What I have learned so far

1) When the oncologist says, 'It(chemo) won't be as bad as you think' believe him.
2) When the oncologist says, ' You have aggressive, large B cell lymphoma all over your body. But we can cure this" Believe him, even if you have a tumor the size of a grapefruit in your gut.
3) Each day carries its own beauty. You can see it if you look for it. e.g., on Chemo day I settle in for 6 hours of various chemo drugs. The clinic borders on Torrey Pines golf course where the big Farmers Insurance golf tournament is played. I can look out the window and see peace and beauty whenever  I want. But there is plenty of peace and beauty inside the room too.
4) Chemotherapy nurses are really nice. They are easy to chat with. And they let me make some of the treatment decisions, such as using a vein on my other hand for the red devil.
5) You can use your iPad during chemo as long as you don't have an IV in both arms.
6) You can text during chemo.
7) You can call your mother and tell her the cancer is gone during chemo.
8) They have free wifi in the clinic.
9) If you start working out and going to the Wild Animal Park after chemo, you will feel a lot better than if you stay home.
10) I have a whole lot of friends and a huge family that love and support and pray for me.
11) I don't have to miss anything because I have cancer.  I was able to go to SF to be with Katie and Bruce and Oliver for two weeks when Oliver was born.
12) They say 'bald is beautiful' But thats just to make bald people feel better. I was more beautiful when I had my own silver white hair. (See the picture at the very top of the page. That's me before chemo.) The next one is me after my head was shaved. 
13) A wig still looks like a wig, no matter what people say.
#12 &13 don't amount to a hill of beans
14) Life is beautiful and every day is a gift.

The joy of morning

As my mind merged into consciousness this morning, the sky out my window was a delicate pink. The sound of peace filled the air.  I am gifted another day on this beautiful earth. And I am grateful. 
I am grateful that I have the capacity to appreciate all that is in my world.  Im grateful that this adventure with cancer has not deprived me of my ability to appreciate the simple things in my life. My fellow travelers on this road are not as fortunate as I. Some suffer side effects from the chemo, or simply symptoms of the cancer that make it difficult to enjoy their lives. 
Every moment of every day is a gift.  Remember that. Watch for the things that can give you joy. Stop and think about them when they come your way. Keep a list so that you can go back and remember when things aren't going the way you expected. There are moments in each day, that can remind you of all that is beautiful. No matter how difficult your life is. This is what I have learned. 

Nights Hats and wigs and self image

Nights have become more of a challenge lately.  I wake up all sweaty several times. I have to get up and change my t-shirt. By morning I have usually changed at least three times. My head gets really sweaty too. One night I woke up and the hat I was wearing was just soaked with sweat. I have quite a collection  of hats. I find myself changing them all day and all night. When I awake in the night with my head all sweaty, I pull the hat off and lie there bald for a while. I drift off to sleep, only to wake up because my head is cold. So I reach for a dry hat and start again. Last night my hips were hurting. Im not sure why. Maybe it was my workout yesterday. That kept me awake for quite a while. I finally took some tylenol around 4:30. It took 45 minutes for it to kick in. All in all, I lost a good deal of sleep last night.
In the day time, I wear hats around the house. I put on a wig when I go out. The wig isn't all that comfortable. The inside of it is scratchy. I wear one of my simple thin hats underneath the wig. But it feels tight on my head and gives me a headache.  Sometimes I pull it off before I even get home. I miss my hair.
I sometimes forget that I am in the middle of this adventure with cancer. But an accidental glance in the mirror brings it back.  When I see myself all bald and kind of tired looking, I am brought back to sobering reality. This is not the me I know. This is some stranger who is living in my body.  I send love to this person who is just trying to make it through each day in peace and harmony. Cancer makes one change their most basic self image.  But not just cancer. We are constantly changing our self image in response to our life events. I was Michael's mother until he died. Im still his mother. But not in the same way.  I am Katie's mother. And now she is a mother and we are relating to each other in a new way. I have a much greater appreciation of Bruce, Katie's husband. He has taken such good care of her and Oliver(my grandson).  I am also Oliver's grandmother. I never thought I would be someone's grandmother. I have a greater appreciation of Frank, my wonderful husband. He has taken care of me in so many ways since this cancer experience started. My life is like a mobile, moving and spinning and changing.  All I can do is just flow with it and remember that the cancer part is coming to an end. Im free of the cancer. I only have to get through two more chemotherapy sessions. Then I can heal from the chemo and my hair can grow back. Its all good.

Back to the gym

Even though I said I wasn't going to go to the gym for a while, I decided to go today. I had originally planned to do my Wild Animal Park walk. But the day was cold and a little overcast. I realized that I hadn't had any sort of workout at all since before Oliver was born on January 2.  My muscles needed to be worked. I knew I would deteriorate in every way if I didn't get moving. So I decided to go but not push myself too hard. I did 20 minutes on the treadmill and about 30 minutes on various weight machines and doing some balancing exercises. When I left I felt so much better. Im glad I went. 

Talked to the nurse

I called the oncology nurse to discuss how I am feeling. She said it isn't unusual to start feeling not up to par at this stage of the game. My blood counts are probably low, meaning that I may be anemic. That would certainly account for feeling kind of tired.
I asked how much activity I should do. She said to cut back a bit. But don't stop moving altogether. I sure don't feel like going to the gym. But Im up for walks. 
She also encouraged me to keep my protein up and to drink enough water along with electrolytes.

Feeling a little draggy

This time around I'm not handling the chemo as well as I did the last 3 times. My get up and go got up and went. Not surprising considering the powerful drugs that are being infused into my body. I'm taking it easier while still getting 'out there'.
Today I just wanted to hole up at home. But the cleaning lady is there so I have to get out.
I have made my way to the mall for a leisurely mall walk. I'm sitting outside the church of Apple using their wifi the stores aren't opened yet. And the pace is leisurely. I have my latte. And Im feeling cool. I will make the full walk before I go home.
It does feel better to get out.
Two more rounds of chemo to go.

Prednisone and mood swings

I have been a little moody these last few days. It isn't surprising since this is a known side effect of Prednisone.  I have to take a very high dose of prednisone for 4 days after the chemo. It prevents side effects.  The usual dose of prednisone for most uses can be between 5mg- 40 mg per day. Im taking 100 mg for 4 days. Thats a lot of prednisone. And instead of tapering off, I just stop. Obviously this will give me quite a hit.
Prednisone can be used in cancer treatment in a number of different ways:

• to help treat some leukemias, lymphomas, and other types of cancer (usually along with chemotherapy)
• to help prevent or treat allergic reactions to certain drugs
• to prevent or treat nausea and vomiting caused by some chemotherapy drugs
• to increase appetite. (Unfortunately this is working too well. Im actually gaining weight. But the doctor said don't try to loose it while Im on chemotherapy.)
• http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/prednisone

So it is a necessary evil. Well, I guess it isn't fair to call it evil. It is a necessary part of the treatment regime. Even though some of the side effects are not what I would choose, it is helping me to avoid more unpleasant effects. It's a matter of trusting the process and allowing everything to unfold in perfect order.

Last night I was feeling depressed.  Since I know the culprit is the prednisone I could do some self talk. ' Im feeling this way because of the prednisone. Also, I have been on quite a roller coaster since this whole thing started. Not only have I had to deal with the cancer, but also, Katie had her baby and was in need of my special care longer than we anticipated. I know that these kinds of events can throw me off balance emotionally. So I will just ride this one out. This too shall pass.

A word about miracles

Now I'm going to tackle a subject that has been on my mind since this whole adventure started and before.
 I have been the recipient of more than one miracle in my life.  

One of them is the restoration of my eyesight that was being compromised by macular degeneration. This is a progressive condition that causes the central part of the field of vision to deteriorate. There is no known cure. But it can be slowed by various treatments and by taking a special combination of vitamins called AREDS. Because of our excellent health insurance I was able to go to one of the foremost eye research and treatment centers in the world, Shiley Eye Center. My vision was miraculously restored through an experimental procedure that is no longer done because they didn't get the results they were looking for. The procedure was only meant to halt the progress of the disease, but it actually reversed the damage. During this time many were praying for me.  I absolutely believe that my vision was restored by divine intervention through the treatment I received at Shiley.
At various times in my life I have been deeply involved in evangelical Christianity, starting at age 13 when I was born again by asking Jesus into my heart. A portal to heaven was opened that has never closed. Jesus was and is as real to me as any human being. I have also experienced angelic presences and intervention in my life. Sometimes someone I love reaches out to me from beyond the grave, i.e. my Dad and my son Mike, to give me love, insight and reassurance.
And now I am basking in the joy of knowing that my cancer has been cured. On November 1, 2011, I was told that I have aggressive large B cell non Hodgkins lymphoma throughout my body. I was also told it was curable. This was hard for me to believe until 10 days later when I was told that a tumor the size of a grapefruit was gone. After that I was on board for the cure. On Monday, 2 1/2 months later I was told the cancer is completely eradicated.
During this time many people were praying for me, each in the way that felt best to them.  This included my large family, my mother's prayer chain, and a large Baptist church here in San Diego as well as various people who are not involved with any church.  Throughout this experience I have felt nothing but peace and confidence. That in itself is a miracle, considering the diagnosis.
I no longer align myself with evangelical Christianity. I feel it is a limiting belief system that doesn't allow for truths from other sources to be considered. My feeling is that God is much bigger than the any box he could be put in.  I have hesitated to make this statement for many years, because I know it will be troubling to my beloved family members who feel that this is the only way to God and to heaven. But I know they know how I feel. I so very much appreciate their prayers on my behalf. And I acknowledge that God has responded. I feel that there is room for my beliefs and their beliefs in this big and complicated world we live in.  Im guessing that their hope is that I will return to the 'fold' so to speak because of my experiences with miracles. I have never left the fold. I love the Lord. I feel His presence in my life. I just love Him outside of the box. I feel very comfortable outside the box.  Of course this experience will and has changed me in ways I can not even imagine yet. All of life is about growth. If we are open to all that can be learned, we are alive. I am very much alive. Im very glad for the prayers and intersession on my behalf. My family and friends have come through for me in so many ways. I shall always be grateful. May I say to all of you, please love me as I am, and I love you as you are. We are not so far apart as you might think. Rest assured that I too was praying, as even now, I pray for someone else that I dearly love who is experiencing health problems.
Most of all I praise God for His miracles.  From time to time, I may take God out of the God box by calling God, I AM, the Universe or  All That Is.  To me each label is a slightly different nuance of the universal love that surrounds us all.  That's what all this is about, different ways of experiencing and expressing love. In the immortal words of the Beatles. 'All we need is love.' Maybe the best word for God is Love.

Post chemo hangover

The first night after chemo is the worst. That said, it isn't all that bad.  When I got home I had a light supper and settled in to my 'den'. I have my bedroom all cozied up. I love to cuddle into my bed with my computer my iPad, my TV and my furry friends and just chill. I usually have two cats sprawled out waiting to be petted. Thats why I can't knit in bed.

With each chemo session, I have had a headache that starts later in the day. The nurses give me tyenol. In the afternoon the last drug I get is cytoxine. It runs in over an hour. It has an effect on my sinuses. First I feel sneezy and congested. The nurse gave me some claritin.  It lasts for 24 hours. Next time I will take it in the morning.
We left the clinic at 3. It was a smooth drive home. Light traffic.
When I got home I had a headache. Not horrible. Just annoying.
As the evening wore on I felt slightly nauseated. I have an arsenal of medications for the various symptoms. Im trying to come up with a plan to take the right thing at the right time so that sleep will come at the right time.
Long story short, I tried to lie down at 10:30. But it felt like I was going to vomit. So I sat up in bed and propped myself up with pillows. I imagined my stomach relaxing  and allowing all of the medications into my body so they could do their jobs.  I felt my body relax and open up to receive the medications I had given it. At about 11:30 I was able to lie down and sleep.
This morning I feel relaxed and dopey. I'll take relaxed and dopey.

Here is the nurse mainlining the 'red devil'
No wonder I feel a bit icky. After this. I get a total of 4
different drugs over the course of 6 hours

And now, some good news

Today is chemo day. But first I saw the doc. He had all the test results. The cancer is gone. I'm not surprised. But I am thrilled. I gave the doc a very big hug. He said he wished all his patients did so well.
When I think about how my body was riddled with cancer just two months ago, I feel that this is nothing short of a miracle. To God (and his prayer warriors be the glory). Part of it is me. I had to let go of my anguish over Mike And I have. I have reached a place of acceptance and release.
I'm sitting here having my chemo. When the nurses brought me in they said they were reading my reports and they were really amazed.
I will continue with the rest of the chemo. This is my 4th. I have two more.
Love to all.

CT Scan, PET scan echo cardiogram

These are just some of the words you will learn if you follow along with this blog. None of these words mattered much to me BC (before cancer). Now I want to know the difference between a CT Scan and a PET scan. The same machine was used for both scans. The CT scan had me going into the machine feet first: 

 The PET scan had me going in head first: Note that my arms are strapped to my sides. My job is simple: DONT MOVE. For 20 minutes each scan. 

Time to Google:
PET and CT scans both involve the use of high-tech imaging equipment to examine the body's internal structures. However, a PET scan can reveal changes on a cellular level, while the CT scan reveals changes in the overall structure of organs or tissue. A PET scan can detect diseases at an earlier stage than a regular CT scan.

PET Scans

• PET stands for "positron emission tomography." This scan uses a small amount of radioactive material that is injected into a vein, inhaled or swallowed. The PET scan reveals where the radioactive material accumulates and can detect problems with blood flow, oxygen use and metabolism. In my case they are looking for more active cells that would indicate cancer cells.

CT Scans

• CT, short for "computerized tomography" (sometimes called a CAT scan), combines a series of X-ray views and provides cross-sectional images. These images can be viewed individually, likes slices of bread, or combined to produce a three-dimensional view.

Being a cancer patient takes a lot of patience. There is a lot of waiting involved. When I went in for the PT/CT scan (both were done) I was taken to a room with a reclining chair. An IV was started and I was injected with radioactive glucose. The technician brought it in in a thick metal container. The syringe was incased in another thick metal case about 2 inches in diameter. The actual injection was an anticlimax. I didn't feel a thing. For someone with cancer I sure am being injected with a lot of toxic stuff. Then I was told to drink a pitcher of water with contrast dye in it. It tasted like water. Then came the hard part. I had to sit in the chair quietly for 45 minutes. I wasn't allowed to do anything, including iPhone iPad etc. It isn't very often that one is completely unplugged from civilization. I decided to use the time to meditate. Im really not very good at meditating. I looked at my watch every 5 minutes. I was also COLD. The room was just cold. They gave me warm blankets. But I was still cold. It seems the machines like cold. sheeesh
I was also hungry. I had to fast for 6 hours prior to the procedure.
Finally the tech came to get me and we did the two scans. I asked him to take pictures of me for the blog. So, yes, that's me.

As for the new family up north, not a word from them. They must be in full baby mode.
Chemo tomorrow.. one thing at a time....Hopefully we will get some results from my tests today. I see the doc before the chemo.

Crunch time

Today is the big day. It's midterm time. I will have my half way point tests to see how the cancer is responding to the chemotherapy.  I feel very confident that all is well. One of the amazing things about this experience is the peace that I feel. You would think that if you were told that your body has cancer all over the place that you would sink into an abyss of fear and dread.  But that is not the case. I feel very optimistic as I move through the process of eradicating the cancer. Notice I don't say, 'my' cancer. Im not owning this. It came to reside in my body to teach me. What have I learned? Ive learned that I must let go of my turmoil and grief over Mike's death and his troubled life. If I don't it will kill me. This experience has given me the peace I longed for. I spent a lifetime trying to help Mike. Im free of that now, as long as I let go of it. Acceptance. That is what I have learned. Accept the life and death that Mike had.  There are no explanations that can satisfy. So I will just accept.
I learned this from my experience with cancer.  No matter where I am on the continuum of treatment, I expect to ultimately clear it. 
Another concern I have had since the moment I was diagnosed was, would I be able to be there for Katie when she had her baby?  Yes, I was. I was able to be all that she needed during this crucial time in her life. So I have one more area of concern that is no longer there.
Now is the time to turn to myself and continue the healing process from the extraordinary year that has just passed.
I feel upheld by the prayers of friends family and strangers.  It's great to be a human being on this beautiful earth!

Baby Oliver is born

It has been two weeks since I have blogged. There is a very good reason for that. On Monday January 2, Katie(my daughter) called me to tell me she was in labor. The baby wasn't due until January 25. He wasn't early enough to cause concern.  I called my sister Shirley. She already knew that Katie was in labor and was ready to assist in any way that was needed. I managed to get a flight to Oakland. Katie and Bruce live in San Francisco. Shirley met me at the airport and drove me to the hospital. On the way Bruce texted me that Katie was 10 CM. That means it was time to push the baby out. We made it across the bay bridge and to the hospital in a short time. When I walked in Katie was just starting to push. From this point it is a long and complicated story. In the interest of privacy I won't tell it here.  To summarize. Oliver OBrien B--- (name excluded for privacy) was born at 8:45 PM on Monday January 2. He weighed 6 lb 5oz. He was a bit small from being 3 weeks early. But he didn't seem to care. He let out a lusty yell just like the bigger guys. Katie had some complications.  She spent a lot more time in the hospital than usual. Bruce and I were at her side throughout, helping care for the baby and for her. 
On Thursday, little Oliver was jaundiced. He needed to go under the bilirubin lights to help his body convert the jaundice to a form that can be excreted in the stools.  The whole family was moved upstairs to the peds unit where Oliver was put in an isolette under the lights. Katie was given a hospital bed to sleep in, even though she was no longer a patient. There was a cot for another person to sleep on.

Oliver under the lights

Oliver didn't seem to mind the lights a bit. Katie called it 'sunbathing in Rio' We took him out to nurse. We also supplemented him with formula to give him extra hydration and clear the jaundice.

The next morning, Friday Oliver was discharged and we packed up to go home. It was fun with the car seat time.

We went home to be a normal post partum family.But alas, that wasn't to be. Katie had some more complications and had to be readmitted to the hospital. They told her she could have Oliver with her as long as there was someone to care for him at all times since he wasn't technically a patient. As the week wore on, the 'A' team began to hit the wall. Lack of sleep is a tough thing to overcome.  So we asked the Aunties to come and help.

I put out an SOS to my sister Shirley and she rallied the troups. She came over and stayed the first night. 

The next three nights, Aunty Sue came. And helped. Katie was released from the hospital on Monday. We went home and finally began to feel like a normal post partum family
We got some help from Aunty Mary after Sue left.

On Thursday we had our first outing to a classic San Francisco neighborhood called Cortland. We settled the baby into his car seat. Threw the stroller in the back and off we went.  It was great to see Katie so healthy and normal, after all she had been through.

By Friday I knew it was time to go home. My next chemotherapy is scheduled for Tuesday. I want to feel rested and ready for that.

I did what I wanted to do. I helped Katie and Bruce and Oliver through  a very tough time. In the end we got a healthy newborn, a healthy Mom and a very grateful family. 
I want to thank all of you who helped us, whether in person or in prayer and support. I know that your prayers and loving support were a factor in the outcome of this.
The moment I found out I had cancer, my thought was of Katie. I told the doctor I had my first Grandchild due. He promised me I would be there. The timing was perfect. 6 days after my last chemo, Oliver was born. I didn't have another chemo due until two weeks later. I was able to be with K&B&O for almost two weeks. They needed every bit of my nursing knowledge and every bit of my gramma love and support. I felt completely normal the whole time. I made sure to get my sleep. That was the key ingredient.  I feel as healthy as I did before this all began. Monday will be a big day for me. I will have a battery of tests to see where we are with the treatment. It will show us whether we have eradicated the cancer. Im thinking that the results will be excellent.