allowed me to come home and has arranged for me to go back into surgery not later than Monday morning. Apparently, I have quite an infection - hopefully just the skin so they need to clean it all up and they want to close the incision a little better, I guess. So, they will re-work BOTH incisions (left and right). Right now I'm a little down about it (from the pain perspective), but I know that this too shall pass.....with good painkillers - and less morphine....The hope is to do the surgery and get me back home where I can rest.
Each day that goes by is one day closer to my being completely free of this....and that is what I will continue to focus on. Love to all - have a wonderful evening!!
Made it back to Tampa to meet w/the Chief of Reconstruction, Dr. Gould, today. I've been having what I thought was a minor issue (redness/swelling) with my left breast. It seemed to start when they took out the drain last week. Dr. Gould was very concerned and almost put me back in the hospital today. At my request, she allowed me to come home and has arranged for me to go back into surgery not later than Monday morning. Apparently, I have quite an infection - hopefully just the skin so they need to clean it all up and they want to close the incision a little better, I guess. So, they will re-work BOTH incisions (left and right). Right now I'm a little down about it (from the pain perspective), but I know that this too shall pass.....with good painkillers - and less morphine....The hope is to do the surgery and get me back home where I can rest.
Each day that goes by is one day closer to my being completely free of this....and that is what I will continue to focus on. Love to all - have a wonderful evening!!
Friday, August 7, 2009
Right decision
Well, the last couple of days, I have been getting these awful pains in my chest. I understand that it is normal and that its the nerves trying to "re-fire" up. Dang near makes me jump out of my skin at times. After little sleep the last few days, I finally rested last night and am quite grateful to allow my body to rest. I can't wait till I am over this "exhausted" feeling....whew it's enough to wear anyone down. I'm not as thrilled as everyone else seems to be at how my breasts are healing. I find it hard to look at, but I know its only temporary, so I continue to think positive thoughts.
I am so glad I prayed hard before making my final decision because I did get "some" good news yesterday. I definitely made the right decision to do the bilateral. During the final pathology of my breast material, more cancer was discovered in my right breast where it originated. It was so small that the mammo, MRI and ultrasound missed it and it would have gone unnoticed for some time. Had I just done the lumpectomy, it very well could have been a lethal decision. Leslie (my team leader) made it a point to call me and let me know about it - so one more little miracle to make note of.....
I find that in my quiet time when I can calm my spirit to listen, that is when I hear HIM the best and understand that HE is carrying me more than I ever thought possible. I don't think I could keep a lighter side to all this if not for my faith. I have never been one to push or pull anyone as I believe that we must find the Lord in our own due time.....but if you have never witnessed a miracle, you are in the process of it now. There is no doubt in my mind that I will survive by the grace of God.
I am so glad I prayed hard before making my final decision because I did get "some" good news yesterday. I definitely made the right decision to do the bilateral. During the final pathology of my breast material, more cancer was discovered in my right breast where it originated. It was so small that the mammo, MRI and ultrasound missed it and it would have gone unnoticed for some time. Had I just done the lumpectomy, it very well could have been a lethal decision. Leslie (my team leader) made it a point to call me and let me know about it - so one more little miracle to make note of.....
I find that in my quiet time when I can calm my spirit to listen, that is when I hear HIM the best and understand that HE is carrying me more than I ever thought possible. I don't think I could keep a lighter side to all this if not for my faith. I have never been one to push or pull anyone as I believe that we must find the Lord in our own due time.....but if you have never witnessed a miracle, you are in the process of it now. There is no doubt in my mind that I will survive by the grace of God.
Tuesday, August 4, 2009
Quicker Picker Upper
Well, yesterday was kind of a "quicker picker upper day" - yeah, just like the paper towels. That Nick fella is an amazing young man. The video drew me in and wiped away my tears (cuz my new(er) girls felt like they wanted to explode!). They still seem so swollen but I am sure they will want to put more "stuff" in tomorrow, hence, more sleepless nights. Hey, it's starting to look good on me though! Had my hair trimmed to the shoulders today. It seems that it will stand a better chance of survival if it is shorter. So be it then.
Tomorrow, I go back to Tampa to get these dang drains "ripped" out of my chest - one in each side. I've been quietly praying that just one woman would say, "Hey, don't worry it's not so bad", but generally it seems they get a little pale just talking about it and a cuss word follows....oh yyaayy for me, one more great life experience to make note of and write about. I'll just thank God if I don't clock the Doc!! Just kidding of course - but I will definitely have to have to something in both hands that is firmly in place to prevent reaction.
Hmmnn...sure am missing my co-workers as of late. You all are a great group. For the ladies in Admin: Angie - Chocolate is futile; have a nuts and berries for me, please. Donna - Sure, when I'm better. Mary - please relax, take Jax and Gabby for a walk!! :) And Dee - thank you for handling that, I appreciate it!
Wishing you all a great rest of the week! Don't forget to thank God for all the miracles you are witness to. I see them all around now....
Tomorrow, I go back to Tampa to get these dang drains "ripped" out of my chest - one in each side. I've been quietly praying that just one woman would say, "Hey, don't worry it's not so bad", but generally it seems they get a little pale just talking about it and a cuss word follows....oh yyaayy for me, one more great life experience to make note of and write about. I'll just thank God if I don't clock the Doc!! Just kidding of course - but I will definitely have to have to something in both hands that is firmly in place to prevent reaction.
Hmmnn...sure am missing my co-workers as of late. You all are a great group. For the ladies in Admin: Angie - Chocolate is futile; have a nuts and berries for me, please. Donna - Sure, when I'm better. Mary - please relax, take Jax and Gabby for a walk!! :) And Dee - thank you for handling that, I appreciate it!
Wishing you all a great rest of the week! Don't forget to thank God for all the miracles you are witness to. I see them all around now....
Monday, August 3, 2009
Renewing My Strength
As if one miracle is not enough, one more message bonked me in the head today. It came via Facebook and it deeply touched my very soul. I feel as though my predicament is minimal compared to what this young man has endured all of his life, but I know that God will only give me as much as I can handle. For me, I laid in my bed for the first time last night and was frustrated this morning because it took me 10-15 minutes to be able to sit up (my shoulders hurt immensely), it just doesn't compare.
I wish I could personally thank this young man - Nick - for helping renew my inner strength today. And I thank the good Lord for continuing to lead me.....
I urge everyone to watch this - and remember HIM when you are having a rough day. May we all be blessed with an attitude like this.
You can watch his short video on You Tube at:
http://www.youtube.com/watch?v=_jeOguqNIAo
I wish I could personally thank this young man - Nick - for helping renew my inner strength today. And I thank the good Lord for continuing to lead me.....
I urge everyone to watch this - and remember HIM when you are having a rough day. May we all be blessed with an attitude like this.
You can watch his short video on You Tube at:
http://www.youtube.com/watch?v=_jeOguqNIAo
Sunday, August 2, 2009
Minor Setback
Well, as things go, I had a minor setback yesterday. It is the one thing you don't want to happen during recovery. Aside from being incredibly exhausted, I started running a fever and thought the new girls would explode. Overnight, it jumped up to 101.5, which is usually an indication that there is an infection or something. I took a Tylenol around 3am as my head was killing me, and by 8am, my temp was back down to 99.7. Thank goodness.
I guess I've probably been doing a little more than I should, but life continues to go on - and so does dust and dogs! :) I am going to look at it as a gentle reminder to take it very easy.
My sister went back home to Virginia yesterday. I'm so glad she was here. She has been through this already and was a great source of information and comfort.
As for today, I will step back and take it easy so as not to upset this delicate healing period.
I guess I've probably been doing a little more than I should, but life continues to go on - and so does dust and dogs! :) I am going to look at it as a gentle reminder to take it very easy.
My sister went back home to Virginia yesterday. I'm so glad she was here. She has been through this already and was a great source of information and comfort.
As for today, I will step back and take it easy so as not to upset this delicate healing period.
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