From the monthly archives: December 2013

Today will be the close of this year. This year brought a lot things I was not expecting. I have been prepared to face this because of trials in my life as I grew up.  Well,  people don’t usually think I am going to have cancer or a tumor etc. Of course that is on my mind, it has been for years. It is something I shouldn’t have to think about being  a possibility. It is usually at the back of my mind.

Starting in 2008 it has made me think about it more.  The removal of the pheochromocytoma in 2008, has made me think more about my health, and how we take life for granted. I’ve felt better every year after the removal, and with the constant reminder that it could come back. In October I made it to the five year mark of being pheochromocytoma free. Which I am thankful for every new year. You begin to realize after the tumor is removed, and wonder how you even managed life with it. It does wreck havoc. The high blood pressure is one aspect of it. e.g. my blood pressure of 220/135 with pulse of 110.  After the removal with blood pressure dropping down and remaining at normal levels. You feel a world of difference. You begin to wonder and wish you had this normal feeling for all these  previous years.  I’m sure it would have helped with a lot of different situations. But the thing is, I would not be the person who I am today without it. I do spread awareness to others, and wish I could do even more. No one should go through this alone.

Back in January, I had more scans(FDG PET and MRI of BODY) at the NIH in Bethesda, MD. That’s is why I flew to DC. Most likely own unbeknownst to people on facebook. A fun trip to see other pheo/para patients then the not so fun part(scans).  NIH is a few hops away to DC on the Metro via the Red Line.  I do expect to go back for more scans in two to three months. Then in May at UMC, I will have two more follow-up scans(MRI/CT) . Then more six months after that. So, with the scans for the pheochomocytoma and now the sarcoma. Basically a lifetime followup of scans.

This year has been long. Recovery was an arduous process in of itself. Going from feeling better at the peak of being recovered to going back under the knife and starting the whole process over again. The second time, was more difficult. Especially, having stairs as the new challenge in this endeavor.  Moving to a new place after the first surgery, and living upstairs it brought some difficulty traversing up and down the stairs.  Thinking back about to the ultrasound in April, and I was given a differential diagnosis of sarcoma. I researched on topics covering everything about sarcomas.  I prepared myself mentally about the possibility of that diagnosis. The MRI in May, didn’t confirm it but still left it as a distant possibility. Even the doctors didn’t think it was one. I guess with my medical history they considered to be a neurofibroma. Even though I heard the words from their mouths that it was not connected to a nerve (neurofibromas are connected to nerves, usually wrapped around them. Also not usually deep in the muscle). Then the biopsy in June gave me hope, with the results saying a neurofibroma. I still wondered, because of the statement that was said at  a previous appointment.  I then flew to DC  a day later for a conference on pheochromocytomas and paragangliomas. Which helped me enjoy the trip, but could have helped knowing the real diagnosis since I was at the NIH for the conference. I could have conferred with them personally.

 

Enough of that.  There are different types of cancer. Some people do go through chemo and/or radiation.  Radiation would have replaced the second surgery to clean up margins;  if I had not opted for additional surgery.  Even with the second surgery done, radiation is still a possibility. Just not for now, I am on a watch-and-wait approach currently to see how things progress (if they do).  Which is great news, that I was able to hear before Christmas.  I know a lot from researching about radiation that it would not be needed right now but it was reassuring hearing it from the radiation oncologist himself.. I’m not ready for radiation and do want to go through it because of damage to normal cells. And definitely do want to do it for good measure if it is not necessary.  I go back again in four months to see the radiation oncologist again, and hopefully it will be the same good news then. To wrap up this paragraph, I know people who have gone through so much more. I in no way I am putting what I’ve been through above their own trials.  We all go through different trials in life whether cancer or other hardships.  As each year goes on finding out someone you know dieing from cancer, is a common occurrence when you are connected via support groups. So,  I know they faced such rougher trials and are troopers.

One more thing, I need to say. A cancer diagnosis does change you. All of life around you changes. You realize who are your real friends; who care. It does make it harder for people to talk to you. I am sure because of that barrier between you two. But looking again, and from what I learned this year. There are ways to overcome the diagnosis and not let it slow you down. It will definitely bring a lot of stress on a person, even if they don’t say a word about it. Trust me, it is there. And  returning to work, it all becomes different as well.  Even, with people you interact with on a weekly basis. You learn to do things for yourself. If something makes you happy do it.  Relieving stress is the biggest part of it all.  There are various methods but remember that small thing you do for yourself, is better for your well being in the long run. I know it helps, it doesn’t change the diagnosis. e.g. I did watch a movie with a friend and missed another event  this year, that I felt I should have attended. So, basically I am glad I made that choice.  It was a form of therapy, which helped me just get away from things for two hours.

Now, I do feel a lot better. I am walking normal now. It has taken two months, since the surgery in October to feel the way I do today.  I have goals that I need to make now. I do plan to at least run a 5k this year. I haven’t even attempted to run even a short period. I know I can walk just fine. So, a goal for 2014 is to complete at least one 5k. There is a 5k in March, called Color Me Rad, that I might just prepare and enter.  I won’t let the sarcoma diagnosis slow me down. And with a little less muscle mass in the right leg from the surgery, I won’t let that be an excuse to not participate.  I fully plan to follow this through. I don’t know where 2014 will bring me but 2013 has definitely prepared me more for this year to come. I have some stresses into the beginning of the new year, but hopefully those will work themselves out. I am thankful to God for bringing me through all these years, without his help and guidance I don’t know where I would be today. He is my rock and shield. He will continue to safely bring me through into this new year. And I am thankful for His love.

 

 

Ok, today is the first post that will help move this blog forward. I plan to update this with various things going in daily life.

Well, yesterday I went to the Snow Queen. A ballet put on by Ballet Magnificat!. I went to this two years ago in December of 2011. I enjoyed it. I went this year with a group of friends after church to see it.  I had a different perspective on the ballet this year. I sat up in the lower loge section of Thalia Mara Hall instead of sitting down front.  When you sit up higher, you can get the whole perspective of the ballet. Otherwise you are seeing a small section, mainly the dancers feet if you sit too close.  You can see the whole direction of the ballet, and all the movements when you are up in this section.  I would recommend sitting up higher when it comes to viewing a ballet.

In Thalia Mara there are some disadvantages, it seems when you are in the loge section. There will be partial views blocking, either from sitting too close to the side wall or people’s heads in front of you. If you can secure section A, it would definitely be your best bet. I sat in section B, and it was still wonderful to view it from this perspective.

Ballet Magnificat! always put on a good production, and this is one of their best performances for the end of the year. I must say I did enjoy this production of the Snow Queen, it was definitely different from two years ago. If you have a chance to catch a ballet from Ballet Magnificat! it will be well worth it. (my perspective below)

ballet.snow.queen.sm

On a side note, Thalia Mara will be undergoing multi-million dollar renovations starting in January. This was one of the last performances this year before they begin.  I realized my Bravo! series tickets to the symphony will change venues due to the renovation and be held at Christ United (for Bravo III and IV) and then Jackson Prep (for Bravo V) in April. Tickets will be by general admission by sections according to tickets, and they will be sending them out soon. Then Bravo V will be split into two nights, Friday and Saturday. I am looking forward to hearing all three, and hopefully the venue changes will be a nice change of pace.

 

I have an appointment as of last week to see a radiation oncologist. It will be on December 23 or as I like to call it Christmas Eve, Eve. I called back and talked to the office. I was processing thoughts of the consult I will be having with the doctor.  I am thinking do I really need to see a radiation oncologist. The margins were clear as of the last surgery. Would I want to radiate normal cells, since the amount they took out; nothing was found. Also, since the doctor doesn’t treat sarcoma patients on a normal basis. That is an assumption I have because sarcomas are rare, and this is not a sarcoma specialist. Also, to be considered to be a hospital that is a sarcoma center, it must meet certain criteria.  Unfortunately UMC is not one. But that doesn’t mean the doctors are not qualified to treat a patient with one.

I have to weigh my options. This goes back to having a pheochromocytoma, and applies to this as well. I know of too many stories of patients dealing with inadequate treatment options with pheochromocytoma. So, I have to be careful. I know of patients with sarcomas, that are in a similar boat. Since, I am not a sarcoma center with a team of specialists. I have to be my own advocate. No offense to any doctors. They would do the same thing.

I don’t want any unnecessary radiation. I rather save that in case there is a recurrence and it is better to do that then.  I think there is a certain point where you cannot radiate that portion again. I would hate to have to go through a few weeks of daily treatment that was not necessary. Once again this is where second opinions, do wonders. I ignored getting a second opinion about having the next surgery. I just went with it, and decided it was the best option. Otherwise take time off from work. Then I might have to wait two to three weeks to get into another appointment at a distant hospital.  Spend money on flight and hotel plus additional doctors bills. Then with all the time I spent going through the time consuming process(The tumor was removed, so since it is not there. My options are different than if I presently had it). So, if it was diagnosed at the original biopsy correctly, I would have considered a better location. But I digress I wanted to stay local. Traveling takes it toll, and the continued process for additional appointments. After all that, if additional surgery was the best option. I just wasted the time for a date to be scheduled. Thus I have to wait longer.

So, to radiate or not radiate. I choose not radiate. My opinion might change once the doctor tells me otherwise. The risks, side effects, and the task of going through treatment, can take a toll on a person. That is one reason. The other reason if it is even necessary with the particular sarcoma that I had removed.

Another thing, I do need to adequately prepare for this consult. This is where I need to have all the questions prepared beforehand for the visit. If treatment is necessary, the next appointment is to setup all of this up. All this right before Christmas. I could wait. But I rather get this all out of the way now. Because once the burden is lifted about the appointment. I know I will feel much better.

In conclusion, It will affect at what time I leave for Christmas break. I just rather know and be able to enjoy the time off. This was quite a long post to wade through, if you read this far. But you have to consider your own health. Be your own advocate  when you are given options. There are others out there. So, choose wisely. You will be glad you did. For now I will roll with the ones I have now.