CaringBridge entry— 11/9/2016
The aftermath of the last chemo has been a rough ride…….I was warned and I thought I was prepared….but this last onslaught was much worse than I envisioned.
The first 5 days after the last chemo….literally the last….were smooth sailing. Then came Sunday(Oct 30)! While making coffee I felt my body collapsing. I was able to lean on the kitchen sink and realized that I needed to slide to the floor. I am so grateful that I didn’t faint which might have led to serious injury. After a few minutes I regrouped and moved around slowly. By the afternoon the “great fatigue” started. That lasted for a week….just as I was turning that corner the mouth ulcers erupted.
On my Sunday (Nov 6) morning walk with Lucy dog I ran into old friends Eleanor and Nick. It was great to see them but I was barely able to say even a few words. My mouth – specifically my tonsil and back of tongue were hurting, even with pain meds. I spoke with oncology twice during that week and was assured that I am on track but have been hit hard with the last chemo treatment. The thing I have worried most about is hydration. It’s hard to imagine that I had to drink all liquids with a straw which I am still using depending on how it all feels. Eating certainly has had its challenges…..a lot of ice cream again and mashed foods.
Midday Sunday it was clear that I was in more trouble and thought it was brilliant when Karen K – one of my long time friends and chemo buddies – suggested that one of the nurses in our knitting circle take a look at my mouth. So it was Ellen to the rescue. I was barely able to speak (I wrote her a note)….she was my nurse, spokesperson and advocate all rolled into one. She and Bill conferred…well me too….and off to Kaiser we went. We were back home within 3 hours with morphine in hand. It’s now Wednesday morning and I have stopped that drug …..I can also talk a bit. The day that I couldn’t talk at all was pretty funny. Here’s what I shared on Facebook.
There is always a bright side….yesterday Bill and I cracked each other up with our hearing/speech impaired situation. My speech is impaired while my mouth heals from bad side effect reaction to last treatment.I write…….he says, “Careful you don’t get writer’s cramp from being so chatty!”
The great fatigue has stayed at bay for a couple days now and the mouth is beginning to heal. Yes, there is light at the end of this tunnel and to the back of my throat….lol! Thanks to all for your help and in particular to all who rallied around me this past week. It might seem like small things but they were big things…Bill continued to make dinners and make sure I was down for a rest (that was easy) each afternoon; Kimberly walked Lucy; Karen and Ellen made sure I got to Kaiser on Sunday; Terry fixed my printer; Jan popped in with a surprise lunch or two; Cindy popped in with listening ear and helping hand, and “love notes” sent from so many of my knitting gang, friends and my family.
I see the doctor this coming Monday. Yeah! There is light!
CaringBridge Entry— 10/27/2016
Monday was a “red” letter day. It was the last chemo treatment of the 6 which was exactly 5 months since I was in ER at Kaiser Fresno.
Many of you know that the last few weeks have been rough with the “great fatigue” following Chemo #5. Just as I turned the corner to feeling better, I had a bit of an emotional roller coaster. I have been pretty even keel during these last 5 months but I am thinking the 16 days of fatigue took its toll. This past Saturday my friend Cindy was so helpful in “talking” me down and that was immediately followed with my buzz cut by Bonnie. I was back to laughing!
Sunday was a special day in that some of my favorite cousins– Dana, Avril and Jill – were in the Bay Area from HI, CO and WA. We are able to meet at Skates on the Bay for lunch and I was able to have the energy to do so. It is always so great to see them. We love to laugh and we are pretty darn good at it.
With chemo #6 I was a bit surprised that I started to experience nausea during infusion. That was a first and we (the nurse and I) were able to get it quickly under control. It’s day #3 since infusion and I am still upright. I do rest every afternoon….but so far I have not crashed. I am pacing myself! I have been able to walk Lucy which is important for me as well. My wonderful friend Kimberly has been on back up and did jump in on Chemo Monday. Lucy loves her and was more than happy to see her.
Thank you to Karen K for being my buddy partner again. It is so enjoyable to spend time with her and she got me inspired by so many projects. There is a word amongst some of us about “squirreling”…we jump from one topic to another quite quickly and often mid-stream.
As of this coming Monday I will be medicine free with exception of the medicine to ward off herpes simplex (cold sores). That will continue for 3 months.
What’s next on this journey?
- See the doctor on November 14. I envision that a PETSCAN will be scheduled soon after that. I believe Mathilda had her last dance and that I will get a clear report.
- Dedicated work to regain my health and physical strength.
- Travel to Idaho in the spring or summer to visit my youngest sister and her family of four kids…..then onto Colorado for a few days.
- Work in my overgrown garden.
- Cook again which I am eager to do. Bill is eager too!
- Make phone calls that have been on hold due to my low energy level. My cousin Diane has been one of those on hold and we love to talk. I have just needed energy to hold a long conversation.
Some funny notes!
- Last night my niece Honara asked who weighed more….me or Lucy? I still have 25 lbs on her.
- I did want to loose weight but this was a rough way to go about it.
- I have eaten more ice cream in the last 5 months than I have eaten since I was a soda jerk in high school.
- My WORD friends are still playing with me….I am so addicted.
- I have become a “binge” watcher of programs on ACORN TV and Netflix. Don’t believe I will be giving that up.
- During Chemo #6 I had trouble joining my cast-on into a round for knitting….Karen K quickly came to the rescue.
Thank you to Bill, my “family of friends” and family for all your love, support and prayers during this journey. I believe that this support along with the chemo has saved my life. I don’t believe I could have done this alone.
I will be eager to share the next chapter of this journey as I know more.
CaringBridge Entry — 10/18/2016
After a week of great fatigue a few nights ago I decided I needed to change my pace to better manage this increased downtime. Instead of trying to get as much as I can done before I crash, I have been focused on what I want to get done for an hour…..and then then take an hour break. That has been easier on me as my need for more rest/sleep time has increased dramatically. I can only say, “Thank God I only have one more chemo!” I have been a high energy person all my life and this is humbling to say the least. My brain is engaged but my body is not!!! I have been successful in warding off another full blown case of mouth ulcers which started appearing last Wednesday (7 days ago). I didn’t waste any time ordering “Magic Mouth” medicine” which is a miracle drug. I am praying that my white cell blood count will be okay next Sunday morning so that I can proceed with this last chemo #6 on October 24. I want to be done and begin the next phase of recovery.
I have been able to plan and manage my down time so that the three knitting workshops have been able to continue….yeah! I am even making some progress on some of my projects even though there have been some days that even the idea of knitting is exhausting. Hard to believe isn’t it? And imagine this….even being on the phone was too exhausting so text became the general method of communication.
As many of you know, I have loved eating all my life…..and that love certainly helps now as it would be so easy to not eat. Thank God Bill prepares a wonderful basic dinner meal. We’ve had roast chicken, steak, and salmon to name a few. I did say the other day that I would be glad when I can help with the cooking again. He smiled and said, “Me, too!” (Right now I am okay for prep sometimes and most often clean up.)
This morning I had to break out laughing once again. The question, “Who has the most hair on the floor? Me or Lucy?” You might ask, “Do you still have hair? Weren’t you going to buzz it?” Well, until just this last week or so I still had some bangs. Now it’s just a fringe and a few strands that are going bye-bye this week. I am amazed that I still find my hair on the floor. I know longer stands of white hair do not belong to Lucy dog or the boy cats. lol
It’s now day 15 since my last chemo and I am thinking I might be on the upswing…..no marathon for sure….just a little more normal. Hurrah would be an understatement. Okay…..that’s it for now. Lucy and I are going to “hit” the sidewalk shortly…..oh I should be careful with those words. I have been known to hit the sidewalk literally in the past.
Thank you to all for your continued amazing and wonderful support.
ps…..I have been in communication these last 24 hours with both my doctor and my oncology nurse. They both assure me that I am on track and that the chemo effects are cumulative. I was reminded about protein, water and exercise. I have been on track with the first two….now will beef those up and can now increase my exercise! Yeah!
Hurray….hurray….🎉💥🎉💥 only one more chemo to go. October 24 will soon be here for the last one and Mathilda’s last effort at a dance. With yesterday’s chemo and the upcoming one I am and will be on immune boost injection for 5 days after each chemo. I will then be done with this chemo therapy and can began the next stage of regaining my health ….continued good rest along with the most important part….increased exercise program. I will be back at the gym for my aerobics class in January!!
Long-time friend Karen K was my chemo buddy again. We chatted, knit and we planned our Friday morning knit group Christmas Season celebration. We have to plan early as calendars get full quickly. We usually celebrate at Skates but his year it will be at Karen’s home. We had another celebration there last year in the summer…..it was so much fun and so easy re ease of moving around and having conversations among all of us. So….of course when Karen suggested her home I immediately said “Great idea! Let’s do it”.
I recently started “drooling” about a new knitting book “Noro Silk Garden – The 20th Anniversary Collection” and it magically appeared out of Karen’s bag yesterday. I already see many garments that will be on my needles during the coming months. Thank you Karen….and thank you for spending the day with me!💕
I am trying to get much done this week catching up with things….the last 3-week cycle required more rest. I usually feel good for the first week and then down for the the 2nd one. This time of down time included the third week.
I did manage to spend three or so hours at the Little Farm and Merry-Go-Round in Tilden Park this past Saturday with my grand niece Shelby and her young family and friends. So enjoyed that….I paced myself pretty carefully but still was exhausted when they dropped me off. In fact, I was flat out for two hours!!
I certainly learned to play “Word with Friends” and watched the entire new series of “Longmire” on Netflix. I am ready for the next season and, of course, that is probably a year away. I did finish a ribbed hat with band of glow yarn for cousin Freddie…photo attached. Knitters…this was a great yarn to knit. If you want to know details, let me know.
One of my friends who has very much been part of this journey recently said it seems like this time has gone by fast…but maybe not for me. In fact, at the beginning I thought what a long time and how would I get it through it. But I knew that was the choice and I had to do it. Now that the chemo part is almost over, it also doesn’t seem so long to me in the big scheme of things. I certainly have a deeper appreciation of life…..every day is a blessing.
Onward…..and love to all!
This post originally appeared on CaringBridge on Sept 22….late in posting here.
As typical for me week one of this 3-week cycle was uneventful re: no major issues. Then on day 8 (typical reaction time) I did the “crash and burn”. On day 9 I began the upswing from the tiredness that put me to bed (or the chaise lounge on the shaded part of the deck at Bill’s) for most of Tuesday. This tiredness was somewhere between the tired and the fatigue that I experienced after chemo #2. I did manage to walk Lucy around the block in the morning…..but it was challenging. Hard to imagine that I didn’t even have energy to knit until 9pm that night…..I am working on a beautiful shawl and actually knit for 1/2 hour! Yeah!
I rallied back some on Wednesday….good morning…than crash and burn again. I didn’t knit at all…..ugh!!! But I did manage to start watching another Netflix murder mystery series –River. It took me awhile to buy into the ghost characters but now I am hooked. It’s now Thursday morning and think I am on my way back to some normalcy.
Bill and I met with my doctor on Monday….a check-in type of appointment. I think I am on track with treatment but I am pleased that he ordered a PetScan (scheduled for this coming Monday). I thought I was not going to have this test until December. Sure I will have one then as well…..again glad I am having one in the next few days.
In my last post I mentioned cousin Freddie. We’ve had a chance to talk….he begins chemo and radiation treatment next week which will be administered over the next two months. I know this “boy” can kick butt too! There will be much to celebrate in December. 💕💕💕💕 I think I need to go to Colorado in the spring or early summer so we can really celebrate together. 😎
Thank you everyone.
This post originally appeared on CaringBridge on Sept 15….late in posting here.
So many wonderful things have happened during the last few days. Chemo # 4 is done and it’s day three since and I seem to be on track with no major side effect issues. I was able to enjoy a day of feeling well for my birthday yesterday….weather was perfect for spending rest time on the deck and it was a day filled with love and good cheer. Bill cooked one of my favorites – salmon – for dinner.
But my day ended yesterday with sad news. I learned that one of my cousins had surgery for oral cancer yesterday. As so many of you know I have a huge family of cousins….with both Mom and Dad’s families there are 50+ first cousins…I can’t even count the 2nd cousins. I am blessed that so many of them from several generations are my good friends. Freddie (namesake for our grandfather Freddie Pugh) is special to me….I lived with his family (my aunt and uncle) for a couple summers (Colorado Springs) when I was in college (Fort Collins)….Freddie is the oldest of four…I loved being the “older sister”. I love that he is my cousin and that his wife Susie has been the glue that helps keep us all connected. Please join me in offering prayers for Freddie and his family as he begins his chemo and radiation treatment to fight this cancer!
Last Thursday my sister LaBerta shared the following on Facebook: “So Bella had to give a speech on Thursday about herself. She had to identify 3 people that she admires and why. She chose those who show grace and strength when they are sick or are battling an illness or disease. Top three were Carolyn Pugh, as she takes care of her body, eats healthy and values her physical health even through her treatments. Savannah Johnson as she is the strongest kid she knows and she is amazed that she smiles and laughs through it all, and Selena Gomez because she has to be strong to be in the public eye with her fight with depression. Needless to say I was speechless and very proud. LaBerta.” I was moved to tears with my 14-yr old neice Bella’s thoughtfulness!
Friday was another special day…..the Friday morning knitting group (FMK) treated me to an early birthday celebration lunch…we always celebrate birthdays on a Friday! We knit and then lunched at Zaytoon on Solano Ave. Just have to share that I was gifted with a lovely certificate for not one but two massages at Hibiscus Spa. I quickly exercised one on Saturday….it was wonderful. Thank you so much all. This is a big birthday as they say….a new decade!
And thanks to my friend Merle for being my chemo buddy on Monday. She always makes me laugh and she taught me a couple new computer games. We are now playing Word for Friends…it’s fun even though she is tromping my butt at the moment! She knit a bit but I couldn’t because I was plugged in via my hand. Won’t do that again!
I learned that I am now on immune boost injections (5 days) following each chemo treatment. As the oncology nurse said it will keep me out of the hospital and I know it will keep me on track with my current treatment schedule. Thank you to nurse friend Debra who is my injector this time. I almost wrapped my head around self-injecting but was grateful when Debra came to the rescue….friend Cindy is on vacation.
Thank you everyone for all your wonderful thoughts and prayers.