He fought a valiant fight, right up until the end. I held his hand, told him I loved him, and that everything would be okay. Watched him take his last breath. Later, this evening as I sat here alone I told him again I loved him. That I wished more than anything that things could have been different. That he could have had more quality time to enjoy his golden years. I know he heard me.
I have had time over the past few months to prepare myself for this. It is not a shock, but still very hard to really grasp it at this moment. I am so very fortunate things have gone the way they have. I am here among friends who are a wonderful support group. I have a place to live and a means of paying the rent. I have relearned how to drive. And with him in and out of the nursing home and hospital so much, I also got used to being by myself.
It’s not going to be easy. There are still many tears ahead. The road is still a long way from smooth for me. But, I am going to continue this journey with as much grace, dignity, and style as I can. I have a son, daughter-in-law, and 3 of the cutest grandchildren on planet earth to do that for. I am going to spend time doing the simple things that I love doing. I am going to find solace in long walks and hikes. Let Mother Nature wrap me in her loving arms, help me to heal, and show me how to continue this new journey I’ve begun called Widowhood.
Back home from visiting Mr. Grinch. He ate half of a cherry flip from Bear Moon Bakery :) He also has a couple of muffins as should he feel like eating them. We had a good visit. PT came in while I was there and after he was finished with his PT exercises he was encouraged to do of them over the weekend. I said, "Don't worry I'll be visiting him over the weekend and make sure he does them." That earned me a dirty look from Mr. Grinch as he mumbled something about hiring me out to Helga's House of Pain. I just gave him one of my little grins and winked at Sarah as she laughed. They are used to our ways now, and have figured out why I call him Mr. Grinch.
He has a new roommate who seems very nice. So does his lovely wife Mary. As women do in situations such as ours we connected very quickly. Each drawing a little strength from the other as we watched each other handling what we are going through.
That's why I write these updates and blog entries. To try and reach out to others going through what I am. Let them know they are not alone. There are, far too many of us going through this type of situation. We see each other in the room and hallways of hospitals and nursing homes, and when we look into each other's eyes, an instant connection is made because we see a reflection of what is in our own eyes. We are the women, and men, who are doing our very very best to be good wives and husbands to our ailing spouses. We are tired, and so afraid we aren't doing enough. That somehow, we could something more, if only we knew how. We are battling a sea of emotions. Including terrible guilt at times for feeling some of the emotions we can't help feeling. We put our smiley faces on when visiting our spouses, and shed a million tears alone. We are love, we are compassion. We are the ones who if the battle is lost, will be the lonely survivors. Blessed be each and every one of us.
Good morning world. What a beautiful sunny morning here in the Texas Hill Country. I'm having a relaxing morning sipping tea and just chilling for right now. Later this afternoon I will go in and see Mr. Grinch. He is still very weak and at night having some trouble keeping his oxygen stats in line. He is still determined to try and get back on his feet. As long as he has fight left him I will do all I can to insure he has the opportunity to do so. As I told the social worker yesterday, as long as he can think and speak, and feels he can fight then that is what the game plan is. PT is working with him to give him that chance.
Yes, this is a heartbreaking situation to be in for both him and I. I am overwhelmed with emotions at times. Find myself in tears a lot when dealing with the nurses as I explain to them that no matter what they or anyone else feels, at this point the decision concerning Hospice is up to him as long as he is capable of making that decision. I've warned them we are dealing with an incredibly stubborn man who has already made it a lot longer than anyone thought he would at first.
Do I expect yet another miraculous recovery? Honestly, not really. But am I going to do whatever it takes to make sure he does have the chance to do that once again? You can bet the farm and anything you want that yes I will. That is something I will continue to do for as long as he can make that decision. After all he has bounced back in the past, so who am I to say whether or not he can do that again?
I visit him every day right now. Stay for a least a couple of hours. I know he is scared and wants me stay longer at times but in order to insure I can keep it together enough to help him continue fighting I have to be selfish and walk away at times so that I can pull myself together, and stay strong enough to keep doing that. I know he judges me a bit harshly at times for not being there more. I overlook that though because I know he is weak and scared, and draws strength and courage from me when I am there. Others may also judge me a bit harshly for doing the things I do to keep my sanity intact. I have only one thing to say to anyone doing that. "Come walk a mile in my shoes before you sit in judgement on me."
If death is coming soon, as the doctors and nurses seem to think it is, I cannot make peace with it for him. Only he can do that. All I can do is support him all I can while he continues to fight for life. Be there for him as much as I can, and keep doing what I have to in order to keep it together, and not wind up bouncing off the walls of a padded cell as I take this evil roller coaster ride of tears and fears.
The rainy weather today has made Mr. Grinch's first day in the rehab place a not so good one. When I first went in this morning his oxygen stats were on the downslide. Fortunately after a breathing treatment those improved and he was actually in to mid to upper 90's when I left.
Mr. Grinch did not get a good night's sleep. Seems his roommate is up all night playing loud Lawrence Welk and Johnny Cash music, and trying to get up. Which quite frankly, for Mr. Grinch and I, hardcore rockers that we are, having to listen to that all night is our version of hell on earth. Tomorrow the nurses are going to talk to the office personal they need to in order to resolve that situation. If that doesn't work, I'll step in.
As I was leaving I stopped to talk to his nurse. Her kindness reduced me to tears, and before it was over I was in a little room with two nurses who I will go to my grave remembering, and thanking for their wonderful support and kindness. One of the nurses who had lost her husband to cancer said, "It's an evil roller coaster." She is so right. I had said when I first started writing about our journey it was a roller coaster, but that wonderful nurse is right, it is a flat out evil roller coaster at times.
That's where the first part of the title for this entry came from. The other, well there are so many tears and fears for those of us taking this terrible journey. We many fears, including that age old fear of death itself. And we shed many tears along the way. Tears of joy, tears of sadness, tears of anger, tears of frustration. And if the battle is lost, tears of grief.
As a wife all I can do is stay as strong as possible and do my best to give him every opportunity to fight as long as he can, and wants to. That, and help make sure he doesn't have to keep listening to Lawrence Welk and Johnny Cash all night.
I have been driving again since September of last year, and after getting the Subaru Forester have become much more comfortable driving. I had learned the routes to the places I frequently go to, and unless I had to leave them, stayed within the comfort zone of those familiar routes. Today I spread my wings a little though. After dropping off the water sample in Comfort I headed to Center Point and paid a short visit to Lions Park. After leaving Lions Park I took the Old Tunnel Road and headed to Alamo Springs Cafe.
I had been longing for some of their good food, but had been a little hesitant of taking that very winding, at times narrow road. SweetPea handled those winding curves so well after a few moments I found myself relaxing and actually enjoying the scenic drive to my favorite eating spot. I was glad nobody was behind me though because I did take my time around some of those winding curves.
The feeling I got as I walked into the cafe is hard to explain. So many times Mr. Grinch had driven us there, then sent me in to pick up our food. I've actually only sat down and eaten there a couple of times with friends. So walking in the door knowing I arrived there on my own was both sad, and exhilarating for me. The hugs I got from a couple of my friends who work there made me feel so very good. I treated myself to a big basket of fried mushrooms, and the joy of sitting in amongst the hustle and bustle of their lunchtime run as I ate them.
I intend to keep on spreading my wings and driving to other places as well. Mr. Grinch is going to be in Cibolo Creek Nursing Facility for some PT Rehab again when he gets out of the hospital. Once he is able to go on outings again I want to be able to get us to our favorite places with confident ease. I will probably never feel comfortable taking on San Antonio traffic, but I can expand my comfort zones and once more be able to enjoy going to nearby places that I want to go to.
What follows now are the Facebook entries I made during what has been an extremely stressful, and at times, dark time.
Monday, April 7th
Sipping my first cup in bed while getting awake and ready to head in for Mr. Grinch's bloodwork. Glad to say he feeling better today than the last few days. Between the high humidity, followed by high winds, breathing has not been at all easy for him. The good news is even with that he has been able to keep his oxygen saturation levels up fairly good. Sometimes it is so frustrating, and yes terrifying dealing with this. As far as the chemo goes, well everything is actually going great because the cancer is responding to chemo. Unfortunately his battle is not just with cancer, but with COPD as well. Days like yesterday are a reminder that no matter how well the chemo is going, until it over and we can focus more on controlling the COPD we are in a terrible kind of limbo.
I sometimes find myself honestly wondering where I am finding the strength to handle all this without completely snapping. I know there are moments when I feel so very close to doing that. Yes, I have those moments. I wouldn't be human if I didn't have them. That's what I remind myself when those moments happen. I don't beat myself up for having those moments. Instead I do whatever it takes to get through them, with as much grace, dignity and courage as possible. I cling to those 3 words with the tenacity of a drowning woman clutching a floating log in a raging river.
Tomorrow is the last chemo treatment for this month. Then it is a week off, and at least two more months of chemo. We are both hoping that when the weather warms up and he get back outside to do some walking he can build his strength back up, and get through the last couple of months of chemo with no more bouts of pneumonia, or days like yesterday. Humid days will of course continue to be a problem. But, perhaps not as big a problem if we can just get some sunny warm days in between where he can get outside and build his lungs back up with some walking.
Now it's getting time to get my butt up and face the day again. Get him to the clinic for bloodwork, and do the other things I need to. To anyone reading these words who is going through the same thing I am, just remember this, do all you can, but also remember, there is only so much you can do. You are only human, but bend like a windblown tree so that you don't break. Do whatever it takes to get you through it, and most importantly, do not beat yourself up, or judge yourself too harshly for only being human.
Getting and keeping priorities straight is another thing this journey is forcing us to do. Both as a team, and as individuals. My biggest priority is making sure I don't crack under the constant pressure. Sometimes this means doing whatever I have to in order to relieve some of that pressure. I have learned to toss guilt out the window when it comes to this issue because I know just how important it is that I do remain strong. And yeah, sometimes just knowing how important that is, increases what is already a very load. Who will help take care of him, drive him to chemo and the doctors, do all the other things if I crack? If I really stop and think very much about the responsibility resting on my shoulders, it's enough to scare the hell out of me! Which is why I never give that any more than a fleeting thought. Instead I just focus on making sure I don't crack under the strain
At this moment in time and space we are winning the battle. Mr. Grinch's tumor has already shrunk dramatically, and his tumor markers are very low now compared to what they were. Yeah, the relentless Chemo Regime is starting to leave him rather tired afterwards. Thursdays he mostly spends resting now. Doing only a few of the easier exercises that don't tax him too much. There is no terrible nausea though at this point. And so far, because of the steroids he is on, his appetite is damn good!
We have at least two more months of chemo to go. Perhaps the tumor in his lung will be completely gone by then. Perhaps it will take a few more rounds of chemo for that. Whatever happens the road to recovery is still a long one, with lots of bumps, rocks and really hard going along the way. But I know that we can make it to the end of that road. I know that when the going gets tough I will reach deep down inside myself, and find the strength and courage to make it. Just as I have done in the past.
A Terror Train
This cancer journey is a wicked stressful ride at times. The words Terror Train springs to mind sometimes when I think about it. Terror is felt so often lately, it almost seems like an old friend at. Terror of him getting pneumonia again, terror of him falling, of test results, of possible medication and chemo side effects, and most of all for me, pure terror I'm not going to hold up and do what needs to be done. There are so many things to strike terror into the heart of the cancer patient, and of the caregiver. And of course that which strikes terror into the heart of the cancer patient, deals just as harsh a blow to a loving caregiver as well.
To keep functioning, the terror has to be contained. It cannot be allowed to grow into a panic attack that renders me useless. A few deep breaths and silent pep talk often do the trick. Some of that terror is relentless, like the fear that stems from not knowing what is going to happen, and will I be able to handle whatever happens? That fear is a constant companion that can become overwhelming at times. Dealing with it takes more than deep breaths and pep talks at times. Which is why sometimes it is necessary for me to take a walk, or do something else that at least for a few precious moments allows me to, if not forget the terror completely, at least push it back enough to contain it, then get the hell on with what I have to do.
That's why things like the rail leading up to the main bathroom, and the little deck and gradual steps leading up to it are so meaningful to those in our situation. Meaningful not just to Mr. Grinch because they help him so much, but meaningful to me as well because that is one less fear I have to deal with. Anything, no matter how small it may be, that can ease some of the constant stress and worry is a very real blessing.
To others in the same situation I am in, I have these words of wisdom for you. Do whatever it takes to contain the terror and maintain your sanity. If that means stepping away for a moment and taking a few deep breaths while you give yourself a pep talk, do it. If it means taking a walk, a hike, a run, a ride, then do it. Chase the guilt away, take the break you need, and get the fear and stress that accompanies us every step of this terrifying journey under control. Do it for yourself, and for the one who are looking after. Should the ghosts of guilt try to haunt you remember this, if you snap and fall to pieces, what will happen to the one who depends on you? And yes, that's a damn stressful and terrifying thought in and of itself. But oddly enough, it is often the one thought that keeps me together. Knowing the answer to that question is what inspires me to do what I need to in order to make sure that doesn't happen.
I have been a bit negligent lately about doing journal updates. But had to make this one to say how very blessed we are to have the wonderful friends we do here. Our friends Brian and John put in a handrail leading up to the main bathroom to make it easier for Mr. Grinch to get up the steps, as well as building us a lovely little deck with steps gradually leading down from it that will make getting in and out of the RV so much easier for him as well. It is more like a little balcony as far as size goes, but we both love it!. It does have room for a couple of chairs, and is so handy to put groceries and stuff on when I'm unloading them.
This Cancer Journey teaches me to be thankful for every little blessing that comes our way. Including things like handrails and decks with gradual steps. These two things may not seem much to some. But, for Mr. Grinch they are the difference between easily and safely making it to and fro from where he needs to be, and not. Having them and knowing how much they do help him is a load off my mind.
Though his breathing has improved, these last two bouts of pneumonia have left him very weak. Fortunately he can go about building himself back up again much more safely and easily. We even use the little deck and steps as part of our PT routine on days the weather is nice. Today he walked around the 8ft balcony, then down the steps. After enjoying sitting in the sunshine for a little while, he walked back up the steps and into the RV.
Which again, seems like nothing to many, but is a major improvement right now for him. Keeping the right perspective is another thing this Cancer Journey teaches one very quickly. Right now our perspective is that of two people on one hell of roller coaster ride that makes us very aware of just how valuable some of the littlest things in life truly are.
Knowing he will no longer have to struggle with the steep steps that did lead into our home is very big blessing to me.
I didn't rest on my laurels, or my butt for that matter when I got home. I gave the inside of SweetPea another thorough cleaning, including steaming all the carpets in her. Even with the new cabin air filter, on really hot days, she still has a little musty wet dog bad breath so to speak, when I first fire her up. After a few seconds the odor vanishes completely. But, that's okay, eventually that odor will finally get worked out. Right now, it is mostly in the vents. And, because SweetPea's previous owners had at least one dog, I am still vacuuming up dog hair every time I clean her. But, that's okay, in time, I will finally get all the dog hair out. The important thing is SweetPea is everything I need and want in a nice set of wheels for me.
As you may have noticed, "But, that's okay" has become a way of life for me recently. Things that would have driven me nuts in the past, are okay now. That is partly because I am too often overwhelmed and exhausted from all the bigger problems, to get bent out of shape over the small stuff. And partly because I know that most of the smaller things will work themselves out.
What is really important is that this afternoon as I was taking a break while cleaning SweetPea, Dr. Beeram's office called to inform me they had received the authorization for his chemo treatments. This is wonderful news for us because it means as soon as he is deemed in good enough shape to come home, he can begin the chemo treatments that will help him battle the cancer.
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I am so loving my Subaru Forrester I bought from Boerne Dodge Chrysler Jeep. She is a zippy little darling who handles wonderfully on the road, and is a dream to park! I had a little trouble getting used to her at first. Like the first time I started her and went to put her into gear I grabbed what is on her, the windshield wiper arm. I haven't driven a vehicle with the shifter on the floor in a LONG time. It took me a few minutes to figure out how to turn off all the windshield wipers I had turned on, but I finally got even the back windshield wipers off. Then I went to gas up. I couldn't get that darn door to the gas tank filler open no matter how many ways I pressed on it. Finally I gave up and went to visit Mr. Grinch. I told him what happened, and he said, "Look for a switch or lever inside somewhere." I went one better, and went and got the owner's manual while he was having his shower. He was right, there is a lever by the side of the driver's door I have to pull to open that door.