Round Five

I am back at the infusion clinic getting my 5th round of chemo therapy. I had a CT scan this morning to get a look at our progress. I was only able to see the images of my lungs and liver. Those images show that the cancer has been reduced in my lungs although they are still a mess. We are a little confused about my liver. There were two spots that my doctor said did not look like cancer and where the cancer spots were listed as being earlier on my liver she could see nothing so has my cancer spread to my liver? We are just not sure. We did not see my colon, where the original tumor is, but my doctor is confident that it will be improved since it is unlikely that the chemo therapy would affect where the cancer has spread and not the original source. It typically affects the original source better than the places it has spread.

My doctor continues to be amazed at how well I am doing. Once again she commented on my full head of hair. (It looks full anyway, believe me, I really have lost a lot!) She said that if I have not lost it all by now I probably won’t! I can live with that. :-) But for those of you who have given me scarves and hats, never fear. Scarves can be worn for fashion purposes and I still need hats to keep me warm because of my cold sensitivity side effect. So they will get used, and have been already. My weight is also up. That made Kevin very happy but I think my weight gain can stop now. I feel no need to gain anymore! Today was the first time I have been to the doctor without oxygen and when they tested my oxygen level it was 99%. 

I have been feeling great. I have been on two bike rides and am completely off oxygen except at times of increased exertion such as during exercise. I may be the only person riding my bike with an oxygen tank on my back but once again, I pride myself in being different!

I wish I had more to report but for now, so far so good! We are looking forward to Christmas. So many people have been so generous with us, making sure the children will have the best Christmas ever. But of course, the true meaning of Christmas is a celebration of the birth of Jesus Christ. I know that He lives and that He is blessing my life every day. He has blessed me with strength through this trial and with many miracles, for which I am eternally grateful. Thank you for all of your prayers on my behalf. My whole family is grateful. Keep it up, because your prayers are being heard and answered! Have a wonderful and Merry Christmas!

Round Four and all is Well

We are back at the hospital for round 4 of chemotherapy. I am once again in my own little private room - I feel so special, the same private room I had the first time we came here, the one right next door to the bathroom, a place I spend quite a bit of time given all the liquid I am getting pumped into my body :-) - and am hooked up to the pre-chemo drugs. These are what are suppose to keep the nausea at bay. As far as I am concerned, I think they are definitely doing there job!

I was able to see my doctor again today. She is truly shocked and amazed at how well I am doing. She was asking me about side effects and as I was reporting how minor they have been when she suddenly realized I still had a full head of hair. She couldn’t believe it. I wasn’t sure how soon I was expected to lose it all but now I know she expected it by now and I still have a long way to go, unless it all falls out at once.

My weight is up (not something I ever expected to be a good thing in my case, but with all my weight loss at the hospital and the fact that malnutrition is a common cause of death among chemo patients, it is a good sign in this case), my oxygen use and heart rate are down. My white blood cell count and platelets are good. Over all, everything is just peachy! After reviewing my labs and talking with me my doctor just looked at me and asked, “Are you sure we are poisoning you?”

I found out that I will not be joining the trial until the chemotherapy fails. Typically with the RAF mutation the chemotherapy doesn’t work as well. At some point they expect the chemo to stop being productive and at that point I will begin the trial. I was looking forward to the trial because it is targeted therapy. The drugs will go after just the cancer cells, not my whole body like traditional chemo, but they don’t want to take me off of something that is clearly working to try something that is only experimental. So for now I will continue the chemo and given that this is round four, after this weekend I will be 1/3 of the way done!

I asked if there is anything I can not do as long as I feel up to it and have the strength and she said no. In fact, regular exercise is very good for me and will help me feel better. So I think it is time to start daily walks again (lets hope for nice weather) and I really hear my bike calling for me. I know I do not have the strength and stamina to off road it yet and I am not up for my 30 mile doughnut run, (probably a good thing since I do not need the sugar) but it would sure be nice to start riding around the neighborhood again and work my way up to longer rides. With the little oxygen tanks I have now I can easily carry one in a backpack on my back. 

Not only have I gone down in my oxygen use, I have found that when sitting and not doing anything to overly exert myself, I can even go without oxygen! As soon as I try to do things that involve more energy (like shooting hoops or playing laser tag - this knowledge is from recent experience) I get very winded and definitely want my oxygen back, but the fact that I can go without it for extended periods of time is really good news.

And the best news of all, the thing that brings me the most joy, I can sleep lying down! I have spent the past week sleeping in my bed with nothing more than my nice fluffy down pillow and I get a full nights rest. 

Well, I just finished with the pre-chemo drugs and will now have Irinotecan dripping into my blood for the next hour and a half. The nickname of this drug is “I ran to the can.” That is almost what it sounds like when you say the name of the drug and it is suppose to give you such bad diarrhea that you are always running to the bathroom. Fortunately for me I have not experienced that. Sorry for all of you who don’t like the gory details, but I just thought I would have some fun and throw that bit of information in there this time. :-)

I hope you all had a wonderful Thanksgiving and are now experiencing all the joys of the Christmas season. I love this time of year.

Our family (minus Xander who was off backpacking with the scouts) 

enjoying a stay at Myrtle Beach last week.

Thanksgiving Gratitude

In the spirit of Thanksgiving, I thought I would recount some of the things I have to be grateful for and to outline for all of those who are not near me, all that is being done for our family so your minds can be at ease that we are being cared for.

Our church has put together a spreadsheet with all of our needs listed. This is sent out to all those who want to do something to help. This sheet includes meals provided to us three times a week (and these meals are always sufficient to provide left overs for the rest of the week), house cleaning every Friday, rides to get my children or me to appointments and lessons, and people sign up and visit me every day. Not only do people visit with me, but they often bring me nice gifts and help me while they are here. Anyone who comes while I am cold sensitive usually gets to help me make some food (it is always nice when they are here around lunch time). Now, let me just note here that that does not mean that everyone who comes to visit needs to bring me gifts and come at lunch time! Should I say that again? That does not mean that everyone who comes to visit needs to bring me gifts and come at lunch time! 

I have a friend who comes every day to help me homeschool my children (and she is usually here at lunch time and also helps me with that, so see, you really don’t need to always come at lunch time).

We have gotten gift cards, cash donations, donations through a website a friend set up, and numerous people have been organizing fund raisers. The generosity is mind blowing.

We have an expert bread maker who regularly brings my family delicious dinner rolls and occasionally cinnamon rolls.

I got a free wheelchair and even people willing to take me for walks to see the beautiful world outdoors.

But, I am also getting stronger and stronger! I just took my kids on a field trip to see the American Indian Festival at the museum and did the whole thing without my wheelchair! Of course I sat down at every opportunity, but I was able to walk around all day carrying my little tank of oxygen set on level 3 while walking and 2 while sitting. That is a big drop from when I came home and was on level 4, which is much more oxygen.

For the past few nights I have slept in my bed propped by pillows and mostly LYING DOWN!! Yes, I have actually been sleeping! It felt so good. I can’t even tell you how happy this makes me. I only cough a little bit now.

I have wonderful family and friends who are willing to spend the time and money to fly out here to visit with me and do what they can to help. (Again, usually making me food.)

I have a chiropractor who has provided me with a juicer and then brings me organic fruits and vegetables once a week so I can juice and have healthy salads every day. He is donating all of this with the help of his other patients. 

I still have hair! But I also have some beautiful scarves and hats for when I no longer have hair and in the meantime, those hats are helping to keep me warm now that it has gotten unseasonably cold for NC and scarves are great accessories whether worn on the head or not.

I am feeling really well. I have had very minor side effects from the chemotherapy and it is clearly working since my lungs are doing so much better. 

Because of Thanksgiving I get an extra week between chemo treatments. I don’t have one this week! Yeah!!! (Can you tell I am really happy about that?)

Friends are letting us stay in their condo in Myrtle Beach during the Thanksgiving Break and a foundation has granted us a vacation that we will take over Christmas Break. (I’ll give more details about that later.)

I learned that they make a little oxygen compressor that I can take with me on these vacations which means I will have unlimited oxygen in a suitcase sized container that I can carry around with me. I was feeling so limited on what I could do because the oxygen tanks don’t last that long and I can’t carry them all with me all of the time. But now that I know about this handy gadget, these vacations will be much more fun.

I have people praying for me in practically every religion and all across the country. This makes me feel really good.

I have friends who have been taking care of my dog for months now. When I was in the hospital, Kevin decided to spend the night there with me and all the kids were off at friends houses and suddenly we remember Sadie! She was home alone and had no way of going outside. We called a friend and asked her to go pick Sadie up and Kevin would be by the next day to get her. Well, she has been there ever since. Of course I miss her terribly and wish she could be home with me, but with a very chewable plastic oxygen cord lying all over the house and people coming in and out every day, I know it is best that she not be here right now. I can’t take her on our usual bike runs and I have no way of getting her the exercise she needs, but what a huge undertaking to take this family member of ours on for such a long time.

We have had people take pictures for us.

People are doing special things for our family for Christmas.

Delicious fruit and gifts and cards arrive in the mail.

People are helping get scrapbooks finished for my children. I did such a lovely job of making a scrapbook for each child every year...until child number four came along. Then no one got a scrapbook any year and Rigel (child number four) didn’t even have one! That will all be remedied soon and he will have documentation that he really was born and did live for the past seven years. Actually, I have done some photo books for the family for the past three years, so I guess we will finally have proof that he lived for those first four years and didn’t just arrive on the planet as a four year old.

When we were denied pharmacy assistance we then applied for the manufacturers assistance for the chemo drugs. We got word from one of them that we have been approved so at least one of my four drugs will be free. Hopefully we will hear from the other companies soon. 

Okay, I know I am leaving something out. There has just been so many things done for our family it is hard to keep track. Thank you to everyone who is helping us, praying for us, encouraging me with cards or posts on Facebook. Every little word or deed you do makes a difference and we can’t thank all of you enough. It is a crazy journey we are on right now, I am just so glad I have all of you to walk beside us as we go.

Happy Thanksgiving

A fun little Kevin creation from last Thanksgiving

The End of Round Three

Round #3 is over. Kevin successfully removed the needle once again and I didn’t even start to pass out this time. It is always such a relief to finish, though. I don’t really like carrying around chemo drugs and having them pumped into my body. But, I can’t really complain about the side effects. I have noticed more tingling in my fingers which is helping me be much more careful about touching cold things. It feels strange to sit and have people serve you when you are otherwise perfectly capable, but you just can’t touch anything cold. Since most everything comes out of the fridge, that means I am not very capable of preparing my own food. Luckily I have people around to help me with that.

Right now my Uncle Ivo is in town which is very nice and he has been able to help me out during the day while Kevin is gone or when I come home early from church...But other than my cold sensitivity and tingly fingers, feeling a bit more tired and a general icky feeling, I really have nothing to complain about. I have been handling these treatments quite well and hopefully will be able to continue to do so.

I will get a bit of a reprieve for Thanksgiving. My next treatment is suppose to be on Thanksgiving but nobody wants to work then so I get to wait until the following week for my next treatment. That will be three whole weeks between treatments. I ought to be feeling pretty well that week.

Then, on Dec. 18, the day I have round #5 I will also get a CT scan so we can see how these treatments have affected the cancer. It has clearly done something to the cancer in my lungs since I am coughing a lot less. I feel pretty confident that the day is not too far away when I might actually be able to sleep lying down.

I have switched to smaller oxygen tanks. They don’t last as long as the bigger ones, which is a little sad, but they are so much more convenient since they are small enough that I can carry them in a little bag on my shoulder. Rather than give out a continual stream of oxygen, these only put out oxygen when you inhale, therefor you don’t use as much and can have a smaller canister. The fact that I can use this kind is also good news because it means my oxygen needs are not so high that I have to have the continual stream. So all in all, I think things are going well. My immediate goal was to get the cancer out of my lungs so I could live a more normal life, it seems that we are moving in that direction. I thank you all for your continued prayers and well wishes. I know I have been blessed and I am incredibly grateful.

It has been a fun couple of days with my two friends, Carma and Stephanie, visiting from Utah. We have been the closest of friends since Jr. High. We took the kids for a walk at Lake Johnson, my favorite place in the Raleigh area. Wendy, who has been providing my dog Sadie with a vacation home since I went into the hospital, agreed to bring her along. Lake Johnson is a beautiful lake with a 3 mile paved trail and some REALLY BIG hills.  I thought we might only be able to walk the flat part, but then we decided to give Sadie a chance to show just how tough she really is. Sure enough, with her help (and a lot of pushing from the humans) we made it around all three miles and up all of the hills!

 Like the luscious lips?

Go Sadie! Pull!

Back at home we dressed in PJs and made our favorite oatmeal raisin chocolate chip cookie dough to eat while watching a movie and having a sleepover. Just a little reliving of our younger days. (I promise, that one bite of dough is all I had. But I don’t think sugar affects you when it is eaten with good friends.)

Cookie Dough!!

Now we are at the hospital getting treatment #3. They will have to fly home to their own families in a few hours but for now I have Stephanie to entertain me by dancing to the music coming from my neighbor chemo patient’s TV. (Last time I had a private little room, this time we have a private little curtain.)

Tonight I look forward to my Uncle Ivo making it into town. This is going to be the month of Utah visitors. I will update you later on how the treatment goes this round.

At 8:30 pm last night the little beeper went off on my pump signaling the end of round 2. And yet, it was only the beginning...of the removal process. Yes, I had had those little needles that are stuck in my chest removed before. I was nervous then, too. But that was when I was in the hospital...with a nurse. All went well then and I was very relieved that it didn't hurt. But this time I was at home...with Kevin...who is NOT a nurse. How would this turn out? Can I trust him to pull needles out of my chest? I knew I was feeling quite a bit of anxiety about this moment but I didn't realize just how much until it was all over and suddenly I felt very dizzy and my ears were buzzing and I realized I was about to pass out. I lay down and it went away, I never actually passed out. The fact is, Kevin did a great job. Once again, there was no pain and he did everything just splendidly. And yet, I am still not looking forward to doing it again in round 3.

Round 2 went well. Once again, no real bad side affects. I felt a little out of sorts last night, but nothing major. However, this morning I noticed quite a bit of extra hair in my bath tub. And then when I combed my hair, definite loss. So those of you who have promised to keep me beautiful when bald, it may be time for you to get cracking on those scarves and hats and such.

Today I went to church. It was my first big public outing. It was also the first time I have been to church in MONTHS. Even before going to the hospital I was coughing so much I couldn't go. Since I was going to such a public place I had to wear a mask. Here is a picture of me sporting my little mask with a smiley face. Then I thought I would include one without the mask, just because I think I look better without it. How vain is that?

  Yes, there is a smiley face on that mask. I wouldn't want people thinking I was frowning under there.

It was nice to get out and see people and actually be there at church. I am grateful that things have gone as well as they have. I have gotten much stronger since I have been home. I was able to walk into church and had no problems. I will still need my wheelchair for longer journeys, which I still would like to take, but the fact I was able to walk as far as I did makes me very happy. I know it is because of all the prayers you have offered in my behalf that I have been so greatly blessed. Thank you. When I went to the hospital to begin round 2 and said that I hadn't experienced any side affects from the first round, everyone was amazed. Apparently many people do. And now having done so well with round 2, I know I have been blessed. God does hear and answer your prayers and I know you have been praying for me so I just want you to know that it has been working. I know I am not going to just breeze through all of this. There are going to be tough days ahead, I have no doubt, but I will take each good day I am given and be thankful.

There was one more piece of good news that I completely forgot about during my information dump last night. There is currently a research project studying the mutation in my cancer and it has clinical trials. My doctor is signing me up to join the clinical trials. I can't start now. I can't remember exactly when she said I would start, perhaps after they evaluate things in December. But she is signing me up right now because space is very limited and she wants to make sure I get in. This will provide me the opportunity to take the drugs they are working on to target this mutation and it will hopefully have more success than the other chemo drugs have had in the past.

(Hopefully this post will be easier to read. I didn't just discover paragraphs, I just discovered how to keep them in my post when blogging. I promise, I really did put in paragraphs with new topics on my other posts, I just posted in the wrong place so they disappeared when I published.)

It was a big day today. We started out in the lab to get the port accessed and some blood drawn. Then we met with my doctor for the first time. Of course I saw numerous doctors while in the hospital but they were only assigned to me while I was an inpatient. My doctor seems really nice and I will look forward to getting to know her pretty well as we will be seeing each other often. 

Some more test results had returned so we got a little bit more news about my cancer. Unfortunately it isn’t very good news. It turns out my cancer has a BRAF mutation. This is apparently the cause for the strange way in which it is infusing through my lungs. But this mutation makes it so that the chemo drugs are not as affective and it cuts life expectancy in half. She said that the average stage IVb colon cancer patient lives about 2 years so one with this mutation has an average life expectancy of 1 year. One year is longer than I was expecting to have anyway, so I guess that part isn’t too bad. But we all know I am not one to do things the average way so who knows how I will decide to skew that average. 

Another little tidbit I learned is that little ‘b’ after the IV. If you have stage IVa cancer that means it has only spread to one other place and is therefore considered curable. If it has spread to more than one other place then it becomes stage IVb and no longer curable. We already knew that this was not curable so that is no big news, I just didn’t know there were different stage IV varieties so I found that interesting.

In December they will do another scan to see how the chemo therapy is affecting the cancer. The doctor has hope that we will be able to get rid of enough of it in my lungs that I will eventually get off the oxygen. That would be wonderful as life will be much more normal and enjoyable without that hinderance. I was also able to see the PET scan of my body. That was fascinating. My lungs really are a mess! We also confirmed that the plan is to do 12 treatments. That means six months of chemo every two weeks unless changes need to be made prior to that.

After meeting with the doctor we went to the infusion clinic where I began my 2nd treatment. We had a nice little private room with a television and access to snacks and everything just like when you stay at the hospital. It took 3.5 hours to get my first 3 drugs and then they hooked me up to a pump that has my fourth drug to bring home with me since it takes 48 hours to infuse. I will end Saturday at 8:30 pm. So far I am handling the side affects well again. I did get terribly hot and was sweating, which I am sure I did last time, too, but since I was terribly hot the whole time I was in the hospital (we assumed due to my respiratory stuff going on) I probably didn’t notice any difference. But I figure I can live with that side affect and actually next time they are even going to give me a drug to counter act that one. Not that that is so bad it needs counteracting, but that is just one symptom in a class of symptoms so to make sure I don’t experience some of the other more unpleasant ones (relating to the bowels, in case you wanted that little detail) they will go ahead and give me the drug.

While I sat and watched HGTV, Kevin got to run around the hospital delivering paperwork. This is where the rest of our bad news for the day came. We applied for pharmacy assistance to help pay for the chemo drugs and were denied. Kevin makes $4,000/year too much. I guess that would be all fine and dandy if it was only going to cost $4,000. So, that was a bit of a blow but I am confident this will all work out. So many people have already been so generous and willing to help us. I am going to continue to have faith that God will carry us through all aspects of this experience.

I guess that is it. So far, so good with round #2!

Hello! I hope everyone is having a lovely day. So far so good for me. I am still feeling much the same, no real side affects, my energy level is good, I’m eating well and all is happy in the Greenwood home. Yesterday I was brought a wheelchair complete with seat cushion and backpack for carrying oxygen. Yes, there is no end to the wonderful things people are doing for me. So last night we took a little stroll through the neighborhood. It was really quite fun. Now I am looking forward to getting out and seeing some of the fall color. For those of you who have not seen me, I can walk. That is not the problem. It is just that I am not able to walk very far. When I was in the hospital I would take walks with the nurses and at first I did really well, but as time went on, my oxygen level would not stay stable when I walked very far at all so it got to where I couldn’t really go for walks. At home I am up and about, tethered by my oxygen cord which seems a bit like a leash, but it is really long so I can go pretty much anywhere. But to go out into the world, it is better to have a wheelchair so I can go farther. I have reached my nadir, which is the time when my immune system is at its lowest. I don’t feel any different, so that is good, but it means I have to be extra cautious about keeping germs away. This Thursday I go back to the hospital (as outpatient) to get my next chemo treatment. Now for something I could use some help with. We have received lots of delicious treats and enjoyed them very much. My kids were worried that I was going to get mad at them for eating so much sugar. (I am usually pretty strict about their sugar intake.) I assured them I would not, I figured they probably needed a little extra love and attention at this time and what makes you feel better than delicious treats? But now, the mother in me is taking over. I think they have had their fill of sugar and sugar is actually not good for me right now. Cancer feeds on sugar. In fact, that is how they find the cancer in your body. They send a sugar solution through your body and then see where there is lots of activity. Since cancer is more active than regular cells and since cancer thrives on sugar, the places that light up on the scan are the places where there is cancer. My goal at this point is to not feed the cancer and to nourish my immune system which means eating lots of fruits and vegetables. I know how much the giving of food is a sign of our love and affection in our culture and I do not mean to stop that. If you want to bring me tasty treats, how about strawberries, blueberries, raspberries, spinach, carrots, broccoli....anything I can juice or make smoothies out of. My kids LOVE fruit. It is quite a chore keeping a pint of blueberries or strawberries around longer than 5 minutes once it enters the house. I have two children who eat a minimum of 1-2 apples per day. (Brynn likes red varieties, Rigel likes Granny Smith) I can promise you we will feel the love if you bring us fruits and vegetables. That’s all for now. I will let you know how things go on Thursday! Thank you and I love you all.

I know people want updates. There isn't much new to say, however. I am doing well. I am not tasting the same so my days of eating for pleasure seem to have come to a halt for now. But I still have a good appetite so eating itself is still on. Most of the drugs I take these days is just to manage my cough, which is quite annoying. But I would rather be taking cough medicine than medicine to combat other side affects I could be experiencing. So, all in all, not much has changed. I am still well, still coughing and still enjoy hearing from all of you.

I'm home! I must admit it does feel good to be here. After 3 weeks in the hospital I was a little nervous about coming home but so far so good. Thanks to Suzie Ellett for coming to the hospital and giving me a new hair cut. I haven't had my hair this short since 9th grade but since this seems to be a time of new experiences, why not go for the drastically different?

I thought for those of you who might be interested in the more scientific side of things, now that we know what my treatment is going to be I can share it with you. My treatment regimen involves three chemo drugs and one to just help one of the chemo drugs. I start with Irinotecan (Camptosar). It infuses through IV for 1.5 hours. After that I get Oxaliplatin (Eloxatin) and Leucovorin simultaneously for 2 hours. The Leucovorin is the non chemo drug used in combination with my final drug which is 5-Fluorouracil (Adrucil). The 5-Fluorouracil takes 48 hours to infuse by IV. For this first round of therapy I am at the hospital for the duration, but for all subsequent therapies I will come get the treatment and go home while still receiving the 5-Fluorouracil on a pump. These drugs will be repeated every 14 days. Everything went well last night. Right now I am in the first 24 hour stage of my final drug. I am expecting to go home on Saturday. Hopefully they will have my oxygen all worked out for my home by then. It would be difficult to go home if I don't have oxygen to breathe! Because of the way the cancer has spread through my lungs (in a very rare way, I might add. The doctors said they could only find a handful of cases where colon cancer has presented in the lungs in this particular way.) I am dependent upon oxygen to breathe. I think that is about all for now. I hope that satisfies the curiosity of a few. (I know most don't care about that technical stuff, but I know there are enough of you out there who are interested that I thought I would share.) Have a lovely day to you all!

It has officially begun! I am now hooked up to the drugs. I am expected to be in the hospital until Saturday. I am sure my visit from Sally, who has kicked the behinds of two different cancers, will give me that extra fighting power.

Fundraising Information

If you would like to assist the Greenwood family with their medical bills, please see the information below!

Update

Photo by Leah Watkins

Michelle Greenwood was recently diagnosed with Stage IV colon cancer.

Tomorrow, (Wednesday, October 15), Michelle will begin aggressive chemotherapy treatment at UNC.  After undergoing this treatment, she will return home.  The doctors are unsure of how many more days she will spend in the hospital, but they are estimating about 3 more days.

A big thanks to everyone for your love, support, and prayers.