My New Year

Last Friday was the one year anniversary of my diagnosis. This is my new year. As much as I have control over certain things, I have made resolutions. I live my life differently. I don't let the little things bother me as much, and I truly feel sorry for people who get caught up in unnecessary things just to make themselves look or feel better. That feeling they have is only temporary. I pray more, read more, talk more, feel more, and have become much more stable in who I am.
There are down days too. I posted on my facebook wall that I have cried more this last month than in the last year mostly due to my frustration of my limitations. I am still limited physically, mentally, and emotionally. When I get very busy those things rear their ugly heads. I'm still figuring out how to deal with that when it happens.
This blog is not finished for me, because this journey is not finished for me. Today, I have to go and have my port flushed and they are doing bloodwork in preparation for my scans in November. I wouldn't be honest if I didn't say I'm nervous about the upcoming scans, but I have other things to concentrate on right now. Like myself, school, my dissertation, and of course my daughter's wedding!

My jumbled thoughts

I'm feeling better but a bit jumbled lately. I have a lot in my mind and it makes me crazy sometimes.

First, School will be starting soon. I'm so excited to see everyone and be teaching my students again. I'm worried about my stamina though. I'll make it through the first day I'm sure, but then not being exhausted for the second day concerns me.

Second, my dissertation process is SLOW! I kind of knew it might be, but I'm a little frustrated with myself because I'm not as quick at it as I was before.

Third, the neuropathy. It will be fantastic for a few days and then BAM! I'm in so much pain I can't stand it. I even cut my thumb pretty bad this week and didn't feel it.

Fourth, I just need to be sleeping at night. I need restorative sleep. My mind will constantly go go go about things I cannot fix and/or I have some pain issues.

Sorry for the downer of a post. It's just where I am today.

All of my Doctors

I have so many doctor and scan appointments now! I saw my radiation oncologist last Friday and my medical oncologist today. Radiation thinks I look good and after my mammogram they want to see me. Medical oncology has decided to start me on Tamoxifin and see how I do. If I don't do well, then he'll stop it. He's concerned about the neuropathy, but we really won't know the extent of the damage for about a year. He wants me to get moving as best I can, so I'm probably going to join the gym so I can ride stationary bike to start. Luckily, with a letter of medical necessity from him, it'll be paid for.
So, I return in two months to him so they can flush my port, and in 4 months after I have a full body scan. Boy is November and December filling up!

Step 1

There are a few things I hinted at that will be changing for me as I continue my staying cancer free journey. My cancer was not genetic, so there are a few things I am going to change in order to give myself every fighting chance to not get cancer again. My cancer has a high probability of reoccurring, but I'm not giving it that chance. With these changes, it will happen.

So....step one

Change what I am putting IN my body. I LOVE junk food, and sugar, and especially white breads and pasta....no more.
For the last two weeks, Mark and I have been cutting out all bleached flour sources. We actually have had no pasta( loving zoodles!) and only whole grain bread(but VERY limited). Also, we have had no sugar unless it comes from a natural source like fruit.
It has been hard, and I have slipped once or twice, but instead of giving up, I forgave myself and moved on.
Actually, I craved ice cream the other night. I did have some, and it didn't taste very good to me.
I have also lost 8 pounds!
So....what do we eat?
Well, for instance, last night we had Italian sausage on the grill. It is locally made, so I know what is in it. Normally we would have these sausages on a roll with chips and dip. Tonight, we had the sausage without the rolls, peppers and onions sauteed in a little bit of olive oil and beautiful large portabella mushrooms grilled. It was so good.

This is the first change we are making, once we get this down, on to the next change.

Getting Stronger

I am getting stronger everyday! I am having more good days in a week than bad days!
Those are all great things, but ......
I need to remind myself everyday to be patient.
Taking one day at a time, and being patient with myself has been one of the biggest lessons I have learned through this journey. So, being the type A person that I am (bet you could have never guessed that about me!), I want to be back to normal NOW!
If I do too much on one day, the neuropathy usually strikes with a vengeance the next day. I have to learn to pace myself and be okay with not accomplishing everything.

Here's the thing. Even though someone is done with treatment, they say it takes the same amount of time after treatment that they were in treatment to start to feel normal again. So, for me, that is around 6 months. I was in treatment for 6 months and I can look forward 6 months and gauge about the time I'll START feeling normal.
Even though I may look good, and feel good one day, I may be down the next, or extra tired, or have to say no to something I have done in the past.

One thing I do know, my cancer was not genetic. It does however have a high probability of re-occurrence. So, I have been doing a lot of reading about environmental causes of Breast Cancer. There are major changes coming to this lady. I'll write about them in my next posts.
Thanks for all of the kind words and gestures!

An Emotional Day

This is an emotional day for sure. I have my last radiation treatment. It is extremely emotional because I have been at this for a little over 6 months.
Now the next part of my journey can begin. The journey that involves many appointments and scans. Waiting for results of scans, and most importantly getting my life back.
This is now MY time, not cancers time. Time for me to begin to strengthen myself physically, emotionally, and spiritually.
There is a lot coming up in my life, but I will concentrate on ME. I have to. I'm no good to anyone else if I'm not strong.

I will continue to write on this blog because the journey is by no means complete. I will also need it to help me on the rest of the journey.
So, surgery, done. Chemo, done. Radiation, done. Next step....... getting myself back.

quick update

Here is a quick update:
1. After today, I have 9 radiation treatments left!
2. I had my port flushed yesterday, and needed to talk to them about the neuropathy. They doubled my meds in hope it goes away.
3. The doctor is glad they stopped chemo early
4. Please pray that the neuropathy is temporary and not permanent. I need my hands especially in order to play piano. I would like my feet back too.

Taking the bad with the good

These days, I am learning to take the bad with the good. I'm feeling pretty good for a few days, then BAM!, I feel not so good. Going into the weekend I felt pretty good. Not too sore, the neuropathy was letting me do things and then this weekend was awful. I am REALLY sore from the boost radiations, and my neuropathy is in full swing. I haven't been able to sleep for more than 2 hours at a time. I'm woken up by pain. My hands and feet are in constant pain and swollen.
I hope you don't feel like I'm complaining, I'm just documenting how I feel. In the grand scheme of things, I'll take this over the constant flu-like feeling I had with chemo! Only 12 more to go!

8th Grade Recogntion

If you saw my post this morning, then you already know that I was able to go to 8th grade recognition last night. I presented my awards and I was able to speak to the audience.

As I have been walking this journey, I began to realize the things I have learned and also realized that these things are applicable to anyone facing a new journey(much like the 8th grade getting ready to go to high school).
I wanted to highlight these 5 things:

1. Have a plan

2. Be prepared

3. Perseverance

4. Let others help you

5. Help others

Here is an excerpt:


Let people help you.

I was completely overwhelmed at the people who wanted to help me in any way they could. My friends, my family, the people here at Pioneer, people I didn’t know, and you.

Good people surround me. People who care about me. You need to do the same. Surround yourself with friends who care about you, and care that you want to do the very best you can. I do know that the same faculty and staff here at pioneer that have surrounded me through my journey will surround you as well. They are good people and want you to do your very best.

Help others.

It gives you a good perspective on where you are in this big world and where you fit in. My first day at chemotherapy, I sat in the waiting room with my dad. As I watched the people coming in for chemo or to see the doctor, I noticed this little old lady come in in a wheelchair. She had been brought by a van, and had no one with her. The van driver wheeled her in, up to the counter and said he would see her later when he came back to pick her up. I watched this lady as she signed in, and then began looking at a basket of hats on the counter. These hats were knitted by someone and were put there for anyone to take. She looked through the hats telling the lady at the desk that she would love a new hat to wear to cover her baldhead, as it was very cold. The lady at the desk smiled and told her to take as many as she liked. The nurse soon came and took her back to start her treatment. About 5 minutes later, I went back to start my first treatment with my dad there. I asked the nurse if a lot of people come by themselves, she said sadly, yes. I asked her what things might help people to ease their time at chemo. She gave me a list of things, and the chemo care bag project was born. See, I had received all of the things that the nurse described already from my friends. When people asked me what they could do, I told them, I need things for the chemo bags.

Doing this project made me realize how much I have. I have someone who goes to treatment with me every time I go. I have the things to care and comfort me while in treatment. So, it was time to give to others.

As of today, over 300 chemo bags have gone to the treatment centers and over 1700.00 have been raised. That money will go to things like gas cards to help people who have daily treatment pay for gas.

All of this was possible largely because of this community. Many of you made me cards, but also made cards for those bags. I have received notes back from people who have received those bags and read those notes and were deeply touched.

Keep up that good work. In High School seek out opportunities to help others.



Lastly, You all have the potential to do great things, if you want to. Take the opportunity to start right now. Tonight. Push hard through these last weeks of middle school. Prepare yourself over the summer for going to high school. When you walk in the door on the first day of your freshman year, it’s a new beginning, a fresh start. Get involved in your education, be an advocate for yourself. Set a goal, and work to achieve it. If you struggle with making those goals or struggle with how to achieve those goals, ask a trusted adult to help you. We have had students here at Pioneer go to Ivy League schools, go to 2 year and 4 year schools on full scholarships, go into the military and serve our country proudly, go from High School directly into the workforce, and even graduate from a 2 year college program and high school at the same time. Whichever path you choose, choose it with purpose and become productive members of society. That journey starts now. You are not too young. You proved that to me by your outpouring of kindness to me. You have it in you.

I am so proud of all of you, and I know that four years from now, you will be in this same auditorium preparing for your high school graduation as a class that has accomplished not only a lot academically, but as a class who is ready to embrace the challenges of this world with a heart for others.



So remember, Have a plan, be prepared, persevere through the tough times, let people help you, and help others.

Half way!

I am half way through radiation! In general, I'm feeling stronger everyday. I do sometimes over-do it though because I am feeling so good. I played piano a little to much yesterday, and paid for it with swollen, throbbing hands last night. I'll get it figured out.
As far as treatment is concerned, my skin has been tolerating the radiation pretty well. The doctors are happy with how the skin looks. They asked me what I was putting on my skin. I told them a product my sister-in-law(Thanks Ali!) sent me called "My Girls". Its specifically for breast cancer radiation treatments. I recommend it highly! I'm just starting to show some redness and beginning to get sore, but I'M HALF WAY! In the grand scheme of things that I went through with Chemo, this I can handle!

14 down and 21 to go?

I had my 14th radiation treatment today. I have 21 to go or so. It should be 35 or 36 total, but the dr. can decide to do more after that if he thinks it's needed. So, I keep going until he tells me I'm done. I'm getting a whole lot better at this one day at a time thing. I've had to.

Yesterday, the scanner broke 20 minutes before my time in the scanner. They called the technician and said they would call me when and if it was up and running. They called and I went in at 1:10 (my original time was 10:50). The radiation technicians were apologetic. I told them it wasn't their fault, they didn't break the scanner. They said quite a few people were upset at them because their day was upheaved. In the grand scheme of things I've been through, a scanner going down is not a big deal. I figured if through 35 treatments it only goes down once, that will be amazing!

I also got to see Nate this last weekend. On Saturday morning, I got in the backseat of my parents car with my pillow and we went to Connecticut. It was great to see him, but it made me miss him terribly. We spent a lot of time at the hotel and had a nice drive around the area. We met my Aunt, Uncle, Cousin and his family and went to a Memorial Day parade that was 2 hours long! We also had dinner with them that night. It was great to catch up! I slept really well that night. I also met Nate's bosses. They love him and would love to keep him forever. At least they have him for the year as he just signed a one year contract with them as Senior Resident Artist.

So, I just keep plugging away one day at a time, and am doing really well.

redness setting in and a moment I cherish

This morning I woke up a little uncomfortable. I'm starting to get red where the radiation is targeted. Luckily I have some awesome radiation cream my sister-in-law sent me especially for breast cancer radiation patients.
So, I think that is the last of the things that could crop up as far as treatment is concerned. Other than that and the fatigue, I'm doing alright.

I had a little moment last night as I watched the All-Choral concert. My colleagues are the best! They have taken my absence, pulled together(along with my amazing sub) and kept everything going. They played and conducted my group and made it look effortless. My school kids have had to make major adjustments these last 5 months which is difficult at that age. I'm sure things haven't been smooth all of the time, and I'm sure I haven't heard about those bumps on purpose, but I am so incredibly proud of them. I will miss my 8th graders terribly, and am upset I only had the opportunity to work with them 1/2 a year. I will see them at the High School though as I'm over there a bit helping with other extra choral things and the musical. At every choral event involving my kids, they have sent me love and a shout-out. Here's a photo from last night (thanks Kolasny family for the picture!!)

Tedious and Tiring

That's what radiation is, tedious and tiring. I go everyday at the same time. I see the same ladies ahead of me and no one behind me as there is a blank spot right now. I have two protocols in the scanner so that changes everyday. One day the table tilts halfway through and the next day it doesn't. I have figured that out in a week! I watch the screen in the room that gives the numbers of the angle of the scanner and table and soon I'm done. I say my goodbyes, and "see you tomorrow's".

I'm actually amazed at how something so short, tedious, and pain free can cause me to be so tired. However, the medicine I am on for the neuropathy makes me tired too, so I'm not sure how much of my fatigue is radiation and how much is medicine. What I do know is that if I want to get something done, I need to do it in the morning. That is the best time for my hands and feet. So, I get up with Mark and tackle the one or two things on my list of things to get done. It may be unloading the dishwasher, but then I have to wait to load it until later with Mark's help. It may be folding a load of clothes and putting them away. That task takes awhile especially if I have to hang Mark's shirts. Buttoning buttons is difficult for me usually and it takes time. Sometimes it's typing like today. Catching up on emails, and writing this blog.

I have learned that it is okay that I only get one or two things accomplished. I'm not superwoman. I have just went through 6 rounds of chemo with crazy complications, and am still in treatment with radiation. Doing those one or two things is an accomplishment, and I just keep plugging along at my list of things I need to do. When I get too far behind, Mark steps in or my parents step in to help. I also look toward early July when this part of my treatment will be done. Them I move on to the next step.

One day at a time.

Just Plain Tired

I am just plain tired, and its frustrating. I'm not feeling "chemo yucky" anymore now that chemo is over. However, the medication they have me on for the neuropathy and radiation makes me tired. I have radiation everyday Monday-Friday for 7 weeks. With the memorial day and 4th of July holidays, I should finish around July5th! Then I go for scans, get this blasted port out, and work on getting back to myself. I'm thankful I have the summer to do that. I want to be feeling healthy to start the school year in September.
In my planning mind, I have a long list of things I would like to accomplish everyday. Things like, bill paying, laundry, loading the dishwasher. Things that I could do in a day plus go to work. That is where the frustration lies. Most days I can only accomplish one of those easy tasks. Then I'm exhausted or the neuropathy in my hands or feet won't allow me to do the task. I know I have to be patient with myself.
I have seen a post on facebook about the how some people who are going through treatment don't look like they are, but none the less are tired and need rest. It's not laziness, its the side effects of the treatment. Granted, I look like I'm in or have been in treatment as I am just getting some peach fuzz on my head, but I'm the only one within the time frame of my radiation with no hair. The two ladies before me everyday at radiation are being treated for breast cancer but had no chemo. They are just as tired as I am. Both of those ladies are quite a bit older than I am. My doctor said they treated me aggressively as I'm considered young for breast cancer. If I were 20 years older. my treatment would have looked very different.
So my point is that everyone going through treatment is different, and no matter if they "look" like they are going through treatment or not, they may be very tired, they may need help.
I have received a lot of help through my journey. My family has been there to help clean, do laundry, and even type emails when my hands weren't working. Many of you have offered help through kind words, cards, and donating to the chemo bag project.

Speaking of the project, over 300 bags have been created. The money left after those 300 bags is outstanding, so I asked my medical and radiation nurses for suggestions. Gas cards were the biggest request. Like me, many go to radiation or chemo daily and it does add up. If the burden of paying for gas could be lifted, that would help many people. Also, they suggested some of the money go to helping pay co-pays. We are looking into how to do that. One of my nurses has a patient who needs the neulasta so her white counts stay up, but he insurance will not pay for all of it, and she has to pay $800.00 out of pocket if she wants it. There are countless other stories like this woman. So, some of the money will help that cause.
Hearing these stories makes me feel incredibly blessed. Blessed to have good health insurance, a flex card for co-pays, people to drive me to treatments, the ability to pay for gas to do that, and many people surrounding me and encouraging me.

On to Radiation

I saw both my medical and radiation oncologists on Friday. My medical oncologist is putting me on something for the neuropathy in my hands and feet. He also is increasing another med which will help slow my heart rate down. He is sending me for an ekg to check things as my heart has been running over 100 for weeks. If my blood pressure goes up, the heart rate comes down and visa versa.

Then I saw the radiation oncologist. Basically, he wants to do radiation on my whole left side, not just where the lumpectomy was. He is concerned about how fast the tumor grew and is quite happy it didn't get to the lymph nodes but was surprised it hadn't. Therefore, we need to be cautious and do the whole left side. I will have radiation everyday for at least 7 weeks.

After radiation is done, I see the medical oncologist. I will have scans, and if those are clear, we will talk about getting this port out! Then I go on a pill for 5 years.

I am starting to get a little peach fuzz on my head, I can feel it, but not see it unless you look really close. I also have to start walking everyday for little jaunts as my neuropath in my feet can tolerate as well as my heart.

I think I can faintly see the light at the end of the tunnel, but still need a little push to keep going. So , thank you to all of you who like my posts and give me little notes of encouragement. You are the push I need to finish this race.

More Truths

I have been pondering why I was upset when the doctor told me we would need to stop chemo. Don't get me wrong, being done with chemo is great, but I cried. I cried out of relief that this part of the journey was done, but I did cry over frustration too. I'm frustrated I couldn't finish. I think I feel weak as a person. I know that chemo effects people differently but you only hear about the people that do really well, or are super strong. I simply didn't feel that way. Also, for as much as I have learned through this to take one day at a time and not plan so far ahead, my plan was derailed. I knew when I would finish, I knew when radiation would start, I knew when I would start back to school, I knew when my hair would start to grow back. I had a plan to get stronger and when and how to accomplish that. With my set backs and stopping chemo, my plan went out the window and that frustrated me.

With the neuropathy, it takes twice or three times as long to do anything with my hands. Since it is in my feet as well, it is painful to walk most days. My blood pressure and heart rate are slowly getting there, but I still have to be careful. I'll know my counts Friday but I feel like they are rebounding. I still have bad days and they surprise me, so I carefully go over the day before to calculate what or how much I did to see if there is a correlation.

The most frustrating thing is the neuropathy in my hands. Holding a pen and writing is excruciating. I haven't been able to play piano in months, and typing is ok, but after I type for awhile I have to rest.

I have two appointments this Friday which would have been my last chemo. I see the medical and radiation oncologists. I'll know more then.

Please keep me in your thoughts and prayers as Paige graduates from Roberts Wesleyan this weekend. I want to feel my best so I can enjoy celebrating this wonderful day with her. I walked across that same stage 24 years ago and can't wait to see my baby do the same.

Round #7

Well, normally I would be sitting in the doctor's office receiving round 7 and blogging. I am not, I am at home. I went to the doctor's office this morning thinking I would be doing round 7. My blood pressure and heart rates have been crazy all week. My blood pressure was low with a very high heart rate, my blood pressure has been normal with a better heart rate, and my blood pressure has been high with a high heart rate. Also, the neuropathy in my hands and feet are getting worse. Along with a very low white count. The doctor and I had a discussion and it was decided that the negatives of chemo are now outweighing the positives of chemo, so I have to be done. He said he doesn't feel comfortable doing the last two rounds as it could give me permanent damage to my hands and feet. He said he remembered I play piano and wants to make sure I still can. Also, my white counts didn't really rebound and he doesn't want to give me neulasta because of the bone pain. And the heart rate /blood pressure issue could be a real problem.

So, I still have to stay clear of people these next two weeks who may be sick because of my white counts. I see him in two weeks for blood work. I see the radiation oncologist in two weeks to get started with radiation. They figure 6-8 weeks everyday. My oncologist talked to my general physician and they are changing some of my regular meds and watching this blood pressure and heart rate thing as well as the neuropathy.

I have mixed emotions. I am thrilled to be done with chemo. I know I won't be bouncing back very quick. I know I have 6-8 weeks of radiation to get through. I'm a little nervous that I didn't finish the chemo rounds. So, it looks like the chemo portion of this journey is closing, and I'm on to the next.

I'm still really tired(I will be for awhile), and we have some hurdles to get over, so I rest.

been awhile

Well, I made it through the 6th treatment with no hives! The only reaction to the drug is general "chemo yuckiness" which feels like having the flu, and no feeling in my fingertips and toes. I'll take it over hives, trouble breathing and a hospital stay. I'm not getting the neulasta so I have to be careful not to be exposed to sickness because the neulasta helps with my immunity. Other than that, I am hanging in there. Being tired all the time is getting very old. I have treatment 7 this Friday.

Round 6

So today I am sitting here starting Round 6. The doctor had me come in as the first patient so that they could get started. After going over what happened the last time and my hospital stay, the doctor told me that only 1% of patients have the reaction I did as late as I did. So, here's the plan.

I am currently being loaded up on steroids and benadryl ( I actually started oral steroids yesterday and will continue those for a few days). Then after that, they will start the Taxol VERY SLOW for the first hour, if I do alright, then they will turn it up a bit and so on every hour until it's gone as long as there is no problem. You have to remember though, I had the reaction 27 hours later. I have to stay at home so I'm close to the hospital this weekend.

Also, because of the reaction and the craziness of my blood work, He is putting me on potassium pills, and I will have to stay away from crowds and have to be careful not to come in contact with anyone sick or who might be a carrier. He was glad I haven't been teaching because with no Neulasta for my counts, I need to be extra careful.

If I have a reaction this time, my rounds may possibly be over. They hope they can complete them, but we have to see.

On a positive note from my last round, there was a 5-12 choral concert this past Wednesday. My chorus performed and they were great! The choruses dedicated the concert to me, and as I watched via the live feed, they waved at me and gave me a message of love. My principal texted me near the end, and let the kids and audience know that I was watching! I miss them so much. Seeing them gave me the courage to try this round and finish this race so I can be with them again.

What's next

So, I finally heard from my doctor today. He wanted to know how long it took before the hives were totally gone and how I was feeling. I told him they didn't go completely away for a week and I was feeling better everyday. After consulting with the other oncologists in the practice, they have decided to go ahead with treatment on Friday(provided my counts are good). I will start steroids tomorrow, they will give me a lower dose of the med over a longer period of time. It's a desensitizing protocol. I have full confidence in my medical team but would lying if I said I wasn't hesitant. Having the reaction I did was scary and I don't want that to happen again. So, I prepare for Friday. Prayers and good thoughts please.

A case of the "why me"'s

This week has been really hard. Hard enough for me to whisper "why me"? Rounds 5-8 should have been easier. That's what everyone said. Taxol was the easier drug to deal with. It was until 27 hours later. Only I would have a severe allergic reaction to it. So now I fight to clear that chemical from my system and see what they are going to do next week.

So, I don't know why me, I try to be patient and take care of myself. I hope I catch a break soon.

My Easter

I can now let you all know that I wished you a Happy Easter from the hospital. I was doing fine with the new drug until about 6pm Saturday evening. I began getting itchy, broke out in hives and had trouble breathing. A trip to the emergency room put me in the hospital overnight. It was a reaction to the new chemo drug. By about 3am, I finally went to sleep with the hives finally decreasing.

Next up was my blood work. The dr. saw me Sunday morning and said my potassium was coming close to dangerously low so they were going to give me potassium, a lot of fluids, draw more blood at 2pm and probably send me home.

At 2pm my blood was drawn only to indicate that my potassium was good(yea!), but my hemoglobin had dropped significantly(oh the perils of chemo). So, I'm staying another night to get a blood transfusion.

Prayers that everything goes smoothly and I'm out of here tomorrow. I still can rejoice in this beautiful Easter Day though and am very grateful for the wonderful hospital staff who are taking care of me!

Opportunities

So far, so good with this round. Granted its only been 24 hours, but I'm feeling pretty good, just tired. Here's hoping everything stays status quo. This entry is titled opportunities, because I realized I had two amazing opportunities to tell my story this week to women I don't know very well or at all.

The first was actually at the vets office when Mark and I stopped there for Jaeger our dog. One of the vet techs knows me because I have taught her children. She had asked how I was doing and began asking me questions. As I was talking, other employees began to gather to listen as well as another lady who had her dog there. I basically told them it was my regular annual mammogram that caught the tumor and even though it was hard to detect(due to my dense breast tissue), the persistence of the doctor to run more tests to confirm what he thought he saw. We talked about my other tests, my surgery, why I chose the type of surgery I did, and my treatment.

My second opportunity came after treatment yesterday. It was 2pm when I got done. I was feeling good and I was hungry so my dad and I decided to get a quick bite to eat at a diner close by the treatment center. It's pretty obvious I am probably in treatment because I have no hair. I ordered a chicken souvlaki and some greek potatoes. I figured I could taste those. The salad I could but not the potatoes. When the waitress came back she asked me if there was something with the potatoes. I said no, I just couldn't taste them because I was in chemo and I have trouble tasting things. She asked if I went for treatment next door and I said yes. She asked what type of cancer I had and after I told her, she said she had recently had a breast cancer scare, but the lump was benign. She wished they would take it out because it bothered her. She asked a lot of questions, and I answered them all. She told me she thought it was wonderful how honest I was about my situation and willing to talk about it.

The point I made with all of those ladies is to go get your annual mammogram. I know it's uncomfortable and can be scary. Take a friend with you, ask me to go, just go. It's something I've gotten used to lately. I will be scanned often now, so if you have questions about any of the procedures I've had, just ask me. I'll be honest with you, I have thus far!

Round 5

So, today I am sitting here getting round 5 of chemo. It'll take at least 4 hours. I have new drugs today for these rounds. The doctor said he won't give me the neulasta which is for my blood cell count because I have had a lot of trouble with that drug(the infamous bone pain).  I told him he was my favorite person today!!! There is an 80% chance I will do fine, and if not, he'll simply do the last three rounds in 3 week intervals. So I hope for no need to do that. The only issue with my blood work is anemia. My counts are a little low.

Now off of the medical stuff and on to me. As most of you know I had a bad round. I actually asked Mark if he though I was being a baby about it, and he said no. I actually asked the nurse too. She said that people react differently to chemo but I had a hard dose of chemo so what I experienced these last two weeks did not surprise her.

Also, I figured out what I have been dealing with mentally and emotionally. It's the whole control issue. I like to plan things, and I can't. That is what I am struggling with. If you have any suggestions on how to "make game-time decision" as Marks puts it, I would love to hear from you!

I'll give an update on how I feel later this weekend or week!

Happy Easter!

A little set back

Sorry I haven't blogged in awhile. After round four I did have significant bone pain which kept me down until Wednesday. My parents are now home from Florida so Mark took me there Monday and Tuesday. I got through the bone pain and was looking forward to the weekend when all of a sudden I got very sick Thursday night. I got a little dehydrated and thing spiraled downward quickly. This kept me back in bed until Sunday when I moved from the bed to the couch. This morning I am weak, but doing better. I just need strength in the next for days to face round five on Friday. Prayers and thoughts please!

Round 4

I just got home from round 4. I'm half way! The dr. And I talked about the bone pain I had last round. He said I had two choices. He could not give me the neulasta that causes it( but it also helps my blood counts stay up), but that would most likely delay treatment in two weeks, or... We could do the neulasta to keep the counts up and try a different Med to get me through the bone pain. I chose the latter. I don't want to delay. The next round I change to a different chemo drug and may not need the neulasta if my counts are good. So... this weekend I fight, and I fight hard! Please keep the good thoughts and prayers coming!

It's been awhile

sorry I haven't blogged in awhile. This last round of chemo kicked my butt. I'm really trying to focus on the positive, but it's been rough. The nurses said rounds 3 and 4 would be the toughest and they were right! I was in rough shape for about 5 days. Round 4 is Friday, so please send good thoughts and prayers. I always pray to wake up on chemo days feeling good so that I have the courage to do another round.
I have had a good weekend though. I was able to see Pioneer's musical. I came in right as the show started and they put me in the light and sound booth in a comfy chair. The kids were awesome! The show was dedicated to me, and the kids wore pink ribbons on their first costumes. It touched my heart. I miss school, teaching, and my Pioneer family, but it's best for me to not be there until chemo is over so that I don't get sick.
There will be another chemo bag update soon as we are getting ready to do more bags!
Thank you to everyone who has sent cards, messages, gifts, good thoughts, prayers and supported the chemo bag project! You are definitely part of my healing process!

Good days and Bad days

The good days and bad days eventually even out. Today was a good day, and a sunny day which made it extra special. I like to get out even if only for a couple of hours on good days. Also, the chemo bag project is taking on a life of its own with more people wanting to help. That makes for good days for me as well. Focusing on this project keeps me from dwelling on my own treatment which keeps me positive. Not that I am always positive mind you, those bad days can be really bad. Most of the time they happen in the four or five days following chemo, but can creep up on me on odd days too.

I'm flattered by the compliments that I have received pertaining to my strength and positivity, and I do strive to keep as positive as possible. Saturday was a bad day that just crept up on me. I had slept on my port wrong, and had a headache all day. That launched me into a slight pity party for myself as I cried about wanting to have my hair back. Mark let me cry for a little awhile, held me, and said in a loving voice"You know your hair won't come back for awhile, but I love you, and you are beautiful." I pulled myself out of my rut, and Sunday was a good day.

So, strive for for good days everyone, know that there will be bad days, and encourage everyone you meet in a loving matter so their bad day may turn around.

Chemo bag update

The response has been incredible! And there are still things coming in! As of last night, there are 268 care bags filled and ready to be delivered. With the money that has been donated, we are going to shop to fill in a few more bags and buy $20.00 gas cards for the nurses to give people that they know need them to help ease the burden of driving loved ones to appointments and chemo. I have cried with happiness everyday as I looked at the bags ready to go and the groups that were involved. Multiple churches, my school district, boy scout and girl scout troops, and friends and family all contributed. All I can humbly say is THANK YOU!

No more hair

Day 13 and my hair started coming out in massive amounts. Right on schedule. Since I have chemo tomorrow and didn't want to deal with the regular side effects and my hair, I had it shaved off this afternoon. I didn't really cry at all. It's hair. It'll grow back. A lock of it is in a glass ornament and Paige is going to paint a breast cancer ribbon and the date on it for me. The first thing I did was face time my parents(who are in Florida) to thank them for giving me such a nice shaped head! I can totally rock this.

I will have an update on the chemo care bags next week. The final things are coming in and I am so excited at how many people we will be able to bless.
Think of me tomorrow as I have my second chemo treatment.

One week truths

here are my blatant truths about the first week.
1. I never know how I'm going to feel day by day or even hour by hour
2. I have had a headache everyday
3. Taking a shower exhausts me
4. My port is being a pain in the neck(literally)
5. I feel like a big baby most days
6. I have to use plastic utensils because I very thing tastes like metal
7. I ordered a wig
8. I ordered some hats and pre tied scarves
9. I managed the bone pain part pretty well
10. I am thankful for everyone who has been helping me

1 down 7 to go

Well, I had my first treatment on Friday. It almost didn't happen. Normally my treatments would be in the Orchard Park office, but they were moving into new facilities that day and I went to Williamsville instead. When I got there, they had no orders and no chemo drugs for me. But... they were wonderful, called the doctor, he sent orders, the pharmacy mixed the drugs and sent them and I started. Friday evening I felt yucky, a little nauseous and a wicked headache. They gave me things for those and I slept really well. Saturday morning I was back up to Williamsville for a shot to boost my blood counts. The rest of Saturday I basically felt like I was either hungover or had vertigo. I slept all day and night. Today, I got up, showered, went to breakfast and am home writing this and then a nap. I'm praying the bone pain from the shot won't happen. I have tomorrow off from school as I planned treatments on Fridays with the plan to take Friday and Monday off. Hopefully my plan will work, but I'm just listening to my body. If I feel good tomorrow, I'm going to get a wig and some hats as the nurses said I will lose my hair by the next treatment or very soon thereafter. Thank you for your continued support. I feel the prayers and good thoughts and it makes this a little more tolerable.

Update

Well, the last test came in. I have a medium to high probability that the cancer could return.....so.....I start chemo next week. I have a medi port put in on Thursday and start chemo on Friday. I will go every other week for 16 weeks. 

What I don't know:
1. How I will feel after treatments
2. If I will be able to stay on the treatment course
3. If I'll be able to stay working the schedule I want to.

The unknown is the part that bothers me the most so..... let's get on to ......


What I do know:
1. I will lose my hair!
2. There's wifi in the chemo room!
3. I will try to bless those around me having chemo too!

Speaking of blessing those around me, I am launching a project. My physicians are extremely optimistic as they have all stated "Medically things look good, and you have an amazing support system." I do have an amazing support system, and I would like to help those that do not. I am doing a chemo care package project. They will be zippered bags that will include items such as chapstick, lotion, peppermints, lifesavers, notes of encouragement and notepads and pens. I am also collecting lap blankets, hats, warm socks, and water bottles. These items will be distributed to chemo patients who do not have the type of support systems I do in hopes that we can make someones treatment experience a little easier. If you feel led to donate any of the above items, or money to buy these items I would truly appreciate it. You can send things to me, or take them to any of the Pioneer School buildings, or drop them off at the Springville First Presbyterian church. If you live too far away from me, donate to a cancer treatment center near you. Donate money, blankets or things, or your time to visit with someone who has no one to help them through the treatment process. 


Facebook message me if you have any questions.

Thank you so much for your continued prayers, thoughts, and support!

Frustrated

Sorry for such a downer post ahead of time, but I am frustrated. I'm still holding on to the remnants of this cold, I'm waiting for that last test result, I'm going through more tests in preparation for starting chemo, and to top it all off, I received a letter from the insurance company that my initial ultrasound in October(after the Dr. thought he saw something on the mammogram) is not going to be paid because it was deemed medically unnecessary! I know that will work itself out because as soon as the insurance company sees that they took a 3.5cm.  invasive cancerous tumor out of me 2 months later.....

Anyway, according to everything I read, I'm suppose to decrease my stress level. Right now, that is hard. I have my echocardiogram on Monday, blood work sometime this week, they have scheduled the mediport for the 28th and chemo starting the 29th. I'm so discombobulated right now, I don't know where to put my energies. I don't want to sit idle because it makes me think too much. Maybe I'll clean my house. And... I ended up having to take a leave from the university. They only allow 3 weeks in between classes, so I would have had to start my dissertation on Monday. I really wanted to know my treatment plan before I started, so I took a leave until I have the treatment plan, begin it, and see how I do.

Please send prayers and good thoughts my way to decrease my stress level.

Thanks!

Learning to be a patient and being patient

I saw my medical oncologist for the first time today. He was amazing as was all of the staff I met. He is anticipating chemotherapy, but wants to run one last test on the tumor. It is an oncotype dx test. Basically this will help determine the probability of my cancer coming back. If the probability is low, I may not have to have chemo. As we are awaiting the results of the test, he is making preparations for me to have chemo. That is so if the test comes back with higher probability I'll be ready to go. So I have to be patient again while waiting for the test results, and I have to start being a patient as I prepare for the chemo treatments I may have. So, I have to have an echocardiogram, and am being scheduled for a mediport. My treatment will last 4 months, and then I will have radiation. If the test indicates chemo needs to be done, details will be forthcoming as to the particulars of the treatment schedule.

So I wait, and prepare for a couple of possible scenarios. Thanks for all of your kind words and prayers.

Appointments are my life now

Well, I just saw my surgeon for my post op visit. He is thrilled with how everything went and looks, so I am on to the next phase. I can't say enough about my surgeon and all of the people in his office, they set everything up for me. So, appointments are my life now. I have four appointments with four different doctors all made as I left the office today. I'm going to need to start a calendar just for my cancer! I have an appointment with my surgeon in a few months, an appointment with the radiologist for scans, an appointment with the medical oncologist, and an appointment with the radiation oncologist. Whew! I'm tired already and haven't even started treatment. I just need to get the tail end of this cold gone so I can start treatment with no hold ups.
On a side note, the doctor did tell me that he sees nothing but a positive outcome for me not only because medically things look good, but that I have a great attitude, and obviously a lot of great support systems in place. So, THANK YOU! Everyone who reads this blog is my support system and I cannot thank you enough. It does make me sad for the people that do not have this kind of support system, so I am going to be thinking about ways we can change that. I'll keep you updated after the first appointment!