August?

Chemo....the middle of August?? Are you kidding me!?

Venting!!

I "strongly dislike" Ball Memorial Hospital, and I.U. Health. In particular, the screwed up billing department. I made a lot of effort to pay off small bills and catch things up or pay ahead before I went off work.

Today I received a collection notice, for a bill I have not received. I called to inquire about it. It seems that they have saved up a number of small bills and instead of mailing them to me, waited until they had a nice big combined number, and sent them directly to collections. WTF!?!?!  Of course, they claimed they mailed them. Of course they did!

Guess what baby, there's no money now. Take a number and step to the back of the line.

Small Progress

I had my weekly visit with the plastic surgeon yesterday. Until my body stops producing it, I have to go weekly and have the excess fluid drained from my back. The goal is to have a smaller number each week. I went from 42 cc last week to 62 cc this week. Bummer. She says not to worry because it's due to me using my right arm and shoulder more, now that the pain is less. Well, that's easy for her to say, she's not the one getting literally stabbed in the back every week! lol  The good news is that there is no longer any dying tissue. That has been an issue, and I've been hoping to get past that point. That's somewhat of a relief. I'm still leery of trusting that. It doesn't look much different to me. She also said that when she does the second surgery, she would remove some of the scar tissue. It reminded me of something I heard while sitting in the waiting room earlier. I heard the nurse's side of a phone conversation with a patient who was worried about scarring. I was thinking, that is a very big difference between those who have plastic surgery for cosmetic reasons, and those who have it as part of a life saving procedure. The scars really aren't that important to me. As long as the cancer is gone, I can deal with the scars.

So tomorrow I go to visit Dr. Schmidt, my breast cancer doctor. This will be my first visit to him since my surgery. We'll see how that goes.

My pet peeve of the day, (yes, I always have one), is fake people. You know what I'm talking about. The ones who try to act caring, even though they really aren't. I believe the old saying, "What goes around comes around".

Unsociable

I haven't posted for a while. I've just been feeling unsociable lately. It happens. I guess I'm kinda stuck in "hermit syndrome" this week. I haven't payed much attention to facebook, or answered emails. I haven't contacted coworkers, friends, or family, not even my kids.

I'm a little frustrated with my slow recovery. I'm frustrated with having to ask for people's help. I'm frustrated with doctors and communications and scheduling, or lack thereof.

Thanks for the Blood Drive

Ouch! I got those drainage tubes removed last week. Now, for several weeks, I'll have to keep returning weekly to the Dr. to have the area of surgery in my right shoulder drained. That hurt a lot, and honestly, I haven't done much but sleep all day. It's still better than having the drains, so I'll just deal with it.

I haven't been on the pc much. It still hurts a lot to use use my right arm very much. It gets a little stronger each day.

I did get a couple of nice surprises today. I thought my paycheck two weeks ago would be the last one until my short term disability kicks in next month. I found out today that I do have a partial check coming tomorrow. I also received this today. Thank you!!  I'm honored to be a part of this, and to share it with Kathy and Nina. I don't really know Kathy, but Nina has been a great support to me. I have a rare blood type, and used to donate all the time, when I still could. I miss being able to help in that way.

"What Can I Do To Help?"

I hear that a lot. I've also said it to others who are sick. I wanted to share some ideas on that subject this morning. I am not specifically asking for help with these things, but sharing ideas that anyone can do to help someone they love in this situation. There are so many small things that we often don't think about, that can make a big difference.

The last time I fought this battle, I drove myself crazy trying to send thank yous and acknowledge all the help I received. This time, I asked for help. I asked someone to pick up some stamps. I asked someone else for a few thank you cards, and my daughter is helping to get them written and sent out.

Often, in situations like mine, there are some pretty strict lifting and reaching restrictions. For instance, I cannot lift more than 5 pounds. That has been a challenge. I've needed help watering my plants. I've relocated a lot of often used items in my kitchen to a level I can reach. I've had to switch to 1/2 gallon jugs of milk or pitchers, so I can lift them alone. Some heavier grocery items may need to be picked up by someone else, like bottled water or cat food.

If your loved one has pets, that can create it's own set of challenges. Walking larger dogs can be painful if they tend to pull on the lead. Bags of food or litter may be too heavy to carry. You can help by taking a turn at walking the dog, refilling a water dish, or helping with the litter box. Things that can be scooped should be put in an easy to reach place.

Driving restrictions are another inconvenience. Calling ahead to see if you can pick something up before visiting can be helpful, or offering to take your loved one to the store.

One thing we often think of in trying to help someone recuperate is food. There are certain things that should be considered. I had someone bring a nice bowl of food, but it was too big for me to lift out of the refrigerator. Small bowls are a better idea. Chemo in particular, often causes thrush in the mouth. Thrush can make your mouth very sensitive to spices, even black pepper. Fresh fruits and vegetables are always a good idea. Tomatoes can also be hard to eat while on chemo, but the yellow tomatoes have less acid and may be easier to eat. Dehydration is always a problem while having chemo treatments, so melon, especially water melon is very good. Again, remember those lifting limitations.

The tendency is to try to get your loved one to eat healthy. It's so hard to explain the nausea to someone who has never been through it. Any food is better than no food. Just accept the weird things they may ask for. Extra nutrition can always come from supplements like Boost or Ensure.

There are so many small things that can mean a lot, like helping someone with their hair, refilling a bird feeder, or weeding a small flower garden.

Both chemo and radiation can be very hard on the skin. Lotions are always helpful, even to men. We sometimes don't think about that. There are so many lotions made specifically for men now. Radiation can cause severe burns, and a nice big aloe plant on hand can be very helpful.

In an effort to help our loved ones, we sometimes forget how fragile they can be at times like these. Immune systems are weaker than ever. My daughter put a box of masks and a bottle of hand sanitizer at my front and back door the last time I went through chemo.

Last but not least, to my fellow warriors, is to let your loved ones help you.

How to Post a Comment

I've had a few people tell me they would like to post a comment, but had some trouble. I got some help from my daughter, and hope this will make it easier.

Go to a specific post, and look for the "Comment as" drop down box. Choose "Anonymous". Type your comment.

 

 Click "Publish". You will need to enter the words in the box to prove you're not a robot, then click "Publish" again.

Good Words

My Own Choices

Good morning all. It's getting a little better each day. It's a beautiful morning. It's raining, but it's beautiful. Our gardens were thirsty. I can still sit on my nice quiet porch and watch the gentle rain.

I slept until 9:30 this morning. That's a first. I talked to the patient navigator at St. John's hospital this morning. That's where I prefer to do my chemo treatments. They are still in the St. Vincent network, but closer to home. I don't mind going to Indy to see my Breast Care doctor. I dearly love Dr. Schmidt. It's well worth the trip. The hematology doctor, not so much. It's very important that you like your doctors, and feel they are on your side. I found the hematology doctor to be very condescending the last time around. He really didn't have time to talk to me. I know he sees a lot of patients, but he forgets what he had discussed with you and what he hasn't. I took someone with me on every trip last time. (Remember, Carolyn taught me, the more ears the better.) When I would ask questions, he would snap at me, "We talked about that". Actually, no we didn't. I have witnesses. And even if we had, chemo causes a fog we all call "chemo brain".  If I have a question, please have enough respect to take time to answer it. I got to the point that I dreaded seeing the doctor more than the treatment itself.

For that reason, I'm choosing another location and hematologist. I'm ready. Let's get this chemo started and keep moving.

Taking advatage of what's available

What a relief! I finally have the last drainage tube out. That feels so much better. The day had a hidden blessing. I thought I had an appointment with the other surgeon tomorrow, to have the stitches taken out. I mentioned that today, and she said "what stitches? Those are all my stitches and they will dissolve."

It seems whoever called from the other Dr. last week and told me I needed to come in tomorrow at 11 was mistaken. It turns out, I do not have an appointment after all, and do not need one.

It's not been easy, but it's what I need to do to survive. A lot of us face some hard times in order to survive. I have a dear friend who knows her cancer is inoperable, but still faces everyday with bravery and determination. I admire her spirit. Some recent issues with another family member have caused me to do a lot of thinking in the last 48 hours. I'm frustrated today with people who are so resistant to medical treatments available to them.

I remember when I was diagnosed the first time. My dear friend Carolyn is a survivor. She has given me some good advise over the past few years. She went with us to our first visit with the Dr. She brought everyone a notebook. She told us, the information can be overwhelming. Everyone in the room will hear something different, and interpret it different. We all took our own notes and later compared them. She was so right. All 4 of us had different notes. If there is one thing I can share with others that will stick with them, this is it. Everyone's cancer is different, but this practice fits everyone. The news itself, and the details of procedures needed can be traumatizing. I believe this doesn't just pertain to cancer, but many other serious health conditions. The more ears, the better.

Another thing I remember from that day, are Dr. Schmidt's words. He told us, medical procedures now advance at a much higher rate than in past decades. For instance, from the 1950s to the 1960s, some advances were made. Now, from the time Carolyn fought cancer, until 1 or 2 years later when my fight began, the advances made could be compared to what took a decade before. This is true for all fields of medicine. With that said, I'm back to the subject of people being resistant to medical procedures.

My grandma Ruth died of kidney cancer in 1991. I didn't know until I began chemo, that she had refused chemo treatments, because she did not want to lose her hair. I have to be honest, I was angry when I learned that. She was a beautician, and had shelves of wigs, wigs she wore all the time. That seems like such a senseless, selfish choice. I know someone else who almost resisted treatment for that same reason last year, a 76 year old man. How vain is that? How many men that age still have a full head of hair? Is that worth dying for? My choice was NO. A similar excuse heard last year, from that same man, was that he didn't have time to be bothered with chemo, because it would prevent him from going to the lakes every weekend. Thankfully, he finally decided to fight, and is now cancer free. I know a woman who has 2 daughters who have both had cancer, one is still fighting it, and refuses to go in for mammograms. Her insurance would pay 100%, but she just doesn't want to be bothered with it.

That family member I mentioned earlier faces a big decision. He has suffered full cardiac arrest, three times now. Twice last year, and once this week. Last year, they either didn't understand what the doctors were telling them, or chose to ignore it. Now that it has happened again, he is refusing the pacemaker because of something he saw his dad go through 30 years ago. The doctors have tried to explain to him how much heart medicine has advanced in 30 years. There is also the "lake issue". Having to take time to get a pacemaker will interfere with lake time.

The majority of my morning rant is over. Life threatening conditions sometimes require life changing decisions. Those are personal decisions, made for personal reasons. Last year, when my Daddy decided not to take the second round of chemo, I respected that decision. He had tried, and fought a good fight. It was more important at that time, for him to be comfortable.

I have an amazing support team, but I owe my life to my my medical team. I thank them all for using the skill and knowledge given to them by the Creator, to help those of us who want to be survivors.

Finally, in a completely unrelated note, another battle is being fought this week. Please say an extra prayer for those in beautiful Colorado. I talked to my son last night. He loves Colorado so, and honestly, so do I. I spent a wonderful vacation there last year. Last night, his words ripped at my heart. "I'm so glad you got to come out here last year, before the whole state burns down."  We have other family being threatened by the Royal Gorge fire. They were preparing to evacuate when we last heard from them.

Pain Meds = Weird Dreams

Pain medicine is a great thing, but it can inspire some weird dreams!

A few nights ago, I was trapped inside a Sam's Club. Not just any Sam's Club, but a very scarey, very purple Sam's Club, in Alexandria, Indiana. It was inside an old factory, and you could only advance to one "department" at a time.

This morning's dream was on the lighter side. I spent a big part of yesterday teasing my little sister about her becoming "Nanna". She got some strange summer flu bug or something. So this morning, I dreamed that Nanna Jenny wasn't really sick, she accidentally got high on her poppy seed dressing!  Sorry Jen, but I woke up laughing so hard I cried.

One down, one to go

I'm getting ready to see the surgeon. I can get the first tube out today. I can hardly wait. I've been thinking about this a lot this week. Actually, it's hard not to since they control every move I make.

I think it's just so barbaric. You would think modern medicine could find a better way. I have a pretty high pain tolerance, and an EMT husband to help with the draining and bandaging. I can't image what a struggle this is for a lot of others without those advantages. Thanks to some creative pillow stacking, I did have the best night's sleep yet.

Inner Circle

There is a Cherokee belief that we have 2 names. One, is the name friends, acquaintances, and the rest of the world know us by. The other, our real name, is only known to family and true friends, and closely guarded and protected. It is believed that if our enemies know our name, they can use it to bring curses and bad health upon us. I believe that idea follows through with a lot of other information, including our health itself.

I owe a lot to my loved ones for helping protect that information. I've tried to make my battle a very public one, in the hopes of helping others. However, there are a handful of people I prefer not know the details of my struggles. It helps to protect me from their negative energy. Thank you for helping me protect that. Wado Nvgadawa!

The last few days have been a struggle. I've had some minor complications, that I pray the Creator will help keep minor. I am exhausted, but I still have lots of fighting left to do. Thank you for stopping by and checking on me.     Fight like a Girl

More good news...

I got my pathology report back today. It's more good news. The area they removed was cancer free. That means they got all of in April when they took out the original lump. If the drainage keeps diminishing, I should be able to get the both tubes taken out on Thursday. That will be fantastic! The other healing seems like small stuff compared to these tubes. I HATE them. I want them to go away. That will be a big positive step. Then next Wednesday, they will take my stitches out. Funny, I've had a lot of different surgeries in my life. Getting the stitches out was always a big goal. This time, it seems so secondary.

The hardest part of recovery, is feeling so fragile. That's not a normal thing for me, but I've learned how important it is to just say, No, I can't do that. I know a lot of stubborn people who have battled cancer, and other diseases. I think we sometimes forget, it can be just as important to let those who love us help us. I've been on both sides of that.

Know your limits, delegate, relieve stress, and heal!

Let the healing begin

So I have a lot of catching up to do! But first, I just want to say that mama is doing great! She is very tired, and healing has proven to be hard work, but when she feels good enough, she's been getting up and around & returning phone calls. (Side note on that: if you've been trying to reach her, she's trying... she's still catching up calls to family as she feels like talking.) But I'm impressed. She's one tough lady. That's my mama...inspiring...a symbol of strength and courage. I can't imagine being in her shoes. Now for the catching up... Thursday was post surgery day one. Release day! And of course, she got stuck with a mean nurse. One more reason to will herself into recovery. So, as soon as she could keep some food down, she was on her way home. The nausea came home with her, as should be expected from anyone that has been under a large amount of anesthesia, on pain medicine, and still in extreme pain. Pillows came too. A lot of them. They sent four of them with her, to keep her incisions protected. I can't help but think of shipping fragile items with those little plastic air pillows... Friday was a new day, and one in which I promised to learn how to empty her drains. It was a much harder task than I thought. I remember it from last time she had surgeries. Dad has always taken care of them. The drains themselves, are little flexible bulbs, connected to a tube, that goes inside her body, and curls around, in a spiral, inside the area where she had surgery. She has two of them. One, in the front, and the other in her back. The part of the tube that's inside has holes in it. The suction from the squeezed bulb pulls fluid into the holes and through the tubes. So here is the hard part... to drain them, you have to start right up by the incision, and pinch the tube closed and hold it in place. At the same time, you use your other hand to guide anything in the tube down to the bulb, so you can empty it. The problem is that this process amplifies the suction inside her body. It's extremely painful. That was what got me. The blood, the tubes...okay, I can handle that...but to see how painful it is to empty the drains, it hurt my heart. There's no easy way to do it, no way that is painless, and I think that is something that other people should be aware of. Brace yourself if you ever have this drain, or have to be the person who empties it. Today, I could see that she was exhausted. When I talked to her tonight, I could hear how much pain she was in, in her voice. She hasn't been sleeping well. A few times today, she fell asleep for just a few minutes at a time. (Same yesterday...) She is getting her sleep in broken little bits here and there. She can't get comfortable enough to sleep. Or at least, to sleep well. She's getting sleep, but 30 minutes of sleep at a time will never be equal to a good solid night of sleep. She can only sleep on her left side, but even on her left side, she still has to find something to do with her right arm. It hurts to rest it on her side, but trying to keep it off her surgery sites can lead to tension on them. Sleep is a challenge. I'm impressed with her spirit, and her positive attitude toward this fight. She's even been able to enjoy some time out on the porch since she's been home. Rest and doctors heal the body, but nature has a way of healing the soul, and I know she enjoys spending little bits of time outside. Each day, the nausea is better, and I'm hoping that very soon, her sleep will come easier too. But for now, she's being patient, and coping well. Each day brings signs of healing. Today, her incisions were starting to itch. Her muscle was spasming slightly, adjusting to its new home on her chest. Good signs. Let the healing begin... <3 - Lacy