#19 April 18 - July 8

 "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." - Winston Churchill 

My last blog was almost at the end of radiation. The boosts were so easy after the whole breast rads -just one and done. I finished all 31 rads, but not without scars. At the end, I had fairly bad burns on my collarbone and under my arm, plus lesser burns under my breast.

My radiation oncologist had a plan though. I had to wet gauze compresses three times a day with a Domeboro solution (kind of like Epsom Salts,) put the compresses over the burns and lie there for 15 minutes. They had to be really wet so the solution would run down my body. After that, I had to let the wounds air dry, then cover with Aquaphor. What a sticky, wet mess.  But my RO knew what she was doing. Just about the time I thought they would never heal, I had an almost overnight cure. Thank goodness because I was about to begin several weeks of travel, and the soaking and the drying and the stickiness were not going to be fun.

I saw my medical oncologist right before I had a short trip to California for my cousin’s memorial service, and she gave me the script for Anastrozole which is the anti-hormonal drug I will be taking for the next ten years. I sent it off to my mail pharmacy and will begin it when I return from all my trips.

I managed the flights to California just fine, wore my lymphedema sleeve as a precaution, a hat to cover my head (hair is still too short for me to feel good without a hat - this is 11 weeks PFC)

and had no ill effects. The day after I returned from California, my husband and I took off for a road trip to Texas with both the dogs. Long drive the first day which we shared, but I was still wasted by the time we stopped. My biggest problem is stamina. I shut down in the afternoon as if my gas tank has run dry.

We stopped overnight in Sikeston, Missouri, and then overnight close to Texarkana to see my husband’s sister and brother-in-law. The next day we made it to our daughter’s home south of Houston. We had our granddaughter’s band concert that night, so I slept the sleep of the dead after that. We spent another week there waiting for our grandson’s band concert, then headed north to family in DFW. We had a great time seeing lots of family, then up even further north to more family close to OKC. Finally one overnight and then we were home.

Instead of getting to rest from all this travel, I had to prepare for a colonoscopy which was necessary for two reasons: one – the diverticulitis when I was in chemo, two – it had been 10 years since the last one. One would think that modern medicine would come up with a better way than to drink that god awful stuff they make you drink, but they have not. As I posted on Facebook that day - For those of you who always thought I was full of it, I can assure you that as of right now, I am not.

The good news was that I had no polyps and when the biopsies came back, they were negative as well. Ten more years for them to come up with a better way.

I started taking the Anastrozole after I got over the colonoscopy, and watched carefully for side effects. My biggest worry was the joint and bone pain that many suffer on the AI’s (Aromatase inhibitors.) Lucky for me so far, I have had some joint stiffness in my hands in the morning, but have not noticed an increase over the osteoarthritis pain I always have in all my other joints. The other SE was an increase in hot flashes. I probably have them 15-20 times a day now. Not fun. Sometimes I actually feel one start in the soles of my feet for about 30 seconds, next thing my face is burning and sweat appears around my hair line. Then it’s gone. Hey, if it keeps me from getting a recurrence of cancer, I can deal with this.

My stamina is increasing daily. My hair is growing slowly. I did finally go to my hairdresser to get it trimmed since the neckline especially was out of control. I am getting “chemo curl” which makes it look shorter. Here it is at 16 and 22 weeks PFC.

I may just keep it grey, or I may not. Right now I’m just glad to have hair, as some of my BC sisters have found that Taxotere (one of the chemo drugs I took) can be responsible for permanent hair loss.

I have now met with both my RO and MO and do not need to see them for approximately six months. I will continue to see them for the next several years. I will have to have bone scans and blood tests for a long time  My cancer is not cured. I am NED - No Evidence of Disease. My last active “cancer” appointment is next week when I will have my port-o-cath removed! I will be seeing my breast surgeon in September for another mammogram. It will be one year since all this started.

When we get on the Breast Cancer train, we do not know the final destination. Sometimes the train is going very fast, and all we can do is hold on and hope we don't fall off. We progress to different cars during our treatments, and we hope that our journey is linear, but we know the sisters who have had to make the loop to the cars in the back again. We may eventually move into more comfortable compartments, and we can get off the train to enjoy certain stops and live our lives the way we used to for a time, but we are on this train for the rest of our lives. The general population does not know this. I did not know this before I got on the train. It's not a "battle," it's a journey.

#18 February 17-April 17

Some of you may have given up on me continuing my blog after chemo. I certainly had. It seemed that every time I thought about writing anything, my mind just shut down. I finally did get some thoughts put together, and then my computer crashed. I had to reinstall Windows, and of course, lost my files on the desktop.

I am now 10 weeks PFC which stands for Post Final Chemo (or as some in the breast cancer community say, “Post F&*^$%g Chemo.” I still have some of the chemo effects which are gradually going away such as “tree rings” on my fingernails, some food dislikes which I developed during chemo, but which have stuck with me, and of course, hair or the lack thereof.

As of today, I have slightly more hair than the baby.

It is very soft, short and salt/pepper colored. My husband says it looks like I have a five o’clock shadow on my head.

During this massive hair growing time, I have been able to experience the delights of radiation. I met with my Radiation Oncologist on February 25^th and I really liked her. She said that I would have a series of 31 radiation treatments – 25 “whole breast” and 6 boosts – just to the tumor bed. I figure that if I start glowing in the dark after this, I can read my Kindle by my boob light!

On March 1, I went for my radiation simulation. Here they place you on a table, form fit a plastic mold to your body (it is warm when they first put it around you, and as it cools, it hardens,) CT scan to see where everything is, and take lots of pictures – X-rays and otherwise. I also get four tattoos to line up with the laser beams (very small – looks like a freckle) – I did ask for color and shape (Stars? Butterflies?) but was refused, and lots of sharpie drawings on my chest and boob. It takes something around an hour and 15 minutes to complete. Did I mention that I am half-naked with my arms up over my head for all of this?

After they get all this information, they must “map” the amount of radiation delivered to the breast area while avoiding or minimizing radiation to other parts of the body. Since my cancer was on my left breast, it is especially important that they avoid my heart and lungs.  They do this by several means – angled fields that skim across the chest, special blocking in the machine to avoid radiation to normal tissues, wedges in the path of the beam to bend the dose of radiation, and me holding my breath to keep my heart and lungs away from the beams. The last method is the least precise.

Once the mapping was completed, I went in for “filming.” Now, I am on my mold or cradle as the technicians call it, and there are lots of adjustments to my body, more sharpie drawings, and lots and lots of x-rays. The linear accelerator machine looks something like a giant Kitchen Aid mixer without the beaters.The cartoon figure does NOT have her arms over her head. This is important to remember as it is one of the worst things.

I’m given my special gel to try to keep my skin from burning up, and I go home to wait for March 15 to start the everyday Monday through Friday trek to the hospital for 31 days.

I expected the first treatment to take longer, and I was not disappointed. They seemed to have a horrible time getting my body placed “just so.” While I am grateful for their dedication to precision, the arms over the head really do get old, especially my left arm which is still numb in places from surgery, and which is also trying to develop some lymphedema. Radiation can exacerbate lymphedema, so I’m continuing to see my therapist, and she is training me in Manual Lymphatic Drainage. She is also fitting me for a compression sleeve and glove which I will have to wear to keep the swelling down.

The next several treatments seem inordinately long, most especially the third one, where I was left assuming the position for what seemed like hours while they got the doctor in to look at the problem. The problem was that the machine was saying one thing, my body another, and they didn’t want to zap me until they had the final word on what was correct. They take placement very seriously – down to the millimeter, and this is important.

It has now become a routine - get up, have coffee, shower, dress, drive to the hospital, get zapped, come home. The side effects are not nearly as bad as chemo. My skin started out with a slight reddening which would fade by the next day – kind of like when you get a little sun. Then, the red became redder and stayed longer. Now I have a couple of really dark red areas, and the red doesn’t go away. I have occasional stabbing, burning pains, but not severe and not for long periods. As of right now, I do not have any breaks in my skin or blisters, so I am very happy about that.

The fatigue, however, is something else.  It’s very hard to make yourself do anything, and I can fall asleep as soon as I get in a prone position. I will be so glad to have some stamina back.

The good news is that I only have one more whole breast radiation treatment! 

♫One More Rad! 

I never thought that I would see the day, 

That they would finally take the burn away. 

This radiation that they send 

Will now come to a freaking end♫ 

Sorry, Les Miz. After the last whole breast tomorrow, I will have six boosts which will be delivered directly to the tumor bed, and for which, I do not have to have my arms above my head! Furthermore, my technicians have promised me I will be out in about 5 minutes!

Once radiation is complete, I will meet with my medical oncologist to set me up for hormonal therapy for the next 5-10 years. That plus follow-ups will be in my future, but the major treatments (surgery, chemo, radiation) will be over!

Hopefully, I will be more timely with my additions to this blog as the rad fatigue begins to wear off, and old Suzanne (no, I mean REALLY OLD) comes back!

#17 February 8-17

 For some reason I was very apprehensive going into my 3^rd infusion. I was feeling so good, I guess I was afraid that getting shot down again was going to be very difficult to come back up.  I was right.

My third infusion, as with the other two was uneventful. No pains, no nausea, etc. I took my proscribed meds, went back in the next day for the Skele-Gro shot, and was doing quite well. 

We had our last season tickets for one of the regional theaters to which we subscribe on Wednesday to see a production of Bye, Bye Birdie. This particular venue has a lovely restaurant attached to the theater, and we had a great lunch. I had been purposely avoiding a lot of vegetables, not wanting to upset my GI tract any more than it already was, but I had a Caesar salad, and broccoli, and a lovely filet for lunch – first time to eat red meat in a long time.

The show was fun, albeit somewhat dated, the leads were great, in fact better than the show. Had a nice evening, went to bed and right to sleep until about 11:30 p.m. when all hell broke loose. I woke to severe abdominal pain which was only slightly lessened by a stint in the bathroom, and which continued all night. By the time 8 a.m. rolled around, the pain had settled in my left side. I could barely move; any pressure such as trying to sit up or stand hurt tremendously. Then, I would have these spasms which were truly some of the worst pain I have ever had in my life.

The only reason I hadn’t called my oncologist was that I didn’t want to go into the ER, but when I did call her after 8, that’s exactly where she told me I needed to go. She said that I might have diverticulitis and needed to get into the hospital. She called ahead to the ER and told them I was coming, but it didn’t seem to help at all. Although I told them at the triage, that I was having spasms of pain on the 8-9 level (10 being the screaming type of pain,) I sat there for three hours with no relief.

Finally, I was moved to the ER room where my port was accessed, fluids and antibiotics administered, and eventually saw the admitting Dr. He did prescribe a pain shot which helped, but did not eliminate the pain on my left side. The spasms continued, albeit somewhat lessened. I was given some contrast to drink in preparation for a CT scan. The pain continued, and they did eventually give me a different pain shot which was the first time in over 12 hours that I was not in pain.

After the CT scan, we had to wait for it to be read, and eventually, an oncology resident came in to explain that it did show that I had inflammation in my diverticulum, but good news, no abscess or perforation. I was going to be admitted, so I sent my husband home, and waited for a bed to be prepared in the hospital. I wound up being in the ER for over 12 hours before being sent to a room.

Some explanation of diverticulitis. Almost everyone over the age of 40 has a condition called diverticulosis which is where small bulging pouches develop in the digestive tract. Most people are unaware of this. Mine was diagnosed during a screening colonoscopy ten years ago. I have never had a problem with it until now. If the pouches become inflamed or infected, you have a condition called diverticulitis. The most common symptom is abdominal pain, usually on the left side. Bingo! Why did I get this? Can we say chemo?

The treatment for diverticulitis besides massive amounts of antibiotics (especially since I was immuno-suppressed due to chemo,) is bowel rest. Nothing. I couldn’t even have water. I was able to talk them into some ice chips, but that was it. The rest of Thursday evening, and pretty much most of Friday is a blur. I couldn’t stay awake for any length of time. I was still having pain shots (which I’m sure added to the feeling of unconsciousness,) until about Friday afternoon. (Side note: When speaking to my brother on Saturday about how I felt so cognitively impaired on Friday – his response was “How could you tell? You’ve got to love brothers.) I was still having the spasms, but they had lessened in intensity and duration.

By Saturday morning, I was allowed clear liquids, so beef broth tasted like manna from heaven. Unfortunately on Saturday, I also started spiking a temperature, so back to x-rays to rule out pneumonia and other indignities. When the fever breaks, it causes massive sweating. I wake up drenched about midnight Saturday and tell the nurse, I have got to take a shower and have all bed clothes etc. changed. She’s not supposed to let me shower because of my port, but I convince her I will not let water fall upon it, and she allows it. Huge difference.

I stayed on clear liquids until Sunday when I was allowed regular liquids meaning I could now have milk, yogurt etc. At this point chemo appetite reared its ugly head, and I could barely get anything down before it began to taste really awful. I have now had no solid food since Wednesday evening.

Thanks to the antibiotics, the chemo I had had on the previous Monday, and no solid food, I now also had diarrhea. Such fun. After enduring the spasm, I had to get up gingerly, unplug the IV pole, and then make my way to bathroom. After taking this trip multiple times, I did ask why I couldn’t get an anti-spasmodic like Imodium.  I was finally given some Imodium – sweet, blessed relief.

The attending Dr. is still saying a couple more days in the hospital as my white blood count has started to drop. I still run a low grade temp, but nothing Tylenol won’t help. I still have the knot in my left side, although the pain has mostly subsided.

Finally I am allowed a “low res. Diet” meaning food that won’t leave stuff behind in the GI tract. Of course, now I find it almost impossible to eat anything. I do get a banana at each meal and am able to get most of that down. For the other food, I’m lucky to get three or four spoonfuls before I have to quit. My GI tract has settled down however, and when I finally pass something akin to a “normal” BM, I feel like running out into the hall and gathering an audience “Y’all come in here and see what I did!”

Tuesday morning, the Dr. comes in with a smile and says I can go home. O frabjous day! My count has stopped dropping, I’m no longer in pain, and there have been no consequences from my diet. I immediately text my husband to “Come on down!”

Home is the ultimate wonder drug. I kick back in the recliner and fall into the deepest sleep. I’m still having trouble eating, but my wonderful husband is able to offer me more options that don’t have funny tastes. For some reason, I can always eat a baked potato or bread when I can’t eat anything else. Can’t eat much of it, but still anything is good.

I spend the next two days resting, trying to eat, and getting back some strength. Thursday morning, I decide to send my oncologist the following email:

I thought I would send my thoughts to you about the final chemo.

I remember your saying at our first appointment that the biggest key to my non-recurrence was going to be the hormonal therapy since my tumor was so positive for ER and PR. My Ki67 stained 10-15%. What are the chances of saying that my chemo is finished with the three already done instead of continuing with the fourth?

Obviously, I don't want to do anything that will seriously jeopardize my survival, but this last chemo and hospitalization has really thrown me for a loop. Not only will I worry about another diverticulitis flare now that I've awakened that sleeping giant, but the side effects this time have been hard to take as well. I feel much worse than I have during the previous chemo sessions. The hospitalization has exacerbated my lymphedema as well, and I will be making an appointment with the LE therapist today.

Please send me your thoughts.

Not even ten minutes later, I got this response:

                I agree. We will cancel the final chemotherapy dose.

OMG! I cannot begin to describe the joy that flooded my being. To not have that last chemotherapy hanging over my head, was absolutely the best news ever! She went on to say that I needed to get right in with radiation. I had an appointment for March 1^st, but the nurse practitioner was able to get me in on a cancellation, so I’ll be seeing radiation oncology on February 25^th instead.

So NO MO CHEMO for me!

#16 January 18- February 7

Haven’t written much in a long time, just trying to get through this second chemo session; however, I think I can successfully say I have avoided the ER this time! Well done, me!

To backtrack, my second infusion was January 18 – Woke up at my usual 3 a.m., stayed awake a long time, finally dozed just before 6. Tired of this.

Got up to the blood draw area early today, but it still took a long time before they got it done. Good news is that the nurse thought my port looked just fine, so that worry is set to rest. We had brought a Seattle Sutton lunch with us, so went downstairs to the café and ate lunch before infusion.  I was supposed to start infusion at 1 p.m., but some of my labs weren’t back, so it was 1:30 before they called me back. They gave me a Zofran for nausea, and then have to wait 30 minutes before starting chemo. My oncologist had dialed the amount back slightly, but the Taxotere was going to take 90 minutes, and the Cytoxan 15, so now I was going to be late for my oncologist visit at 3:30.

Chemo passed uneventfully. I made sure to drink a lot during the infusion. I think I’ve drunk a gallon already today. Finally, about 4 p.m., I was through and hot footed it over to my oncologist. I was now a work in, so it took a while, but eventually both she and her Fellow came in and checked me out. She’s also going to dial back the Skele-gro shot tomorrow since I had some bone pain from the lesser one before. I just hope that doesn’t mean I’ll crater on blood counts this time, but I know she knows what’s she’s doing. Confidence is good.

It was after 5 p.m. before we got away, so I drove, but I felt great. I expected to be sitting in wall to wall traffic, but lo and behold, everything was moving great. We had to stop at our Seattle Sutton distributor on the way home, so it was way past dinner time, and we made the mistake of eating out again. I will say this, I only ate half, and we froze the halves when home to hold for the next rebellion.

Felt tired, but OK the rest of the evening, but the night was restless. I may have awakened every hour. Good ole “Dex.”

Jan. 19 – Husband took the dogs into the groomer this morning, and I got a few things done that I’ve been trying to knock out. By the time lunch was over, the dogs were ready, and it was time to go back to the hospital for the Skele-gro shot. He just let me off, and I ran up to the infusion clinic. It just took a little bit, then we were headed back home.

Couldn’t face the planned meal, so just had a baked potato which tasted really good. So far, all systems are go, just tired from not sleeping well, plus my taste buds are so erratic.

Jan. 20 – When I took my cotton night cap off this morning, it was full of little, tiny hairs. I took my shower, and even more came out, although I’m not what I would consider a skin head at this point. I’m glad that I didn’t shave my head, but just had it buzzed very short, since the shaving can create little stubble bumps sometimes. This way, the very small hairs are falling out naturally without any irritation.

Haven’t had any bone pain from the Skele-gro yet, or the joint pain from the “Dex” crash, but I am being pro-active taking Tylenol and ibuprofen at appropriate intervals. In fact, other than being tired and having funny tasting problems, I feel somewhat normal.

Jan. 21 – woke up to dog throwing up this morning, then I didn’t feel so good myself. Can’t really call it nausea, but there was a tightness in my chest that didn’t feel right. My husband got me some crackers which helped and eventually I was able to get up, ate a couple more crackers, and got all my meds down. My right arm is hurting – rotator cuff? Exploding tendons? IDK

Jan. 22 – not so great day. My husband had to go to his doctor which is way up north, so he’ll be gone for most of the day. I tried to have some toast for breakfast – first slice was fine, second slice morphs into cardboard. I spent most of the day drowsing on the sofa, dogs on my lap. I didn’t even turn my computer on.

Jan. 23 – felt some better today, managed to get out to help my son with some paperwork for his car. Tired out fast, but no major problems. Still can’t eat what I ‘m supposed to eat. I’ve manfully tried to get through the Seattle Sutton meals, but it’s not working for me, plus now they’re starting to get old. Decided to cut our losses. I came up with some meals that are somewhat simple for husband to put into oven or microwave that I think I can eat. My appetite is so capricious; he says I’m like a pregnant woman.

Jan. 24-29 – feeling really tired. Still having lower GI issues or “pooping funny” as my son calls it – that will be one of the most wondrous things when I am through with this – just to be a normal evacuator!

I’ve been taking my temperature twice daily just to keep track of trends since this is the week for low blood counts. It goes up a little each day, but not until Wednesday do I feel the dreaded “flu-like” symptoms. Wednesday 3 weeks ago is when I hit the magic 100.4. My temp, however does not climb any higher than 99.8, and I awake Thursday feeling temp free.

Although I’ve no temp issues, I’m not willing to bring it on by over indulging, so I take it easy Thursday and Friday. We had pre-ordered Season 6 of Downton Abbey and it came on Thursday, so guess who binge watched almost the whole thing. We finished it on Friday, and while sad that it is over, I felt they did a wonderful job of closing all the story lines. And now, we can watch all six seasons whenever we feel like it.

Jan. 30 – I now have a little over a week to get my strength back up before getting zapped again on Feb. 8^th. Still feeling good although stamina is down. Interesting thing, although my hair has completely fallen out on my head, I now have a crop of very fine fuzz on top. Is it trying to grow?

I still have my eyebrows and eyelashes, although they are thinning.

January 31 – Today is husband’s birthday, and we celebrated with a brunch at a new local restaurant. It was very good, enjoyed the company of son and DIL as well. I enjoyed my soup, but wished I had gotten the French onion after tasting my husband’s. I got the Crab cake Benedict which was pretty good; the hollandaise was terrific. We shared their special dessert – the gold bar cake which was outstanding. We will definitely be coming back.

Feb. 1 – I had tried for a while to get into the “Look Good, Feel Better” seminar sponsored by the American Cancer Society. Every time I called, I got an outdated recording, and no way to leave a message. I finally contacted the ACS directly, and they put me in touch with the representative.

I was scheduled to attend today, so I drove down myself, got to the meeting room slightly early, one other person was there. She was busy on her phone, so no small talk. Two more people came in and looked at me strangely, prompting me to ask, “Is this the ‘Look Good, Feel Better’ seminar. That was a big NO.

Finally found the Cancer Society representative, who somehow had not gotten the room reserved. She managed to get the seminar pushed to 11 a.m., so I got a snack and waited till then. Only one other person in the room again, but this time, we talked, and it turns out she was there for the seminar.

She has lymphoma which they have treated with her own stem cells. How fantastic is that? How could there have been controversy over such a miraculous treatment? Her lymphoma is in remission; unfortunately, the poor thing also has lupus which has come out of remission. See, every time I start thinking how bad off I am, I always run into someone else who has it much worse.

The volunteer cosmetologist who ran our seminar had had a mother with cancer, so she knew something about what we were going through. She was very sweet, but not overly knowledgeable about makeup application. What amazed me was the bag of makeup we were given. Whole bottles and compacts, not sample or travel size from every possible make-up company – Estee Lauder, Revlon, Physician’s Formula etc.

We were also supposed to be shown how to tie scarves and see a video, but that did not happen. Oh well, can’t complain when I’ve been given so much. Here I am with wig and makeup -

Feb 2-7 – I got some really bad news during this week about my cousin Terry. He died unexpectedly from an intestinal blood clot. Talk about making my puny little side effects feel very small indeed. 

Terry was almost two years younger than I, and although we had not seen each other in several years, he had been very supportive of my breast cancer diagnosis. We were very close as we grew up together along with his two brothers, my brother and my other cousins.The following firing squad picture was taken in 1963 as we all prepared to go to Six Flags Over Texas. My cousin Terry is the second from the left. Never fear, we two girls had to wear the muscle shirts as well (they were aqua and white,) we just hadn't gotten the memo when this picture was taken.

My cousins have always been more like brothers and a sister than cousins to me, so this hit me very hard. I feel very healthy in comparison, says the chick with the cancer.

All this week, I have really been feeling so well that I almost could forget that I have cancer. Well, at least until I look in the mirror. I’m really dreading Monday’s infusion because I know it will put a stop to all this feeling good and replace it with gunk.

OK, step back, think positively. Last session was much better than the first, maybe the third will be better still.  That’s my story and I’m sticking to it.