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