...54 year old learns she has Ovarian Cancer, confirmed as Stage IV after debulking surgery. About the time she begins chemotherapy, she begins to tell her story...the story of the trials and tribulations, joys and struggles of daily life while seeking balance of body, mind and spirit.
Tuesday, August 13, 2013
It's been a while...
Since my last post, much has happened. I did have a freakish bout of sharp pains in my abdomen in late July that were so unbearable and disconcerting that I went to the ER. After hours of waiting and tests and then a CT scan done prior to when it would have been, nothing pointed to why the pain that debilitated me for about 10 hours suddenly departed. The CT scan showed nothing, which is great news. I'll leave this topic aside...
I had my 55th birthday and it was truly a wonderful day that could not have gone much better than it did. I love thinking back on it because not all birthdays end up memorable or filled with love, but this one did. Ed must take full responsibility for how great it was, from the cake being exactly what I would have gotten myself, to him suggesting we take it to my mom's to have her share in the celebration...then a road trip to Lewiston to see Buddy Guy after an opening act I had never seen nor heard of, Robert Randolf and the Family Band, then crossing into Canada and checking into a motel nearby the strollpath to the falls. I thoroughly enjoyed walking with Ed along the path, under the Rainbow Bridge (scary for me with my thing about bridges), and further, with a rare passerby and the entire scene essentially to ourselves. The next day was wonderful too...ahh...I truly love thinking back to that trip...
The RV has varied problems that are proving difficult to take care of and there are times I feel very worn down about it. I hope that the list I just made doesn't continue to make my head spin in overwhelm, while I still have big projects on the house that must be done soon. I hope to be able to stain the deck soon...weather has been too wet to allow, and I have concerns about the solvents in the stain. Rather than make another to-do list here, let's just say that I feel like I have more to do than is possible and that although cancer has adjusted my perspective, I still get nervous and sometimes worried. I feel I have bitten off more than I can chew, so to speak. I have some ideas, but am not sure the sequence in which they must occur. And then there is the whole business of where I am going to be living this fall and winter. Holidays alone are no longer gonna cut it for me. I have a drive to make life be more fulfilling...we shall see.
To that end, I have a part time job. I am a caregiver to a six year old autistic child 2-3 afternoons a week. She and I connected immediately and although she cannot be unattended at all, doesn't use hardly any words and uses diapers, I find the job mostly rewarding and one in which I learn. I am very tired afterwards, by and large. I end up walking a lot...to the park with the child, up and down flights of stairs at the house and then being on fully...well, it is these times, after work, that I recall I am not recovered from the chemo yet. Not fully myself...So, a job while trying to handle maintenance on the house, empty rooms (not my strength), add to the pile for the sale that I had best have very soon, deal with readying the rv for travel, and it is no wonder that I have been feeling not-so-balanced.
There is so much more to say...I feel keenly aware of what living healthily would look like and am close...but the uneasiness with the to-do list, the uncertainties of other important aspects of my life, and the fact time seems to be zipping by, have me concerned. I'm not tripping out, but am often up too late reading all I can on the internet, as I attempt to learn one of my least favorite ways about things I really have no experience with. I just halted writing this to skip over to the Toyota RV Motorhome forum to post an outreach to any Central New Yorker who may be willing to come teach me some of the stuff I need to know...which felt productive. I also need to reply to some clist folks who are seeking housing that sounds like mine.
So, yeah, life is fully going on. I seek balance. I am one day away from going to the dentist and getting my teeth cleaned and that is a very exciting sign I am nearly 3 months post chemo. Oh, did I mention that my hair is growing in nicely? Let me end this post and head to bed by sharing a true story:
Last week I was shopping at a local health food store. They were having samples and sales and I was in there longer than I had planned. A woman approached me and said, "I love your hair!" My immediate and sincere response was, "Oh, thank you! I do, too! It's grown long enough to be noticeable!" The stranger's face told me she did not know, as I had assumed, that I was a cancer patient, blah, blah, blah. Upon realizing this, I explained my having completed chemo and the fact that the heat of summer had me ditch the wig a while ago and how I realized the joy of having such short hair in the summertime of CNY. The woman immediately asked if I was ok, and I was happy to elaborate on that, too. She concluded our interaction by telling me how she sincerely had no idea it wasn't cut the way it was purposefully and how good it looks. Wow! It was a make-my-day kind of interaction, for sure.
Tuesday, July 23, 2013
Post cancer amped to live...I guess it just alienates me
Saturday, July 20, 2013
10 days later...(draft) with current happenings added
Meanwhile, I thought I would share a mishap of lates. I have gotten cold sores, aka herpes, on my face since childhood. Last week I got a small cluster of three cold sores above the right side of my lip. I had some strong reasons why I really wanted it to go away quickly...so I took the valcyclovir tablets both morning and night...with no visible results. A friend mentioned using raw garlic on the site, so I read a little on the internet and gave it a try. It burned when I taped it on, which I took to mean it was killing the virus, as I had read. Note to self: if it sounds too good to be true, it likely is! I thought: all these years and I could have killed the virus with garlic? Well let me do so now. So, after removing the tape and noticing the cold sores were no longer puffy, they were flattened and smaller, I thought it might be wise to do it again...and again...and again...and...well, to cut to the chase, I kept it on the area and the virus, visual as new cold sores, seemed to spread and shrink up, and I was going with the above-mentioned theory. I thought I was killing it off and under that context, it seemed as though it spreading as it tried to live made sense. I also applied tea tree oil on the area the second day of this treatment modal that I was undertaking. That recommendation came from the internet, and after all I was doing it differently this time.
I have now abandoned the experiment after two and a half days. My face is burned. There are numerous cold sores, some flattened and perhaps dying, perhaps shrunken for having been burned. I have never seen my upper lip area so bad in my life. The experiment appears to be a poor choice. And I shall take note that when something burns on application, one needn't buck up and endure....one should take heed and stop. Damn. Such a simple and sensible rule.
This was written and saved as a draft four days ago. I can report that applying aloe vera seemed to help, the paper thin scab came off last night and today, and there is now no signs of virus, although the skin is pinkish. I am applying aloe. At this point, I wonder if there will be some miraculous outcome...as in no more cold sores in that area again. If that came to be, I would feel as though the theory I held was true...however, I am told it is not possible. Time will tell. For now, getting the area healed is the goal.
I am in the process of accomplishing a lot on a daily basis as I clean, clean, sort, make choices and work on the rv that will be used to go to CA. I will see Dr. Puc this week, and we will discuss new labwork, and other post cancer topics. I long to get my teeth cleaned, but given my low blood counts, I think that would not be prudent without her clearance. TBR...
Noteworthy for any who know me, in the summertime in CNY, there are many music events to chose from. Earlier in the month, Ed and I saw Starship (with one member from the late 70's), then the excellent Doobie Brothers, then we saw the New Riders of the Purple Sage last week and I always love them. Last night, a special day marking a year ago I made a new dear friend who I grew very close to and with, we went to see Furthur, featuring Bob Weir and Phil Lesh of the ol' Grateful Dead. The show was in Canandaigua, a Finger Lakes venue that I have grown to love and appreciate over the past few years. As it turns out, one of the strangest things ever occurred. Pounding rain began pouring down during the show and I could see lightning in the background. We had great seats under the cover of the pavilion and yet the rain misted on us as it poured hard. The band had taken a long intermission during which the stranger next to me and I began talking after she admired my shirt. Turns out she and her spouse, vendors and Furthur followers, were from CA and she specifically mentioned Arcata...small world realities...but Furthur returned to stage and began playing their second set and about four songs or one long song into it, Phil read an announcement and said they were told to leave the stage. I hoped it was a joke, but he returned to say that there was lightening threatening and that we were asked to go to our cars, get in them and drive away. I still feel some of the shock...we were loving the show, loving being together...and it was...poof - over! As we walked out, it was not raining. I was trying to rationalize...wishing I was operations manager...stating they made the wrong call. And they did. It did not rain again during the next hour we sat in the car enjoying our salad and our desert balls made of nut butters, cocoa powder and honey...
Dissappintments and making do's aside, we made the best of the rest of the evening and I slept well. Today had me doing for the rv afternoon and evening. Cleaning, washing, cleaning, washing, figuring out solutions to problems and reading blogs on Toyota Rv's. We began talking about routes, stops, time tables, desires, needs and possible resolutions. The conversation will continue. Meanwhile, I also got to talk and sing with Chloe on the phone this evening. Our bond is incredible. I have sung to her since she was a baby. Now, she sings, I sing...and when it is time for goodbye, she is too sensitive and has endured too much of that in her young life that she doesn't like to go there. So, when she would not say goodbye, I began to sing....♪♪ looovvveeee youuuuuuuuu ♪♪♫ and she sang loveeeee youuuuuu, Nana ♪♪♫ and back and forth this went.
All the sadness, discomforts and questions in my life are erased when I feel the bond with that small child who shares my blood, disposition, likes and more. I cannot wait to see her...and to hold her close.
I'm getting closer to taking the PET/CT scans (pushed off till next month when it will be three months post chemo!!), and thereafter will have confirmation I remain cancer free...I daily move further from the cancer patient identity.
I am grateful, deep down, strong and long, for so many of my friends and the role they had in my road to wellness. Frequent, thoughtful contact, cards, donations, visits, rides, drop-offs, phone calls, messages...you know who you are...and if you provided support, you can bet that I have not forgotten. Be kind and thoughtful to yourself, too, child of the universe...your kindnesses live on as gratitude and joy with a fantastic outcome.
Sunday, July 7, 2013
...currently...
I took the time today to follow the link from my email to the Hematology Oncology website and to my lab results. The blood work had been off in many ways last time. The sixth chemo had furthered the off-balancedness, for lack of better words. Today I referenced the letters and at least had a better sense of what is still off. Several things are still off, the easiest to recall are the white blood count and the red blood count, both off, but closer to being within the normal range than last time. It is a process and I now realize that I need to remember I am vulnerable to infection and need to take better care, be more aware as I carry forth each day. I have a mess of a garage floor to handle and a host of items to go through in my basement. And then there's...and ...and...yeah, it is starting to feel overwhelming the number of projects and repairs on my plate...waiting to happen.
I'm glad I digested where I am at...so that I stay true to my own self-respect and take good care of myself. Today, after reading my labs and also reading about my blood type and foods best suited to me, I made a point of hunkering down. I feel it necessary to eliminate wheat at this point and perhaps it will become a new norm. I read that I am especially vulnerable to inflammation when eating wheat and it rings as truth. Dang. On the other hand, eating 12 ounces of spinach today no doubt was good for my body. I need to hydrate up and keep the veggies going in and little sweetness, be it melon or carrots. It's time to feel my dieting is back on track, at least I hope that is true. As I write this and recall my chemo nurse's voice, I feel less sure. I think she told me to wait a couple of months to begin to lose weight, but I feel ready. The weather is hot and sticky when it is not raining. I have felt inflammation for a while. Today, after not eating anything but a small piece of org. cantaloupe and then org. spinach fried in a small amount of org. coconut oil and org. onion with a small amount of grated cheese, I feel less inflamed. If this continues, it will be easy enough to make a shift to eating right for my body because I do recall how good I felt when I altered my diet strictly in November after discovering I had cancer. I deviated...and it is amazing how carb's create a desire...a craving for more.
A friend mentioned my lack of writing here, thus I wanted to write a post that describes recent changes. I will update and speak more about diet. I do strongly believe it is vital I eat healthily, vital I shed some excess weight, vital I exercise, vital I have loving, healthy relationships, vital I maintain peace of mind and sometimes it takes great reflection to do so.
I go to bed now, nearing 1 am, ready to rest well and to awaken with peace of mind and the determination to tackle an ever-growing list. Tomorrow, I shall go to the Vitamin C infusion that was scheduled because the doctor wanted me to have them through July, but I intend to be cancel the others. So...I had better be prepared to not forget to take the supplements I need, to ingest plenty of fresh organic produce, and to drink plenty of water, herbal teas, and lemon water.
Tuesday, June 25, 2013
...growing...shortening of days & patient-like feelings
I'm infusing with Vitamin C as I write. As it stands, I committed to one more dose. I did not get to interview for state DMV job, although that seemed like it was going to happen. I'm looking for agreeable part-time work, just to keep life going, but nothing yet. Meanwhile, a trip across the country is in the planning stages. I recognize myself at a crossroad, but am consciously not tripping about the work, decisions, pace or unknowns.
Life has felt rich and full lately. Although there is no question the residuals of cancer-conquer treatment are evident...visibly as wig-worn wig-wearing and drawn on brows, if I want to sport brows. In the humid heat, my wig is an irritant at best. I leave it on for others' comfort, certainly not my own. The mirror is a smack-like reminder of what I've just gone through, but otherwise, the chapter is drawing to a close...because I feel and think as a patient less and less.
As for my head, once fully bald without any traces of hair, it is now covered in a soft, fledgling-like downy soft, mostly light grayish hair, the likes of which I have never seen. There is also a dark, coarse hair stubble coming in. I see more of each daily and am excited beyond belief. And although two weeks after chemo six I lost almost all of my eyebrows and lashes, the brows are now growing in! I will update about this. For those of us who have been chosen to get on the well-side to cancer, hair return is a significant component. I am eager, however, as has been the case with each step of cancer treatment, cancer coping, the opportunity to enhance one's patience is intrinsic. Wow...just checked my arms and I see that they too are growing hair. Praise be!
In this getting-past-treatment portion of overcoming Stage IV Ovarian Cancer, I feel increased stamina and a mind going full-tilt-boogie with ideas. Is this the consequence of laying through post-chemos? I seem to be robustly wanting to do summerish doings like a thirsty horse!
I'm also spending at least an hour a day researching health, the scientific data on gmo's, where to get clean food (not really as easy as one might hope given the lax laws and corporate trends to please the growing demand for organic foods in a probably deceptive way). I spoke at length w a local truly organic farmer yesterday and learned quite a bit. For those who can, it is certainly safest to buy from a known organic farmer than to rely on corporate stores...who are putting out organic spring mix in plastic boxes and the stuff lasts weeks...which scares me. The topic of food as what we feed our bodies, our selves, is intuitively a top-of-the-list topic. The list of diseases that are becoming more and more common grows while animal-testing of animals fed GMO foods is showing, with statistical significance, that inflammation of intestines and bowels results in these poor animals. If one stops to think of inflammation-caused human diseases that are root-caused by diet....well, for me personally, ignorance is shrinking, awareness is up, and recognizing the importance of due-diligence is paramount. So, after I leave my infusion, it's to the local small-guy natural grocer with a wealth of knowledge as a bonus, for some food for health, with peace of mind. This topic, clean food and it's role in health and well-being, shall be expanded on in a future post. To say I feel strongly is not an overstatement. I know with my gut, brain and being that ignorance does not lead to bliss when it comes down to the nitty-gritty.
I get to live on....without cancer infesting and consuming me. I take it both seriously, as in with responsibility, and lightly, as in with light and love and glee blazing the trail of decisions on a given day. Make it a blessed day, full of gratitude...that is what I shall be doing!
Thursday, June 13, 2013
Realizations
I have not written lately which may be correctly interpreted as I have felt better and better and gotten out more and more. I felt such an improvement in stamina after the Vitamin C infusion of May 31 that it made me more certain than ever that it has helped me a lot during this journey to the other side of cancer. I have researched and decided on an organic food based oral vitamin c with probiotics and many mushroom extracts I had read much favorable data about. I found a great price and ordered myself what is needed to keep a high level of antioxidant C in my body. My job for the rest of my life is to eat healthily and to treat my body as I truly believe it should be treated...the place I get to reside in if I keep it healthy enough. I'm eating sprouted chia powder seeds in yogurt or salad or something daily. I love various sprouts and enjoy those, organic greens, no sugar...alkaline fruits...and as consecutive days of clean, healthy eating have built up, I notice I feel better. When situations force deviation, I do not feel as well. The more I have read, the more evidence I have learned of pointing to diet and it's role in health. So, so many diseases that are becoming statistically normal can be caused by poor diet...a typical American diet...laden with processed, gmo-grown, pesticide ridden foods, laced with "vitamin" fortification that is as good as a myth, and I find it haneous that standard doctors do not often advise patients to change their diet radically to overcome obstacles.
I am now paying attention to a lot more with my body, and to such things as my nose running. Without nose hairs, any fluid runs quickly down and out...just reality for now. Yesterday, the car I was in stopped in a parking lot and my nose began to run like a faucet. My friend asked if it was allergies, and I did not know what to say, since I have no allergies. But, as we walked away from the fresh pavement, the running stopped and I realized, the fresh tar with it's petrochemical emissions was the culprit. My body has been broken down and it is in the slow process of being rebuilt. I am certain that being in the most healthy environment possible is what I need. And I crave it.
One of my favorite days in a long while happened last week when I walked to Great Gully Falls...down the creek bed, no noises but nature...and the chill of the water in between my toes, which eventually did not feel chilly. I felt so in tune and in love with life. And love filled my being to my core. I remain grateful for such spots. It has been no secret to anyone who knows me that I yearn for the countryside in California from time to time, particularly so when I was coping with chemo. I also like summers here, when they feel like summer. The long days are always appreciated, but of course, warmth and sunshine after brutal winters are what create some sense of balance. And so far, this summer season is off to a wet and not very sunny start. Last June, in contrast, was full of warmth and sunshine and I was out enjoying. I hope that the rain will subside and a summer that allows outdoor adventure will emerge. Solstice is coming up and I always get out in nature to honor the day and life. My vision has been to canoe...we shall see.
We shall see is the new mantra. I have so many wondrous ideas...the spirit of adventure is alive in me as is a robust zest for life and living it to the fullest. The importance of love and nurturing are so strong and so greatly appreciated. I have been fortunate enough to experience these two vital aspects of life for many months now. Facing emptiness...a void of such again for any period of time seems too much to ask of my soul. I have learned a lot in the past 24 hours and have thought deeply. I have faced my fears, my demons, my desires, my necessities...and believe the crossroad I am at to be one of the most important ever. I am working slowly at the list that grows as I check things off. I remember several times daily: I get to live!!!! I have successfully gone and grown through chemo treatment after debulking surgery and am now free of the ovarian cancer that had run rampant in my peritoneal area. But I embraced it, I did not fear...I fully and wholeheartedly believed I would achieve cancer-free status and I also believed that my angel person, whose love lifted me past many obstacles in the recent past, would be with me to enjoy life after the lingering aspects of chemo subsided. Shared visions and goals...can not be assumed, though. It is a giant gift when love is cherished by each who feel it and held in a place of paramount importance. No matter what, I must go forward and care for myself. I know what I want most. Most. I have come to see love as the most important thing in one's life...and wise, informed and heart-felt choices must accompany for a full rich life. I want a full rich life. I will work hard to contribute to my dream of such. That is a dream I shall not drop...and yet there is a balance between being in the now, having healthy dreams, being wedded to such, being flexible, patient and empathetic. I seek to maintain balance daily. Now is all there is...and dreams matter. Wow.
What going through the challenges of a Stage IV Ovarian cancer discovery through the process of ridding my body of it does to one's being is profound. Beyond words. I try to put words to the ways in which I feel differently about life, about going after what one knows to intensify joy, to maintain the vital things in life after facing death head-on...maybe for those who have not had such an opportunity it is not possible to understand. And there may be no universals on that...maybe each survivor after near death is changed in a different fashion, but I believe it likely all are changed. I am not done with the after effects of cancer and do not yet feel settled in spirit. Perhaps the process is lifelong...perhaps I am about to make a break-through....I hope for enhanced strength through difficulties that continue to plague...
It is times like this the serenity prayer feels so guiding...I seek the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.
Monday, June 3, 2013
Monday already!
Friday, May 31, 2013
Sunrise...again
Last night, well, this morning, when I laid in bed to sleep, I ruminated over all of the ways this chemo has effected me. I questioned myself for changing the plan to have the sixth chemo, like I could change that! I wonder, though, because I knew I was fortunate and that the cancer certainly appeared to be gone some time ago and that my body was not experiencing the numerous side effects that they question me about each time I am seen in the infusion room - weekly. I figure, and this morning's reading would support this, that Vitamin C infusions have helped me tremendously with that. But, the sixth round just brought my body down. Again, no good can come of second guessing that which is done, except for if I can provide my info and someone else can then use it as when making his or her own decisions. Simply put, I believe that this decision was driven by fear. Dr. Cunningham felt very strongly, and made it clear, her recommendation was to have the sixth. I gave her opinion platinum status. So, now my body has more work to do than before and it may equate to an additional six weeks on the healing front; the time between fifth and sixth chemo's and that time added to overall healing. A body broken down (not to be mistaken as me in an evident weakened, frail state) and the notion that there's no way cancer can be alive in there...that's where I believe I am at.
Emotional difficulties and their toll on health has been on my mind. I wonder what the heck I am doing getting stressed out now. It is not a good idea on any level. I know that. But, it has been my reality for the past several days. No matter how I reasoned with myself, there has been a gut level feeling that something is off, for lack of better words. At this point, I believe I am getting a better grasp on it. But getting adequate rest, feeling at peace within, and having enough social interaction are all important pieces to wellness. Get with it, self! I believe I am ready to start getting out interacting a bit more and hope to steadily increase my recreation.
Today I shall ask Dr. Puc about detoxing, I will also discuss a few different sensations I have felt, Vitamin C, hair regrowth (it seems I have stubble coming in all over my head now) expectations, my CA 125 number, ...oh good, I'm falling asleep and will shut this down to gain another two hours of rest which will bring me up to six hours, if I succeed. More later.
Thursday, May 30, 2013
Happiness...progress...working through difficulties
I am pleased to have helped two large flies move on and out of my home forever after they buzzed me while I gazed at the project below. My front yard needs work that I would enjoy doing: weeding, trimming, sweeping of steps, spreading new grass seed...Current thoughts are: after breakfast. And then the bath and then the call to Best Buy and the subsequent drive over for computer battery service. I thought this, realized the huge progress this represented, got really happy and decided to come sit and write it. I am feeling alive today. The list means I feel able to do those things and that means...forward movement toward wellness - of mind, body, spirit.
I'll say more later: it's breakfast time! Spinach with garlic, scrambled eggs and cheese with salsa...here I come.
It's hours later. I did go out and pull weeds, and trimmed with long sheers - edge grass that wasn't mowed and small limbs on a pine tree. All green matter is piled on the street for pick up. I worked up a big sweat and kept it going one hour. It was a really big deal. I felt good doing something constructive and the sweating must have been releasing toxins. My nose was also pouring out liquid. The bottom line is I accomplished and felt good for it and about it. It looks better. Later in the day as it misted for a few minutes, I went out and spread the grass seed.
I had two important business phone calls, each with some problems to tackle, and each was successful! A new battery is being shipped to me and thus I did not have to drive anywhere. Tomorrow, when I go to my doctor's appointment and Vitamin C infusion, I will drive for the first time in eight days.
I think of myself as on the upswing now, but the truth is last night I had a problem with my left ear that is hard to explain. It went kind of numb. Right now my right foot is doing the same. These are new feelings for me, although each time they ask me at the infusion room if either of these things has happened. Until now, I could say no. I have been lucky. And, I think I still am for lots of reasons. But, things are no where near normal. And normal...that funny word, is likely gonna be different, too.
I have reflected about so much this week, including how I turn to blog during times I feel utterly lonely. I am curious how others have felt while undertaking a huge physical challenge, or more specifically, while going through an intense chapter full of obstacles that is designed to save your life. I have admitted to myself and all readers here that I get very lonely while getting through the chemo aftermath. I accept that and bet it is fairly typical for those who, like it or not, are living alone and facing it predominantly alone with help as it can come. That struggle is more emotional. My moon is in Pisces, too. So I blog and think and blog when going through the tough parts. I write freely and I often do not edit. This week was tougher than any other chemo week. I wrote more often and sometimes, as the day went on, I re-read and edited, or one day this week, I erased a post. It was negative. I was struggling and I was not comfortable reading what I had written. This week, a couple of my friends have sent a little note and let me know they like to read my blog; I still hope some strangers who face ovarian cancer read it. If it is self-therapeutic, too, maybe that is a bonus. Am I digressing here? I want to clarify that when one is going through a very intense chapter like this has been and is, there are periods of confusion, the loneliness factor, the times of self-pity (yes, really), and the unmet needs that feel painful and they likely all come out in the musings.
Sometimes others see things in us we are blind to and visa versa. We are fortunate that as friends, we can provide one another insights. I am blessed with a wealth of close friendships: connections that are deep and timeless. I welcome input from anyone inclined to speak it. I pray to be open to hearing truths when they are presented to me, no matter how difficult. And I pray that I rest well tonight.
Wednesday, May 29, 2013
One week after the last chemo...
Yesterday it misted and I went out and mowed. I surprised myself in that although there were some near mishaps on the wet ground, I got the whole job done. Hooray! I am readying myself to get out there and repair the broken gate I discovered. I think it will be relatively easy to do and having a broken gate hanging wrong is not good. That will be my accomplishment of the day if I don't then get the energy to get in the car for the first time since last Thursday and drive to Best Buy where my computer warranty is ending tomorrow and they will give me a new battery before that deadline comes and goes. If not today, tomorrow.
Pushing myself is probably a good thing. I still feel like food is not very appealing and I still work to overcome nausea. It may take a few more days...but I'll get past it. And the fact I have shrunken my stomach and am eating mindfully and healthily is just the way it has to be. I have plans to take the 12" broken grill I have, remove the gas parts, then build a small fire in it, let it burn to coals and be able to cook a burger for myself by Friday.
I share these little things because they are rather big in their own ways. To want something to eat and not really have a way to get it is not generally how we operate. But when I see light at the end of a frustrating tunnel, a way to get something done for myself, or to overcome an obstacle, it is empowering.
I continue to think, sometimes too much. I have felt a gamut of emotions being here alone. Some realizations have left me quite sad. But the truth is, sadness has a place as one grows in life. Letting tears flow is healthy. The pattern of blaming myself for being naive or foolish is ending. I forgive myself for mistakes, and recognize that some of the hurtful things that are making me sad are just reminders that my needs are not met. That knowledge will help me to shape decisions.
Ok...good news. I went out to repair the fence. It was far more difficult than I initially thought because it was really tweeked. It's about lifing the chainlink, metal framed gate and getting it squared. It was heavier than it was last time I tried to lift it. I had to pound, with the flat head of a hatchet, on the metal pin holders...one had to come down and one up, only I didn't realize that at first. Oh I want to go on, because it was another one of those cool accomplishments. I was sweating and upset, but I simply kept at it. I had to angle one of the pin holders (not at all the right term) to match the angle of the other one and that is what finally led to getting it squared. It seems likely it had been pounced at to get it to the tweeked angle it was at. It is squarely hung and a done necessary on my list. It is extra exciting because as soon as I got inside, after walking out to get the mail and finding another project piece, the new interior handle to my car, it began to rain...and then it began to pour. It looked like a hurricane kind of front...really, really strong. It made me laugh as I thought about the time in Austin, TX, back in 1979, when it poured like this and I thought it was raining hard enough to shower outside. I got wet, lathered up, shampooed....and then discovered that actually, a shower has more force behind it than a central Texas downpour. I had long hair and it was impossible to get the shampoo rinsed. Life: full of trials and errors and experiences...that we remember and relive at our own whims.
So that concludes my extended version of life with cancer. I do not feel able to go to Best Buy. That can be tomorrow's accomplishment.
Cheers to another day...one a little better than the last one.
Tuesday, May 28, 2013
...fear...not!
This morning, I got at some phonecalls involving bills and such. I also called the yoga for chemo patients course instructor. We spoke at length because as it turns out, the sessions offered are about to end and there will be no new course until September! Sad. I put off going until I felt better, frankly because adding another drive or two to Camillus during each week felt like too much. Well, the option to do so will be gone after June 4th. So, I do hope to make it to one or two of the classes before they conclude. The instructor told me about an exercise class that I may wish to learn more about, and I shall today. She also spoke to me about how long I might expect the chemo to remain in me...or how long til it is completely gone. Her literature states that if I had chemo over the course of 18 weeks, which is the case, it may take that many weeks until I am free of it. Ok. A concrete notion to contend with. I know myself to be strong and tenacious. I hope to feel it out of me via diet and detoxing, but I need to learn more about these this week.
Back to fear. I am strongly aware of the fact that fear stops people from living with vitality. Thinking ahead and fearing a shortage, for example, provokes people to say no to wondrous opportunities for joy. After facing death's doorstep head on, I am not willing to be a fear-based thinker. Amen. I realize it will try to gain footage, but I hope my brain and experiences and wisdom will prevent it - fear - from having much of an impact on decisions. I have always made practical decisions and like that about myself. I do not lean toward extravagance nor do I base my identity on obvious status symbols. My accomplishments and ability to retain spiritual lessons have far more bearing on my life and choices. With that said, the accomplishments do not necessarily fall into the same categories as most folks do. I will add that the accomplishment of bravely going through all that I have to be ovarian cancer free constitutes one of the best I have ever encountered or endured. Now to take my worn down body and rebuild it, lovingly, and to determine what is the best next on my life agenda is where I am at.
I have been having a strong, strong draw to go see the places in nature that I am aware of and have wanted to see. These are largely in National Parks. I have given serious thought to selling my house and buying a small, older Toyota RV that will allow me to travel with Trooper, who after all, is part of my life. He adds work, but I committed to him years ago. I could take a block of time, unbeknownst and non-rigid, and allow myself to see that which will nourish my soul. I am not fearful of my ability to do so alone, although that is not at all my preference. But today, here and now, my preference is in embracing the fact I got the chance to live on. I know that the ability to do some of the things I want to is finite, for it is dictated by years of age and physical conditions. And physical conditions are effected by weather, for example. I know that the harsh central New York winters hurt my body. So that is on my mind. I want to honor myself and dreams...but there is more to this whole dilemma.
I'm about to call for a job interview here....I tested quite well a long time ago, over a year and a half, for two different civil servant positions. I have been canvassed for one opportunity. I will go give it my best. But the truth appears to be ageism in hiring is an unspoken aspect to contend with. So, I can go give it my best, and accept the outcome may be no offer of work. I thank the spirits I feel talented enough to go get myself to a place I want to stay and to then find my niche...my way to earn a living. I intend to go back to mediation, which allows me to help others to help themselves. I have other job possibilities in my old home region on the Northcoast. I have been trying to land employment here in some structured and secure environment to no avail for too long. Clearly there are reasons for me to still be here and getting great cancer treatment is one of them, but I simply cannot sit here without work any longer. Once well enough, something must give. And that give may force me to become braver in many ways.
My heart and mind know what my truths are...what matters most. I have had plenty of time to devote to contemplating such things while undergoing chemo and the aftermath of it's ability to kill off cancer. I am truly worn down now, weaker than perhaps ever physically, but mentally, I am ready to make my dreams come true.
With that said, fear can rest it's cap, for it has shaded me far too long. I now know what it feels like to get over it...to push thoughts aside that are fear-based, to be at peace from within, and to dream of what I want to manifest next.
With that spirit, let me see if I do or do not have the strength to get out there and mow my property. Even if it is one section at a time. The grass is way taller than any other neighbor and I simply did not have the time to tackle the mowing last Tuesday when I was undoing the trip, and otherwise readying myself for the last chemo. So it is two weeks tall and with rain threatening, I see the importance of getting out there and at least trying. Sadly, as I look out, I see it is misting. I have to hope this will work out. And this is when my frustration gets the best of me. I had no way to do this any previous day. Today, it is a marginal possibility. But perhaps the weather is not going to allow me. I shall have to accept the limits presented with the situation.
Monday, May 27, 2013
...as Monday ends...
I have recently watched most of the 25th Anniversary of the Rock and Roll Hall of Fame Concert (2009). This is a high, high recommend event to view and catch the good vibes from. The cast and jams were stellar. I realize I need to get out and see some music as soon as possible. Music keeps me together. I have known a long while. Watching the show brought joy back into me. Post show overall feeling: much better.
It was a day that had me the recipient of kindness...a grocery delivery courtesy of Patti. Barb texted and I skyped with Lynn...today's social interactions. The day is nearing over. I hope to again get 10 or 11 hours sleep. Last night was broken up rest. I have phone business ahead for tomorrow and am hopeful I shall feel much better by morning. This is a slow recovery. Initially when chemo was discussed, it was spoken of as six chemo sessions if you can handle it. If you can handle it indicates a knowledge that you will be hitting your limit. I accept my decision to schedule the sixth round back in knowing that I was likely to have my worst chemo to date. And sure enough, it is. I hope for faster healing than is happening and then have to love myself for where I am at. I find the process still difficult, but easier than it had been. I'm getting it. There are, indeed, lessons from the journey through ovarian cancer.
Sunday, May 26, 2013
tryin' my best to roll with it...
I have looked at interesting things on the internet, fallen asleep at the computer, thought about that which there is to be grateful for (lots!) and tried to eat something that can hold my interest past being nauseous. No luck on that. The oatmeal didn't taste good to me, so I had toast with cashew butter, not much of it, but perhaps enough. I'm sipping the freshly made juice, an hour later, guess it is actually no longer freshly made, but still packed with nutrition. I would like to talk with someone...to visit. I did get to visit with my granddaughter yesterday via skype and also with my cousin and daughter on the phone. First Barb with oatmeal then Ed with beans came by yesterday morning. Those interactions helped me. I think as I struggle though pieces of the end of this journey, I need support more than I thought I would.
Maybe I'm being childish. Even so, my feelings are real. I have thought of trying to walk down to the car and driving somewhere, but am faced with the same old problem. Even if I felt strong enough to really carry that thought out, where would I go? I have no beach here. I do have the lingering memories of last week's beach moments...and I embrace these.
Anyone who reads this...feel free to call me...if you can, and you are well, come by. Visit with me. I would sincerely enjoy the company. I have no new stories, but can listen to yours....
Friday, May 24, 2013
...two days after my last chemo!
I'm realizing that I am done with chemo...I mean I am letting myself embrace this notion. It was February 5 when I began chemo treatments and on May 22, I had my last infusion of chemo. I know that the last five CA-125 readings have been in the normal range, steadily decreasing over time. I look forward to hearing what the result from Wednesday's draw is, because last I knew, it was down to 2.5!
I will always be grateful that the cancer did as I envisioned: it responded to the chemotherapy. It shriveled up and allowed me to quit being it's hostess. My aim now is to create a body that will not allow such growth ever again. Amen.
My sheets are in the dryer. I have soaked in cellular detox bath salts with the jacuzzi jets soothing my body. I am going very slow, but feel decent.
I received notice of another donation today and it truly moved me. The ramifications of the cancer and treatment are not complete; unpaid balances remain and I will likely not be able to continue with Vitamin C infusions nearly as long as is recommended. The help of those who care about me has been the thread that kept me going. I warded off fear as much as was possible and needed, because it crept up as I worried about monies. At some point I let go and it seems like one surprise after the next decent idea have kept me going. It is beyond the scope of my current mindset to put into words what I hope to one day be able to say. My mind has indeed suffered some from the chemo, or it sure seems that way. But I know that this, too, shall pass. Fuzziness will subside. I will survive, I will get by and, indeed, I will thrive.
So on that note and with gratitude to many, including myself for not failing me, I shall rest again and reflect on that which I have to be thankful for: PLENTY!
With so much love to so many...who sent positive, loving thoughts and more...those who cared for me...my, my, my how I look forward to sharing more life with you!
Wednesday, May 22, 2013
...Chemo infusion #6! (after a wonderful excursion south)
From the time Ed told me about Assateague Island, where the wild ponies live on the Atlantic's edge, I looked forward to a time we would enjoy it together. Internet research helped a lodging plan come together about a week in advance. We drove south Wednesday morning and after several toll roads through PA, the juxtaposition of the final rural roads that led to CIVA stands out. We arrived at Snug Harbor and the proprietor had steel drum & marimba music piping...it was a positive, welcoming greeting! After discussing the possibilities of renting a double kayak (the first time the wind seemed calm) and where to paddle, also where to eat, we headed into our cool, pine-walled, one bedroom cabin. It was welcoming and cozy, as is the best way to describe a double bed. The setting, calm atmosphere, and the easy vibe between us is memorable. Our dinner and first evening at Snug Harbor were great.
Thursday, I was awake earlier than Ed and got breakfast going. It seemed calm and was sunny. A nutritious, substantial breakfast would be requisite of a paddle in the bay...and after we ate and packed up beverages & lunch & snacks, a double Old Town kayak was under our butts and we were underway in Chincotegue Bay. Basia, a proprietor, upon spotting a herd of ponies in the distance revised initial paddle plan for us and with very marginal experience, but good collaborative skills, we weaved away toward the big red barn building far in the distance. We got better as we made progress, but fought a bit of a wind initially. We were proud of our first goal met: arrival on the private beach section adjacent a herd of wild horses and ponies and foals! We drank, ate, and observed. There were quite a few motorized vessels going out to the ocean, a couple in two kayaks, the shoreline, waterfowl and the horses to marvel at...and we did. A foal ran back and forth and started a little ruckus across a small channel...an egret next to a marsh behind us seemed to gaze in the water; we took it all in peacefully. When we paddled away, we went up the little channel and hung next to the ponies while they stood in the water in a herd. It was fabulous! The entire day was...and the paddle ended up encompassing 4.5 hours and between five to six miles. We became quite a good team at some point in time after the stop on the beach. It was sunny, relatively calm, and warm toward hot. We arrived back to shore tired, thirsty, sunburned and accomplished! After showering, resting under a tiki hut and enjoying some beverages, we made it out to eat a barbecue outdoor meal that was recommended and then drove out to Assateague Island and saw the Atlantic. A shoreline park back on CIVA was where we stopped to take in a gorgeous sunset. Indeed, we had a stellar day.
On Friday, we slowed our pace after such a rigorous day and after packing the car and checking out of lodging-stop-one, we explored CIVA more, including walking throughout the historical island museum, eating organic salads and sandwiches, then crossing the bridge and spending the remainder of the day exploring Assateague Island. We chose a recommended trail that made us the choice target to itty, bitty biting bugs. Suffered, especially my head. After visiting the Nation Park interpretive center, we spent the rest of the day relaxing, shell collecting and wandering into the Atlantic. I love the Oceanside and Ed! After checking into our room in a comfortable bay shore motel, we ate a fantastic dinner at a nice place and thus had another grand day and night during which memories were created along the way.
Saturday morning we awoke to rain, ate comp. breakfast provided by motel and decided to go to the NASA museum just over the causeway. We had a good time taking it all in for hours. What a well put together museum, particularly given it was feeless. We shopped together back on CIVA. Upon return to our room and showering the sand and funk of the day away, we took our trolley tokens we had gained days before and rode to eat a diner-style meal, only to re-board the trolley car to our next stop: Island Creamery, for ice cream! T'was super yummy! Next we caught the trolley for a last ride back to the motel.
Breakfast at motel, packing up room and driving off toward Silver Spring, we're how the remainder of this leg of the journey ended on Sunday. It took a long while to negotiate accidents and road work, but we made it to the Greek music concert at Lincoln Hall, nearby the Capitol, in time to see all of Karpouzi's performances. Len is an integral piece to the three piece band, as is Margaret, who I met years ago. Each set covered a different area of Greece. It was mind expanding music, with enough similarity to the Italian music I grew accustomed to, but know little of, to remind me of my maternal grandfather playing his wooden "whistle" and stomping his foot. Cool, as was driving with Lisa navigating us to her house. Lisa, her dad and stepmom, who I finally met!, and Len, began scurrying around dealing with dinner preps. Clearly they put a lot of loving energy into getting so much ready to heat up or cook on the grill. The Greek dinner was a feast that all enjoyed. I spent a little time talking w Lisa, and soon thereafter, headed upstairs to bed. Despite tiredness, it was difficult to sleep.
Monday morning was the last of the trip... Sadly missed saying goodbye to Len or Lacey who had already headed off to work. With Ed's daughter and son-in-law pending arrival to his place, he had a goal of getting home late afternoon. More strange traffic snarls made such a goal impossible, but it was what it was, a pretty drive and home to myriad chores by 7:30 pm.
Chores are always tedious when home from days away: mail of my own and mother's to sort and address, garage newspaper topped with dog poo and pee, to be cleaned up, vacuuming, meal, laundry to do, suitcases and stuff to reintegrate...and I kept at it til too exhausted. I soaked in bathtub, came out more relaxed! Got laundry going and was asleep before midnight.
Yesterday was spent further accomplishing...laundry, limited phone calls, eating, shopping for foods, meeting up with Ed and his family briefly, then home to complete laundry, prep for chemo, etc.
And here I am. Infusing away. This is it!! Unlike others I know, I had the oomph to complete entire course of treatment. And I am admittedly tired, often. The high humid heat is difficult for me. But I'm doing! I wish I was better, but am glad to be no worse. Logistics are not fully made, but I'm working on it from here, best I can. Tomorrow Vit C is at 10:30... Need a ride from my house to here & will bring car home w me at that time. I'm realizing that I should not try to drive myself home today.
I am not worrying now at the homestretch. Body is worn down, but all things considered, it could have been much worse. I'll work on nutrition and exercise to mend...and will be gleeful! Now...back to sleep, induced by Ativan.
Tuesday, May 7, 2013
...what the big boss say...or...what my path looks like now
Good foreshadowing, eh? Well, let me say more before I say more. Today went differently than I had anticipated. I got up and had a phone call and an invite to go to lay at Lake Ontario this morning. After I took a raincheck for Thursday on that notion, I went through my winter clothes and summer clothes and swapped them out. It is a job that happens twice a year here in CNY. It takes time and effort. I have a bin in my closet to store the non seasonal clothing. I got it done and then got ready to leave for my appointment to Dr. Cunningham. Earlier I had scheduled the oil change I had been stressing over for tomorrow morning. I did so online. I realized that I could drop off the car, walk over to yoga, attend yoga practice and return and pick up the car and never have to smell the nasty tire smell I dreaded for it's nausiating aspects. Good call.
As I walked out to leave I received a text asking me if I wanted to be accompanied to my appointment. I answered honestly. Ed met me in front of the building and we arrived on time. It was nice to have him to chat with in the room while we waited for the doctor to come in. When she did, it unfolded in it's own way, like appointments do. It became evident that Dr. Puc's office did not forward all info to Dr. Cunningham. I cannot make any excuses for them on that. It has been weeks since she and I met and recrafted the treatment plan so that my last chemo was my last chemo. Dr. Cunningham made it clear to me that the data for Stage IV Ovarian cancer patients and remission was based on six chemo rounds or eight...but not five. When I brought up the PET scan she seemed mildly irritated. She said she did not care what it showed because it only shows cells groups of a certain size and not smaller. I had realized early on that Dr. Puc was taking a traditional course in treating me. I learned today that Dr. Cunningham's course would have been different. For example, she said she read that the Neulastra had been discontinued due to my complaints of agonizing pain. She said she does not routinely give those shots, only when cell counts indicate a need for them because of the suffering all patients complain of. Oh. Dr. Cunningham was different in her interactions with me today than previously. She looked at Ed and spoke with Ed. She seemed comfortable that he was there. In a sense, it felt like she looked at him as what I refer to myself as in some situations: the voice of reason. She seemed to respect him. I told her that I chose to work with Dr. Puc because I made the decision I wanted Vitamin C infusions. I said that I knew that Dr. Puc is not an ovarian cancer specialist. I credited her with that title and stated that I was there for her expertise. She did not hesitate to say it in more than one way...there is no reason to stop treatment at five chemo infusions. If I want my remission to be long-standing, I should be willing to endure another treatment to give myself the best chance of that. One of the more positive things she asked and responded to was if I knew how quickly the CA 125 number went down after chemo. When I told her that after the second chemo it was down to 7.5, she showed happiness. She said that was an indicator of how well the remission might go. The fact the cancer responded quickly and died off to a normal antigen reading bodes well for my probabilities of what I want to call a cure. And that was just what Dr. Brown at Memorial Sloan-Kettering stated that day in November so long ago. She said that I had a 45-50% chance of being cured. I liked that...as did Lisa, who I'm sure remembers that too. I do not often hear the word cure in relation to ovarian cancer, in fact, Dr. Puc said there is no cure for ovarian cancer. But if remission goes on past 10 years, one might go ahead and use that word "cure." And there are plenty of people who meet that criteria.
So tomorrow, when I go in to meet the nurse, I need to reschedule my sixth and last chemo for the same day it had been, May 21. I need to ask for help now. I know Ed, who has been very helpful to me, is going to be busy with family that entire week. I have some ideas. I will have to reach out more and possibly be alone far more than I want to. But it will really be it and that should help push me past discomfort somewhat. I have no idea whether or not I will have any eyebrows left. When I look in the mirror now, I get surprised. I'm not used to how I look. But, this too shall pass. Amen.
The appointment at Dr. Cunningham involved discussion of the blood tests for ovarian and breast cancer markers, genetic testing. I have to return on June 7 and will discuss the test and give the blood that goes to one lab in Utah, I believe. That will be another thing to wait to know more about. I shall update on that as the info becomes available. I know it matters a lot to my daughter. My gut tells me it will be negative. We shall see.
As Ed and I walked out of the office, we both admitted we thought Dr. Cunningham was going to say you are not done. She was adamant about it. I was compelled to tell her again that it was her that was on the frontline as the surgeon that got me on the path and she seemed gracious about taking that gratitude, but swiftly turned it to: well then lets complete the treatment plan...
So, next on this day that unfolded unpredictably, I mentioned wanting to clean my car and Ed mentioned me coming over and next thing I knew, after stopping at a farmstand with plants, we went to Ed's house and began cleaning my trunk, then interior. It was a project. I know now why I was stressing. There was a LOT in there. All kinds of stuff. We did fill two kitchen trash bags and also created a small give away bag. A box was filled with stuff that belongs in my garage, too. And then the interior got gone through. More purging...then vacuuming. I got hot and tired in the process and took a break in the house to regroup and cool off. And now...the car is ready for one more vacuuming and the interior of the windows to be cleaned. I shall accomplish such tomorrow afternoon, after the infusion. I am very relieved that is done. After the car cleaning was completed, Ed offered to take me to eat at King David's Middle Eastern Cuisine in Fayetteville. I absolutely love a particular platter there. And they have a non-sugared green tea with pomegranate juice that we both enjoy thoroughly. Good food, a fairly quick run through TJMaxx next door, and then I dropped off Ed. On my way home, I dropped off the small bag of donations, and went through a car wash! Wow. I am stoked at how the car is going to look once the windows get clean tomorrow. Phew.
I now can look ahead to going to the island to see the wild ponies and lay next to the Atlantic. I completely look forward to kayaking around Assateague Island. We shall have some relaxation, stop and see Lisa and Len and then return with me to go to the real last chemo the next day. Perhaps I shall make it be Wednesday just so I can unpack and settle in. But either way...I will renew, come back and go through the last chemo. I can then celebrate.
I am hugely grateful for so much today. I know how much better it felt to have the support of Ed at the appointment. I was not alone. It made it all feel better. All the work we did on my car was truly we. I am so glad to be on the other side of the deep trunk cleaning. I found that there was a lot of moisture in a cubby adjacent the fuel tank. Everything I stashed in there was rotted. The plastic line running that was supposed to be attached to an end, was not. It is speculation, but there is a chance that overfill fuel got in there. I do recall times I smelled fuel, long ago. That issue is resolved. Oh my, the stuff I had hoarded in that trunk. Yikes.
I am quite tired after a very full day. Two in a row. Tomorrow promises to be a third. Bed time after a vitamin c drink I need to make. I am not on a bummer mindset. I am glad...because I really do not want to look back and regret a bad decision. Instead, I shall insurance myself out of treatment, positive I had three rounds of chemo after the antigen level went normal. And then, I get to recover fully, regrow my hair and live...with joy and love and so much more that I did not have only one short year ago. :)
Monday, May 6, 2013
Trees budded during chemo week...seems like a good omen!
Tomorrow it will be a full week since chemo. I still feel nauseous at times. I'm very vulnerable to feeling weak with heat and we have been blessed with it being up around 80 degrees for days. I laid in the sun for a little while today before tackling errands on my own. I am trying to get it together to take a trip next week that I look forward to. And I need to be with more energies than I currently have by then. Right now, just thinking about getting the car ready gets me tired. The trunk is in need of purging...the interior needs to be vacuumed, the exterior cleaned, the oil changed. And I stop there because I know the smell of the waiting room at the Mavis I use for such services stinks of tires and the smell will not sit well with me.
Back to tomorrow and what I must do: go to my appointment with Dr. Cunningham. I will listen to what she has to say. She will tell me her opinion on what should be next. Another chemo or not. It's a pretty big day. I will be alone and that is not as I wish it. I see lots of merit in having someone along during appointments that matter. For support, to listen...not to mention it being the be-all-tell-all appointment it is...those who have a significant other that always comes along to provide you support, you may not be able to even get your mind around some of the emotions I have gone through because I had no choice but to go alone to some significant appointments. To blatantly admit this does not diminish the help people have provided to me nor my appreciation for each bit of help. I'm simply painfully aware that there are gaps that seem very big to me. The truth is, it is complicated. I am confused. I want to honor myself. And I want the missing elements that matter so very much.
I have spent a bit of time thinking about the previous topic. It is essentially aloneness at times when it is best not to be alone. I have grown a lot through cancer to the point where I have asked people to help me. I made specific requests. I did not want to ask for accompaniment tomorrow, though I want it very much. Tomorrow will come and go. I will get through the appointment. I will demonstrate my independence and strength to go alone. But I know from experience that everyone else in the waiting room will be accompanied by someone who cares about them. It is the way it has always been. I need to just embrace the truths that this situation present me with and act accordingly. That is maybe what is bothering me the most.
I am getting tired. It was, in fact, a long day. To rehash, I handled a lot today. I made fresh juice out of apples, celery, carrots, ginger and kale. I then cleaned the machine. I did some internet reading. I laid in the sun, but a call came, and the chair I was on came forward, folded on me and broke. I came in and got a five check bank deposit ready. I loaded all the recyclables into the car along with the bottles with deposits. I went to the bank drive through, then Wegman's where I recycled all I had with me. I then went to TJMaxx to seek things I know I could use on the trip. I did not find any. I did get my mom a Mother's Day present. I came home. I made a salad, heated up some baked macaroni and then gave the dog his second meds of the day. After all of the above, I loaded garbage and brought it to be picked up in Liverpool. This was a day full of accomplishments. In a way, going out and about as I did was foolish. I know that it would be better not to go out in public. I think I did well to accomplish so much and not be amongst many. Wegman's redemption center is it's own room and there was one other person there part of the time. TJMaxx had almost no shoppers when I was there! So done those tasks are, but I am with a big list of more to do. And then the pesky life plans that loom. I believe I am getting closer to taking action. I have to cut myself slack knowing it will take me a while to do all that is necessary. Bravery will have to come into play. I am seriously contemplating getting into a small, older RV with Trooper and heading west...stopping and seeing the places I have wished to see. I know that it will take time to get ready for such an endeavor. The basement, the house...oh my. But on the other side of the work, I can perhaps live out a dream...
If it is a pipe dream, then it shall go up in smoke...if it gets me to truly consider what I would like to manifest...then it is a positive. Perhaps this rambling should be put aside and I should medicate and get to sleep. I have been going to bed early lately (not so tonight) and getting over eight hours sleep. I cannot get off that good track. If I have it in me, I will get the oil changed in the morning and sit outside somewhere it is shady. After Dr. Cunningham, I will know more. Wednesday, I hope to get up and go to yoga for the first time since the one time I went after surgery. It has essentially been since November that I have had a yoga practice. I look forward to how I will feel once reengaged in yoga. Wednesday afternoon I have a vitamin c infusion I will sit through, and if a mini miracle can unfold, I will see Bela Fleck that night. I know the value of live music in my life. It is one of those things that are difficult to explain. It will be a full public event...so that has kept me from committing to myself, but let's just see what Wednesday brings me for energy. Energy with the grandest definitions...
When I began posting these blogs, I had envisioned readers commenting. I have received relatively few comments. When I struggle through the difficult times, one never knows if they might have the pearl that would make it better for me, easier to cope. Insights? Bring em on! Otherwise,tomorrow night I shall post the update on whether or not I shall have to go through a sixth cycle of chemo.
Friday, May 3, 2013
Still at it...
I had what I hope to be my last chemo infusion on Tuesday, April 30. I found myself in the middle of writing a letter to handle a new crisis of my mom's while I was being infused. I usually allow myself to zonk out on the meds meant for that, but I kept trying to write an important letter whereby I was attempting to get my mom's silky terrier to be able to live in her proximity as opposed to out of the complex and with strangers. It is a long tale, too long and involved to get into, but I can happily report that despite being doped up while writing it, after some edits the letter was sent and did get the outcome hoped for. Another...phew...accomplishment.
It is Friday. I asked for and received continual care from sweet Ed through this afternoon. He handled all aspects of providing for me well. The night of chemo went remarkably well in that I had a good appetite, felt well and had unusual energy. I look back on the evening with smiles. Wednesday we slept in...and made it to the Vitamin C infusion without incident. It too went well. That evening we made a quick jaunt into a local market where there was fresh white fish from the wilds of the Alaskan Pacific. I am looking at adding good quality fish to my diet as a source of protein and thought trying the whitefish to be a good idea. Ed cooked it last night and I ate a small serving, and enjoyed it! I am in the process of learning more about diet, inflammation (a root of many autoimmune diseases) and nutrition, etc. I aim to live a healthy life and know I have more learning to do in that regard.
Today, as was the case yesterday, it really warmed up. After such a long, long cold winter that lingered into spring, it is sure nice to feel warmth! I rode the mower and got the front done today while Ed went and got more fuel. I like enjoying that my yard is looking nice. A simple accomplishment such as today's makes me feel good, although I believe I was leaning toward dehydration after the work was over and I sat and chatted with Barb. Indeed, I was blessed with a visit from Barb after she was out of work. She picked up the groceries I asked for and even helped me to cut basil and create a baked pasta dish out of the leftover pasta of a prior evening. I am now tiring out, ready to drink more fluids and get to bed. I hope to have the energy tomorrow to mow the back section of property. I will not be raking it, just sitting and mowing. I hope to get that handled and feel not behind on the yard. It sure does grow swiftly,and... it is best to not let the grass get too tall!
I will know what Dr. Cunningham believes is in my best interest on Tuesday. I shall report back regarding whether or not this weeks' chemo is the last after our consult! I also intend on getting blood sent off to be genetically tested for BRCA1 or BRCA2. These genetic tests look at susceptibility for breast and ovarian cancers and can provide helpful information to my daughter and granddaughter. I'm ready to gain whatever information is available. I am seeing light at the end of a tunnel...or an end to a trail that I have been on since November. Life is not going to ever be the same...and I have grown leaps and bounds through the processes that have unfolded. Praise be!
Wednesday, April 24, 2013
Vitamin C Infusion
Today has been one of doings on the phone. My dog, Trooper, has infections again. I've been soaking his feet in epsom salt water daily amongst other things, but with his toenails overgrown, he appears in need of antibiotics...again. Not gonna get into his health history, but it is sadly riddled with episode upon episode of problems. His phobia about getting his nails cut plays in...and since he is turning ten next month, it seems unlikely much will change. But, I will go get him a script of antibiotics and hope his pads are better by the time he goes to a new groomer for a pedicure Saturday morning.
I'm writing from a vitamin c infusion. I've lost count of how many I have had. I am certain they have played a positive role in my treatment, but will never be able to single it out. I see a transferable lesson...I cannot know precisely what brought cancer into my body. It would have killed me had I not discovered it via pain...and sought high quality treatment. Now I know the cancer has responded to treatment, but cannot know to what degree the components have led to that outcome. I know I have been the recipient of a great many prayers and well-wishes. I have also paid $200 for each weekly high dose vitamin c infusion. I have taken many supplements known to be helpful. And of course, I have had infusions of Chemo every three weeks. Meanwhile, I have been as positive and faithful as possible daily. There is no way to measure the percentage each component has had in the outcome. And in life, there is no way to measure roles in life and their outcomes, either.
The clouds are thickening outside. I have seen a very large bird of prey in the distance. I am about 40 minutes from being done. My next infusion, next Tuesday, is the last chemo!!! I feel ready. Thereafter I shall get vitamin c at least a month before saying goodby to a long drive to the Community General branch of Hematology Oncology. I have been devoted to myself and my treatment with the goal of living and carrying forth some of my dreams. I am thinking about such dreams now and imaging making them so. I see more joy ahead. And the gratitude I feel pools up and flows as tears from time to time.
Tuesday, April 23, 2013
Wee hour wake ups, time to wonder
Make that yesterday, for it is an early am wake up session I find myself writing from within. For the third morning in a row, I awoke at approximately 4:20 am. I find no humor in it. This time I got up to see if I could see any of the meteor shower. Given how easily I get cold, this was a well thought out decision. In other words, I laid in bed thinking about the pros and cons before I actually made it out of bed. I wrapped a scarf around my neck and hat and slipped on my leather coat. I didn't use lighting in the house. I went onto the deck and stood there until I finally saw one. My conclusion is there was already too much light in the sky from the dawning of the day and from the suburban location I am in. Shucks. But, I did see one long streamer of a shooting star.
The sun has since risen. I will tire myself back to sleep. I have been getting ample rest, albeit broken up with this wee hour wake up. I have no idea if chemo has impacted my sleep pattern. I have been able to blame it for a few other symptoms. My stamina is down, for example. I accept it and plan for it's growth. I was laying here thinking about taping my handlebars and riding my bike. Even if I have to get off and push it up the hills for a week, I will be able to climb again. I know that I get a great feeling of freedom on my bike and hope to use it as a great means out of what feels like lethargy. I also think about how happy I will be to begin yoga again as a regular attendee. I know how quickly I will regain the good that comes from yoga. I tried to go back to practice only one time since beginning chemo. I was happy with my practice that day, although I could no longer keep up. But I went on to cut my thumb and that took me right out of yoga. With my life so focused around chemo, I made the conscious decision to wait to go until I could go regularly and that will be very soon.
I look ahead to next week now in a different way. I spent some time redoing part of my cancer circle calender last night. I think few look at it, perhaps fewer than read this blog. My strong desire is to end this chapter of chemo with ample help. I know what a difference it makes to be able to ask for a drink, to know the dog is fed, to have food brought to my bedside. And I want to feel like this time, I will be able to be as I was the first chemo round: cared for. I am unsure the calender has been that useful a tool. It feels contrived. Those closest to me should not have to sign in and sign up to come and help me through my tough time. I'm obviously unclear on how it feels to be others. I only know that this has been my biggest time of need in my life. I do not feel I have done well at asking for help. There have been offers that have not manifested into action, people sometimes called when I was asleep and then one thing led to another and I did not return the calls, there have been people who have called on a day I feel a bit better and I do not chose to trouble them into showing up, sometimes, in part, because I do not know them well at all and feel funny about it, and there have been days I hoped someone would call and show up, but I have laid alone. The post chemo times have been those I have fallen to tears the most.
Anticipation about next week is high. The last chemo. This feels big. I know it will be an impacting one in many ways. It is the send off of the chapter I have been in since November.
I am tiring. I will be able to get back to sleep for a few hours. I hope the sunny warm day ahead is filled with joy. I have a few key things scheduled...and one is an outdoor adventure in the sunshine. I know that the many questions that fill my head and are likely behind these wake up sessions need to be put forth on the table of discussion with those who are intertwined in my life. I have been really trying on the notion of setting the way back machine up and embracing a nomadic lifestyle for a while. A year of traveling around, visiting old friends, seeing beautiful places I have wanted to see, living with eyes open wide, taking in newness...feels like the right step to take...and tbr feels like the only way to end this and get back to sleep.
Wednesday, April 17, 2013
BIG BEST-CASE-SCENARIO NEWS!
It went into details about the tumors of late January, their sizes and in each case the sentence ended in "no longer present." There were tumors on the colon, spleen, liver and abdominal area seven weeks after surgery. Now, I am essentially cancer free. But, there is a chance there are microscopic bits and that is why I will do one more round of chemo. Insurance of sorts.
Dr. Puc and I discussed what to do next. She said typically after a PET result like mine, which she went on to say is not all that common with Stage IV cancer, they would recommend two more rounds of chemo. I brought up the fact that my CA-125 number was in normal range after the second chemo, and that had we done a PET sooner, the results would likely have been the same. Therefore, I wondered if we could safely conclude I have done at least one more round already. I asked the doctor if she would put herself in my shoes and tell me what she would do if she were me, and I pointed out that this round is still effecting me over a week later and the next is likely to be worse. She said if she were me, she would do one more round. She also said she would scale the round back 10%. So that is the plan. My last chemo is April 30. I will then continue with Vitamin C into May as can be afforded.
I asked about getting the port removed. She said no. She said that will stay in...and seemed to indicate it may need to be used again. The thing that I know to be noteworthy in my situation is that Dr. Puc is not a gynecological cancer specialist. She is an integrative oncologist, which is what I wanted. She has consistently looked at the whole picture and again today pointed out how my positive attitude has been vital. Dr. Puc seems delighted and surprised at my outcome, but my surgeon who is an ovarian cancer specialist stated she would be very surprised if I were not in remission after treatment. Dr. Brown at Memorial Sloan Kettering Cancer Center, another ovarian cancer specialist, said that ovarian cancer responds very well to the two-chemo-combo I have now completed four rounds of. Knowing these experts had stated this to me, I truly always believed the cancer would respond to treatment. Back to the port...I'm ok leaving it for a while. They will be drawing blood monthly to check the CA-125 markers. The port simplifies blood draws. But, I believe, whole-heartedly that I will not need it for further chemo treatments. I am not gonna let cancer get back in me. My body is not gonna be a hostess anymore. That's me taking a stand, just like I took one to embrace therapy and to do so with as much grace as possible. I will admit, I cried more than I thought I would, given I really went into this knowing the importance of positivity. I cried when I felt unable to do for me and like I had to ask and hope for what would have seemed to me at the time to have been karmic-turnabout to have just received what I needed. I cried over agonizing bone pain, I cried over simple misunderstandings, I cried feeling woe is me. But, it sure wasn't the majority of the time or anything close to that. So, I cut myself slack and wonder if just about anyone might have cried that much anyhow.
But...whooooo-hooo...I am grateful and happy and thinking about how I would like to start making some plans about what is next!
Tuesday, April 16, 2013
PET scan & CT scan with contrast
This morning I was up earlier than necessary. I slept ok, but not quite long enough. I readied for the appointment by dressing and getting the dog fresh water, scrubbing his food bowl and filling it. I drank some San Pellegrino water, too. Ricky and Ann Marie picked me up at the scheduled time. They dropped me off. I filled out forms designed to protect the imaging center and completed the intake process with a band around my right wrist identifying me.
When I was called, I noted an oddity that I couldn't quite identify about the woman who came. She was callous in her mannerisms. She did not inspire confidence, and I hoped she would not be the one who would be dealing with me. But she was. She informed me that I would not be accessed through the port and cited the radioactive material would stick to the tubing in me. I said, "Oh, No thank you!" and she said I was funny. Hmm...that was not even designed to be a funny comment.
When she tightened the tourniquet on my arm I silently asked that it go well, Well, she missed. She poked around with the needle and as she did so, it hurt. I winced. She apologized, and tried probing around from within again, to no avail. I made a moaning "owww" sound and she screamed out a colleagues name. When the woman arrived at the door, she asked "is she giving you a hard time?" referring to me and the bruiser said "yes"...talk about displacing your incompetences...victimizing the victim...right about then, as she continued to probe sideways from within, she said "I got it!" and she had. Next, and quickly, she inserted a tube of saline and pushed it through and not long thereafter she was screwing a tube of yellow substance into the end of the line in me and as she screwed, she was again hurting me. At this point, I was beginning to sob. I wish the process did not put me through pain. But, it did, It was. And is seemed prolonged. Her attitude and demeanor were not at all helpful.
As soon as she had inserted a total of three tubes of materials, at least some of which were radioactive material designed to leach out of me all day, she escorted me to a restroom. After I peed, she escorted me into a room darkened and instructed me to sit down. I was sobbing again, her very presence was difficult for me. She pushed the recliner back and asked if I wanted a warm blanket. No brainer..."yes, please"...and as soon as the blanket was on me, she said, see you in an hour and shut the door.
At first I felt the sensations in me. It is odd. You do feel an effect as the fluid mixes in your body chemistry. I used a tissue, finished sobbing and put it down. I closed my eyes. I began to doze. I dozed in and out, with some dreams I cannot recall occurring and ending in a daze. At the point it had been an hour, another woman came and asked me to come with her.
I walked across the hall and as instructed, I laid upon the table, I put my hands above my head as she asked, careful not to catch the taped on IV on anything. After I was as she had asked me to be, she asked if my bra had any metal in it. I thought. No underwire...but oh...wait, yes the hooks are metal. She told me that for the CAT scan, there could be no metal and asked that I remove the bra. It turned out to be tricky to do so with a shirt and sweater on and the taped IV. So, I had to removed the sweater, which was deemd to have a small amount of metal on a button, part of the shirt, and finally the bra. The woman took the sweater and bra. It was then time to get repositioned. A prescan confirmed whatever was necessary to confirm and then the woman had me hold my arm with the IV up in a very uncomfortable way while she went and got someone else. That made little sense, but I complied. As she walked away I began to question the strangeness of the entire appointment the entire time. But, very soon she was back and screwing a tube of contrast material into my IV and then she told me to hold very still and be ready to go into the machine. She said to let her know if it hurt while going in and then began the process of injecting it into the IV. I began to feel the sensations I have had before during a CT scan...the feeling like I am wetting myself, the warm sensations and other sensations within. I'm unsure how many minutes it took, but in a relatively short amount of time, the scan was concluded.
She removed the tubing that was linked to a machine that inserted a prescribed dose. I was free of that and ready for the PET scan. That simply involved hands over head and complete stillness. I was getting very chilly, but knew to go with the flow. Still I was. And it took about 15 minutes of stillness while the gurney I rested on shifted up and down the track and into the machine where various noises were occurring.
When enough imagery was gathered, she instructed me to sit up and next to stand up. She handed me my bra, sweater, water and she brought purse and jacket to the bathroom where I dressed. I walked to the waiting room where my sister was sitting. We exited and Ricky picked us up as we exited to the sidewalk. We talked some enroute to my house. I am glad to have the scans over.
I think my tolerance for getting hurt by others while doing all that is required to become cancer free is down considerably. It used to be easier when such things happened. I am raw now. Vulnerably raw. I am paying a price in many ways to get on the other side of cancer. And, of course, it is worth it.
For a moment I wandered to the distant Pacific Ocean. I just got a pic from the SF shore on my phone. Ah. I tell myself, "you will go to the oceanside one day in the not too distant future. Perhaps the Atlantic sooner. I shall rejoice.