Thank God

I'm feeling much better today.

Surgery is the morning of July 10th at St Agnes. It's an out patient procedure and I will be fully out of it all. The thing is some surgeons do under a local. Part of me wants to be awake so I know what is going on. Oh well. I may have to get one of you to sit and surgery and take notes.

The next thing I need to do is set up dates for chemo and radiation. The only problem is both the adored chemo oncologist and the impressive but not yet adored radiation oncologist, want to be the second to treat my body. Radiation oncologist says since I am using partial breast radiation (mammosite radiation) I should do radiation as soon as I have healed from surgery. The adored chemo oncologist says we should do chemo first, but that was before partial breast radiation was being discussed. I have a call into the adored chemo oncologist and I figure it will work out easily.

I have set up an appointment with the wonderful gynecologist--she wants me to check in with her after I talked to various oncologists.

I called the therapist's office and used the cancer and depression card to get sympathy. I should hear from him this evening.

I still need to call the regular doctor for a pre-op physical, but will do that soon.

Having a date for surgery takes a weight off my chest. GL's note kicking my butt lets me know I am loved not just by her but also by many others. Life is good and this is just a bump in the road. Life is good.

I Miss the Real Me

That's (above) where I am right now. I"m floating in the middle of this big, open space. The space can be either beautiful and transcendent or overwhelming and empty. Right now I don't know which it is.

I know I'm lucky. I have a treatable cancer. I have family and friends that love and support me. I have wonderful doctors. I know this is just a bump in the road. So why am I so miserable.

I can't bring myself to return calls or e-mails from friends who are reaching out to me. I can't bring my self to exercise even though I know exercise would help me feel better. I can only occasionally bring myself to be more then civil to Al and the boys. The bubbly mom, the goofy mom, the loving mom is gone and I miss her.

I sit and think I don't want to do this again. I don't want to be dependent on nurses, doctors, family and friends. I don't want to lose my hair. I don't want to talk about cancer. I don't want to take my clothes off for everyone and their uncle. I don't want people I barely know touching my body. I don't want to explain to another person why I didn't follow-up on oncologist visits, the gynecologist and mammograms. I don't want to explain to myself why I though ignoring routing medical care could ever be a reasonable option for a mother, a wife or an intelligent woman. .

I don't want to explain to my self why when the radiation technicians (treatment for NHL) of ten years ago, were callous, I wasn't more assertive and I didn't tell them their treatment was unacceptable. I know I can be and have been more assertive this time, but I'm not sure I'll be assertive enough if necessary.

I'm scared because I am trusting my life to a set of doctors many with whom I have no real relationship with. I have done some research on each of the ones I know. I've googled them, I checked their licenses at the Maryland State Licensing site. I asked others about them. All of that helps, but it's not enough. Trust is bigger then fact checking. Trust is built on personal experience. It encompasses more then just the mechanics. It includes, at least for me, a personal connection--whether your personality meshes with the personality of the other person.

I'm not sure I fully trust my surgeon. He is highly recommended. He is kind, caring and takes the time to explain the process to me. He is very skilled. He has a warm generous personality. My problem is that he is a little paternalistic. I have the feeling he wants to protect me--or maybe himself on some of the smaller things and therefore gives me a wait and see answer instead of his best guess. That makes me fell that he is not being completely honest and it makes me harder to trust him fully.

It all comes down to I don't want to go through this any more. It's hard. It's disruptive. It kicks me out of my comfortable life rhythm. It is forcing me to grow or stagnate.

Click

Last night the pieces clicked into place.



This cancer is most likely a result of the radiation I received for non-Hodgkins ten years ago.

The treatment I received was the standard of care at the time.

I had read that breast cancer was a possible side effect of radiation of the mediastinum, but that relationship -- radiation to later cancer-- generally was for younger women.

I wanted the best level of medication to most insure I would live to see my babies grow up.

It makes me wonder what they will find 5 to 10 years down the road. Will they find that the treatment of breast cancer following treatment for non-Hodgkins leads to some other kind of cancer?

That thought makes me feel miserable. Today is a hard day. Even so I don't see many alternatives. I am confident that I will receive the best care available now. I am confident that I will recover.

Life has no guarantees.

Almost at the End of the Road

Picture taken from Gateway files. I am almost at the end of the determining all we need to know about Linell's cancer road.

I have spent the week seeing doctors and taking various medical tests. I am sick of it all. Thank goodness there isn't much left to do.

• Monday I met with my beloved oncologist, he saved my life last time I had cancer, so what's not to love).
• Tuesday the breast rotten MRI
• Wednesday I the stupid echo cardiogram .
• Today was the best day by far because it was a day of almost decisions. Al and I met with a St. Agnes Breast Cancer team; a surgeon, a plastic surgeon, a radiation oncologist, a medical oncologist and who ever is needed. The cancer team gets together early in the morning and discusses the patients they are about to see. Then each doctor meets and talks with the patients individually. After meeting with the patients the doctors get together again and come up with the final recommendations.

During the meeting (probably based on Tuesday's MRI results) a radiologist at St. Agnes re-read my mammogram and found another lump, bringing on another biopsy and now a new wait before the Doctors can make a final decision.

But in any case it looks like a lumpectomy will still work since both lumps are close enough together. Hopefully I will get the final word on Tuesday.

Letting It All Hang Out

A breast MRI is no fun. It's a rather strange position, lying on my stomach with my boobs hanging through two padded holes. The procedure lasted for at least an hour and by the time I was half way through I was hot (the machine gets hotter and hotter as time goes on) and uncomfortable (not being allowed to move makes me really wiggly feeling). I survived.

The funny part is I was listening to music while I lay there. One of the song's was Shania Twain's "Man I feel like a woman" One of the lines is "Man I Feel Like a Woman I`m going out tonight - I`m feeling all right Gonna let it all hang out Wanna make some noise ..." I was lying there letting it all hang out. I fit right in with the song.

Joy

This was going to be my post before I saw the oncologist. I was scared--wondering what he would say, what would be the impact on my life.

My sons give me joy. I tell them that often and I tell myself that daily. When times are hard, when Albert is mouthy, when Ben breaks yet another thing, I comfort myself by reminding myself they give me joy.

I need to hold on to that today. I am seeing the oncologist and will be starting the planning of my treatment and I am angry and scared. I am angry that I have cancer again. I am furious that in reality I have no control over treatment. I want to live. I want to see my boys grow up. I want to see my grandchildren. I want what we all want -- to be a part of my family for a long time.


Now, after seeing him I am feeling much more optimistic. My cancer is aggressive but treatable. The biopsy shows:

• Invasive Ductal Carcinoma, Nottingham (Elston) Grade 3. Grade 3 means aggressive.
• The size is 1.1 cm. That's okay. Not really small, but not huge.
• It is estrogen and progesterone positive. That means that hormone therapy will help keep the cancer from coming back.
• it is Her-2/Neu positive and Her-2/Neu Fish positive. That means that it is aggressive and fast growing. It also means it will be it will be responsive to Herceptin.

From what the oncologist has to say, what a few years ago would have been a more difficult cancer to treat is now much more curable.

I do love my oncologist. Talking to him has put things in perspective and I am feeling much better.

Life is Better

Life is better because I am seeing doctors, some answers and that is helping me to feel in control. I like to be in control.

It's also good because I am to busy to sit and feel sorry for myself. I worked Wednesday and Friday and I'll work again tomorrow. These days I am in Kids' department. I love working there. I love seeing and talking to the kids. I even like most of the parents. And I often have a moment that gives me the giggles. Today a teen age girl was sitting on the floor in front of the the the bookcase of new releases for teens. I was putting some of those books on those shelves. I had to reach over he to put up the last few books. She started to move out of the way and I told her "That's okay, you're good" to let her know she didn't have to move. She looked up at me and said "I know". I loved the answer. I don't know if she misunderstood me, was being a smart alec or just agreed, but I loved her answer. It kept me smiling the rest of the day.

Thank all of you for your prayers, love, support and e-mails. It means the world to me.

I Have the Answer

It is not the answer we wanted but it is the answer I expected. I have invasive ductal carcinoma. It is estrogen/progesterone positive (which according the doctor is a good thing). We don't know if it is Her/neu positive yet.

I am to have a MRI on Tuesday. And if that looks good should be able to have a lumpectomy and radiation.

Saint Agnes sets up meetings with several cancer patients and on Thursdays with a Surgeon, Oncologist, Radiologist and Plastic Surgeon to learn more about all we need to learn about. That meeting should answer a lot of questions. If you folks think of any good questions to ask, show them in comments or send me an e-mail.

All in all I am feeling much better. The waiting is the hard part. While I don't want to have cancer, at least now we know what to do and where to go.

Send good wishes and say prayers.

Family Affair

The guy who made us call now.

At Albert's insistence, Al called the Surgeon's office. When they said the results were not yet in but should be in tomorrow, he asked them to call the lab while he waited on the phone. (husbnads and sons come in handy from time to time). According to the nurse, the lab says they have the results but they are waiting for sign off. I hope that is a good sign. I have noticed that no one ever worries about making sure the info gets to the patient timely if the results age good.

The nurse will try to get the results to us today, but the Surgeon will be out of the office this afternoon. So it looks like I won't hear until tomorrow.

As the great whomever say "knowledge is power". Knowing that the results are somewhere in the process, rather then lost in the great cosmos helps.

No Results Yet

I called the Doctor's office to see if the results are in. Not yet. At least knowing they are not in yet makes me calmer (at least for now).

Feeling Better

I've been working off steam by cleaning, sulking and taking a walk with hubby and the dogs. I'm feeling better. While the idea of having cancer scares me, it scares me because of the loss of control, the loss of hair, the discomfort and the disruption to my life. In my normal moments my attitude is so what-hard times happen to all of us. This is one of mine.

Bundle Of Nerves

I have to get through today, somehow.

I am a bundle of nerves. I have plenty to do to keep --book club is coming over Monday night and I need to clean. I need to clean a lot. I need to go shopping. Al and I plan on going out to lunch and seeing a movie. But no matter what I can't cram in enough to fill my mind every minute of the day.

The problem is this kind of work doesn't turn my mind off. I keep think I either have cancer or I don't and I don't know how to act or what to do until if it is cancer or not.

If it is cancer too bad. I've had cancer and I didn't like it. I don't want to go through that again and I tell myself I won't. I won't have cancer and even if I do -- too bad. I wont do any medical procedure I don't want to do and I don't want to do any of them. I will not have surgery. I will not have radiation. I will not have chemo. I will not lose my hair. I will not need anything from any one. I will not do it.

But all the time I know all of that is a big lie. I will do what ever I need to do to live a long and good life. In fact I will do I need to live.

If it is not cancer I'll be embarrassed. The radiologist and the surgeon have both said they thought it was cancer and I'm afraid. I'll be embarrassed because I showed that fear to my parents to my friends. That is not the me I like to show. I like to be strong. I like to be in control. Now I need them. And worse yet I am showing I need them. That need is okay if it really is cancer but if it isn't, I was scared with out a good reason. In my mind that makes me both needy and a dope. And being both needy and a dope is embarrassing.

It does go with out saying I would rather be embarrassed then have cancer.

Writing helps me feel more in control and feeling more in control makes me feel better.

I Hate Waiting

Today the Doctor may or may not call me with the results of the biopsy. I hate waiting. I don't want to leave the house, I need to be here for the call but staying here just makes the day drag.

My life is a roller coaster these days, I roll from good mood to miserable in the matter of hours. Yesterday I was chipper. I was at work and too busy to think about stupid calls from stupid doctors (sorry doc, I don't really mean it). I had also found a link on the Internet that discussed the differences between benign and malignant masses from the image on the ultrasound screen.

I copied the following from the article (GE Healthcare Brochure--Essential Elements of Breast Imaging Basics)

Characteristics of a Benign Nodule are :

• Ellipsoid shape or wider than taller orientation with a thin echogenic capsule and a width to AP dimension ratio of 1.4 or more.
• Uniform echogenicity or intense homogenous hyperechogenicity
• 2-3 gentle lobulations

Characteristics of a Malignant Nodule are:

• Hypoechogenicity
• Spiculated contours/Angular margins
• Taller than wider orientation
• Posterior acoustic shadowing
• Duct extension, branching pattern
• Presence of suspicious microcalcifications

Hypoechogenicity means the image is difficult to record with ultrasound. That means it shows as very dark. Spiculated contours means it is spiny, the edges are not smooth.

The image on my ultrasound was dark and had irregular edges. Both of those characteristics indicate cancer. The good news is it was wider then it was tall. That indicates benign. I'm not sure about the last three on the list for malignant masses.

Searching for information both helps me feel better and feel worse. I don't understand all of what I see. Even when I understand the meaning of what I read, I don't always know if it applies to me or not. All in all it helps me feel in control. Knowledge is power. The more I know the more I feel in control.

Of course the loss of hair and the loss of control are two of the worst things about the cancer experience.

Still Waiting

Yesterday I met with the surgeon. He was nice, was knowledgeable but the thing that really stood out was the fact that he had wonderfully warm hands. If some strange man is going let his fingers wander around private places on one's anatomy, those fingers might as well be warm.

He also looked at the films from the ultra scan and the mammogram and pointed out the characteristics of concern. And he said he believes it is cancer. I believe I have better things to do then have cancer . While his beliefs matter to me, mine (at least the one above) don't seem to matter to anyone at all.

Earlier today I went to Saint Agnes for a biopsy. I should hear the results by Monday. Watching the biopsy was fascinating. A nurse ran an ultrasound scanner while the Doctor first numbed the area and then took samples of the lump. The lump was a dark oval area and the surrounding tissue was gray. The needle was a bright white and the numbing medication shot in as a black spray. The biopsy needle was also white and when it took little bites of the lump it left white streaks. It was almost fun to watch.

It's time I took some Tylenol. My boob hurts.

First Pair of Knit Socks

I finished my first pair of hand knit socks while in Santa Fe. Socks are fun to knit and feel great on. I may be on my way to being addicted.

I have finished the first of the second pair and am about to start on it's companion. Knitting life is good.

Roller Coaster

Yesterday I was obviously feeling sorry for myself and wallowing in misery. Today I am on the upside of the roller coaster and feeling pretty good. I will get through what ever I need to get through. And of course the radiologist could be wrong and it might not be cancer anyway.

Moody Girl

Yesterday evening I was in a very good mood. It started with Al and I going out and having a great dinner with two of his friends. Between me having two glasses of wine and his friends being smart, funny people I left in a great mood. Such a good mood that the refrain in my head had broadened and not only included "I won't do this again" and included "it's a false positive, it's not cancer".



This morning is a different story. I want to be angry with the laws of nature, the laws of the natural universe. I want to be furious with them because the it is just wrong for a person to get two different cancers. It is just so clearly wrong that everyone should know that. No explanations should be given because none should be needed.



Being angry with the universe just doesn't work. It's like being angry at a rock, being angry at God. It just wasted time and effort. Being angry at the immutable doesn't change the process or help me grow and be a stronger person. And being angry at Nature sure doesn't make the cancer go away.



In stead of being angry with Nature or God I depressed. I'm angry with myself.



Many of the causes of cancer are beyond my control. But I did a poor job of controlling the things that I could control.

1. I did not eat healthy or exercise regularly.


2. I ignored the need for follow-up appoints for NHL and did not get routine mammograms.


3. I broke my promise to God that if I recovered from NHL I would live a healthier life.

I'm not angry with myself because I caused the cancer (if indeed I do have cancer). I'm angry because I did not do all the things I could do to live a healthier life and have any possible cancer detected at the earliest possible time.

Written June 6th

I Will Not

Written June 5th

I won't! I won't! I will not do this again. I dealt with it ten years ago and I won't do it again. I won't.

If I am home alone I'll scream it out every once and a bit. When the guys are home or I'm out in public the refrain is a mental song loop. I will not go through this again. I won't and they can't make me.

Of course I know that if I do have cancer I have it. Saying, screaming, yelling and thinking I won't will have absolutely no impact what so ever. Even so, right now I am stuck on saying I won't.

Odds and Ends

Albert is still alive. He passed his driving test Saturday morning, to his surprise. He takes every opportunity to run an errand or take a drive. The good news is he is ticket less and alive.

I realized the only thing I miss from my old job is entering the office and calling out "Honey's I'm home!!"

I am planning on applying for a promotion at my book store. It would be a lead in the children's department. That is my favorite department. I love the kids, I love the store. I would like it better if I could do that job part time, but I can't-they will only hire for it full time. And I would rather do the job full time then not at all.