June 5 2013
Today we went in for a biopsy of left neck lymph nodes. Doctor confirmed initial hospital lab report of squamous cell cancer with an unknown primary. Biopsy still had to be sent to the official pathology lab to be confirmed.
****the most surreal moment happened while sitting in the waiting room with multiple other families waiting for their loved ones to be done with surgery. When our doctor walks in to give us the news that the surgery is compete, never did I think he already knew the answer. My father in law took one look at the doctors face as he walked into the waiting room and said “come on doc, smile”. The doctor didn’t smile. He looked down at the two of us and said “it is cancer”. The world stops. Everything around you slows down. The room spins slowly. It’s almost as if some force takes over your body. You try to focus and listen to what the doctor has to say but you can’t get over the fact he just changed your entire world by saying that one word…cancer. I asked if he told my husband, he said he did but he won’t remember and that if/when he asks me, to tell him the truth. In my head I scream in disbelief. “What! Wait! I have to tell him!” That’s his job, not mine. The doctor leaves, my father in law is shaken to the core, wondering out loud if he can get an anxiety pill. He leaves to take a walk. I sit in complete shock almost numb. I wonder why I am not crying. Inside I’m freaking out, I know I am but I sit and stare out at the room and wonder how many other people in the room just heard the doctor tell me my husband has cancer?
As I wait for my father in law to come back or the nurse to let me know I can see my husband the next surreal thing happens that stays in my mind every day. The man sitting in the next seat over has his doctor walk in and the doctor immediately says “Great news, surgery went very well. Your wife is in recovery and she can go home later today”. I remember thinking how did they get so lucky? Why did they get the good news? That’s when the moment hit. That’s when I start to shake, then silently cry and wonder how we will get through this. Will my husband survive? I immediately grab my iPad and google what the doctor said Jim has. I don’t even know how to spell it. Once I finally find the multiple sites and read about it, I freak out again. Cancer is frightening, the odds seem daunting. The Internet is full of the worst.
The nurse finally comes to take us to see my husband. I’m so scared to see him. He is sitting up in a hospital chair with the silly gown on and a very goofy grin eating crackers and drinking juice. He seems so happy and relieved the surgery is done. This was his first time having major surgery. He is talking and laughing and my heart is breaking. He suddenly asks if the doctor talked to us and I do not lie to him. I tell him the doctor believes its cancer. Everything in that moment changes for him. His face changes in a split second. He is so sad and in disbelief. He wanted to believe it was just an infection or virus in his lymph nodes. We take him home to begin this journey.
June 13 2013
Follow up appointment with the surgeon who performed the biopsy. Biopsy confirms squamous cell. We are told we are being referred to an Oncologist who will take over. We cry all the time now together. We leave the office more scared than ever.
June 18 2013
We meet with our new Seattle Cancer Care Alliance doctor. She is calm with a no nonsense demeanor. We nick name her our Harry Potter Wizard. She confirms from biopsy reports also that its cancer to the head and neck with an unknown primary site. She tells us that we need to see an ENT to have a scope put down Jim’s nose/throat to see if a primary can be found.
June 27 2013
We meet the ENT doctor. She is straight forward, but somehow comforting. Jim feels reassured by her. He asks me later if it’s ok if she can be his girl crush doctor! No problem if she helps save his life. She uses the camera scope down his nose after spraying some numbing spray. Jim is horrified but takes the procedure easily. She does not find any tumor or suspicious findings. She tells us this is actually really good news. It means that more than likely the primary is very small. She explains that possibly it could be hpv related as well since they are seeing such a rise in head and neck cancers that are hpv related and many times they don’t know why. It is actively becoming one of the fastest growing forms of cancer. She says she is suspicious it may be in his tonsils and our next step is a PET scan. We will meet up again after the PET scan and even if it does not show anything to possibly take the tonsils out to biopsy. We leave with some hope. I remind my husband how she repeatedly said this is good news.
Monday July 1 2013
PET scan appointment. My husband is terrified. He is scared that he is going to light up everywhere. We pray it is not so. Because of his anxiety of the machine, Jim took an anxiety pill on our way to the appointment. He goes in to drink the special milkshake and then be injected with a radioactive chemical as well as a second anxiety pill. He has to sit still and try not to talk for almost an hour. The tech told us talking could set off false positives in the neck area. He completes his pet scan as well as a CT scan of his lung area. We are told the results will be sent to our oncologist and ENT. We have a follow up appointment set for one week exactly.
****** We go home that day almost with a sense of freedom for a week. Jim makes homemade pizzas on the grill and we are having a nice family evening. At this point our boys do not know their dad has cancer. We have chosen not to share this incredible burden with them until we have answers. The phone rings at 7:30 pm. I know in my heart it’s the oncologist with results from today’s PET scan. I run to the phone before the boys can see the caller id announcing Seattle Cancer Care. As I look at the caller id, it confirms that indeed it is the oncologist. My heart pounds as she asks to speak to Jim. I pull him into our bedroom and shut the door. We then go into our bathroom, and shut that door too. My knees are week, my hands are shaking and I feel as though I will pass out at any moment. I know my husband is trying to be strong but in his head I know he is freaking out because why would she call him at home just hours from having the scan when we have a follow up appointment? I watch him listening to his doctor and the panic is so overwhelming. Did they find cancer throughout his body? Oh dear god, please help us! I hear Jim ask “is this good news or is this bad news?” “Its good news” he says back to her as he looks at me. My knees buckle and I sink to the ground thanking god. He gets off the phone and tells me that his left tonsil lit up in the PET scan. They also found a small nodule on his lung that his doctor does not seem concerned about but will keep an eye on. After researching 1 in 100 people having a CT scan will find a nodule on their lungs. Since the doctor is not worried about it, I told Jim let’s not borrow trouble and concentrate on what we do know. Which at this point is they believe the primary is in his tonsil. Now he needs to go have a compete tonsillectomy for biopsy. As well as the tonsil lighting up, the oncologist also confirms that Jim’s cancer is indeed hpv positive. We are told if its head and neck cancer that we get the lottery with it being hpv positive.
Monday July 8 2013
Tonsillectomy surgery. We go to a surgery clinic instead of the main hospital. Our ENT will perform the tonsillectomy as well do a small biopsy of the tongue and the back of his nose. Surgery is very quick and within one hour I am back in the recovery with him. He looks great eating a Popsicle and drinking apple juice. He does wince a lot because of the throat pain. He’s taking Percocet and I take him home.
*****here’s the crazy part. No one told us having an adult tonsillectomy is extremely painful and a long recovery of a couple of weeks. No one told Jim to take time off from work until 10 minutes before his surgery. This is where Superman Jim came in. He was amazing during this recovery. From day one he drank and drank and drank water and Gatorade to stay hydrated. He had protein drinks, ate soft eggs and toast. He ate chicken and turkey to get as much protein in him to help recovery. I cut up Popsicles for him to suck on like ice chips. Every day for the first week I drove him to work for as long as he could tolerate. He stayed on Tylenol 24 hours a day except for a few nights when he had to have Percocet because of the pain. I set my alarm for 10 days straight for every 4 to 6 hours depending on what medicine he was taking so that he would never get behind the pain. Day 1 and 2 were fairly easy and tolerable. Day 3 and 4 were tolerable. Day 5 and 6 awful as far as pain and swallowing. Day 7 and thereafter got easier each day. Jim was very lucky that he did not have a bleed or any nausea. I believe from drinking water no matter how painful around the clock healed him quickly. Many sites state the foul odor from the mouth and the scabs falling off are awful. Jim never had or felt any of that. It was NOT easy. Every day we congratulated him for getting through another day. He DID work from day 2 on. He DID go watch our boys play baseball. He was tired. He was hurting, but he got through it. He was amazing!
Monday July 15 2013
2 doctor’s appointment. First one was for a consolation with the oncologist to discuss the tonsil biopsy. The tonsils did not show any cancer. They still believe that’s where the primary is based, secondary is on the 3 lymph nodes with cancer. They will still treat it just the same. Again we were told that she didn’t feel Jim was “that bad”. She went through explaining Jim needs a port installed and a peg tube for when he can’t eat and drink enough. Scheduled this appt. This doctor will be in charge of infusion or as Jim says, his chemical cocktail.
Next doctor is also with oncology but he is the head of radiation. He explained to Jim how lucky he is to have the hpv positive attached. He believes Jim will live a long healthy life. He told Jim if he does nothing he will be dead in 2 years. We are told he needs to do an Induction Chemo first. This will consist of starting on a Monday and having an all-day drip in the hospital then going home with a fanny pack that contains chemo which will continuously drip for 4 days. He will go back in on Wednesday to replace the cassette of chemo and then go back in on Friday to have it disconnected. Followed by a booster shot Saturday morning. He then waits two weeks to see if the lymph nodes react by shrinking. The goal is to shrink them so the radiation works better. The whole process takes 21 days. He can possibly repeat this process two more times afterwards. Once the induction chemo is done the real process starts of 7 more rounds of once a week of chemo and 35 rounds of radiation 5 times a week. We are told it will be a very difficult treatment but this cancer can be cured.
That statement is what is going to get us through this. Our new doctor is so nice and made us feel it’s going to be ok. We have had amazing doctors each step of way so far. Because we now have some answers and hopefully a very positive prognosis we went home and finally told our two boys that their dad has cancer. It’s a very hard conversation to have. They were both in shock and silent tears fell down their faces. They are amazing kids that I know will get through this. I think since their dad has never looked sick or even felt sick because of this cancer it almost doesn’t seem real yet.
Tuesday July 23 2013
Port and PEG installed. Today is the day Jim has been dreading. It has been nonstop weeping since the tonsils have come out. It has been hard to carry the burden of being strong 24/7. I have found comfort in a Sunday morning church show that talked about going through difficult times and the pastor said “wipe away those tears and get back in the game”. God wants to see that you care. I have repeated this saying many times to Jim. The fear of having the port and the peg tube literally makes him queasy to think about. He knows without a doubt he will need them but the thought of having the peg tube sticking outside of his body freaks him out. He does not want to see it or deal with it. So needless to say the last week has been many hours of tears. As we drove to the hospital to have the surgery we reversed our roles, Jim became amazingly strong and said he has to do whatever it takes. I became weepy and sad because reality hit hard. This was our first big step into his cancer cure. Once these are installed in his body the journey of chemo and radiation begins and there’s no going back.
We checked Jim in and once again just got amazing health care. Jim received a Valium because they knew his anxiety was very high. During our 1 1/2 wait before surgery, Jim had his vitals taken and IV placed in his hand. We also had the dietician who will be working with us through this process come to show us how to take care of the peg once we go home. Even though Jim will not need it until probably around week 4 of radiation, we still have to flush it out with water two times a day even though he is not using it. Having her show up and talk about this actually calmed Jim down about the thought of it and he was able to accept it.
Surgery took about 2 hours. He was pretty drugged up and it took a while to come out of it. He felt awful as the effects wore off and kept saying he felt like someone shot him in the shoulder and kicked him in the stomach. I made myself look at his surgery sites as the nurses did since I am the one that will have to clean the peg site for awhile and I wasn’t sure how Jim was going to react once it was really in and he wasn’t medicated anymore! The hospital released him about 3 hours after surgery. A bag was connected to the peg to allow the stomach fluids to empty through the night. We had to go home with it attached and empty it several times throughout the night. It was a little nerve racking to see Jim drink something and watch it come right back out through his stomach. We were given instructions before surgery how to take care of the peg by flushing it twice a day with a water rinse. But once you get home on your own, everything you were told goes out the window. Besides the obvious pain and discomfort from the incisions, it is something else altogether trying to face reality that your body no longer looks like you anymore. Jim really had a hard time even looking at the peg tube in his stomach area. He asked if we could cover all the mirrors. Of course not! The first time flushing the peg we worked together. I clamped the tube; he held it while I got the syringe ready. I put the syringe in the opening and nothing happened. Water spilled all over and panic set in. What are we doing? What’s wrong with this thing? The cap on the syringe was still on! It’s funny to laugh about it now but when your husband has anxiety about the peg and he’s 12 hours out of surgery and you are so nervous about doing everything right, it’s not funny then. It’s frightening and you feel like nothing is ever going to be okay again.
But we figured it out and did it. Next was the cleaning of the incision around the peg. It’s not fun or pleasant but after a few days of q-tips, peroxide and water, it started to heal nicely. We kept it covered each day with gauze because it made Jim feel better not to see it and taped the peg tube up on his stomach. He feels better not having it hang down. The first day to shower with it was hard for him. He didn’t want to see it, feel it or touch it. He looked briefly in the mirror and saw the bruised port area and the peg tube and burst into tears. He cried the entire time in the shower but got through it. He felt like he had to hold the peg tube and not let it hang. It was emotional for him because he didn’t feel like himself anymore. When he was done we got him dressed and taped and covered everything up and truthfully we just congratulated each other for working together and figuring out how to get it done. It does get easier every day.
On a side note…because of the pain from the incisions, Jim overcompensated other muscles during that time trying to get in and out of bed or the car and his lower back, hip and groin felt sore or pulled.
Monday July 29, 2013
Induction Chemo Day. The night before was tough. We were both scared and showed it in being very short and cranky with one and another. You would think we would be comforting each other that everything is going to be okay. But when the fear of the unknown takes over, the emotions are so incredibly overwhelming. Jim would say this was going to be the poison entering his body and I would say this is the cure entering his body. He would cry and I would tell him we need his mind and body strong. He would show weakness and I would get mad. The night before we slept in separate rooms because we could not get along. It was because we were both so scared. On the morning of, we fought about our different approaches to this situation. I don’t blame him for being crazy scared. I try to put myself in his shoes and wonder if the roles were reversed would I stay as strong? Probably not. In the end, I believe we have a great support system with each other. When it comes to the actual crunch time, Jim pulls through every time. His weakness is when he has too much time to think about it. My weakness is when the moment has arrived.
****The day before Jim started his first meds. There were steroids that he needed to take twice a day for 3 days. We don’t really know what they are for at this time but he takes them as directed by his doctor. We were given 4 different prescriptions and its overwhelming to know when and why to take everything. We had the steroids, anti-nausea pills, anxiety pills and some numbing cream to put over the port.
In the morning of the chemo induction, Jim takes his steroid pills. We then know we need to apply this cream over his port to help with numbing the area for access. Here’s the thing though….if there are still steri-strips covering it, you must remove those. Otherwise the cream will not be effective. Lesson learned!!
As we check in to his first infusion therapy, I look around at the other patients waiting and realize we are now one of them. We now have cancer. One by one they get called away to their appointment and I start to cry, but Jim totally has it together. He is ready to start this fight. We get called in to start labs, the nurse asks questions, they take his temp and blood pressure and then they need to access the port. The great news is Jim has minimal bruising around his chest area which the nurse says his body heals quickly. However, he does still have some swelling around the port being only 6 days out of surgery. The bad news is now we find out the numbing cream will not have worked with the steri-strips over the port area. But we don’t really know what that means until the nurse tries to access the port. She tells Jim to take a deep breath and on three she will push the needle in. Oh my gosh! The pain on his face is nothing I have ever seen from my husband of 19 years. The tears start and he is fighting for control. I immediately start to cry silently as well. The pain I see from him is so heartbreaking. I can only wonder what we have got ourselves in to. The nurse tells Jim the needle is too short and she is going to have to pull it out and put another one in. The panic I feel for him is great. I don’t even know how to comfort him. She pulls the needle out and tells him to take another deep breath and on the count of three she pushes the new needle through. This time Jim is even in more pain. He is clenching the chair handles; he is fighting for self-control, his face shows nothing but pure torture. It is the worst feeling ever to see your spouse in so much pain. At this point the nurse asks me calmly if I can leave the room for a few minutes. I assume because I’m crying. I walk away with tears streaming down my face and I am so scared for my husband. This is just the first day of treatment. How are we going to get through 63 days or more? A lovely nurse finds me and offers words of comfort and leaves me to look out the hospital window praying to god to help Jim through this. Little did I know, the second needle did not work either for Jim. He was told he would have to go through it again. He grabbed multiple tissues and wadded them up in his mouth and bit down as hard as he could so that he would not scream. The nurse that spoke to me was actually the one that went back in to Jim and got his port accessed on the third try. Apparently his port was a little crooked and because of the swelling the first nurse didn’t know. He had some slight stinging in that area for a little while afterwards.
Jim bounced back fairly quickly from that ordeal. He stayed in a really great frame of mind. They took his labs and we met with the “pharmacist” that explained what chemo drugs were going to be given to him. What the side effects were possibly and to stay as hydrated as possible. He told Jim this combo was going to push him to the brink. It was not going to be fun or easy but he would get to the finish line. Jim has vocally told each and every one of his doctors that he is not going to need the feeding tube. That he is not going to miss work. That he is not going to let cancer take him down. I think they all secretly would like him to be that poster boy but silently give Jim a knowingly smile that he is going to need all of the tools in front of him to get him through this. The pharmacist told Jim by Thursday/Friday he is going to feel knocked down hard. Jim told him when he comes back in on Friday to have his pump of chemo disconnected he will be in smiling. They now have a bet to see who wins. He also told Jim probably in about 10 to 14 days he will lose his hair. I asked if it was for sure because some people don’t. He said it was for sure. It makes me sad but it’s just a small price to pay to get the cure. He told Jim he might feel better being in control of shaving his head ahead of time rather than dealing with clumps coming out.
Okay on to the induction. Jim starts with hydrating fluids and then several different nausea fluids, then the Benadryl fluid, then the chemo fluids followed by another round of hydrating fluids. They then hooked up the portable pump of chemo and we left with it in a fanny pack. The whole process of fluids began at 11:00 am and we finished at 6:30 pm. It was hard when the chemo fluids went in because it was signed sealed and delivered at that point. We can only continue on now. Jim was fine throughout the entire process. He laughed and joked with the nurses and doctor. He had a latte, cookie, half of a turkey sandwich, apple slices, a Bolthouse protein drink and an apple juice. He had a couple cups of ice chips too. He didn’t feel anything strange and took a small nap. We left after a long day and went home. I made him some fresh vegetable juice and gave him a vitamin d and we went for a mile and a half walk. We came back; he drank another 30 gram protein drink with some small slices of meat and took his 2 steroid pills. We flushed his peg. One of the side effects of the chemo is dry nails that can crack and fall off. I had to paint his fingernails and toenails with a clear polish (3 times a week, removing once a week) and put tea tree oil on them daily as well as a very thick, hydrating lotion. I also made up ready to go salt and baking soda cups with lids so that Jim can grab one and rinse his mouth out 4 to 6 times a day to hopefully help prevent mouth sores. We finally went to sleep with the fanny pack of chemo next to Jim’s side.
****because of all of the different medicines including his high blood pressure medicine and the daily vitamin d pill he takes I found a great daily/weekly pill box to keep track of all the medicines he is taking right now.
Tuesday July 30, 2013
Fanny Pack of Chemo was not fun for Jim to disguise with business clothes. We finally found him something to wear with a jacket that he could feel comfortable going to work in. He does not want people to see it. He was definitely emotional about it. But why wouldn’t he be? He has 5 feet of tube connecting from the chemo fanny pack to his chest port. He has the peg tube that must be covered up as well trying to protrude through his clothing. He says he feels like a big bowling ball with tubes. I remind him that he only has the pack for three more days. I am driving him to work as we have no idea when the knock down is supposed to happen and I don’t want him to have to face it alone when/if it comes. We have the anti-nausea medicine packed as well. I have put all kinds of things in his office for him. Hand sanitizer, Clorox wipes, Kleenex, bags for possible sickness. Sunscreen. Just five minutes in the morning sun today, turned his face red. The pharmacist did tell us to be careful that the sun would burn quickly and wear sunscreen daily. We forgot already!
Over all Jim had a good day. He worked for 7 hours. He took a small nap when he got home from work. His stomach was a little constipated but finally released to make him feel better. He was in bed by 10:00.
Wednesday July 31, 2013
Half way through our first week! Jim is definitely feeling tired but went to work. It’s been hard not being able to shower. We wash his hair in the sink and he uses baby wipes to clean the rest of his body. He just continues to push the water and high protein into his body to help heal. We went in around 10:30 and had his chemo cassette replaced. The fatigue has set in and he worked from 8:30 to 2:30 today. Took an hour nap late afternoon. Walked a mile and went to bed by 9:30.
****side note on high blood pressure medicine and with all the fluids this week Jim was completely swollen everywhere. His ankle bones could not be found. Called the doctor and she changed his high blood pressure medicine. He also needs to take a water pill until the swelling is down.
Thursday August 1, 2013
Woke up feeling great for the first hour and half. Got ready for work, then hit a wall. Jim took his first nausea pill and went to lie back down. I went back to check on him within 15 minutes or so and he was back up, crying, but finished getting himself ready for work. He said no way was he going to let cancer beat him. He is amazing! He worked from 8:30 to 3:30. Took a nap. Walked a mile.
***tough night emotionally. Our son, Nic said it feels like I am never home. He feels like he and his brother, Jake are living alone. This is only week one. They don’t understand that in order for Jim to work, I need to drive him and stay with him until he says he’s had enough. Jim has to work to keep his insurance. He does not want to take vacation or medical leave until he has to. His fear is he will lose his job. It brought a lot of tears and guilt tonight
Friday August 2, 2013
Chemo pump is being disconnected today! Yay! We made it through. Emotionally it’s a weepy day for both of us. Jim is scared the treatment won’t work. His facial hair slowed growing. We both know it’s just a matter of days before his hair starts to fall out and we have to shave it. That will bring on another emotional day in itself. He is sad he has all the tubes everywhere. He just wants to feel normal and hug his kids. I remind him we need to look at our blessings instead and be thankful for those. Such as today, the chemo pump is disconnected. Swelling has gone down on his feet, ankles and stomach. He is up another day to work. There are blessings in between the crazy. We went to the hospital to have the pumped disconnected. Jim feared the needle coming out of the port would hurt but it was just a little pinch and the relief of that as well as the pump being disconnected left us both in happy tears as we left the office. Jim was famished and so happy to eat. It was a joyous day.
***** one visible side effect from this induction was quite a bit of acne on his back and butt. Jim has never had acne before.
Saturday August 3, 2013
Booster shot day. Arrive at the infusion therapy. He can have his booster shot in the arm or stomach. Jim chooses the arm. Nothing too painful. All day long Jim has had severe burps and rotten egg smelling gas. He feels awful. We take his blood pressure and it is lower than its ever been. The lowest it went that day was 83/61. He was tired and cried all day. Called the on call doctor that night and they said he was fine as long as the top number did not drop below 80. Told us not to take any blood pressure medicine in the morning if it was below 90.
Sunday August 4, 2013
Blood pressure still low but stable. Still tired, gassy and weepy.
Today Jim starts 10 days of antibiotics. Pharmacist says it’s a powerful dose. Complete all. Description says it can treat anthrax…that’s lovely to know. I keep reminding Jim that the doctors said he should start feeling better tomorrow, just get through today.
Monday August 5, 2013
Jim feels awful. Cannot get rid of the burping and awful gas. Called the doctor, she said he can take Gas X. His right hip, groin and lower back is hurting him. (I think he may have pulled something after his PEG and port surgery due to over compensating his stomach muscles). Today he is still crying and I am truthfully just mad. He was supposed to be feeling better, why isn’t he! Blood pressure still low too. Worked about 4 hours.
Tuesday August 6, 2013
Follow up infusion and oncology appointment. Jim is in excruciating pain in his hip, groin and lower back. We go in and they give him pain meds and fluids. Doctor feels a CT scan is needed to rule out appendicitis. Jim is in tears. He can’t possibly have another surgery. It’s so much to take in. The positive side is I correctly put the numbing cream on his port before we left and taped a Gatorade lid over the area and when they accessed his port this time it did not hurt! Yay! The pain meds worked and calmed him down. We spent all day in the hospital waiting for the scan with the yummy milkshake concoction and the results. Good news, No inflamed appendix or colon. We were sent home with the unknown but slightly relieved nothing serious. Jim took Percocet the rest of the evening and by morning felt much better. Not a fun day.
Wednesday August 7, 2013
Woke up sad about the peg tube. Absolutely hates having it. He dreads having to take his clothes off and see it in the shower and mirrors. Cannot accept that it’s all for the good “when” he will need it. Our son took him to work today to give me a break and get some chores done around the house. Picked up fluoride trays from the dentist today for him to help protect his teeth once he starts radiation. Still a little pain in the hip area but nothing like yesterday. Worked about 4 hours. Gas X is finally working a little better; he is taking one in the morning and one in the evening. Definitely an improvement.
Thursday August 8, 2013
Woke up feeling so much better. Worked 8 hours. Ate and drank fluids all day. Only breakdown was at the end of the workday. The peg nutritionist called to say insurance was approved with Walgreens to set up home delivery for food for the peg when needed. This caused a major breakdown again. He does not want to deal with any aspect of this. I told him to change his frame of mind and look at it in the positive sense that when he finally needs to use it we will be in the last half of his treatment. We will be one step closer to being done with treatment and on to being cured. Right now it doesn’t change anything. He tried to explain that it makes him feel less of a man. He feels demoralized with this tube.
Friday August 9, 2013
Got up and really trying to be much more positive with the peg. He looks like his old self. It’s nice to see. Worked 8 hours.
Saturday August 10, 2013
Just worked about an hour. Took donuts in to all his employees. A little tired and grouchy.
****still continuing to paint his toenails and fingernails with clear polish every 3 days (Removing every third application) as well as putting tea tree oil and a heavy moisturizer on his hands and feet. So far no cracking or dry nails.
Sunday August 11, 2013
Noticed hair is really thinning. Kind of depressed about it and wearing a beanie hat all day. Blood pressure is starting to creep back up. Took a couple of naps throughout the day.
Monday August 12, 2013
Exactly two weeks since the start of induction chemo. Hair stated falling out in the shower. Jim got out of the shower and I had to wipe several clumps off of his forehead, face and neck. As well as quite a bit was stuck around his peg. This was a defining moment. You know it’s going to happen, but a small part of you hopes it doesn’t. Jim wishes he did not have a job and could just hide for the next couple of months. Lots of tears from both of us as he gets ready for work and wears a beanie hat to work for the first time. Blood pressure has reached 155/96 and I call the doctor to see if he should start taking his medicine again. She says yes.
He worked all day and did great. When he got in the car that evening, I asked him if he wanted to have someone come over and shave his head or go to a salon to get it done. He immediately exploded and yelled “that’s the first thing you ask me when I get in the car”. I explained to him that I thought about the morning shower and hair loss all day and I didn’t want him to see what I saw. It would freak him out. He agreed to go in but was not comfortable with the idea at all. He didn’t know what to say to the stylist. I said just tell her your hair is falling out and you need to shave your head. Keep it simple. That’s what he did. He didn’t look in the mirror at all and kept his eyes looking down to the ground through the whole process and when he got up to go to the wash basin he did the same. I was able to get a glimpse of him as he walked by and at first it startled me but then I knew he was ok. When we left he told me he didn’t look at himself at all and just put his hat back on with his eyes closed. It broke my heart.
We got home and our youngest son had an amazing letter written out for him which made us both cry with pride in him. As we were getting ready for bed I asked Jim to take his hat off, that I needed to see him and deal with it. It was still a shock but I told him he looked great. His head wasn’t completely bald. It still had stubble all over. I told him how much I loved him and how proud of him I was and asked him if he wanted to see for himself. He didn’t. He went to bed with the beanie on.
Tuesday August 13, 2013
Jim woke up procrastinating tremendously about getting ready for work. Said his stomach didn’t feel well and he needed to rest. I knew in my heart he just did not want to face the mirror. The night before I had taped our sons’ letter to Jim on the bathroom mirror. I walked in there and re- read the letter. It was truly inspiring. I called Jim in and told him he needed to read this again. As tears flowed down his face he looked in the mirror and pulled that beanie from his head. It took a moment, but then he started laughing and said he looked good! The burden of knowing you are going through all of this and losing your hair is overwhelming. That burden was lifted from Jim’s shoulders and he felt so free and relieved! He knows I’m keeping this journal to hopefully share with others and he told me to put this moment in. That it really is ok and he feels empowered now! The fear overtook him, but he took the power back and the joy he feels is amazing. He wanted to run downstairs and share with our son what his letter did for him and show him his shaved head. I had to stop him and remind him, his son is sound asleep and if he went charging in with a bald head it might just freak him out!
Both our sons handled seeing their dads’ bald head amazingly. Both said it was a little strange at first but said they liked it and wanted to find new beanies for him. A Superman Beanie was found soon after! Our great friends shared in the head shaving and finding new hats as well! (We have some pretty awesome friends!)
Wednesday August 14, 2013 through Sunday August 18, 2013
Jim felt almost like normal. He walked a mile and half each day. Took naps when he needed them, continued to take care of his nails and toenails, did his salt and baking soda mouth rinses a couple times daily and by Sunday was dreading Monday.
Monday, August 19 ,2013
2nd Round of Chemo Induction. We went in with hopes that this was the last round of induction. We were informed at the hospital that it’s standard to have three rounds. Later that day I found a piece of paper in my purse that his doctor had hand written 2-3 rounds of induction. We need to clarify why she wrote that but then told us that 3 is protocol.
We went in at 8:00 am and left at 5:00 pm with the fanny pack of chemo attached. Jim’s port was numb again this time when accessed. We did the whole taping the Gatorade lid over the port with lots of numbing cream. His feet, ankles, stomach and neck area are swollen with fluids. He only slept a few hours this night.
Tuesday, August 20, 2013
Woke up around 3:30 am took his steroids, high blood pressure pill, drank a 30 gram protein drink, ate a yogurt with 14 grams of protein, a 15 gram protein bar and a full 16 ounce of water all by 9:00 am. He is trying to make sure and get at least 90 grams of protein in daily to heal from chemo. Today he feels slightly nauseas which he didn’t have any of that with the first round of induction. So far he has a little bit of hiccups and a little belching, but not the chemo gas yet.
Worked a full day. Kept saying his stomach did not feel good all day. Came home and took a late nap after eating a wonderful dinner that our good friends brought over. Woke up around 9:00 pm, ate some toast with a protein shake. We did all the normal taking care of the hands and feet, mouth rinse and flushing the peg. Went to bed by 10:30.
Wednesday August 21, 2013
Woke up at 5:00 am still complaining his stomach didn’t feel well. Felt nauseas. Ate some scrambled eggs, toast and green tea with honey. Took his steroids, high blood pressure pill and a nausea pill before going to work. Home blood pressure is high. We don’t know why. If it’s from the chemo, the steroids or maybe the nausea pills? Very cranky and really not nice to have any sort of conversation with today. At work, constantly complaining about his stomach and now he says he is feeling pain in his hip and groin again. Just like the last induction. It has to be from the chemo or steroids. I went to the store to get him some Pepcid AC and crackers with a banana. He seems to be doing better after that.
We went to hospital to have the chemo pump replaced with a new 48 hour cassette. Blood pressure high. 176/110. They want Jim to ride it out for the week. They gave him a dose of nausea medicine through his port which immediately made him sleepy. She said it should last for 12 hours and he may sleep 6 to 10 hours and to wake him up to drink water. We leave the hospital with me pushing him in a wheelchair to the parking garage because he is so drugged now, he can’t walk safely. As we leave to go home any conversation sets him off. I just let him sleep. He slept from 3:00 pm until 6:30 am. I woke him several times to get him to drink water and to make him eat some protein as well as waking him again to flush his peg tube and rub tea tree oil and lotion on his toes and fingernails.
Thursday August 22, 2013
Woke him up at 6:30 to eat some eggs, toast and warm water with lemon. Today is emotionally a tough day for him. I remind him he had already beaten the day just by getting up and getting ready for work. Tears stream down his face as he gets ready. We flush his peg tube and I tell him all he has to do is get through today, tomorrow the fanny pack of chemo is coming off. I help him get dressed as it’s not easy with the chemo pack and tubes. Unfortunately I set him off again as he is putting cologne on (since he cannot shower this week and just uses baby wipes to clean) by saying to him once radiation starts he won’t be able to use cologne. He yells at me, telling me I am so negative. Asking why I need to tell him this. I tell him because I research everything for this process and these are facts he needs to know if he isn’t going to ask his doctors or do his own research. A huge argument ensures and he yells at me reminding me he is the one with cancer. It’s hard to argue with that. I know that. I’m doing everything I know to take care of him the best way possible and I know this week is so incredibly hard on him with all the drugs running through his body. For me it’s hard to feel I am doing my best for him but he can’t comprehend it. It’s a sad day. He sleeps the whole way to work. At work he is in a fog and tired. Left work at 2:00 today. Did not nap at all that afternoon/evening and had a very healthy appetite.
Friday August 23, 2013
Yay the chemo pump is coming off today. Jim was emotional. He made it through a 2nd induction! Did not have the same side effects as the first time. No acne, only a little bit of chemo gas this time, a small amount of belching and hiccups. The main difference this time was the fatigue. Very tired, low energy, some nausea and some skin discoloration in his leg areas. Even though the happiness of the pump being off is there, it’s not the same as the first time. This time knowing that there is another trip down this road already looms ahead.
****from a spouse’s point of view: my hair has become very dry and straw like feeling. Tonight I take a shower and clumps of hair are pulled from my head as I shampoo it. The drain is clogged with my hair! My knees are shaking and I am freaking out. What is going on??? Looking back, the most important thing you can do as a caregiver to your spouse and family is take care of you too. In less than three months, I think the shock and stress caught up to me.
Saturday August 24, 2013
Jim took a Claritin today before going in for his 9:00 am booster shot hoping to help the side effects of this booster. Most of the day is good. Healthy appetite and not overly tired By night fall the bloating feeling kicked in and he became miserable.
Sunday August 25, 3013
Morning flushing of the peg tube showed he had some gross stuff under the bumper next to his skin. Finally figured out the last “button” was stuck under there and not falling off naturally. Cleaned quite a bit of gunk from under there along with the button and it looked good. Started the strong antibiotic today and I don’t know if because he took it right after dinner that his stomach was so bloated with gas. He was in pain all night. I did look at the label and it said not to take with food. I don’t know if we forgot that or if he took with food the first time around too.
Monday August 26, 2013
Today is hell. There is no other word for it. He is so grumpy and everything sets him off. My son and I took him to work and he snaps at everyone all day long. Someone has dropped off a thoughtful card to him and in it they discuss their own experience with cancer and Jim is beside himself. He doesn’t want to talk about his own let alone other people’s experiences. Many people who have gone through cancer share their experience quite frequently with Jim and he can’t handle it right now. It’s too raw. The fear overwhelms him of some of their experiences. Maybe once he has completed treatment he will be more open.
I only share this part for you to know, it’s ok. He was so incredibly short tempered. As I said earlier, everything set him off today. As we were taking him home. He exploded on us. My son sat in the car with me and we both cried the whole way home. Gut wrenching tears that had no affect on my husband. It was the hardest thing other than learning he had cancer that I have ever gone through. It felt as I was so alone. It broke my heart to have my son hurting. Honestly, there was nothing we could say or do to make anything better. When we got home I walked my son in and told him. “This is the chemo talking”. This is not your dad.
Jim sat in the car, in the garage for a while and finished a bottle of water. As the evening wore on, his mood became better.
Tuesday August 27, 2013
Follow up doctor’s appointment showed all of Jim’s labs were great. It was such awesome news! We were still told he had to go through with the 3rd induction, but sent home knowing his body is strong and heals. The lumps are not present to touch in his neck at all. I asked the doctor if in other cases at this point if lumps are still felt and she said yes. So this is good news for Jim. We left the hospital and went to breakfast and Jim ate a huge meal. His appetite was incredible. Everything tasted great to him.
The whole day went well. Every so often he reminds me that my approach to certain things such having him drink fluids, flush his tube or talk about cancer doesn’t work for him. That I need to let him do it his own way, not my way. By evening, after dinner, his peg tube is causing him some discomfort. He says it feels like someone is stabbing him. I look at it but it doesn’t appear to be infected. It does seem that the bumper ring is pretty snug against his skin and maybe the prongs of the bumper are causing this pain. I try to offer some suggestions but I am immediately shut down. He doesn’t want to talk about it or know anything from my Internet search. He ends up taking a Percocet and going to sleep.
Wednesday August 28, 2013
Jim woke up with the peg tube still hurting. Not as bad as the night before but still there. I take a look and there is some fluid or discharge under the bumper. It’s clear colored. I put a call into the doctors to wait. In the meantime his mean attitude is back again and I am reminded that he is the one with cancer. Its noon and he is mad that I want to flush his tube for the first time today and that I tell him that he hasn’t rinsed or brushed his teeth. It makes me so mad that he can’t deal with this. I shouldn’t have to be made to feel like a horrible person to want him to take the best care he can through this. I can’t understand why he wants to take the hard way on everything. He makes sure I know how awful I am. He cannot understand that all I want for him is to get through this the easiest way I know. It’s heartbreaking and feels so defeating.
Today honestly is the hardest day so far in this treatment. I feel like I don’t even know this man right now. I have cried so many times today asking god for help. He doesn’t want to do anything today to help himself. He is threatening to have the peg tube removed and stop all treatment. I ask him to do it for his boys and me and he says no. That is the hardest thing to hear. He promised me all I would have to do if things got tough was to say the boys names to him and he would do whatever it took. He has such a final resolve in him that I have no idea what to do. I asked him if he could eat a little protein just to help fight the chemo in his body and he just looks at me and says no. There is not an ounce of compassion from him about how emotionally upset I am. He doesn’t care. I honestly am lost and so alone in this. How do I help him? I’m his wife. I’m supposed to be the one to help him get through this. Who I do I turn to for help? Do I call his mom or dad? I don’t know what to do. How can I be a failure at this? Will this pass? I don’t know!!! Oh please help me god, please give Jim the strength he needs. Please god, please.
Thursday August 29, 2013
This is a repeat day of yesterday. The moodiness and non-emotion is overwhelming.
Friday August 30, 2013
It’s like the light switched flipped back today! Jim is back. Thank you God! I cannot tell you what happened, everything just clicked again for him and his fighting spirit came back
Saturday August 31 – September 8, 2013
There really isn’t anything to report except a normal, fairly happy week. A small rash appeared on the side of his left foot, but no other side effects or discomforts. It truly was a blessing to have such a great week compared to the week before
Monday September 9, 2013
Last induction of chemo week. Jim woke up surprisingly in a very positive frame of mind. As much as he does not want to go through this last induction, he vows that he will win this one, not the other way around. We were at infusion from 9:00 am until 6:00 pm. It was a long day but pleasant. No complications or worries.
Tuesday September 10, 2013
Jim slept well with the pump. Everything seems easier this time, maybe just knowing it’s the last round. He worked all day.
Wednesday September 11, 2013
Hump day! Chemo cassette is replaced. Count down is on for removal. Came home from working all day and took a 2 hour nap.
Thursday September 12, 2013
Went to work in good spirits. Counting the hours until disconnect. Worked a full day and he cooked a complete delicious meal for us!
Friday September 13, 2013
Went to work for a few hours and then got the pump off at 11:00 am. It’s a great day of joy! Very emotional leaving the hospital. Jim’s hair has been growing back in all week. Just stubble but it’s surprising to see with the combo of chemo he is on.
Saturday September 14, 2013
Booster shot day. We took our younger son with us to the hospital today. While Jim was in getting his booster shot we met a beautiful woman in the waiting room. She was so kind and she asked how my husband was doing and I told her amazing. I asked her how she was and she explained that she was on her 12th year of chemo and it was coming close to her time. She said she was at peace with it. When she was diagnosed she was given 6 months and here she is 12 years later. I have not shared this with my husband because I honestly didn’t think he is prepared at this time in his recovery to think of other possibilities other than being cured right now. However I shared with him a small life lesson she shared with our son and me. She told us she was raised with the belief from her father that every day you wake up with a choice. A choice to make it a good day or a bad day. She chooses to make it a good day. It really felt like an honor to meet her.
Jim said this shot hurt the most. Not sure why. He is very constipated today and not feeling very well with the steroid bloating. Today he has slept throughout most of the day.
Sunday September 15, 2013
He slept throughout the night. Stomach is still very constipated and making him feel horrible. He has tried stool softeners and other things such as pineapple juice. His bones ache horribly. He won’t take any medicine to ease the pain because he doesn’t want to add to the constipation.
I don’t know if it’s the effects of his discomfort but the meanness has come back. I pray it will not be as severe as the last induction. I am trying to give him lots of space and have told the boys to try to stay away from him as much as possible. It’s so hard to explain but it’s as he just doesn’t care. He doesn’t care if he’s mean, short tempered or the cause and effects. For instance it’s 3:00 pm. We have not flushed his PEG tube yet. I have tried twice to get it done and he just flat out says no. He is a smart man; he KNOWS it has to be done to prevent infection. He just does not care.
I have to remind myself he will snap out of this. I cannot let it affect us like it did last time. My hair is still thinning and falling out. After having tests done, I know it’s from the stress and shock of all of this. For my own piece of mind, I have to try to stay calm and not let the stress build. I know this is not about me; I am just sharing in case any other spouse has these same issues.
Surprisingly as I write this, he is now willing to flush his PEG. The mood has shifted again to a much more peaceful Jim.
Monday September 16, 2013
Today Jim has an all-day work meeting. I drove him to work and even though he was tired he lasted in his meeting all day keeping hydrated and eating protein. Very proud of him. He is still very achy but he is amazing.
Tuesday September 17, 2013
Labs and CT scan of neck and chest. It feels like a scary day. We cannot see or feel the lumps in his neck. We know the induction chemo is working but it still brings fear going into today. Jim cried most of the way to the hospital. We numbed his port area up very well and he did not feel any pain getting his labs taken. He was then sent to the image area for his CT scan. He was very happy he didn’t have to drink the milkshake and was just infused through the port. We then were sent back to the doctors to flush the port and disconnect. We were given the great news that his labs were perfect. He did not need to take any antibiotics! We were thrilled. Three inductions down with great labs! It was a wonderful feeling leaving the hospital.
Wednesday September 18, 2013
Jim felt great enough to drive himself to work. He worked a full day. Really had no issues at all.
Thursday September 19, 2013
Drove himself again to work for a full day. Around 8:00 pm we received a phone call from his doctor. We were told that everything looks great from the CT scan. The three lymph nodes have all been reduced in half and probably the most exciting news was the nodule that was on his lung from the last CT scan is nothing to worry about anymore! They believe it’s just a calcium build up! So exciting!!! Such a huge relief. It just makes us smile all night. Even knowing that radiation still has to be done, the relief from the CT scan eases the fear of the unknown. Tonight we feel so blessed and just say thank you god!
Friday September 20, 2013
Another great day. Jim drove himself again for a full day of work. He truly is superman.
Saturday September 21, 2013
He went to work. Came home very tired. Took a 3 hour nap. Enjoyed an evening out with friends.
Sunday September 22, 2013
Started Fluoride Teeth Trays today to prepare teeth for radiation. Dentist says to do every other day at least 6 months from last treatment. Everything else was great for the day.
Monday September 23, 2013
Met with the Doctor with Radiation Today to discuss the seven week plan:
So….we knew about the “mask” but we didn’t know what that meant. Jim went into the room with the laser machine. He was asked to take his shirt off and lay on a metal bed with his arms tucked next to his sides and his legs resting over a leg rest pillow. The technician then prepared the warm mesh, then placed it over Jim’s entire head, face and shoulders, molding to fit him. That was the easy part for Jim. Once it was ready for use, they snapped/bolted the mask to the bed starting at one shoulder, going around his head finishing at the other shoulder. It is a creepy feeling and sound as each bolt gets snapped into place. Jim took an anxiety pill an hour before his appointment per instruction from his doctor. Once they bolted him down, the claustrophobic feeling overtook him and he had to be released. He had a small freak out and they advised him to take another anxiety pill.
My heart ached for him. I watched him bolted down with that mask on and his chest was rising and falling like crazy. It’s a very helpless feeling. When he was released to sit up, he was so mad at the situation he was in. He honestly did not think he could go through with it again. The tech asked if he would like to have eye holes cut out for him to see better and hopefully help him not feel so claustrophobic under the mask. He said yes. They gave him a few minutes to take the second anxiety pill. He calmed down and played around with mask while standing up. The technician told him the next step will be the hardest but if he can get through it, he can make it through the treatment.
She attached him again to the bed with the mask and she and I left the room as he was moved under the laser machine to mark where treatment will be placed. I watched him through the glass as the tech did her business with the computers and once again his chest was rising and falling so drastically I almost couldn’t watch. I knew in my heart he was so scared. Once she was done, we had to wait for the doctor to arrive and approve all the settings. It seemed like he was on that metal bed forever. The tech told me she was purposely not going in the room to see how much Jim could take. She said she was testing his ability to lay there. When his doctor showed up I remember how he came running down the hall. I knew he understood how claustrophobic this can be for his patients. He advised me to give Jim the anxiety pills the first couple of treatments. He said after that he should do fine.
Finally the tech went in and unsnapped him from the bed. Jim took one huge breath. It was crazy to see that sense of panic being released. He immediately sat up and got dressed. We received his appointments for 35 radiation treatments. Monday through Friday for 7 weeks. We left there with a small sense of dread from that reality check!
As always, I have to pep talk Jim back through this. No matter what he has to endure, this is saving his life! He can and will get through this. Now we just wait another two weeks so that they can finalize their planning. Treatment will start October 7, 2013 and should end November 22, 2013. One week before Thanksgiving.
September 24 through October 6, 2013
Since Jim does not have any doctor’s appointments, there’s not too much to report. It’s been great to not have any side effects from not receiving chemo. Small stubs of hair on his head have started growing in. He dreams of growing his hair back in…..
His one constant complaint is that he hates his Peg tube with a passion! Lately he has been leaking stomach fluid/acid outside of the bumper. His sense of smell has intensified and the smell of his tube drives him crazy. I personally don’t smell it unless I put my nose right up to it, but he does. I told him that maybe it’s time to get it replaced and we will talk to the doctors when we go back for treatment. He says that if he has to have it replaced, he will tell them to just take it out for good! He doesn’t care; he says he will fight to get food down the correct way.
*******here’s my thought on his Peg tube. I have always been a supporter of it from day one. However, after going through it for the last 10 weeks and not even being anywhere close to needing it, I feel it was completely unnecessary to have going through Induction Chemo. I am still a supporter of it once the treatment of radiation has begun. But these last 10 weeks were already stressful enough without having to have an unnecessary foreign object that takes a lot of time and care hanging outside of your body. The emotional and physical stress of having this Peg Tube is a hardship at this point and I completely understand why he hates it.
***** here is also another side note as a spouse going through this, I’m trying to be as honest as possible. Since Jim has been diagnosed with hpv positive Squamous Cell Cancer of the head and neck , I have had this little voice in the back of my head wondering how this happened to him. There is so little info out there but as everyone knows after Michael Douglas spoke about his hpv positive throat cancer there is a stigma that this can be directly from a sexual contact. I have had such a fear that even though the doctors said that 80% of the population probably has been exposed with the hpv virus, I really have nothing to worry about. But if I don’t have to worry, why did Jim get it. We will never know. But I did go today for my annual Pap smear exam. I went in fear wondering if I could have hpv of the cervix. Could I have cancer too? Maybe it’s not being educated enough about this cancer or being in fear of the word cancer, I truly was scared my own doctor would say, yes you do have it too. Instead she looked directly at me and said you have nothing to worry about. The relief I felt in that moment was instant. A flood of tears poured from my eyes. Everything is scary when you are dealing with cancer in your family.
Monday October 7, 2013
Part Two is here. I prayed with Jim this morning for God to show him his strength to get through these seven weeks. This past weekend has been hard on him thinking of going through this. We have a great friend who sent Jim a quote from a song a while ago. It went something like “you can’t step on superman’s cape”. It’s kind of been Jim’s motto to get through this. As we were driving home yesterday, Jim turned on the radio to listen to the broadcast of his favorite sports team, the 49ers football game and the sports announcer out of the blue says “you can’t step on superman’s cape”. What are the odds? I believe you truly need to listen and look for signs from God. Be open to it.
We arrived for his 8:20 radiation appointment with Jim taking 2 anxiety pills to help him relax for this first one. I know he is so scared. I pray the pills helped him through. He also has a follow up chemo infusion immediately after. As we pulled into the hospital parking lot we also had to take a moment to put the numbing ointment on his port to be ready for access at 9:00.
He came back from having radiation looking like a “waffle face”. You can tell the mask is snug against his face. He looked at me with relief that he did it, but said quietly, it sucks.
My heart broke for him, but he has such a great attitude. While waiting for infusion he went into the restroom and took a picture of himself and sent it out to everyone dubbing himself waffle face. 🙂 Chemo is a lite version of his induction. He will just receive carboplatin. He is in a great mood receiving chemo and believes he can get through the next 34 treatments.
Tuesday October 8, 2013
Went to radiation with 2 anxiety pills again. Got through it easily enough, went to work for a full day.
Wednesday October 9, 2013
Jim drove himself today to his 8:10 am radiation appointment. Did not feel that he needed any anxiety medicine to get through radiation. Worked almost 12 hours today. I had to call him at 8:00 pm to leave work!
Thursday October 10, 2013
We both went to his 8:10 am radiation appointment today because we needed to discuss prescriptions and what to expect over the next few weeks per Jim’s Oncologist. Jim went in to his appointment and I waited with his doctors’ assistant. She asked how much detail Jim needs/wants to know. I told her he has to go through with it and needs to know exactly what to expect. She agreed but we both know he would rather not hear it. As we waited for him to complete radiation, he walked into the conference room stating he couldn’t do it today. I thought he was kidding. He wasn’t. The techs took too long to set up or align. He had a panic attack under the mask and had to be released. He told us he didn’t think he could do this anymore. He told us he didn’t want to do this anymore. He asked what would happen if he just stopped treatment altogether. Melissa advised him that he didn’t want to do that. Your first shot at treatment, is your best shot. For every treatment of radiation missed, you lose 1% of effectiveness. She was honest; we told him it could mean death.
Melissa went to get him an anxiety pill and Jim was livid. He wanted to quit and he wanted me to support his decision. I couldn’t. I asked him if he couldn’t do it for him, for him to do it for me and our boys. He said he couldn’t. He left the room. I later found out he was on his way out of the hospital when Melissa found him and got him back in to take the anxiety pill. We went over all prescriptions needed such as pills to help create saliva. A prescription for a mouth and throat gargle and swallow containing Aloe Vera. A drink called Juven that is supposed to help repair his cells. He received some lotions to help any redness or dryness on his throat and neck area. We met with the nutritionist, who once again said he will have to use the peg tube for at least supplemental feeding. Jim said he would rather swallow razor blades than use the peg……she marked that in his file.
The anxiety pill kicked in and they knew I wasn’t going to be able to be the one to get him back in the room. As Jim went to use the bathroom, we discussed they would be the bad cop and remind him why he needed to get back in for treatment. The tech’s found a boom box with some rock music for him since the quiet soothing elevator music in the room does not work for him. They also cut out a substantial amount of the mask around his eyes and nose area. Kind of like the size of a sleep mask. All of the above helped him receive his 4th radiation treatment. He went to work for about 6 hours this day.
Friday October 11, 2013
One week down of radiation! Jim was able to go in today without any anxiety pills. They played the rock music again for him. Unfortunately half way through treatment, the boom box quit! Just his luck! But he completed his treatment and felt good. He worked a full day of work.
******after one week of radiation and Monday chemo, he only says his taste buds are changing. Fatigue wasn’t an issue nor any nausea.
Saturday October 12, 2013 and Sunday October 13, 2013
Two days off from treatment. Just took it easy throughout the weekend. Started his saliva pills. No side effects. Started the Aloe Vera rinses. Didn’t care for the rinse, very hard to swallow it. Not because of difficulty of swallowing but rather from the texture and taste of it. He says it reminds him of slime. Tape marks from the Peg tube have also started to become an issue. Jim does not like the peg to hang and we use paper tape to hold it in place throughout the day and night. He has several red marks now, some seem very irritated. I put tea tree oil on them to heal.
Monday October 14, 2013
Start of the second week of seven week treatments. Jim felt since its chemo day as well as radiation and I have to drive him anyways, he decided to take his anxiety pills. He took his own music today as well. Radiation treatment went well. Chemo went well. He was also given a Flu shot. Worked for about an hour after treatment, then came home and went for a 1.5 mile walk.
**** his labs came back perfect today. His infusion nurse was so impressed. Everything was even better than last week. It was great news for us!
Tuesday October 15, 2013
Jim’s taking his own music each day and changing it up, as well as keeping it loud throughout his radiation treatment. He says it definitely helps him keep his mind off being locked down and it usually takes him from start to finish about 2 1/2 songs. He worked a full day.
Wednesday October 16, 2013
After his morning radiation treatment, he met with Dr Hunter and he stated all is going well and Jim is lining up in his treatments perfectly. Another full day of working.
Thursday October 17, 2013
Jim’s a little depressed over the whole being of having cancer. He is tired of the treatments and just wants to be normal again. Getting to the hospital an hour away from our home each morning by 8:10 am is wearing on him. Today he said he can feel his throat changing. Also after working a full day, he was tired. He went to bed by 8:00 pm and slept through the night.
Friday October 18, 2013
#10 of 35 radiation treatments done! 5 more weeks to go! It’s harder today just drinking liquids such as water. It’s easier to eat solids. Jim says drinking the Aloe Vera mouth rinse is actually easier now and feels good in his mouth and throat. It just feels like a mild sore throat right now. He grimaces slightly drinking and eating. He worked all day again.
Saturday October 19 and Sunday October 20, 2013
Took both days off of work. Very normal weekend. He relaxed, but didn’t need any naps. He continues to take his prescribed saliva pills. Drinks the Juven drink mix twice a day to promote healing. Uses the Aloe Vera mouth rinse 4 times a day. Brushes teeth twice a day and does salt and baking soda rinses after brushing. He also does the fluoride mouth trays every other day.
****mucous has slightly started to form in his throat but nothing that he is concerned about.
****Sunday night brings unhappiness for the new week’s treatment.
Monday October 21, 2013
Start of week 3. #11 of 35 radiation treatments #3 of 7 chemo treatments. Labs came back perfect again. Treatment went well for both. His mood doesn’t match. I think today he is feeling sorry and mad for himself. He is definitely grumpy, but doing everything he is supposed to do. He ate a slice of French toast and drank a Bolthouse protein drink before treatment and finished a Juven drink during his Saline drip. As much as this all sucks, he is still able to eat and drink at this point. His radiation and chemo doctors as well as his nurses seem surprised how little side effects he has. They did advise he begins taking over the counter Mucinex daily now to prevent the buildup. As they state…to obtain quality of life.
**** I told him I’m posting his attitude today and he wants it stated its one sided and he will be in to edit my posting 🙂
Tuesday October 22, 2013
Woke up feeling great and happy. Worked a full day after radiation.
Wednesday October 23, 2013
Another good day. Full day of working. A little tired after work, but nothing drastic.
Thursday October 24, 2013
A little tired today. Radiation has been fine. He’s been lining up great each time. Still hates being locked down, but checking each day off as he goes.
Friday October 25, 2013
15 radiation treatments down! Today his taste buds seem to be gone. Dinner was frustrating because he was very hungry, but nothing tasted. It made him sad and angry. He did come home and play his electric guitar for a while, which totally impressed our 17 year old with how much energy he had.
Saturday October 26, 2013
Jim woke up with a sort of lost voice this morning. Once he drank a little bit of liquids, his voice returned but not quite full strength. I’m quite frustrated with him today. He knows how important it is to drink and eat to keep his throat moist and active, but today he has attitude and is showing how defiant he can be. I actually cannot be around him. I don’t understand his logic. As I write this its 4:00 in the afternoon and he hasn’t even flushed his peg yet for the day.
Apparently his attitude today is because of me. I push and push him to drink and eat and take care of his mouth and throat on my schedule, not his. He stated at dinner time how I’m making his last few days on this earth miserable. That’s always nice to hear as the one person on this earth that is trying to do everything for him. Enough said for today.
Sunday October 27, 2013
Woke up with still a hoarse voice but no pain. Frustrated by eating since it has no flavor. Otherwise in a good mood. Doing the steps to take care of himself.
*****for some reason his facial hair and hair on his head is starting to grow back in but he is losing a lot of his eyebrows right now.
Monday October 28, 2013
Start of week 4 of 7. Jim went in to the hospital this morning for radiation and chemo sad. Amazingly both doctors are completely impressed with his treatment. His radiation doctor said by now most people dealing with head and neck cancer are medicated for pain. They looked at his throat and yes it is red (they call it a red sunburn) and tell him he must have a high threshold for pain. On a scale of 1-10 he says his pain is a 1. His doctor states that really only about 1 in 20 people deal with treatment as well as his treatment is going. He has not begun to take Mucinex or any pain reliever. He takes 2-3 saliva pills daily and they noted his saliva looks great.
His chemo doctor was equally impressed that he has no complications starting week 4. His labs came back great again. Everything is better or as equal to last Monday.
Once again though, Jim feels sad and scared. Even with such positive affirmation, the fear is always there. Today at chemo he ate some scrambled eggs, a slice of blueberry loaf and a coffee flavored protein drink. Surprisingly he said he could taste a little of the drink and blueberry loaf.
Came home from radiation and chemo, went for a mile and a half walk. I fixed him roasted veggies and a hamburger patty with cheese. Again he was pleasantly surprised because he could taste the meal slightly. He ate the entire meal. He also found that he tasted and enjoyed green tea with some honey and fresh lemon.
Tuesday October 29, 2013
Went to radiation feeling great. The techs got set up quickly and treatment went fast. Worked all day and took a night time walk outside. Found out spicy food hurts the tongue immediately. No more of that for a while! Besides that, a great day.
Wednesday October 30, 2013
Halfway done with radiation and chemo! Everyone is so excited for Jim, except Jim. He is tired today and looks at it as though he still has half more the distance to go. The boys and I sent him a huge bouquet of balloons to work today. Every balloon represented something about him. Instead of making him happy, it made him depressed. Not what we intended. Food was another source of contention today. Nothing tasted well and it’s hard for him to eat if he can’t taste. It’s still not an issue of soreness for him. Worked a really long day
Thursday October 31, 2013
Today was better emotionally. He knows it’s just what he has to do. After treatment he was happy to say only 16 more. He worked another really long day. About 10 hours. Still eating solids.
Friday November 1, 2013
Went to Radiation and work on his own but called during the day to say he hit a wall and could I pick him up around 2:00. Voice is hoarse but no other problems.
Saturday November 2, 2013
Went to work for a few hours. Had no problems with eating or drinking. Had a nice, easy going day.
Sunday November 3, 2013
Had a great day. Shopped for a few hours and by night fall, kind of fell back into the Sunday night blues about having to go into chemo and radiation tomorrow. Hair is definitely growing back on the head and face. Lower eyelashes and eyebrows are very thin or gone right now.
Monday November 4, 2013
Week 5! 15 radiation treatments and 3 chemo’s to go. Radiation was bitter sweet today. A gentleman we have made friends with during radiation today finished his last treatment today. So very happy for him, but brought us both to tears after he was gone. It’s amazing how genuinely close you get to others. Jim’s Radiation doctor met with us for Jim’s weekly follow up and was impressed again with Jim’s progress and lack of side effects. No sign of thrush or thick mucus. However, he told Jim that it should get progressively worse for him over these next 3 weeks of treatment, which just put Jim in an angry state of mind. We left the appointment knowing that he is doing exceptionally well, but unsure of what may change. It put Jim in a defiant mode and he is drinking a ton of water as well as eating protein during his chemo today.
Chemo brought on another great week of his labs showing all positive results. Each week his counts just keep getting better. Still no fevers! His Chemo doctor was equally impressed with how well all is
***** his neck is showing some redness now but nothing painful.
Tuesday November 5, 2013
A small blister has appeared inside lip area. He says it feels like a canker sore. Worked a full day.
Wednesday November 6, 2013
Everything is going well. A little tired. Came home a little earlier than usual from work to nap.
Thursday November 7, 2013
Stormy Seattle Day. Unfortunately the tech’s told him if the power goes out, not to worry they will just reset him. Which just set Jim off for a bad mood. The last thing he wants to hear is he may be bolted down even longer! Left the hospital after radiation with no power outages but with a depressed attitude.
Neck feels sore or sun burnt on the outside. Throat still does not really hurt. Sides of tongue and upper mouth are sensitive. Any sort of spice sets a pain like feeling off in his mouth. He has no problem eating or drinking still. No pain meds required yet. Worked a really long day of work.
Friday November 8, 2013
Jim got out of the shower and I immediately noticed two circles, one on each side of the neck. Radiation circle burns. It broke my heart to see. He has gone along with such minimal side effects and has two weeks of treatment left from today. I was just hoping that he wouldn’t ever develop something that may cause pain or delay of treatment. He talked to the doctor to see if he can use tee tree oil on his neck. Since it’s the weekend now, we will see if he can get healed up a bit before Monday.
****** One thing that I learned along the way of this crazy journey is, you will find a tremendous amount of support. You will be eternally grateful for it. You will also be surprised by who you don’t get support from. Jim made his Mom upset during his second Induction Chemo and she has chosen to not speak to him again. A few friends, once we told them, never called again to find out how Jim was doing. Everyone handles “cancer” differently, but it was an eye opener of who will be there during the tough times.
Just the word cancer, scares everyone. Until you, a close loved one, or friend has to go through it, you will never know how truly difficult it is to walk in those shoes. To know that we have had the support from these very special people has been the greatest thing throughout these long six months.
Saturday November 9, 2013
Tired but worked for a few hours. Noticed a small mouth sore inside his lip. Making sure to do the salt and baking soda rinses. Stopped with the tea tree oil, it burnt a little on contact. Went back to using the cream and ointment provided by radiation oncology.
Sunday November 10, 2013
Just took it easy all day. Mouth sore gone already.
Monday November 11, 2013
Week 6! Doctors at radiation have succumbed to believing Jim will get through this treatment without major side effects or pain. Neck has larger peeling sunburnt look to it, but it does not hurt. Throat does not hurt. Both sides of the tongue do feel awkward. Taste buds gone still with exception of natural unprocessed foods and coffee. Warm tea with honey and lemon are soothing to his mouth and throat. No chemo today due to the holiday. He worked a full day.
Tuesday November 12, 3013
Radiation and chemo today. Chemo doctor equally impressed with Jim as well as the pharmacist. Pharmacist told Jim he will have a special cocktail waiting for him next week for his LAST chemo infusion. Lab work came back with everything on the low side. Doctor does want him to come back on Friday and take labs again to see if a booster shot is needed. It was a little scary to see since he has always had great labs.
Also Jim was given some disappointing news. His main goal was to not use his peg tube and have it removed immediately. His doctor told him she would like him to leave it in until after his PET scan in case there is any residual cancer left after treatment is completed and surgery is needed. The look of disappointment and disbelief was immediate on Jim’s face. I know the wanting to get this PEG tube out of him as fast as possible is what drove him to get through this treatment. He was so mad. The PET scan will not take place until 5 weeks from his last treatment. His doctor requested December 24th, Christmas Eve. Another blow to Jim. He contemplated not doing his final week of treatment to move the PET scan date up. I know Dr. Kohn was surprised by his reaction. She talked him through it and told him this is what needs to be done. Needless to say the rest of the infusion day was not fun. Tempers from both us were short. A lot of sniping at each other. I went to his work and picked up a lot of paperwork for him to take care of and that helped to take his mind off of the negative while he finished his infusion.
By evening he was fine and enjoyed a dinner out with our oldest son.
Wednesday November 13, 2013
Went to radiation. Neck is still pealing. On his way out, talked to oncology and they were able to schedule his PET scan for December 23rd. It’s still hard thing to think about. We may have a really happy Christmas if we get his results back quickly and all is good or maybe not if they come back showing residue is still here. Or we don’t hear anything through the holiday and worry the whole time. I know we shouldn’t be focused on the holiday. The holiday doesn’t change anything. The results will still be the same. Yet it’s hard to fake emotion when you have children and family around. I pray we get good news.
Jim worked a full day.
Thursday November 14, 2013
Radiation went well. He worked another full day. He is completely frustrated about his taste buds being gone. It takes him awhile to eat a full meal. Not because of the throat, but the tongue. He explains that it feels irritated like when you have eaten too many sour candies and the tongue is inflamed or puffy. The texture of food feels crazy to him especially since he can’t taste it.
Friday November 15, 2013
Week 6 is completed! Such a great feeling to know Jim has one week of treatment, yet scary too. Did it work? I told my fears to the doctor’s assistant while Jim was in radiation and she looked at me and said he will be fine. It made me feel such a sense of relief. She said even if he did need surgery, it would be so minor and not to worry, but she did not believe it will come to that. I waited to tell Jim this news until we were in the car and the relief was instant with him as well. He wants to believe everything he has gone through was worth it.
He did his labs as well and they came back good….so no booster shot!
He worked almost a full day.
Saturday November 16 and Sunday November 17, 2013
Took the weekend off from work. We kept his neck hydrated with the aloe cream. It is looking very good now. I gave Jim a buzz cut on his head. His hair was growing back in, but very fine. He thought since he finally needed to shave his face again and it keeps growing like a weed now that if he did that to his head, the same will happen! It was a new experience for me to do and it made us laugh that we were taking it off when all he wants is for it to grow back in!
He drank lots of water this weekend and really tried to get the protein in him knowing he had his last chemo on Monday. He has been faithful since the start of these 7 weeks drinking two glasses a day of Juven. He is taking anywhere from 1 to 3 of his spit pills a day depending on how dry his mouth feels.
Monday November 18, 2013
Week 7! Final Chemo! It’s so hard to believe. We drove to the hospital in happiness and cannot help to reflect clear back on July 29th when we made the same trip so scared out of our minds and crying the whole way. Jim is extremely emotional today but in a happy way. He is so proud of himself for getting through to this point. He tells me how hard it has been. How painful it has been but hasn’t said anything. The relief of knowing today is the last day he will hopefully ever put chemo into his body is overwhelming. He completed radiation first and they congratulate him for how amazing he is doing. They said he has mucus in his throat which is completely how it’s supposed to be right now and credit him for everything he has done to take care of himself. Melissa can’t believe how great his neck healed over the weekend. Lots of hugs and happiness.
We head to chemo and everyone is telling Jim congrats on his very last one. These nurses are amazing and we have been so blessed to have them provide the care they have given Jim. Jim’s labs came back good and his doctor was happy with everything. The pharmacist sent Jim’s chemo bag over to him with a mini bottle of “wild turkey” attached to the bag. It was so funny and great. He came to shake Jim’s hand and they both agreed that Jim is “the one” guy that got through this without what they said would probably happen. He didn’t need to take a leave of absence from work. He didn’t need to use the PEG tube to eat. He didn’t have the most painful sore throat. It was a great feeling for Jim to finish this last chemo and thank everyone there for helping him through this.
Jim actually came home today and did 20 minutes on the elliptical trainer. His blood pressure was at 117/77 at the hospital today. He hasn’t taken any high blood pressure medicine in over three weeks. Crazy! Today has brought many happy tears.
Tuesday November 19, 2013
The countdown is on. 3 radiation treatments left after today. Jim is full of energy and knows he can get through this week. Eating is not fun, but he doesn’t even care. He had a yogurt, latte, peaches, 30 gram protein drink, ramen noodles with a chicken breast today. As well as both Juven drinks and multiple bottles of water. He worked a full day.
Wednesday November 20, 2013
Worked a full day after morning radiation. Developed another small mouth sore in the same spot as before on the inside lip. No other problems.
Thursday November 21, 2013
Went to radiation. Doctors gave him his discharge papers a day early. Basically they state when he needs to make follow up appointments with his main doctor of oncology, radiation and ENT. It’s overwhelming to know this is a lifelong after care now. However at that same time overjoyed to know we have another life time ahead of us 🙂 Jim is tired today and only worked until 3:00 pm. Also found out today that his thyroid will have to be checked regularly now due to the radiation treatments.
Friday November 22, 2013
This is it! Last day of radiation treatment! It’s such a happy day, but emotional one as well. We took our boys with us to the hospital so that the four of us could be together to close this part of our journey. Jim took his red superman cape and used it as his blanket during radiation. He played Van Halen through his last treatment and left his Journey cd behind for the techs and other patients that may need it to get through their own treatments. It was bittersweet because he was so relieved to be done but at the same time these are the people that have become closest to him over the last few months. There were lots of hugs and tears.
Saturday November 23 through Saturday November 30, 2013
First week post treatment….. Not an easy week. Matter of fact, it sucked. Jim’s tongue is very sore. Eating food is extremely difficult and tiresome. Yes, he does eat and drink fluids but nothing compared to what he used to. I feel bad because I told him it’s hard for me to be around while he is eating. It just looks like he is suffering. He still refuses to take any pain reliever. Sneezing and coughing kill him. He also says its feels as though little shock waves shoot through his tongue. He is very tired and grouchy. Although he would say it’s the other way around.
We had some friends bring over a quiche and pumpkin bread on Monday and Jim actually cried because he could eat it easily and taste most of it. It was a sweet moment but by Thursday, Thanksgiving, he was hardly eating anything. Lots of water, tea, coffee and his 2 Juven drinks a day. Maybe a protein shake too. He has lost about 25 pounds since radiation started. I’m not going to lie, I think he likes the fact that the weight is coming off and doesn’t make not eating a total hardship on him. Me on the other hand, it totally infuriates me that he is not putting enough calories or protein in his body on a daily basis. I keep telling him that’s how his body will heal faster but all it does is cause a major argument between the two of us
This week has also brought back all of original insecurities about the outcome of treatment. It’s hard to sit back and wait for the PET scan to be done and find out his fate. We met with his main Oncology doctor on Tuesday and though Jim’s labs were good, she does not sugar coat anything nor give any sort of false hope. Knowing that even if his scan is clean, these next few years will be filled with appointment after appointment with her and the ENT doctor. Also having Jim’s PET scan scheduled for Christmas Eve is hard. I asked if it’s possible that she will call with the results that same day and she said yes. Needless to say, that will be on our mind every day until then. Sometimes it just feels like you got to put a smile on your face and fake it.
2nd week post treatment
A better week. Food is easier to eat. Taste buds still gone, but the swollen tongue feeling has subsided quite a bit. He took Tylenol a couple of times earlier in the week and has felt so much better. Sneezing and yawning still hurt. Quite a bit night time coughing.
3rd week post treatment
taste buds are slowing returning. It is still painful with spices. Minty gum is not easy to chew. Jim can chew it for about 5 minutes and then needs to spit it out. He chews juicy fruit quite a bit and has pretty much stopped taking his saliva pills. Pain is still apparent when yawning. Food is boring to eat because of the lack of true flavor. Jim usually eats just a small portion at a time or skips eating all together, which is seriously making me mad. He has probably dropped about 25 pounds (which he is happy about!) he drinks at least 4 cups of coffee a day per doctor’s recommendation. Nighttime coughing has almost disappeared completely.
4th week post treatment
First follow up appointment with the Radiation doctor. He still believes Jim will have a clean bill of health from the upcoming PET scan. He said there is probably only a 5% chance of any residual cancer left in the lymph nodes and if that is the case, it’s an easy surgery of just plucking it out. He says Jim’s taste buds can take up to a year to fully recover and maybe not ever back to normal. Jim is okay with that. It’s a small price to pay for the rest of your life back! His eating has been better this week. We laugh that he is the only one not gaining weight during the holiday season. It’s seems silly to joke about it considering everything he has gone through in the last six months, but that is where we are finding strength, through laughter and prayer. Tears still fall every once in a while. It’s hard to reflect on the past. It’s hard to believe everything he has endured.
5th week post treatment
Christmas Eve Morning. 7:45 PET Scan and CT scan. Jim watched his diet carefully yesterday and ate high protein and drank lots of water. Scan time with drinking two delightful (haha) shakes took 2 hours total. We went as a family and he was out at 10:00 am. By 2:30 pm his doctor called with preliminary results. No signs of cancer!! It was such a joyous moment. When the call came we sat as a family and waited to hear the results. It was such a blessing and our Christmas truly held a special meaning of thanks.
Jim still had a small amount of fear that maybe the final results may still hold some bad news. We needed to wait until 12/26/2013 to hear that report.
12/26/2013
Met with his doctor and both scans are great! The lymph nodes show no signs of cancer and are back to normal size. The tonsil area showed some sign of activity but nothing that they are concerned about. She believes it is gone and now Jim just needs to be proactive and follow up with his doctors regularly and lead a healthy life! His first appointment will be in 4 days from now to remove the port and peg tubes! Yay!
****ironically since treatment has ended 5 weeks ago, Jim is so at ease with his peg tube now. He has completely taken over flushing twice a day and cleaning the area along with taping it on his skin all on his own. I know this may not seem like such a big deal, but for any person that is like Jim that could not stand the thing; they will understand how huge that is. As a spouse that had to be there for 4 months to take care of it, it’s a big deal.
I think once he made it through treatment not having to use it, really made the difference to him and realized how strong willed he really is and this peg tube did save his life even though it was not used!
Next appointment after the removal of his tubes is scheduled in January with the ENT to insert the camera scope through his nose and down his throat to check for any signs of growths.
December 31, 2013
New Year’s Eve! It may or may not have been noticed, but Jim wore the SAME outfit to Chemo every single time! He always said from day one of induction, that when he was finally done with treatment, he would celebrate by burning those clothes. He would never be reminded of his treatment defined by his clothes. Our amazing friends, The Owens Family, who have been there from the beginning for every ounce of support needed, hosted New Year’s Eve at their home with a roaring fire pit! It was awesome and Jim threw his shirt and shorts in to that fire with a huge sense of Celebration. It was a great release of the past year to let go of. A great way to celebrate the hope of the New Year ahead of us. Hope is everything!
June 17, 2014
First CT scan since the PET scan. Jim is obviously very nervous today. He is so scared there will be something to find on the scan. Great News! Everything looks clean! His doctor told him that he will not need to have another CT scan until next June. It feels like such a relief. He knows he just needs to see the ENT for quick scopes and follow up labs. So thankful.
One Year Later Update! 11/22/14
The road to recovery has been long and hard. There is no way to sugarcoat it. Jim’s taste buds still have not fully recovered. For the first nine months his mouth felt raw. Anything with the slightest amount of spice sets his mouth off into a fire storm. It is painful and upsetting. Any food that is natural, such as meat, potatoes, vegetables and coffee, Jim can taste. Anything that is sweet such as fruits, desserts and chocolate has no flavor at all. Around the ninth month mark, Jim started to taste a few bites of sweetness. After those first few bites though, it goes away again. A lot of food items taste like pure salt. It’s easy to say “well it beats the alternative” but the truth is, it gets frustrating. It will wear you down. Food is such a part of your life, that sometimes you just miss the comfort. We were told, it will get better and you know, it does. Little by little.
The yearly doctor appointments were hard too. There is always fear. Jim has alternated between his oncologist for blood work and scans and with his ENT for every three month checkups with the scope going down through his nose to the back of his throat. All checkups have been clean! He has had to begin taking a daily thyroid supplement due to his thyroid being slowly killed through the radiation treatment.
We are extremely grateful for this year and because of his clean bill of health, his appointments have now moved to every four months and his next CT scan is not needed until June of 2015.
We are celebrating this 11/22/14 with a party of friends and family who have been there for us during this crazy ride. It’s going to be a great night! The past is the past, the future is not here, All we have is today