MRI Results and Surgery Scheduled

First of all, I should say that I had an amazing Thanksgiving yesterday, with our family.  It was the first Thanksgiving in the new house, and it was wonderful to share that with everyone.  Even in the midst of so many challenges, it was great to be able to pause and be thankful for the wonderful people and things in our lives.  With more food than we knew what to do with, and a fantastic Redskins win, the day was nearly perfect!  However, running through the back of my mind, was the news we got from the oncologist on Wednesday morning.

 On Wednesday, David and I met with the oncologist and his team to receive the MRI results and determine a treatment plan for the cancer.  The doctor confirmed that the cancer has spread some, and has invaded my uterine wall.  It is still unclear whether it has spread into the surrounding organs.  This means that the treatment options are fairly straightforward and a hysterectomy is necessary.  The doctors won’t know until the day of the surgery whether it will be a partial or a complete hysterectomy. At a minimum, they will definitely need to remove the uterus and cervix. During the surgery, they will do some biopsies and checking of other organs to determine the spread of the cancer.  If there is any cancer in other areas, there remains the possibility that the doctors will also remove the ovaries, fallopian tubes and lymph nodes. 

 Given that the cancer has spread, the recommendation is to move rather quickly with the surgery, in order to ensure it does not continue to spread.  The surgery date will be a week from now, Friday, November 30.  They said I can expect to remain in the hospital 3-4 nights, and the recovery may be slow afterwards.  There are so many details to get in order, both personally and professionally before the surgery.  However, I want to move as quickly as possible to have the best chance at curing the cancer.

Once the surgery is complete, the doctor will be able to give us a preliminary report on the staging, spread and treatment of the cancer. However, all organs and samples will be sent to the lab.  The complete pathology report will take 10-12 days to be finalized.  Once the final pathology report comes back, we will know whether or not additional medication or treatments, such as radiation, are necessary.  Those recommendations depend upon the spread and aggressiveness of the cancer.

For 6 weeks after the surgery, I will be unable to lift anything larger than about 5 lbs.  I suspect this will be harder than I imagine, but David has been a saint so far, and will definitely continue to be an amazing support.  I’m sure he will take care of everything that I need! I am also very blessed and have had several friends offer to provide assistance in any way possible.

For now, this is what I know:

November 30: Surgery date: 9am at VCU. Surgery will take between 1.5-4.5 hours, depending on what they determine during surgery, and how many organs need to be removed

October 3 or 4: Hope to be released from the hospital

The recovery time is very uncertain.  The doctor said that it will take about 6 weeks to fully recover. I will be very limited in the physical activities that I can do during this time.  The physical recovery will be fairly significant, as the doctor will have to do the surgery through an open vertical incision in my abdomen, which will need time to heal.

It is unclear how long I will need to be out of work.  I am EXTREMELY fortunate to work in an environment where my supervisors and co-workers are so incredible. To say they are supportive is an understatement.  They have offered to step in and assist with my responsibilities, offered to share sick leave with me, and generally been amazing.  I feel very lucky in this sense.

The emotional side of this diagnosis has been the most difficult, and the reason it has taken me a few days to write the update.  I was devastated at the confirmation that I will never be able to carry a child of my own. I always felt that I was meant to have children. When I pictured my future, it always included a child of my own. While I know that God has a plan, and there are more ways to be a parent than biologically giving birth, it is still so painful.  I feel sad, angry, depressed and frustrated at the diagnosis.  I feel like something was taken away from me when I got the news in the doctor’s office. There is no question, we have to treat the cancer first, and worry about the rest later. Even with this diagnosis, I am still lucky that I have a treatable form of cancer.

Over time, as I physically and emotionally heal, I’m sure David and I can explore adoption and other avenues for becoming parents.  The financial costs for those processes are astronomical, and may make them a stretch for us.  Only time will tell.  I keep reminding myself to try and focus on one thing at a time.  Let’s get healthy, that is step 1, and right now, is the only part of this that we can worry about.

Thank you so much for all of your support.  Even with this disappointing news, I still have so much to be thankful for, and today I am going to choose to focus on those.  I have wonderful friends, family, co-workers, and a team of doctors in which I have complete confidence.

Thank you again and I wish you all a wonderful holiday!

 

Erika

Nerves and Waiting...

They say that patience is a virtue.  It is clearly a virtue that I am still working to master. Tomorrow is my doctor's appointment to get the MRI results and determine a treatment plan with the oncologist. I am very excited to finally know the MRI results and know what I am up against. However, I would be lying if I said I wasn't terrified of what those results might show. I am hoping and praying for the best news, but every now and then the "what-if" sneaks in and I wonder what will happen if the cancer has spread or is more problematic than we are hoping.  In my head, I know that there is no benefit to worrying about something that I have no control over at this point, but I can't seem to help it.

I find that my mind is consumed with the diagnosis and what the prognosis will show tomorrow.  Even in a crowded room of friends, my mind wanders to think about it.  I am really glad to know that I will have a plan of action prior to Thanksgiving.  I won't be left in limbo during the holidays. Whether the news is good or bad, I will be surrounded by family as I process the news.

Medically, there isn't much news to report. I continue to have symptoms of bleeding and pain, but it isn't as bad as last week. I did call VCU this week to check in and make sure that they have all the documents and reports that they need in order to finish the treatment recommendation.  The VCU tumor board meets tomorrow morning, and I'll get the results right after that meeting.

Emotionally, this week has been a roller coaster, to say the least.  In quiet moments, I find myself emotional and crying.  It sometimes doesn't seem real. It feels like there had to have been a mistake with the diagnosis. However, three oncologists don't have wrong results. Now, I just try to move forward and focus on ways to deal with this and make the best decisions for my health and our family.

I will post an update on the MRI results once I have them and are able to share them with everyone. I appreciate any positive vibes for the appointment tomorrow. I pray all of my family and friends have a wonderful Thanksgiving with people important to them!

LOTS of updates!

Well, friends, I have been a bit remiss in updating the blog.  Life got crazy, I wasn't feeling well, and we have been inundated with doctor's appointments.  With that being said, we have made some progress and are moving forward.

First of all the second oncologist David and I met with was quickly ruled out. The doctor kept us waiting nearly 45 minutes before seeing us, which started the appointment at a disadvantage.  He also was not as thorough or personable as the doctors at VCU that we really liked.  Finally, he didn't recommend a treatment plan that David and I felt was aggressive enough.  As we were leaving his office, the nurse was trying to schedule an MRI, and David and I gave her the "we are going to talk about it and call you back...."  which really means "please let me get out of here!"

That same afternoon we met with my hematologist to get some blood work done, to check iron levels in advance of whatever surgery is necessary. The hematologist is also an oncologist (though not a gynecologist oncologist and therefore won't treat this cancer). He was able to help us review the two opinions we have received.  He likes to treat cancer very aggressively and recommended removal of the uterus at this point, after completion of an MRI. However, he did recognize that uterine cancer is not his speciality, and if we are comfortable with the recommendation of the VCU doctor, then to proceed with that.  His caution was to not take risks with my health and to err on the side of caution if there is ever any doubt about treatment options.  The doctor ran my blood for the cancer gene, and told me that I do not have the cancer gene, which is great news. This means that I am not genetically predisposed for other types of cancer. 

At that point it was decided-- we are going to use VCU Massey Cancer Center for our treatment of the cancer.  The only downside to VCU is the sometimes lengthy wait time for scheduling procedures.  For example, the earliest MRI appointment that VCU had available was November 28, which seemed like too far away for me.  My hematologist offered to have his staff perform the MRI and transfer the results and slides to VCU provided they would accept them.  After MANY phone calls and negotiations, I was able to schedule the MRI for November 14, and I will meet with the oncologist on November 21 to get the results. This will allow time for the tumor board at VCU to meet and review the MRI results and determine an appropriate course of treatment.

Over this past weekend, I became ill and was having symptoms that were abnormal. Significant pain and bleeding caused me to page the on call doctor for advice on Sunday afternoon.  She was able to give me some remedies and recommended that I go to the ER if I got dizzy, but to follow up with my doctor on Monday. My doctor called me Monday morning and I went in to meet with him.  After doing an exam and blood work, he adjusted my medication and prescribed something for the pain that I was experiencing.  His main goal is to control the symptoms until we get the results of the MRI, and determine how we are going to treat the cancer.  The staff was really helpful and kind. Even though I left there feeling sick and deflated, I felt as though the doctors were taking very good care of me, and were taking my symptoms seriously, which was a huge relief and made me feel good.

During this process, I received a call from the hematologist, who told me that my iron stores level came back as low again.  As a result, I will need to undergo 2 iron infusions prior to the surgery to treat the cancer.  The infusions are not painful or difficult, but is just one more thing to deal with, and  one more appointment to navigate. (Also, they are most definitely NOT cheap, even with insurance!)

Today is Wednesday, and I am feeling much better than I was on Sunday. I am still having symptoms and pain, but am controlling it better and not feeling as drained as I did over the weekend. 

I also had my MRI this morning, which turned out to be quick and painless. The staff did a great job.  Per my agreement for this early MRI, I waited for a CD copy of the MRI images and hand delivered the CD to VCU.  Now, I just (not so) patiently wait for next Wednesday and the results that I will receive from the oncologist.  At that appointment, he will be able to tell us the stage of the cancer, how far it has spread and the recommended treatment plan of the VCU tumor board.

I feel as though I am in capable hands.  It is still terrifying at times, and the emotions come and go, but I am 100% confident in our decision to go with VCU and look forward to getting additional information so that we can begin to treat this cancer.

So, I'm sure this blog is less interesting, and more information updating for those of you that are interested in the progress and treatment options.  We should know more in about a week.

Now the hard part...trying to occupy my mind for an entire week.  There is absolutely nothing that I can do at this point. The tests are done, the results are being processed.  It is out of my control, so I need to focus on other things in life in order to keep my sanity. 

I definitely think I underestimated the physical and emotional toll that this diagnosis would take on me so early in the process. I am physically and mentally exhausted.  So many people have shown tremendous kindness during this process, from sending flowers, to magazine subscriptions, meals, cards and many other things.  I am thankful for them all.  One gift that stays in my pocket is a stone that just reads "Hope." I received this from two special friends and every time I feel it in my pocket, it reminds me to stay hopeful and try to stay positive, whenever possible.

I will update more as time allows. Thank you friends for caring enough to follow along and keep in touch.  I have been touched by friends I haven't really spoken to in years, but have contacted me to offer a kind word or note.  Each one is so appreciated.  Thank you all.  I hope I have great news to report after next week's appointment!

The Good, the Bad and the Ugly

While I remain extremely positive about the outlook of the treatment and eventual curing of this cancer that I face, emotions are definitely not entirely positive.  A wise friend suggested to me that if I am going to blog about my experience, that I need to share the emotional struggles that I face, along with my optimistic outlook overall. 

My mind has been fixated on the cancer diagnosis since the day I received the phone call from the doctor 10 days ago.  I find it difficult to think about much else. During those 10 days, the demons of anger, depression, guilt and denial have all been a part of my emotional process.  I know that each of these emotions are normal, but it doesn’t make them easier to deal with.

For days, I think that I was mostly numb, despite the occasional outburst of tears.  I was able to share my news with friends and family with relative ease. However, on one particular call to an old friend and mentor, I eventually broke down and that entire day opened the floodgates of tears, which were inevitable. I feared the cancer, the treatment, the prognosis and the unknown. I think the unknown is the hardest part for me.  Once I know what I am dealing with, then I can wrap my head around the treatment and next steps and be an active role in moving forward.

The strongest lesson I have taken away from this experience so far is that you need to be your own advocate in areas of personal health. I have known for nearly a year that something hasn’t been right with my body. The symptoms I have experienced are not normal. I was active in seeing doctors and trying to find a diagnosis. Doctors have run tests, and tried various medication treatments, but it has taken until now to receive the diagnosis. I can’t help but feel anger and guilt that I didn’t push harder or complain louder.  I wonder if that would have caught this cancer earlier. I don’t wallow in these feelings, but they are there and the bottom line is that doctors have amazing knowledge, but only I know my body and what I feel. I KNEW there was a problem and I should have been a stronger advocate earlier on in this process. I hope that other people will take control of their bodies and feelings and be pushy, loud and assertive when dealing with concerns related to their health.

I also feel a sense of guilt and personal responsibility that is hard to explain.  Cancer is an ugly disease that impacts people from all walks of life. However, this particular cancer is generally found in post-menopausal women. Why me? Why so young?  Did my years of obesity prior to my Weight Loss Surgery increase my chances of this disease?  This is possible, but unclear.  If I had taken better care of myself at a younger age, would I still be facing this?  The reality is that while weight can be a factor, there are also other factors that are likely contributors.  I made conscious healthy decisions for myself when I had gastric bypass in 2004, and subsequently lost over 200 pounds. I cannot look over the past as a “what-if” I had done things differently. I can only focus on things that are in my control now.  This does mean that I need to make active changes to better the quality of my life and choose healthier options for myself. I need to remind myself that health is an ongoing lifestyle choice, and one that needs to remain at the top of my priority list, no matter what other important things arise. I am unable to take care of others, if I don’t first take care of myself.

I struggle to find the words to explain the emotions I have felt. At times, I find myself feeling melancholy and depressed.  I sometimes feign a smile or try to focus on the positive, but I would be lying if I didn’t recognize the depression and sadness that I am feeling. Even with a relatively positive appointment from the oncologist, I still can’t find myself to be excited about that, which was really bothering me. I think the reason is that even the BEST case scenario, while ideal, is still cancer. I am praying for the earliest and most treatable version of this cancer, and I believe that will happen. However, even if those prayers are answered, it still means I have cancer, which is a difficult pill to swallow, no matter how positive the prognosis.

This past weekend, I found myself surrounded by friends on several occasions and having a great time. I had amazing tickets to see my beloved Redskins, and spent quality time with some dear friends. However, at several points during those fun experiences, I found myself noticing people around me, having fun and seeming to be carefree.  I longed to feel carefree and joyous. I still felt this pit in my stomach, even during fun times.  This cancer lurks over me in all that I do. When that occurs, I catch myself and try to reclaim the positive aspects when possible, but allow myself to feel the sadness and frustration as well, as that is all a part of the process.

Please don’t take me wrong, I still remain positive overall, but to paint a true picture of my emotions, I would be remiss to not include some details on the struggles I am feeling and the down days and times that come with receiving this news and navigating the unknown future.

Much love to all of my friends and family, and their continued support and prayers. Every note, card and message touches my heart deeply and means more to me than I can express.

First Oncology Appointment

Of course, sleep was difficult to come by last night.  My normal struggles with anxiety and insomnia were only exacerbated by the stressful day ahead. All night, my mind raced with what the appointment would entail. Any of you who know my style, know that I was armed for my appointment with dozens of questions to ask the doctor and his staff. I did my research and wanted to be sure that I took full advantage of the time with the doctor. I am a list-maker to the core, and this situation is no exception.  My list of questions was my comfort as I entered the appointment. I knew that if I was overwhelmed, I could rely on the list to keep me on track!

When David and I arrived at the VCU Massey Cancer Center, it was a surreal feeling to know that I was there as a patient.  I found myself flustered when I checked in at the information desk and said I was there for an oncology appointment. Of course I knew the reason for my appointment, but there is something about saying the words out loud that makes it very real.

I immediately got a positive sense of the facility and the staff. Everyone that we interacted with was so kind, helpful and made me feel at ease, during a scary moment.  After sharing my life history, intake and all the normal activities of a first doctor’s appointment, I met with the doctor and his staff.  

The doctor confirmed the pathology report from the lab, and said that the cells are cancerous. However, the staff members at VCU are going to rerun the slides in order to do an additional confirmation, as standard hospital practice.

Due to my younger age, I was VERY relieved to hear that the doctor does not want to rush immediately to a hysterectomy. There is still a possibility it will be necessary, but there are some steps that are important in the diagnosis process before making that determination. It is also comforting that while uterine cancer is most common in post-menopausal women, this doctor has treated several cases of younger women with this diagnosis.

The most important next step in the cancer staging process is to schedule an MRI.  This will occur in the next two weeks and will allow the oncologist to determine the specific locations of the cancer.  The MRI will allow him to see if the cancer is contained to the uterine lining, or if it has spread to the walls or other surrounding organs.

If the cancer has spread anywhere outside of the uterine lining, removal of the uterus will be necessary to successfully treat the cancer. Follow up treatment after the uterus removal would vary depending upon the spread of the cancer.

I did get a glimmer of hope during the appointment.  If the cancer is contained SOLELY to the inner lining of the uterus, there are treatment options that would not require immediate removal of the uterus. If the cancer is only in the inner uterine lining, there is the potential to surgically remove all cancer cells, and treat with hormones. This treatment would occur for several months while monitoring whether or not it successfully treated all cancerous cells.  If the stars all align in this perfect way, the potential for a window to have a baby MIGHT be possible. Provided the surgery and hormonal treatment are completely successful and there are no health concerns for me, a baby might be possible.  Afterwards, a hysterectomy would still be recommended to avoid longer term potential for cancer recurrence.

Both David and I left the appointment feeling more optimistic than we intended.  The prognosis for treatment and cure is very good. In the near future we will know the extent of the cancer and which of the treatment options we will choose. 

This was our first opinion, but I think the doctors and staff at VCU will be hard to compete with.  The experience there was excellent. We have our second oncology appointment Wednesday with another potential doctor. After that appointment, we will move forward with treatment as quickly as possible.

My fears and anxieties are still here, but knowledge and progress all help make those more bearable. I am trying to work on being comfortable with ambiguity, because nothing is going to be fixed overnight. I think the appointment today went as well as it could have, which is wonderful news. My emotions still have me kind of numb, waiting anxiously for the upcoming tests to know what we are up against. 

In the meantime, we have moderately good news from today (given the potential options), and a world of supportive friends and family to be thankful for.

Initial Diagnosis

I have never entertained the idea of a blog before. However, with recent events, I feel like it might be cathartic for me to put words to my emotions and experiences. I know that when this journey with cancer is over, I want to be able to look back over these blogs and remind myself how I felt and what I experienced at the different stages of diagnosis and treatment. For those that wish to follow along and share in my journey, you are welcome to do so. I make no promises of witty comments, or even that it will be interesting! You will see the random thoughts and ramblings that I have, along with the treatment updates and information that I learn along the way.

CANCER...a word that you never want to hear from a doctor. Hearing that diagnosis over the phone was like a punch in the gut. Fortunately, my husband was with me to hold me as I cried. Through my tears, I tried to take in all of the information that the doctor was sharing with me. Before I get too far ahead of myself, a little back story is in order.

For nearly a year, I have been struggling with issues related to anemia and a bleeding disorder. Numerous doctors have investigated, run tests and been unable to diagnose the root cause of the issue. While searching for a diagnosis, I was hospitalized for severe anemia, and required blood transfusions and several months of iron infusions. Since David and I hoped to have a child in the future, my doctor referred me to a top fertility doctor in Richmond, who has the ability to diagnose and test much more extensively.  I LOVED this doctor from the start and had hopes that he would be able to resolve the issue.  After several tests, it was determined that I needed to have surgery to remove uterine polyps and a thickened lining. This is a fairly routine surgery, and it occurred without a problem. The doctor was able to perform a hysteroscopy and a D and C to remove all items.  Everything looked great and it seemed as though the root of the issue was finally resolved.

However, a phone call on October 29 changed everything.  The surgeon called and said that he had received the pathology report from my surgery the week before. The cells removed from my uterus showed that I have cancer in my uterus. He quickly told me that this is an extremely treatable version of cancer and he listened to me as I cried.  However, I can only tell you pieces of what he told me during that call because I was in such shock. He provided me a referral to the oncologist, and connected me directly with the office, where I promptly made an appointment.

It has been nearly a week since the diagnosis, and the emotions have been nothing short of a roller coaster. I know that God has a plan, and I feel very optomistic that things will work out, and this will be treatable, but that doesn't make it any less scary or overwhelming. It turns out that uterine cancer is generally found in post-menapausal women, and that contributed to doctors having a harder time diagnosing the cancer, since it is so rare for someone that is my age. All of my doctors have never seen this cancer in someone under 40.  I guess that means I'm a record setter for their practice, though that's not really a record that I would want to hold. :)

Treatment for this cancer can vary so much and will depend upon the oncologist appointments that I have next week.  Generally, treatment does include at least a partial hysteroctomy, though that is not a guarantee.  Raditation is a likely treatment, and chemotherapy is only necessary if the cancer has spread to other areas, which will be determined in a future procedure. I am trying to educate myself on all of the possible options, without anticipating the worst case scenario, or doing too many dreaded google searches for information!

The cancer alone is scary, but one of the scariest things is the likelihood that I may never be able to have children, at least not biologically.  I know there are many other parenting options, but I have always dreamed that I would be a mother. The outlook for that possibility has now been called into question. This issue alone has put me through emotional turmoil throughout the week. David has been my rock, and I don't know what I would have done without him.

I am so blessed, and that has been obvious throughout this week. The countless visits, phone calls, messages, deliveries and acts of kindness remind me how fortunate I am. I don't know how I will ever show my appreciation to those people. In addition, David has been exactly what I needed this week. He has been everything I could have asked for. He has waited on me, made me laugh, allowed me to cry, and helped me prepare for upcoming appointments. Most importantly, he has reminded me that we are a team. Whether or not we are ever able to have a biological child, my health is most important and we need to take care of that first. As we go through this journey, he will be there with me, along with friends and family.

My goal is to focus on all of the positive things that I have in life. While I know I will have setbacks along the way, we can deal with them, one step at a time. I plan to surround myself with positive people and influences in my life that will encourage and lift me up, and help me get through this. 

I have read that life is 10 percent what happens to you and 90 percent how you react.  Well, I clearly cannot change the cancer diagnosis, even though I did ask the doctor if they double checked the results! I have control over how I deal with it, the positive influences in my life and the faith that I have in God that treatment will provide a cure.

Thank you to all of my friends and family, for being the support that I need, and offering that support without me needing to ask for anything.