Sunday, August 29th

I was at a social gathering a few weeks ago when a woman (who shall remain nameless) came up to me and asked how I was doing. I replied I was feeling fine and everything was going well. She then said to me 'you are looking better now than before you knew you had cancer.' I just thought, 'what the hell are you talking about?' This is the second time this woman has said something stupid to me. This past spring she came up to me to ask about my cancer because she has just heard about the diagnosis. She asked me exactly what my kind of cancer was called. I told her Follicular Lymphoma and we discussed treatments for a short bit. She then repeated the name of my cancer and said to me, 'well, at least you got an interesting sounding one.' The first time I just looked at her and said 'hmm' and the second time I think she noticed the look on my face because she started to explain her statement. I just gave her a half a smile and didn't say anything. She smartly walked away.

Sometime this past spring this exact topic was discussed on my Lymphoma website discussion board. Every one was chiming in with different statements that were said to them that should never have been said. I understand that it can be difficult to think of something appropriate to say when you are in an unusual or uncomfortable situation. Here are some things I have found helpful and not helpful.

Helpful:

• I am sorry to hear of your cancer
• What do you need?
  
• How can I help?
• I will call at different times and see if you need anything
• How is your family dealing with all this?
  
• Do you need mileage, cash, someone to travel with you, a ride, your house cleaned (naming specific things)?
• This totally sucks
• I will pray for you and your family
• I will call people for you
• You are looking good
  
• How are you feeling?
• Weekly mail from friends just checking in
  

Not Helpful:

• Well, at least you got an interesting sounding one
• Tell me about the cancer and the possible outcomes (especially during the first month, it was too new and too upsetting to discuss with everyone)
• Well, maybe it will help you lose weight (why do people think it is ever okay to comment on peoples' weight?)
• Call me with updates I don't like email
  
• You could die from cancer
• Call me if you need anything (too general, chances are I am not going to call)

The majority of comments have been helpful and appreciated and I thank you for that. It has been only a few people who have made not so great comments. I have learned a lot about what should be and should not be said and it will also help me with others in a similar situation.

Thanks for reading

Saturday, August 14th, 2010

I have been recently asked (several times) if my cancer is gone now and I have truthfully answered 'I don't know'. When I had my last scan in April the cancer was greatly reduced and at that point Dr. Kaplan told me I only needed two more treatments. I didn't have another scan at the end of treatment so I don't know if all the cancer is gone. At this point I consider myself to be cancer free and I pray for a long remission. The Rituxan maintenance program I have started is supposed to keep the cancer from growing or spreading. It has a 50% success rate which, as Dr. Kaplan told me, is considered a good percentage in the world of cancer care.

I had my first Rituxan treatment last week in Seattle. I sat there letting the I.V. drip for almost four hours. I could tell I was losing patience with sitting for that long while being hooked to a large machine (the IV and its pole). I even have to roll the pole with me to the bathroom. This last time I had two nurses hook up my I.V. and medication. The first nurse put the I.V. into my arm and started the bag of saline solution. The second nurse came in and hooked up and started my bag of Rituxan. I laid there for a while and decided to go to the bathroom. When I got up from the chair I noticed a puddle of water on the table that is attached to the chair. I wondered what I had spilled and couldn't remember setting anything wet there. When I got to the bathroom I noticed water drops on the base of my I.V. pole. I then noticed that a tube from one of the bags was not attached to my arm and was dripping. I walked back to my chair looking for a nurse, while holding the dripping tube, and had to ring my call button when I didn't see anyone around. The charge nurse, Linda came in to see what I needed. I told her about the loose I.V. drip. She looked at it and said, 'Oh, the nurse forgot to attached your Rituxan to your arm.' My $20,000 bag of medicine was dripping all over the place! Linda went and got my nurse and everyone worked at hooking the bag up and cleaning the Rituxan off the floor, my hand, and the table. I was worried because I know chemo can not touch skin. Chemo is highly toxic and can burn the skin. If you get chemo on your skin surgery is sometime required to repair the damage. I think Linda noticed the look on my face and she said not to worry Rituxan is not like chemo and it won't damage the skin. The nurses also checked how much medicine had run through the I.V. and it was 25cc which Linda said was okay because the first 15 cc of that was the saline solution. The nurse who forgot to attach the tube to my arm felt really bad. She apologize a few times. I was fine with it all as long as I was getting enough of the Rituxan to make a positive difference in my body. The next day I was walking into the living room of my sister's house when I realized I got through a treatment without throwing up. I said to my sister, 'Wow, it feels good to get a treatment and not feeling sick for days afterward.' Some people get side effects from Rituxan but most people do well with it.

I feel good and am feeling happy.

thanks for reading

July 29, 2010

I have often talked through out this blog about how much waiting I have to do when I go to Seattle for treatments. I have to wait up to an hour to see the oncologist and then I go upstairs and wait for almost as long to get a chair in the chemo ward. I see lots of people with cancer and I don't think I have ever seen the same person twice. There are so many people with cancer in this world. I look around the doctor's waiting room and then I look around the chemo waiting room and I see many many people willing to put poison into their bodies in order to live as long as possible. These are people who see value in life. I have talked with a few people about this and I have spent a very long time thinking about it. Ketchikan and Prince of Wales have had a rash of suicides in the last two years. It doesn't matter if the person is young or old everyone feels the sadness over the death. I have thought a lot about this. And frankly, after going through cancer treatments and seeing so many other people going through cancer treatments, I am just feeling really ticked off at people who destroy a healthy body. I know the mind isn't healthy but I am still mad about it. I mentioned to my sister-in-law Rhonda that I know there is a story in all of this somewhere. I just don't know what it would be. When I say 'story' I am referring to a book. It could be based on science fiction or a philosophical book or a non-fiction drama or even a fictional drama. I keep thinking there is a story there.

I think I have been dwelling on this because in two days I leave for Seattle to start my Rituxan maintenance treatments. It is two years of treatments if my body can handle that much antibody. I will see many people working hard to stay alive and I can love and appreciate their hard work and dedication to their family, friends, and self. A co-worker asked me this week if I spent a lot of time depressed because of the cancer. I told her sometimes but most of the time I just feel really thankful for every day I have with my family and that I am feeling good.

I am also going to see a cardiologist when I am in Seattle. I need to do some stress tests on the treadmill. The tests take around 4 hours. I sure hope I am not running most of that time. I am not worried about it at all. It is just for precautionary measures. The one bad thing about the heart appointment is that I can't have any amount of caffeine 24 hours before the appointment. That means no decaff coffee, tea or chocolate, huge bummer.

My family went to the Karta River last week and camped for two days. It was fun and relaxing. We cooked picnic food in the fire and drank hot chocolate and cider the entire time. I took naps during the day and read Janet Evanovich books, my kind of vacation. Here are a few pictures of the family on the trip. We stayed in a Forest Service cabin and Kevin/Bryan spent a lot of time fishing. Noah and his friend, Alex spend most of their time in front of the fire melting poles made of iron. It was a good time all around.

Thanks for reading.

July 10, 2010

Rituxan, that is what I will be doing every other month for the next two years. Rituxan is a man-made antibody that keeps cancer from spreading. I have been doing Rituxan along with the chemo the last several months. The long term side effects run the spectrum. Some people are very ill with it and others have few or no side effects. This drug does lower the blood platelets so I have to be careful to keep germs away since my body won't be as strong to fight infection. Dr. Kaplan told me though that this risk is minimal.

It has taken me awhile to process this new information. I was feeling depressed last weekend but after spending last Saturday dealing with my feelings I am better. I cried a good part of the day. Then I knew it was time to move on and make the best of the situation. Two years seems like a long time to me. I think that is what I find the most overwhelming. Every other month I need to travel to Ketchikan or Seattle for treatment. That is a lot for a person who loves to stay home. I am going to try Ketchikan for treatment and see how it goes. I am a bit nervous about putting another doctor on my team. I have read the research and the more medical providers involved with a person is not a really good thing. Medical providers do not communicate well with each other. I don't want to give up Dr. Kaplan since he is a Lymphoma specialist and knows what he is doing but I don't want to fly to Seattle 6 times a year. I am going to alternate my treatments between Ketchikan and Seattle and if I decide I don't like it then I will drop Ketchikan and just bite the bullet about flying to Seattle all the time.

Rituxan is a one day treatment. The IV drip itself will take approximately 4 hours. The rest of the day will be spent waiting for my doctor's appointment and then waiting to get called in to do the drip. I don't know how this will go in Ketchikan but in Seattle there is a lot of waiting.
I am thinking of buying a very simple laptop that will allow me to watch DVDs' and get on-line.
Both of those things should help pass the time.

I am thinking of starting some kind of support group for people with cancer. I have really enjoyed talking to people on Prince of Wales who have or had cancer. We all know exactly what we are talking about and if one talks about possible death no one says 'oh, you will be fine.' Those of us who live with cancer know that 'fine' is not always the end result. It is easier to be open about our side effects, treatments, fears, and even happy moments. I will pray about this.

Here is another picture from the party weekend. I look at these pictures often because the weekend was so much fun. In this picture we were pretending to show off our 'cleavage' since the infamous black dress has a low neckline.
Thanks for reading.

June 27th, 2010

I did it; I finally emailed my oncologist. Dr. Kaplan asked me to contact him after June 14th about my next step in my treatment plan. I didn't want to contact him at all so I have kept finding excuses to not call or email him. I would love to bury my head in the sand but that won't help keep my cancer away for as long as possible. I gave myself the goal of emailing the good doctor by the end of this weekend. I procrastinated all day. Then I talked sternly to me and said 'Sit down and email the man.' So I did.

I have been doing some research on my next steps in treatment. It all involves more chemicals into my body, yuck. I am going to continue to focus on the positive which is one more week of treatment and then I really am done for quite a while (we hope and pray). I am hoping Seattle will have nice weather in August. I will look forward to sitting in the sun and reading good books.

I had a great party last weekend with family and friends, many from out of town. It was wonderful to laugh with people I have known for so many years. And, I am not kidding when I say we had at least 20 pounds of M&Ms' in this house. Everyone brought M&Ms' and people bought more when they got here. Did you know that the Mars Company now makes Coconut M&Ms' and Pretzel M&Ms'? We had them all this past weekend We also had brownies, bread pudding with brandy sauce, cookies, cake, and numerous other things with a high sugar content. I am now working on my no-sugar diet again. Although I think it is becoming no sugar most days not every day.

The weather for the party was perfect, sunny and warm. We sat outside and I introduced many people to Blueberry Beer. It was a great weekend and I was sad to have it end. Thank you everyone for helping me celebrate a 'no trip to Seattle in June' weekend.

I will let everyone know what Dr. Kaplan thinks would be best for my next treatment step.

This is a picture of me and some of my friends attending the weekend gathering. This black and white dress has a long history among my group of Ketchikan friends. It has been passed from person to person for about 15 years or so. . It was the perfect gift, I laughed and laughed.

Thanks for reading.

May 29th, 2010

"How are you?" I never know how to answer this question. When I first got diagnosed this was a really tough question for me. I remember being at the holiday bazaar in late November and having lots of people asking me this as a general 'hello'. I hadn't yet told any one about the cancer and I hated the question because I had to lie and tell everyone 'fine'. I finally left the bazaar because I couldn't stand hearing that question any more.

When everyone knew about the cancer and asked me that question I didn't want to answer because I didn't want to talk about cancer all the time. Now, my answer depends on who asks me the question. I either tell people I am doing okay and hanging in there or I go into more detail about my sickness from the chemo and Rituxan. The better I know the person the more details I give, usually. I still have to make a quick decision each time I hear that question. I have to decide how do I feel today and do I want to share that information.

I also don't know how to respond when people tell me happily that they are glad the cancer is gone forever. I don't want to go into details about the recurrence rate of my type of Lymphoma (100%) and they really don't want to hear it. I just smile and say something about being glad that chemo is over. I am getting good at general responses.

I did walk almost 10 miles (not all at one time) today for the Prince of Wales Island Marathon. I was on a team of seven walkers/runners. It was a long and fun day. I am thankful to be able to walk long distances. It has only been 2.5 weeks since my final chemo treatment so any distance is great. If you know someone with cancer encourage her/him to exercise several times a week it helps tremendously.

Thanks for reading.

May 13th, 2010

I am done with the chemo. It is such a relief to know that I don't have to go back to Seattle in June. I am having a big party in June, everyone is invited. I am not sure of the weekend yet but it will be towards the end of June.

I will probably have to head south again in July and/or August for discussion and then start up of my maintenance program. Right now the thought is that I will go with the radio-immunology therapy. It is the program where you get radio-active material through an IV. It takes seven days. Dr. Kaplan told me to wait until next month's National Oncology Conference before making a decision. At this conference Dr. Kaplan is hoping updated long term results will be presented from several on-going studies. It will help him help me make a decision.

Right now, I am just happy to be done. I am on a new anti-nausea drug which hopefully will work for me.

I am happy to be home with my family.