Well, another few days have elapsed and it is amazing me just how quickly a "roller coaster ride" called medical, can turn your world completely upside down and inside out. And have I mentioned, I hate roller coasters?????? Thursday I made arrangements to take lunch into school for my 4th and 5th grade kids. I baked them cupcakes and went in to see them. They were wonderfully loving and caring. They wanted to know when I would be returning to teach them; they were upset to learn I needed more surgery but they want me well enough to return and stay. They hugged me and kissed me; told me they love me and missed me upon entering lunch and exiting to their next class. I was blessed!!! It was so great to be with them and even the 2 girls brand new when I had to leave, hugged me and told me, In English, I love you; Come back soon
I'm sure I will be repetitive on some of these issues, however, in order for me to be a verbose as is my general pattern, I will repeat some. Beginning with my niece, great niece and nephew coming to the house to make Valentine cards and messages with me. I enjoyed that time (and especially the company) so much. Right now, it seems like it has been 100 yrs ago. The day after I was to go see a movie I have been looking forward to seeing ever since I found out the book was becoming a movie. I made arrangements for my sister in law and I to go for lunch and to see the movie, however, the night before I was unable to sleep AT ALL.
Generally, I sleep 2 hours, wake up, sleep 2 hours, wake up, sleep 2 hours, wake up, etc....until it is time to rise and shine.....When I woke after not sleeping I found I had slept a total of 1.5 hours. Not enough for even the strongest toothpicks to hold my eyelids opened. I called my sister in law to cancel on our "date" and she said she was going to meet her husband for lunch and did I want her to bring me lunch. I said that would be fine... just bring me a chicken Cesar's salad without the dressing. She arrived about an hour later. I ate the chicken (not the lettuce) and shared with my cat, Cal, who is very old, ill, and just fur and bones (cat food makes him sick and he eats it like a pig). I know he will not be with me much longer which will break my heart but he is old and has been well loved. His big, fat, nasty sister will live, undoubtedly for 150 yrs.
My sister in law stayed with me a couple of hours, keeping me company. I am alone most of my days since my roommate is at work, my friends are all teachers and can't call, and my relatives for some reason, have an aversion to telephones or visiting. I don't know exactly what the problem is but some of my family members do not like visiting "sick relatives" though they will spend hours at a hospital with a friend. (small amount of sarcasm....sorry). While my sister in law was here, we discussed a very lengthy visit on the phone I had with the insurance representative RN assigned to my case. She asked all kinds of questions about my general health, mental health, and eating habits. They wanted to know about the upcoming surgery and then discussed why I was going to an oncologist NOW instead of before I had surgery, as is general practice. I had to explain to her that my primary care physician was demanding it and that he had not been sent any reports about my surgery, the infection or the therapy. Now the insurance company is also advocating for the visit to the oncologist.
I have to explain that prior to surgery, I informed the drs that I wanted a certain oncologist whose reputation is exceptional. Both surgeons agreed, though they knew of her, said they would recommend any others if I chose a different one. This gave me the impression that when I had all the biopsies, surgeries, etc, they would call her in to talk to me and do any treatments necessary (chemo, radiation, hormone therapy). Well what I have found out, that it has NOW become the responsibility of the patient to schedule ALL drs' appointments regardless of whether they have a referral (required by most insurances) as well as going to each surgeon and requesting they send reports of what they have done to me so that my primary care physician is aware that his patient had cancer surgery?????!!!!! (Big upside down loop on the roller coaster).
As I told my sister in law this, I began to cry....for whatever reasons, it seems that my tear ducts never close.... and at the drop of a hat, or a hug for no reason, I am becoming Niagra Falls. I cannot seem to stop crying. I thanked my sister in law for "always being here" for me; always checking on me; always willing to do things with me, even if I renege at the last minute depending upon my sleep habits or pain levels. She said I never needed to "repay" her or my roommate for their love and kindnesses but I feel there has to be some way to say thank you without using the hollow sounding words. I was sobbing so hard I could not stop. She asked me what the RN said about talking to a psychologist and I informed her that I told her after I talk to the oncologist, I would update her on my decision at this point NOT to go to a psychologist. As long as I am blogging (highly encouraged), going to support groups (also highly encouraged), and I am not staying in bed (how I wish) and not joining the human world, that was fine. She would wait for my decision to see how I feel later.
Anyway, after I picked at my salad, my sister in law and I made plans to go to the movies and lunch today. Yesterday I had an appt with my gastro dr and was encouraged NOT to take the pain meds and xanax since the diabetes has effected my stomach which does not digest food quickly and any medication of this time will make digestion even slower. She also checked the surgery and said "who was the surgeon that did this?" She could not believe how high and hard the one breast is and how off kilter the other one is. I was having pain but figured I would "tough it out"....but by 4:30 this morning, I was still wide awake. I finally took a pain pill, stuffed pillows around my body so I could try to be comfortable. I slept until 9:15 when awakened by another insurance RN calling from another part of the country with a "short" survey about my physical health, my mental health, the oncologist and upcoming surgery.... apparently I am not the only repetitive one in this world.
She basically said the same things as "Lourdes RN" did and the other RN (can't remember her name) but this one Debbie RN encouraged me to take the medications ordered; not to think I was going to become addicted to the drugs and after I am discharged from the dr's care, I would no longer be prescribed the meds. She encouraged me to walk and I told her if I walk a lot, I get bursitis in my hips. I told her I had fibromyalgia and the treatment was cortisone injections, however I cannot have them because of bad reactions I have cortisone, which requires cauterization due to heavy nose bleeds. Then she asked how my hearing and sight are. I told her I wear glasses and my right ear has a 60 % hearing loss. All she kept saying throughout the short hour and a half survey was oh my goodness. You have a lot going on. She informed me she would call me back next week after the oncology visit
I tried to lie back down for a little while longer, however the phone rang 3 more times. The insurance company has extended my short leave of absence until March 1, when it becomes long term and I must begin paying $600/month for my insurance; I finally gave up trying to sleep and dragged my body to my recliner. I did not feel like eating so I just sat down, put my blanket over me, turned on the Disney channel and promptly fell asleep for about an hour. I called my sister in law and cancelled our lunch and movie date (I felt badly doing it but frankly I did not feel good; bad headache; both breasts were hurting a lot and I took a pain pill). She was fine with it but I'm sure that if I plan another play date, she is not going to believe me.....
I did get up and check the mail. NO bills (thank you God) but there was something wih my name on it, from my father...... get ready for another flip upside down..... He sent me a folded up index card with he words, Don't cry when you get this. I love you. Inside i was a check for $400.00!!!!! As you full well know by now....crying is something I have NO control over. I have not called him yet because I want to thank him without tears (sorry dad...can't do that). My roommate came home; told me she was going to pack for her weekend of volleyball. We would go to dinner before she went to Miami.
We went to dinner and I came home alone. I am alone every day except for the occasional visit from a family member or friend. Even at night I am alone most nights because of volleyball. I was beginning to feel sorry for myself. But I turned on Facebook and found many friends (whom I have never met) encouraging me. Some of those friends are those of my niece, Heather, who just had her implants implanted......(As she says the twins are perky and doing well...... I've decided mine are fraternal....don't look a bit like one another)..... Her friends are sending me messages; telling me that they cannot wait to meet me whenever I go to TX to visit her. I cried. THEN my niece Heather, texted me to inform me that my niece (Heather's daughter) who is graduating from high school this year, wants to take her own money, use her next 3 day holiday and fly HERE to spend time with me!!!! How many 18 yr old kids do you know who would do that?????? Yes I cried.
As I mentioned previously, my world is a living roller coaster. Full of ups and downs and many tears good and bad. After I got the text and stopped crying, I telephoned my sister in Pennsylvania, Judy. She is my "twin", though 5 yrs old and we have different mothers (who coincidentally look alike...so Judy and I do also). We have the same warped sense of humor and it seems we are in competition for who can come down with "strangest medical ailment known to man". She is the bionic woman, with metal in all her joints and has had huge hard times for many years. We cry together and laugh together. She encourages me to keep going and I do the same for her... My phone went dead tonight while spending 2 hours on the phone with her...laughing and crying (what else). She loves Mesut because he makes me so happy and as she said God gave us this love and it only gets stronger so hang on and we will be together but she is upset also because I will need to move to Turkey or another country to be with him, unless the US embassy finally issues him a visa...... Large miracle needed.
When I finished the phone call, I went back on Facebook and my nephew in law's mother (I barely know her) had read my latest update on my health and wrote to me offering me any help she could give during this time and after my latest surgery. She said she had no idea I have been going through the things I have experienced and wanted to do whatever she could to help out....pick up prescriptions, bring me food, help me out medically (she is a home health aide), ANYTHING. I was shocked. She is not a relative; I barely know her yet SHE offered to come help me anytime and gave me her phone number. My own family is not doing that!!!! Just another loop in the roller coaster.
I don't know what will happen next but I can assure you God will have His hand in the middle of it...and one day, I will be back teaching my kids and be able to retire and move to be with the man I love with all my heart. Ups and downs, Yes..... painful, yes!!! Feeling crazy...definitely.... BUT through all of this, I know God has a plan for me. He loves me and only wants HIS best for me. I do not blame God for the cancer, or any of this confusion. I thank Him for the blessings HE is heaping on me, even though I have moments of mental anguish and lamenting (so did many mighty men of God). All I can think is that He must have something extremely wonderful, exciting, and purposeful, because HE is keeping me alive and "fixing" all things wrong.... He is teaching me to trust HIM and not to put my trust in mankind....I will always be disappointed if my faith is in people..but never when my faith is in God. And as Mesut always reminds me... God is BIG God!!! He is BIGGER than all troubles. AMEN!!!!