This is Chrissi s fight through surgery, coming in instalments from her husband. On Sun, Jan 8 Yesterday we received the results of a biopsy that was done on Chrissi and the diagnosis was mesothelioma. Some of you were aware that she has been sick and others are hearing for the first time, her being sick with pneumonia lead to the discovery of mesothelioma. Mesothelioma is a rare form of cancer caused by asbestos exposure. The prognosis was 14 months but we are hoping to extend that time as others have done. Go to the website www.survivingmesothelioma.com and you will see what we hope will be Chrissi's story also. We feel blessed to have the wonderful friends and family that we have who have been supporting us and will continue to do so through this trying time. If you respond please respond to both of our e-mails ( mine is copied on this e-mail), call when you want and if she feels up to talking she will, it is still very hard for both of us to talk about it without getting very emotional. Send us all the powerful energy you can. Latest Update 28/1/2012 Some of you may know that in exploring options for Chrissi we have seen one surgeon who told us that Chrissi would have to have not only the lining of her lung removed but also her lung. Along with this invasive surgery radiation and chemotherapy would be involved and her quality of life would never be the same. The surgeon said this might give her possibly 3 years. Yesterday we saw Dr Robert Cameron at UCLA, you will find a link to information about him below. Dr. Cameron told us that Chrissi is a candidate for a less invasive surgery that would be performed without removing the lung, others who have had the surgery have lived up to 3 to 8-10 years after the surgery. Depending on further testing of the biopsy she might only have to have radiation but there is a possibility if there are more sarcomatoid cancer cells than epithelial she will have to have a special chemotherapy before the surgery. The epithelial cells are the better of the two types of cancer cells in mesothelioma if there is such a thing as better in cancer. We will not know the results until possibly Friday of next week, we will let you know when we know, until then hang in there and think positive. We love you all and appreciate all of the support you have given us. Love Chrissi & Bud http://www.asbestos.com/treatment/doctors/robert-b-cameron.php
Bud contacted me in February and has kindly sent the original emails that started beforehand. Feb 2012 Jan Thank you for sharing your journey, my wife was diagnosed with mesothelioma December 29th and we have been seeing surgeons, oncologists and reviewing a tone of information since then. We are considering surgery with Dr. Robert Cameron at UCLA who uses the cryoablation as a follow up to the surgery. I was wondering what was your experience in March when you went to UCLA for the procedure and why you did not return? Thanks Latest Update Valentines Day Chrissi's biopsy report came back 60% epitheliod cells and 40% sarcomatoid so she will not have to have chemotherapy before surgery!! She has decided to have a Pleurectomy which will remove the lining of the lung and leave the lung. The surgery has been scheduled for March 5th at UCLA with Dr. Cameron. We will not know the time until the day before the surgery but since it is a 7-12 hour surgery it more than likely will be in the morning. We'll let everyone know when we do. We want to thank everyone for all of the support we have received, the hard part is still yet to come so keep it coming!! Happy Valentines Day to everyone. Saturday, March 10, 2012 Where Do I begin I am sorry it has been so long since my last update but if you were here you would understand. Chrissi has been up and down since I updated you last, but so far today has been a good day and it looks like she is getting back on track. She had to have a blood transfusion yesterday due to her blood pressure being to low and being anaemic, she was placed on a nonfat diet because she had to much fat draining out of one of the tubes that are still inside her and her pain medicine was increased. All of the doctors and nurses say this is not out of the ordinary and that overall she is doing really well and that there will be good days and bad days. She is doing everything they ask of her and trying not to get discouraged, neither of us were prepared for what she is going through. I have incredible respect for any of you who have had a spouse or love one go through a major surgery of any kind it is a gut wrenching experience to see the one you love suffer and only be able to do the simple things for them that they cannot do. I stay there as much as possible because it frustrating for her to have to wait for someone to help her when she needs things and by the time I get home I am too exhausted to do anything but I will try to do a better job of keeping you informed because I know what it means to you. She is still very emotional and when she tries talking to anyone on the phone she ends up crying so don't feel bad if you haven't heard from her, you are all in her heart and thoughts. I
read her all your e-mails and she is moved by your kind words and support, she is so humble that she can't believe that you say she is an inspiration to you. I especially like the e- mail where someone said they "wanted a blood transfusion from Chrissi" because she was so awesome. I agree!! Have good weekend, enjoy every minute of your lives and the ones you love. Saturday, March 17, 2012 6:50 PM Out of the Hospital Well Chrissi was released from the hospital day before yesterday and is doing quite well despite dealing with the pain which doesn't seem to be diminishing yet. She is on a total of four medications two of them for pain and one of those is taken every two and a half hours so my blackberry is going off all day and night telling Nurse Bud duty calls. I love it!! At least we aren't depending on the nurses and we are together. Yesterday she had a shower and washed her hair for the first time since the surgery and looks great!! She is still on the nonfat diet and will be for the next three weeks so we are trying to be creative in terms of things for her to eat, at least now she can eat when she wants and it is organic. It is so great to see her out of a hospital gown free of IV's and tubes and not in the hopsital. Monday Chrissi goes for an x-ray at 10:30 and then we meet with Dr. Camerons nurse at 1:30 for the results, if everything looks like it is healing well we should be back in Cloverdale on Wednesday. So everyone keep the positive and healing energy going and have a good weekend. March 23rd Well we've been home for five days now and it sure is great!! Chrissi is getting around really well and healing nicely. Only two more weeks of the nonfat diet, she can hardly wait to have an avocado and some nuts. Our biggest struggle since being home has been our dogs!! They have never really been best buddies but now they can't stand each other and are at each others throats. So far they have not caused Chrissi any undue pain. We went to see radiation oncologist Dr. Marc Fields who is with Kaiser but works out of the Rohnert Park Cancer Center. Dr. Fields has contacted both Dr. Cameron and his radiation oncologist Dr. Selch for more information on the surgery and the protocol used by Dr. Selch when radiating Dr. Cameron's patients. We won't know anything else until later in the week, we'll keep you updated as we move through this process. To all once again thank you for all the support, prayers and positive energy.
Tuesday April 17 th 2012 What they don t tell you Well 6 weeks ago today Chrissi was just out of surgery a few hours dealing with pain and being given at least two different kinds of narcotics to ease her pain. What no one told us was that she would be dealing with this pain for a long time and that the drugs they were giving her would wreak havoc with her stomach and eventually make her go through withdrawals when she did start to cut back on them. Right now she is just not a happy camper and tired of not feeling like Chrissi, what bothers her most about this is that she is really wants to reach out to all of you and call you or return an e-mail but she is just not there yet. She wants you all to know that she is truly moved by the support you have all given her and that what you all have done in one way or another is what will get her through this time. You all are in her thoughts. On a more positive side we saw Dr. Cameron on Friday for Chrissi's follow up visit and he felt everything was going very well in terms of her breathing, healing and how well she moves. We also saw Dr. Selch the UCLA Radiation Oncologist who works with Dr. Cameron's patients so that he would consult with Dr. Marc Fields of the Rohnert Park Cancer Center on his protocol for radiating mesothelioma patients. Dr. Fields will begin Chrissi's radiation on April 25th five days a week for five weeks, once again keep the positive energy and good thoughts coming her way. Chrissi and I also wanted to acknowledge my boss Mike Harrison for being understanding and supportive from day one. I have not exactly been the attendance model lately but he just keeps telling me to do whatever is necessary to take care of Chrissi. Having a free rein to give my wife the support she needs has been invaluable to me as her support system. Well that is it for now, hopefully Chrissi will be off the pain meds in the next two weeks and she will start to feel more like the Chrissi we all know and love. 26/04/2012 Well it took Chrissi crying and yelling at UCLA Dr. Selch's staff to get him to confer with our Radiation Oncologist Dr. Marc Fields and approve Marc's plan for Chrissi's radiation. The plan was approved by Dr. Selch and Chrissi had her first radiation treatment today. Chrissi said that Dr. Fields and his staff were very caring and felt comfortable with everyone. Everyone at the Rohnert Park Cancer Center that we have encountered shows a genuine concern for the patients that come there. Today was huge for us as Chrissi has battled some real demons since my last e-mail but she dug deep and she is on the road back to being the Chrissi we all know and love. When I ask her if there is anything she wants me to tell you once again it is that she hasn't been in contact with all of you to let you know how much she loves you and appreciates you. Your e- mails move her, she continually says she can't believe how caring everyone can be and it usually makes her cry.
Dr. Cameron's office had Kay Gilpatric who was diagnosed with mesothelioma contact me to help her in dealing with the UCLA finance department as I know more about it now than they do now. Over the last few weeks I have been talking to Kay giving her information to help make her upcoming journey a little less painful. I know what she and her family are going to go through and my heart goes out to Kay and her family and I am up at the head of the army of her supporters. Chrissi and I are going to send her all of the positive energy and healing thoughts we can, tomorrow is her surgery and we asking you to join with us and keep Kay in your thoughts and give her strength to get through tomorrow and the days to come. As her journey continues I will update this