Two More to Forty!

Well, today is March the 12th and it is another day that will live in infamy. It was 38 years ago today that the stork decided to drop that special little package, earmarked for Ida Longo, on the front door step.

Now, I had a relatively quiet birthday today. I hate to celebrate on a weeknight, so we'll have a few "birthdatinis" this Friday. I had a singing phone message from my brother, Andy. I had friends call and email me their smartass comments about turning another year older and how I had two more years until forty ... and then I got “the look” from mom.

I had already planned on being with mom and pop today since we had scheduled to have her drainage tube removed last week. And to tell you the truth, I had forgotten that it was my birthday with all the hospital chaos. I arrived at Casa de Longo around 11:15 this morning and mom was wielding a birthday card in her hand with such excitement I had to duck before she cut my jugular!

We ran through our pre-flight checklist – cane, insurance cards, doctor’s phone numbers, list of questions and her handi sticker for parking. Once we knew we had everything, we loaded up and headed out. We had to go back to the hospital that mom didn’t particular care for during her recent stay. Since they put the tube in, they were the ones who had to take it out. We got her all signed in and waited for her name to be called.

Here is where I first noticed, “the look.” I looked over and caught mom starring at me. Maybe it was because it was my birthday and she was probably taking a little walk down her maternal memory lane, but her eyes started to tear up – there is a lot of love and gratitude in those peepers. I leaned over and asked why she was crying and she said no particular reason – LIAR! I know what she’s thinking!

She proceeded to tell me that when I opened my birthday card, that there was a yellow note that I had to read separately. Of course I asked, “Am I going to need Kleenex”? And she just shook her head in affirmation. Have I mentioned that I hate it when she makes me cry? But she proceeded to tell me that if she didn’t tell me, then I would not know what is in her heart. I told her that she was mistaken. I can tell by “the look” what is in her heart – there are no words written or spoken that can compete with “the look.” I get it momma and I understand – the feeling is mutual.

As we proceeded to wait for the calling of her name, she closed her eyes a bit to rest. I told her that hopefully we would not have to wait too much longer to check in. To which mom replied, “I have spent the past seven months checking in.” I looked at her and said it beats the alternative, “checking out.” She started to laugh and mentioned something about “always knowing what to say.” Yep, that’s one of my many job functions that I embrace – CEO of Smartass Retorts! :o)

Her medical pager finally went off and we were ushered back to the CT room were they would remove the drainage tube. We got momisan all settled in on that little bed that passes through the giant donut and then proceeded to the hall way to wait. As pop paced up and down, I saw a gentleman in a white coat cross the hall and say, “Ida Longo.”

I have mentioned before that mom had “chemo brain.” I on the other hand have developed a super sensitivity to those words, “Ida Longo.” I am always eavesdropping on the other side of the door to make sure that they are taking good care of momisan. Now, because I am not bashful, I poked my head into the door and asked the doctor if everything was okay. He said, “Yes” but they could not remove the tube because it was still draining. I informed him that momisan was a cancer patient who had undergone a lymphectomy and regardless of whether the tube was left in or removed, it was still going to drain some. He looked rather irritated that I had questioned his white coat authority, so I told him to call her oncologist for further direction. Why is it some doctors hate to be questioned?

After fifteen minutes, mom emerged from the CT room a bit shaken and with some pain. Dr. “Personality” explained that he went ahead and removed the tube after speaking to her oncologist and gave us a brief synopsis of what to watch for and he disappeared down the long, white hallway. The thing with Cancer patients, especially those that have undergone surgery, chemo and radiation is that their bodies react a bit differently to treatment. So while mom’s continuing drainage might be an issue for a surgeon, for an oncologist it is a common occurrence. So my advice for anyone supporting a Cancer patient is ask those questions regardless of how irritated the “little white coats” become, especially if you are using an unfamiliar physician.

We had a technician wheel mom to the parking garage and everyone piled in for the ride home. Mom got comfy and I ran out to get a cheese pizza for lunch. We ended the day on a high note – me, mom and pop sitting on the porch, eating a slice al fresco.

As my birthday nears its conclusion, I was contemplating what I would wish for. Thirty years ago it was a pony, Babies and one of those Easy Bake ovens. During the past few years, I realize that I no longer wish or really want for anything tangible. I guess that is a sign of maturity when you realize that your house is in order and you don’t really want for anything – life is SUPERB!

One would think that there are not too many things on my eighty year old mother’s “must see” list. She has done a lot and seen so much more. I remember on my thirtieth birthday, before I had met my husband, I would sometimes wonder if mom would see me married…I know she thought the same thing too! Thankfully, we crossed that off the list three years ago. Now I would be lying if I said I did not think about her being around for at least one grandchild on the Conley side of the tree – that would just put her over the edge of uncontrollable euphoria. And yes, I know at 38, my window of opportunity is closing! I can’t help it if it took James so long to get here.

So that is my birthday wish tonight, God…as selfish as I know it sounds. Please let my mom enjoy many mores years on this earth to witness the birth of another grandchild. That is the greatest gift I could ever receive, to see my mom hold my baby like she held me thirty-eight years ago, today.

Val

(Looking a little tired today, but holy cannoli...look at that hair growing in. The texture has changed and it's a very nice "salt and pepper" mixture.)

ChemoSabe Rides Again!

"A fiery horse with the speed of light, a cloud of dust, and a hearty Hi-Ho, Cancer…Away! Return with us now to those thrilling treatments of yesteryear. ChemoSabe rides again!"

Okay, so perhaps I “adjusted” the original Lone Ranger intro to suite my needs, but what do you expect…after all, these are the ChemoSabe Chronicles. ;o)

Today I arrived at Casa de Longo to take mom to her oncologist. I figured pop could use a little break and Mom and I were well overdue for a lunch date…even though she sees me, Andy and pop everyday, sometimes it’s good just to get out and mingle with non-Longos. :o)

We arrived at the Dream Team’s office only to be greeted like the prodigal son. There were hugs and kisses and numerous conversations to bring everyone up to speed on what has been going on since her last radiation. What should have been our follow-up visit after completing radiation was more of a shortened version of the classic board game Clue as we tried to figure out why momisan was draining fluid. It was nodes, in the Pelvic Room with Lymph Fluid!

It turns out that my super sleuthing was correct. Mom does indeed have a condition called lymphocele. Since her surgery required that the lymph nodes be removed from the pelvis, there is really no place for that fluid to go. It should be absorbed by the body, but due to the radiation, it may have temporarily impeded the body from doing that. Which in turn caused the pelvic mass of fluid – it was like a lymph system traffic jam.

Her oncologist said that as long as the drainage tube was in, the fluid would continue to drain. But if we remove the drainage tube, the body may now have the ability to absorb the fluid and the only way to tell was to remove the drain and then watch her carefully for any signs of swelling. The condition may or may not be re-occurring, but we won’t know for a few months.

Before we could schedule a time for momisan to have the tube removed, her oncologist wanted to confer with the infectious disease doctor one last time. He would not give a directive for removal until he knew that there was no sigh of sepsis, infection or any other bacteria in the fluid or in her blood. If the lymph fluid was just that, clear lymphatic fluid, then we could take the tube out with no worries. I am happy to report that her oncologist confirmed that everything is good and we have scheduled the procedure for Monday afternoon. The interventional radiologist should have her in and out by dinner time as it is a relatively simple and quick procedure.

As far as her Cancer treatment goes, she will indeed have to have another round of chemo. But right now, her body needs time to heel from battling this infection. Even her oncologist said she looks a little tired so the best thing to do was to post-pone the final round of chemo for thirty days. I am sure mom was a little disappointed that she had to have another round, but she knows that she has come too far to turn back now.

Someone once asked me how someone her age, can fight so hard…and the answer is simple. She does it for me. She does it for Andy. During her most recent hospital stay, she told me that she often prays to God to get her through another day because of all the time and love that we have invested in her. It’s not that we didn’t do it before she got sick, but for those of you who have traveled down this same path, you know that your love and devotion is magnified to a much higher level – a level that you didn’t think existed. That’s why she fights. In her mind she feels that she owes it to us. She fights to see her granddaughters play softball or to come over for Nan and Pop day. She fights in the hopes to see another grandchild soon. Now, I don’t say that to imply that we are expecting anything in return or feel that mom owes us something, or to portray us as some horn tooting, Cancer martyrs; but for anyone who has ever been beside someone fighting Cancer, you know that they get from day to day by fighting for something or someone that they love – Mom fights for us and I think that is one hell of an honor.

I am sure I will be on pins and needles for the next thirty-days. Mom and I talked about having to post-pone her treatment and I think she was concerned that she might have to start it all over again. She also posed the question that by waiting; it might cause the Cancer to rear its ugly head again because we have not yet completed the entire treatment plan that was developed for her in the beginning. But her oncologist said that since we completed three rounds of chemo and 25 radiation treatments and her last CT scan was clean, that the odds are currently in our favor. Our biggest hurdle is mom’s age. You can’t pound an eighty year old woman with treatments because as strong as she is, her body needs a break. So please join us in saying a few extra prayers this month that the good Lord will keep her in a holding pattern and just allow her to rest and get stronger to face her final round.

We ended the day by grabbing a little lunch and as we were discussing the days events, we were soon surrounded by the cops…okay, just one…Andy. He stopped by to join our little lunch gang and once again, I sat back and pondered my world. My head was replaying something mom had said earlier in the day – “A lot of wonderful things have come out of this journey” and you know, she is right. As I have often said numerous times before, the things that we consider as a curse sometimes hold the greatest blessings. Today, I am a better daughter, wife, sister and human being. All of our relationships have changed. Some for the better and some...well, let's just move on. The most important thing is that majority have proven to each other that when times are tough, we will be there to comfort, inspire and love one another…that’s what family does.

I have often heard people say that we should live our life with no regrets. For some that means having more material things than living life by the “Golden Rule.” Some believe he/she with the most toys in the end wins. But the truth of the matter is that those who are always trying to simply do the right thing are the ones who truly understand that is the only way to live life with no regrets.

For the next thirty days, momisan will get some rest and her body will have time to recover. Who knows, maybe in a few weeks we will take her on a little road trip (close to home) just to add a little fun and adventure into the mix. As always we thank each of you for the phones calls, emails, personal visits, letters and cards – Casa de Longo is looking like a Hallmark annex but mom can feel the love and well wishes from each and every one of you.

Blessing to you all!

ChemoSabe

Our Boy is a Killer

I had a Wild Kingdom moment in my back yard yesterday. My husband, James and I have two beautiful puppy dogs. We thought we would see if we could keep them alive before we added kids to the mix. :o)

I am happy to say that “our boys” are healthy, loved and probably spoiled. One dog, Ryker is like a little sentry. He is always on guard and looks rather menacing with those pointy ears and perfect posture. Then there is Ruger. We call him our special needs dog because he hasn’t a care in the world and can entertain himself for hours with his squeaky tennis ball.

Well, before I headed over to Casa de Longo for my daily visit, I decided to let “the boys” out to frolic and take care of business. Within minutes, I was on the back porch trying to wedge my way in-between Ryker and a huge Grackle (one of those giant black birds)…let’s just say that the bird lost.

I was horrified that my seemingly loving four-legged furbaby was a killer in disguise. But as I later explained to mom, I could not be angry with him, because certain breeds of dogs are genetically imprinted to hunt – no matter how domesticated they get.

This afternoon, “the killer” and I were sitting on the back porch and I started to think how watching him stalk his prey was very similar to fighting cancer.

Even though cancer is sometimes not diagnosed immediately, somewhere along the line you see something or some event occurs that grabs your attention – much like the bird (hopping along) that peaked Ryker’s interest. Then, you find yourself playing the waiting game. While you may not hide in the tall grass like my dog, you do become much more vigilant and watchful to see exactly what you are dealing with. You are basically sizing up your opponent, much like my furbaby and his Grackle.

Now, once you know exactly what you are up against (size and grade of the tumor and any sign that it has metastasized) then you are ready to move in for the attack. Much like my puppy dog, you have two approaches fast and furious or slow and cautious. There are some cancer patients that have extremely aggressive treatments while others have a more delicate course of treatment. But either way, the end result for each is the same…to take Cancer down, fast and with some type of finality. Much like the Grackle, I would prefer that momisan’s Cancer stay down for the count and not show any signs of life once we are finished with her treatments.

As I continued to watch my “killer” sun himself on the porch, I was thankful for his ability to remind me, in his own furry little way, what an amazing attack team we have. Our treatment plan is aggressive and while we have had a few set backs, we have made significant progress in moving this Cancer into remission.

Last night, mom’s nurse came by to change the dressing on her drainage tube and she gave mom the once over and then asked her if she was sure she was eighty. Mom said, “Yes, indeed” and her nurse said that she is in remarkable health. I reminded mom that eighty is the new sixty! And that, my friends is what gets us through those long days. When her medical team reiterates what we already know – that she is strong, healthy and making great progress on her road to recovery. As a side note, don’t shake her hand, she has gotten freakishly strong since the chemo and she has developed a G.I. Kung-Foo Grip! :o)

Tomorrow is a new day and hopefully we will have an answer as to why there is still an excessive amount of lymph fluid draining from her body. We can’t more ahead until the cause of the drainage is found and a course of action is taken to stop it. So please continue to pray that her oncologist will be able to ease the drainage tomorrow so we can all pile back onto this Crazy Train and make out way to our final destination – remission.

Val

Here is the “Killer” innocently posing with his family. From left to right: Val, Ryker aka “Killer”, James and Ruger.

It’s not Personal…It’s Cancer

First of all, I have to give a shout out to mom and Team Loco. We achieved landmark status today…we have been Googlized! That’s correct, if you go to Google and type ChemoSabe into the search box, our little blog, The ChemosSabe Chronicles, appears on the first page of results. Mom is a superstar in cyberspace and that would explain some of the lovely and encouraging emails we have gotten from others in different states across the U.S. - people facing cancer that find some similarity and humor in our parallel universe.

My mind was pondering in the shower this morning (I do some of my best thinking there) on how we sometimes interpret things too personally. For instance, when I visited momisan yesterday, she said she had received a few phone calls asking why she didn’t call to let someone know she was sick or in the hospital. Sometimes when you are in the midst of flying IV tubing and trying to dodge a nurse on a mission, wielding a pointy needle…you just forget. As her child and part of Team Loco, I sometimes forget.

We try and keep everyone in the loop as best we can. We field phone calls, emails, blog and rely on others to spread the word because the truth of the matter is there are not enough hours in the day to make 30 or more separate phones calls to keep everyone up to speed. For those who have taken a similar journey, you will understand that there are days when you are taking care of someone and days when you are catching up on all those things you have put on hold to either be a caregiver or a supporter. Most people are extremely understanding. But if you have not gotten an update from me, pop or Andy, please do not be offended. It’s not Personal…It’s Cancer.

I am happy to report that yesterday I found momisan and pop sunning themselves on the back porch at Casa de Longo. I stayed for a short visit and mom told me that hey had enjoyed a backyard picnic with the latest grub dropped by the Food Fairy (bbq pot roast with some homemade coleslaw). Today is her follow-up with the radiologist that sutured in her drainage tube, so we are hoping for some good news on that front.

For those of you that read this blog, I am sure that you understand the reasons why we share it with you. It is not to impress you, but to inspire you. If we can help just one person or family facing cancer understand that they are not alone, then we have accomplished what we have set out to do. When you have moments of doubt, if you can recall the 80 year-old lady in Texas that is putting up one hell of a fight, and that gets you to another day in your journey, then we are happy to share our story. If you find laughter and joy in the midst of sorrow and fear, then giving you a glimpse into our silly side is worth it. When you feel alone, know that there is unity with those who walk the same path. When you find hope in the midst of defeat, then we are happy to share our progress as well as the set backs. And when you can find your blessings within the swirling waters of chaos, you will know why I consider this journey a privilege and priceless experience between me and my mom.

It is definitely not a journey for the faint of heart or the self-absorbed. You have to be an unsolicited “giver” if you expect to walk with a patient and be of any benefit to them. I for one am proud to be a card caring member of Team Loco!

Thank you all for your prayers, love and encouragement.

Val

Flying Food Fairies!

I have received a few emails asking if my mom’s infection has any correlation with her surgery to remove her tumor back in September. So I thought I would clarify incase someone else is facing the same symptoms.

When she was diagnosed with endometrial cancer back in September of 2006, her gynecological oncologist removed everything, including the lymph nodes. Lymph nodes are fascinating little things. They are part of the immune system and they are the body’s filter. The lymph fluid contains large quantities of the “infection fighters” - white blood cells. The nodes and lymph fluid filter out bacteria, infection and foreign materials that can be hazardous to the body – pretty nifty, huh?

For most people diagnosed with cancer, the only way to find out if the cancer has spread is to examine the lymph nodes. For those diagnosed with endometrial cancer, this is how the cancer is staged and graded. But here is where things can get a little bit tricky. Sometimes, no matter how cautious a surgeon is, when the lymph nodes have been removed, a few stragglers may be left behind. The nodes are microscopic and very hard to see with the naked eye. If nodes are left behind, the lymph fluid collects in them causing a condition known as lymphocele. Now, in most cases, the lymph nodes left behind will be reabsorbed by the body, but in mom’s case, her left behind nodes apparently missed that memo, so the fluid just continued to collect in those left behind nodes until they formed a large mass.

So, that is the reason that she still has that lovely drainage tube. It allows the lymph fluid to leave the body and in a few days, the remaining nodes should collapse and be absorbed. Now, lymphocele is predominantly found in those who have undergone renal transplant or any type of gynecological surgery for cancer. So if you fall into one of those two categories (or no someone who has) be on the look out for fever, chills, abdominal pain or any visible signs of swelling in the pelvic region.

While there is no concrete correlation between mom’s lymphocele infection and her surgery, the doctor does believe that some of the nodes were left behind which served as the catalysis for this latest medical episode. No one is at fault. There is really no way to tell who will fall victim to lymphocele and who will not – just be vigilant if you are in a caregiver position.

Now that we have that all cleared up, we have had two good days at Casa de Longo. Mom is slowly returning to her routines, even though I think there are days when she probably does too much too fast, but for those that know her that will not come as a surprise. Her nurse came by and she was amazed that at the age of 80, mom’s only real illness has been the cancer – it’s good genes! Mom really liked her nurse and she was extremely helpful in getting the physical therapy and follow-up appointments all lined up for mom.

It’s a relief to have her back home. She has come along way in two days and I really think that has a lot to do with being in one’s own environment. I am a firm believer that when we are surrounded by things that are both familiar and comforting to us, we have a tendency to feel much more relaxed and I think that definitely aides in the healing process. Besides, it makes it much easier for Andy and me to check on her (and pop) a few times during the day.

I am also glad to report that our “Meals on Wheels” deliveries have resumed. It’s not that mom and pop can’t cook for themselves, but a few times a week, I always make a little extra, as does Andy. It’s hard to take care of someone who has a major illness, especially when it spans a few months - everyone needs a break now and then. So during those times when momisan doesn’t feel like cooking, we try and give them a cooking reprieve.

Tonight’s delivery was chicken stew with fresh herbs, veggies and baby red potatoes and flaky biscuits. When I arrived at Casa de Longo, I knocked on the door (I avoid the bell for fear mom is resting) and after a few moments, I let myself in. (sorry you gave me that key…aren’t you? ) ;o)

I found the living room empty and as I tip-toed my way to the bedroom to check on mom, I found the cutest sight…mom and pop were napping! Even though we are in a holding pattern until pop’s CT scan for his ocular cancer, I am sure he gets tired like the rest of us.

I left a note on the counter and put dinner in the fridge and quietly snuck out of the house like a giant church mouse! Mom called me three hours later and said that the most amazing thing had happened…Food Fairies had come while they were sleeping and they had left a lovely meal in the fridge for which her tummy was truly thankful for. Now before anyone thinks my mom has been hitting her meds too hard, she didn’t really see Food Fairies, she knew it was me…but it was totally cute when she called. :o)

Here’s a big round of applause for all the Food Fairies who manage to drop care packages to cancer patients and/or their families. Every random act of kindness and support that is shown to a family struggling with cancer is both priceless and appreciated.

Find your blessings this weekend!

Val

Home or Bust

Thank You Lord that the past ten days finally came to an end today.

As I stated in a previous blog, it has been a very rough week for me (Andy and Pop too) with mom in the hospital and lovely family drama that has me on the verge of being the recipient of a peptic ulcer – it’s pretty safe to say that I hit my breaking point this week.

But I am happy to say that we finally got our blessing today – we took mom home…drainage tube and all. That’s the one reminder she has of her hospital visit, but as soon as those lymph nodes close up and stop draining, the tube will be removed. She’ll be on antibiotics for two weeks and will work with a physical therapist to work out the kinks she has from being in bed for ten days. All other Cancer treatments are in a holding pattern until she is fully recovered from this infection and gets some of her strength back.

She is all settled in at Casa de Longo and she is looking forward to a good night’s sleep in her own bed.

As I have stated in so many of my other blog postings, we celebrate every single step that moves us in a positive direction…and today was no different. As the nurse wheeled mom to my truck, everyone admired her “Home or Bust” sign. And as we drove home, mom grabbed my hand and told me that she was “leaving the dance with the one that brought her.” Do you hear that, Cancer? We are going to two-step, electric slide, waltz and Samba our way to the end!

Here’s to a good night’s sleep in ones own bed surrounded by their own stuff!

Thank you all for your prayers and well wishes, tomorrow is another day filled with new blessings and adventures.

Val

(With a son and son-in-law in law enforcment, we never want for a police escort!)

What a Tease!

I got a call from pop this morning and he said there was a little confusion between mom’s doctors – go figure!

The attending physician had every intention of discharging her today, but he forgot to confirm with the infections disease guru. Mom has more staff than the President of The United States!

The infectious disease guru came by to remove the drainage tube that he sutured in after her CTI aspiration. He said that there was still more fluid draining that what he would like to see, so he would not sign off to let mom go home. I know she was disappointed, but we explained to her the importance of making sure everything was cleared up before we took her home. As a matter of fact, I thought for sure she would have been much more upset about the mix-up, but she took it in stride.

She looked well today and she is able to do so much more for herself. She gets in and out of bed with minimal assistance and she seems much stronger with each day that passes…and that’s GREAT news.

Pop spent the morning with her and Andy stopped by for the mid-morning visit. I take the lunch and mid-afternoon visit.

As I unpacked her non-institutional sustenance today, (thank you Jason’s Deli) mom told me that there had been a new nurse in to take care of her. She proceeded to tell me that when the nurse introduced herself, she asked mom what her name was and mom had replied, “Momisan.” For those of you that don’t know, that is what my husband calls my mom. I just found it so funny to hear strangers enter the room and say, “How are you, momisan.” Tomorrow, it would not surprise me to see her staff backing out to leave the room, bowing and saying, “Arigato, Momisan”!

Just goes to show that even mom can keep her sense of humor in difficult times.

Hopefully, we will be able to take her home tomorrow. But as I finished making her a turkey from a latex glove (spending so much time in hospitals, one learns to entertain themselves), she said it had been a good day…and you know what…tomorrow will be even better!

Val