"Don't" is a strong word. I feel the need to clarify that, although the post from last night was very real (and for that, I cannot apologize) but maybe I could have used a better choice of words. For instance "Try not to..." I have to inform all of you that I am not offended if you say any of those things. It takes quite a bit to offend me. ;) I may not even notice if you say, or have said, some of those lines. Like I stated, you may very well hear those words come out of my mouth. I don't expect anyone to know the "perfect" the words to say; I am living this situation and I haven't a clue as to what I would like to hear. I would be worried if someone was so accustomed to this type of event that he/she knew the exact phrase to provide comfort. Who in the world would want to be so familiar with this type of traumatic experience that the condolence simply rolled off the tongue? I, for one, hope to never encounter another human being who must deal with this hideous beast.
Please don't take any of this personally... it is really just a way of formulating my thoughts and putting them in a cohesive manner that I can understand. I am still doing well, but have certain moments of deep, sad feelings of grief. What Not To Say To Someone Grieving:Please...Don't tell me you understand how I feel, or that you can imagine the pain I am going through, unless you have lost the love of your life. Trust me, you can't. If I can't understand, and I am going through it, trust me, you can't – your mind will just not let you voluntarily imagine pain in this aptitude. Don't try to compare my loss to the loss of a grandparent, or a friend, or an acquaintance or pet, it's not the same. I understand that all of these things are painful, but it is not remotely close. Don't ask how I'm doing unless you really want to know. Just because I look good, doesn't mean I feel that way. I am assuming that since you have asked, you truly want to know. Don't try to save me from my feelings or make me feel better. I know you can't bear to see me in so much pain, but I need to go through all of these feelings whether I want to or not. Once you have "given me permission" to talk or cry, please don't try and distract me with small talk. I know it makes you feel better if I appear happy, but that is just not always the reality. Don't tell me everything will be okay. Don't tell me "he's always with you". Don't tell me "he's no longer in pain". Don't tell me "he's looking down on you from heaven". Don't tell me "you're lucky that you had such love, some people don't". Don't tell me "he's in a better place". Don't be surprised however, if I say these things… Don't ever tell me "you need to be strong"... I am trying.If ever there's a time I should be permitted to be weak, this is it. Whatever you do, don't tell me "If I were you I'd…." Until you are in the same situation, you have absolutely no idea what you would do. Your logical brain has absolutely no control. Never try telling me "life goes on", or "he wouldn't want you to cry", or "God will never give you more than you can handle" or any other platitudes.Again, don't be surprised if I say some of these things. It's a coping mechanism.Don't try to solve my "problem". Unless you can bring him back, it can't be "solved". Don't tell me I when I should or should not start dating. Only I will know when that time comes, and it probably will not look the way you (or I) think it should. Don't feel the need to fill in silences. I know the silences are hard, but if you can accept them, you are helping me immensely.Don't tell me that my life needs to go on. I am fully living my life, however, I am grieving not only my spouse, but the person I was when I was with him. MOST OF ALL...Thank you for being my friend. Thank you for your patience. Thank you for caring. Thank you for helping, for understanding. Thank you for praying for me.
You don't get to choose your family. Luckily, I drew the long straw in that contest. You DO get to choose your friends. I am so very thankful that I chose wisely. I am humbled by their constant love and support. What would I do without good friends, good food, and good wine? Tonight was no exception. It is so rewarding to get out tonight and thoroughly enjoy the company of great friends.
Everything I had researched and read about death mentioned the feelings of peace and calm that a terminal patient finally achieves. The last two weeks of Bill's life were anything but peaceful. I repeatedly stated that what Bill (and our family) endured was not even close to the realm of one dying in peace. I honestly felt that everything comforting I had heard about death was a lie... I was bitter that after such a difficult fight, even his death would be painful and stressful.On Monday, June 15th, around 4:30 in the afternoon I finally allowed myself to leave Bill's side and head downstairs for a break. I had been next to him the better part of the day. It had been all of about 15 minutes, and I had just finished making Tyler a sandwich. Adam heard his mom's warning from upstairs and looked at me and said, "He's going." We both ran at full speed up the stairs. My heart sank... I knew the moment for which we had all reluctantly prayed was actually happening. One can NEVER prepare. I sat next his shell and put his hand in mine and watched his chest attempt to keep taking breaths. (They were very few and far between.) After having his eyes closed and his mouth open for a solid three days, he opened his eyes and closed his mouth. He also took both of his hands out of ours and slowly set them on top of each other on his stomach in preparation for his final slumber... and then he took his last breath at exactly 5:00. We sat around him praying and crying for about 15 minutes. After he passed, his eyes closed again and his mouth reopened when his jaw muscles loosened. I actually tried to close it and the nurse warned me that his jaw wouldn't stay shut, but I had to try it for myself. We took our attention off of Bill and recapped what had happened and talked about logistics with the nurse. I looked back to Bill's thin face and couldn't believe what I saw... he had closed his mouth almost completely and was wearing a grin that only Bill could give. HE WAS SMILING! I never would have believed it if I didn't see it for myself. An actual SMILE. Finally, he was at peace... we were at peace... The fight was over and it WAS peaceful. Before Bill passed, I told him I wanted some sort of sign afterward that he was all right and made his journey safely. I also clarified that "a sign" was not the same as "haunting". I clearly told him that I did not wish to be haunted or scared in any way. No peaking in windows or showing up in pictures as a ghost, etc. He said he understood and would do his best to honor my wishes. I got my sign... he smiled to let me know all was well, and he made it safely. Hence the reason I took pictures. As odd as it sounds, Bill's death was a beautiful life experience. I get it now... the peacefulness, the calmness, the serenity... I get it.
No, not Michael Jackson, although I was surprised by his death, I am referring to Farrah Fawcett. She lost her battle with cancer this morning. I don't think her death was unexpected, but it still made me sad. After watching her cancer special about the trials of her treatment from Bill's hospital room, I gained a new level of respect for her. Not many beautiful celebrities would allow themselves to be so vulnerable and raw on national TV. I am disappointed that the news coverage is only really focusing on Michael. She would have been able to further spread cancer awareness, even after her death, if Michael would have held on a little longer. I feel like she was robbed of the spotlight she deserved. It just hit a little too close to home today.
How are YOU doing?
Honestly? Remarkably well. I am a little surprised at the amount of relief I feel. I am relieved that Bill is no longer suffering... relieved to live each day that is not surrounded by cancer... relieved to give Tyler some normalcy back into his little life (mine too). I know I did everything in my power as Bill's caregiver. I loved him, cared for him, cried with him, and held him through the entire battle. I have no regrets. I would not change anything if I had to do it all over again.
Mourning is an interesting thing. It sneaks up on you, and then disappears when you think it should be present in full force. There is no rhyme or reason regarding grief. Bill and I spent the last 10 months grieving. We grieved together every step of the way. He would tell me when he could feel changes and would let me know that he thought his time was limited. Although it was excruciatingly painful, I am so thankful that we could talk openly and honestly about our thoughts and wishes. I truly think those heartfelt conversations have created an inner peace inside me that words just can't describe.
**Disclaimer: I may feel differently tomorrow, and I am reserving the right to change my mind.**
I got to work for 4 hours today... I use the word "got" (not had) because that is how I feel. I am part of an amazing district committee that teaches teachers "life-changing" technology. (OK, a little dramatic, but it's true. There is SO much more to it, but that is the idea in a nutshell.) I am privileged to be a member of this elite team. It was really nice to spend 4 hours thinking about something else, and I realized that my brain did not actually turn to mush during this ordeal. The past 10 months, going to work has been my saving grace. The past few weeks were so intense that I longed for some time in my element. Getting back on the proverbial horse was exactly what I needed.
I want to write about Bill's last moments on this Earth, so I feel like I should give some sort of warning before I jump into recounting his last breaths. It will be in the next day or two, so you may want to skip that post if you are bothered by the topic. I actually want to write about it while it is still fresh (raw) in my mind, so Tyler can someday have a detailed explanation of his Dad's passing. Rest assured, I will not post the pictures. (Yes, there are pictures.)
So many generous people have inquired about a memorial fund or donation they can make in Bill's honor. While I have not set up a memorial fund, I do have a recommendation if you are so inclined. In fact, Bill and I talked frequently about what charity to which I would donate after his death. (He wanted to have a say in all of the "afters"... but that is an entirely different post.)A little background... We originally were ecstatic to donate to the City of Hope, but after our lackluster experience, our enthusiasm dwindled. I found the Melanoma Research Foundation (MRF) and their website answered millions of my questions. They also have a bulletin board/chat area for patients and caregivers that has literally saved my sanity (the little I have left). I would check the board nightly and have made friends with others fighting this beast both directly and indirectly. This is why I will choose MRF as my donation recipient. I truly feel that I can put a "face to a name" with this amazing organization. You can make a donation by mail to:
The Melanoma Research Foundation 170 Township Line Road, Building BHillsborough, NJ 08844Phone: 1-800-MRF-1290 Fax: 908-281-0937
Please make check payable to the Melanoma Research Foundation (MRF).
Your donation is tax-deductible.EIN# 76-0514428
If you prefer, you can make a donation through their secure online site.http://www.melanoma.org/memorialdonation.aspxAnother option that we talked about as a family is the support of Hospice... particularly Vitas Hospice. They were incredible and supported ALL of us through such a difficult time. Even though it has only been week (I can't believe it has been a whole week), I am already planning ways that I can "pay it forward" and give something back to those in need. We are so greatly supported that I am excited and motivated to be able to do something for others in desperate need, like we were.
I will admit that I was dreading today. It just made me sad that Bill had so few Father's Days and then passed away right before one to which he was entitled. Fatherhood is a rite of passage for most Dads. The title is earned and goes to those who lovingly bring children into this world. Bill was one of those. He fought long and hard for Tyler, not me. I am not trying to be the martyr, I know he loved me more than anything and did not want to leave me, but he died knowing that I would be OK, and I would always cherish our memories. He also knew he took a piece of my heart with him. I can't say the same for his thoughts about Tyler. He was uneasy with the unknown of his little son's life. He was uncertain his three-year-old would actually remember him. He wanted to be there as his Dad on this Earth, not watching from above. He hung on for Tyler... It was the one thing I could not "guarantee", to a certain degree, the way things would happen. He wanted me to promise these three things regarding our son: 1. I will always love him and take care of him (duh, that's easy) 2. I won't change his last name (also a no-brainer) 3. I won't buy him a Porsche when he turns 16 (I agreed, but that doesn't mean I can't buy myself one! He actually gave me carte blanche on my future vehicles.)Happy Father's Day to all the dads (and single moms) out there!
Bill's service was yesterday, and I am proud to say that I made it through. (I seriously had my doubts.) For those who weren't there, it can only be summed up in one word... beautiful. The service, the church, the hall... all simply beautiful! We guesstimated approximately 300 people were there, which is indicative of not only our support system, but the type of person Bill was. I was so, SO nervous before it started, and now I wish I could live in that moment forever. I truly felt his presence, and I know he was impressed with the turnout! ;) After the reception, the Bartak/Nicassio/Britton clan went back to Joe and Ann's and relaxed. The kids played together and the three boys now have a family bond that I will always cherish for Tyler. We reminisced, drank a few adult beverages, and enjoyed the day. It was truly a happy ending; just like Bill would have wanted. A few of us went to sushi later in the evening, without children, and toasted Bill numerous times throughout dinner. Tyler and I left late last night, and I actually drove home with a smile in my heart. I really didn't think that would be possible yesterday or anytime soon, for that matter. I am truly convinced that you feel how you act... you shouldn't act how you feel. If I act happy, then I will feel happy (and it won't have to be "an act".) I really do feel extremely lucky and so very blessed to have incredible family and friends. Bill is up there smiling!!
Joe and I went to the mortuary today and finalized the details for the cremation. It was surprisingly easy, although I am pretty numb and in a daze, so open heart surgery would also be easy at this point. I am seriously spacey since Bill passed away. I can't focus... that is, I can't focus on what I am trying to do. I can focus perfectly on staring into space or watching a fly zoom around. I have never been one to just sit and watch TV. I always multi-task, even if it's watching TV and reading or being on the computer, I never just sit and stare at it. Our recent events have turned me into someone with severe attention issues. I am hoping this too, gets better with time. Things are falling into place nicely for the service on Friday, and I can only hope that my numbness lasts for its entirety. I am having it videotaped... that might seem weird to some, but when the memory of a three year old is concerned, I feel it is necessary. (Yes, Tyler will be there.) With my mind in a constant haze, the video will be nice for me too.
As the disease progressed, I knew we were in for difficult times. I knew it would be the hardest time of our life, and I knew I would answer questions from a three-year-old that I would never be able to predict. I knew a lot... and even though I knew one cannot prepare for this type of tragedy; I need to admit that I didn't know it would be devastating to the nth degree. Granted it has barely been 24 hours, but the thought that he is gone never, ever leaves my mind. Tyler asked me today, "Does Daddy live in a different house now?" I said, "Yes, he lives a huge beautiful house with Jesus up above the clouds in the sky." He said, "But his car is still here, how did he get there?"I replied, "You don't need a car in heaven. It's a magical place."He quietly took in the answer and is contemplating the next question, I'm sure. He's just like his dad... We love (and need) the prayers. Thank you to our amazing support system who has continued to pray for us and love us. Tyler and I need it more now, than ever. We will be OK, and we will get through this together. He is one special little boy, and I don't think it's a coincidence that he looks exactly like Bill. Bill's Memorial Service and Reception
Friday, June 19th at 11:00am
Saint John Vianney Church
1345 Turnbull Canyon Rd.
Hacienda Heights, CA 91745
All are welcome!
So many different emotions and feelings, I don't really know where to start. My main concern right now is Tyler, and no one else, really. I told him that Daddy had to go walk with Jesus in heaven and we wouldn't see him anymore. I also told him that I would always take care of him, and that it's OK to be sad sometimes, but we can still talk to him while he's in heaven. He jumped off the swing we were sitting on and asked me to play jump rope. Then later...I took Tyler up to bed, and he walked into my room and saw that the bed with Daddy in it was gone. He cried... not an obnoxious "I want attention" cry, but a slow, sad cry that showed me he understood. He tried to crawl under my bed to hide, so I sat next to him on the floor and we cried together. My poor baby... it was heart wrenching. I know he desperately needs a mommy who is able to give him all her attention (since the last few weeks have been so crazy), and he needs me to guide us to a new normal. That is my new quest... finding Tyler some stability in his life so that we can try to rebuild our household with just the two of us... I learned tonight, that the sooner the better. I thought this blog served as my therapy through this ordeal, but now it will be more so than ever.** Services will be held on Friday, more details will follow. **
Another Melanoma WARRIOR got his wings this evening at 5:00.WILLIAM JOSEPH BARTAKDecember 27, 1966 - June 15, 2009May you rest quietly and peacefully in your new home. You will always be our hero.I will always love you, my dear husband.
Bill has always been a person with an extremely strong work ethic. In twelve years at Claim Jumper he never took an impromptu sick day. Even after being diagnosed, he never once called in sick. He is a true work horse!That would explain the reason he is still not giving up on this never-ending fight. We have told him over and over that his battle must end, and he is ready to walk with Jesus... We are ready for his departure from this world. He is heading to a better place (and we are insisting he saves us seats). He is still in a coma and non-responsive. His eyes are fully dilated which means he has turned off his brain to this world. His breathing is very shallow and he has what is referred to the "death rattle". It is still a waiting game... I will keep updating if and when things change. Thank you for all your prayers and well-wishes. We read and love every single one! We have faith that Bill will complete this journey knowing how much he is loved and cherished.
"The will of God will never take you where the Grace of God will not protect you."I pray that this statement is true... I pray for strength...I pray for peace...I pray for comfort...I pray for solace...I pray for us...We are still by Bill's side, waiting for him to be lifted up to heaven.
We had a rough night with Bill still trying to bolt out of bed. He is hallucinating constantly so there is not any solid communication with him at this point. My favorite was when he jumped up and said he spilled his glass of wine (no, he's not really drinking wine, or anything for that matter) and then when I ran to him he told me he wanted to dance. He was his ornery self mixed with some crazy drugs. We had another four hour period today that we thought was the end, so we sat around him and poured our hearts out. At one point he had 18 seconds between breaths. Then he *somewhat* opened his eyes and went back into the hallucinating. He is mumbling and grunting, but not at all coherent. I have heard of peaks and valleys, but this is really a crazy ride! Definitely an E ticket roller coaster! (OK, I don't remember E tickets, but know what they are.) I am tired... bone tired. We have a nurse here by his bed until midnight tonight. They are working on getting one from midnight until 8:00. Then we should have another one starting at 8:00 tomorrow morning. I am counting some solid sleep helping me to get through tomorrow!!
We had a quiet day today without any mishaps, falls, or vomit! We did have quite a few hallucinations, though. It also seems as though the medication is making him a little paranoid. We started writing things down so we could possibly see clues into what he's thinking. He is talking a lot about weapons and protection... which is odd from someone who isn't into that kind of thing. I actually think he might be preparing me to somehow be protected after he is gone. He also reminded me that we have a coupon for a free pizza, and wanted to make sure it was eventually used. Sometimes you have to laugh...He says the voices talk to him and he talks back and reaches out for them. Today, I heard him say things to the ceiling like, "...but I really shouldn't be driving." "They are here already? I thought I had more time." "I need to leave soon, and I can't stay in the house." We pretty much respond with the answer we think he wants to hear. Sometimes it works... other times, it doesn't. Medication every hour is brutal. I don't understand how "they" can expect a caregiver to give a dose each hour - nighttime is really hard. Granted, I have loads and loads of help all day and all night, so we set a schedule and all is well. I can't imagine being alone at night and administering meds around the clock without sleeping. Sleep is so hard to come by as it is. Adam (Bill's cousin) flew in from Holland today, after being in Europe a month. He had a hard time getting a flight and being so far away just made matters worse. I wish I could have prepared him for what he was walking into, but we all have gone through our different "realization" phases, and unfortunately tonight was Adam's turn. Let's be realistic, there really is no preparation...
The days are definitely not getting easier. Bill fell this morning trying to get out of bed, which he obviously should not be doing. He has something called "terminal agitation" that gives him outbursts, twitches, and the desire to run. It was an emotional day after the fall, and I am so thankful he was not hurt. He is never left alone, and hasn't been for some time, but if you turn your back for a second he is unconsciously headed for the door. We had a few visitors from hospice today, one being the nurse aide who graciously comes and cleans the patient and makes sure all supplies are stocked. Right at the end of his cleaning, Bill vomited... a lot. He hasn't eaten anything since Monday, and he had a lot of (TMI warning) dark green/black junk that came up. We got the nausea under control and he seems to be settled for now. Even with the drama, we had a very nice, quiet day. I spent some necessary one-on-one time with him and truly feel at peace. I have told him everything I need and have reassured him that Tyler and I will be OK (someday). That is not to say that I am not devastated and heart-broken, but I need him to be peaceful, and he is far from it at this point. He so greatly deserves to be relieved from this horrible pain. Having cancer is bad enough... I will NEVER understand the suffering he has endured. It just seems so inhumane for one person to absorb all of this agony - mentally and physically. I still can't believe this is actually happening...
We have actually had a very quiet day. Bill drifted in and out of consciousness and we were able to (again) tell him how much he is loved. I might venture to say it was a slightly better day than yesterday, but I don't want to give false hope to anyone, especially myself. I have been really good today (emotionally), but now I sit here on our bed knowing that I will never share it with Bill again. With him lying in front of me in his hospital bed, I feel as though my whole world is flashing in front of my eyes, only there is no flashing, things are in slow motion. Is it possible to run out of tears? I am not to that point, but I would think that the time is coming when I won't physically be able to produce anymore tears. Will that be a welcome day or a dreaded one? Will it be a reprieve or yet another stress? I know the pain will not go away, but will it ever lessen? I can actually feel my heavy heart breaking. Please, God, help diminish ALL of our pain.
Roller Coaster are two words that come to mind this morning. We had a very rough day yesterday and spent it surrounding Bill telling him it was OK to go to heaven. He was unconscious and his breathing was not only labored, but he would stop breathing for 10-12 seconds in between. We also had the priest come in to give him the sacrament of the sick. After about an hour and a half of staring at his chest, he opened his eyes and said, "I have to pee really bad." With some major help from Joe (against my will) he went to the bathroom and had a few minutes of clear thoughts and speech. If I didn't see it for myself, I never would have believed it. As we all sat next to him and prayed for the Lord to take him, he decided he had to pee. Typical of Bill and his sense of humor...Unfortunately the clarity didn't last long, and he slipped back into unconsciousness (with the labored sporadic breathing), and we set a schedule to give him medication during the night, since he needs it every hour. All night he gasped for air and struggled to take breaths. This morning we awoke to a lucid Bill again. It lasted about 20 minutes or so, then he slipped back into a slumber. He is not eating and only takes a sip or two a couple times a day. We know the end (or beginning, depending on how you look at it) is imminent. It is now only a matter of time. We learned yesterday that this is all God's plan and Bill will go when he is ready and on his own terms. Sometimes people wait for family members to arrive before passing, and other times they wait for privacy to protect loved ones of seeing the last breath. Whatever his plan is, we know he will be at peace flying with the angels.
Another day... I am a little overtired, which generally is not good for anyone involved. Although I have been able to go bed relatively early, keeping watch of Bill during the night is similar to having a newborn baby, minus the elation and joy. He grunts, talks, and twitches in his sleep which tends to wake me, and I struggle to get back to sleep. The challenging part is that he tries to get up and walk around (or maybe he's trying to leave - we aren't really sure). Catching him sounds like an easy enough task... how fast can he be?? Honestly, he's amazingly quick. He sets his mind to it, and next thing I know, he's racing down the hall. We are focusing on the safety issue right now and making sure that we stay one step ahead of him... literally. Hospice continues to be supportive. They came out again today after I called to inquire about getting his prescription changed that will help him to rest more comfortably and take away some of the twitching that constantly wakes him. Another nurse is scheduled to come out tomorrow to make sure we have everything we need. I can't say it enough, hospice is our savior!
Many people automatically have a negative connotation with regard to hospice. In my experience so far, it is the reprieve we so desperately need. The nurse came today (stayed for almost 4 hours) and arranged everything we might need for Bill's care. Medications are being delivered tonight and a nurse will come tomorrow to rearrange some of them. Since he is on oral medications, we will switch some over to liquid drops. He had some major bouts of nauseousness today and vomited twice... once having just taken his pain meds. Our goal now is to keep him comfortable and out of pain. Although he's pretty loopy, I know his pain level is not an issue. Hospice will provide so many amazing services that I feel like a weight has been lifted and he is getting the treatment he needs. I must be honest to say that things are progressing quickly and my goal is to follow all of Bill's wishes and plans written in his directive. As hard as it is to actually make decisions on his behalf, I know what he wants (and doesn't want) and am trying to separate my wants from his. We are doing well, with intermittent tears mixed with some funny moments. (You have to laugh sometimes...) Fortunately, we have an immense amount of help, support, and prayers. One day at a time...
It's been a day... very circus-like! The hospital bed has arrived and it seems like it will be a huge help. We have it in our master bedroom since Bill told me awhile ago that downstairs would be too noisy and not private enough for him to rest comfortably. He is still very out of it, and stayed that way the majority of the day. There is a lot of mumbling and many statements are said that don't make sense. He really isn't up much anymore, except to go to the bathroom. His pain has been kept under control, though, and he has been eating more than once a day. In complete honesty, things have changed pretty drastically this week. His "off" moments are more prevalent than not. Although I am unsure of a definite plan, we are meeting with a hospice nurse tomorrow for an evaluation to see our options. I am unsure if we will venture to the City of Hope on Monday, since it is for results that can be told in a phone conversation. Since he isn't thinking clearly, I don't know if he will still qualify to stay on the trial... tumor size isn't the only reason to halt treatment. We are taking things one day at a time. To add to our insane drama... Bill's parents and my aunt were here, and I went upstairs to check on the patient. I was lying awkwardly on the bed and decided to turn back and kiss Bill on the forehead. I evidently turned wrong and dislocated my shoulder. It was intense pain and I yelled out (and made Bill jump). Joe came in and in the midst of me sweating bullets and starting to black out, he got me to the bed to lie back down. I kept trying to move my arm to pop it back in... NO LUCK. The irony is that my aunt was on the phone with Bill's doctor (although we were going to call 911) and he was able to direct Joe to move my arm a certain way. We BOTH finally heard it pop back into the joint. I will probably go get it checked out since this is the second time it has popped out. In fact, the last time was a year ago, almost to the day. I have never experienced this kind of pain, except of course, the last time it happened.I am emotionally, physically, and mentally exhausted. I hope to get some much needed rest tonight. Ann is staying here tonight, in case I need an extra set of hands. It has been a rough one!
Only 4 more days of school and it totals about 22 hours. Although that sounds rather appealing, it is also a reality check of the millions of tasks that need to be completed during that time. It always gets done on time, so I have faith this year will not be any different.Bill has had a few rough days. Yesterday he went for his scans, and then headed straight to have his lung drained. They drained the same side since it had more fluid when they did the ultrasound. They drained 2 liters a week ago, and 2 more liters yesterday. Next Tuesday he is scheduled to have the left one drained. We go back to the City of Hope Monday for the scan results... another nail biting weekend. I can tell a difference (for the better) in his breathing, and the squeaky toy sound is gone. He has also been eating more since my aunt has been helping us. (We have all been eating better.) Taking his medication on time each day has curbed his pain and he seems to be comfortable. The only downfall is that he has been a little out of it at times during the day. He gets confused easily and says some really random statements. Then at other times, he is right on and totally coherent. The events yesterday really wore him out, so he will need to spend a few days recovering from the excitement of scans and drains. We were scheduled to get the hospital bed today, but there was a slight mix up and it should be here soon. That should also help his comfort level.
I have a twitch... an annoying teeny, tiny muscle spasm in my lower eyelid that is (fortunately) not noticed by the naked eye. I know most people are now picturing an awesome, severe tick, and I hate to disappoint you, but it's minuscule. It's so small that I have to really stare at my eye up close in the mirror to see it happen. I can feel it though, and it is driving me crazy. I can remember the three weeks before our wedding I had the same thing. Sometimes I get it a day or two before school starts, but this one has been around over a month. Obviously it is stress induced, so I suppose I can plan on it staying for awhile longer. At least it is the end of the school year (6 more days!) so maybe I have a slight chance of relief in a week or two. Things are running smoothly around here amidst our normal chaos. Bill goes for his scans tomorrow morning and then he heads to have his other lung drained. They anticipate getting the same amount (2 liters) from the left side as well. We will head to the City of Hope some time next week, probably either Monday or Thursday since those are the only days his doctor does clinic visits.
I have postponed this entry because I know she will be mortified to read this about herself. I just can't leave it unsaid for another day. I promise not mention Aunt Sue's name in full. ;) My aunt came to the hospital on Friday to visit Bill, and told us that she took a leave of absence from her full-time job to give us a much needed hand. She is going to handle the care giving during the week and is taking control of Bill's medications, ensuring he takes them on time and in the correct dosages. She also is tackling his eating issue... or lack of eating issue. Today she organized his medications, called for refills, made his scan appointment, called his doctor, and got the ball rolling on getting a hospital bed. Things I honestly couldn't have done in a week's time, let alone an hour. She is allowing me to be just the wife and mother, and not nurse, which is one hat I gladly relinquish. I even got to go to Target BY MYSELF to pick up Bill's prescriptions while she stayed home with Tyler. To say it was a nice treat is an understatement. Please note: My uncle is also under the weather recovering from surgery, so she is doing double duty as lead care taker for both of them. Mix into that the fact that both are men, and you can clearly see the unselfishness in her offer. We are so very grateful for this generous offer! I cannot express our sincere appreciation for the additional help... especially since the last two weeks of school are so crazy. I feel as though a heavy weight has been lifted off of my shoulders. Her love and warmth are just what the doctor ordered. Cancer continues to show us our many blessings... I can't say that I am totally thankful for it, but we must look on the bright side once and awhile.
