Well, I have a flight booked to DC and hotel room reserved (June 25-28) now in June for the 3rd Annual Patient Symposium on Pheochromocytoma and Paraganglioma @ NIH. I will possibly be going in May for some routine scans as well. I don’t have any details as of yet. I will post more details when I find out.
I’m looking forward to seeing old pheo/para friends and meeting new ones. It will be a long day but it will beneficial to all who attend. The next day should have a lot of information as well but will probably not be as long. I will post details about what’s on the schedule for that as well.
Otherwise, I realized I have been neglecting to post here. I will try to update about a play I saw last weekend at New Stage theatre, called the Whipping Man. Otherwise today has been a long day. I am glad it is over with now.
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.
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.
I had my follow up appointment with my orthopedic oncologist today. So far, everything is looking good with the healing with the scar. I had questions answered that I needed to hear. I found out how much tissue was removed from the surgery. The report says “white-tan skin ellipse (11.0 x 2.5 cm) with underlying subcutaneous tissue, fat, and muscle (11.0 x 6.0 x 5.5 cm.” To clarify the meaning of skin-ellipse is the portion of skin that was removed and of course the next statement was everything else. Which happens to be a good portion that was removed during the surgery.
Side Note: Also, a sigh of relief was what was thought to be a possible neurofibroma on the spine from an MRI earlier this year, is nothing at all. That was at the back of my mind, that I didn’t think about too much. I am glad that is resolved.
Also, radiation was discussed. Radiation is not out of the picture yet. She will discuss with the radiation oncologist and find out if it needs to be done. I rather not have radiation but if it is required, I will go that route. I will find sometime soon if radiation is needed and give the details here.
The next step is an MRI and CT scheduled for May to continue the followup. Other than that I need to continue the healing process. And get out and walk more and exercise so, I can mostly get back to normal.
I know that God is in control of all things. I realize I have been throughout a lot growing up with surgeries, and even this is another trial that I’ve been through. I know I will continue to get stronger and these have only helped me along the way to shape who I am now. I am thankful for everything I’ve been through, because I do not know the person who I would be today, without all these events happening in my life. It is time to move forward.
I thought I was making progress recovering. I feel like I’ve regressed back a couple weeks in terms of how the leg feels. It may be the cold weather. But probably more likely I either picked up something I shouldn’t have or stepped wrong.
I decided to go back to using a crutch. I’m not even sure that is the best method. I’ve not even talked to a physical therapist, so when I transitioned from two crutches to one crutch. I did that on my own accord. So, hopefully now using one crutch will lessen the pain and put less stress on this leg.
I feel enough pain to take medicine to relieve the pain. I rather feel it then have it cover up. The multiple surgeries that I’ve had, when I compare it to those pains overall, it is minor in comparison.
At this rate in my recovery process, seems it will take longer than expected.
I have to look past all the pain, and looks towards the future. I know I will be better. I will walk and move faster. Small hurdles I have to go through now to get to the final outcome. I am thankful for everything I’ve been through. It only makes me stronger to face the road ahead.
Scar is healing up nicely. I am off crutches as of a few days ago. I still have a slight limp, when I am walking. I am sure it will get better as the days pass.
Still have limitations on what I can do. I still try to avoid heavy lifting or any thing significant enough at work or around town, to allow healing to continue.
I need to look on positive side and not of any negative statistics on what could happen if this recurs. But it is hard not to since, I am just three months away from first surgery, and one month from the last one. Then playing the waiting game. Hard to return back to life and think everything is normal. In actuality in bleeds into everyday life, more so than I realized.
Going from being five years free of a pheochromocytoma, and with the sarcoma being diagnosed. Life doesn’t return to normal after surgery. But a new one is actually started. Life is looked at differently, and appreciated more. There are more risks you are willing to take. A chance to step out of your comfort zone and go into boundaries you never thought possible.
As life goes on around you, people continue in their same pattern. As you flow into a different one, but unaware to those around you.
A chance to experience things that can bring you joy. There are places to be, things to do. The concept of time is what we take for granted. We can fill our time with useless things, and not realize the pattern we are in day to day.
There is a lot of free time. We have to learn to put it to good use. Charting out, what you do in a day is a good tool to use. When you look back on the week, it can be surprising. Do we let things bother us that can creep into other parts of our day. Those aspects need to be marked and eliminated if possible. We need to deal with those and not ignore the underlining issue.
Once you get a better grip of time spent, you can value it a lot more. Get out and experience life. We came from dust and til dust we shall return.
I for one am appreciative of all that I’ve been through and won’t let any tumor keep me from feeling a since of normal. I will continue on.
Clean margins is what I was told. The previous surgery had a micropositive margin, so I knew this surgery would clear it up. So, pathology was good.
Couldn’t really ask that many questions since this was more of a wound check type appointment. But I was able to get the basic information I needed.
God is good.
I’m sure the post-op appointment will be fine. I’ve haven’t been notified otherwise. I will find out the pathology results from the surgery though, and that is a good thing. I am not too worried about it, since it normal tissue that was surrounding where the tumor was originally located.
I will get to find out exactly how much she took out. The scar did increase it was around 5 inches, and it is currently 7.5 inches. The tumor was about 4.5 cm at the biggest point. So 4.5 cm to inches is 1.7 in. And 7.5 inches to centimeters is 19.05 cm (from 12.7 cm, previous surgery). The scar is thus longer than the tumor itself. But the scar is the smallest of the scars, from my other surgeries.
Again this is just a standard post-op appointment with the nurse practitioner of the surgeon. He will check up on the scar, and find out how I am healing. I’ll need to get all my questions answered though, because if I don’t I’ll have to wait to see the doctor on the Tuesday before Thanksgiving.
Also, healing is coming along nicely though. Some soreness still. I’m not walking perfectly yet. I’ll give it two to three weeks. But otherwise doing well. 🙂
On Thursday around noon, I went to the ER because of a suspected blood clot. I had some swelling, definite warmth and a red hue around part of the incision. I also was experiencing pain and soreness that didn’t seem normal.
I didn’t have to wait long to be seen. It was around five minutes. I get into the treatment room and sit on the bed. I explain everything to them. After they looked at it, they are telling me it is normal. I noticed the warmth wasn’t there, and red hue had gone away. I also noticed I wasn’t experiencing any more pain. I contemplated as I waited alone in the room for about two hours. I’m not sure how I was feeling better all of a sudden. I thought of different reasons. There was no other scenario that could make me do a total 180. From feeling the way I did for the two previous days. The only explanation I can think of is prayer and that God is continually working in my life.
Today, I am starting to feel a lot better. Soreness still abounds, but not that bad. I’ve not had any pain medicine since that Thursday morning.
I will be glad when I am back to walking normal once again. It is easy to take things for granted. I am doing what I can. One day at a time.
Still some major swelling and bruising. Which is most likely normal after the surgery and trauma to the surrounding area of my leg. The scar is much longer than last time. There was more work involved with removing different layers of tissue (skin down to muscle).
Also, I may have done too much on Saturday moving around. Mainly going up and down the stairs on two different occasions. Which I need to avoid and keep to a minimum. Note the earlier post about excessive stair climbing. I failed to consider this part of that example, but I believe it fits in perfectly. I dd enjoy getting out of the apartment though.
I am moving around but it does hurt with each step I do take. Which I consider the normal part of the healing process after surgery. Like my previous surgeries, I do have to keep moving around despite pain and discomfort. It really is not that bad just don’t like feeling this way. I’ll have to continue to rest and realize that I can’t get up and move around in this state.
I know recovery will take time. I will take each day as it comes. I know God has a plan, and even this is part of it all.
Proverbs 16:9 The heart of man plans his way but the Lord establishes his steps.
1 Chronicles 16:34 Oh give thanks to the Lord, for he is good; for his steadfast love endures forever!
God has been working in my life always, and I will continue to trust Him.
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