Goings On

Well it is about time we did an update. Mom is doing ok. For the first several days she pretty much slept all day. Then came the nausea, dizziness, and lack of appetite. She has a metal taste in her mouth most of the time. Bonnie has only really been able to drink water because nothing else tastes right. She can't have anything cold or frozen, even to the point of water that was in the fridge. Everything has to be room temperature or warmer. Certain smells just are too strong to handle, the ones we have found so far are bacon and seafood.

She is now having insomnia during the night because of the medicine, she gets to sleep off of a sleeping pill but when it wears off she is wide awake. She is reading a book at night to try to pass the time.

We have to be really careful with germs and bacteria so there are several precautions we are taking. We found out that fresh fruit or vegtables are probably not a good idea, due to the bacteria possiblities. We have a bottle of hand sanitizer at the front door, since hands are what usually spread the most germs. Also we are going into church once the opening song has started and leaving during the closing song so there is as little contact as possible, same thing goes with hand shaking, so please don't think we are being rude we are just trying to be very careful.

Any questions let me know I will answer them in a different post.

the picture is from the valentines dance at the stake the saturday before chemo.

First Chemo round

Today was Bonnie's first Chemo round. They got there at 11 and started the medication. When they put the needle in to the port she said that it hurt. Our best guess is that it is due to the area around the port still being bruised. She had one bag of anti-nausea medication(palonosetron), then 2 different bags of Chemo solution (Leucovorin Calcium & oxaliplatin) that was pumping in through the IV. They also sent her home with a pump that will dispense the 5FU(Fluorouracil) over the next 48 hours. She carries it around in a small bag with a belt (like a fanny pack).(I know, we wish the red blanket were Aggie Navy Blue)

I got there around 12:45 and she was about half way through the treatment. I came with lunch and mom and dad were hungry by the time I got there. We were able to chat for a while, and I got to check out the facility. It was pretty nice, everything was very new. The Huntsman Cancer Center on the new Intermountain Medical Center campus is one year old. The other buildings on the campus including the hospital are 2 months old.

About 2:15 the doctor came over and spoke with us. We were able to ask all the questions that had been written down, and several more I came up with on the spot. He said that he believes she is only a stage 3 not stage 4 like the surgeon thought. (we thought the books about cancer backed up his belief)(he is going to check into why the surgeon thought it was stage 4). He also told us that it is possibly hereditary and wants Bonnie to get genetic testing done to find out if it is or not. The doctor wants her to go to a radiologist to discuss if she should get radiation treatment as well.

He said that even though she does not have any markers (measurable tests) for cancer like blood levels or etc, they will always check for that because if the cancer starts up somewhere else, it could trigger a measurable marker to show. He thought that she should not get any mouth sores from her treatments (we'll see, I guess). He thought her most bothersome affects would be sensitivity to cold and tingling fingers/toes. They would probably have to discontinue one of the drugs that causes the tingling after about 8 treatments so that it does not have life long affects.

The tumor board has not discussed her case yet. So he hopes to do that in 2 weeks when they meet again. I am not sure what that will actually tell us. He will also work up the percentages of recurrence that he did for himself but not for us when we met the first time. He gave us a form to get a 6 month handicapped placard for easier access for Bonnie.

Tonight Bonnie has had a headache like a migraine (which she used to get) and was nauseous, she took some Tylenol and some anti-nausea medication. She also was tired starting at 7 tonight, probably from having a long day. See new pictures below also.

(added to by Kevin)

Bonnie’s Purple Heart

Yesterday Bonnie went in to have a port implanted in her upper chest so the Chemo can be easily given. We got there about 10 and filled out another medical history form. (you would think that they would make one available for all to see in their system).

They took her in at 10:15 and prepped her to go into minor surgery to insert the port implant. They gave her an I.V. for fluids including an antibiotic and to put her out enough to not feel the surgery.

They showed us the port they were going to implant. It was about a 3/4-1 by 1/2 inch purple heart shaped implant that had a small tube that was to go up 2-3 inches toward her neck and then would be inserted into an artery and go back down toward the heart another 2-3 inches. This is all under her skin of course. See the link for some info on the port.

http://www.crbard.com/news/innovations/PowerPortImplantedPort.cfm

They can give her all her Chemo and take blood for tests and administer contrasts for scans and even do transfusion if needed through the port.

They said she would be gone for an hour to do the 20-30 minute procedure. She was gone for an hour and 50 minutes. She said it took a while before they even got started and a nurse said she kept asking for more pain meds. She doesn’t remember that but said she was awake and aware of quite a bit of the procedure. They brought her a sandwich and chips for lunch while she recovered and we left at 1:50. She is very sore today around the neck area and says it feels like it did when she had her thyroid surgery. It is also black and blue today. As a side note. Apparently those who have had thyroid nodules (benign or malignant) are more likely to get colon cancer at a later time.

She is scheduled for her first chemo treatment (FolFox) Tuesday at 11 that should take about 3-4 hours. She will have a pump put on the port that will administer the 5FU drug for the 48 hours after she leaves the cancer center. We are hoping she doesn’t get too wiped out after her treatment and the next one 2 weeks later so that we can still go to New Mexico on March 12^th. But we will have to see how she is feeling as that gets closer.

She wants to thank you all again very much for your generous acts of kindness and cards and comments and food. It is very much appreciated. It is great to have such tremendous support during this trying time. Thanks again.

The Oncologist Appointment

We saw the oncologist today; well first we saw a cancer treatment advocate, then the doctors’ physicians assistant, then the doctor. These are some things we learned.

The cancer numbers indicator from the CEA (carcinoembryonic antigen) blood test shows normal levels for Bonnie. More information here.. http://www.webmd.com/cancer/carcinoembryonic-antigen-cea

She was checked twice, once at the colonoscopy on January 16 2008, and once before the surgery on the 22^nd. The first one gave a result of 1.0 and the second one a 0.9, below 3 is normal. So the type of cancer that Bonnie has does not have a measurable indicator. Which means, as I understand it, that we never know if it is all gone or comes back unless it shows up on a scan (CT/PET) or some sort of x-ray or ultra sound or going in to check. The first place it should show up is in the liver since that filters everything in the body and should pick it up first. But the one scan she had showed no problems in the liver. I like that news. I would want them to do another scan or two to verify the liver is still good. But, they don’t think that needs to happen at this time.

The Dr. said the colon resection went well and it had ‘clean margins’ as he called it meaning the surgeon felt along the colon on both sides of the tumor/growth and that he felt the cancer was contained to that section that was removed and the ‘clean margins’ meant that the resection was done without any cancer still being present. They did say that she is basically now considered disease free/cancer free because the cancer was taken out with the surgery. And what may be left is not detectable, so they say she is cancer free. But, since there was malignancy in 18 of 25 nodes that they removed, they want/recommend to do chemotherapy treatments to make sure it gets knocked out. He said the surgeon would have felt along the rest of the colon to see if there were any other growths and there must not have been any.

He made a drawing for us (see picture) that showed how the growth had started and grown into and outside of the colon until it blocked the colon 90%. When it starts going outside the colon it can get into the lymph nodes and/or the blood vessels. Hers did affect the nodes of course. Then it would spread to the liver, then lungs, then bone. So far so good along those lines I guess.

They are recommending a course of treatment called FolFox, check the WebMD link (Colorectal Cancer Health Center link at the left) to find out more about these terms. It would be administered through a tube inserted into her upper chest into a blood vessel where the chemo (oxalapletic?) would be inserted over a 3-3 ½ hour period and then a pump would be connected that would administer more treatment (5FU) over the next 48 hours. So she would have to go back 2 days later to get the pump removed. The treatment would be repeated every 2 weeks for 12 treatments which would take about 6 months to complete. It will be a long and tough process ahead still.

The side affects of this would be that she would be very fatigued starting the night of treatment and lasting a few days and slowly getting better until the next treatment 2 weeks later. Her immune system would be highly affected (wiped out) so we would have to be very careful not to expose her to germs/bugs/viruses/etc. He said to have hand sanitizer in the house for all to use. He said hands spread the most germs. If anything causes a temperature of 100.5 then they would administer antibiotics. Lastly, she would have neuropathy, meaning anything cold ingested or touched would feel like she was getting electrically shocked. So wear socks and drink room temperature drinks and she will learn other things to avoid. Then there can be tingling in her fingers and toes that should last a little while and if it continues they may need to reduce some of the meds in the ‘recipe’ as he called it that make up the chemo treatment. So you do not see a side affect of hair loss, that does not occur with this treatment apparently and she is happy about that. And there shouldn’t be a lot of nausea either.

Since there are no test indicators of her type of cancer the prognosis of it returning/recurring is not known (as I understand it, even though we did not ask that question). So if one were to have a NON-recurrence percent of 50% the treatments could improve that an additional 15% to 30% (65%-80%). If the NON-recurrence rate were 65%, it would help it to improve to 80%-95%. I guess annual or bi-annual colonoscopies and scans would have to be taken to try to see anything.

We setup to get the line inserted on February 15 and to have the first treatment on the 19^th. We have to work around our trip to Los Cruces NM on the 12^th of March for the WAC Basketball tournament (go USU AGGIES!). And then our trip to Yellowstone in May also has to be worked around. We are looking into getting a second opinion and also checking into having treatments at the Huntsman Cancer Institute instead of the Utah Cancer Specialists. So the dates may change if we change courses/groups of treatment. Stay tuned.

We feel like maybe we have experienced a minor miracle here and credit you for your fasting and prayers and prayers and prayers. This has been a roller coaster of a ride but hopefully things smooth out from here and we can knock this out.

Thanks again all for your many kindnesses and thoughts/comments.

Love the Rawlings

Whats New?

We went to the surgeon's office today and the 19 staples were removed. It hurt just a little. The scar looks pretty good. He wants to see her again in 3 weeks. Her pain levels were better today until she dropped something on her stomach. So we hope that improvement continues.

Bonnie has an appointment with the Oncologist on Wednesday morning and we hope to have more information and some indication about what the next steps will be after that. We will keep you posted, pardon the pun.

We want to thank you all for the kind words and emails and comments on the blog and cards and calls and food and flowers and snow removal (a lot of snow this year). They are really thoughtful and inspiring and very encouraging. Thanks to you all. You may want to leave some last names because sometimes it is hard to figure out who says what, with so many people responding and so many friends and relatives. We are feeling strength from your fasting and prayers and encouragement.

We really like this blog too, because it greatly reduces the amount of times we have to repeat the same information. Please don't be offended if I respond to a question by asking if you have read the blog. It helps to make our lives easier too.
Until next time...