Little things

After reading Bald in the Land of Big Hair by Joni Rodgers. (She is the woman who had Large Cell lymphoma like me. But in the 90's) I realized that some of life's little annoyances can be related to chemotherapy. As of a few weeks ago I no longer have eyelashes, eyebrows or for that matter any hair on my body, if you get my drift. It turns out it is more than an annoyance. Eyelashes filter out dust before it gets in the eye. Joni mentioned this in the book. I guess that explains why I have gotten something in my eye several times a day. I need to get some eye drops to rinse them when that happens. I always put on makeup before I go out. One of my goals is to not have eyebrows that look like I just drew a line with a pencil. I have been trying various methods of applying my eyebrows. The best thing I have so far is one of those little round brushes that are used to put mascara on eyelashes. I turn it around in dry dark colored eye shadow and brush it on where my eyebrows should be. It gives a sort of feathered look.. As for eyelashes, I tried false eyelashes. But Frank took one look and said they look awful. I was thinking the same thing. So Im glad he said it. I can always count on Frank to be honest. Even when he says something I don't want to hear.
I try to make the rest of my makeup look as natural as possible. Even without makeup I look pretty healthy. That is encouraging.
So, lets recap.
Being bald all over means:
1) I can save money on shampoo. I just take a soapy wash cloth and run it over my head then rinse. It actually feels pretty good. Im starting to get some fuzz on the top of my head. But from the looks of it, it will be a very long time before I have enough hair to go wig less in public. I do like running my hand over my head and feeling stubble.Some people just go out bald or with some sort of hat or scarf. But I prefer not to scream CANCER when Im out and about.  I find that people don't know how to treat me and seem uncomfortable. Besides, I like to forget that Im bald sometimes. So I just plop a wig on my head. I have gotten several complements on my 'hair'. I sometimes tell the person it is a wig. And they are surprised. But mostly I just thank them.
2) I don't have to have my eyebrows shaped by a professional.
3) I don't have to shave my legs or anything else on my body. This saves time.
There is more. But I can't remember right now. Anyway, I think I covered this several entries ago.

An Opportunity

When you are a member of the cancer club and you meet someone who has just joined, it is an opportunity to help them find their way through a maze of conflicting fears and questions.
On Saturday Frank and I went to a Toyota dealer to buy a Prius. Our daughter Katie and her husband Bruce need a good car to transport our Grandson Oliver around. Katie's car is very old and  not safe for a car seat. Bruce's is old as well. So we decided to give them Frank's Corolla and get a Prius for Frank. We are so fortunate to be able to do this for them.
We have a dealer that we like here and have bought three cars from them over the years, Toyota of Poway. It seems that March is the month that they clear their 2011 cars to make way for the 2012  models. Sure enough they had a car that fit the bill for us. We made an initial call and talked to the manager. He told us the car advertised was still available.
When we arrived we were assigned a sales person. The car we wanted was being sold. So we were looking at a 2012 for about $1500  more. Still not a bad deal. We had just sat down to begin discussions when the manager came over and introduced himself. He told us that the people who were buying the car we wanted backed out and it was now available.
As our salesperson gathered information from us and for us, we chatted with the manager. The conversation strayed to other topics and for some reason I told him I was being treated for cancer. I think it came about because we were talking about Frank's military service and that we had Tricare insurance because of that.
The manager told us that he was about to start treatment for colon cancer. He found out a few days ago after a routine colonoscopy.
I said to him, 'Look at me! Two days ago I had  4 powerful chemotherapy drugs put in my body over a 6 hour period.' He was amazed, as obviously I was feeling great! I told him it wouldnt be as bad as he thinks. I told him that over the years they have perfected techniques of treating cancers. They know what side effects to expect and take measures to prevent them as much as possible.   It isn't going to be a walk in the park. But it is doable.
He seemed relieved to talk to someone who had 'been there' and was doing ok. At one point I pulled off my wig in the middle of the car dealership to show him bald. He was in his 50's and had a nice head of hair. I could see that hair loss was weighing on his mind.
I felt it would take away some of the stigma to see someone who was adjusting to one of the most visible and personal signs that someone that has or had cancer recently.
As we went out to claim our new car I stopped by the manager's office and said, 'Don't worry, it will grow back. It's only hair' He seemed relieved.
Paying it forward is the best!

Gratitude

• What Im grateful for today:
• My beautiful Grandson, Oliver
• My beautiful Daughter Katie and son in law Bruce
• 
• The fact that all my medical care is paid for. I was able to go in to urgent care yesterday, sign in and never worry about the cost.
• The bills just keep rolling in for my cancer care. But they aren't really bills. They are from the insurance company telling what was paid. Between Medicare and Tricare it is all covered. One chemotherapy session is $9000. Thats right, 9 THOUSAND dollars.
• The doctor in Urgent Care knows my Oncologist Dr Saven. He told us that Dr Saven worked for a small biotech company here in San Diego and helped develop 
  
  

  Rituximab  This drug was added to the cocktail some years back and is the drug that pushes the cure rate for my kind of lymphoma to over 90%. Im grateful for Dr Saven.
  
  

Finished the third round of chemo

The day went well. Each dose of chemotherapy went in without a hitch. First one goes in over about 3 hours. If I were to have a reaction to it, they would have to slow it down. But I didn't, then on to the vincristin mainlined into the iv. Then the red devil, main lined over a half hour. The nurse sits there and patiently pushed it in while watching carefully for a reaction. She had to wear gloves to protect herself. If she got it on her skin it would burn her. The main thing with this drug is that you do NOT want it to get out of the vein into surrounding tissue as it will cause necrosis. Isn't it amazing that a drug into a vein is a good thing, but out of the vein is very bad. Anyway, it went in without a hitch. The last one was cytoxin. It goes in over an hour. That the one that causes a little sniffle and a headache. But a claritin and a couple of tylenol took care of that.
We got home at 5:30. I had some Trader Joes lentil soup. Delicious! Just like Mom used to make. 
Talked to Katie for quite a while making plans for the baby. All fun stuff!
Life is good!

wig, hat, wig, hat, wig, hat

In the interest of taking some of the stigma out of being bald, I have decided to talk about the various aspects of dealing with it. First let me say, that from my point of view, this is no big deal. It's just something I have to put up with for a few months while the chemotherapy takes care of the cancer. There were some doubts about whether I shaved my head too soon. The next three weeks or so, there was stubble all over my head, which would indicate that I still had hair. About a week after my latest chemo on November 29, there was a little more hair loss, but not easy to see because I was shaved. Now, about 6 weeks in, I have what could be  described as 'male pattern baldness'. Essentially the front 1/3 of my head shows no sign of hair. So, I have joined my brothers in the baldie club. Im glad I had my head shaved early on. It saved me from constantly looking in the mirror to see if I was loosing my hair and then having to make a decision to get my head shaved. I did it in one fell swoop.  Like ripping off a bandaid.
In the course of a day, I find myself changing from wig to hat to another hat back to wig and also just letting the bald hang out cause my head gets sweaty and itchy. I have my favorite hats. They are soft and come down over my ears. Here I will model a few of them. 

This little number was made by my
 Mom. I think it is kind of
pixie-ish

I call this my winter wonderland look.
It comes with matching gloves. Very soft.

This one, I got at the Chemo center.
They have a patient/family library where
they have a large selection of
free hats and wigs.
Again, very soft and stays on
when Im sleeping.

Sometimes I just take all of them off
and just go bald because my head
is sweaty or itchy. But I only do
it at home.  I don't like to go around
advertising that Im being treated for
cancer because cancer is not what
 defines me.

This is me with the wig. I like
this look the best and try to
 wear it when Im out in public

Side view. I got this wig for free
from the chemo center. I like it
better than the one my insurance
paid $300 for. Go figure.

Normal Life and a big thank you.

If I wasn't bald, I would forget for days that I have been diagnosed with cancer.  I like to use that terminology because I feel that this has been taken care of even though I was diagnosed with it. I will go through the treatment plan and then move on.  I feel 100% normal and very healthy. The only issue is that I have too much appetite!  I am trying to be more careful about what I eat so I don't have to go back and loose weight all over again. I know intuitively that this isn't the time to try to loose weight. So I have to eat healthy and avoid the sweets.  I am having cravings.  Sheesh!
I am back to my pre cancer  exercise regime, gym/ Wild Animal Park. When I do either one I get this feeling of well being. The endorphins course through my body and I feel happy, peaceful centered. 
This journey has been amazing. All the things I dreaded about chemotherapy just havent materialized. Who would think that I could feel this good while undergoing chemotherapy?
Yesterday I called the doctor who first found the tumor in my gut. Her name is Dr. Day. I thanked her for saving my life. She was very touched. She said I made her day, and her Christmas. She not only found the tumor, she pushed me through the process of diagnosis and treatment very quickly. I believe that because of her quick action, the cancer has not spread to my bone marrow. This makes the treatment so much easier. I was at stage 3. If it was in my bone marrow it would be stage 4...the worst. 
Dr Day told me that it is a good thing the tumor was located where she would be able to find it. She said that the reason people die of ovarian cancer and pancreatic cancer is that by the time it is found it is too late because of the location deep within the body.  I believe that this whole thing was a part of some miraculous plan for my life. I have learned so much already!
I have cleared all resistance to this and to the other areas of my life that had me in turmoil.  Im in a place of gratitude. That feels very healing.

Two Down, Four to go

It has been a good day. I like hanging out with nurses. There is a camaraderie  between us. Even when Im in the bed and they are ministering to me. My IV was kind of tricky today. I was dehydrated from yesterday's 24 hours with out food or water. So she had to put the iv in a vein that kind of snaked around my arm. So it was touchy. If I moved my hand wrong it would stop. The alarm on the iv kept going off. We played with the thing all day looking for just the right position. When it came time to main line the super toxic 'red devil' I suggested that they use another vein. I didn't want to risk it infiltrating and causing tissue damage. She got in to the other vein on my other hand pretty easily and the red devil went in without problems. But I couldn't do my usual squirming and wiggling and playing with my toys. So I put my ear buds in and turned on meditation music. I imagined those life saving chemicals moving gently through my body, nudging the cancer cells, telling them its time to go. When the last bag was hung I called Frank to come and get me. Both hand were tied up. But I was able to push the button for Siri and asked her to call Frank. She did! So cool. Add this to the list of things my iPhone does for me.. Call Frank when I can't really dial. Very cool.
Anyway, Im home now. When we got home I decided to take the dogs for a little walk. Frank and I walked to the top of the hill and back. It felt good to stretch my legs.
So far I feel pretty good. Just a bit of a buzz going on.

Home sweet home

Out of the muck of Sacramento, into the sunshine in San Diego. Its pushing 80 here. Kitties and doggies are in their usual places lolling around on my bed and the floor.
All seems right with the world. As long as I stay in the moment. The future, not so good. On Monday I will have a procedure called a trans esophageal  echo cardiogram. It seems the cardiologist thinks he saw something on the regular echo cardiogram and wants to get a better look. This will involve the usual preparation, nothing by mouth after midnight, arrive at 1:30, prepare for the procedure, get anesthetic, have the thing stuck down my throat through my esophagus all the way down to my heart. Have a look see.  Pull it out, wait for me to wake up. send me home. The next morning, back to Scripps for chemo. It isn't looking like a fun week.  Im a little more apprehensive about this latest procedure. There are more possibilities for screw ups.
It takes a lot of faith to be a patient, (And a lot of patience. (pun intended) and allow people to poke and prod my body, put instruments here and there, stick needles and put highly toxic chemicals into me.
What the heck.. what choice to I have??
Maybe I should try meditating, or crying, or laughing or loosing myself in some mindless activity, maybe a movie, maybe go for a very long very fast walk, maybe the gym.
No matter what I do, Monday is going to come.

Feeling great, looking like a cancer patient

Last night when I showed Frank, bald me. He said, 'Now you look like a cancer patient.' The irony here is, that I may look like a cancer patient but I FEEL perfectly normal. I have been doing my usual running around town doing errands, shopping, running down to San Diego to get my wig fitted. Last week I didn't really feel like driving and I had Frank drive me around. 
This week, I keep forgetting that I had cancer. Of course now, my bald head will be a constant reminder.
Here is my take on this: Yeah I had cancer.  But it is cured. I will have some more chemotherapy to sweep out any remaining rogue cells. Then Im good to go, back to my life full force.
In the mean time, I have joined the ranks of people who have experienced cancer. It is an exclusive club. I  plan to take full advantage of my membership. Im looking forward to making friends with my fellow travelers on the road to health, or peace or completion of this life. It's all good. I am exactly where I am supposed to be at this moment in time.
Today: SACRAMENTO here I come!!!
It will be interesting to see if people treat me differently because Im obviously a person being treated for cancer.

Hair today, gone tomorrow

The day all chemo patients knows is coming, arrived for me today. I noticed some hair in the sink. So I grabbed a handful on my head and pulled. Sure enough, it came out in my hand. Tomorrow I leave for Sacramento. I can't leave a trail of grey hair all the way through the airport and on the plane. Decisive action is called for. I had everything in place. I called my wig lady and made an appointment to go down, have her shave my head and style my wig. When she was ready to start she said, 'The best thing is don't look until I get the wig on' 'Heck no', I said. 'I want to watch and I want to video it on my iPhone and take pictures.' How often does anyone get their head shaved? Not all that often. 
Soon the shaver was buzzing off my nice salt and pepper hair. When it was all done, I thought I looked kind of cute. It seems I have cute little elf ears. You wouldn't notice them with my hair covering them. So, it turns out Im an elf or fairy in disguise.

Then she put the wig on and I had to laugh. It looks awful til she styles it. Im still not that crazy about it. But I have laid in a supply of hats and scarves to spruce things up a bit. When I get to Northern California all the girls can get together and figure out how to style me and make me up. It will be a fun project.

At last some good news

Today I had my first visit with my oncologist, Dr Saven since my first chemotherapy 10 days ago. He is pleased with my progress. My blood work is good, which means the chemo hasn't hurt my blood cells. AND the tumor is gone! This is just astonishing to me.! 3 weeks ago I had a tumor the size of a grapefruit in my abdomen. The doctor promised me that the first blast of chemo would blow it away. And it did. Of course it sure didn't hurt that my 35 member family and an uncountable number of friends was praying for me.  There is no need to sort out why the tumor is gone, who did it what did it. The answer is the same. We are all in this big beautiful circle of life. It came from love. My doctor loved me enough to learn everything he could, do research and find the best way to treat this cancer.  My family loves me enough to hold me up to God in prayer day and night. God, has more for me to do. There will be many lessons to be learned from this amazing experience. But for now I can bask in the sense of relief I feel, and the sure knowledge that I will be there when little Baby Binn makes his grand entrance in January. This is the greatest source of joy for me. I will be there when my grandson is born. That is the first promise Dr Saven made to me the day he told me I had lymphoma. Im holding him to it.

C(for chemotherapy) minus 19 hours (But who's counting?)

In 19 hours I will go in to the clinic, put my arm out and let them inject me with chemicals so toxic that they must let them go in very slowly over 7 hours. The nurses will have to take special care not to expose themselves to it.
Ive spent my life avoiding toxic  things. I try to avoid eating food with pesticides, milk from  cows that have been given BPH, plastic water bottles. I could go on and on. Now that I am sick, Im going to get even MORE sick in order to get better. Does this make sense? Does anything make sense in this new world I have entered? How could I grow a tumor the size of a grapefruit in 3 months? Why can I eat almost normally with this thing sitting on my stomach? Ok, I admit, I don't want to eat very much at any one time. How can I feel so well while my body is riddled with cancer?
I could go on.
On the brighter side there are some advantages to having cancer and chemotherapy.
Here is my list so far:
I won't have to wash my hair.
I will save on shampoo and rinse.
I won't have to have my hair cut. I get a wig styled just for me instead.
I won't have to shave my legs, or armpits or pluck my eyebrows.
When I want something I can have it. Who's going to argue with a woman who has cancer??
I get my cleaning lady back!
All my loved ones are praying for me.
I get new toys just because I want them. (Hello iPhone 4S!)
I get to eat ice cream .. no guilt.
I get a therapy dog and two therapy cats at my beck and call.
I get to get closer to God and to his angels. 
The ironic thing is that I usually(but not always) feel pretty peaceful in the middle of all of this.
So all in all this has been a pretty good day.

It's very treatable

Good news,
I finally figured out how to activate the comments. You can now leave comments 
by scrolling to the bottom of each post and clicking on, aptly enough, 'comments.
I look forward to hearing from you!


When someone learns that I have lymphoma, in an effort to reassure me, they quickly say, 'It's very treatable'. Then they usually tell me about someone who had lymphoma and now is fine. Im sure it makes the person who says that more comfortable. They are actually comforting themselves when they say it.  They are reassuring themselves that Im not going to die.  And they expect me to buy into this. Ive been researching Lymphoma. I didn't really want to do it until I had more information. There are statistics that say that 60 % of the people who have it 'do well'. What exactly does that mean? It means that they go through a very difficult period of chemotherapy and their cancer goes into remission. Sometimes it is completely eradicated from the body. Nevertheless they and their doctors have to be vigilant to be sure the cancer hasn't returned.
If it does return its back to chemo. There is also the option of radiation if the chemo doesn't work. But not to worry, its still 'treatable' If that doesn't work there is autologous stem cell transplant. We won't go there now. Hopefully we will never have to.
So, you see with each new development,when you say, 'It's treatable' That means, harsh rounds of chemotherapy when I may feel perfectly awful, or I may not. My hair will fall out, or it may not. I will be weak and tired and have a compromised immune system, or not.
When you reassure me that my cancer is 'treatable' you may not think about what I will have to go through to have my cancer treated.
Im just saying....

Hearts and wigs and apps

 This is the card I made to give to my caretakers. I want them to see the real me. I want them to remember me. And I want them to know they are appreciated. 
First of all, I want to thank all of you for your cards and phone calls and emails. They are very uplifting. Knowing that all of you are standing with me makes me feel strong and safe. I may not always return your calls. But know that I get all of your messages and treasure them.
This morning I went  in early for a sonogram of my heart to be sure it can handle the chemo. The technician was a young woman named Kim. When I walked in the door she complimented me on my little black jacket. Naturally I had to tell her about my Nordstrom's make over with Katie. We chit chatted while she did the procedure. She was impressed by my positive attitude. She said, the ones who make it have a positive outlook. I feel very fortunate that I am adjusting to this life threatening situation and that Im not frightened about what lies ahead. When she finished the procedure she put her arms around me and hugged me and prayed for me. Just my luck to get a Christian therapist!! It sure did feel nice to have someone holding me and praying for me. I gave her one of my cards that says, 'Thanks for taking care of me. You are my angel." I guess they do these cardiograms every three months or so. I hope I get to see her again.
From there I went to a store for women who have had cancer, mostly breast ,to be fitted for a wig. I decided to get the ball rolling so that I will have it when I need it. The lady carefully matched my hair color hairstyle. I certainly don't want to go from silver to black! She tried a brown wig on me because they didn't have the style I want in silver. But they will order it and it comes in the next day or so.  She took a little skull cap made out of panty hose material. When she put it on I got a glimpse of how I would look without hair. Very sobering. The brown wig looked perfectly awful. But she explained that it would be fitted and styled just for me.
It took me most of the morning to do this. I hadn't had anything to eat all morning since I didn't get up in time for breakfast. But I made it home and wasn't starving by 11;30. Thats a big change for me.
When I got home I was reading some of the cancer literature we got yesterday. Guess what! There is a chemo website guide2chemo.com
AND there is an APP for that. Can you believe it? There is an app that you can use to keep track of your appointments. And believe me there are a slew of them. It also keeps track of blood counts, fever, medicine and a detailed log. You gotta love it. BTW its a free app!
One thing I don't have to worry about is the cost of the excellent treatment Im getting. My insurance, Medicare and Tricare pays for everything, even the wig! What a blessing!

Chemotherapy class

This afternoon Frank and I went to a chemo class at the clinic where I will start chemo next week. It was very interesting and very helpful. It gave me a good idea of what to expect, what side effects can occur and what can be done about them. 
On Tuesday I will go in to the clinic and first see Dr Savin. I will get the results of the tests I had this week. I will learn whether the cancer has spread beyond my abdomen. After that I go to the chemo clinic for my first chemo therapy. It is a large room with windows looking out over a golf course with the Pacific ocean beyond. This is where the rubber meets the road. After all this build up Im going to really start being treated for cancer. The way the chemo works with this kind of cancer(lymphoma) is that it blasts the tumor and it breaks up and is excreted by my kidney. They say that the very first chemo will do this. Wow!
It is still kind of unreal to me because I feel so good. Dr Savin said that this is an aggressive cancer and I have only had it about 3 months.  That means I got it not long after Mike died. Even though the doctor  pooh poohed the idea, I know it came from my grieving and my inability to reconcile the tragedy of Mike's life with my desire to help him. My pain curled itself into a ball and lodged in my gut, From there it sent out little pieces of sadness like tears. Time to heal from the sadness. Mike doesn't need me to carry his pain any more. So I will lay it down and take care of me.