I’ve decided to write a blog about what I am facing right now with regards to the uncertainty of cancer looming over me and the inevitable hysterectomy that I will be facing here in the next couple of weeks. My reasoning is because I have found writing to be a wonderful healing outlet for me and I will soon have plenty of time on my hands to nurture this creative side of me. I also hope that maybe my experience will help someone else who might be going through the same thing. Also others may have wonderful advise for me who have already traveled down this road.
This journey really started back in early childhood but specifically at the age of 12 when I first started my moon cycle and became a woman. It’s funny, my parents generation was not comfortable talking about sex with me or the rites of passage that a young girl goes through when she officially becomes a woman. Basically the fear of God was instilled in me which took many years to overcome. I remember in high school having very painful and difficult periods, to the point where the pain was so intense that I would vomit, and still do to this day. Leaving me incapacitated for at least a day or two.
Growing up my father was never around or a part of my life. He worked long hours, and when he was home he did not want to be bothered with me. I am the youngest of four children with my oldest brother being 18 years older, my sister 13 years older, and my closest brother in age being 10 years older. I ended up spending lots of time alone and out in nature. My parents were really over having children when I came along. They felt if they provided a roof over my head and a meal to eat they were doing their job. This is not as tragic as other childhoods I have heard of, but it certainly left me feeling abandoned and lonely for affection as a child. I certainly do not place any blame on my parents. I do understand that they did the best they could with their emotional level of relating. It’s just interesting to see how this has set up patterns in my life that I am finally recognizing and determined to change in the face of adversity.
These experiences have set up patterns in my life where I have always been attracted to men that have been emotionally unavailable to me, who have abandoned me and who I basically do not stick to. On a deep level it is all I know. It is nice that I am now consciously recognizing this and knowing that I am all that I need to make me happy. It is not something outside of me or in the next relationship. The first relationship I am having is with myself and I hold that now very close to my heart.
What does all this have to do with my health issues at the moment? Everything! All “Dis-Ease” begins on the emotional level and then manifest’s in our bodies if we do not transmute and release it. More on this later…
Coming back to recent times I knew I had some smaller fibroids and some small cysts on my ovaries when I was rushed to the ER with intense abdominal pain back in 2007. It ended up being an infection in my right fallopian tube that put me in the hospital for four days with multiple intense antibiotics administered through an IV. This is one time I was so thankful for antibiotics because with out them I would have died back in the day. The cat scan that was administered for all of this reveled the small fibroids and cysts but nothing at that time was alarming.
Now we fast forward to this past December 2014 where I noticed that the fibroids were getting noticeably bigger, extending all the way to my iliac crest and felt like the size of a banana. I also started having incontinence issues. WHAT!?! I was baffled and could not believe this was happening to me at only 47 years old. I am very physically fit for my age and I knew there was something more going on. I sought out additional alternative healing modalities. I say additionally because I have been receiving acupuncture for my menstrual cycle and the fibroids for over 15 years now and it did offer a lot of relief for me. I then decided to seek out some abdominal energy work to really check in with that area. It was wonderful and felt great but it did start what many healing practitioners call “the healing crisis” for me. Things seemed to be getting worse, not better.
I decided it was time to go in and get checked out at the doctors office. After a palpable exam I was sent to Salida regional medical center for a pelvic ultrasound. Great I thought, this will be easy. Well it wasn’t. I had extensive blood work drawn that day, leaving me very weak. I then had a student examine me with the internal pelvic ultrasound wand. Because things were so large and twisted in there she accidentally flipped off my cervix with the wand and tore me. It was painful and actually laid me up for two days after wards. Soon I was feeling recovered from that and was anxiously awaiting my results.
The test results came on the afternoon of my 48th birthday. They called and told me there is a very large mass on my right ovary that they highly suspect as cancer. Really….on my birthday? I got off the phone and immediately let a few close friends know of the news. I laid down for about an hour and had my cry and really honored that fear. I let it move past me like the clouds in the sky and proceeded to have the best birthday I have ever experienced. Dancing all night long with some 40 of my closest friends. I was not going to let that blob of questionable fear ruin my day, and boy I didn’t! I am really proud of myself for moving through it with ease and grace that day.
After the emotional and physical high of my birthday celebration passed it was time to get serious again with all of this. Two days later I was seeing a wonderful OBGYN in Salida and she immediately scheduled a uterine biopsy, cat scan, mammogram and blood work to detect cancer markers. I have completed all these tests and got my results on Friday afternoon, two days ago….
The uterine biopsy came back as normal, but that I do have an enlarged uterus. The cat scan showed a large tumor (6.5 inches) or the size of a large grapefruit or cantaloupe on my right ovary. They also found numerous fibroids on my left side measuring 5 inches in length and 3 inched wide, an enlarged liver and a hiatal hernia, which I already knew I had. My mammogram showed two masses on my right breast, but since this was my first mammogram they are not sure what my baseline is. They recommend I get retested in six months. Finally the blood work for cancer markers did come back as high. The doctor did tell me that it is only 80% accurate. At first, this concerned me, but I later found out that because of my history of Castleman’s disease that it will usually come back as high. (Castleman’s disease is a very rare lymphatic disorder that fortunately in my case was cured with the removal of a lymph node from my neck. There are only a few hundred cases reported worldwide).
So here I am, still facing the possibility of cancer and a major hysterectomy that will be scheduled very soon. Because everything is so big down there they will not be able to do the robotic surgery which is less invasive. I was told I will most likely be cut from the top of my abdomen down to my pelvic bone. In other words, they are going to gut me. Haha…I still have to maintain a sense of humor through all of this. It reminds me of the ending in the movie Braveheart when they gutted Mel Gibson and his last words were “Freedom!”. In a way, that word has many levels of meaning for me with regards to all of this. This procedure is not for sure yet, we will see what the surgeon says very soon.
Am I fearful….somewhat. I still have faith that the large mass is not cancer, that it is just what remains from that awful infection I had in there some 8 years past. I am faced with the fact that I really will be incapacitated for at least 6 weeks or more. This will be a long recovery if they do cut me all the way down my belly. The lack of any financial income coming in during that time makes me uneasy, but in reality, it is the slow time of year for me so now is the best time for this to happen. Many people have already stepped up and have been great shoulders for me to lean on, to talk to, and to know they will be there for me when I need help the most. It is heartfelt and humbling and that this is just one of the many doors that will be opened to me during this process.
So this brings me back to my earlier subject of abandonment. In Dr. Christiane Northrup’s book “Women’s Bodies Women’s Wisdom” she attributes the emotional cause of fibroids and uterine cysts to be from abandonment issues in ones life. BINGO! This has been such a theme for me since day one, and until you can heal from the emotional cause of any disease true healing cannot take place. This brings me to the place of my true willingness to “Let it Go”. To let these past patterns be observed, honored and released. I truly welcome this surgery and the relief and release that it will provide for me. Enabling me to begin a new journey of self love and self discovery and the wisdom now to know that no relationship will complete me. Only I can do that with me, and that I will not have another relationship with a man unless it benefits me and enriches my life. Relationship is not a need like food and water. It is a want, and I would rather choose to spend that time and attention on my self and my own wellbeing.
I will know more tomorrow when I call University Hospital in Denver to schedule my consultation and then surgery. I will update this when I know more. Thanks to those who have read this, I hope it helps in some way. It’s onward and upward from here!
March 9, 2015
Here is the latest update on my surgery which is scheduled for Monday March 23rd at the Anschutz Cancer Pavilion at the University of Colorado Hospital. I met with my surgical team last friday and I feel very confident in them. This is really a top notch facility and I will be in the best care possible. I will be in the hospital for 5 days and then staying in the Boulder area for another week to stay close to the hospital for followup visits.
I also found out that I have a partial collapsed left lung in the lower lobe. How can that be with the level of exercise that I do? The surgeon does not feel it will be an issue for surgery which is good. I will be cut from my pubic bone up to my belly button and possibly up to my rib cage depending on what they find when they open me up. This will require a longer recovery period than your normal hysterectomy. I already have lots of books and movies and online courses set up to entertain me during this time. This is what is going to be the most difficult for me, not able to do much of anything.
The larger issue at this time is really the Castleman’s disease, in which know one seems to know anything about it. Even at CU they have never had a case to study. Well, here I am! haha….They have scheduled me with a hematologist to take over this part of my case, they are very excited and interested in it as well. Fortunately I have found a wonderful doctor via LinkedIn who is a specialist in this disease and is also a survivor. His name is Dr. David Faigenbaum and he is the Adjunct Assistant Professor of Medicine at Perelman School of Medicine at the University of Pennsylvania. He is amazing and has agreed to consult with me on my journey. He has Co-founded the Castleman’s Disease Collaborative Network which has been an invaluable resource for me. www.castlemannetwork.org. I feel very fortunate to have found him!
So the countdown has begun for me, two weeks from today is surgery. I am actually looking forward to it and to begin my road to recovery. I still feel with all my being that I do not have cancer, I don’t think the doctors do either. I am so thankful that my good friend Loretta came with me to my appointment in Denver, she was awesome at taking notes and just being there for me during that long 13 hour day and 8 hours of driving. I am also grateful that my sister contacted me and she also came to the appointment. I had not seen her since my mother died in 2011. She has really reached out and has done a lot of research on the Castleman’s herself. I am lucky to have her and we have begun to heal our relationship. This is one of those doors opening up that happens when faced with adversity, and I am walking through them with an open heart and open mind.
I will check in again before or after surgery, depending on how things go. Thanks to all of you for your continued love, prayers and support for me on this healing journey. I am so blessed indeed! I am looking forward to releasing all that no longer serves me. In Love and Light ~ Cathy
April 10, 2015
I am happy to be updating this blog and to be at home recovering from surgery. Last time I checked in I was preparing for surgery in Denver. I was calm and really ready to get it over with. I arrived into the city four days before my scheduled surgery to meet with a hematologist at CU hospital to go over my Castleman’s part of my case.
I arrived promptly to my scheduled last minute appointment before surgery. I meet with the doctor but I was not impressed by him at all. He was very arrogant and kept talking about how smart he was, and that my Castleman’s was no big deal. I was feeling like this is a waste of time. I went ahead and had a chest x-ray and thyroid ultrasound at his request. However, I did not go ahead with the liver biopsy that he wanted. I had heard that there could be complications with such a procedure and I figured if it is not broke, don’t fix it. I already had enough abdominal trauma going to take place. My other two tests came back as perfect, and needless to say, I did not ask to have him check me out again. I did not want him on my “team”. It is important to remember that this is still your body and you have the right to decide who will and will not work with you.
After that experience I headed to Boulder to get set up and my recovery room ready at Gayatri’s house. She has been such and angel and so supportive during all of this, I could not have done it without her. It was really nice to be with her and to be in the city. We were all ready to spend some time out on the town in Boulder before my surgery and “paint the town red” as they say. The next day’s unfoldment proved that this would not be the case. I ended up getting my last period or “Moon” cycle the next day. Because I was having surgery in three days I was unable to take any pain medication for my cramps. My last period ever went out with a bang. I was in excruciating pain, vomiting and laid up in bed the whole time before surgery. The only thing I kept thinking was that I will never have to experience this amount of pain and discomfort again. I was SO ready for my surgery that Monday.
The morning of my surgery arrived. I woke up counting the hours until I was scheduled to go in. While still fasting and completing my bowl prep the day before, I packed my small overnight bag and waited for my departure time. A call came in about 10:30 from the hospital stating that they were running ahead of schedule and they wanted to know if I could come in early. (When do hospital’s ever run ahead of schedule?) Whoo Hoo I thought, I get to get this Alien baby taken out of me sooner rather than later! We were ready and we packed the car and off we went to the hospital.
We arrived at the University of Colorado Hospital, a facility that is beautifully impressive with all of it’s new and modern equipment. The check in process was smooth and professional, and after about 20 minutes they called me back to prepare for surgery. Again, this whole time I was never nervous, anxious or scared about my surgery. I was so trilled that the time had finally come.
The surgical prep team was great, they got me all ready and in my gown. While they were putting all my IV’s in me I was able to meet most of my surgical team. I was really psyched that besides my surgeon, the entire team was made up of all women. I loved it, and they were awesome. While they were administering my epidural of morphine my doctor came in to check on my one last time. We both looked at each other like we were team mates getting ready for the big game and having confidence in each other and knowing that “We Got This!”. My sister, oldest brother, and Gayatri came back one last time to wish me luck. It was touching that my oldest brother had tears in his eyes. I reassured everyone that this is going to go great and I will see them soon.
The last thing I remember was being rolled into the surgery room. I waved at all of the team and proceeded to show them my list of positive affirmations that I wanted all of them to read. They taped the list to my pillow where it ended up staying next to me during my entire hospital stay. I also was allowed to bring in my phone to surgery so they could take pictures of what had been inside of me. Since I love anatomy & physiology I was psyched that they would do that for me. Then the mask was placed over my nose and mouth and that was it….I was out.
During this time I had many people praying for me including family, friends, teachers, Rinpoche’s and my amazing community at large. I know with out a doubt that these prayers lifted me up and facilitated a successful surgery. My deepest heartfelt thanks goes out to everyone who prayed for me!
It seemed that about 10 minutes had passed when I was being woken up by the nurse saying “That’s it, we are all done” I said “really, that was it?” It was crazy that time felt like it disappeared and those three hours only felt like 10 minutes. It was just a little while longer before one of the resident’s came in and told me that I had stage IIIA Ovarian Cancer. I was shocked and did not say a word. Later we would find out that the diagnosis would change another two times…..
May 14, 2015
My stay in the hospital went very well and I ended up leaving a day sooner than expected. I think everyone was shocked to hear of my diagnosis. At first the doctor had come out of the surgery and informed my friends and family that it was a stage IIIA and that they where able to get everything that they saw. We all took the news as best we could. I remember just being so relieved that the surgery was over and that everything was gone. I would not have one more period in my life again, ever….thank god! I was so very tired and tried my best to get some sleep which is hard to do in a hospital with nurses and doctors and visitors coming in your room at all hours of the day and night.
The next day I woke up to a beautiful sunny day in my private room at the end of the hall on the top floor. How did I manage to get the best room in the hospital? I don’t know but I’ll take it! It is such a new and modern hospital with all the best amenities you could ask for.
My doctor came into my room that morning and informed me that they found cancer in two of the six lymph nodes that they had removed and also on my abdominal wall which they were able to got all of it. Because of this they have changed my diagnosis to stage IIIC Ovarian cancer. Okay I thought, I will still beat this…this does not change anything. They are just numbers to me.
That day I think I had eight people come and visit me at the hospital, I was so touched and felt so much love. My good friend Rene’ was the last person to see me that day, poor thing had to sit there and try and talk to me while my head bobbed back and forth trying to stay awake. She could see how exhausted I was and gave me a big hug and kiss goodbye. I was finally able to get a few hours of sleep which I needed desperately. The next day we had a freak snow storm in the city and that kept everyone at home. I was able to catch up on some well needed rest and I had some quiet time to reflect on what I am now facing in my life.
That next day I was up walking around that hospital floor the day after surgery. All the nurses were so impressed with how far I could walk around. I just wanted to get moving so I could get back home as soon as I could. On the fourth day I was released from the hospital and went to Boulder to stay at Gayatri’s house for about a week before we headed back to Crestone. We wanted to be close to the hospital in case I had to go back in. I recovered very quickly in Boulder and was blessed to have friends come and visit me there as well. I was so ready to be home with all my dog’s and kitty too, I just love them so much.
The day had come when we were heading back home to Crestone. I was overjoyed and so happy to see my little town again. Seeing all my friends faces and smiles again just warmed my heart. There is no other place I would rather be than in my awesome little town of Crestone. We know how to step up and take care of each other. We are so blessed to live where we do!
My good friend Scott had stayed at my house the entire time I was away and took care of all my furry children. I was so happy to see him and all my kids when I got home. He was there ready with a green smoothie in hand and delicious food on the table for me. We all just sat down and got caught up on everything, shocked at my diagnosis, but confident that I will beat this.
The next day was another beautiful blue bird spring morning. I asked Scott if he would go with me on a walk, I just had it in me that I needed to get outside and see how far I could go. We got in the car and drove up to the Willow Lake access gate. We started at the closed gate and proceeded to go for a “small” walk up the road. I was not moving very fast but I was moving along at a reasonable pace for someone just being ten days out from full abdominal surgery. I felt great!!! I felt alive!!! I did not want to stop walking….so I didn’t. Before I knew it I had hiked up about 800 vertical feet up to the Willow Lake trail head. My adventure that day ended up being a 2.5 mile hike. I did not set out to go on such an adventure, but I think down deep in side of me I just had to prove to myself that I could still do it, that I am alive, that I am a warrior and that I will overcome!
Recovery from surgery went really well. I healed up very fast and was given the green light to resume all activities two weeks sooner than normal. YES!!! This was the easy part, recovering from surgery. The hard part is going to begin when I start my chemo treatments. That is going to be the fight for my life…..literally.
June 4, 2015
I arrived in Denver the Friday before my first chemo treatment. I had my appointment with my doctor that day to go over lab results and my latest cat scan. I was in a good mood, but anxious about my first treatment which is understandable. They took my weight, my blood pressure, my temperature and went over my records again like they do every time I go in for my weekly blood work. My blood tests came back that morning and I was thrilled that my CA-125 test was at 37! Normal range is between 0-34. Before surgery I was at 934, I was ecstatic!!!! I was feeling on top and in control!
That was until the doctor came in and we went over my latest cat scan. He pointed out that the spot of cancer on my diaphragm had gotten bigger…..wait…what? Cancer on my diaphragm? Well, it turns out that my doctor thought for sure he had told me about the cancer being on my diaphragm, but my sister, brother and myself told him this was the first we had heard about this. I literally stopped breathing for a moment…. I could not believe what I was hearing. Im thinking to myself, ok the diaphragm is an important part of the body that we need and I cannot live without it. OMG am I really going to die!?! I was in shock. I started to cry for the first time.
Needless to say that weekend before my 1st chemo treatment I was in a complete depression. Something I very rarely experience. That is the funny thing with cancer that I am learning. This journey you go on when you are diagnosed is a complete roller coster ride. Up and down, good days and bad. I had a hard time pulling my self out of that one, but I did. I arrived promptly at 8:30am for my first treatment at CU Anschutz Cancer Center, yet I was very nervous and anxious.
I walked into the infusion center at the hospital and checked in at he front desk. This infusion center has 36 chairs to administer chemo. It was huge and impressive. I just kept thinking, man look at all this money they are making on Cancer. Crazy!
They again checked my weight, blood pressure, temperature and went over my record. But this time when she asked me to give her my birthdate I just broke down and started to cry. By her asking my date of birth, that means I will have a date of death and I just lost it. It took me a minute to pull it together, and I am a pretty together type of woman. After I had gathered myself they took me to my chemo chair. I would be in stall #19. I call them a stall but it is really a little cubical type room 8’x10′ with three walls and a big picture window, a very nice recliner, tv, and a couple of chairs for visitors.
My nurse was really nice and understanding of my mental state at the moment, after all she see’s this all the time. She really calmed my nerves and made me feel comfortable. All until the actual chemo started to drip into my port. The nurse has to stand right there for the first ten minutes to make sure that I do not have an averse reaction. What a scary thing to watch the chemo go into you for the first time. You start to wonder if your going to go into seizures, heart attack, or basically anything your mind can come up with, mine did. Fortunately I had zero complications. Thank god, I was able to relax and read and eat some food. Seven and a half hours later I was done with my first infusion. I felt fine but I was anxious to get home. If I was going to feel bad then I wanted to feel bad at home.
I felt fine all the way home and did not start to feel bad until much later that night. For the next four days I laid in bed with the most excruciating body aches, joint pain, muscle pain I had ever experienced. Every old injury I had every had was screaming in pain. I thought to myself, oh god I don’t know if I can do this. The pain was that bad, and I have a very high threshold for pain. That Friday following my first treatment I went for my acupuncture appointment. My god that saved me. It immediately turned everything around and I was not having the pain like I did. After that I was still pretty weak but not in pain and I could eat again. I am so grateful for acupuncture, for over 25 years it has been my main source of health care and it is being integrated into my current health regime today.
That first week of chemo was rough. I ended up getting a blood clot in my right arm so they put me on Fragmen shots for a year that I need to administer to myself daily. What a bummer, this means I cannot have any falls, which means no real mountain biking for me this year. Dang!! But hey, I am alive to be upset about it so when you put it in the right context it’s ok. The mountain and my bike will be here next year and I will be ready to ride!
Now that that was over I had the next two weeks to fatten up and try to get some exercise before the next round began. I decided to go ahead and cut all my hair off and donate it to a group called “Children With Hair Loss”. Since I was going to loose it anyway and I seem to not be in control of anything in my life at the moment, I could take charge of this. I prepared myself by watching Youtube video’s the night before of women with ovarian cancer cutting off their hair. Ironically one video really touched my heart. It was of Elly Mayday, a plus size super model whom I had never heard of before. She is only 25 and was also diagnosed with stage IV ovarian cancer back in December of 2014. I reached out to her on Facebook and we have now become fast friends. She has been a great support to me. This is a real bright spot in all of this. Her journey has really helped my journey. I did do a video of me cutting of my own hair so I could have it to look back on. If you would like to see it you can do so on Youtube here: Cutting my hair off.
The week after my first chemo treatment I headed back to Denver for my weekly blood work. This trip brought both good and bad news. The good news was that my CA-125 test came back at 13!!! Whoo Hooo!!! The bad news was that my white blood cell count was dangerously low. I was completely open to any infection or sickness. My numbers had to come way up if I was going to be able to do my next treatment.
I had heard that exercise might help in increasing my white blood count. So four days before my second round of chemo I hiked up to Willow Park. This is a beautiful hike that generally only takes me an hour to do round trip. Not this time, I struggled. I had to keep stopping and taking breaks but I kept moving and I eventually made my destination. It took me twice as long as it normally would but man it was amazing to be out in the woods and nature again.
The next day I went back to Denver for my blood work to see if I would be able to do the next round. Sure enough my white blood cell count had quadrupled and I was back within the “normal” range and was a go for round two!
The day before my second round my good friend Cynthia and her big black Dodge Hemi pickup called “Hank the Tank” took me down to Denver. Hank was the butt of our jokes our whole time down there. You see Hank has a thing for me, so we joke that Hank is my guy and he’s gonna take good care of me. My attitude going into this second round was like night and day from the first round. I was in great spirits!
We arrived at the infusion center promptly at 8:30 am. We again went over all my vitals and when I was asked my date of birth I did not cry this time. I got this!! Today they introduced a new chemo drug on my program. This is a total of three IV chemo drugs I am taking which are Taxol, Carboplatin and now Avastin, along with the study drug ABT-888 via a pill for seven days during treatment. These are the best targeted drugs they have for ovarian cancer today. This new drug added an additional hour to the treatment, so we did not get out of there until 5pm. I felt fine and we headed back to Crestone like our life’s depended on it. Hank got us home in style!
That night I again started to feel like crap but to my amazement I did not have the body aches and muscle pains like I had experienced before. I was so grateful for that because I was really questioning whether I could continue if the pain were to get any worse. My guides and angels are watching over me, what can I say. This round went by much smoother but during that week I could not eat. I had no appetite and was nauseous most of the time. Needless to say when I went back for my last blood work I had lost 10 more pounds. I am now down to 127! Holy cow, I think I weighed that when I was in junior high school. So my job now for the next two weeks is to eat, eat, eat! I have an appetite now so this is what I have been doing.
Just a quick note on patient advocacy. I cannot express enough how important it is to be as much of an informed patient as you can. Things get missed, people are human and make mistakes, and there are also differing opinions between Western and Eastern models of health care. Remember in the end it is your health and your body and you have the final say on what is happening to you. Also I have had a few people come up to me and say that they cannot believe I am doing chemo. When people say this they need to realize that this is hurtful to the patient. Beleive me chemo was the last thing that I wanted to do. But I want every chance at beating this. I not only want to survive but I want to THRIVE afterwards. The ones that have thrived afterwards are the one’s that have incorporated both chemo and alternative therapies. Please honor the choices that people make in their health care and just be as supportive as you can to them. You never know what you will do until you are faced with certain death yourself.
My white blood cell count is extremely low again, but that is what the chemo does. I am hoping to get out hiking again very soon and prepare for round three coming up on June 15th.
A good friend of mine, Kay Beaton came and visited me in the hospital after my surgery. She brought me these confetti shooters which I love! Now after I have finished each cycle I shoot off my confetti shooter, which I joyfully did after this second round. Two down……Four to go! Thanks Kay!!!