It is hard to believe reading this back, as I mentioned in previous posts, (I have not read these entries since I wrote them almost 5 years ago) that so much has happened. We have lived day to day for the past 5 years without looking forward at all; we just could not. Shannon had many dark days and nights during this time and for the years to come. The lymphedema that she was left with, along with the hot flashes of menopause are the reminders of her diagnosis and treatment. These were hard days for me looking back. In hindsight, Shannon really should have been referred for counseling from a trained professional to help her deal with her emotions and her life. I was not equipped to be her counselor, I could be a lot of things, but providing psychological support was not one. Men are fixers of everything – or so we think. We get our “toolbox” out and want to fix EVERYTHING. I could not fix Shannon, try as I might. There were days that Shannon was just done, and she confided in me her darkest thoughts, which tore me to the core. I may have mentioned she needed to get help, but I did not do anything about it because there were good days too. For anyone that is reading this and is going through this or has gone through this, you can relate. As a caregiver, you need to care for your warrior, but you MUST CARE FOR YOURSELF TOO. I cannot repeat this enough. Between the lines of these posts that I am writing is my story, which I have yet to tell and look forward to exploring with you in the days, weeks, and months to come.
Journal entry by Kevin Beasley — 9/12/2013
It has been awhile since I have posted an update. We have been trying to return to a sense of normalcy. Let me catch you up on the last month or so.
Shannon had her one month follow up with Dr. Johnston, Radiation Oncologist. She had been experiencing swelling in her legs that we thought was related to the radiation/chemo treatment. The doctor confirmed this, and recommended Shannon go on a water pill, LASIX to help with the fluid retention. He said he was not able to prescribe, but her PCP or Gyn Oncologist should be able to. We called Dr. Boardman’s office and she prescribed Lasix and suggested she go to her PCP to get a handle on her elevated blood pressure. Shannon’s blood pressure was perfect during treatment,120/80 most days. Her blood pressure now is 140 / 90. We were set to go the beach, the much-anticipated beach trip, on Saturday August 17th. We went to the primary doctor to get a handle on the swelling and to check in as her blood pressure was elevated. The doctor ran all sorts of tests. The labs came back later in the afternoon. The doctor called to say that Shannon’s hemoglobin was 5.5 grams per deciliter; if you remember the goal for chemo was above 10 grams. Needless to say, it was too low and they advised we go to the ER as it was 4:30 on Friday. Our experience with blood transfusions was painless as she had one liter given during her treatment. It took about an hour with her PICC line. We expected a little more time given going through the ER but we really did not know what we were in for.
We opted to go to Memorial Regional near our house rather than driving 20 minutes to Henrico Doctors where her Gyn Oncologist office is and where all Shannon’s records are in the system. Her primary doctor assured us she would call the ER and let them know we were coming. We really thought that would make a difference. We got to the ER and did not have to wait long before we were seen. She proceeded to go through Triage like she was coming in with a broken arm; blood pressure, weight, history,etc. We had to go through EVERYTHING, which we understood. To make a very long story a little shorter. Shannon had to be admitted to the hospital to administer 2 pints of blood. She did not get her blood started until about 10:00 PM that night. Keep in mind we were supposed to be riding to Pine Knoll Shores for 4 1/2 hours the next day.
The miracle neighbors the kids have been playing with, The Jett’s, asked if Sydney and Jack would like to spend the night at their house on that Friday night. It was truly a blessing. They were distracted as we really tried to downplay the hospital stay with the kids. They have had enough to deal with this summer to be worried again for their mom. Shannon was fine and endured a little more picking and probing and we finally left about 1:00 PM on Saturday.
My mom was able to move our stay to Sunday to Sunday which was a relief. We headed to Pine Knoll Shores on Sunday morning and arrived about 3:00PM. We had a wonderful week, spending time at the beach with family. The Longs, Burlees, and Horner clans were down. The kids even met some new friends that were neighbors of Paula and Joel Long, the Woods, Blair, Thomas, and Russell. The kids had a blast going on a boat ride to Cape Lookout with Lisa Burlee and her son Billy and their new friends the Woods. Shannon was really having difficulty with her legs swelling and tried to have as much fun as she could under the circumstances. She went shelling almost every day, enjoyed the beach as much as she could. I know she was happy to be there but longed to not be in so much discomfort every night; the swelling gets progressively worse throughout the day into the evening. The swelling has really been an issue for her; worse than the chemo and radiation if you can believe it. She was down because she envisioned this being her life forever.
To fast forward, the kids have returned to school which allows for a much-needed break for Shannon during the day. She is able to rest up and be ready for snack and homework when the kids get home at 2:45 pm.
On September 10, we had her 3 month follow up with Dr. Boardman, Gyn Oncologist that performed her Hysterectomy. She used the word remission, which is a blessing. The doctor reassured Shannon that she LOOKS GREAT! Everything looks great and she needs to have patience. Shannon is in menopause and has been experiencing hot flashes. We knew this would happen as Shannon chose to not to have an additional surgery to move her ovaries with no guarantee that they would not be damaged during radiation. The surgery would have delayed the chemo/radiation treatment and Shannon did not think it was worth the extra time and the benefit was not there. She is now on hormone replacement which should end the hot flashes and she should be back to normal in a few weeks. Dr. Boardman reminded Shannon she should start feeling back to normal from everything in 9-12 months post treatment.
On September 11 we had her first appointment for Physical Therapy with a lymphedema therapist. Due to the lymph nodes being removed, the radiation and chemo, no one really knows why one person has lymphedema and another does not. Irregardless Shannon has secondary lymphedema. The lymphatic system carries a clear fluid called lymph towards the heart. When the system is compromised fluid builds up in the arms or legs depending on where the lymph system is compromised. For Shannon it is her pelvis, legs, and ankles. Let me point out, this was caught early and with exercise, massage, and compression she should be able to have a normal life. She will have to work at it daily, eat right, exercise, but doing all this she should be able to do everything she would ever hope to do.
I would like to ask for prayers for Shannon that the treatment she is receiving for lymphedema helps her both physically and mentally. She was very down for the past two weeks prior to her doctor’s appointment. Shannon is not working now and probably will not for the foreseeable future.
Prayers for Jack and Sydney are that they continue to do well in school and for them to understand and be comforted that their mom is doing well and will be there for them.
I will even ask for prayers for me that I am able to provide for my family during this time. Without the help of Shannon’s parents and my parents we would not have been able to make it financially to cover our basic living expenses, healthcare, etc. We have experienced tremendous financial stress before the diagnosis and ongoing. Shannon is unable to work, and I am 100% commissioned and sales are low as to be expected in a new venture. I am rebooting my business as well as applying for full time work to provide for stability.
We would like to ask for prayers for our parents who are leveraging their own retirements to help us during this very difficult time.
I will say through all of this we continue to believe in Jesus Christ, and that God has a plan for us. I wish I could understand what this plan is but all we can do is to be faithful to God and continue to believe in him. Our faith is unwavering!
I will continue to update this post as we have new info to relay.
Shannon has worked the past few weeks on thank you notes, but I also would like to thank everyone for their kindness, prayers, notes, gifts, etc. We are truly blessed to have a great support network of family and friends!!