It seems that the good news we got from Dr. Nibley has been short lived.
The day after our meeting with Dr. Nibley (Chandy's Oncologist), Chandy and I went back to the same place for a "Breast Cancer Clinic". It's actually a pretty cool idea and a good way for you to get more opinions on your situation and the best options for treatment.
Chandy and I went into a kind of consultation and exam room where we stayed from about 8:30 am to 11:30 am. While there we were visited by physicians and caregivers from all aspects of the care we expect her to receive. They were all familiar with her case and we were able to ask a million questions and I think now we have a good idea where we stand.
The first visit we got was from the main nurse, Barbara. She explained to us how this whole clinic thing worked and then it all began. We were first visited by Dr. Rasmussen, who performed Chandy's mastectomy. He needed to drain the seroma (collection of lymphatic fluid in Chandy's right underarm) and he wanted to talk to us about how things looked. After Chandy took yet another couple of needles he let us know how pleased he was on how the surgery went. It was good to see him and I don't think we'll need to deal with him anymore unless this seroma doesn't go away. A little side note, the nurse told Chandy that she is one of Dr. R's favorite patients. That's because she is just so sweet and can actually put a smile on her face to try and show them the she is brave!
The next visit was from a Dr. dealing with genetics. She went through four generations of Chandy's ancestors to try and evaluate what any contributing factors might be to her situation. It's interesting to see what lengths they are going to with cancer in general and breast cancer in particular to find out every possible piece of information to not only help Chandy but all women in her situation and ways to calculate the risk for them. We already knew that her BRCA gene test was negative but this genetics specialist said that there may still be some genetic influence that the scientific community just doesn't know about yet along with any other environmental type influences.
We also got a visit from a nutritionist. She went through Chandy's diet pretty in depth and gave us a lot of good information on how Chandy's diet can have a great impact on her recovery from any type of treatment she receives.
Next was a certified lymphedema therapist who deals primarily with patients' lymphatic system once they have had lymph nodes removed. She showed Chandy some good excersizes and put some new fancy tape on Chandy to try and get her lymph system around the nodes that were removed to function better than they are. The seroma that Chandy is having drained is partly caused because her lymphatic system in that area isn't working properly in removing the fluid.
An Oncology Social worker was next and it's her job to make sure the patient has a support system around them. She mentioned a number of times how lucky Chandy is to have the family and friends around her who love her and who are willing to help. I couldn't help but think of a person in Chandy's situation who didn't. It would be horribly lonely. Thanks to you all again.
We talked with a Patients Advocate who is a kind of "go between" between the insurance company and all of the care providers and the patients to make sure procedures are followed to the letter to satisfy the insurance company. The patient advocate makes sure that all procedures are preapproved and answers any questions I have. What a relief it is to have this service! I can tell you first hand that the paperwork is not only confusing but overwhelming.
Recently, I talked with my oldest sister Lisa about my own mother's situation with cancer. My mother passed away about 13 years ago after a very difficult struggle with stomach cancer. Lisa told me that she took care of these types of insurance and payment issues for my Mom, after it got to be too much for my mother to handle, and it seemed like a full time job. What a great service for the Hospital staff to provide!
All of this information was great and the health care providers answered all our questions. They were all friendly and made Chandy feel completely at ease.
This is where the tide kind of turned and the information we were receiving, again, wasn't exactly what we wanted to hear.
Dr. Avizon (I'm almost possitive her name is incorrect but I've forgotten it completely) is the radiation oncologist who came next. We weren't too worried about meeting with her because Chandy's breast tissues have been removed, what would we radiate? Well, it seems that there still is a very real possibility that it will be necessary. Apparently there is still some possibility that the cancer could reoccur in her skin or her pec muscles or somewhere in the chest area where it was because the tumor was "intravaneous invasive" (meaning it got into Chandy's veins). The chance is small, but it does exist.
She talked about what to expect along with the sideaffects etc. She also mentioned to us that Chandy's case was presented again to the Tumor Board where there are at least 5 oncologists, a couple radiation oncologists, surgeons, therapists, etc, etc, etc.
The difficult part of Chandy's situation is her age. She is so young that we are trying to make sure she is going to be around for another 50 years. They are completely taking the most aggressive route. The other difficult part of her situation is that she is so borderline in almost everything.
Her stage of cancer was considered stage one except that there were 2 tumors, one of which was barely under the 1 centimeter benchmark, which puts her borderline stage two. The larger of the two tumors was considered Grade 2, which is right in the middle.
This is part of the reason that they now recommend that Chandy have radiation treatment. They are talking about treating her 5 days a week for 5 weeks.
Dr. W, the oncologist was the final doctor to visit us. He was part of the tumor board along with our Dr. Nibley who reviewed Chandy's case. He was great. He talked about the conversations they had about her at this tumor board. He confirmed what Dr. Nibley told us that they still believe that there is a 90% chance right now that Chandy is cancer free. That's always good to hear. He agreed that the Oncotype DX test on Chandy's tumor was necessary and the information it gives them on how aggressive Chandy's tumor is will help them in determining whether or not chemo is necessary.
He did say though that it was the general recommendation of the oncologists on the tumor board that even if this Oncotype DX test doesn't show that Chandy's tumor is more aggressive than they now believe that they would still probably recommend that she have chemotherapy. Again, this is mainly due to how young she is. They're trying to make sure they get it this time.
That dashed some of the good feelings we felt the day before. We should've known better.
As you can imagine, Chandy was a little down. She's a strong girl though and I know that with her support system and her strength she'll be fine.
They did say that they rarely see women in her situation be in as good of health as she is and as prepared to fight as she is. And she's so damn cute (I added that).
We are in Park City right now watching the snow fall. We came up here yesterday to get away and Christmas shop. Looking out the window I'm thinking I should've brought chains.
She's doing great again. Spirits are back up and we are still sticking with our effort to forget about cancer until January 13th when we meet with Dr. Nibley for the results of the Oncotype DX test.
She'll post soon.
G
Saturday, December 13, 2008
Wednesday, December 10, 2008
Christmas came early!
Today Chandy and I finally met with Dr. Nibley in the Utah Cancer Center at the Intermountain Medical Center in Murray.
We've been pretty nervous about this day because this appointment was to let us know the extent of Chandy's treatment going forward. We fully came prepared to make the appointment for her Chemo. Chandy was lobbying for starting it after the Holidays and I've been after her to get going with it on the first possible date (I know, easy for me to say).
You can imagine that she's worried about not feeling or looking good for Christmas and the New Year festivities. I told her that I couldn't care less about this Christmas! I'm more worried about Christmas 10 years from now.
Well the appointment went well and Dr. Nibley seems to be a great guy. We had to wait for awhile sitting in the exam room until he came in. We waited so long that I actually fell asleep and was just getting in my REM sleep mode when he burst through the door. It took me a few ticks just to remember my name and where I was. I may have missed the first part of the conversation just trying to find my bearings but the appointment went real well. He's got a knack for explaining the entire situation in a way that we could easily understand. It was a day of great news!
We find now that there is a chance that Chandy will not need Chemo...a very good chance! Dr. Nibley's estimation is that there is a 90% chance that Chandy is cancer free right now! I about fell off the chair! I felt like an interrogator because I asked him about five different ways what that 90% chance really meant and I kept getting the same answer!
Her tumor is considered "grade 2". Not as aggressive as a grade 3 but also more aggressive than a grade 1...sorry if what I just typed made me look like the master of the obvious. Because the tumors were smaller than 1 centimeter and the lymph nodes were clean there is a 90% chance that it wasn't on the move before they took it out.
Hallelujah!
They are sending a sample of the tumor to some place in California to have a very important sounding test done, the name of which I can't remember or pronounce. This test will more definitively determine how aggressive her particular tumor is and whether or not it merits having the chemotherapy done. Dr. Nibley doesn't expect so but we need to be sure. Knowledge is power.
It isn't quite celebration time, the fight isn't completely over, but what great news. We are fighting the urge to be overly optimistic and get our hopes too high until we find out for sure but what a great place for Chandy to be in now at the beginning of the Holiday Season. I know the relief I'm feeling and I know Chandy feels it times ten. I wish you could've seen her face on our way out after the appointment.
The best part was leaving the Dr.'s office and we were trying not to be too outwardly overjoyed until the elevator doors closed and then you should've seen the hug! I didn't even care if it hurt her "new girls".
We meet with Dr. Nibley again on January 13th to go over the results of this important sounding test and see whether or not further treatment will be necessary.
I told Chandy that we are going to forget about cancer for the next month. We're going to try to block it out completely and enjoy the Holidays and the fun and our family. I can't wait to have a team (family) meeting with the boys tonight and give them the news. They could use a little relief as well.
Does God answer prayer? Has fasting benefited Chandy? Is the Power of the Priesthood real?
I think the answers to those questions are obvious.
Thank you, thank you, thank you.
G
We've been pretty nervous about this day because this appointment was to let us know the extent of Chandy's treatment going forward. We fully came prepared to make the appointment for her Chemo. Chandy was lobbying for starting it after the Holidays and I've been after her to get going with it on the first possible date (I know, easy for me to say).
You can imagine that she's worried about not feeling or looking good for Christmas and the New Year festivities. I told her that I couldn't care less about this Christmas! I'm more worried about Christmas 10 years from now.
Well the appointment went well and Dr. Nibley seems to be a great guy. We had to wait for awhile sitting in the exam room until he came in. We waited so long that I actually fell asleep and was just getting in my REM sleep mode when he burst through the door. It took me a few ticks just to remember my name and where I was. I may have missed the first part of the conversation just trying to find my bearings but the appointment went real well. He's got a knack for explaining the entire situation in a way that we could easily understand. It was a day of great news!
We find now that there is a chance that Chandy will not need Chemo...a very good chance! Dr. Nibley's estimation is that there is a 90% chance that Chandy is cancer free right now! I about fell off the chair! I felt like an interrogator because I asked him about five different ways what that 90% chance really meant and I kept getting the same answer!
Her tumor is considered "grade 2". Not as aggressive as a grade 3 but also more aggressive than a grade 1...sorry if what I just typed made me look like the master of the obvious. Because the tumors were smaller than 1 centimeter and the lymph nodes were clean there is a 90% chance that it wasn't on the move before they took it out.
Hallelujah!
They are sending a sample of the tumor to some place in California to have a very important sounding test done, the name of which I can't remember or pronounce. This test will more definitively determine how aggressive her particular tumor is and whether or not it merits having the chemotherapy done. Dr. Nibley doesn't expect so but we need to be sure. Knowledge is power.
It isn't quite celebration time, the fight isn't completely over, but what great news. We are fighting the urge to be overly optimistic and get our hopes too high until we find out for sure but what a great place for Chandy to be in now at the beginning of the Holiday Season. I know the relief I'm feeling and I know Chandy feels it times ten. I wish you could've seen her face on our way out after the appointment.
The best part was leaving the Dr.'s office and we were trying not to be too outwardly overjoyed until the elevator doors closed and then you should've seen the hug! I didn't even care if it hurt her "new girls".
We meet with Dr. Nibley again on January 13th to go over the results of this important sounding test and see whether or not further treatment will be necessary.
I told Chandy that we are going to forget about cancer for the next month. We're going to try to block it out completely and enjoy the Holidays and the fun and our family. I can't wait to have a team (family) meeting with the boys tonight and give them the news. They could use a little relief as well.
Does God answer prayer? Has fasting benefited Chandy? Is the Power of the Priesthood real?
I think the answers to those questions are obvious.
Thank you, thank you, thank you.
G
Monday, December 8, 2008
Emergency Room
Late yesterday, while I was at a stake meeting, Chandy texted me and told me that I had to come right home because she was experiencing some unbearable pain.
This kind of came out of nowhere. As you can see from her last blog, she has been dealing with an accumulation of fluid in her right armpit. You would think that it would be soft and mushy because it's filled with fluid but it is as hard as a rock. She's been just taking tylenol or ibuprofen over the last number of days and it seemed the pain had been manageable.
The situation had been gradually getting worse until yesterday about 5pm when she realized that she couldn't continue the way it was. She took a few ibuprofens about 6pm and they had no affect.
When I got home from the meeting she was in the fetal position in our bedroom beside herself in pain. It seems the pressure from the "capsule" of fluid was pressing on some main nerve. Thankfully she has been saving her last percocet just in case. I had her take it (after twisting her arm) at about 7pm and I called the after hours number for her reconstructive surgeon.
Don't tell anybody, and Keith if you're reading this please close at least one eye...I had Cody (who still only has his learners driving permit) take the car and drive his brothers to their grandmothers house so they wouldn't see their mother in so much pain or hear the words coming from her mouth (nothing horrible, just the bad words you might find in the Bible).
Thankfully Cody made it there in one piece without jeopardizing his own life, the life of his brothers or anyone else on the road. It's good to have a first born who can look after his brothers in a bind. It's also a huge plus to have Chandy's parents living so close to us.
Dr. Ferguson called me almost immediately after he received the page and asked me to check for the typical signs of infection...redness, fever, heat at the part of her armpit affected. Thankfully she had none of the symptoms. He was hoping to maybe see her this morning to address the problem but I let him know that there was no way she was going to make it through the night in her condition.
He was nice enough to meet us at the IMC emergency room about an hour later where he drained an incredible amount of fluid from her. By the time we got to the emergency room, the percocet had taken affect and at least Chandy got some minor relief from the pain she was experiencing.
After Dr. Ferguson was through removing the majority of the fluid, she was pretty well back to normal. He mentioned that he was going to meet with Dr. Rasmussen (the surgeon who performed the mastectomy) this morning and they would decide the best course of action to take from here to make sure this didn't happen again.
We just found out that they have decided to keep an eye on her and not perform another surgery to remove the "capsule" or install another drain because they believe that the fluid will continue to diminish. We can only hope so.
I can't stand this feeling of being helpless! I can't help but wish that this problem was something that I could just get my hands on so I could cut loose and kick it's a........it would be such a nice stress relief and I'm certain I would feel so much better afterwards! I've always thought that if someone/something ever attacked my wife that I would be able to take care of it the old fashioned way, knuckle and skull...but this attacker is beyond my ability and it drives me mad.
Isn't it too early in the process for me to be tired of it already?
I am just so thankful that I have not only married the prettiest girl I know, but the toughest one as well.
G
This kind of came out of nowhere. As you can see from her last blog, she has been dealing with an accumulation of fluid in her right armpit. You would think that it would be soft and mushy because it's filled with fluid but it is as hard as a rock. She's been just taking tylenol or ibuprofen over the last number of days and it seemed the pain had been manageable.
The situation had been gradually getting worse until yesterday about 5pm when she realized that she couldn't continue the way it was. She took a few ibuprofens about 6pm and they had no affect.
When I got home from the meeting she was in the fetal position in our bedroom beside herself in pain. It seems the pressure from the "capsule" of fluid was pressing on some main nerve. Thankfully she has been saving her last percocet just in case. I had her take it (after twisting her arm) at about 7pm and I called the after hours number for her reconstructive surgeon.
Don't tell anybody, and Keith if you're reading this please close at least one eye...I had Cody (who still only has his learners driving permit) take the car and drive his brothers to their grandmothers house so they wouldn't see their mother in so much pain or hear the words coming from her mouth (nothing horrible, just the bad words you might find in the Bible).
Thankfully Cody made it there in one piece without jeopardizing his own life, the life of his brothers or anyone else on the road. It's good to have a first born who can look after his brothers in a bind. It's also a huge plus to have Chandy's parents living so close to us.
Dr. Ferguson called me almost immediately after he received the page and asked me to check for the typical signs of infection...redness, fever, heat at the part of her armpit affected. Thankfully she had none of the symptoms. He was hoping to maybe see her this morning to address the problem but I let him know that there was no way she was going to make it through the night in her condition.
He was nice enough to meet us at the IMC emergency room about an hour later where he drained an incredible amount of fluid from her. By the time we got to the emergency room, the percocet had taken affect and at least Chandy got some minor relief from the pain she was experiencing.
After Dr. Ferguson was through removing the majority of the fluid, she was pretty well back to normal. He mentioned that he was going to meet with Dr. Rasmussen (the surgeon who performed the mastectomy) this morning and they would decide the best course of action to take from here to make sure this didn't happen again.
We just found out that they have decided to keep an eye on her and not perform another surgery to remove the "capsule" or install another drain because they believe that the fluid will continue to diminish. We can only hope so.
I can't stand this feeling of being helpless! I can't help but wish that this problem was something that I could just get my hands on so I could cut loose and kick it's a........it would be such a nice stress relief and I'm certain I would feel so much better afterwards! I've always thought that if someone/something ever attacked my wife that I would be able to take care of it the old fashioned way, knuckle and skull...but this attacker is beyond my ability and it drives me mad.
Isn't it too early in the process for me to be tired of it already?
I am just so thankful that I have not only married the prettiest girl I know, but the toughest one as well.
G
Wednesday, December 3, 2008
Fluid of the PIT!
Yes I have had some nasty side effects since my drains have come out. On Friday I noticed a lump in my right arm pit, where the lymph nodes were removed. I am just starting to get feeling back so I didn't know if it was a new lump or if it has been there since surgery. By Sunday it was really starting to hurt and I could hardly move my arm. G called Dr. Rasmussen's office Monday and we saw him yesterday at 11:00.
After he checked it, he asked if it hurt bad enough to stick a needle in there to see what it was. I am definitely no fan of needles, but I needed the pain to be gone so I told him to go ahead and stick me! Out came a full syringe of fluid! Yuck! After he pulled the needle out there was still some fluid leaking from my arm pit and it was dripping down my side. I was freaking out saying that this is such a pain in my butt to deal with this. Dr. R said "Um, no this would be a pain in the pit, Chandy!" Ok I had to laugh he was trying to lighten the moment and I was glad to see that doctor's can be funny too! He told me to watch it and make sure it didn't get any worse and if there was any swelling by the alloderm to call Dr. Ferguson. Dr. R didn't want to stick any needles close to where the tissue expander is.
I came home and took a nap and by 4:00 it felt much worse and the swelling was all back and even a little more. So I started getting worried so we called the Dr.'s office and they told G the doctor could see me on Friday. Friday! No not quick enough, so G talked to the nurse and explained to her what was going on and she told us to come in today at 8:30 when their offices open.
Dr. Ferguson saw me this morning and he was relieved to see that it wasn't too bad. After he talked to his nurse last night he thought it was going to be much worse than what it was. He said that we could try to get more fluid out but the swelling wasn't close to the alloderm and my body should be able to absorb it. So he stuck me as well. Like 6 or 7 times! He couldn't get much fluid out and he was digging deep. The lump in my armpit he called a capsule of fluid and that is why it won't go away after they drain the fluid out. Over time my body should absorb it and if not they will operate to remove it. He told me to watch for the signs of infection by the alloderm, red or hot skin, fever and swelling. He packed my bra full of gauze pads to keep compression on the area and I teased him saying, "Well I came in here with 2 and now I am leaving with 3!" I felt like I had 3 breasts because my bra was totally stuffed. I remember stuffing my bra when I was younger and now I have a doctor doing it for me. A little strange but we all had a good laugh. Thankfully it turned out to be no big deal.
I have been pretty sore throughout the afternoon, but my spirits are in a much happier place today. Last night was rough, my mind of course would go to the worst place possible thinking I had an infection and they were going to have to start the reconstruction process all over. So the day has ended on a good note.
Countless thanks to each of you who have continued to help my family during this. Especially my sweet husband. He has been doing the job of 2 the past couple of weeks and I know that it has been physically draining on him. Yet he still manages to attend every single doctor's appointment with me and holds my hand when I am scared. Thank you from the bottom of my heart babe!
My boys have also been troopers through this ordeal. They have all taken turns with the daily chores and I don't even hear complaints about it. Even Matt asks what he needs to do for me. When he wants a hug he will give me my bunny stuffed animal so I can hold it. He says that way he can hug me and it won't hurt my cancer! He also asks everyday who he is going to play with. He calls his grandma Jackie and asks. "Grandma, what are we going to do today?"
Next Wednesday I meet with Dr. Nibley the oncologist and we will make plans for the chemo therapy.
Hugs and kisses all around!
Chandy
After he checked it, he asked if it hurt bad enough to stick a needle in there to see what it was. I am definitely no fan of needles, but I needed the pain to be gone so I told him to go ahead and stick me! Out came a full syringe of fluid! Yuck! After he pulled the needle out there was still some fluid leaking from my arm pit and it was dripping down my side. I was freaking out saying that this is such a pain in my butt to deal with this. Dr. R said "Um, no this would be a pain in the pit, Chandy!" Ok I had to laugh he was trying to lighten the moment and I was glad to see that doctor's can be funny too! He told me to watch it and make sure it didn't get any worse and if there was any swelling by the alloderm to call Dr. Ferguson. Dr. R didn't want to stick any needles close to where the tissue expander is.
I came home and took a nap and by 4:00 it felt much worse and the swelling was all back and even a little more. So I started getting worried so we called the Dr.'s office and they told G the doctor could see me on Friday. Friday! No not quick enough, so G talked to the nurse and explained to her what was going on and she told us to come in today at 8:30 when their offices open.
Dr. Ferguson saw me this morning and he was relieved to see that it wasn't too bad. After he talked to his nurse last night he thought it was going to be much worse than what it was. He said that we could try to get more fluid out but the swelling wasn't close to the alloderm and my body should be able to absorb it. So he stuck me as well. Like 6 or 7 times! He couldn't get much fluid out and he was digging deep. The lump in my armpit he called a capsule of fluid and that is why it won't go away after they drain the fluid out. Over time my body should absorb it and if not they will operate to remove it. He told me to watch for the signs of infection by the alloderm, red or hot skin, fever and swelling. He packed my bra full of gauze pads to keep compression on the area and I teased him saying, "Well I came in here with 2 and now I am leaving with 3!" I felt like I had 3 breasts because my bra was totally stuffed. I remember stuffing my bra when I was younger and now I have a doctor doing it for me. A little strange but we all had a good laugh. Thankfully it turned out to be no big deal.
I have been pretty sore throughout the afternoon, but my spirits are in a much happier place today. Last night was rough, my mind of course would go to the worst place possible thinking I had an infection and they were going to have to start the reconstruction process all over. So the day has ended on a good note.
Countless thanks to each of you who have continued to help my family during this. Especially my sweet husband. He has been doing the job of 2 the past couple of weeks and I know that it has been physically draining on him. Yet he still manages to attend every single doctor's appointment with me and holds my hand when I am scared. Thank you from the bottom of my heart babe!
My boys have also been troopers through this ordeal. They have all taken turns with the daily chores and I don't even hear complaints about it. Even Matt asks what he needs to do for me. When he wants a hug he will give me my bunny stuffed animal so I can hold it. He says that way he can hug me and it won't hurt my cancer! He also asks everyday who he is going to play with. He calls his grandma Jackie and asks. "Grandma, what are we going to do today?"
Next Wednesday I meet with Dr. Nibley the oncologist and we will make plans for the chemo therapy.
Hugs and kisses all around!
Chandy
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