Sloan-Kettering opinion

Overwhelming is a good word to describe today's visit. For one, my apt was at 2:30 an we didn't get seen until after 5:30 and were in there with the Dr for about an hour.  And this is all without a nap for me! 
  Dr. Saltz is very concerned about the mass on my ovary and we spent most of the time addressing that.  He actually said that he thinks its cancer and there is a 10% chance that it isn't.  He said he has seen cases of patients with colon cancer in the ovary and that the cancer there is less responsive to the chemo.  He was less concerned about the lung and said that he would wait another 3 months and do another scan to see if it has changed at all.  He also was against radiation but also said that if he were even to consider it, it would have to be after the mass was taken off the ovary.  If the mass is cancer then there is no reason to do radiation. 
  Obviously this contradicts a lot of what my oncologist has in his plans for me so it is overwhelming and will take a while to digest.  I have to say I agree on the lung surgery plan though, all along I have said we should just wait longer to see if it changes.  He was more forward than the radiation oncologist I saw in Providence about the negative consequences of the radiation and didn't really see the point of doing it.  

More appointments

I have my gynecological oncologist appointment next week on Thursday.  I have learned that I will most likely have the two surgeries before radiation.  The nurse told me they would probably be 4 to 6 weeks apart.  This is quite the set back for when I will be done with all of this unfortunately.  I have kind of mentally prepared for going through with radiation although I am very curious to hear what they have to say at Sloan.
  Another interesting twist is that I found a study researching chemo causing cystadenofibroma.  Just too coincidental that none of my scans showed the cyst until after chemo.  I also learned one of the reasons they would want to do the ovary surgery before radiation is the potential for malignancy in the cystadenofibroma from radiation.  So far I am guessing that they will take the whole ovary but curious if a hysterectomy will be suggested because of ovarian cancer in my family.  Not sure that I really care since radiation will make all those parts useless anyway.
   Despite this new set back in my recovery I am feeling really good and strong.  The neuropathy continues to get worse but I'm getting used to it.  Looking forward to the trip to NYC!

MRI results

So there is good news and bad news the way I see it.  The very good news is they don't think the mass is cancerous.  My oncologist said that it is not a metastasis from the colon cancer and it is not ovarian cancer.  BIG YAY!  The bad news is he thinks it will need to be removed because of malignant potential.  He called it a cystadenofibroma which from what I can gather is a benign tumor on the ovary.  The radiologist noted it as highly suspicious.  They referred me to a gynecological oncologist and I'm waiting for them to call me.  Unfortunatley it sounded like this being removed and the lung surgery could not be done at the same time, so I am not looking forward to two surgeries in the future.  I am not sure how this will play out in the line up of the lung surgery and the radiation.  I am awaiting a call from the lung surgeon to get a date for that surgery. 

persistence!

I have been calling the MRI department to see if they by chance had any cancellations in the next few days and they finally did.  I have the scan with the contrast tomorrow at 8am!  This is extra important because I have my second opinion in NYC on Tuesday and want to make sure i get all my records to them and I wasn't sure i could get the scan saturday and get copies of it by Monday when we leave.  I am hoping since the scan is so early i can hear some results tomorrow afternoon!!

MRI yey yey

Well, last night wasn't exactly fun.  They were a half hour behind with the scans and then they couldn't get my veins to cooperate to do the contrast.  I have never had problems with my veins before.  I was told this is common after chemo, hence the port.  well I wanted them to access my port to do the test but they didn't have anyone around that was trained to do so.  So we did the scan (45 mins worth) and then the last part, (2 mins worth) is with contrast which we did not do.  Come to find out the MRI people call me today to tell me that the radiologist will not read the scan without the contrast.  So I had to make a ton of phone calls to coordinate getting someone to help access my port so that i can go back and get the scan done with contrast.  You would think the hospital could figure this out on their own but apparently not.  Now I am going saturday to get that done, that is the earliest they could get me in.  Boy am I learning a lesson on patience!

the waiting game

I just keep telling myself that the Drs are being overly cautious and there is no way I could have ovarian cancer as well, right?  I am hoping we can find out the results of the MRI Tuesday, but we will see.

I have been running the past few weeks and it feels great.  The Drs and research has said that exercise helps move the chemo through your body faster.  As much as I love my naps, trying to plan them with 2 kids is a little hard so I will be glad when I don't have to take them anymore.  Just hoping the chemo is through my system in the next month or so and I can have more energy...just in time for surgery right?

Well maybe I shouldn't have posted about the MRI to worry everyone but it gets me more prayers right!?  Thanks everyone!

MRI apt

Apparently no one cares that I crash at like 8 pm and am in bed by 9 because they scheduled my MRI for Monday night at 9:15pm!  But the sooner the better I guess.

Drs apt

The oncologist still wants me to have surgery, he wants me to be cancer free so he wants the nodules out of the lung.  He is meeting with the pulmonolgist and surgeon next week to discuss my scans.  I was able to get a general idea of when the surgery would be followed by when radiation would start.

  The twist in all of this is that he was concerned about the cyst they saw on my ovary so he sent me over to get an ultra sound.  At the end of the ultra sound the radiologist came in and wanted to look at some more angles.  I started to get nervous at this point and it turned out to be for good reason.  After they were done the radiologist said that she was going to recommend to my oncologist that I get an MRI.  They found a mass on my left ovary that is not a cyst and she thinks they can tell what exactly it is by an MRI.  She said she was concerned because of already having cancer and wants me to get it checked out.  I am now awaiting a call from my Dr. to schedule the MRI.

preliminary scan results

I called the Drs office and got preliminary scan results. The spots they are checking on in the lungs have not changed in size at all. I am glad about this, I find it hard to believe that if they were cancer that the chemo would keep them the exact same size throughout all the treatments, but what do I know. The other awesome news is that there is no new growth anywhere so that is great! There apparently is a small cyst on my ovary but I was told it is not considered suspicious to be cancerous and it is normal. We will be meeting with the Dr Friday to discuss the scan and discuss the surgery

Only way out is through

One of my aunts has started compiling little daily readings for a book she is writing.  She sent me a few of them the other day and one of them I found so fitting to my situation, I asked her if I could post it on here.  The below is something I go through every day, asking myself how I got here and accepting where I am.  I wanted to share it with all of you in hopes I can be better about following the idea of acceptance and surrender, open awareness and compassion.  I loved the title of her reading that states "The only way out is through".

“Why me?” “Why this?” “What did I do to deserve this?” These pleadings are to no avail as all are unworkable. Yet, even here, we can practice open awareness and self compassion. Even here, if we are enduring, attentive and endeavor to recognize our pain and fear, the light will come. In the dark we cannot see and cannot know what is out there in the great expanse of timelessness and uncertainty. By being still, fully encountering and opening our fearful hearts as we contemplate the abyss we can discover a small beacon to light the way. The only path out is to travel through. To surrender to what is, to say, “Even this, I can accept and allow.” -Carolee Lindsey
 

1st radiation oncologist recommendation

I had an apt today with the radiation oncologist that I have seen before at RI hospital.  He had met with my surgeon and was able to discuss with him the exact location of my tumor and whether or not it was up high enough away from the pelvic area to avoid needing radiation.  Unfortunately it sounds like the 7 lymph nodes that had the cancer in them were in my pelvic area enough where the Dr feels it is necessary to do radiation to prevent recurrence. 

We will get a 2nd opinion on this when we go to Sloan at the end of the month.  This still obviously isn't what I wanted to hear.  And it will be really hard to decide what to do if the Dr. at Sloan recommends that I don't get it.  Either way this is not what I wanted to hear.

The radiation is 5.5 weeks long M-F, so 28 days long, not how I want to spend my summer!  It would start 2-3 weeks after surgery.  I am hoping to find out a better idea of when the surgery is when I go to discuss my scan results next Friday the 19th, and my scan is Tuesday the 16th. 

Veda made me do it!!

A stop & shop cake = $11.99
Tickets a friend paid for to fly out from AZ for the week = $$$
Your friend insisting you smash your face into a cake to celebrate your end of chemo = priceless

 

 

celebrating end of chemo

This is what I think is in order to celebrate the end of chemo!

Veda

My friend Veda has been such a great help this past week, I am so sad to see her go tomorrow.  She is so great with the kids!  We have gone on wonderful walks together and I am so glad I was able to spend good time with her while she was here. 

 

 

Loving half of chemo

I can tell such a difference between getting the chemo they left out and not getting it.  I am tired but not sick like I usually am and it is so nice!  My best friend from home came for the week to help me with the kids and its so nice to be able to hang out with her and not be in bed!  My mom went home last week and after taking care of the kids alone for a week i appreciate the help even more!

Compromise

I am getting the pump part of the chemo and another part but  not the rest of it that in theory makes me really sick so I am happy!  It will be interesting to see what just getting the 5FU that is in the pump will do.  But I imagine it is way better than getting it all. They said a lot of people only make it to 9 treatments so I did pretty well!