Lots of Changes

We have been doing a lot of soul searching and have hopefully come up with a plan that will give us the most time together to create beautiful memories for our family. Matt has gone on full time disability and his last day at work was Wednesday May 8. It was a really difficult day for him that day as all of his co workers gave him a big going away party. He was sad to be leaving such wonderful friends and to be giving up a huge part of himself in the process. He has been the provider for our family for 28 years now and this is not an easy role to give up.

We know though that for Matt to be able to spend quality time with us he needs to be home where he can rest when he needs. Whenever he was at work he put all of his energy into it and then came home and went straight to bed.

Our last visit to the cancer center was not very informative. The tumor markers are staying exactly the same. In the past when the chemo was working to shrink the tumors the tumor markers always went down.

After our 4 days at the cancer center we went over to a new MD Anderson Cancer Center here in AZ to get a second opinion. We liked the doctor we met, but she was brutally honest. She told us that Matt was very lucky to have had the first chemo cocktail work for a year as usually it only works for 4 to 6 months before the cancer outsmarts it and begins to progress. She told us that she would not recommend doing any liver targeted therapies as they can be very painful and will not prolong his life because he has so many tumors in the lungs as well. She said that what we were doing at our cancer center was exactly what she would do.

Even though the news was NOT what we wanted to hear, it did confirm to us that the path we are taking now is the right one for our family. We are comfortable with our oncologist and really like him a lot, so confirming that he is providing Matt the best possible care is a relief. The cancer center we go to is like a second home to us and the oncologist makes us feel that he really cares about Matt and I.

Good news for our family is that we are going on another memory making vacation!! We are flying away from it all to St. John's US Virgin Island!!! We are spending a week in a beautiful vacation home overlooking the ocean. We will rest, relax, snorkel, hike, and forget about cancer. I am so excited! It has been very stressful over the past few weeks. Making these life decisions has been so very difficult.....it has made our situation much more real.

Our Heavenly Father has blessed us so much and he sends us miracles each day if we will only look for them. I received one today at church.

There is a young woman who is a daughter in law to a woman in our church. She is from out of town so visits rarely, but whenever she is here she ALWAYS touches me and is the answer to my prayers. The last time she was in town we were in a woman's class discussing the spirit world, or the place we all go after we die. We were asked to write down a question that we would like to have answered in the lesson. I wrote that I wanted to know if it was real, if Matt would be able to let me know that he was there and watching out for us. Well this beautiful young woman, without knowing what my question was, told of how her mother had passed away from cancer a few years ago and how she and her children and siblings have had numerous experiences where they could feel their mother's presence. How they always seemed to feel her near when they needed her the most. This literal answer to my question was so incredibly beautiful to me. I felt peace and gratitude for a loving Heavenly Father who knew that I needed that right at that moment.

Today this same young woman was visiting again and she again spoke of her mother and how she and her sisters made a video diary of her mother and how much it has meant to her, her siblings, and their children; and how this video would be passed down to each generation and they would all know her mother. I got chills as she talked about it and knew that that is exactly what I want for my children and grandchildren. I came home and talked to Logan about it and he agreed to be in charge of this very special project.

The next time I post it will be with pictures of trip!!! Bon Voyage!!

Mantenere la rotta

Il tempo sembra che voli molto velocemente quando si hanno molte cose da fare e mi sono resa conto che non ho scritto per aggiornarvi!

Siamo stati al centro del cancro dal 17 al 20 e non ci sono delle grandi novità. Il marker tumorale di Matt si è lievemente alzato e l’oncologo ci ha detto che è troppo presto per sapere se il nuovo cocktail della chemio funzioni o meno. Speravamo che il marker si abbassasse, ma non è avvenuto e lì c’è stata un po’ di delusione.

Ma ci sono delle buone notizie. Sembra che questa chemio non faccia ammalare Matt come lo faceva la vecchia medicina. Questa è una buona notizia e cosi Matt ha più energia e riesce ad avere un miglior tenore di vita. È comunque ancora seccato dal fatto che ha un naso tappato e insanguinato e sembra che stia peggiorando. Questo è causato da una delle medicine che non sono cambiate. 

Dopo aver ottenuto i risultati dell’ultima tac, io e Matt ci siamo seduti e abbiamo fissato degli obiettivi familiari e personali riguardo a come vogliamo passare il nostro tempo prezioso insieme. Abbiamo fatto molti piani per l’estate e speriamo di poter creare dei bei ricordi familiari. Il nostro primo viaggio sarà fra due settimane. Passeremo una settimana a Saint John, nelle Isole Vergini Americane.  Staremo in una grande casa vicino alla spiaggia e abbiamo pianificato di rilassarci e giocare insieme per l’intera settimana!

Abbiamo fatto dei piani per andare a campeggiare e andare a Yosemite con i nostri cari amici. Logan sarà a casa quest’estate per stare con suo papà. Lui e Matt andranno qualche volta insieme al centro del cancro e questo lo aiuterà molto! Mi sento in colpa a lasciare i piccoli a casa da soli ogni due settimane. È triste che loro crescano con una cosi triste realtà da affrontare!!

Per favore continuate a pregare per Matt. Sentiamo la forza che viene dalle preghiere e siamo stati incredibilmente benedetti nei mesi scorsi. Il Padre celeste non ha guarito Matt, ma ci ha benedetto tanto in molti altri modi. Tutti i nostri figli stanno andando avanti con la loro vita e ci portanno tanta gioia. Attraverso questa prova abbiamo conosciuto dei meravigliosi amici e abbiamo scoperto che gli amici che avevamo, sono gli amici migliori!! Grazie a tutti! Vi vogliamo bene!

Staying the Course

Time seems to move forward so fast with so many things to do and then I realize that I haven't written to update all of you!

We were at the cancer center from the 17th - 20th and there is not much new news. Matt's tumor marker rose just slightly and the oncologist told us that is too soon to know if the new chemo cocktail is working or not. We were hoping for it to drop so there was some disappointment there.

There is good news, it seems that this new chemo doesn't make Matt as sick as the old medicine did. This is good news indeed in the fact that Matt has more energy and is able to have a better quality of life. He is still really bothered by the stuffy, bloody nose that seems to be getting worse over time. This is caused by one of the drugs that was not changed.

After getting the results of the last ct scan, Matt and I have sat down and made some family and personal goals for how we want to spend this precious time that we have together. We have made a lot of summer plans where we hope to create more beautiful family memories. Our first trip will be in two weeks and we will be spending a week in St. John, US Virgin Islands. We are staying in a large home near the beach and we plan on relaxing and playing together the entire week!

We have plans to go camping and to go up to Yosemite with our dear friends. Logan is coming home for the summer to spend it with his dad. He will go with Matt to the cancer center sometimes and this will help me a lot! I feel guilty leaving the four youngest for almost a week every other week. It is sad that they are growing up with such heavy life realities to deal with!!

Please continue with the prayers for Matt. We can feel their strength and have been so incredibly blessed over the past few months. Heavenly Father has not healed Matt, but he has blessed us so much in many other ways. All of our children are moving forward in their lives and they bring us so much joy. We have gained so many wonderful friends through this trial and have found that the friends we already had are the best friends ever!! Thank you all! We love you!

Triste…non ho buone notizie

È domenica sera e siamo ancora qui al centro del cancro. Ritorneremo a casa domani mattina, dopo una permanenza di una settimana. La colonoscopia è andata bene, visto che il tumore ha risposto alla chemio ed ora è molto piccolo. Dall’altro lato però la tac non è andata bene. I risultati hanno mostrato che i tumori ai polmoni sono cresciuti e sono apparsi altri piccolissimi. I tumori al fegato stanno diminuendo, quindi erano risultati con sentimenti misti. Non è comune avere un organo che progredisce, mentre l’altro non lo fa, ma è quello che sta succedendo. Il dottore di Matt vuole aspettare prima di cominciare qualsiasi terapia diretta al fegato, fino a quando non avremo sotto controllo i tumori polomonari. Ha cambiato di nuovo le medicine di Matt ed ora è tornato alla pompa di 48 ore dopo l’infusione, quindi dovremo ritornare ogni due settimane e dovremo stare qui all’ospedale per tre giorni.

Ci siamo incontrati con il tecnico della radiologia interventistica e ha visto tutte le tac di Matt e ha risposto alle nostre domande riguardo alla diretta terapia al fegato. Speriamo di poter riguardare di nuovo quelle possibilità, se queste nuove medicine funzioneranno.

Ci siamo anche incontrati con il chirurgo e ci ha detto che realisticamente Matt non potrà mai avere un intervento per rimuovere i tumori al fegato. Un tumore si trova precisamente sui alcuni vasi sanguigni che sono necessari al lobo sinistro del fegato. Questo significa che l’intero lobo sinistro dovrebbe essere rimosso, ma visto che lui ha tumori anche al lobo destro, non rimarrebbe tanta parte sana del fegato dopo l’intervento. Anche questa era una notizia triste.

Stiamo cercando di creare più ricordi familiari.

Sabato, io e Matt siamo andati a Tucson ad un funerale. Al forum del club del colon ho incontrato una meravigliosa donna cristiana il cui marito è morto a causa di un cancro al colon del IV grado. Il funerale era bellissimo e anche se Matt all’inizio non voleva andare, alla fine era felice di essere li. Tutti e due abbiamo sentito forte lo spirito di Dio e la mia amica è una donna meravigliosa con grande forza e spiritualità.

Dopo il funerale abbiamo incontrato i parenti e ci hanno presentato alla sorella di Bryan (il deceduto). Le abbiamo detto che Matt ha lo stesso cancro che aveva Bryan e che ora è un po’ più “pesante” e Matt ha fatto quello che sempre fa nelle situazioni scomode…ha fatto una battuta. Ha detto, “c’è un messaggio che vorresti che io porti a bryan?” Beh, sicuramente non si è aspettato una reazione del genere, visto che io ho cominciato a piangere fortemente!!

Il funerale ci ha permesso di parlare un po’ e Matt mi ha espresso alcuni desideri che vorrebbe per il suo funeral. Tutti e due eravamo molto grati della conoscenza che abbiamo che questa vita non è la fine. La nostra conoscenza del Padre celeste e del Salvatore rende il viaggio sopportabile. Sotto c’è il link della canzone che è stata cantata al funerale a cui piace molto a Matt. Lui vuole che questa canzone venga cantata al suo funerale. Spero che vi piaccia! Si chiama “If you could see me now” (Se potessi vedermi ora). http://www.youtube.com/watch?v=ivM1ytYswNA

Cari saluti,

Niki

Sigh......Not Good News

It is Sunday night and we are still here at the cancer center. We leave tomorrow morning after being here for a week. The colonoscopy went well as the tumor there has responded to the chemo and is very small. The ct scan on the other hand, did not go well. It showed that the lung tumors have grown and some new very small ones have appeared. The liver tumors are still shrinking so it was mixed results. Of course this is uncommon to have one organ progress while the other responds, but it is what it is. Matt's doctor wants to wait to do any liver directed therapies until we can get the lung tumors under control. He switched Matt's medicine and he is back on the 48 hour pump after infusion so we have to return every other week again and have to stay here at the hospital for 3 days.

We met with the interventional radiologist and he went over all of Matt's scans and answered all of our questions about liver directed therapies. We hope to be able to relook at these options if this new medicine works.

We also met with the surgeon who told us that realistically Matt will not ever be able to have surgery to remove the tumors in the liver. One tumor is located directly on some blood vessels that are needed for the left liver lobe. This means that the entire left lobe would need to be removed and because he has tumors in the right lobe as well, there would not be enough healthy liver left after surgery. This was sad news as well.

We are making plans to make more family memories.

Saturday Matt and I drove to Tucson to a funeral. On the Colon Club forum I met a wonderful Christian woman whose husband just passed away from stage IV colon cancer. The funeral was beautiful, and although Matt did not want to go at first, he was so happy that he went. We both felt the spirit of God there so strong and my friend is an amazing woman of strength and spirituality.

After the funeral, as we were meeting the relatives, Matt and I were introducing ourselves to Bryan's (the deceased) sister. We were telling her that Matt has the same cancer as Bryan had and it got a little "heavy" and so Matt did what he always does in an uncomfortable situation...he made a joke. He said, "is there a message you would like me to pass on to Bryan?" Well he certainly didn't get the response he expected as I burst into tears!!

The funeral opened up some good lines of communication for Matt and I and he told me about some wishes that he would like for his funeral. We were both incredibly grateful that we know that this life is not the end. Our knowledge in a loving Heavenly Father and our Savior makes this journey endurable. Below is a song that was sung at the funeral that Matt loved. He wants this song sung at his funeral. I hope you all enjoy it! It is called "If You Could See Me Now." I was hoping for a link to come up but can't seem to get it right. The address is right, there just isn't a link. Sorry.

http://m.youtube.com/index?desktop_uri=%2F&gl=US#/watch?v=ivM1ytYswNA

Love to all!
Niki

Si va avanti lentamente, ma con certezza

Scusate se mi ci è voluto cosi tanto tempo per scrivere di nuovo! Ho ricevuto molti messaggi dai nostri amici che ci hanno chiesto un aggiornamento, visto che il mio ultimo messaggio era un po’ troppo “veritiero” e “pesante”.

Lo scorso mese era molto impegnata, visto che ho dovuto aiutare mia suocera che non stava tanto bene. Lei si prende cura, a tempo pieno, del fratello disabile di Matt e ultimamente sta diventando troppo per lei. Temporaneamente l’abbiamo spostata da casa sua e i fratelli di Matt stanno cercando di cambiare la custodia del fratello e passarla ad uno dei fratelli. Siccome io e Matt siamo gli unici che vivono vicini e Matt e troppo ammalato per prendersi cura di nuove cose, allora è toccato a me far in modo che Sam (il fratello disabile di Matt) abbia le cure necessarie. Ho dovuto occuparmi dei documenti e farsi che gli altri fratelli sapessero che cosa stesse succedendo. Speriamo di poter spostare Sam, tra un paio di mesi, a Showlow, vicino ad un fratello.

A farla breve, non ho scritto a causa dei doveri che avevo oltre al cancro e con Matt le cose sono praticamente allo stesso punto. Siamo appena ritornati dall’ospedale e le ultime due analisi del sangue sono quasi perfette! Si!! La mia preoccupazione è che nelle ultime 4 settimane, Matt si stia sentendo peggio di prima. Questo fine settimana era molto ammalato e perciò anche se il regime della chemio che ha adesso sembra che stia facendo un buon lavoro, sembra però che lo stia facendo sentire peggio. Sono preoccupata che presto deciderà che quando è troppo è troppo e che rifiuterà i trattamenti. Lui sta ancora lavorando, ma sta diventanto più difficile arrivare al termine della giornata.

Però non vediamo l’ora che arrivi il fine mese. Matt ritornerà al centro del cancro per una colonoscopia ed una tac. Poi incontreremo un tecnico della radiologia interventistica per vedere se Matt potrà essere un candidato per la diretta cura al fegato. Questo dipenderà dalla quantità di cancro ai polmoni. Se ci sono tanti tumori, allora farà solamente la chemio, ma come avete letto sopra non è l’opzione che noi vogliamo! Per favore pregate per noi, affinché Matt abbia una buona tac e che si possa procedere con altre opzioni.

Moving Forward Slowly but Surely!

Sorry to all that it has taken me so long to write again! I have received many messages from friends asking for an update as my last post was a little too "real" and "heavy".

This past month has been very busy helping out my mother in law whose health has been very poor. She takes care of Matt's disabled brother full time and it was becoming too much for her. We have moved her out of her home temporarily and Matt's brothers are in the process of taking over the guardianship of their brother. Because Matt and I are the only ones that live close by, and Matt is too sick to take on any new things, I have had to be responsible for making sure that Sam (Matt's disabled brother) is being cared for properly. I have been taking care of paper work and making sure that the other brothers know what is going on at all times. We hope to be able to move Sam up to Showlow near a brother in a few months.

So long story short, I haven't written because of obligations other than cancer and everything is basically still the same with Matt right now!. We just returned from the hospital and Matt's blood work has been almost perfect the last two times! Yeah!! My concern though is that Matt has been feeling much worse than usual for the past 4 weeks. This weekend he was feeling very sick and weak and so, although the chemo regimen he is on right now seems to be doing a good job, it is also making him sicker. I worry that he will soon decide that enough is enough and refuse treatment. Matt is still working, but it is becoming more difficult for him to make it through the day.

We do have something to look forward to at the end of the month. Matt will return to the cancer center for a colonoscopy and a ct scan. We will then meet with an interventional radiologist who will give us his opinion whether Matt will be a candidate for liver directed therapy. All of this depends on the amount of cancer in the lungs. If there is too much there, he will be back to chemo only which as you can see from above is not the option we want! Please pray for us that Matt will have a good scan and we will be able to proceed with some other options.