Monday, April 30, 2007

Finally, the start of treatment

I'm sure we'll look back at this week as only the start of the battle, but now it seems like looking through the wrong end of the telescope. Everything seems distant and unreadable. What will happen? How will Deb react to chemo? And so on.

By the way, how do you like the new photo of Deb and Strider taken by Sebastian?

I found some good sites on wigs and hats. Deb will need something within the month so we need to look at styles and such. I'm going in for a sleep test and I'm told that if I need to wear a CPAP mask at night I'll need to shave off my beard and mustache. So then, Deb and I would be like twins, right? Maybe a long wig for me. The Dolly Parton look? Anyway, we have been reading some of the cancer web sites on the Internet. Breast Cancer dot org is good. The Susan Koman site is full of good information.

There are great web sites full of individual stories such as healing well dot com, that help us not feel so alone and give us hope that Deb will survive this battle.

It was difficult the last week not to be overwhelmed by all of this. Both Deb and I were very tired all week and didn't do much this weekend. Both of us feel much better today. Our emotions are so close to the surface. Deb had never had surgery or any serious illness or injury before, so all this is new to her. She is taking it one day at a time and both of believe we are going to see her beat this thing and survive for many years!

Daughter Erin has volunteered to have Sebastian come to their home in Philadelphia and they would take him to see the sites in New York City and Washington. We are still discussing the details, but this would be a wonderful solution for him to see some history.

We continue to have strong support from friends and family. Sebastian has helped Deb at church during the set up of communion and at home whenever he sees a need to help. What a guy! God has been very good to us and we praise Him. We also pray, and ask that you pray for Dan Krupa who is fighting his own battle with cancer.

Thank you all for reading this and your support.


Thursday, April 26, 2007

More Good People and Amazing Support

Dear friends,

It bears repeating that friends and family always show just how wonderful they are when a crisis arises. Deb and I have been so blessed by prayers, letters, cards and phone calls. Today we received a bouquet of cookies from my sister and her husband. Last night the Hicks gave Deb a great angel. When I was visiting my Mom over the weekend, my sister sent a beautiful necklace home to Deb. The best gift for me is seeing Deb smile when she reads the e mails and cards.

We were talking today and we think that the answer to all the prayers may just be that all the tests show no cancer anywhere else but the original tumor. So to all of you that are following this blog, thank you and God Bless You!! We don't know where this is leading but we know who is leading us.

Today we met with Jill Behm, a certified nurse practitioner with Dr. Weyburn, Deb's oncologist. She is very skilled in sharing all the nuts and bolts of chemotherapy and how Deb may be affected by the process. She decribed the initial meds used, Cycolphosphamide (Cytoxan) and Doxorubicin (Adriamycin). They will be given one at a time during a two hour session every three weeks for four sessions. Adriamycin is called the red devil, as it goes in red and comes out red. Benadryl will be given first, before chemo starts.

Both of these chemicals cause hair loss, and Jill thought by the second session, May 24th, the hair would start coming out in clumps and be totally out within three days after the second chemo session. I volunteered to give Deb a buzz cut before all of that. I don't know if wigs or hats are part of the program, but Deb will look so Brittany :).

When the first round of chemo is finished on July 5th, a decision will be made by the doctors how to proceed. If the tumor, now about as big as a lime, shrinks enough, they may recommend surgery to remove it. There is a certain charm in having the offending item removed like you would a loud obnoxious guest at a wedding or a drunk in a midnight choir. The removal is more symbolic than anything else, because even with surgery, chemotherapy continues for several weeks or months. Cancer cells are so small and the hope is that with continued chemo there will not be any lesions developing. Speaking with people who have survived cancer, they all tell me that the thought of recurrent cancer never leaves your mind. Any new ache or pain, a bloody nose or a cramp, can send the worry index higher than the Dow Jones index. It doesn't hurt to be optimistic. You can always cry later. ~Lucimar Santos de Lima

Chemo starts with a visit to the doctor and doing a blood screening. White cell counts are critical, but after checking general health Dr. Weyburn will sign off and chemo will be started. We toured the area where chemo is administered. Lots of nice people, comfy reclining chairs and large windows looking toward a beautiful garden area. There are benches and ponds, with ducks and flowers. In the garden of course. I know what you were thinking.

It is expected that the day of chemo Deb will feel fairly well, although until she actually goes through it, we won't know for sure. Within two or three days she may feel very tired and have to stay home for a day, or she may not experience any of this at all. Then, as we understand, between the tenth and fourteenth day the greatest risk occurs of picking up a germ as the immune system is at its weakest then. If Deb has a fever we are to call the doctor at once no matter what time of the day or night. There can be great danger because Deb will not be able to fight off most germs. Deb must keep a diary of every medication taken, when taken and be able to communicate that to the on call doctor in case of an emergency.

Jill did say that we shouldn't become hermits and live in constant fear. Some common sense thoughts should be used. We should avoid crowds and sick people and wash our hands frequently. We may want to avoid travel on planes and traveling in areas were there is little access to a hospital.

After the first course of chemo, most likely Deb will start Taxol or something similar. This may go on for several months and will continue the hair loss (it should all be gone by then).

Oh, I didn't mention nausea. Deb will get something for nausea before chemo, and I filled a prescription for her today. My buddy Gene Parvin at Metra, told me that his wife, who is going through this as well, but about two months further in it than Deb, had some anti nausea pills that cost thirty dollars a pill! We are so blessed to have health insurance.

Deb will go to Good Shepard Hospital on Tuesday at 6:30 am to have a medi port surgically implanted in her chest. This will allow the direct infusion of chemo without trying to find a vein in the arm. Hopefully blood can be drawn from the port too. Next Thursday, 5/3, is the first day of chemo.

Deb and I understand that while this is new to us, all the professionals have been doing this for quite a while. We are very satisfied with the doctors and their staff. They all seem so compassionate and caring. I am sure that I would have a very difficult time doing what they do with the grace and charm they exhibit, and then go home to their families and try to forget for a little while the life and death battle they see every day.

One thing strikes me and that is Dr. Weyburn's waiting room. I suppose it's only human nature, but I find myself looking at the others sitting there, wondering which of the couple has cancer and praying they get well soon. There are a lot of support groups for cancer, more for breast cancer I suppose than others.

The journey is just beginning and as we draw strength from our friends and our faith, we know that we are all the richer for knowing all of you who read this and think of us. Not what we give, But what we share,For the gift without the giver is bare.~James Russell Lowell


Tuesday, April 24, 2007

Hurry up and Wait

Well, here we are, into another week, with more tests, doctor appointments, decisions to make, and still with the certainty that deadly cancer is present, but not yet being fought with all the tools available.

Deb and I kept the scheduled appointment with Dr. Weyburn today. He is the oncologist recommended by Dr. Compagnoni, Deb's surgeon. He is a dapper guy, probably in his late thirties, well dressed, but without exuding the compassion of Dr. Compagnoni. He spoke with us for a while after Deb completed paper work for his office that was about the same thickness of the Chicago Yellow Pages.

He asked what we had discovered about breast cancer and the various treatment plans and we shared some of the Internet stuff we've read and what friends had shared with us. He was very pleasant to speak with and examined Deb and reviewed the tests and the medical options we've previously discussed with Dr. C.

He recommended that we proceed with a medi port device that's installed below the skin in the chest. It connects with a large vein and facilitates the flow of the chemical cocktail into the body. It would be implanted as a out patient surgical procedure by Dr. C., so we would have to make another appointment with her to have that done.

His second recommendation is that Deb have a echo cardiogram to make sure her heart is in good shape as some of the chemicals can stress the heart muscle. He didn't suspect a problem, but wanted to check anyway. Deb was able to schedule that for Thursday after the liver ultrasound and the meeting with Dr. Weyburn's staff.

Deb decided to start chemo next Thursday, May 3rd. It will be on a three week cycle for four times. So, she will have two hours of chemo on 5/3, 5/24, 6/14 and 7/5. Today she got the I Pod I ordered, so she can listen to music, watch a movie or a TV show during the chemo session. During this time she will be constantly monitored for her general health, her heart and her white blood cell count. Her beginning drugs would include adriamycin with cytoxan. She will probably loose her hair, but then she will look more like me (a good thing?). She would probably have one or two months of taxol after the initial sessions.

Dr. Weyburn explained that she will probably feel well for a day or two after chemo is administered then may get very tired for a day or two. Her greatest risk of being around people and catching something is between the seventh and fourteenth day after chemo.

Dr. Weyburn also wants to have Deb and I visit his staff nurse practitioner to discuss the chemicals being used and go over the procedure used on days when chemo is administered. Deb and I will go to that together and see the area and equipment used. Dr. Weyburn also suggested that someone be with Deb when chemo is given and when the medi port is installed.

Deb has a liver ultra sound this Thursday and the appointment with Dr. Weyburn's nurse after that. My impression is that this treatment is the standard care associated with this type of tumor and there are predictable results. Dr. Weyburn will submit a treatment plan to Blue Cross for approval.

There may be an option to take Sebastian to the east coast as we planned, as the timing would be right, but we have to decide if Deb would be up to it, as we can't really turn Sebastion loose in Washington DC or NYC alone. We've been struggling with that as all three of us had planned for some time to take this trip. We sent information to CCI (His exchange group) and his parents about Deb's issues. We know he could go home early, but it would be great to take him east. He has been the best kid you could ask for, and as someone who never had a son, I know ordering one would turn out to be an awful lot like him.

So here it is at last, the last few details. It makes me wonder why we cling to plans we've made for our lives.

“We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.”
Joseph Campbell quotes (American prolific Author, Editor, Philosopher and Teacher, 1904-1987)

Deb is the perfect patient, focused, willing to listen, knowing that something may and probably will go wrong, but it will be OK.

Three grand essentials to happiness in this life are something to do, something to love, and something to hope for.

Deb continues to get cards from friends, co workers and family. The one from our granddaughter Quinn brought a few tears, it was so cute. The prayers and love lift her up to a serenity she could not have without the grace of God and good friends.


Saturday, April 21, 2007

Rest and Recovery before the Storm

Today is Saturday and I am in Michigan visiting my mom, who has been declining in health for some time.

Deb was going to use this weekend to rest and prepare for the start of chemotherapy next week.

We agree that the outlook is good for a full return of health after six to eight months of chemo and then surgery. I think we know in concept how dibilitating the effects of the chemo can be and we are prepared for that possibility.

It it interesting to read other sites and trace the journey of others who have battled cancer. The many ups and downs, side effects like nausea, difficulty eating, weight loss, lower white blood cell counts and the depression that is only natural when you are fighting for your life.

It seems that the partner of a cancer patient has to be pretty strong and supportive during the treatments. I only hope I can measure up. Deb is the one with the silent strength needed in these circumstances, while I notice the last few days an increasing sadness in me and some anger. My mom is slowly dying and now with Deb having cancer it seems a bit overwhelming to me.

I have so many things to be thankful for and many people to pray for too. God will have to work overtime so I can get it all done.


Friday, April 20, 2007

Great News and Not so great News

Friday, April 20Th.

Today was the day with the surgeon. We did not expect any of the test results to be available for her to review for this appointment, so we didn't expect much hard news.

We were surprised to have her say she did have all the results. Deb's surgeon is Dr. Gia M. Compagnoni, a very attractive woman of perhaps forty with a great talent for communication and establishing a rapport with Deb.

She explained that Deb has lobular cancer in her left breast.

lobular carcinoma (LAH-byuh-ler KAR-sih-NOH-muh)
Cancer that begins in the lobules (the glands that make milk) of the breast. Lobular carcinoma in situ (LCIS) is a condition in which abnormal cells are found only in the lobules. When cancer has spread from the lobules to surrounding tissues, it is invasive lobular carcinoma. LCIS does not become invasive lobular carcinoma very often, but having LCIS in one breast increases the risk of developing invasive cancer in either breast.

Deb does not have invasive lobular carcinoma. It is confined to the left breast.

There is a six centimeter tumor that cannot be seen by a mammogram, and may have been growing for ten years!!

The size of the tumor places her in the T3 range, but the good news is that all of the other tests, including the MRI on the right breast were negative for cancer. That is not to say cancer cells are not floating around the system, but there is no sign of any problem from the bone scan or the CT scan.

So Deb will have to start chemo right away. This will be monitored for six to eight months. The hope is the chemo will kill any cancer cells and reduce or eliminate the tumor.

It isn't very likely to eliminate it, but if the initial chemo cocktail does seem to work they will experiment with different formulas. The importance of this is that the tumor is so big that the only way to surgically remove it is to take off the entire breast. If it shrinks, the surgery would be less invasive.

Dr. Weyburn is Deb's oncologist. She will meet with him next Tuesday and start chemo right away.

The scan also detected a small 1 centimeter lesion on the liver. Deb will have a liver ultrasound to determine if it is a problem, or simply a cyst.

This is a long slow process but praise God, it appears to be one for optimism. Deb and I were very encouraged by everything today including the visit to the cancer center at NIMC.

I know that all the prayers being offered were heard by God, and we hope they will continue. We are so blessed by our friends, family and the crazy people at COF. Deb tells me now how blessed she feels and how exhausting it is to consider all that lays before her, but with the grace of God and with the strength of prayer, she will persevere.

God Bless everyone.


Thursday, April 19, 2007

Tests and Exhaustion

Today was another challenge. When the doctors order tests, they have such innocent names, like MRI, Bone Scan and CT scan. What they don't tell you is that you will have to swallow about three gallons of barium solution for contrast when you have the CT scan and have an IV drip for the other two tests.

In fact, it was two or three glasses of barium, but it coursed through her system causing lots of interesting issues including mad dashes to the loo.

She came home about noon very tired. I took her to the last test in Buffalo Grove and when we got home at 5 pm she went to bed, foregoing the monthly dinner with the girls that she was looking forward to attending.

Tomorrow we visit the doctor and so we should know a bit more.

God is so good to us. We have medical insurance and a chance to beat this disease.


Wednesday, April 18, 2007

Overwhelmed by it all

What great support from every one. People from Community of Faith, friends, former and current co workers and family. I have talked to more people this week than I can remember. When I was working yesterday as an election judge, I was so thankful for their support. They made arrangements to take the supplies and ballots back to the county for me so I could go home and be with Deb.

Deb is on her way home from the hospital after blood tests. Masha, our Russian exchange student from last year, sent a great note to me for Deb. There are so many people sending their prayers to God.

Deb is handling this very well. She was a little overwhelmed yesterday after she heard about the cancer but seems to have rallied and is doing better today.

It's strange how we take life for granted. I wouldn't be the first to be shocked by the disruption of my plans. Plans, I assumed would come to fruition. I can't believe how tired I am today. Too much going on for me.

The Beginning

Now all this begins with an abnormal self exam in February. It is followed by an appointment with the family doctor, Dr. MacDonald in early March and then a mammogram. In spite of the normal mammogram, Dr. MacDonald referred Deb to a surgeon. A subsequent exam on 4/13/07 included a biopsy.

On Tuesday, 4/17/07 Deb learned she has cancer in the left breast. This was not a total surprise because there had been a physical change in the nipple and a hardness in the breast.

Today, 4/18/07 Deb is having some blood work. Tomorrow she will have a CT scan and a bone scan. A meeting is scheduled for Friday with the surgeon and a MRI in Buffalo Grove takes place in the afternoon. I will probably go with her on Friday.

We won't know the treatment plan until the tests are complete and we meet with the surgeon again.

This follows my dealing with a high PSA test in March. A subsequent biopsy was benign and I'm doing well.

I hope I can have Deb share some of her thoughts here.

Deborah Lynn Keller was born on June 15, 1959. She attended Wauconda High School.