Monday thoughts...

Another day...and the sun was out. I got a return call from the acupuncturist who I hope can set herself up to be a Cancer Connects provider. I highly respect Caroline's work and have been thinking that I need to see her. As it gets tougher, I turn to the resources I have access to. I received two vouchers for acupuncturist treatment. Of the two providers on the list, one was no longer in business. Thus I got active and tried to see if the provider I know might be willing to be on the list to accept clients at the reduced fee. And, she is! Caroline is going to call the person whose name I gave her and give the relevant info to become a provider who can accept the vouchers. I hope the process is not too grand and that I will be able to get one of my treatments sometime in the next month.

I addition, I finally spoke up about the nurse whose port accessing has left me hurting. I sent an email to my nurse and heard back via phonecall. I will no longer have to deal with the nurse. I feel relieved. I still hurt and it is very black and blue.

I also called about a medical bill and discovered that even if that provider has billed and received compensation from my insurance for other such services, they do not necessarily put the two together. So I had the full bill and have now given them insurance info (they already had). This will no longer be in my "medical bills" folder.

I am now in prep for the PET scan mode. I will soon eat my delicious organic salad with cheese and vinegar and oil. I can have no carbs at all until after the scan. I will be drinking water only. And, Patti and I spoke and she went to buy me some water. I will be radioactive tomorrow and will need to drink plenty of water to flush it out of me. I cannot even fret over such matters. I have to do it...so I do. I will write more about the PET scan tomorrow.

It has been a day of talking to those who matter and are far away. I spoke to Candice as she drove from Marin to Highway One near Pacifica. I went over the Golden Gate with her, learned of current tolls and more. It was wonderful, in its way, to know where she was as she made her way to her appointment, and to feel I was there in a sense.

Next I spoke at length to Dawn. She provided good insight to me...she knows me well and knows the things I struggle with. We went over a few deep topics...and here it is hours later and in Boston, there has been a tragic bombing event with casualties. Her oldest daughter is a nurse there and is on the volunteer list at MGH. Amazing how swiftly in life something unexpected can happen and life can be different thereafter. Many will have that as their reality post tragedy. I think of such things on a daily basis. Not tragedies, per se, but just sudden shifts that mean that what you were comfortable with no longer is. Argh. Like you just don't know when you say goodbye to someone if you will or will not see them again. Fascinating and true. Difficult yet part of living.

Later, I spoke to Ed, who is in my favorite city, The City by the Bay. Some of today's realizations have left me sad and confused. My attention has gone to choices and timing in life. And how when two people are involved with another, in a caring, loving, sharing way, the actions of one will effect the other, whether intended or not. It is respectful to understand that when you are close, your actions effect the other and to seek feedback in order to circumvent hurtful impacts when they are at all foreseeable. Giving someone who will be impacted by your choices a chance to express their feelings confirms that they matter.

This is clearly a time like no other. I have a lot of time to reflect, self-reflect and to come to terms with my own needs and desires. Often, I do so while enduring pain and discomfort. I painfully feel what is lacking, while purposefully focusing on the positive and the gifts. I am grateful daily, with good reason.

It's time for salad and to go get my water and ready for tomorrow. I expect that I will be done with the scan series and home by noon. I will be cleansing with water all day. And the next day will be a big day....I will go into my appointment with Dr. Puc, alone, to find out what I expect to be good news. And I need to figure out why being alone has become so difficult while going through the chapter of gaining access to more life.

Sunday...after I slept well...the sun came out today...

Last night Patti came over. It was a great visit. I felt lousy. Really. After her arrival, we jointly heated some pecans in a skillet, added organic apples and cinnamon and closed the lid...let it bake. I took ill in the middle of the yummy idea and had to go sit down. The result was the realization that taking an anti nausea med, something for the joint pain which had become agonizing, and ativan to be able to rest was the best thing to do to ensure a good nights rest. After I took all of the above, with some encouragement from Patti, I got ready for bed. And Patti tucked me in. Being tucked into my bed is one of my favorite things, especially when I don't feel well. I got tucked in and Patti locked the door on her way out. I don't think it took long to fall asleep. And I only got up once to pee. Beyond that, I slept several hours. The start of a turn-around, I think.

When I got up, I opened curtains and a peek of sun was out. It went away. But some hours later, it came out. I didn't feel well enough to go out and walk as I had wanted, but I think that may be possible tomorrow. Today I sat around watching movies offered on Starz for free this weekend. I got through the day and sometimes, that's all there is. Getting through. I feel better, but not yet strong. Better is better.

I find myself watching other people's travels today on fbook and when I get a picture share from a traveler. It is admittedly difficult because I so wish I could be elsewhere, on an adventure. But I do not begrudge those who are out living. One day soon, I will be done with treatment and will be able to move past this chapter. I expect to make some changes and to prioritize wisely. I will have had plenty of time to think about such matters...as in that is what I do now. I think about what matters most, how to know when I am kidding myself, how to remain hopeful but not be foolish...and how to know when to let go of the past and create the future. This house is likely to become the past. It has facilitated my stay here in CNY. It has been a good place for me to safely live a CNY life. It costs almost $500 a month to pay taxes and insurance to be here. Those monies are never recouped. They are simply the cost of life here. And that is a lot of money to spend...before buying necessities such as food and beverage and heating and cooling.

Friday, gloomy Friday...

I have some sunshine in  my heart, but as far as the weather here goes, it is more of the same...deep gloom and rain with temperature around 40. I'm not going anywhere today, so that helps...maybe. I did not sleep well and have made further realizations about the treatment path I am on.

I chose not to take the two standby drugs this time, as an experiment of sorts on the one hand, and because I did not feel any need to. But, it is clear that the steroids I take the night before chemo and I am then infused with before the actual drip of the chemo chems, have a very amphetamine quality to them. I had a very difficult time sleeping last night. I was up hourly, without exception, having to pee. That is a good thing, because elimination is vital. But it meant very interrupted rest at best. I was thinking about different life situations from the groggy place I awoke to. And I began to internalize the big lesson that Rita read to me while I was infusing on Tuesday: these are thoughts...let them go.

I have continued to think that I have a big life lesson in this chapter that I have not yet fully realized. I know that not worrying and fretting is a part of it, but I have not seemed able to know what tools to use to really learn this...to implement it, that is, to be able to let go of such a useless pattern. And Rita read aloud from a book I own the other day and it seems I heard something of a pearl there. So, I shall continue to treat thoughts as thoughts and practice letting them flow and go. Amen.

I have made some macaroni and cheese and broccoli. Why that appealed to me is irrelevant. I wanted it, had the ingredients and am now eating it. It is the first meal of the day at just after 3 pm. I am having a not-so-great and not-so-bad (might as well say that) Friday and that seems not much different than other Friday's of treatment week. It is clear that ideally, I would be waited on...would be able to lay in bed as desired, but I am grateful that I am ok enough to get up and take care of me, albeit slowly. With two more scheduled chemo treatments ahead, I am going to get through this no matter what. But I shall try to get some self-coverage that has been absent on these two difficult days post chemo. I imagine there will be some blood count shift for not taking the Neulasta shot and that there is likelihood I will need to the next two times. I now know that it is better without, but there has definitely been some aching and bone pain despite no shot! I had not thought that likely. I can only hope it will be warmer...perhaps sunny next time, but here in CNY, there is not even a great probability for that. This area typically doesn't have much sunshine and the effect of lack of sunshine is real. I can ship the thought off and focus on positives, but the lacking sun is a real element. As I think about what my dreams or desires are the for remainder of my life, weather patterns have a place in the dreama-schema. However, as I handle my separation from my dearest one right now, the vital role of nurturing, kindness and love as a foundation in my life is readily apparent. As is always the case in life, what is next is to be revealed...and now is all there is.

It is hours later and I am inclined to add: I have felt progressively worse as the day went on. I am unable to find the vital papers I received for tax filing. I have checked everywhere I can think of. The last time I saw them was last Friday evening. I am about to go to bed and get up early to try searching again. This is a problem that needs resolving pronto. All of my paperwork is organized. I cannot imagine why I would have separated the necessary documents from the other docs I was gathering.

My port site has been with painful sensations this evening and my head is sweating. I still feel swollen. I am tired and truly hoping to get to really rest.

fuzzy headed me!

could this be the easiest chemo yet? really?

It's Wednesday evening. I am truly trying to get to bed at a decent hour. The truth is, that doesn't happen as often as it should given my health needs and what is common knowledge. Rita is in bed and leaves in the morning. Her short stay has been invaluable. She has intuitively handled everything she could have. I feel quite grateful that she chose to give to me in this way at this time. As is always the case, when I have someone stay here and provide me a way to really rest, I do better. But I have even better news to report this time.

My body is handling this round of chemo better than it has handled any of the others. There is a different element in the evaluation that I really do not know the impact of in the findings. Simply put, I did not feel nauseous and did not take the anti nausea drug nor the Ativan. I did use medical m, but nothing else. I had the medications with me today when I went to Hematology Oncology for the Vitamin C infusion, but never needed to take any. Ditto now, all these hours later. And I feel relatively well! Add to the equation the fact I did not get the Neulasta shot and thus have no bone pain and I don't have to anticipate any tomorrow or the next day. I will learn next week how this choice did or did not effect my blood counts. I am feeling very grateful to be able to give this report. I have no idea how Rita feels about coming to my aid when I am doing so seemingly well. I hope she realizes I wasn't joking when I told her that she may be the reason I had no problems this time. Her gentle help on all fronts brought about a calm and sense of well-being which may have impacted the outcome...

On a less positive note, at the Vitamin C infusion I got a nurse whose insertion of the feed line (with needled end that goes into port) hurt and bruised me last week, and this time when she inserted the line I vocalized the pain inadvertently. After she took the line out at the end, she put the customary gauze and tape over the site. When I looked down a half hour ago, I noticed blood had seeped through the gauze and that has never happened. I have only had a drop or so of blood on the gauze. This time the site bled. I intend to call and let my doctor's nurse know that this happened. I don't think this is a big deal; it was not an inordinate nor worrysome amount of blood. However, it was a deviation from what is normal to have it weep so much and this outcome goes along with a painful insertion on two of two occasions. I simply do not want her to be my nurse anymore and I want my doctor's nurse to tell me how to make that so, preferably with her help.

I have begun a list of calls to make in the morning and aspects of my tax spreadsheets to be found and entered. I feel like after I bring Rita to the train station and return home, I will be able to accomplish my goals and care for myself. There is plenty of food in the fridge to grab and eat. I know Barb will be calling after work and I will ask her for any supplies I may need. My cancer mentor has offered to come over to help or visit and I will decide if I need either once I am home. The situation I am in is very different than any of the other three chemo rounds. And I say this after writing about my concerns and fears about this round being worse as the last one had been.

I feel tired and realize I still have not figured out how to change this blog so that it reflects the actual time I am writing. When it was set up, somehow it was in PST. As much as I love it out west, I am currently living in the EST zone. The true time I am writing has consistently been three hours later than listed. Now that I have set the record straight, I will exit this, make a word with friends move in each game that it is my turn in, and head to bed. May the spirits grace me with good rest and the ability to awake and feel good - again!

Chemo four infused!

Infused sounds like a cool thing...and I reckon it is. Rita got up before me and had beans cooking, coffee dripping and the dog fed by the time I made it to the kitchen!  I got my favorite nurse today, whose pokes do not hurt and who is a great gal. I began to feel drousy once the benadryl was in me and was out with the next addition. I slept about four hours and needed it having been up til 5 am. The chemo sit well enough with me that I went ahead and handled two errands: Tractor Supply store humongo bone purchase for Trooper (Thanks, Auntie Rita, says Trooper!) and shirt exchange, then to the bank. Once home, I went into bedroom and took my preferred medication. I then ate a dinner of white bean soup and organic jasmine basmati brown rice, courtesy of Rita. After dinner, we viewed some pics and watched a Nature show of high interest about Douglas Firs.

I reached out and asked my sister if she would take me to the PET scan Tuesday and now I no longer have any concern about that. I realize Wednesday is the really big day. Dr. Puc will go over the results of the PET scan and my prognosis. I believe it is going to go well. Today's blood work provided the latest CA-125 results. My number is now 3.8! It is down from last time. I was recently told that it is unlikely the number will go all the way to zero, but I am not convinced. I sure want it as low as possible. The chemo is doing it's job for the cancer antigen number to be down in low normal range. I am grateful and delighted and charged up with more strength at this point. I feel good and not nauseous. I hope to keep this feeling. I have vitamin c infusion tomorrow afternoon. Things feel on track.

I know I am on the right path. I have given thought to my confusion and have made peace within. Sometimes we simply cannot understand actions and take things personally when they are not meant to be. It's equally true that actions are a form of communication and they say things in lieu of words. I get all of this. I suspect I will grow though the difficulties ahead as I generally do and that I will be a better person for wisely evaluating my feelings and working to better understand myself.

I sign off ready to get to bed at a better time than I achieved last cycle. Hoping to feel equally well in the morning. I believe I will be able to take Rita to the train station Thursday morning, no problem, and then to return home to jam on them tax prep sheets. I will be happy to have that appointment over with on Saturday.

Nurturing weekend...dear friend comes...more help..

I yielded to temptation and pushed my tax spreadsheet aside to put energy into nurturing on Friday. My bf was with me through the full weekend that included a dinner with family I seldom see, viewing SU's Final Four defeat, breakfast in bed, yard work and more. Rita, a dear friend of many years arrived last night to come to my aid. We enjoyed conversation all morning and through the afternoon before embarking on an outing to the health food store and Chittenango Falls. I am most grateful that she bought me key supplements that I had run out of or was about to run out of along with nutritious foods. We picked up Ed who joined us to the outing to the falls...where we hiked off the trails and enjoyed being out in nature on a day that seemed springlike. There is no question my overall energy levels are down. Simple short hikes such as today's take more out of me than ever and it saddens me each time I realize further decline. I know to push on and accept where I am at and give thanks things are going as well as they are. The hike was followed by a back roads quick tour through the countryside to Fayetteville for Ed's treat of dinner. I chose my standby vegetarian middle eastern food which was absolutely delicious. Ed had announced he has decided to depart on an eleven day train trip tomorrow eve, so a stop at the adjacent TJMaxx for him to find a travel pillow followed dinner. Rita enjoyed finding some good deals on great items, Ed found his pillow, and I struggled my way out of the store empty handed.

After dropping off Ed, I began to ponder the sea of confusion that had come over me. I'm doing some internal wrestling to sift to the core of what is sitting so difficult with me. I find myself vulnerably wondering how I will make everything work out this week and next. I'm scared walking into tomorrows chemo because of how poorly the last one went. I know I will live through whatever difficulties are ahead, but it is still disconcerting. Next Tuesday morning, I have a PET scan appointment that I cannot drive myself home from. This is an unmet need. I discussed with my counselor and cancer survivors how damn difficult it is to go through something as big as six rounds of big-guns-chemo living alone. The hope this time is that not having the Nuelasta shot will mean no bone pain and thus an easier time of it. The flip side is foregoing the shot will leave me more susceptible to germs' destructiveness and I will need to be even more careful than I have been willing to be. My fears are centered on the lingering nausea I endured last time and the known reality that the chemo is cumulatively building and that this time is likely to be worse. And the person who has been willing to help me during the second and third rounds and who provides me the nurturing and love I know to be vital is stepping out for the next eleven days. I know I am strong and must become stronger now. I'll be grateful for collective prayers that I will do well, and accept what is with grace and dignity, wits and that fortified strength.

Rita will be with me through Thursday morning. Hugely great. One local friend has notified me that she will call and be able to come after work Thursday and Friday should I need help or anything brought to me. I must be ready to go to my taxes appointment on Saturday morning, no matter what. I have a few errands I did not make a priority that I now realize I will need to figure out. I feel myself already falling into some vulnerable, pitiful headspace, aware that the test is on for me...

But to bring it all back to gratitude and away from fear or sadness, in today's mail that I came home to, I received a check from a dear friend in Humboldt, a second donation from another dear friend in Humboldt came via Paypal's email yesterday, and an additional donation from Rita was handed to me upon getting home this evening. The financial help I've received from my friends has in a real way been key. It is a demonstration of compassion and understanding, of care and love. Each time I receive help, a bit of the huge burden is whittled away. My share of the surgery and chemo costs is coming due and the ongoing weekly Vitamin C infusion payments are due at the time of services. Difficult is such an understatement of how it feels. Yet bit by bit, what is needed is being received and used to get through this finite chapter of getting to the remission side of stage IV ovarian cancer.

I believe the lessons I am learning and the contemplation I work through regularly are shifting how I will live the rest of my life. I will take time to really get to the core of what my current hurt is really about and force myself to work past it. I hope the energy spent on that propels me to inner peace and that I will know what actions are best and right. Amen.