Sorry for not posting in awhile. I have not felt well, not my normal self.
Update: Rick has made major progress the last 2 weeks, getting stronger everyday. He still tires easily, which is expected. Today he walked the big block in our neighborhood, just shy of a mile. Yesterday he helped with the laundry, he is getting back to his old self. Praise God!
I on the other hand, don't know what's going on, perhaps depression, or just sick and tired of all the disruption cancer has caused in my life. It's been a strange month. I am scheduled to go back to MDA May 24-25. I have been very hesitant to make travel arrangements, hoping the United Airline incident would drive the rates down, so far not the case. I don't know what it is, but something kept me from proceeding.
Being in accounting so many years, I always did our taxes as soon as we got the necessary documents, not this year. I kept putting it off, I knew something was not right, why was I so hesitant - that's just not me. I did them on the 16th, Mom's were fine, she got a refund, not much yet she did not have to pay.
Ours were a different story, Uncle Sam royally kicked our butts. I did them on 3 different online tax companies, just to make sure what I was seeing was correct, sure enough it was. Rick and I went into panic mode, what are we going to do? Heck if I know. Tried to sleep, don't know why I even bothered. I looked at everything we had and still came up short. I posted on my YouCaring page that we were in dire need, it did not have any response.
After writing the post, I had to make some serious plans. I decided that the amount I had set aside for my trip to Houston would be enough and if it means not going for follow up, then so be it, my cancer has already caused so much financial hardship. I'm seriously considering not to continue treatment. We did not pay our mortgage or other bills. We have had our share of stress and the last thing we needed was the IRS.
Monday, the 17th was round 5 chemo, I almost cancelled, then decided to go since I have not felt myself. Turns out, my platelets have been low, too low for chemo, so they sent me away. I took that as a sign, that it may not be meant for me to continue.
Today was round 5 chemo rescheduled from last week. Turns out my platelets last week were 66k and this week 68k, so no chemo. I asked why I was not given blood to bring it up, my nurse said that's what Dr. David said and hopefully it will be up next week. She also said she was going to fax my labs to Dr. Eng for her input then asked me if I had Dr. Eng's fax, ironically I had just requested it last week. It was a stormy day today, so I could not get a wifi connection. She came back and said she found it on MDA's website, I asked her for the number.
They also asked me to contact Dr. Eng and let her know they had faxed my info and what does she suggest, which I did, I left a v/m and should hear from them tomorrow. Once home, I verified the fax number I had from Dr. Eng’s office and it was not what she gave me, so I called them and told her to fax it again to the correct number.
I just don't know… Why my Dr. here is leery, I guess since she is following Dr. Eng’s recommendation and protecting her license.
I just don't know… Is this treatment plan worth all the sacrifices our household has made?
I just don't know… If I can take much more, this is not quality of life.
Wow, where do I begin? I have covered a lot of territory since I left home Tuesday: Sugar Hill, Ga. to Atlanta, Ga. to Houston, Tx. Then rinse and repeat, lol. I would not change a moment of the entire adventure for anything in the world, well… there may be just one that I would like to have the opportunity to do over…
My drive Tuesday was perfect, no traffic jams, no stop and go, smooth sailing all the way. Kathlee can relate, that does not happen often when traveling I-20/I-285/I-85. Everything on our quest was timed perfect, we were on time every time. Having Shawn with me was a blessing, he lived in Houston 8-10 years or so ago and has been in Sugar Hill 8 years, so traffic was nothing to him. I am so proud of my son. I can honestly say we raised a fine upstanding, good looking young man, a true southern gentleman like his father. Who is Rick, as it is referred to these days, he is my baby’s daddy, lol. I have never used that term before, yet have heard it so many times. I am old school, we refer to Shawn as our son.
I recommend to anyone traveling by air, utilize the wheelchair, it is the way to go. I was pleased with the service and only had one little snag in Atlanta. My attendant a nice young lady, who may have been in training, took us right to the front of the line at the security gate. She gave my purse to Shawn and came back for my shoes. I walked through the scanner, moved out of the way and stood there waiting for Shawn. The TSA lady that let me through, turned around and said why are you standing there? Me: I am waiting for my son and wheelchair… Her: why are you barefoot? Me: because the lady with the wheelchair took them. Her: she wasn't supposed to do that. Then the wheelchair attendant told Shawn, I don't know why I had her take her shoes off, so she proceeded to hand them to me. The TSA lady said NO! Put them on the belt, which she did and I was finally reunited with my son, purse and shoes. The attendant was so apologetic, I was ok and laughed it off.
That should have raised a flag, but didn't, because we made it through. We finally make it to the gate and she parks me upfront, took my ticket and they scanned it. I gave her a tip, she was so embarrassed about what happened, I assured her no harm done. We have about 10 mins b4 boarding, Shawn went to get us a drink, he's so sweet he bought me a memory foam neck pillow, which he swears by- it's very comfy. While I am waiting, a gentleman for United was going to take me into the plane, I told him not yet, my son will be here in a moment and I don't want him to think he lost me before takeoff. 5 mins later the gentleman tries again, then I saw Shawn and they wheeled me to the door of the plane. I was wow’d by the whole process.
We found our seats and made ourselves comfortable. This plane was United’s new plane, smaller yet more leg room and only 2 seats on each side. We put on our neck pillows and chilled. We had a rookie pilot, it was a very bumpy flight and there was turbulence, it was ok, we made our flight and all was well. Shawn fell asleep, I watched and wondered why someone would pay more for 1st class, I could not justify the cost, like I said I'm old school. About 30 mins outside of Houston Shawn woke up and I told him I was going to the restroom.
Oh I forgot to mention my hat, a nice white straw hat with a wide brim on the front, a little bigger than a baseball cap. I'm not one to ever have worn hats, especially now because my head sweats. This is a nice hat that got a lot of compliments, I got my $5 out of it.
Anyway, I am going to the restroom, I stood up and hit my head on the overhead, I couldn't see it because of the hat, I shrugged it off and moved into the aisle, next thing I know – bam bam bam – down I went hard. So hard every eye on the plane was on me. I looked at Shawn who just woke up and is trying to get his seatbelt off, I shrugged my shoulders and out my hands up like oh well, and just relaxed into my new position. Next thing I know, there are hands all over me, people helping me up. An older gentleman behind me had me under my arms and I could not find my feet, I finally found them, lol and planted my foot so I could raise up. By this time I know my face is red, my pride had been humiliated, all along I am trying to figure out what the heck happened??? And I have to pee, now more than ever. The flight attendants escorted me to the bathroom. When I turned around the entire plane was looking at me and I knew I had to say something, me being me said “now that I have everyone's attention, I just want to say be careful when wearing a hat with a wide brim on an airplane” took the hat and threw it my seat. Everyone chuckled and were so kind. I get into the restroom and all I want t do besides pee is CRY, but the attendants were outside and they would hear me, so don't do it, don't do it, I didn't, when I was done, they escorted me back to my seat.
At my seat is the hat, oh what am I going to do, I can't wear it, no telling what will happen. Then it hit me, I grabbed the hat put it on backwards and the passengers started clapping. Shawn was like mom are you ok, I said yeah, but my pride is shattered and I want to cry but I'm not going to, he put his arm around me and held me, no tears, I refused to let them see me sweat. I told Shawn that I have no clue what happened, it was like my legs just gave out. He then informed me that it was not my legs, it was the rookie pilot, as I got up, the pilot was turning as he was ascending, the plane was at a 90 degree angle as we were climbing, so when I stood up straight, I was not upright, I did not have my balance. I said oh honey I love you, thank you for trying to make me feel better, I know it was me. The man behind me sat forward and said ma'am, your son is right, the plane was almost sideways when you got up. Oh I wanted to cry, but didn't. I thanked the man a dozen times I know.
Finally, we are in Houston, I can't wait to get off the plane. We waited for everyone to get off before us, just n case. We make it outside of the plane, after everyone who walked by us asked if I was ok. There is my wheelchair YAY! Not so quick, there is a younger lady with a pair of cowboy boots on who needed a wheelchair and all we heard was are you Ms Folk? This is for Ms Folk, over and over. I speak up and say I am Ms Folk, the lady is still in the chair, so me being me, said I'm ok, I can walk. They told the woman they had sent for another wheelchair that this was Ms Folks she refused to get up. Then the new me came and I went to it, I just wanted off the plane. In addition to the wheelchair waiting for me, the passengers who had connecting flights, had lined up waiting to get their luggage, so they are all looking at me and the booted wheelchair lady. The attendant would not allow her to have my wheelchair, even tho I was going to take the other. Finally she got up and I was taken out of the plane. My new wheelchair attendant was an older lady who loved her job, she flew me through the airport, Shawn walks fast he looked up and he had to run to catch us. She wasted no time, got me out there door, I have never been so glad to see pavement. From there things fell right into place, and as Shawn said so did you Mom. Moral of that story is the wheelchair at the airport is very effective for getting where you need to be, to be on the safe side, do not, I repeat, do not wear a brimmed hat that interferes with your view.
Dr. Eng is truly the gold standard in anal cancer. Shawn and I knew the moment she entered the room is was good news, she was beaming with excitement. She cut to the chase, you are responding and the CTScan shows significant shrinking of the spot in the lung, it is referred to on the report as the metastatic disease in lung is now cystic, have not looked that up to see the true meaning, other than it’s a good thing. The spots in the liver have never been called metastatic by MDA, they had a major significance of shrinkage! She cut my dose a tad, to help with the fatigue and neuropathy in my hands and wrote an RX for Lyrica for the neuropathy. She said when I return in May that she will then place me on a maintenance dosage, we did not discuss that, due to the excitement.
Her concern was that my platelets have been low and that my dr has NOT been sending her updates, she thanked me for bringing my flow sheet showing my numbers. I told her I have chemo Monday and will address with Dr. David sending updates, as Dr Eng would have addressed the platelets and the neuropathy. That will not be a problem, I feel Dr. David is overly cautious since she is following someone else's recommendations, Drs these days are so concerned about protecting their license. I truly feel when she sees that's I'm having a great response to the treatment, she will become more proactive. I want attention brought AC and I am going to get her on board.
Yesterday, I was so excited and still am with the good news. Part of my objective in this quest is to find HOPE for other AC’ers who have been told by the standards, there is nothing more that they can do. Today, may have been the day that someone like me had their first visit with Dr. Eng as I did in December with NO hope and left her office knowing there are options. She can't discuss the stats of the trial since it is active. Today, she can speak freely about me, not by name, but that this patient had great results and is responding to this regimen. That alone, is worth all the agony, depression, frustration, headaches with insurance, work, loss of hair and the hours chained to the toilet, if just one person will have HOPE and that will lead to more and eventually a cure. I am grateful for the great news. For me, I put others before me, I will give you the shirt off my back or my last depends if needed. Knowing I helped someone is the ultimate reward to me, it's priceless.
So much was accomplished in my short stay. I have one regret, that I was so looking forward to, my airplane escapade and such a tight schedule did not allow me to meet and have a short visit with Linda. I was so looking forward to it. I know our God is an awesome God and he is working miracles in our lives everyday. He knows how much that means to me and he will see that we meet, if not in Texas, then somewhere between North Augusta, SC and Florida. With God all things are possible. I for one believe, so I know it will happen, in Gods time.
Catching up on BFAC posts, reading that we had good news for a change is such an inspiration and gives us all HOPE. Jean sharing that she is looking at being CURED, is an answer to so many prayers. It's also a reward for Jean taking the time to reach out to all of us, and share her experiences which are always insightful and so full of compassion. We all are AC’ers and we all were led here, together we stand. I love “SAVING URANUS” I so want to bring attention to AC to spare many from this steadily rising cancer. I will do whatever I can to bring attention. As I said in my reply to Jean, I'm not a hat person (now you know why) yet I will be happy to cover my bald head with a Farah Faucett wig – anything – even show my butt if needed.
I left Houston with excitement and a purpose. Now that Jean has such a promising future, I am showing progress, and so many others of us are NED, we are the living proof that there is HOPE and options available. Together we can be the voice of Anal Cancer.
I'm grateful for so many things, BFAC has been my saving grace, the recommendation of Dr Eng, your caring, thoughts, prayers, advice, encouragement when I am in that dark place, the cards, the generosity of reaching in your pocket to help me get to Houston, the gold hearted friend who sent me her wig, when I put it on, it's identical to my hairdo prior to shaving it off, it's so convincing, my husband thought he was seeing things, I walked thru the house with it on, noticed he noticed, then took it off. He was convinced what he saw was my hair.. I went back and put it on, he was blown away, it is perfect color and cut, just like it was made just for me. Instead it belonged to a very special dear friend that I have met here. I will not mention anyone's names, out of respect of their privacy. Each of you, know who you are, you are many. I believe God has a plan for each of us, and that everything happens for a reason. God led me to this blog, from the moment I was diagnosed and handed it over to God, he has led me every step of the way I will continue to follow.
I do not have the experience that many of you have, yet I have taken so much from your lives. I may not have much to offer in return, except for HOPE. I am always available to help anyone in anyway possible. If nothing else, my life I always try to see the good instead of the bad, if sharing some of my wild and crazy aspects of my life brings a smile to your face or makes you laugh, then I have given all of myself to bring positivity and unconditional love to each of you as you have done for me.
Sorry for such a long post, I just wanted to share so others will find HOPE to ease the tensions of kicking AC in the butt.
Thank you all from the bottom of my heart for welcoming me into the BFAC family. Each of you remain in my thoughts and prayers.
I hope that my spirituality does not offend anyone, we all have our own beliefs and I respect that.
God bless you all – let's keep the good news coming.
Let's put on our thinking caps and work as a team, to stop AC in its tracks. SAVING URANUS! Is a great way to have our voices heard.