December 31, 2010

I laid in bed this morning thinking about 2010. I got through the year, my family got through the year; no thanks to the $#@% cancer. I guess it is true what doesn't kill you will make you stronger. Our family had a tough year but we survived. The little boys seemed fine with everything once I told them I would be okay. That was their only concern. Dylan never wanted to talk about it and he wouldn't ask me any questions about it. He was old enough to better understand the uncertainty of cancer. He didn't ask questions because he was afraid of the answers. We have all breathed a sigh of relief at reaching the end of the year.

I remember telling people. last December, that the chemo would only be 12 days out of my life, no problem. This was naive on my part which was a good thing. It was 2 days of chemo treatments a month but also 2 days of travel, and a week of being sick. I spent a lot more than 12 days throwing up.

A short time ago I was relating one particular nauseating experience to a few people and I was laughing when I was telling the story (it took place on a plane). They both looked horrified. I am glad I can laugh. The experience certainly was not funny at the time but with the passing of months and in better health I can appreciate the experience. I got through it. I got through it. I got through it. That, and my family and friends, is what made 2010 a good year.

Happy New Year

December 22, 2010

Wow, it is hard for me to believe that it has been over a month since my last post. I had good intentions to write what happened at my last doctor's appointment soon after my appointment. In this case it can certainly be said that 'no news is good news'.

My chest xray and abdominal ultrasound came back clean. That is great news. I was expecting good news because I was feeling fine but I was feeling fine when I was diagnosed so 'feeling fine' isn't a good indicator. Dr. Kaplan seemed pleased with everything and since he is the expert I am satisfied with his take on things. My blood work is also looking good.

I did get to see some internal squabbling at work at Swedish Hospital. Everyone has a different take on his/her own specialty. When I went to Seattle Ultasound for my first appointment the technician who did the scan seemed confused about why exactly I was there. She said that since I was just coming off of my treatments that the ultrasound machine probably would not pick up anything significant since it would not pick up one or two swollen lymph nodes but only a large mass of them (the chemo treatments would have killed any large masses). She gave me a full abdominal scan while wondering out loud why I was having an ultrasound and not a CT scan. When the radiologist came in to read the results she told me the same thing. The radiologist said, " I have talked to Dr. Kaplan about this before. I will mention something again in the summary notes that I send to him." I liked both the technician and the radiologist. Both women were very polite and professional but I was feeling confused about why I was there by the end of the appointment. A few days later when I saw Dr. Kaplan I said to him that the technician and the radiologist were confused about why I was there. That set him off on a three minute speech about why he sent me there. I had to laugh (to myself) when he said, 'I have talked to them before about this!" Two different perspectives on the same test. It was interesting to hear both sides. I am supposed to have an ultrasound every 16 weeks but I am thinking every six months may be more appropriate. I will talk to Kaplan about this when I next see him.

So, I am feeling good.

thanks for reading,

November 13, 2010

I have been thinking of this blog for several weeks now, trying to figure out exactly what to write. I know the subject matter just not the exact words to describe my thoughts and feelings. I will try to put all down so it makes sense to someone without cancer.

I leave this coming week for my third round of Rituxan. I also need to have a chest x-ray and abdominal ultrasound done. I haven't had any scans since April and those results showed that my cancer was greatly reduced. I then had two more chemo sessions after that scan and the hope was that those two treatments would be enough to rid my body of the cancer. I will find out if that is true on November 23rd when I visit my oncologist. This date, November 23rd, is significant because it is the one year anniversary of my cancer diagnosis.

It has been a long year.

I didn't want my appointment on my anniversary date but that was how it worked out. I didn't want my appointment at all this particular week but between holidays, work and sports schedules that is how it worked out. It just seems really ironic to me. Exactly one year after my diagnosis I will find out if five months of chemotherapy and seven rounds of Rituxan were successful. It is also the week of my birthday and Thanksgiving.

I don't know about my future birthdays but the first birthday after a cancer diagnosis and treatment is significant. A friend of mine who went through cancer treatments the same time as me had her birthday in early fall. I asked her if she took time during the day to close her eyes, breath slowly, and center herself in all that occurred since her last birthday. She said yes, she had done that, and the day was very emotional for her. I am thinking my birthday will be very emotional for me also. My birthday is after my scan and the day before I see my oncologist. I won't know the results of my scans on my birthday. I will know the results before Thanksgiving. I am hoping Thanksgiving will not be a day of sadness. In my head I keep going back to my first appointment with my oncologist. After he told me my scan results I felt like I had gone to Seattle for a death sentence. I know now that is not true. Lymphoma, nowadays, is often considered a chronic illness because of the advancements in medicine. A person can live many years with Lymphoma. I don't want to live many years with Lymphoma I want to live many years without Lymphoma. My scans will tell me what I will be living with.

What I remember most of my trip to Seattle last year is the darkness of the drive to the hospital for my appointment and the darkness of the drive to my sister's house after my appointment. My appointment was at 5pm so night was already falling. We were at the hospital for a good 2.5 hours so when we left it was even darker. I wonder if I had received good news if the darkness would not have stuck so much in my mind. My appointment this time is at 9am. I hope it isn't a dark day and I can remember more light. Cancer does not just play with your body it also plays with your mind.

I could use your prayers.

thanks for reading

brynn

October 01, 2010

My sister told me I hadn't written on my blog for a while. I checked the date of my last entry and she is correct. I believe that is a good sign. I don't think about cancer every moment of the day anymore. I don't feel sick and depressed on a daily basis so I don't feel the need to write out my thoughts in order to make some sense out of a disease that makes no sense. I have moved on with positive thoughts that my cancer will not return for a long time. I am focusing on my faith, family, friends, work and volunteer hours. My life, for the most part, has returned to my precancer days.

When I say 'for the most part' it means I continue with my every 8 weeks treatment. I just finished treatment #2. I went through the Ketchikan hospital for my treatment this time. It was a first to try out the Peacehealth (Ketchikan hospital) oncology department. Everything went fine. The oncology nurse, Deb, was very nice and did a great job with my IV. I came home with no bruising. That does not happen very often, thanks Deb. The oncology room is an ICU room. It has enough space for three chairs. It is a tight fit. My chair was next to the bathroom and if anyone wanted to use that room she/he has to move my guest chair out of the way.

When I got to the hospital there were two people getting treatment and when they left another person showed up. That would make 4 of us for the day. The usual treatment day is Wednesday but Deb has to schedule any overflow for Tuesday or Thursday. That means the four of us were overflow since we were there on a Tuesday. Deb mentioned that she had another person scheduled for Thursday. I don't know how many people were scheduled for Wednesday but it is obviously and sadly a very busy place.

When I head to Seattle for treatment #3 I will need to do a chest x-ray and abdominal ultrasound, checking for cancer. I am guessing I will be anxious about that because I was feeling anxious about my treatment this past week and I didn't have to do any xrays/ultrasounds. Feelings that I will always have to deal with and work around.

Thanks for reading

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.

May 08, 2010

A beautiful sunny day, perfect for the opening day of baseball season. I will spend a good part of my day with baseball and I am looking forward to the excitement. Both Noah and Bryan are on the same team again and both are looking good in their skills. Dylan will be a base coach. He has already threatened his little brothers with calling them out if they don't fetch his food and drink while he is lying on the couch. The little brothers are smart enough not to believe him.

I have felt good all week. The nausea is finally gone and I have a better outlook on the day to day events in my life. I have had only one other lost dream but it was different this time. When I woke up from the dream I cried because I am so thankful for my family and friends who have held my hand through out this illness. In the dream I was lost either under a house or in the woods (I could never tell which). It was dark and I knew where I was but I needed help and I knew people were looking for me. Every so often I would see a hand come through the branches or foundation and reach out for me. Behind the hand there was always lots of light. I knew that hand belonged to someone trying to find me. When I woke up I knew that hand represented everyone who had given me a hug, words of kindness, gifts, traveled with me or in some way let me know I was in their thoughts and prayers. I tear up thinking about it now. I don't know how people go through illness alone. I would bet research would show that those surrounded by loved ones live longer than those who have to go it alone. Thank you everyone for loving me. I can never express in words how much I appreciate everyone's kindness.

I have even felt well enough this week to begin my research on my choices in the next steps of my treatment plan. I have three choices. The first is to do nothing and wait until I have symptoms of the cancer returning before I begin another treatment. The second choice it to continue my Rituxan treatment. Rituxan is supposed to stop the cancer from spreading. It is a two year plan with treatments every three months. The third choice is between two drugs called Zevalin and Bexxar. Both of these drugs are a type of radio-immunology. It is a week long treatment with IVs' and body scans. It is radiation being sent through your body through the IV and killing any cancer that may be in the body. It is tough on your body. I don't know at this point what may be the best course of action for me. Every choice has its pros and cons. I will talk to Dr. Kaplan more about my choices on my next visit. He has not recommended one choice over the other yet. It gets overwhelming to read and try to decipher all the medical jargon around these choices. I don't have to decide any time soon. The choices that require action would not begin until August or September.

Today I am going to enjoy my boys playing baseball and am looking forward to Mother's Day. I don't plan to do any household chores tomorrow.

I leave Monday for my last round of chemo, yeah! My friend, Tina will join me (thanks Tina). I am looking forward to being done.

Thanks for reading.

May 02, 2010

I feel good today. I woke up feeling good and it has lasted all day. I got several chores done and made a big dinner for the family. The kids were thrilled with the dinner. I haven't made a full meal in a long time and they were all very appreciative of the meal. Noah said it was 'awesome'.

I woke up early this morning and made coffee and then watched the movie Sherlock Holmes. I used to get up on Sundays and watch a movie with a big cup of coffee but I haven't done that in a very long time. It felt good to get back into the pre-cancer routine.

I also enjoyed walking in the sun today. It felt good to tie my raincoat around my waist and not have to put it on for the driving rain and wind. Yeah for a sunny May day (partially).

I was even able to think of my next chemo treatment without feeling sick. I don't dread it anymore. I am looking forward to getting it done so I can be done. It has been a long time since I felt well. Feeling well feels good.


It was just a good day.

April 28th, 2010

In the last two weeks I dreamed three different times that I was lost. In each dream I eventually found my way but I had to do a lot of walking or driving to find my destination. This is the first time in my life that I can recall having a recurrent dream theme. I don't know a lot about dream interpretations but I am guessing that this lost feeling has to do with my life with terminal cancer. So many decisions need to be made with cancer in mind. My last PET/CT scans showed that one of my arteries had more calcification than what is considered normal for someone who is only 46 years old. My oncologist wants to refer me to a cardiologist and initially I said okay but now I think 'why'. The scan didn't show a serious problem just more calcification than normal. That would be a problem if I lived into my eighties but people with stage 4 Lymphoma don't usually live more than 10 years after diagnosis. I would like to get some cosmetic dental work done but I think is it really worth spending the money if I don't live very long?

I know that this cancer will not kill me tomorrow, or next year, or even the year after that but that doesn't mean I won't be back in chemo treatments during any of those times. As Dr. Kaplan told me about chemo treatments "sometimes the cancer comes back in three months and we realize we didn't do chemo long enough.' No wonder I am dreaming I am lost.

I am also dreading my next chemo treatment. I was so sick this time I really don't want to go back and do it all over again. I am still getting queasy when I think of Swedish Hospital. I still haven't done any research on the Internet for my maintenance program options. I don't want to think about cancer treatments. Cancer treatments are making me sick. I was never sick from the cancer.

I need to focus on fun things. I am hoping to have a party in June celebrating the fact I don't have to go to Seattle in June. I am looking foward to Dylan's senior year and traveling with him on some of his sports trips. I am looking foward to watching my boys grow another year. I am hoping that our family will take a trip together during next year's springbreak Hopefully some where warm. Anyone want to go to Hawaii with us?

Thanks for reading.

April 19th, 2010

'Okay, long deep breath, slowly in, slowly out, and again.' That has become my mantra of the last several days. Focusing on my breathing has seemed to help with my nausea. I don't know why this last treatment has made me so sick. It has been six days and my stomach is still not behaving. I have noticed that when I drink coffee my stomach does a turn for the worst and stays that way for the rest of the day. It will be ironic if I have to give up coffee because it disagrees with me. Coffee has been my one food pleasure through all of this. It brings peace to my day, until this week. I like tea and have been drinking more lately but it isn't the same as a warm cup of coffee with a bit of Half & Half.

I have also noticed I am starting to slow down a bit in my work-out routines. Last week I was swimming and stopped for a bit several times to rest. This weekend I was walking up a hill I always walk and had to slow down towards the top. I do realize that I am still swimming and I am still walking several miles at a time and that is a very good thing. It is hard though to see myself slow down. I am not depressed about it and I understand why my body needs more rest. I would just prefer to keep swimming and walking at my same pace.

Anybody want to come party with me in June? I was thinking of having a party to celebrate the fact that I DO NOT have to go to Seattle for chemo. I would also be willing to eat milk chocolate in celebration (dark chocolate isn't my favorite but better for you).

I haven't yet got on-line and researched my options for 'next step' in my cancer treatment. I am waiting for the nausea to go away so I can research without any bias. I can't believe how the nausea can make things seems so bad. I just think of Swedish Hospital and my stomach turns a few flips. I have three choices to pick from and I will discuss those more with everyone when I have a better idea of what each would mean for me. Two options involve more medicine and the third option involves doing absolutely nothing.

Thanks for reading.

April 14, 2010

Wow, I can't believe it has been 10 days since I have posted my thoughts. A lot has happened in those 10 days. First, and happiest, my PET/CT scan came back with very good news. My cancer is almost gone. The cancer is gone from my two bones and my lymph nodes are almost back to normal. I only have to do 5 chemo treatments instead of the original 6 which means I only have one more chemo treatment to go. Everyone say 'Yeah!' I was very happy about the results and I am glad my husband was there to share in the good news (thanks sweetie). It made my having to go through another chemo treatment much easier.

This past chemo treatment seemed harder to get through. The nurses had trouble finding a vein (on both days) for the IV and everything just seemed to take longer. I am also having a hard time with the nausea. Even on my anti-nausea medication I am queasy most of the day. I was sitting on the plane between Seattle and Ketchikan when I realized I was going to be sick. I ran to the bathroom and let me just say NEVER throw up in an airplane bathroom. It is awful.

I also lost my breakfast today between Craig and Klawock. I pulled over quickly and zipped out of the car. This chemo is starting to kick my butt. I am happy I only have one more session. The first night I was in Seattle we drove by the cancer clinic and I could feel myself get queasy. It will take many years for those memories to go away.

I have some decisions to make about what to do after I finish chemo. I have three choices and I need to spend the next month doing some internet research before meeting with my oncologist again and making a decision.

Please pray for a very long remission.

Thanks for reading.

April 04, 2010

It is Easter and time to celebrate the rising from the dead of Jesus Christ. My family drove to Thorne Bay this morning so we could celebrate Easter on board the M/V Christian. A big thank you to Stan and Sharon for being our hosts. It was good to celebrate with family and friends.

I actually had a quick thought of skipping the Easter baskets this year. I had already bought the candy/surprises on my last pass through Ketchikan but I was tired and not enthused about using up energy to pack plastic eggs. We have been trying to keep our kids lives as normal as possible through this cancer thing and so I got up and fixed the baskets. I didn't though find hiding places for all three baskets as usual. I just put the baskets in my closet under some hanging clothes. The kids seemed good with that hiding spot.

I am leaving again this coming Thursday to head to Seattle for my second PET/CT scan. Apparently it is the norm to have a second scan half way through the chemo treatments. The medical staff is looking to make sure the chemo is working on getting rid of the cancer. I am feeling apprehensive about this. Actually, I am expecting bad news. At my first two appointments the news I received about my cancer wasn't good. The first visit, and after my first scan, the oncologist told me my cancer was wide spread. The second visit my oncologist told me the biomarker results showed that I had an aggressive type of cancer. I am thinking that if I just expect bad news then I won't be disappointed. I am playing all the scenarios through my head, both good and bad news. I really want good news (of course). I also don't want to break down in the doctor's office again. I hate cancer. I am glad of prayer.


On a lighter note. I bought a great purse on my last trip to Seattle. It is being shipped to me and I can't wait to get it. When you see me with a floral canvas bag stop and 'ooh & ahh' over the bag, thanks.

Thanks for reading

April 01, 2010

I'm back! And, I am happy to be home. I have been gone from home for 2.5 weeks and it seems longer than that. I did my third round of chemo (more on that later) and then headed to Palm Desert California to rest up, hang out with my dad and my big brother, Peter, and wait for my family to fly down and join us. I spent considerable time in the sun and have the tan lines to prove it, yeah. Before I left on vacation I had read on different internet sites that a person doing chemo should not be in the sun. I was disappointed in that because I was planning on getting heavy doses of Vitamin D while on vacation. When I asked my oncologist (Dr. Kaplan) about this, during my visit, he said I was on a chemo that does fine with the sun, hence the great tan lines.

The third chemotherapy treatment itself went well. A great big thank you to my friend and sister-in-law Rhonda who accompanied me on this trip. Rhonda did a great job taking care of me and taking notes at the doctor's appointment. Thanks Ronda, I love you.

This is a picture of me in front of the Piroshky, Piroshky shop. I had Rhonda take this picture of me for my friend, Frances. I have met Frances only once but our families have been friendly for years. Frances was diagnosed with Hodgkin's Lymphoma just a few weeks after my diagnosis. We bonded quickly due to the fact we are traveling the same dark road. She was the one who gave me the idea of starting a blog for my family and friends. Frances loves piroshkies and often mentions this eating establishment in her blog. I wanted her to know I was thinking of her. Frances, there is a Piroshky, Piroshky shop right next to Swedish Hospital, about 2 blocks from Virginia Mason. It is closer than the shop at Pike Place Market.

At my appointment I mentioned to Dr. Kaplan that I had an issue with keeping food/drink down the first 36 hours after my last chemo treatment so he put me on a stronger anti-nausea medication that went into my body along with the chemo. Rhonda later told me that Dr. Kaplan mentioned that it may cause a headache. I don't remember those exact words but I do remember mentioning that I had not had a migraine since starting chemo in January (it was not unusual for me to get 2-3 headaches a month). I can't say that anymore. I had one of the worst migraines of my life the day after finishing chemo. I started throwing up about 330 pm and kept throwing up for the next four hours. I finally went to bed when my stomach settled down. I didn't take any more anti-nausea medication. I lived with an upset stomach for the next several days but it was better than chancing another headache. I was better after a week.


I loved my family vacation. We spent some time in Palm Desert, Phoenix, and the Grand Canyon. It was sunny for the most part and fun to have some down time in the sun. This is a picture of the four of us in front of the world famous hole in the ground. Dylan didn't come with us. He went on a cruise with some family friends.

I am feeling good from the chemo treatment. I am feeling good about being home.

Thanks for reading.

March 12th, 2010

I am in a funk. I have been in one all week. I am finding people annoying. I am not sure if it is the dark weather, the upcoming third chemo treatment, or what. It probably is a combination of things.

Today is Noah's birthday (my middle child) and he is in Ketchikan for a middle school band fest. I would like him home for his birthday. I miss my kids when they are not around.

I am not looking forward to my third chemo treatment. Chemo is my current best friend and I need to keep a good attitude about that. Chemo will help me live longer. I love chemo, I love chemo, I love chemo. I need to say that a few more times during the weekend so I can feel some thankfulness about leaving my family (again) to go get my medicine.

I am looking forward to spending some quiet time at the hotel. I love laying in bed and watching TV. I consider that to be very decadent behavior. I can watch 'girl' things and no one will complain. There, I feel better already; focusing on fun things.

A friend of mine (thanks Kelly) sent me a gift certificate to Nordstrom. I am also looking forward to heading to their downtown department store and spending it. Maybe some new jammies?

After my two days of chemo I am flying further south to Palm Desert, Ca. I am looking forward to some time in the sun, a pedicure, and maybe a new haircut. I also get to spend time with my Dad. We can commiserate together the effects of chemo on our bodies.

I am tired tonight. I will take a long shower, drink some tea, and find a good book to read.

Thanks for reading.

Sunday, March 7th, 2010

Yummy, I just finished a big bowl of bananas and plain yogurt. I am joking about the 'yummy'. I never thought I would eat plain yogurt but chemo is starting to wreck havoc with my body and I need to compensate. In this case I am trying to rid myself of a yeast infection that has been bothering me for most of a month. I googled 'yeast infections and chemotherapy' and up popped several articles discussing the connection of the two things. I read on a health web site that plain yogurt full of probiotic cultures is a natural way to fight a yeast infection. As I told a few friends yesterday I have been eating plain yogurt like I own stock in the companies. And, I am happy to report that it seems to be working. I know I can get some over-the-counter medicine but I really want to limit the amount of chemicals in my body. Another benefit of eating yogurt is that I am actually starting to like yogurt without any added flavor-go figure.

I also have been dealing with over-dry lips. My mouth, nose, and eyes are not dry but my lips get so dry they burn. I tried different kinds of lip balm but nothing helped. Then I read an article about farmers in northern Minnesota-this is not a joke I am totally serious- using Bag Balm on the udders of their cows (in winter) to keep everything moist and soft. I thought 'Hey, maybe that will work for my lips!'. And, I am happy to report, it works. The first week after chemo I was waking up three times a night to burning lips. Now, I get up only once to put water and then Bag Balm or Vasaline on my lips. I discovered if I put water on my lips first and then the ointment my lips stay moist longer. I have to put Bag Balm on several times during the day. I see people looking at my mouth in a funny kind of way but it is better than the pain I was experiencing.

I made scones this weekend using Agave syrup and whole wheat flour. I also added raisins and pecans. I thought they were good but my 10 year old made up a small bowl of powered sugar and milk and then poured some over his scone. I am trying to get everyone to eat healthier but some of the family are coming along kicking and screaming.

thanks for reading.

March 4, 2010

2 Salmon oil tablets, 3 Enzyme tablets, 1 daily vitamin, 2 glucosamine tablets, 4 calcium + magnesium tablets, 1 iron tablet, 1 cholesterol tablet, and one weekly vitamin D tablet. This is my daily regiment. It doesn't include the every 4 hours anti-nausea tablet I take when I am going through my chemo regiment. Yuck. I remember the days when I didn't take any pills except for an occasional Tylenol. Now, between age and cancer, I have a list of pills to put into my body. I am sure there are a few more vitamins I could be taking but pill swallowing is not a strength of mine. I started out with motivation a month ago by putting all my pills into a weekly pill box. Then I went through my second chemo treatment and the last thing I wanted to do was put anything else into my system. Even thinking of swallowing pills made me nauseas. The other day I had a friend of mine, who is also a public health nurse, mention that salmon oil is an anti-inflammatory agent; those of us with cancer understand the importance of anything that is anti-inflammatory. Anti-inflammatory agents are a very good thing indeed in the fight against cancer. So I thought it was time to get back into taking all my pills. I started yesterday and am hoping for the best. I may have to stop again when I go through my next round of chemo but I don't want to wait so long to get back into the routine.

Yesterday I left work early because I wasn't feeling well. I thought I might be coming down with something. This is a scary thought since chemo wipes out my white blood cell count and my body would have a more difficult time fighting off infections/germs. I took a few Tylenol and spent the evening laying in bed watching a movie. This morning I woke up feeling fine. That was a relief. I worry about missing too much work and maybe not being able to get to my next chemo on time.

It is Thursday evening and I am looking forward to the weekend. I am going to try some sugar-free baked goods this weekend. We have blueberries left from this past summer so I will try some blueberry muffins.

thanks for reading

March 01, 2010

I am feeling good. I started feeling better last Thursday so it takes about a week for the chemo to work its way through my system and then start to dissapate. I am still ready for bed by 8pm but I feel better during the day. I am able to eat again without feeling overfull with only a few bites.

I had another Lymphic massage this past weekend and this time it did not make me sick. I made sure to drink plenty of fluids after the massage and I think this helped to work out any left over chemo effects. I love massage. The one bad thing about massage is that it has to end sometime.

In December of last year I joined a couple of Lymphoma websites. One site has daily email messages with people writing in on different subjects of Lymphoma, treatments, and life in general. One note was from a father who was writing to ask for help with his son. The son is 40 and just found that that his Lymphoma has returned. He was only in remission for 14 months. I have read the statistics and this is not unusual. It makes me think of my own someday remission and how long it will last. We all pray for a long remission and many people go years without a resurge of their cancer. What will happen to me? It would be easy to focus on the negative and wonder if I will be alive for my youngest son's high school graduation. It takes the same amount of energy to be positive and to picture myself holding my grandchildren. I vote on being positive. I usually do this very well. Sometime when I am driving by myself my eyes tear up and I get a bit overwhelmed. I tell my self to 'suck it up and think of something happy'. I have lots of things in my life that make me happy so thinking of something good is easy.
I have noticed that the more I exercise the more I stay positive; yeah for endorphins.

Many people have told me that I am looking good. I believe them. I have all of my hair, my skin color is good, and I feel good (for the most part). Thanks for all of your support.

The second day of chemo is so much easier. It is only 90 minutes from the time I sit in the chair until I can leave. I only do Bendamustine (the chemo) on the second day. The beginning routine is the same. I get a hot/wet towel wrapped around my arm and then the IV is inserted. One bag of anti-nausea and one bag of chemo and then I am out the door.

I am reading a soup magazine in this picture. I know a magazine about soups doesn't sound interesting but it really was fun to read about different steps to get different textures for your soups.





What was fun for this day was meeting up with my friend Tani S. who now lives in the Seattle area. Tani, Susan, and I met up for coffee at the Starbucks located next to the cancer center. We had a great time catching up with each other's families and careers/retirement. We were joined by Bob Weinstein (from Ketchikan) who happened to be walking by the coffee store while we were chit-chatting. It is not difficult to run into Ketchikan people in Seattle.








This chemo treatment has been harder on me. I have had a tough time keeping food/drink down even with my anti-nausea medication. I am hoping it will pass quickly. Last month I only took my anti-nausea medication for six days so I am hoping that is all (if not less days) I will have to be on it this month. I have to work hard to make sure I stay hydrated. I have been drinking herbal tea and it has helped some what. I am still walking my five miles most days and that has also helped. The longer I walk the better I feel.



I head back to Seattle March 15th for chemo on the 16th and 17th. I then get to fly to Palm Desert and hang out with my Dad until my family arrives on the 21st. We will then head to Arizona to see the Mariners play a spring training game and then off to the Grand Canyon.
I am looking forward to some warm sun and vacation time with family.

February 19th, 2010

I am back from my second round of chemo and this time everything went faster, yeah! I didn't have a reaction to the Rituxan this time so that took about 90 minutes off of my treatment time. And, as always, the best part of treatment is coming home to my family.

I had my friend, Susan, take pictures so people who are not familiar with the chemo experience can get an idea of what goes on.

There is a lot of waiting around in the world of cancer treatment. One patient may need more time with her/his oncologist or maybe more time is needed in the chemo chair. This means lots of magazine time, DVD watching, and other quiet activities while you are waiting your turn to see the oncologist and then waiting for the chemo treatment.

This is a picture of me waiting to see Dr. Kaplan, my oncologist. He was running late that day so we had to wait an hour to see him. I do have to mention that Dr. Kaplan sees like a very nice and caring man. We haven't really 'clicked' yet but I think we are getting there.

The next step is heading to the chemo center which is one floor up from the oncologist office. It was another hour of waiting and then I was taken into my room for my chemo treatment. Usually a person sits in a chair and does chemo but this time I had asked for a private room and the only one available had a bed and not a chair. This turned out to be a good thing because I was given Benedryl through the IV, as a standard procedure to help with any possible allergic reactions, and it put me right to sleep.


The first step in getting ready for chemo is having a very hot and wet towel put around your arm to help the veins stand out so the IV needle goes in easier. Many people who have cancer have what is called a port. This is a tube which is surgically placed in the body, usually the shoulder/chest area for blood to be taken out and chemo to be put in. The port stays in the entire cancer treatment and an IV is not needed. I don't have a port so I have to have an IV needle put in every time. This is okay with me.



Then the IV is put into my arm and the Rituxan (an antibody inhibitor-stops cancer from spreading) is started. The Rituxan takes about 4 hours to administer. After the Rituxan is finished I get an IV bag of anti-nausea medicine and then the chemo (Bendamustine) is started. The chemo itself only takes about a 45 minutes to administer.




Since we started the Rituxan at 5:30 pm we didn't leave the hospital until 10pm. We were tired and ready for bed. Here I am waving good-bye as I head out the door. The beautiful flowers are from my good friend, Mindy T. She brightened a very stark room with her pink roses in a tea cup. Thanks Mindy.

February 11th, 2010

I had a bad hair dream last night. I dreamed I walked past a bathroom and happen to glance in and see my reflection in the mirror above the sink. My hair was a mess. I went in to fix it and when I pulled some hair over to the other side I found a big bald patch. I thought, with a gasp, 'I am losing my hair'.

I think I am getting my self prepared for my second round of chemo. I have been thinking about it a lot this week. My good friend, Susan D., will be meeting me in Seattle and we will go through my second chemo round together. Susan lives in Denver and is apparently happy enought to spend money on a flight just to sit in a hospital for two days; a sign of a good friend.

I am trying to think of something fun to do. I need a 'fun thing' to look forward to when I go south for treatment. I am thinking Bellevue Mall and Nordstrom's would be fun. I don't usually spend money at Nordstrom's but I do enjoy walking through there and looking at the latest fashions. I also enjoy going to Costco and looking through all the books' and DVDs'. Any other suggestions? I fly in Monday, have treatment all day Tuesday and only a few hours on Wednesday and then I fly home early Thursday morning.

I got my blood work results back and everything looks good. I am still producing enough white blood cells to fight off infection so chemo won't be a problem.

I will be gone next week but hopefully I can post to my blog while in the hospital. I will see if Susan will take some pictures of me going through the process so everyone can get an idea of what chemo is all about. In my case it really isn't that bad.

Thanks for your support.

February 7th, 2010

Okay, I can do this-eliminate sugar from my diet. I can have a little bit of honey and a few other non-processed sweeteners but no more corn or sugar cane sweeteners. I made oatmeal-applesauce cookies yesterday. The recipe calls for applesauce as the sugar substitute and I used whole wheat flour. I also put in raisins and chopped almonds. They tasted okay but bland. I offered one to Kevin and he put a few peanut butter M&Ms' in his cookie while it cooled. I will probably be the only one to eat these things.

I got my I'm keeping my coffee habit title from my appointment with my naturopath. We were reviewing my daily life schedule and discussing which habits to keep (exercise, water consumption, lots of vegetables and fruits) and which habits to drop (sugar, saturated fats) and when we got to my coffee drinking I cut her off at the very beginning and said 'I am not giving up my coffee habit.' She laughed and said 'Okay.' I admit it. I am addicted to my coffee. I need that warm cup of joe every morning to help give peace to my day. The naturopath-her name escapes me right now-said as long as I only drink a few cups a day that it was fine.

I will also be adding a few supplements to my diet, some magnesium + calcium, iron, and enzyme tablets. She also mentioned a book called Anti-Cancer. I forgot the author but apparently it is a great book for everyone to read. I remember seeing it at Costco when I was south so I will try and pick up a copy next week when I am in Seattle for my second chemo treatment.

February 02, 2010

I feel better today. I was feeling good about life because I stopped taking my anti-nausea medication last Monday. I thought, 'cool', only needed my meds for 6 days. I felt great Tuesday through Saturday. On Saturday I got a great massage. Nahele is my new massage therapist and she did what is called a Lympic Massage. This means she only massaged my Lymph system. It was a new kind of massage that has a very light touch. After Nahele was finished I felt great and we talked about this type of massage helping to clean my system. It must have helped because Sunday I felt nauseous most of the day. It wasn't bad enought to take medication but I laid in a chair with a blanket for several hours just reading a book and napping. I am guessing the massage worked out some more chemo from my system and got things moving again. That is a good thing. I did drink quite a bit of water on Saturday to help flush my system so that probably helped get rid of more poison.
I am going back this Saturday for another massage. This time I will just do a relaxation massage.

I also gave some blood today for more blood tests. I need my white blood cell count taken to make sure I have enough white blood cells to do another chemo treatment in a few weeks. I was supposed to do it last week but there were a few hang-ups. Yesterday there was heavy fog so the clinic won't take blood since there is no way to get it to Ketchikan and then on to Seattle.
I will let you know the results as soon as I know them.

We are planning a vacation to Palm Desert, Ca. and Arizona. I am looking forward to getting some Vitamin D other than in vitamin form.

January 30th, 2010

Hello Everyone,
I decided to go the way of a personal blog to keep everyone informed of how life is going with my cancer and my treatments. It should be far easier than finding the energy to email everyone.

A short history: I was diagnosed with Lymphoma in November of 2009. I had a lump removed from under my arm and the diagnosis came back a week later that it was cancer. I really believed that I just had some kind of infection in my lymph system and it could be treated with antibiotics; no such luck.

I was referred to Swedish Cancer Center and had my first appointment on December 14th. That will be a day forever sketched into my memory. I didn't receive any good news. The cancer was wide spread in my Lymph system and on two of my bones. I was already at stage 4. This isn't unusual for Lymphoma. It is often asymptomatic and it is often caught late.

A person, though, can always count her blessings. All of my tumors were small so no need for radiation and none of my organs were involved. Also, my chemo treatments would only be two days a month so I could fly south for a few days and then fly home.

I had my first chemo in mid-January and all things considered it went fine. I have to do a drug called Rituxan the first day and it takes about 4-6 hours to administer through an IV drip and then I have a 30 minute drip of anti-nausea medication before my 60 minute drip of chemo which is called Bendamustine. On the second day I have to do a 30 minute drip of anti-nausea and then a 60 minute drip of Bendamustine. The first day is very long and the second day is very short.

The best part of my treatments is coming home to my family. I know other people in remote areas have to move in order to get weekly or daily treatments so I am very thankful to be able to be home as much as I am.

I am due back to Seattle in mid-February.

I am feeling good.