Little Breakdowns

September came and Bill had his scans. He was supposed to have both the CT and the Pet scan the same day, but when he got through the CT, he was in too much pain to be able to lay down for the full Pet scan. He had to return on October second to do the Pet scan over. When you’re waiting on results for those things, days seem to last an eternity.  This wait seemed longer than the rest have been, although they all seemed like an eternity.

Finally he went to his long awaited doctor appointment. I wasn’t able to go with him because I had to work. So my friend took him. I specifically wanted her to go so she would hear what the doctor had to say, because I had figured that he would forget. The doctor had really bad news. The cancer had grown again. It had been shrinking as of the last scans. But now each of the tumors had practically doubled in size. The doctor told him that the immunotherapy had stopped working and he wants to put him back on conventional chemo. My husband said “no”. The doctor was not happy with him. I’m not totally sure what is going to happen next.

Bill is currently gone, he is on his cruise with our friend. When he told his doctor that he was going on this cruise his doctor asked him if he was serious. Of course he was,  apparently his doctor thinks that he’s completely crazy for going. I happened to have an appointment with my rheumatologist that same week. I told her about him going on a cruise and how his doctor had responded. She told me that he absolutely should go. Her grandmother had died on a cruise, she died happy doing what she wanted to do. I think that he really just needed to do this. He’s on the cruise and I ma here working, but for me this is a bit of a vacation. Well, as much of a vacation as I can possibly have right now, with my stress level and mounting sleep problems.

What I guess his doctor hadn’t told him about his scans, was the other problems that have arisen. I sat and read the whole report, with Google by my side. Some of it really wasn’t in English. But what I did get out f it was that he has developed fluid on his heart, and his “Aorta is aneurysmal”. Which I guess means he could have and aneurysm any time. He didn’t know about it, I didn’t tell him right away either. I debated over whether he should know or not.

I messaged his oldest son’s ex and told her what was going on. I asked her if he could bring him down. Because I know that boy would drive 100 MPH and end up dead or in jail before he could make the 170 mile drive down here from the KCMO area. We didn’t even tell him what’s up. She is a manager at the same place that he works at, she arranged for both of them to have time off , and she drove him down. It was good to see them. I felt like he needed to see his dad, because we don’t know what’s going to happen tomorrow. They stayed the night and left the next morning. While they were here I informed our boy and Bill at the same time. It was emotional and raw, and hard. I’m not sure I should have, but I wanted them to appreciate having a day together.

Bill broke down down a little. He had a hard time maintaining the stoic demeanor that we are all accustomed to from him. He had a few tears. I think it’s good for him to cry a little. I doubt that he had since he was probably four or five years old, other than a couple of times lately. I don’t know how to comfort him. He isn’t like most people. Dying isn’t like most things. I know there is a message in all of this for me, besides the fact that not everything is about me, even if it feels like it sometimes.

I’m trying not to fall apart and crumble away into emotional dust. Some days have been tough. I started taking Prozac about a month and a half ago. I think that it helps. My moods seem to have leveled off and I hadn’t been quite so tearful. I’m still struggling with anxiety, that just doesn’t seem to want to go away. I had gone about three weeks without a single breakdown. I think I was sort of flat. I hadn’t even realized it. I was at work out on the road when the first breakdown came. I was driving, alone in the middle of nowhere when the tears just came. I don’t know what brought on this crying jag. It just seems to have happened. Afterwards, I felt sort of relieved, not from the anxiety, but relieved that I am still human and even with the Prozac, I can still feel enough to have little mini breakdowns once in awhile.

Another family crisis has arrived, I wont go into it, but it is a major one. Serious bad stuff. I’m not ready to talk about it with anyone. I had a hard enough time forming the words to tell my husband last week. It’s big and bad, and awful. I’m a little surprised that I am still functioning.  I don’t know when or even if I’ll ever really be ready to talk about it. I’m a little broken right now. Maybe more than a little. Writing helps, somewhat. I’m glad that I was already on the Prozac, I don’t know how I would be dealing at all without it.

The little breakdowns haven’t turned into huge breakdowns. Hopefully, I can keep functioning at a somewhat normal level and have little 10 minute breakdowns, instead of slipping into breakdowns that last for days. I might need to add an anti-anxiety med next time I see the doctor.

Anyway, I didn’t mean to make this about me, as much as that has come out. I think I just need to let some stuff out, before my little breakdowns turn into mountain sized breakdowns. I’m not going to implode, even though the last six days has made me want to implode, explode, climb under a rock, commit murder, disappear into nothingness, etc. We will get through all of this. I’m feeling pretty positive that Bill will make it home from the cruise, even though he isn’t sure. He texted me from Texas, telling me that he thought this trip was a bad idea. I told him he was going to be fine. It isn’t like the first bad idea that we’ve acted on. For now we just breathe and deal with each little breakdown as it comes.

Prozac and M&Ms

 

 

My husband is still hanging  in there. I am surviving day to day. We have good days and bad days. There are days that I think could be the last and days that make me think that he’ll beat this. Cancer is an ugly thing, it steals life and it plays games, it dangles possible hope in front of people only to pull it back. I’m sure that cancer laughs at us at every turn. It probably thinks that human suffering is the funniest damn thing that it’s ever seen. I picture cancer as some sort of mischievous demon, like part Loki and part Satan. It uses needles just like a voodoo high priestess might jab a doll, so does cancer jab, but it jabs the patients. It brings horrific pains, very suddenly. Unfortunately they don’t leave near so suddenly. They linger, the misery slowly destroys the patient’s spirit, while the demon chortles in his joy. Thank you Lewis Carroll for the perfect description of the behavior of the ultimate sadist, cancer.

In addition to breaking the spirits of the patient and the anxiety that patients in the end stages seem to drown in, it creates this amazing anxiety in family members and other loved ones. We’ve been dealing for over a year. It’s been getting harder and harder every day. The tears come easier and the laughter comes harder. I have finally thrown in the towel. I’m tired of dealing on my own, I’m just not that strong at this point, but I have to stay strong for the kids, because I am all they have. There is no grandma or aunt or anyone else to turn to. It’s painful,  it’s frightening, and I have reached my breaking point. I finally went to see my doctor today and I’m adding Prozac to my M&M regimen. I’m hoping to get some peace. I don’t have high hopes, mostly because I don’t want to be disappointed if Prozac doesn’t “fix me”.

I don’t mean to be so selfish, I bet I sound like a terrible person, but right now I’m so burned out from being the main caregiver, I’m so glad that my kids have been able to take up some of the slack, like when I’m at work or running errands. They have done a great job dad-sitting. So, I’m not 100% alone in this and I have an amazing friend that takes up so much slack when I’m tied up. She takes him to appointments when I’m working or stuck at other appointments. She is amazing and wonderful and sometimes I feel guilty that I can’t do more for her. Hopefully I will be able to manage to be more there for her soon too.

When I made my last blog post, Bill was having a very bad week. He was incoherent and quite frankly more than just a little off his rocker. Since then he’s been more lucid, although, he’s had a few days where I felt like his mind was gone. Today he has been mostly coherent, although pretty frightened. He hasn’t wanted to have any deep conversations about religion or spirituality. Today, he told me that he is afraid this is all there is. I tried to bring him a little bit of comfort by telling him my beliefs. I am Pagan and of course I believe that there is more after this life. I gave him evidence of reincarnations that I have seen in my research. I asked him if he wanted me to get a priest for him because he was raised Catholic. He said no, he is having a lot of doubts, He asked the ultimate question that most people questioning religion default to “If there is a God, how can he let major disasters happen and children die?”. I don’t think my answer is acceptable for someone who is in that head space. I don’t believe in an all knowing “God”. I believe more in “The Force” which is kind of a malleable energy, I believe in minor gods and goddesses that we pray to for help to push some energy one way or the other. Much the same as Catholics pray to saints for favorable outcomes with God. But I digress.

Basically, this is our update. We are continuing to move forward, struggling, but surviving. His pain levels some days are insane and other days, not bad at all. He feels cold to the touch and is continuing to lose weight, he’s down to 215 from 385 (or maybe 380). To me it feels like he is winding down now. But I have thought that before. He could have a sudden bounce back. He could do much better for a few weeks. He has things to look forward to and to live for. He had a free cruise that he had received on our last cruise. He’s going in October. I have to work, so I can go. He’s going to go with a friend. We’re also trying to get a football game arranged, so that he can go see the Cleveland Browns (his home team). We also have a cruise with friends scheduled for January, I hope he makes it that far, it’s hard to know if that’s even a possibility.  He’s going to have another scan in September, but we don’t have a date yet. We are hoping for a pet scan instead of another cat scan, which will give us a better picture of whether or not the cancer has spread elsewhere or has stayed put.

So for now, we are standing on the same ground we have been all along. Shaky ground that is narrow and on a fault line, high above a valley. Only mildly wider than a tight rope. There is nothing more than substantial than air to hold onto. There’s no net underneath us, no huge air bag, or trampoline to catch us if/when we fall. There is no bright shining light at the end of our tunnel, there is a downward spiral, followed by smoke and ashes.  It seems inevitable at this point. But we need to keep our little light alive as long as we can, regardless how ridiculous that seems to be. Because that’s all that we have, that miniscule one ounce of hope. Sometimes, one ounce is all you need. I mean after all, how much is an ounce of gold worth? Maybe it only takes an ounce of hope, strength, fight, etc. to cage a demon. Those things plus perhaps a couple of pounds of M&Ms & a few ounces of Prozac.

Confusion, Occlusion, Delusion

It’s been a while since I have given an update. Bill had his scan in mid-June. We had to wait nearly 2 weeks to get the results. A few days after his scan we left on our yearly camping trip. We camped for 8 days as we do every year. It was both good and bad for him. The heat was hard on him. But he didn’t have to take a breathing treatment with the nebulizer the entire time. We learned that his Fentanyl patches dispense much faster when you’re hot and sweaty. Consequently, he was pretty high that week.

I think that the trip was good for him, being out in nature, spending time with friends, and basically getting him out of our depressing house for a while. I know it was good for me. It was a great week of spending time with people who I love and getting closer to some people who were just acquaintances before.  I think the time in nature, in the darkness, in meditation were all very good for my soul. I did a lot of good thinking out there. I did some healing.

When we came home on that Sunday, we still had to wait until Tuesday for results. The results cam back quite mixed and really confusing as far as trying to figure out a prognosis. The report isn’t really in English, it uses words like “parenchyma”, “mediastinal”, and “adenopathy”.  Some things say that there have been improvement, some things say they are unchanged, some things are worse. It just leaves me wondering, if this one thing is better, but this other thing is worse, how exactly should we take it?

“The occlusion in the left upper lobe  pulmonary artery branches due to the left hilar mass is unchanged in appearance compared to the prior study/ is unchanged… left hilar mass and adjacent consolidation and volume loss have improved”…. It goes on and on for two pages.  Anyway, what I got out of the report in the land of best guesses, since my background is non-medical in any way, is that some of the tumors are better (one of them is currently 3.1 x 3.4mm but was previously 6.0 x 3.4mm). Some of the lymph nodes “have resolved” others have not. There is “no pleural effusion, but there is diffuse pleural thickening” whatever that means. “Adjacent new rib destruction is noted. lytic rib destruction neat the apex of the heart is unchanged.”

There is a lot more to the report. But it all sounds pretty much the same. For every good thing that has happened there is either one that is unchanged or worse. I have no idea where this places the future. When we started on this journey a little over a year ago he was given six months to two years to live. I have no idea if there is any change to that time frame or not. He has good days and bad days.

The heat has been a big issue for him the past week or so. We are back to too much medicine releasing  too fast. We can’t do much about the heat. Our air conditioner hasn’t worked since year before last. So it’s pretty miserable in our house. I can’t believe that it took me a few days to figure out what was causing his complete and total incoherency. I mean after we had that experience camping I should have known. I’m not sure what we’re going to do about it yet.

Things were rough the past few days. He’s been so out of it that one morning he told me that he was a doctor. Basically that the Army had made him a doctor, when in fact the Army had made him a truck driver. I suppose that it could be confusing, you know doctor/driver, pretty similar words. He asked one of the kids whether or not the ship had ported. I suppose he’s ready to get off the ship for a bit, however, we aren’t currently on a cruise. We had an argument because he wanted his pickup keys and wallet, I told him he shouldn’t be driving in his condition. I suspect that in his heart he knows he shouldn’t. I eventually brought him his keys and wallet, because he can be the most stubborn individual in the universe. However, he did not go any where. I guess it might have been some sort of test? Maybe?

He came in the house the day before yesterday (he had been sitting outside), and told me that the neighbors across the street were fighting, I asked him which ones and he pointed to two houses across the street. We’ve lived in this house six years and I’ve never once seen the one neighbor interact with anyone in the neighborhood. The other neighbor he pointed out is fairly new and never interacts with anyone either. He told me that he needed his gun. I told him he didn’t. I don’t think that he knows yet that I have hidden the guns. He finally forgot about it. He’s said a lot of curious things that past few days, some of them make me wonder like when he told me that someone pulled the trigger, when I questioned him he told me that he assumed it was one of his brother’s friends. Which could have been a reference to a real event, back in the day, his brother was a member of an outlaw biker club. Other things he says are so random that they have no basis in reality. One day he pointed at yet another house across the street and said “from what I read their wedding was done backwards, and it had something to do with the brochures, but their wedding came out okay anyway.” We don’t know any of the current neighbors, the ones we knew have all moved away, the rest haven’t been outwardly friendly.  But I digress.

There are days when I think he’s not going to make it through the night, and other days when I think he might outlive me. I spend a lot of my day checking to see whether or not he’s breathing. His breaths are so shallow and seem to be far apart sometimes. So here I am, confused as usual. It seems I spend a lot of my time doing that as well lately.

 

Uncertainty

Things were just moving along like they have been for a while now. Bill seemed to be doing okay, other than being depressed that he couldn’t talk. We were looking forward to his surgery. We had hopes that the surgery was going to fix his voice. I was trying to keep him as comfortable and happy as I could. I have been getting frustrated that I’m never here when I feel like he needs me. I’m always two or three states away. It’s been beginning to wear me down for a while now.

Finally the big day had arrived. We went to the hospital and everything was going fine. He was a little afraid that he might not wake up. A fear that I totally understand, I’ve felt that way before myself. We were there a couple of hours all together. The procedure that he was having done basically consisted of the doctor injecting some sort of gel into each vocal cord.

Eventually they came and took him back to surgery. I sat in the waiting room with my computer, getting some work (writing) done. After a couple of hours the doctor came and talked to me. He said that the surgery had gone well and that he was in recovery and it wouldn’t be long until he would be moved to a room where I could see him and wait with him until they were ready to let him go. The doctor told me that this procedure typically takes approximately one half a tube of the gel, but he ended using nearly two and a half tubes on him, “He’s such a big guy” (just for the record, he’s 6’6″).

I went back to the waiting room to await them calling me to go to whatever room they were going to send him. I picked up my computer, thinking I was going to have another twenty or thirty minutes to work on my book. It wasn’t even five more minutes when they paged me. I went to the nurse’s station and a nurse came out to meet me and told me that there were some complications and they were taking me to him because he had asked for me. When I got back to the room that he was in, he was sitting up with a mask over his mouth and nose. Apparently, as soon as they took out the breathing tube things started going bad.

It was sort of a frightening scene. He was having panic attacks. He was feeling dehydrated because the bi-pap machine that was breathing for him has a tendency to dry out your mouth. He wasn’t allowed to drink any water, but he was on an IV to keep dehydration going. He was practically writhing, gasping, and pulling at the mask. The nurses brought a cup of water and a couple of sponges. The sponges were on a stick and resembled a See’s sucker. They allowed hi to pull of the mask long enough to wet his mouth.

When the mask came off he was not able to get air at all. His face reminded me of that of a man I saw in a SciFi movie once. There was someone inside of an airlock and somehow (I can’t remember what exactly happened or even what movie), the air was sucked out and the guy in the movie died. But it was dramatic, his face lunged toward the camera and contorted. This was like this, only it wasn’t a movie, it was right there in front of me, in my face. It felt so up close. I was trying to remain clam and not cry or anything, because I didn’t want him to think anything beyond “everything’s going to be okay”.

He was given a breathing treatment of epinephrine, to try and reduce the swelling in his throat. He had a very hard time breathing any of it in. I have no idea how much actually made it anywhere. They gave him some valium, I’m assuming that was through the IV it was just before I walked into the room.

He got moved from postop to the ICU. We went through the drill of taking off the mask and dampening his mouth with the sponge, several times. I had to try and calm him, but on the inside I was pretty well shaken. I did my best to talk him down and not show that I was freaking out. I felt like asking the doctor for a valium myself. I probably should have. I had to keep reminding myself to breathe, all the while talking to him in a soothing voice, telling him that he needed to relax, everything was going to be okay. He kept swearing that he was dying. I kept telling him that it was just some swelling in his throat from the procedure.

Eventually, he was able to breathe without the machine. There had been a few times that they talked about putting a breathing tube back in. I let him have a few sips of water when no one was looking. I split my time between giving him back rubs, holding his hand, and rewetting the sponges. When visiting hours were over I stayed nearly an hour past. The nurse finally told me that I had to leave. He told me to sleep in the waiting room. Because he didn’t want me far away.

I went to the waiting room, there were no recliners or cots, like I had heard of from people who had family members in other hospitals. The waiting room for the ICU was just like any waiting room at any doctor’s office, other than the room was quite large. I tried to get comfortable sitting in a chair leaning over and putting my head down on the table (at this hospital most of the waiting rooms, at least in the cancer center has a table for puzzles). I couldn’t get comfortable. There was a lady and a man in the waiting room besides me. They were sitting on the other side of the room and across from each other, talking. She finally told the man that she was going to out tp her truck to go to sleep. I thought “that is a great idea!”

I went down to the parking lot and got in the truck. At first I reclined the driver’s seat. That was not comfortable. The temperature outside was in the forties. I decided that I was going to run home, get out of my jeans into some pajama pants, and grab my blankets and pillow. So That’s what I did. When I got back to the hospital, I texted him and let him know that I was in the parking lot. I climbed into the back seat and proceeded to get one of the worst night’s sleep I ever had. I discovered that the backseat was NOT designed to sleep on. But I did just the same.

I had a hard time getting up in the morning when it was time for visiting hours to start, but I dragged myself to the waiting room and waited for them to open the door to the ICU ward. While I was waiting he texted me impatiently, “Where are you?” “I’m in the waiting room.” I replied. “Are you coming or what?” Then I explained that the door was locked to the ward and I had to wait for them to open it. I finally got in and sat with him. After about 4 hours they decided to let him go home.

I was happy to have him at home. He seemed to be better, but he was still having real bad panic attacks and was still convinced that he was going to die. The next few days were pretty awful. He was regretting having the procedure done. It took days before he could actually talk. His voice is hoarse, but at least he has a voice now, after months of only being able to whisper.

Gradually things started to get better. His blood work was looking better, his color was better, he had a couple of really good weeks. He was seeming to act sort of like his old self. I was doing a pretty good job staying optimistic because honestly I thought things were getting better. A few days after his next treatment his pain got worse, then worse, and then exponentially worse. We went to the pain management doctor. The insurance denied the prescription. After going around in circles, we finally got a different med. The new med was fentanyl 25 patches. It really didn’t help. I was beginning to feel hopeless myself. He kept saying that he just wanted to die. It was days of hell. We didn’t sleep and we were both on the edge of insanity. You know that type of insanity that you step into when you haven’t slept in forever! Things were ugly, frustrating, and scary.

We went back to the pain doctor, he raised the fentanyl to 75s and raised his Percocet from 7.5s to 10s. He finally started to get some pain relief. Today, he didn’t take a 10, he took a 7.5 because he is home alone right now and is afraid to take them with no one there. He still is having panic attacks nearly daily, but I think they are getting better. I’m feeling like this roller coaster needs to dock at the damn station already and tell us that his therapy is working and everything is going to be fine. But we’re looking at 6 weeks before they will do a scan so we can find out if it is working or not. He has some new pain in different locations, the pain doctor wants to scan that, but I’m guessing that the insurance company is being a pain, because I haven’t gotten a call to schedule it yet and it’s been a week.

I’m having a hard time hanging on some days. I’m exhausted and I’m working a lot more than I had been before. Our financial position is shaky at best. My stress level is insane. I’m looking for a job that will keep me home. I am not dealing well with being away, the not being around to handle everything is really making me stress out. He can’t drive on his current meds, so he can’t take kids to school, he can’t go to the store, he can’t go to the doctor without help. I have wonderful people that help in so many ways, but I feel guilty asking for help. I am so very grateful for the wonderful people that I have in my life, but I feel like it’s my job and I should be there. I am afraid that my wonderful helpers will feel taken advantage of. I feel like I am failing my kids, I’m not there to check whether or not they did their homework, or to make sure that they are eating real food. I’m not there to make sure that Bill is eating, which is a big concern to me. I feel like the weight of the world rests squarely on my shoulders and I am made out of paper.

All or Nothing

It’s been a really long time since I gave an update. Unfortunately, I have been working so hard that I just haven’t been able to get to this. So, I believe that at the time of the last update, we were just hanging on to hope waiting on the results of a test that was done to see if the immunotherapy was going to be viable for him or not. He had just begun some radiation that’s purpose was to control some of the symptoms including coughing up blood and pain. The coughing up  blood did stop, but the pain began to increase. I was really getting worried.

Finally, after a couple of weeks we received word that the test that was sent off back east had good results, he had the right markers and was expected to respond to treatment. But we had to wait nearly a month for treatment. Bill was set to begin immunotherapy treatment on February 8th. His condition had begun to deteriorate so rapidly that I wasn’t 100% sure that he would live long enough to get to the first treatment. I was getting pretty scared. His pain had been increasing and increasing with every passing day. His hands seemed to be getting even more shaky than they had been and the cold, he’s been so icy cold to the touch.

Alas, we made it to February 8th and he received the first treatment. He tolerated it well. He didn’t seem to have any side effects from the medication. The drug that he is on is Keytruda. it’s  the same drug that Jimmy Carter was given. Keytruda is given as an infusion just like chemotherapy. It’s a lot faster than chemo, it took about a half an hour. I sat with him during the infusion. It really didn’t seem to bother him other than some anxiety he was having because we had read all of the side effects and he was tripping a little bit about it.

There was part of me that was overly optimistic, looking at any change as a positive one. I was looking for the pot of gold at the end of the rainbow and I’m not having much patience trying to find it. His pain seemed to continue to increase. It got pretty bad, his pain killers increased in both strength and frequency. For a while I thought that this might be a positive sign because when the Keytruda starts to work, it causes the cancer cells to bloat and basically burst and die. So I was thinking bloated cancer cells would mean they were bigger and I could imagine that causing more pain. So, I felt like it was beginning to work.

A week or two after the initial Keytruda infusion he had to see his primary doctor in order to get her to sign off for surgery that he is going to get to try to repair his absent voice (which has been gone since around August or September maybe). When she listened to his lungs, she heard air flow in his left lung. His left lung had been completely collapsed since at least April. But now there was air flow! I took this to be a very positive sign that the drug must be working. A week and a half after seeing his primary care doctor we went to the cancer doctor on the next infusion day, which is standard operating procedure. He listened to his lungs and confirmed air flow in the left lung. He received his second dose on March 2nd. I was so over the top positive for a while there that I have myself convinced that he’s going to be completely fine.

I am beginning to have some doubts now. His pain seems to be crippling, he’s still so cold to the touch and he always says he’s freezing. His appetite might even be worse now than it had been. His hands still shake. He’s beginning to become forgetful.  He’s having such a hard time of it now. I just want to cry. I wish I could fix it! I had become so definite about him recovering completely that I don’t want to believe that anything else. I’ve been through being convinced he was just going to die and them did this total 180. Now, I am having my doubts and I don’t know what to think. I’m just going to have to keep the faith and stay strong for him and the kids. I don’t know if I can do this. I hate the uncertainty. I’m not good at not knowing. The doctors won’t run another scan for a couple more months, so we have no idea if it’s working or if the cancer is getting worse. I have to keep on keeping on, somehow.

I’m feeling so confused and small. My strength is measured in ounces and not in lbs. I’m feeling tired, worn out, fatigued, exhausted even. I feel like I need to sleep for a couple of months solid, because a whole night’s sleep is not replenishing me. When I manage to get a whole night’s sleep. I just feel like laying down all of the time. My moods most of the time aren’t bad. Right at this moment I’m feeling down, but I think that’s because in writing this I am forcing myself to think about things. I just want to go back to believing that he’s going to be fine and everything is going to be alright. It feels like this whole cancer thing is a game of all or nothing and I’m just not dealing with that.

Moving Forward

We managed to make it on our vacation trip with all of the grandkids and some of our children as well as a few close friends. It was great to have everyone together I’m sure that I had the best tine because I divided my time in a way that I could spend as much as possible with everyone that I could. I think that the ol’ man didn’t have near as much strength as he tried to show. He tried to spend the kind of time that he would normally spend in the casino, but I could see the toll that it took at night before we would go to bed as well as in the mornings before he could get out of bed. I generally went and got breakfast and brought it to him in the cabin most mornings. I know that we could have called room service,  but he’s so picky the way he likes things that it was just easier for me to go get it for him. He wasn’t feeling well enough to go to the beach when we got to Cozumel, he stayed in the room in bed and watched TV. In Progreso, he did come off the ship with the use of a power chair that he rented for the cruise. He didn’t stay off as long as we did, the heat was a bit much for him. He went back to the ship and  I took the kids shopping before the kids and I returned to the ship. I’m just glad that we all got to have the time together!

Before we had left for our trip my husband had a PET scan done to see if the cancer had spread or not. We didn’t get the results until after we got home. He was supposed to have a brain scan (I think MRI, but I don’t recall) done before we left, but wasn’t able to do it. When we got back he got a CAT scan done on his head instead. It was much quicker and easier on him.

So, this brings us to results. The radiation doctor (who we like) called me to tell me the following. The PET scan showed that the cancer has in fact spread. It is now present in the adrenal glands, abdomen, and in the ribs. There is also a possibility that it has spread to the lymph glands in his neck. He is going to get a biopsy done on those to be sure that it is the same thing or not. She wanted him to do some radiation in order to help control some of the symptoms, such as the pain and the coughing up blood.

This was prior to the CAT scan being done. Later that day we go the CAT scan done. The next morning we got a call from the Chemo doctor, he wanted us to come in. So we went in to see him. He read the results of the CAT scan and told us that it was good. So no cancer in the brain. I had to ask the doctor to confirm for me that he does in fact have a brain, he told me that there is in fact a brain in his head.

The chemo doctor also talked to us about the possibility of immunotherapy. This is exactly what I had wanted to talk about since the whole mess began. So this is the thing, either it will work very well, or not at all pretty much. The doctor sent some tissue that they have on file from Bill’s original biopsy, to somewhere back east, Baltimore I think. If the medicine kills the tumor on the sample that they sent then he would be a candidate and there would be a really good chance it could work for him.

So our hopes all lie in the possible death of a chunk of tumor in a lab somewhere back east. There is a part of me that is very excited at the prospect of this whole thing. But I am afraid of the other possibility. There is a chance that he’s still just screwed. But he was just screwed from the beginning. Now there is hope where there was none before. I mean he could be totally fine, which is what I’m banking on. I never thought that he was actually going to die. I know the man too well, he’s too stubborn and too much of a brat to die. When we got the original diagnosis, and we were told the prognosis was so bleak, I never truly believed it. Now we have his possible “out” right in front of us. I am hoping upon hopes! But a little bit terrified that it won’t work, or the insurance won’t pay for it. Oh, yeah, did I mention that it costs $246,000?

Yeah, $246,000, no wonder they make a patient do chemo and radiation first. I’m guessing that the insurance companies are playing the odds, that a certain number of people will die from the chemo and that would save them thousands and thousands of dollars. But that’s my cynical self, the self that believes that so much of the healthcare system is run by dark forces that are part of some kind of conspiracy to get rid of the poor. But I digress.

He started the radiation yesterday. Today was the second session. He’s got some pretty good pain going on, hopefully the radiation will curb that. He has been coughing up less blood, so that’s a good thing. Hopefully, it will all get better. I don’t know how much better the radiation can make things. I’m just going to hope that the immunotherapy is a go and it works for him.

So, we have some hope that we didn’t have before. I have a lot of hope. There is part of me that has been in denial from the beginning. I have felt to some extent all along that he can’t die, even though I have spent a lot of time trying to prepare myself for what is supposed to be then inevitable. I have tried to figure out how I am going to do things after he is gone. Now I am trying to figure out ho we are going to do things if/when he gets well. I have to hope and I have to give the idea power. I have to bring it into reality. I feel like there is so much pressure on me to imagine it into being.  So, I will do what I do and try to work a little Magick, light a candle or two… or many! We will push what we can push and we will continue to find a way to keep moving forward.

 

 

 

 

No News Isn’t Always Good News

Friday night as I was on my way driving to Indianapolis, Bill called me saying that he had a fever and was having a hard time breathing. I called my choice sister and asked her if she could take him to the ER. So she ran over and took him to the ER. He was only there for about 3 hours, which isn’t bad at all. This is the first time he’s been to a doctor since he broke his rib, and that was the first time he went to a doctor since August. I think that he is trying to avoid receiving any news. I suppose he thinks if he doesn’t see a doctor, they can’t tell him that the cancer is progressing. Insulating ourselves from the news, doesn’t make the news from happening.

They gave him a couple of breathing treatments, and some IV fluids. I’m sure he was probably dehydrated, he doesn’t drink much water. The doctor said that his left lung has ceased to function, which wasn’t a big surprise to either one of us.  They sent him home with a nebulizer, some antibiotics, and some steroids. All very common stuff for breathing issues. Being an asthmatic myself, it’s just SOP to do that stuff nowadays. When I was younger it was a different story, but one not for this time.

So he gets home and he’s still having breathing issues, but now a good portion of it is from the panic attacks. The panic attacks are coming much closer together and lasting much longer. After I got home from work on Sunday he let me know that the doctor had said something to him that he wasn’t ready to hear. And quite frankly neither was I when he told me that the doctor had told him that it’s time we contact hospice. No wonder the panic attacks are increasing in frequency, length of occurrence, and intensity. This is some intense stuff! I am beginning to become more and more worried about him. I’m beginning to feel the panic of the situation.

This man, who has been my savior at times and the bane of my existence at other times may not be with me much longer. I am scared, I am confused, there is so much undone, unsaid, unlived. I can’t force the issue, but there is so much he doesn’t want to talk about. I suppose I can’t blame him, but I want to make sure that I am doing things right. I don’t know what’s right. I don’t know if I will ever know what’s right any more.

The concept of being a widow is completely impossible for me to fathom. It just doesn’t compute! I try to think of my life after he is gone, I try to keep it positive. I try to think if good things. I keep trying to skip right over all of the scary stuff in front of me and try to picture myself living a happy life, because it’s a way to reassure that I will be alright. But I don’t know what is alright. How can anything be alright right now? What am I going to do without him?  What am I going to be able to do? Am I going to have the strength to push forward? To create new things? To have a life? I try to think that I will be fine, but truthfully I don’t know if I’ll be fine. I don’t know what I’ll be. Will I be able to breathe? I’m barely breathing now. My heart feels like it has stopped, the world feels wonky, weird, sort of empty…Like the Tin Man’s chest: thunk, thunk, thunk. Echo, Echo, Echo.

I think that I am actually more afraid of his death than my own, at least if faced with death I feel as if  I have made a certain amount of peace with that. But for him, he has made no peace, he is living in shear terror of when the moment comes, which I am sure cannot possibly be healthy,  or life promoting. I am also very afraid of what his death will look like. I pray that it’s peacefully in his sleep. I have seen death happen that was not peaceful, but rather fearful and I pray I never have to see that again. It was terrifying to me, how my aunt gasped for air in those last seconds of her life. She was terrified. I am afraid for him, I hope that he can make peace with it. We have lived good lives, yes there have been plenty of hard times, it hasn’t always been easy for sure. In fact you could say that a lot of the time, it has been down right difficult and nearly impossible to get through, but we have gotten to go places and do things that a lot of other people don’t get to do.

Instead of death we need to focus on life. We need to live right now while we can, while there is a right now! No ne knows what the future holds and how many minutes are left in one’s life. We need to not make excuses and make sure that we say what’s on our minds and in our hearts. We still need to try and have some adventures. We need to not give up on fun just yet. We need to try and carry on. And I am not willing to call hospice until after we go on our trip. I don’t want to even think that there is a possibility that he won’t be here for it. He has to be and that’s all there is to that.

You see we have a trip planned, we are taking all of but one of our grandchildren and five of our children and 2 spouses. We are going on a cruise with them January 2nd out of New Orleans. AND DAMMIT, HE BETTER STILL BE HERE FOR IT!!! This is probably the very last time that we will travel together. I’m hoping that he is going to be well enough to make the trip. He better be walking, talking, breathing, laughing, joking, being his normal sarcastic self or at least breathing and smiling.

I hate to  bring this into my blog, but we are struggling right now. The trip has caused some money stress and it’s been hard for us to come up with everything that we need for it. We’re a little bit short. Which of course is weighing heavily on our minds. I do have a gofundme if anyone would like to help. If you can’t send money, or don’t want to, your prayers and good energy are very much appreciated!

 

 

 

Signs

It seems that these days are filled with reading the signs. I have never been good at “reading the signs”. I have been told many, many times that I should look for the signs in things, but it just seems to go right over my head. I have no idea what it means when my tree is full of ravens, or when I find a silver button in the parking lot, or whatever. I know that there are people that “read the signs” and can tell what is going to happen from the signs. I think I am just not a reader of signs. In fact I’m not good with the concept of making inferences. My brain is too black and white. I may be a “unique” person, perhaps a bit eccentric, or maybe just weird. But me thinking “outside of the box” to remedy a situation is not likely to happen easily. I am a slow processor, a contemplator, I take my time with things and examine evidence. This is the only left brained part of me. As I am more of a go with the flow kind of person than I am one that lives within the confines of “normalcy”. And as much as I would love to be a psychic, it just doesn’t seem to be within my realm of possibilities. If I get a “feeling” about something it is more than likely subconscious wishful thinking. I wish that I was one of those people that saw things or just inherently knows things. It would surely make my life easier, wouldn’t it?

The signs that have been in front of me lately are confusing, I’m losing sight of what is a bad sign, good old fashioned paranoia, a good sign, and what is wishful thinking. Bill had a few bad days. He was having problems catching his breath, he’s been cold a lot of the time. Then the pain started. He was having a pain in his side that was so bad that he was having a hard time sleeping. These things seemed like very bad signs. The pain might have been the most troubling. He hasn’t had any real pain with his cancer. This definitely seemed like a sign that things were going down hill. We ruminated over the pain for days. Maybe it’s this, or maybe that. We debated, was it the cancer, could he have a kidney infection, could he have possibly broken a rib somehow? I finally talked him into going to the urgent care to find out for sure. We were at the urgent care for hours. They drew blood, they took x-rays, we sat, we waited, then we sat and waited some more. Finally the doctor came in to talk to us. It was a broken rib. I have no idea how one breaks their rib by laying in bed, but apparently it’s sort of common.

I asked the doctor if maybe the bones were more brittle because of the radiation. I know that my mother had radiation for her breast cancer and a few years later she had open heart surgery, When she had the surgery  she ended up having to stay in a rehab hospital for about 6 months because the bones in her chest kept crumbling and wouldn’t grow back together. Of course the doctor was not willing to speculate on such a thing. But now we had a diagnosis, a source of the pain and our minds were put at ease.

One weird thing that came of this visit to the urgent care was the x-ray. One the x-ray, the cancer was not visible. The doctor said that she couldn’t see it. The radiologist didn’t see it either. It was originally caught in an x-ray before he went through all of those tests (MRIs, CT Scan, Biopsy, etc.). So now I’m wondering, is it shrinking? Is it small enough now that it isn’t obvious? Am I just letting my imagination run away with me? Am I filled with wishful thinking? Is there something to this? I have no idea, but I will say that he has gained 10 lbs in the past few weeks after losing 100 in the past few months. I’m hoping that these are actually good signs of healing. I have no idea in reality, but I am crossing my fingers and hoping for the best!

There is one troubling “sign” that reappeared last night, his hands were shaking, which has happened off and on since he began the chemo. Even though he stopped the chemo after just one week, sometimes he still has the shakiness. His voice hasn’t really come back yet either, but his hair seems to be making a come back. These are the signs that I see every day, and I wish I knew that I am reading signs and not just hoping that just because I want him to get well, that I can make it so somehow. But for now, we will continue with the remedies that we have been using and keep up our hopes that it is working for him. Hopefully I get an obvious sign soon that we are making  progress. A nice flashing pink neon sign would be nice. A tarot reading that uses specific language would be good, but the odds of that happening are probably not too high. So I will keep on hoping that I will get a sign that everything is going to be fine and that is a sign so obvious that even I could read it.

Post Chemo Post

In the last post I covered that Bill had quit the chemo and radiation after a week of treatment. I don’t think that we realized how strong chemo is. For weeks after stopping the chemo he has been weak, he has been tired, we have been scared. Three weeks after he quit the treatment his hair began to fall out. It fell out in large clumps. Every time he brushed his hair or took a shower more clumps fell out. After a couple of weeks of losing so much hair, my daughter came over and shaved off what little bit he had left. Now he is depressed about his hair and the panic attacks haven’t gone away.

The panic attacks became so intense that he was afraid to leave the house. In fact, he was afraid to leave the bed for a couple of weeks.  All trips to the bathroom (10 feet from our bed) have been as quick as he could possibly take care of business. It took probably 3 or 4 days for him to make it to the shower. About a week after he was finally able to make it to the shower, he made it outside to the mailbox- probably less than a 50 foot walk from our bed. I don’t know which is worse, the panic attacks or the depression. I had been missing his sense of humor, even if it was sometimes on the biting side. I was just hoping to see signs of life return to him, that spark, even a flicker of his wickedness would have brought a lot of relief. I had to do this, I had to make him well or at least survive for as long as I could push it myself. I just hope that my hands can heal the same way my great-grandmother’s hands were said to heal.

I remember when I was a kid I have heard tales of people bringing their sick children to  my great-grandmother for her to heal them. I guess that she must have done a good job. I know that I would not be here if it weren’t for her “healing hands”. My mother and aunt were twins, when they were born in 1938 each weighing just over 2lbs, the hospital sent them home to die because there was nothing that could be done for them. My great-grandfather built incubators that eventually became kitchen cabinets, because in those days you didn’t waste anything. My grandmother was horribly ill during her entire pregnancy and wasn’t well for a time afterward. My great-grandmother made baby formula from Karo Syrup and Evaporated milk, which apparently was somewhat common in the day.

But I digress, I am putting my faith into my hands. This is a huge responsibility because there is probably a larger percentage than not that I will screw up. However, the doctors’ treatments only gave him a 1-5% chance of living 2-5 years. The doctor told us 6 months to 2 years without the treatment. So, I figure if I can get him a year without being sick then I have truly accomplished something. I don’t know how others feel about this line of reasoning. We don’t know if this is the right way to go and we are still doing a lot of second guessing, but we are also still regretting the chemo. So there are not a lot of other ways for us to move.

We have had a million suggestions for “cures”, which I wrote about in an earlier post. I think that if we had an endless budget we would try a lot of other “cures”, but we have quite  a limited budget now that we have lost his income. I have been giving him Arsenicum Album (homeopathic arsenic) on the advice of a relative that happens to be a homeopathic practitioner. I have been making him a tea every night that is made from ginger, lemon, honey, and the Jason Winters’ Original Blend with Chaparral Tea. All of the ingredients that go into that mix have been recommended by multiple sources. I have him taking vitamin D and Turmeric, besides his multiple vitamin. I have him drinking water that has been “imprinted” with colloidal silver, I have been giving him oxygenated water (which we’re nearly out of), I have been putting water in a cup with a particular stone that was recommended to me because of its vibration, but I don’t remember what the stone is. I have found some videos on YouTube of different frequencies and meditations that are supposed to help your brain turn on your internal cancer fighting mechanisms. I don’t know what’s working and what isn’t, but I know that I am afraid to stop anything.

Since the end of March, when my brother-in-law died, my husband had lost over 100lbs. During and after the chemo he was so weak that he could barely get out of bed. He still is having issues with panic attacks, but he is doing better. He has been able to drop me off at work on Fridays and pick me up on Sundays. He can’t go alone, he has been having to take one of the kids with him. I think he’s afraid that something is going to happen and he won’t be able to call 911. However, it seems that having someone, anyone with him keeps him calm enough to make the trip. He suddenly in the last 2 weeks has had an appetite! He has actually gained 6lbs. Bill seems to be getting stronger and not quite as pale. I’m feeling good about these things, but it doesn’t mean that we don’t have setbacks.

A few nights ago he got into a coughing fit as people with lung cancer will do. I think it got out of hand and a panic attack ensued. Because then he couldn’t catch his breath at all. I ended up calling 911. I learned a few things. #1 the phone rings for what feels like forever. #2 they don’t keep you on the line the whole time here like they do in other places. #3 I could hear the sirens in the distance before I got off the phone. #4 the fire department can make it to my house ion approximately 3 minutes. #4 the ambulance takes about 2 minutes longer to get here. #5 sometimes you get better by the time the paramedics make it to you (but I also know that sometimes you die before they get there. I’ve seen that first hand, but that’s not a story for today).  Our kids had walked to the convenience store to get  ice water, on the way home they could see the ambulance for an entire block while walking home. Needless to say they were a little freaked out by the time they got home. Overall, I think we are making progress.

As of this moment I have some hope. I am still scared. I feel pretty stressed, but I try to by-pass the stress and just feel happy for this very moment. I have worries beyond life and death, I have money troubles galore, and I have been burning the candle at both ends between work and school. I feel exhausted and sometimes overwhelmed, sometimes I even feel inadequate. But I must push, that’s what I have to do, there are no options and there is no failure. I need to keep moving forward, it’s push, push, push, and then push some more. It’s life in the fast lane, but not in a fun way. I may be down, and I may be bent, but I’m not going to break. I am strong and my power is infinite. I will not lay down and let cancer beat us! Yes, I probably cry too much, or too easily sometimes, but I also remember to laugh and to love and those are the most important things that we need to do in this life!!! Go right now and tell someone that you love them, even if it’s just your facebook friends or your cat. Love is healthy, love is strong, love keeps us moving and breathing,  and love is the answer! Namaste!

 

And Then There Was That

After hours and hours, days, and weeks of discussion, pondering, and panic the decision was made to go with the doctors… They must know what they are doing, right? I mean they went to medical school and I did not. Bill worked all the way up to just a couple of days before the chemo and radiation were set to begin. He worked not because he really wanted to or felt like it, but because we really need the money. Physically he was feeling fine, other than the cough and getting tired a bit easier, cancer really hadn’t shown any effects.

The Chemo and radiation began the Tuesday after Labor Day. I was really afraid that he wouldn’t be able to drive so I came home from school as soon as I could, just in case I needed to bring him home. But when I got home he was already there. I asked him how he felt and he told me that he felt fine, but a little tired. Then he proceeded to sleep the rest of the afternoon and into the evening. I don’t know how much he slept during the night because even though I try to be some kind of super human, superhero, I really am not. Like most humans I need to sleep.

I think that a lot of my friends  look to me like I’m some sort of Wonder Woman, unfortunately to me it is painfully obvious that I’m not. Oh I try to, and sometimes I do a damn good job of making it look like it, but in reality I am not as strong as people think. I don’t accomplish near as much as it looks like I do. I’m overly emotional right now. I second guess everything that I do, my thoughts, my feelings, every little thing. I am confused, insecure, broken. I once rolled a semi-truck, my windshield shattered, but it was all there, there were no missing pieces that could be seen by the naked eye. But when I got to a motel afterwards and went to take a shower I discovered that my entire body was covered in a fine dusting of glass. At this moment I feel a little like that shattered windshield. While there are visible cracks everywhere, there are no pieces missing. All of that glass is holding on to a protective layer of film that prevents the driver from being cut to shreds, but it’s all still broken just the same. And the fine dusting of glass. makes my everything hurt.

I wrote in an earlier Facebook post that my heart-felt like it was made of lead. But  that isn’t really an accurate description. It feels more like a giant, a very heavy giant, taking huge slow steps, lifting its knee-high, then slamming it to the ground. One giant, heavy thud after another. I suppose that’s better than the jack rabbit heart beat of panic that we had a few days ago. Now my world moves in slow motion instead, looking for signs in everything.

After days two, three of radiation Bill started to have terrible panic attacks because of his claustrophobia. Anytime that he has been put into any machine for any test, he always has been given some sort of pill to help him keep calm. They haven’t given him anything for the radiation. To add insult to injury, they were restraining his feet for radiation. On day four, he went to his appointment, but sat in his pick up truck for a while. He couldn’t bring himself to go inside. He eventually went in and received his chemo. After chemo, he went down to the basement of the clinic, where they do the radiation. He went in, they made an attempt to get through it, but the panic set in and he was unable to hold still. The doctor told him to come back in the afternoon once he had  the chance to calm down. But he didn’t go back and the doctor’s office called twice, and he didn’t answer the phone. He had decided right then he was not going to do any more radiation.

That night he started feeling bad, weak, sick. Until this point other than being  tired, coughing, having less of an appetite and weight loss over the past few months,  he hadn’t displayed any symptoms. He had been feeling really fine, he was able to go to work. He was ale to go to the casino with some friends less than a month ago. He even was the one who did the  driving the hour and a half to the casino. But after just four days of chemo, here he was just a shell of himself. He is a man that is used to be the strong one in any situation, the one with all of the answers, he is the one that rescues everyone else. And then there was cancer, there was chemo, there was radiation, there was panic, there was uncertainty,  there was confusion, there was all of that and more. There was so much more that I cant’ begin to convey it all. There are no words. All of it is much bigger than words.

He did one more day of chemo. And then there was that, that final decision. That is that, his decision was made. He decided that he had let them put enough poison in his body and he was done with it. When Bill decides that he is done with something, there is no changing his stubborn mind. Trying to change his mind would be like telling the sun to stop shining. The sun is going to shine no matter what The Walker Brothers said. The sun is going to keep you warm, it’s going to brighten your day, but if you stare right at it, you’re going to go blind, if you try to hold onto it, you’re going to get burned. I had to respect his decision. I had to support it. It’s his life and what ever he chooses to do is his choice to make. I can cry and I can hold him. I can make him take his vitamins, but I can’t make him do anything that he doesn’t want to do.  The treatment made him far sicker than the disease. Now we just have to hope that he gets better than he has been the past few days.