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.