I'll remember you.

I guess this is goodbye? Goodbye to the cancer, the menace, that could have taken my life at age 39. Maybe goodbye forever, or just so long until we meet again. I have hit another milestone. Living 5 years post last treatment for my advanced metastatic melanoma. Actually, I passed that date some time ago. My treatment ended on or about Super Bowl Sunday 2012. Just after the day the immunotherapy medication I was taking started irritating my heart to the point that I developed Supra ventricular tachycardia with rapid ventricular response. My heart was beating at 240 bpm,  which is the heart's theoretical maximum. This predicament certainly excited all involved. Luckily, running through the list of treatments for SVT with RVR, we found that the last and slowest method worked. To injections of adenosine had no effect, 2 electrocardioversions did not alter my rhythm, good old amiodorone did the trick (slowly). That was how my HDIL-2 treatment ended.
I truly believe that the amount of IL-2 that I was able to take, the sicker I got, the more extra cellular weight I gained, the more I hallucinated, the more my skin became red, irritated and even peeling off, the lower my BP got, the lower my MAP got, had a significant impact on the success of my treatment. I also feel that, the fact that my thyroid gland was damaged as a function of my treatment is indicative of the fact that my body, my immune system was activated and killing cancer cells and got a little overactive and went after my thyroid. From what I have read, this often happens, and tends to happen to those patients that have a complete response to HDIL-2 (like me).

Anyway, I digress. My last imaging and exam at SCCA were in January. At that time we did neck/chest/abdomen/pelvis CT and brain MRI. We met with my oncologist, Dr. Tykodi, who explained that all imaging was unremarkable. At this point, he informed me that patients at this point in their follow up are given a couple of  options: 1. to not come back for evaluation unless a concern arises, or 2. Come back to SCCA one time per year for abdominal ultrasound and brain MRI.
We chose to continue our follow up care with SCCA with testing and imaging on an annual schedule.

I am so profoundly thankful for my life today. It's not always perfect. Some moments get pretty close. Some things havn't gone like I had planned. I'm sure I will have more surprises in the future. Some will be more enjoyable than others.

Again. I'm off track. I'm lucky. A real hard, scary, painful portion of my life is over. There were definitely a great many happy and  truly fantastic moments shared with my family and friends during those scary times. That's when I felt like the most fortunate person in the world, even though I may have been dying. Grief sometimes makes gratitude grow. It did for me.

Today, my life is great! Filled with normal things; a husband.(that I love dearly), a family (also loved dearly), friends ( loved dearly), I still have the same dog Lola (love, love, love her). I will always remember being so heartbroken to think she would outlive me. However, I do wish she could live to be 50 or so, comfortably of course. She was my silent companion during my bad times. Of course, Kelly was my companion too, but he also had to work to care for me. I have a job. Activities that I enjoy and we love to travel. We try to go somewhere new every year. Something we wanted to do later in life but having cancer made us reevaluate and decide not to wait. Do the things that you want to do when you want to them and are able to do them. If you wait, time may run out.

We live planning for the future but knowing that our focus cannot only be aimed forward. What we do now, today is as important if not more than what we plan to do later in our lives. Tomorrow, next week, next year, is not guaranteed to us. I have to remind myself often, even after my experience, live today like you won't have another. That can mean anything, take a vacation, spend time with your loved ones, go to work and have purpose, spend time by yourself, get outside. Just do something, and keep in mind, we survive to thrive not to merely get by.

I still think of my cancer daily. It will always be a part of me. It has affected me mentally and physically. I don't think it will ever disappear, but it will occupy less and less space in my mind as the years continue to pass without interference from cancer.

I have hope!!
❤Heather

This is the day!

Hey!! Guess what?  I'm still here!

It's been another year. Life goes on as if cancer has never touched me, but it has. It has touched me with it's heavy hand that leaves it's indelible mark. Some marks are deep and ugly, some are invisible and painful. Cancer has taken parts of me, what's missing may not be noticeable to others, but I know what I've lost.

Cancer leaves a mark on everyone that it comes close to. Those whose family members and/or friends have been hurt by it, maybe their lives taken by it. Cancer touches those who spend their lives treating those afflicted with it. Cancer touches those whose lives are dedicated to researching it and searching for ways to prevent and treat it.

When I was diagnosed 5 years ago, I had a 15-20% chance of surviving to this day. That's not great. Not at all. The treatment plan seemed to be, "we'll try this until...". I can vividly remember feeling so distraught that I would die before Lola, who was at the time 7 years old. I remember when Dr. Mora informed us that I had Stage 4 melanoma, based on the pathology reports from my ovary that he had surgically removed. That was September 27, 2011.  It seemed he was holding back tears. I assume, because he thought I would die from this disease. Dr. Mora has since told me, that he did not think I would live. Certainly not past 5 years.

If I were diagnosed today, my survival rate would be higher (not terribly, but higher). That's because of the countless hours of research that have been done to develop new treatments and medications to treat advanced melanoma.

In 1975, Dacarbazine was the only agent approved by the FDA to treat metastatic melanoma. 15.3% of patients treated with Dacarbazine experienced partial (11.2%) or complete (4.2%) responses. Both the partial and complete responses were seldom durable, and fewer than 2% of patients treated with Dacrbazine were alive at 6 years. High dose Interleukin 2 was FDA approved for metastatic melanoma 23 years later, in 1998. This was the treatment that I had. It had a little better outcome rate. The overall response rate was 16% (CR 6%, PR 11%). 60% of the complete responders had durable responses (meaning they were still alive at 5 years). I fall into that group. In March of 2011, Ipilimamaub was approved by the FDA to treat metastatic melanoma. That's 13 years between the approval of 2 drugs. Can you imagine the frustration and dedication of the researchers involved. The heartache of patients, families and all of those involved in treatment of these patients. Since 2011, the FDA has approved 7 new treatments for advanced melanoma. All of these treatments are immunotherapies, which means they trigger the patient's own immune system to fight the malignancy.  This is in part because  melanoma is the most "immunogenic" of all cancers. That means, it is the most likely to produce an immune response. In 2013, the magazine Science named immunotherapy as the "Breakthrough of the year". This is a journal that covers everything from one atom to the entire universe and they considered immunotherapy to be the most exciting thing happening in all of scientific research, advancement and discovery.

I go to a melanoma symposium every year that is held at the Fred Hutchison Cancer Research Center, organized by the Melanoma Research Foundation. Every year I go and listen to the speakers discuss new treatments, new advances, new understanding of the disease. I listen to patient stories. I leave feeling amazed. Amazed that there are such truly advanced medical and research centers that I am a part of. Thankful that I have and continue to benefit from their excellence. Amazed that these brilliant doctors and researchers are so dedicated to research and treatment of melanoma. Amazed, and so grateful,  that I was fortunate to receive and continue to be followed by the physicians at this excellent facility. Amazed at the strength and grace exhibited by the patients who share their stories. Finally, with regard to my personal experience with cancer, I feel inspired, empowered, grateful, powerful, humbled and strangely proud of what I have endured.

I guess it seems odd, but I do feel proud because of what I have experienced. I feel powerful because of what I have experienced. I feel empowered because of what I have experienced. There is no guarantee any treatment will work. Who knows why IL 2 worked for me? But it did. And going through IL 2 treatment was hard. It was really, really hard. Harder than anything I have ever done and harder than anything I can imagine doing. I did it and gained 50 pounds each time. I did it and pulled out my own PICC line. I did it and my skin peeled off. I did it and developed SVT that required electrocardioversion. But I did it! I did it with a lot of help. I did it with a lot of complications. And I could do it again if I had to.

I don't think about cancer, my cancer, as much as I used to. But I still think about it everyday. I guess that says something about it's occupation of my brain. I used to feel an absolute certainty that when I  died, it would be due to melanoma. Now, I'm not sure. Maybe? But not yet.

Heather

4 years....and counting

Four years ago today, I was diagnosed with stage 4 metastatic melanoma. It felt like a death sentence, like a punch in the stomach, like the world had stopped spinning.

It has been more than a year since my last post. I have been wanting to write but just haven't had the words. Here is my attempt to bring you up to date.

Since that day, 4 years ago, not surprisingly, my life has changed and so have I. I have experienced some of the greatest moments and darkest hours of my life. I have travelled to far away places I never thought I would see. I have realized how very essential my family and friends are. I have recognized how much I did and still do take for granted. I know that life can go from beautiful to terrible without warning, I have learned that I should not be afraid of dying but instead be terrified of wasting this life that I have.

I have been NED, showing no evidence of disease, since March, 2012. I continue to be followed closely by my oncologist. We started with imaging at 3 month intervals for about a year, then 4 months for a year, then 6 months. My imaging had been unremarkable until February 2015 when my PET/CT showed some irregularity. After consulting with my oncologist we decided that another PET/CT in 3 months was appropriate. That PET/CT showed some irregularity in my brain so a brain MRI was ordered to evaluate more thoroughly. That brain MRI (5/15) demonstrated a lesion that could be benign or metastasis. Due to the continued presence of irregularity, another brain MRI was ordered in 3 months. My 8/15 brain MRI was still showing an enhancing lesion with no definitive diagnosis, which might be benign or metastasis. My oncologist does not seem terribly excited or concerned but has ordered complete imaging, neck/chest/abdomen/pelvis CT and brain MRI again for this December.

I have permanent reminders of my experience with melanoma. The physical scars have faded. I have been damaged but not broken. The emotional wounds have healed significantly but are easily reopened, reinfected. The mind, my mind is delicate and requires more time to mend than does the amazingly resilient body.

I still fluctuate between feeling ecstatic, strong, even unbreakable to feeling battered, weak, wondering where the person I used to be has gone.

Looking back, some of my most difficult and painful times were also the most powerful, remarkable and even beautiful. Those very frightening and physically unpleasant moments were when life seemed most meaningful. Worth suffering through anything to keep. A most precious gift that would be mine if I could just hang on.

I understand that I am one of the lucky ones. Why? I don't know. Maybe I shouldn't have survived. Maybe it's luck, maybe it's grace. It certainly isn't strength, courage or bravery that has kept me alive, though I'm sure it has helped. Strength, bravery and courage are no match to the power of cancer. Too many other people, including my friends and family, have not survived. Cancer doesn't play fair. It does what it wants. It takes who it wants. I am not stronger than those who haven't survived. I am not any braver than they were. I certainly did not fight harder than they did. But I am here, alive and so grateful. Maybe it's not over for me? This might be my NED intermission. My biggest battle may be yet to come.

Worrying serves no purpose. It doesn't change anything it only wastes valuable time. So I try, very hard, not to be troubled about the future, about recurrence. It is challenging, but I'm getting better at it.

As always, I am genuinely thankful and profoundly humbled by the support and love I have and continue to receive from my friends and family. During the best and worst of times, whether we are celebrating or I am in a hospital bed, I know I will not be alone. This has played an essential role in my continued health. I can't imagine how much more difficult this part of my life would be without all of you. Thank you, sincerely.

I am living my story, and it's not over.

~Heather

Time marches on.....

Today, I am NED. I have no (detectable) evidence of disease. I have no cancer that can be detected by today's medical imaging.  I need to let go of the pain, from believing I would, or will, die from cancer. Those of us affected by melanoma know that you never really say goodbye, completely. It is always lurking in your thoughts. 

It was 3 years ago that I was diagnosed with stage IV melanoma. It was the most painful emotional and physical experience of my life. 

Today I took a walk with my dog, in the sun. Even with a hat on and my skin covered up, I felt I was putting myself in harm's way. I see the sun, and sunny days, as the enemy. I think to myself,  what's wrong with me? I am a vampire. I am someone who loves the dark. BUT, I also felt as if I were visiting a long lost friend. 

The sun and I had had a long, and many times, painful relationship....me laying out in it, feeling the warm rays on my skin. Then after, feeling the sting, chills and pain that would keep me from sleep.  Days and days and years and years of sun. Melanoma changed all that....

I like shady cloud covered days...ones where I feel there are less dangerous UV rays. It feel safe. I am envious, at times, of people who sit out in the sun, enjoying it's warmth, seemingly unaware of its dangers. 

 According to the National Institute of Health "The prognosis for patients with distant metastases is generally poor, with historical 5-year survival rates of less than 10%." Yet, I am here. 

I remember the first nights after my stage IV diagnosis, crying myself to sleep, while Kelly tried to comfort me, this while he was dealing with his own fear and grief. I distinctly remember being terribly distraught that I would not outlive my dog.

I have just recently started believing that I will live to see my 50's and maybe even  retirement, how about 'old age'.

I feel as if I have cheated death, and continue to... for now.        

I know that I could not have arrived at this point without the abundant love and support of all my friends and family... and even strangers.  I am still awestruck by the outpouring of true care and concern I am, and have been, so fortunate to receive. Thank you all so much!

Each day for me is a gift, a celebration, and an opportunity to do something important. Easy to say, difficult to put in to practice. I'm trying, I'll always keep trying....

Happy and Healthy

I have had no evidence if cancer for over two years. My complete response to Interleukin 2 could be considered curative. Only time can tell. Today, I am healthy and happy!

I continue to be monitored closely. Since my last post, I have had 2 full body PET/CT scans, 2 full body CT scans and a brain MRI. All imaging has shown no evidence of disease.

I did have a very minor hiccup in December. I developed acute appendicitis. What started as a stomach ache developed into a short stay at the hospital. Fortunately, the infection was caught early and my appendix was removed laparoscopically without complication. This happened to be my third  laparoscopic abdominal surgery within 2 years. I am hoping for no surgeries in 2014.

Physically, I feel as healthy, maybe healthier, than I did before I was diagnosed with metastatic melanoma. I try hard not to take for granted everything that my body is capable of doing without limitations. My mind is what, if anything, holds me back. My mind has healed considerably in the last couple of years, although it is still scarred. Cancer is still my constant mental companion.

Today I am simply grateful.

Heather

N.E.D.

I am officially past the one year mark.  I am cancer free.  My last CT scan showed no evidence of metastatic disease.

There are a lot of statistics, most of which are pretty scary, they deal in months and years, median survival rates, 5 year survival rates, recurrence rates, etc.  Metastatic melanoma, stage 4 melanoma, is generally considered incurable. There are a number of people (6% according to statistics) treated with IL-2 termed complete responders, for whom the disease appears to be cured.  A complete response is defined as a long-lasting (10+ years and counting) elimination of the disease, although it is not technically a "cure". I am a member of that fortunate 6%.

I do not believe a person can truly grasp the effect that a diagnosis of metastatic disease can have until you have experienced it.  That is obvious I suppose. To believe, and have others believe, that your diagnosis in unsurvivable...but you are still here...for now. It's difficult to reconcile. You prepare for tragedy that doesn't happen, at least not yet.

I read through my previous posts, many of them brought tears.  I have forgotten how hard the IL-2 treatment was, and how strong I had to be to get through it. I had forgotten the feelings of desperation, of pain, of accomplishment, of exhaustion, of hope, of perseverance, and of determination.   I think I was stronger during my treatment than I am now.  Our bodies and our spirits are capable of amazing things, especially when failure simply is not an option.

I don't know if I consider myself a cancer survivor, or a cancer patient? I guess I am both, they cannot be separated. I am a person with a completely new perspective on life, living, illness, loss... everything.

I am here, I'm alive, in one piece, and healthy. Who would believe I have, I had stage 4 cancer? Well, I did, I do, but today...is a beautiful day!

What is normal?

My brain MRI shows no evidence of metastasis. Great news!

I am cancer free, no evidence of disease, just like I was a year ago.  Just like I was a year ago?  Back to normal, right?  I said to myself the other day, "I almost feel like myself again." Then I thought, "how can that be?"  I will never be the same as I was a year ago, pre diagnosis.  I am forever changed. I have new physical and mental scars. Some will fade and go away, others will always be visible.  Some may only be noticeable to me.

I have learned I am tougher than I thought I was. I have realized that I have more support from my friends than I could have imagined.  I appreciate that my family is truly amazing.  I know that Kelly will be by my side through anything, and he will carry me when I can't go any further.

My task now is to live my life, at least for the next three months when I have my next PET scan, and not worry about cancer. Never have I been so defined by a single description of myself (cancer patient) and occupied by a single thought (I have cancer) as I have been for the last year.  I guess it is understandable.  I have never engaged in battle with such a powerful force that is threatening to end my life. It is so hard (almost impossible some times) to think that I can stop fighting...at least for now. I'm afraid to put down my armor, I will be so exposed ...and it's been holding me up for what seems like such a long time. What protects you, when held too long, can become a crutch.

Some days are hard, some days are a little better. Wish me luck❤

Results

Kelly and I met with my oncologist in Bellingham yesterday to review the findings of my CT scan.  We were very relieved to hear that there is no evidence of metastatic disease on the CT scan.  I do have a nodule in my lung, a few cysts on my liver, and a few nodules on my thyroid.  I guess those are all relatively 'normal' and no one (radiologist and oncologist) seems to be concerned. I continue to have some unexplained nausea and dizziness. My oncologist has ordered an MRI of my brain to check for metastasis.  I am having the MRI tomorrow and we will get the results on Monday.  I am feeling very optimistic that the imaging will be unremarkable.
Thanks to all of you for continuing to hold me up and cheer me on.❤

One thing remains constant....change

It has been 6 weeks since my most recent surgery at UWMC. I would say that I am, physically, 90% healed. I am still dealing and learning to manage the effects of premature surgical menopause and all of the changes, responses and reactions that come with it. I am, of course, also still dealing with cancer, being cancer free and waiting for my cancer to come back. So many reactions/responses can be attributed to multiple issues; cancer, dealing with cancer, fear of recurrence of cancer, hypothyroidism, mild depression, hormone replacement therapy. Add to that the simple stress of everyday life. It is difficult, if not impossible, to compartmentalize. Cancer, still, invades almost all of my thoughts, everyday and every night.  I sometimes feel graced and empowered that I have made it this far. Kelly told me, some time go, that he did not think I would make it to my 40th  birthday. Wow!  Of course he is so happy that I, with a lot of help, could prove him wrong.  I wonder, how many other people are surprised that I'm still here. I sometimes can't decide what I believed was going to happen.  I guess I didn't think that far ahead, especially when things were really tough. You can only choose one direction, and it's out! Other times, I feel so incredibly unlucky to have received my diagnosis of cancer and all that has come and all that is yet to come with it. Somedays, I am so afraid, almost paralyzed with thoughts of recurrence. What would happen then I can only guess. A plan would be dependent on so many factors, all unknown at a time such as this.
Today I had a full body CT scan to check for recurrence.  We will get results on Wednesday evening. To be truthful, this is most nervous that I have ever been before a scan and while waiting for results. At times, I would even say terrified. I have been experiencing low grade nausea for the past week, fatigue, difficulty sleeping and have even lost a little weight. That last  part I would usually like, but it is now making me a bit nervous. All of these symptoms are most likely from stress. That being said, they are still unpleasant and disconcerting. I am trying to, as I always do, enjoy everyday, every event, and every person as much as I can. Sometimes it's easier than others:) Life is sweet and I really have all that I ever wanted and need right here❤

Safe!

This will be a short post. Just got the call from Dr. Urban.  I won't lie, my stomach flipped a couple of times as I answered the phone. She called with fantastic news, the pathologist found no abnormal or cancerous cells! Kelly and I are so relieved and happy.  Even though I am still recovering, I may need a glass of champagne to toast the news.  You can never have enough good news, and should never miss an opportunity to celebrate!

Rest, rest, rest...

My Surgery on Friday went well.  Dr. Urban removed my right ovary and Fallopian tube laproscopically as planned. While performing the surgery she did not see anything that she felt looked suspicious.  The frozen sections evaluated during surgery looked normal. All good news.  My surgery took about 2 hours. After surgery, I felt pretty nauseated, which is to be expected.  I slept a bit and Kelly picked up my prescriptions. I stayed in recovery until about 2:30. Once I could get up, walk around, use the restroom, I was discharged. Long drive home in traffic.  Since then I have been recovering at home, lots of couch time.  The pain was pretty intense the first couple of days, 4 incisions through abdominal muscles make almost everything difficult. Each day I feel a bit better.  Today after showering and getting dressed, however, I took a step backwards. Feeling pain, dizzy and nauseated. Time to lay down again. We are still waiting for the biopsy results from the pathologist, hoping to hear soon, thinking positively of course.

Heather

A planned surgery is better

We met with a team of Doctors yesterday, led by Dr. Urban. A gynecology oncologist. After reviewing my scans, performing an exam and a lot of discussion we have a plan for surgery. Dr. Urban feels that she will probably be removing benign tissue, but thinks it prudent to do so given my medical history. Dr. Urban will be able to evaluate the nature of these tissues (benign or malignant) during the surgery. If there is any cancerous tissue we change to plan 2, which is the removal of substantially more tissue, which require a more invasive surgery. We are feeling confident and positive. We know that we are in expert hands. Surgery is scheduled today at 5:30am aat UWMC. It is now 5:04. We better get to the hospital. Heather

There's only one way to know for sure

It is ironic that as I walked the Survivor lap at the Relay for Life last Friday I started to have some abdominal pain. I thought I just had a little stomach ache, not too unusual. My discomfort, however, lasted through the weekend. By Monday, I started to realize that this was a feeling I had felt before. This was the same pain/discomfort that I had last summer that we didn't know the origin of until I ended up in the emergency room. Based on ultrasound findings, it appears that I may have another ovarian cyst, or cysts. With my history of melanoma in my left ovary, melanoma is suspected in these cysts on my remaining right ovary. We will be returning to SCCA this Thursday for another scan, a consult/pre-op, and pre-anesthesia appointments. I will, almost certainly, have surgery on Friday to have a procedure called a bilateral salpingo oophorectomy (surgery to remove my right ovary and both fallopian tubes). These will be biopsied to determine if there is melanoma present. I have no idea, at this point, how we will proceed if there is any cancer present. We are feeling optimistic. I will be in expert hands at the SCCA and UWMC. I have beaten the odds so far and I don't intend to quit anytime soon!

Is that an elephant in the room?

It continues!!!  This last week there has been a cloud hanging over our heads. We didn't know if it was a black cloud or a happy cloud, we just knew it was there.  Following us around. Sometimes we would talk about it, most of the time we did our best to ignore it.  I'm, of course, talking about the three month PET scan. It happened on Wednesday morning, and we had an appointment yesterday afternoon to get the results.  We knew it had to be good news, but we still couldn't make out the color of that cloud... Well, it was great news!!! Heather continues to show no evidence of disease!!  We are amazed, doctors are dumbfounded. People with metastatic melanoma just don't respond this well. I can't believe how fortunate we are and how strong Heather has been through this battle.  The cloud remains, as Heather has said, "Melanoma doesn't fight fair." but right now she is winning and the cloud is happy and even letting some sun peak through. It will still follow us around, however, we can forget about it for a few months. The next scan is not scheduled yet, but will be sometime in September.  Probably won't be a whole lot of posts between now and then, but we know and feel all of the support we have out there. Thank you so much!!! Know that Heather will be spending the summer enjoying every minute, and continuing to win!!

Surviving

Today marks seven weeks NED (no evidence of disease). My next PET scan is in a month, and I am starting to get nervous. Sometimes it seems almost like I never even had cancer. It is a strange memory mixed with new self-identification mixed with a blurry understanding that it might not be over. I am balancing on the edge. Over one edge is the painful memory, which is not really a memory but more of a permanent piece of me. Over the other edge is a palpable pressure to live all of the lessons I’ve learned. I am stuck here in the middle. I am afraid of never being able to move forward. I am afraid of moving forward too fast and forgetting all of the lessons I have learned. What right do I have to feel sorry for myself when I am, so far, being given the ultimate gift? My treatment is working. I am experiencing what every patient hopes for and I am not grateful enough. I am balancing on the edge between life and death, while at the same time struggling to remember that it is even part of my life. I am constantly trying to define my new self. I evaluate every one of my actions, thoughts, emotions, to determine how it fits into this new life. Death has introduced himself to me. He occupies my thoughts, reminding me that no matter how “back-to-normal” my life may seem, I have forever lost control.  There is no escape. All I can do is fight, and for that, I am so grateful.

What a ride!

Six months ago I was diagnosed with metastatic melanoma. Unbelievable. What's even more unbelievable is that my most recent PET scan shows no evidence of disease.
I feel a mixture, sometimes roller coaster of emotions: joy, disbelief, amazement, shock, relief, exhaustion, and even guilt.
For now, I am winning. However, melanoma isn't a fair opponent. It plays by it's own rules, and sometimes (most of the time) plays dirty.
I am sure, at least for a while, I will feel as if I am looking over my shoulder, waiting...watching...wondering. Melanoma may want to play again. Hopefully, it is done with me.
I feel extremely fortunate, exceptionally lucky. My treatments worked. It wasn't easy, but I know that my story could be so very different.

Thanks to all for your support, love, and prayers.

Heather

It's been a long time...

It has been a long time since my last post. I apologize for not keeping you all up to date. However, there has not been a whole lot of new, news.

In my last blog entry I explained that my cardiologist had requested a cardiac MRI. I had that completed in early February and got the results about one month later. Basically, my heart function is healthy in every way. The MRI does show some 'moderate circumferential pericardial effusion with no evidence of tamponade'. Fluid around my heart but not enough to impair function. 'Trivial bilateral pleural effusions'. Small amount of fluid around my lungs.
'Three small, less than .6 cm areas of hyperenhancement in the basal anterior wall concerning for either inflammation or potentially mid myocardial metasteses'. Three lesions, the origin of which is very hard to discern, especially because there was no imaging of my heart in the staging process. However, if these lesions were present than, it is my understanding that IL 2 would still have been the treatment of choice.

All of my doctors feel that the likelihood is high that all of these abnormalities can be traced back to my IL 2 treatment, and as such are transient, and will disappear eventually. My cardiologist, Dr. Beglin, has requested another echocardiogram in June. Hopefully, all will be back to normal at that point.

I have my next PET scan this Friday March 23rd. We should get result early next week. We anticipate good news, however, anxiety always creeps in. We will meet with Dr. Rubin, my oncologist in Bellingham, on Monday. I hope to hear from Dr. Margolin, my oncologist in Seattle, next week as well. Good news or not, I would like a plan.

I have been feeling pretty well physically. Emotionally, I feel as if I am the same person, however I feel inexplicably changed forever. Physical pain is so much easier to push through.

I am so frequently reminded how fortunate I am for all that I have. Too many things, and people to list! Even on the bad days(and there aren't many),I can never forget that.

Thank you all for continuing to support us!

Fingers crossed for Friday,

Heather

There's always a 'but'...

It's Saturday, I have been home for almost a week. I feel marginal. I have lost 40 pounds since Sunday. Looking forward to feeling great soon!

Tuesday Dr. Margolin called and explained to me that she did not want me to have anymore IL 2 treatment. She feels the risk of me having more cardiac complications is too high. I figured that would be her opinion. I have to say, I was both relieved and saddened by this news. IL 2 treatment is awful but it worked for me. I feel like my best treatment has been taken off the table. It probably sounds strange.

I now have a cardiologist! After my most recent episode at the UWMC, a cardiac follow up was recommended. Thursday Kelly and I met with cardiologist Dr. Beglin. He reviewed my medical history and expressed his desire to help me treat my cancer most effectively. Dr. Beglin performed his exam and viewed an electrocardiogram(ECG) of my heart. Based on what he saw there he ordered an echocardiogram. He explained that he wanted it done soon so that he could give results as soon as possible. So, later that day, we came back for my echo. This test takes about a half an hour, no big deal. Apparently, I had an echo in the hospital in November. This is just another thing I don't remember.

Dr. Beglin called yesterday afternoons to let me know what the echo revealed. He explained to me that my heart function looks totally normal but there's just one thing....
There is some inflammation around the lining of my heart, the pericardium. This isn't surprising, this lining responds to the IL 2 like the rest of my body. However, Dr. Beglin explained, the are 1 or 2 spots that he can't see very well on the echo. To get a more detailed view he would like an MRI of my heart.

So, sometime next week (hopefully) I will have an MRI of my heart. Most likely, these small lesions are just inflammation from my treatment. There is a possibility that they could be cancer. Great! Lesions around the heart aren't detectable on a PET scan because of the way that scan works.

Today is a beautiful, sunny day! My sisters are coming up to visit for the afternoon! I have more to be thankful for than to complain about!

Until next time....

Exhausted!

I am so glad to be home. Rested on the couch all last night. Kelly unloaded the car and did all the laundry. We watched the Superbowl, me mostly with my eyes closed.

I didn't sleep well, unfortunateley, That's ok because I am only going to sleep today, right?

Kelly has planned to go golfing with some friends. It's a beauriful day! I am, not surprisingly, emotional and very tired. But, I am happy and prepared to hang out at home. I take my morning lasix and potassium, to help push off excess water. Kelly suggests I take a couple Ativan to help with me settle down. So I do. However Kelly quickly realizes that I probably should not be home alone. I accidentally took 2 more lasix, while not life threatenening, are sure sign that I am out of it. Now I feel even worse. For those of you that don't already know, Kelly is a saint, as least he is for me;)

We have an appoitment with cardiologist on Thursday to evaluate my heart thouroughly. I am interested to see what they discover. We are scheduled to go back to the UW next Monday to start the 2nd cycle unless the cardiologist and/or Dr. Margolin feel the risks of further cardiac incidents outweigh the benefits of the IL 2 treatment.

It's the limbo!

Feeling pretty good now. Just big and tired!!

Heather

Surprise!!!

Heather had a tough time sleeping last night. She developed an expiratory wheeze in her throat, that medically was no big deal, but it was so noisy that it was keeping her awake.

That's the bad news. She did manage to get a few hours of sleep, and her vitals stayed very stable through the night. We got up around 8:00 and the barrage of good news began!!

Heather had a repeat swab of her nose done on Friday to recheck for MRSA. Results this morning... negative! The PA came in shortly after and said things were looking pretty good and that we were probably going to be able to go home tomorrow. Not ideal, but still good news.

Next, came the nurse to unhook all the IV lines, BP cuff, EKG lines, etc. because Heather was being upgraded from "ICU" care to "floor" care. More good news. Heather was tired, but felt pretty good, so she decided to take a shower. Not long after finishing her shower, the PA returned with the doctor, and they were both surprised how good she looked. They hardly hesitated before they asked if she felt like she wanted to go home.

Not something Heather had to be asked twice about!!! She is still exhausted, but would much prefer to recover on her couch at home rather than a hospital bed. So, about an hour later, we were in the car and on our way to Bellingham!! I suppose this may come as a bit of bad news to a few of you, because it means no kegger in the ICU. :)

We made it home. Traffic was good, Heather slept all the way and continues to slumber on the couch. The laundry is done, the roasted chicken is on the counter, the super bowl is on, I'm in my PJs, Lola is asleep right next to Heather and the wine glass is full.

So good to be home!!!!