The Cancer Observer

I know that I owe everyone a post, but the depths of grief our family has experienced during the these last few days makes it hard to do just about anything.

Mom has her moments of clarity, but for the most part, she is more and more confused every day. It becomes increasingly difficult to see her like this, as never in my life have I seen her so weak, so unable to do exactly what she wants, exactly when she wants it. I know this is the cancer asserting itself, but I’m sick and tired of what this disease is doing to her. I hold her swollen hands and tell her it is okay and it will all be alright, when I know it will not. I smoothe her hair and touch her face and move everything everywhere she asks it to be moved, but I know in reality things are not okay.

Kris and Magaly have been in town for more than a week now which has been such a help – and Uncle George stayed with Mom Sunday night, while Aunt Nancy and Uncle David were there last night. Aunt Tina, Uncle Mark and cousin Wendy all made the trip up Sunday too, which Mom really enjoyed.

Today I find comfort in the small things. Mom had some time when she wasn’t making a lot of sense, but then she had visits from Vicki and Jay from CSU and she really seemed to perk up, along with her time with Nancy and David. She also spent some time with my friend Melissa who is a kinesiologist (sp?) and a massage therapist and seemed to get a little relief and relaxation from that visit. She also talked to a priest which I think was helpful for her – he said she will find peace when it is her time. I can’t say I know what that means, but I do want her to find peace from her pain and her agitation that is coming from the disease.

I want to thank all of you who responded to Vida’s request to help with Mom. I believe her time is very short now and I encourage everyone who wants to try and see Mom to do it soon. I do need some help tonight overnight, as I’ve caught a cold and have had some back issues so I don’t do well overnight at the hospital. Kris and Dad are both there now and I’m on my way, as I’ve taken a leave from work to spend more time with Mom. I felt that it was time… and I think Mom needs the support more than ever.

Please continue to send your prayers for Mom and our family. Please ask for her peace, as she is suffering so much right now. I will be in touch. (Below, comic relief for a sad post – Karen’s dogs (Riley in the background watching the world).

Thank you all for the lovely flowers you’ve sent…. I had no idea how many of you were thinking about us and caring about us right now. It is lovely to see this outpouring of support. Right now it doesn’t appear that we have a single inch more of space to hold your offerings. Feel free to send her cards or greetings at South Pointe, but hold off on more for now, as we are supplying the entire hospice unit!  

Kris and Magaly safely arrived and Dad and I have been so happy and blessed by their visit – it really is awesome to have them here. We’ve all spent some great time together and are keeping a close eye on Mom and getting to know the wonderful folks at South Pointe Hospice who keep up us to date on everything happening with Mom.

The nurses and doctors are still trying to get the right types and doses of medicine, but for now, Mom sleeps a lot and is less restless than she was a week ago, but we are going on 9 days in the unit now and it really is sinking in for all of us what is going on. Mom actually has been getting up and sitting on the side of the bed a couple of times today, but she still has very little strength and is frustrated with how limited her movement is. Her speech is still difficult and swallowing is tough as well, so I’m hoping we can get these things in order along with the medicines, to make her more comfortable.

I dragged Magaly to yoga tonight – it was a wonderful relaxing class - and then followed that up with a visit to Coldstone Creamery. We had a great time and I’ve continued to take joy in the small things, as my only other option is being depressed all the time. I’ll take the positive, and treasure my moments with Mom, Dad, Kris and Magaly.

The last couple of days have been rough, as the doctors, nurses and nurse’s aides are trying to get Mom comfortable – as are Dad & I – but it is difficult to find the right combination of medicines to do it right.

We got a surprise visit from my Aunt Nancy (Mom’s oldest sister – in case you didn’t know, Mom is the oldest of 7 children!) and Uncle David. It was so very nice to see them, and for them to drive all the way in from Toledo to visit with Mom for just a few minutes.

The effects of the medicines are severe – extreme drowsiness, disorientation and confusion, not to mention yucky stuff like hard-core dry mouth and trouble swallowing.

Before I saw Nancy and David yesterday, I had spent a couple of hours with Mom where she was more alert than she had been in a couple of days. I was able to get her to eat some vanilla ice cream, which has is now her food of choice, replacing applesauce! I’m heading over to hospice now, as I hope to see that after nearly 18 hours on a less tranquilizing medicine (but one that is supposed to help her comfort and nausea), she will indeed feel good but be able to know more of where she is.

Kris and Magaly arrive late tonight and will be able to spend some good time with Mom during this week – so I’m going to do a lot of hard work this week in the hopes of getting ahead so when they head out again next week, I can maybe take a few hours a day off to get over to hospice.

I’m sorry for the short post today – but I’m rushed to try and get things done and am just really tired from this whole week. Thank you to those of you who have sent cards and flowers, they are much appreciated. Dad and I read the notes and cards to Mom when she is up and while she is having a lot of trouble, she still knows what is happening around her and smiles when she hears from friends and family.

We know that this disease is taking its toll. The doctors and nurses and nurses aides, along with Dad and I, are vigilant about everything when it comes to Mom. Together, we are doing our best to get her comfortable. We know she will be excited to see Kris and Magaly and while in the past she has declined all visitor requests, she may be changing her mind on that. Please know, if you’d like to visit, it may be short and she may not be who you would expect her to be. This is the hardest part. My strong, loving and wonderful role model, who is loved and respected by many, is no longer strong. But, as this disease does not and will not define her, she is and always will be loving and wonderful.

After my second visit to Mom today, I was able to walk to the Atma Center (yoga studio) and take an A/B class, which isn’t entirely beginning, but it is above the level I’ve progressed to recently. Earlier in the day, I was excited about taking a harder class labeled ’sressbusters yoga’ but didn’t make it in time. Can you imagine anyone who needs a stressbuster class more than I do?? However…

The class Martha taught tonight was in-cred-i-ble. If you didn’t get that e-motion, by spelling it out in additional syllables, it means it was really good! Our focus today was the abdomen, which is always a place that needs focus and in the process of getting my mind entirely focused on this mission, I forgot all about the craziness of the world I live in during this class. I was able to relax, focus on doing some great exercises and give my mind & soul a break from all of what is happening right now. As I’ve said before, if you haven’t tried yoga yet, you should – and if you have tried it but didn’t like it and live in the area, you need to check out Atma (www.atmacenter.com). It rocks!

On a totally different subject, just for some background about my blog: I have not and will not use our last name in this site, just to be safe. While it is public, I think it better to stick to first names. So, if you’ve sent me a note and haven’t seen it published, it contained a last name or I deemed it private just to me. Thank you though, for all of your thoughts and prayers, and all of your heart-felt notes. I appreciate it and I share them with Mom too, when we get a chance.

As I mentioned Mom’s new location at South Pointe Hospice. If you would like to send her something, you can send it to her at the hospital with her full name and this address: 20000 Harvard Ave. Warrensville Heights, OH 44128.

Well, I know you are wondering how Mom is doing today. I wish the news was better. She is very uncomfortable right now and on both of my visits she really didn’t want to talk at all – nor did she have the energy to do much of anything. She continues to grow weaker daily, but I feel like Nancy who was the nurse working today was taking great care of her. Dad also met the hospice doctor and he liked her a lot. By staying in this facility she will always have a nurse and nurses aide (I saw Lisa from last night coming back in when I was leaving tonight – and she is very kind; telling me that they will do anything to make Mom feel good) and the doctor is always a page away. At home, this most likely would not be happening. We have a few days to see how Mom does and then involve her in the decision if she’d like to get full-time care at home, or if it would be best for her to remain at South Point. Of course Dad and I will do everything we can to keep her as comfortable as possible, as that is our role right now.

Our family did get some good news yesterday: Kris and Magaly are coming home for a visit! I’m glad we can all be together in this difficult time – supporting each other, and most of all, being there as much as possible to show Mom just how much we do – and always will – love her.

While on Wednesday I felt peace that came from Dad and Mom signing up for in-home hospice, the bottom came out this weekend. Mom and Dad went through way too much starting on Friday and throughout the weekend and today, Monday.

To make a long story short, today Mom was released from Hillcrest (the main hospital we use for Mom) to the house but clearly was not ready to be on her own at home. In just five hours (after being taken from the hospital to the house via ambulance as she was in a fragile state), they sent her to South Point Hospice, a facility operated by the Cleveland Clinic.

Bev and Lisa are her two nurses tonight who admitted her and were wonderful and kind. Perhaps this was the place she was meant to be – to get care she needs right now. Even after worrying and being frustrated for her (and Dad) today, I felt better leaving her in this nice room with them than I have for many months of hospital visits. Mom was snoring loudly in a peaceful sleep when I left tonight, which was wonderful to hear. It has been rare that she sleeps that well and that she has a decent sleep at all due to the pain and anxiety caused by all of her current ailments, essentially brought on by the cancer invading her body.

Her latest issue which started the long weekend for Mom and Dad began with her PICC lines showing signs of blood clots in both of her arms. The doctors have been able to find a way to keep a line in so she can get fluids, etc., but the clots are still a concern and are being treated. I want to trust that everyone knows what they are doing as I know we are not doctors or nurses ourselves, but it frustrating to see her hurting and not enough communication!

I have faith and hope that ‘this too will pass’ and Mom will get excellent care at this hospice facility.

Thank you to all of you have showed concern and love for Mom, Dad and me; I will give you more updates when I have them. Mom’s wishes remain clear – no visitors. However, she does love flowers and if you want to send them, I will happily tell you the details of where they go. Because she can’t eat very much and still has little strength to do much of anything, the one thing that does make her happy is that when she is awake, she sees something beautiful in front of her. In so many ways we are alike, as I too love the sight of fresh flowers. They brighten the day, even when everything thing else seems so wrong.

Just when you think you have it all figured out, you figure out that you have to maintain your strength and take care of yourself, because we still have a long road to travel.

As is the way of my world these days, happy events and items are constantly juxtaposed with those that are sad and difficult to handle.

Every morning Riley and I head out into the backyard and about every three days, Riley chooses to pee on a beautiful bush of red raspberries instead of relieving himself on any other tree or bush out there. This is pretty darn silly if you ask me. I love those raspberries! I have since warned the neighbors that if anyone eats them, to make sure that they wash the ones from the lower branches (and have noted this for myself as well).

You might wonder why I’m writing about these berries that are both tasty and have been abused by Riley’s habit of marking his territory. It is because in this mixed world of the happy and sad I’m currently experiencing, a small beauty like a natural wonder growing without any work on my part, something that provides me something sweet every day without my request is a valued treasure. It reminds me of the days that Dad and Mom would allow Kris and I to wander off together and pick blackberries all around the old green house in Gates Mills. We would eat half of what we were supposed to gather – and the rest would be used for our cereal the next morning. Except for the occasional bug that slipped into the mix, picking and eating fresh berries seems like a simple and beautiful memory and this bush growing in my backyard is symbolic to me of the happiness that I do have in my life.

As I sit at home tonight with the windows open and a cool breeze drifting through I’m unfortunately unable to shut out the sadness that has enveloped the life of my Dad, brother and I – and so many others who have supported Mom’s fight with cancer. This weekend was a turning point in a way for our family.

Mom decided that it was time for us to talk about hospice and what our options were to make her comfortable and she and Dad today made the decision to bring in hospice at their home, provided by the Cleveland Clinic. The nurse who came to talk to Mom and Dad today will be the nurse who comes to the house twice a week to work with Mom on pain management and on her comfort levels. In this case, eventually hospice will also provide a hospital bed in the house, along with several other items that will make it easier on Mom as her disease progresses. She will also have the help of a nurse’s aide for an hour a day, five days a week. Eventually if Mom needs more help, we’ll also hire some additional medical professionals.

Mom has also made it clear that she will not have any more chemo and really who would want to? She is already weak and feeling awful, why would she want put her through anything more? While I never expected to be in a situation like this, it feels better to know that Mom is taking as much control of the situation as she can and I think both Dad & Mom feel good about signing up for this hospice program.

Mom and I and then Dad and I talked about all of this during last weekend, but I believe the final breaking point was having to watch Mom have her arm with the pic line swell up to three times the size of her other arm and having to wait until Monday to get it taken care of. Dad took her to the hospital Monday and they removed that lne and put in one on the right side, but clearly putting in a new line is a painful and tiring experience for Mom. Nothing is more painful than seeing someone you love hurting physically and mentally and knowing that the cancer is taking over. Without question, Mom is the strongest person I’ve ever known and this dreaded disease is taking away anything that is left of her will to fight.

Our melancholy is continually tinged with joyousness, though. Dad, Mom and I are closer than ever and are in this together. We are a team backed up by wonderful families and friends (see pictures of Pam, Debbie and Jules – along with my three newly graduated cousins)! While sometimes I feel despondent and hopeless, other days I embrace the summer in Cleveland and our other sources of happiness. I’ve been waiting for the summer so long that I’m okay with it being really hot and sticky, but am also learning to take what I can get around here. At least it isn’t snowing!

I’m counting my blessings that Mom now is enrolled in hospice and feels that staying at home with the care of these professionals will work for her as her illness progresses. As our family and friends – and all of those who love and admire my Mom as a colleague, professional and all around wonderful giving person will need to come to peace with this situation – as will I – I am focusing on small victories.

Today I am always thankful for my family and friends and the beautiful love and support they provide.

I also am blessed with these cool breezes easing me to sleep in my beautiful hometown – and have to appreciate Riley’s desire to continually water our favorite bush of blooming red raspberries.