Do’s and Dont’s

A Reason, a Season and a Lifetime

There is a saying that was shared with me about a year ago where someone told me that “people come into your lives for a reason, a season, or a lifetime”. It was interesting to me as I had never heard this before, and it was something I needed to hear in that moment. I was questioning my friendship with someone and sharing this information with a complete stranger; a nurse who was drawing my blood for my annual check-up, which by the way, I hate doing. Another story for another time…

I do not believe in coincidences. I do not believe that people come into our lives by chance, and this interesting piece of information was something that resonated with me in a huge way. I had never been able to rationalize my thinking of “no coincidences in life” and “the greater meaning of connections” and this person put the words out there plain as day. This particular nurse came into my life for that one, singular reason; to inform me of this interesting notion; people don’t come into our lives coincidentally. They are there for a “reason, a season or a lifetime”.

That was her reason. I will never see her again. But the impact she left with me last a lifetime.

On most days, we think we are connecting with people that we think are there for us. But I think most times we are actually meeting people we are supposed to impact. It can be hard to think of this the other way around, meaning; we actually connect with people we are supposed to impact, until it happens once or twice. I was at the airport last month and met these two women while having a beer waiting for my flight. We chatted and the one said to me, “I’m glad I missed my flight. Otherwise I wouldn’t have met you and I’m really glad I did”. The other woman offered to set me up with one of her single male friends in Seattle, to which my response was “no, thank you” ;-) But I digress…. I of course was having flight debacles galore this particular day, but perhaps this was the reason for my flight delays; to impact someone else in this case, these women.

There’s also another saying or theory that when you do through a major life change, be it loss or something else, you tend to find out who your real friends are – or are not. I like the idea of thinking that it’s more along the lines or a reason, a season or a lifetime. I’ve come to realize that everyone comes into your life for a reason – be it for your or for them. On most days I often think it’s for me, but I’ve gotten better at thinking maybe it’s for someone else. The woman at the airport, case in point; I impacted her that day. Doesn’t matter that I was having bad travel karma, the reason was I came into her life for a reason that day. That reason, I’ll never know. But it’s those connections that stay around for a while; those for a few days, weeks, months or even years sometimes. Those are our seasons. Until they become lifetimes.

Ed was my lifetime as are the kids. There is no question about that. And there is not further explanation or discussion that needs to take place. I know this. My kids know this, and anyone who knew us, or has read our blog knows this. Since his passing, I tend to see, and actually look for, the deeper meanings in the connections I make with people all of the time. And while often times the “reason, season, lifetime” can’t be seen right away, there are some connections that are clear as day, to me anyway. This is how it looks to me:

  • It’s a group of girls drinking Bloody Mary’s and Mimosas on a Saturday morning, or a different group of girls eating bar food and beers on a Friday night.
  • It’s a friendship that just ended for no apparent reason – the season just ended.
  • It’s a group of women who you have nothing in common with except you’ve all lost husbands. You just “get it” and that’s enough for a lifetime.
  • It’s a 21 year old young person that is seated next to you on a four hour flight that contains the most interesting and inspirational conversation. I know one day I’ll say “I remember her when…”
  • It’s dinner with an old friend where there is endless conversation and laughter and you can’t remember a word of what was said, just that it was great – and it makes you realize it’s time to think about moving forward.

My list is endless…

The reality is, everyone is a reason, most are seasons, and few are lifetimes. But I know who those are. Without question. I am lucky, grateful, privileged and honored to have them, as well as all of the “reasons and seasons” in my life. I learn from each and every one of them. Some just go deeper than others, and some just stand the test of time…and life.

I’ve had a lot of “reason” and “season” people come into my life; and I cherish the “lifetime” ones. They are all characters in my book of life. Some contain a brief sentence; some a page, others a chapter, and few are part of the entire story that is written each and every day.

Today, ask you to think about your “reasons”, “seasons” and “lifetimes”. We all have them. What do they look like to you?

Strength, courage, wisdom…faith, love, hope

It’s all I need to get me through each and every day.

Tracey

The Last Hail Mary…

I wanted to give everyone an update on Ed’s health, as he has had a major setback this week. I’m going to try to be very factual and just give the details of what has taken place since my last post. All I can start with is things are not good.

At last post, Ed had gone through an excruciating experience of a tumor rupturing in his spleen. We had decided that it was time for me to take time off from work to take more care of him as well as enjoy each day while we could do so. He returned to the drug therapy, Votrient, whose side effects were not that severe other than cause intense pain at the tumor sites. On Thursday, October 11, he started to experience horrible pains in his knees to the point he could barely walk. There was no explanation of this other than for me to think he must have tumors in his knees and the Votrient is causing them to flare up. We had hoped it would subside, as he went through pain in other tumors that did in fact go away. We already had a doctor’s appointment scheduled for the following Tuesday and decided if it didn’t go away, we’d address if at that time*.

Tuesday came, and by that time, I was pushing Ed in a wheelchair due to the knee pain. We spent the majority of the day at the clinic as they managed to squeeze us in for knee x-rays and a knee MRI to see what was going on. We finally headed home around 4:30PM, and about half way home, Ed expressed that his right arm felt like it was falling asleep. It seemed odd, but he figured he was just sitting in a way that caused it to feel like this. I asked if we should turn around and head back and he said no. We had a few stops to make, and we arrived home around 6PM. As he got out of the car, he noticed the right arm was having trouble with strength. Again I asked should we go back and he said no, let’s just get into bed and see what happens. By the time we got up the stairs, his entire arm had lost any strength or feeling, and he knew it was bad. His word were, “I’m not ready” and my response was “Of course not because it’s not time”. I called his doctor quickly who said get him to the ER now. We also called his radiology oncologist nurse, Sarah, as we knew this had something to do with the brain lesion that we have been keeping an eye on. All indications were that it was bleeding, which we had a hard time believing as we had just had an MRI to check on things less than a week prior.

So off we went back to UWMC. Sarah, the nurse, unexpectedly met us at the doors of the ER. She gave no indication on the phone that she was going to meet us there, but she did and good thing. I swear she whisked him off, parted the red sea of the ER chaos, and there were three doctors in his room immediately. I was off parking the car so I had no idea what happened but apparently, when you tell the ER that you are having “stroke like symptoms”, which truth be told, the symptoms he was showing was indicative of a stroke, get you attention and quickly. Once the doctors were in the room, she let them know what more than likely what the culprit was really was.

They quickly got a CT and when Ed came back to the room he said to me “it’s not good”. I asked how he knew this and he said that when the picture came up, everyone got quiet and stoic and all they said, “we need to compare this to your films from last week.” But he knew; there was a brain bleed from the tumor. And he was right. So what are we dealing with?

First, we were dealing with a brain bleed that needed to be controlled, with every few good options. The more the bleed continued, the more mobility would be eaten away. While the majority of the arm was gone, we needed to keep close watch because the leg would be next. Not being able to walk is something that is unfathomable to Ed. I think most of you know Ed well enough to know that not being able to take care of himself is the worst possible thing that could happen to him. Cancer might be eating away at his insides, but this issue with mobility is almost more than he can bear. And the two issues together – brain bleed and mobility (we can leave the entire cancer issue out of the equation) are sort of a vicious cycle; the bleed is causing the mobility issues, but fixing the bleed could make the mobility issues worse. Doing nothing guarantees the bleed will continue and make the mobility issues worse. So inpatient to the ICU he went where he was monitored hourly for any signs of neurological issues, meaning further mobility loss as well as CT scans every four hours to monitor the bleed hoping it would stop on its own.

As the night turned to day, it was clear the bleeding had not stopped. The CT scans showed the clot being slightly larger, all movement in his arm was gone, and he was starting to experience weakness in his right leg. None of which were good signs. We saw doctor after doctor as we had four teams of doctors (as I mentioned during the spleen update, as a cancer patient, you always have several teams on the case) all with residents, attendings, rounds, reports etc. As one team left, another came in and none of it mattered because the only opinion we were truly interested in was our radiation oncologist, Jason Rockhill. When we were in the ER, Ed made it abundantly clear that he was in charge (the doctor that has performed two gamma knife treatments to the brain) and no decisions would be made without the consult of Dr. Jason Rockhill. Everyone understood.

The doctors informed us that there were a few options, none good. All seemed to put us between a rock and a hard place. I won’t bore you with the details, but basically the three options were surgery to remove the clot, but probably would do nothing to improve mobility and more than likely make it worse; full brain radiation which was less invasive than surgery but not necessarily proven to stop bleeding in the brain (but has been very successful in lungs); or do nothing in which case the bleed would continue, mobility would be lost, but we could go home and set up home care to accommodate the deteriorating mobility issues, which would continue without any treatment whatsoever.

Emotionally we were both spent. Ed was done. Done with all of this shit. Done with cancer, done with what conventional treatments have done to him, as every treatment has made him worse than he was before we found out about the cancer (we do suspect the Votrient caused this bleed similar to our suspicions that it caused the spleen bleed). Frankly, each treatment has chipped a little bit away at his soul and this was the last chip. He wants to preserve what little he has left, and quality of life is incredibly important to him, and both of us. Jason Rockhill knows this, and has always been incredibly honest and straight forward with what we are facing. One of the reasons we wanted him to be the doctor in charge.

We had a very frank discussion with Dr. Rockhill about what kind of time we were looking at if we stopped treating the cancer outside of the brain bleed and mobility issue treatment decisions we were facing. Basically, how much time does Ed really have to live with this cancer? These details I will save as they are too harsh to repeat here and people are not statistics. From there we discussed the brain bleed treatment options in great detail to help us make an informed decision, and then Dr. Rockhill left us to discuss and decide. Ed and I spent the afternoon discussing options, crying, discussing what he wants with the time left, crying, contemplating the various options, crying. I think you get the picture.

Ultimately, we decided that doing something was better than doing nothing. We determined whole brain radiation would be the last “hail mary” as maintaining mobility was our number one priority right now, and this gave us the best chance, although it wasn’t guaranteed. We started that evening (it’s only Wednesday at this point if you are keeping up). The night was quiet. Neurology checks went from every hour to every four hours and CT scans were being done 8-12 hours apart.

Thursday and Friday tend to be a blur at this point, as all I can remember, things seemed to continually get worse. On Thursday, Ed almost fell due to his right leg losing strength while he was standing. Friday brought us to our first day of physical and occupationally therapy evaluations of which they proved he is not able to go home as it would not be a safe environment for him. We have stairs in our house, and even to use the powder room, you have to climb two stairs. His PT evaluation indicated he couldn’t do it today, but with intense therapy as in patient rehab, he’d get there, and in a decent amount of time. Just not today. (I will pause here and say I did feel a bit better about his mobility issues after the PT evaluation. Jason, his therapist, was very quick to say they rehab all kinds of patients including those that have suffered a stroke, brain injury, amputation and more. This gave me hope that he’ll be able to do this. He’s not the first, he won’t be the last). And the icing on the cake adding insult to injury was on Friday afternoon, Ed began experiencing seizures. The seizure episode was small, and not what you think of when you think of seizures. He head was just twitching a little and we really didn’t even know what had happened until it happened again. This is a very common side effect of radiation treatment. The reality is the brain is undergoing trauma. Between the treatment and the bleed, this is not a surprise actually, just a disappointment. I put a quick halt to further radiation treatment until we could talk to our doctor. Things just seemed to be deteriorating and going downhill from all different directions, but I had taken my eye off of the ball. The reality is the CT scan that afternoon indicated that the clot had not gotten any larger. We may have stopped the bleeding. Priority #1.

So here we are today. The anti-seizure meds suck. They make him very groggy and bring him even more depressed than he is already, which we don’t need. But he hasn’t had a seizure since he started the meds, and from what I understand, the meds will balance out in his system and he won’t feel like this once they level out. I have a wonderful friend the educated me on seizures a while back, and people live with seizures and they get them for all kinds of reasons. I hate the meds, I hate the seizures, but they should be temporary. He had a PT session today that beat every expectation of Jason, his therapist, which is great and encouraging. We accomplished some other things that I’ll leave out as it’s a little TMI for everyone, but let’s just say, to me, the day seemed better than the past two. I can only hope they continue to get better from here.

And where do we go from here? Right now, I can only take one day at a time. Literally. I know I have been saying this for months, but the truth of the matter is I was not living it literally until right now. Tomorrow we’ll have another PT session, and I hope it’s good. Our goal is to get Ed home. In order to do so, he needs to be able to function safely in our home. There is a lot more to this than just the stairs, but I will leave that out as it will be TMI. We also have to make sure the brain bleed has stopped. We’ll decide on Monday if we are going to continue with brain radiation or if two treatments were enough to stop it.

When checking in, many of your first questions (after how are you guys doing) is “has the feeling come back to Ed’s arm” or “is he going home soon”. The mobility issue is not something that will reverse itself. The feeling in his arm will more than likely not come back, and rehab will help his leg to function “normally” but it will never be 100%. I don’t know how long any of this will take, but I know it will take as long as we need it to and not one day sooner. My husband’s health and well-being is my number one priority right now.

And now you are up to date. I’ve been in contact with many people via IM and text messages this past week (technology being used for the power of good). Thank you so much for your thoughtfulness, prayers and love. It has been incredibly helpful for me to know that you are all there, albeit so many of you are many miles away. We are heading into rough territory here and we both know it. I have never been more dedicated to the wedding vows I took 13 years ago then I am right now. We are a team. We are Team Blackburn.

Strength, Courage, Wisdom – Faith, Love, Hope

Tracey

Living with Cancer

Living with Cancer
I think there are a lot of myths and confusion surrounding communication with someone who has been diagnosed with some form of cancer. I can tell you my story and hopefully, in the future you can apply some of these thoughts and suggestions on how to communicate with a loved one who has been diagnosed with such a horrible disease.
Myth: Someone who has been diagnosed does not want to talk about the disease. Now, to some degree, there is a lot of truth in this statement. Someone who has been recently diagnosed will be so overwhelmed with the idea it will be hard to discuss. From that day forward, your entire life, each day, every moment will be surrounded by your diagnosis. For the first few weeks, you will go through “the stages of grief”. This will be overwhelming and difficult but eventually, you will regain your composure and “need” to talk to someone. This is where I believe the myth of not wanting to talk about this, comes into play. I was told by a really close friend that I should keep a blog about my life with cancer. It would serve two purposes, one it would give me an outlet to express my thoughts and feelings with the ability to reflect on this later in life. Two, it would allow me to keep family and friends up to date on the progress without having to make many phone calls sometimes daily if not weekly. Now, I will have to admit, this has been a god send for us. As stated before, living with cancer is all encompassing. There is very little time in any given day that you are NOT thinking about life with cancer. The blog has given us the ability to express our thoughts as well as keeping our family and friends up to date without making phone calls has been great. The downside of this is we don’t get the phone calls. Our family and friends assume you don’t want to talk about this disease so they are afraid to call. I think this is typical with all people who have been diagnosed, family and friends just don’t know what to say or how to talk about cancer, so they just avoid calling. I have personal experience with both ends of the spectrum concerning this subject. A close friend of mine starting calling me about once a week, at first I was unable to answer the phone, just wasn’t ready to talk. The second week, he called again, this time I answered and apologized for not returning his call earlier. He responded by telling me, “you’re a friend and I am concerned about you, I will call every week and check in on you, when you’re ready to talk, you will answer the phone if not, you will call me back when you are ready. I won’t stop calling, eventually you will answer the phone and we will talk”. This was amazing and a sign of a true friend. The second call was from a family member, after about two months of not hearing from them, I called. When he answered, he immediately apologized for not calling and stated “I was afraid you would not want to talk”. This is the response more often than not. In fact, I have only one friend and one family member take the first approach. Bravo to them. Don’t be a coward, pick up the phone and call, if we want to talk, we will answer the phone, if not we will call you back later. If we don’t, it does not mean we don’t want to talk, it just means our life is surrounded by this disease daily and when we get a break, it’s the last thing we want to think about during that time. Call us back, let us know you care, you’re thinking about us, when we are ready to talk, we will answer the phone.
Dos and Don’ts. There are thousands of different forms a cancer, and usually hundreds of sub forms of a given cancer. Sarcoma Cancer is diagnosed less than 1% of any other known cancer diagnosis. Synovial Sarcoma is less than 8% of all Sarcoma’s diagnosed. That means Synovial Sarcoma is roughly 1 in every 80,000 people diagnosed with cancer will be diagnosed with Synovial Sarcoma but Synovial Sarcomas account for 2% of all deaths by cancer. Though it’s pretty rare, the death rate is high. Synovial Sarcoma is unlike most other cancers, its aggressive, its resistant it’s deadly and there is NO known cure at this time. Because Synovial Sarcoma is so rare, funding for research is also hard to come by, therefore it’s not on the top list of cancers to cure. The worst statistic about Synovial Sarcomas is that they typically attack people under the age of 20. It’s a nasty disease that attacks our children. So, trying to rid the body of Synovial Sarcoma has to be done very aggressively and done by trial and error. There is NO proven process or procedures that work on Sarcomas, let alone Synovial Sarcomas. The success rate is less than 40% of all sarcomas. I am telling you this because you need to know, this is typically nothing like you or your family members have ever experienced or will have to experience.
Which brings me to the dos and don’ts? I have had so many people come up to me and say “I know what you’re going through my _______ had cancer”. Or “My _______ had cancer and he/she had to have 30 rounds of chemotherapy and he/she survived, you will too” or “My _______ was diagnosed with _______ cancer, 15 years ago and is still around today, you will too”. Now, we all know your trying to relate to what is going on and this is your way of trying to understand. I recommend that you do not try and compare what one person is going through with another. Cancer varies by diagnosis, treatment, rarity and mortality. Every diagnosis is treated individually with different forms, chemicals, radiation and durations. To compare two totally different types of cancers as one is frustrating. So, if you want to provide some level of understanding of what one person goes through by personal experience, just tell them “I am sorry to hear about your diagnosis, cancer is a horrible disease our family was touched by cancer so I have some level of understanding of what you’re going through” or something similar. Please don’t compare. Just agree it’s horrible and no one should have to experience this disease. If you personally, have been diagnosed with Cancer, feel free to share your story, we love to hear about success!
Do; offer to help if you can. Don’t get disgruntled if we don’t call upon you for help. Most of the time, we don’t know what “help” looks like. Sometimes a home cooked meal is great but sometimes being able to eat a home cooked meal is difficult. Rides, to and from Drs. Appointments could be a great help at times but not something we would need often. Just knowing you are willing, makes it simpler to plan our days. While going through chemotherapy, our bodies are beaten and chemically burned out. Our immune system is pretty much nonexistent so something as simple as a cold could have an adverse reaction to our health. Heavy lifting, cleaning gutters, raking leaves, mowing the yard, trimming bushes are fun most of the time but during chemotherapy are nearly impossible tasks. A simple cut could easily get infected and cause delay in treatments. A broken finger, arm or leg from a simple fall could have almost deadly effects. This would delay all chemotherapy treatments until your body has healed, this gives your cancer time to grow and spread. So, sometimes help is something as simple as the above. We had a neighbor come by and clean out our gutters this fall; this was such a relief and greatly appreciated. We had another friend offer to come by and put up Christmas lights for us this year. Another brought over food that lasted nearly a week. These are all great and helpful. Thanks!!
Don’t expect us to travel to come see you. Chemotherapy pretty much does not allow you to travel, your immune system is compromised and a simple plane ride to an adjoining city could have deadly consequences. Don’t expect us to ask you to come for a visit, timing is everything right now and with treatment, we have no idea what the next day will bring. Do plan a visit on your own; don’t wait until it’s too late. Just let us know when you are coming and let us help figure out when would be the best time.
Don’t treat us as if we are diseased and week. We are your family, your friends we are normal just living with a horrible disease. We may not be able to have a beer as often as we would like but on occasion a good beer and burger is worth its weight in gold.
Do understand that our every waking moment of our life right now is all about cancer. We are professionals on the subject, we have researched all the data, been treated with the worst chemicals, our bodies have been brought to near exhausting making it even difficult to even take a step. We are warriors, we are survivors and we know what we need to do to get through the day, every day. Sometimes, we just need an outlet, something stupid, something simple, and something humorous so we can just forget about the disease, even if it’s just for a moment.
Don’t feel every conversation needs to start with “how are you doing?” My common response will almost always be “I have had better days” or “today is a good day”. Our lives right now are measured in moments and days. We have our good days and bad days. Every day starts off the same but seldom do they ever end the same. When you ask how we are doing, you risk triggering a mental break down or an out write lie. Understand, once again, we live with this disease and its part of our every waking moment. We just want to feel “normal” do “normal” things and have “normal” conversations. Once you start a conversation, you will get a pretty good feeling how we are doing that day and you can judge your conversation based upon that moment. If you do not know, it’s ok to ask. Just don’t make it the first thing you ask when you see us or call.
Occasionally, during a conversation we may get a little choked up when talking about current events. Sometimes, we just need an outlet to cry or get angry. It’s not your fault! It’s the disease. It’s hard keeping it together all the time and we do get weak once in a while. Its ok just let us go through the motions, give us a hug and tell us it’s going to be ok.
We understand our diagnoses can be hard on you as well. We understand that you want to help, cry and get mad at the world just as we do. Remember, we don’t know what help looks like most of the time. Do what you need to do to help yourself help us. If that means doing research on cures, finding nutritional information, making donations or just a prayer. Do it. We could use all the help we can get, others with Cancer could use all the help they can get as well. Who knows, what you find or a donation you make could make the difference between survival and mortality.
Lastly, understand we have bad days. Sometimes more often than we would like. These days make it very hard to socialize and be normal. We just need space and time to adjust to the day. Don’t take it personal if we don’t answer the phone, respond to email or text message, get cranky on the phone or even walk away in the middle of a conversation. Sometimes, this disease is all encompassing and it takes over our will and motivation. These are bad days, they don’t last forever. We have learned to adjust to this lifestyle. Give us a day or so and we will get back to a normal state.
Life with cancer is challenging, it changes everything you know and feel about life. It’s hard to plan anything, even something as simple as dinner. Travel is out of the question most of the time, so when we have a spare weekend and my health is good we may just go somewhere on the spur of the moment. Have to take advantage of those times when we can. Planning for the future is pretty much not possible most of the time. You would be surprised how spending money is no longer enjoyable. You would think it would be just the opposite at times but at this time, I don’t even think about buying something that only I can use.
Living with Cancer is hell, please understand we just want to be normal and live a normal life. Pray for us but don’t treat us any differently then you did before you found out we have cancer. Ask us to dinner, to a gathering of mutual friends or barbeque or just to have a beer. These things makes every day just a little bit easier to handle.

Thanks for reading and understanding.

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